#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
().
See #patientchat Influencers/Analytics.

Sign up for FREE Symplur Account and Get
  • Create Transcripts with Custom Dates
  • Get Custom Influencer Lists
  • 3x Hashtag Search Results
Sign Up Now
ProfileTweet
Patient Chat @patientchat
Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Chat @patientchat
The Empowered #patientchat is a project of @power4patients and @intakeme
Team Intake.Me @Intakeme
RT @patientchat: Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to emp…
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Team Intake.Me @Intakeme
Glad to be joining #patientchat gang again today to discuss this important topic!
Patient Chat @patientchat
Excited to have to woman who started it all, Darla Brown from @intakeme, as our special guest and co-host today #patientchat
Patient Chat @patientchat
If you haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat
IFFGD @IFFGD
IFFGD here to talk about shame & stigma in chronic digestive diseases & other chronic illnesses #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Team Intake.Me @Intakeme
Darla here. Co-founder of @Intakeme and #patientchat Great to be here with you all!
Juliana @ladyjazzsinger
Happening now! #patientchat #chronicillness #PatientsHavePower #PatientDoctorRelationship https://t.co/bAtBSyTefu
Rie Lopez, MPH @RieOfLetters
RT @patientchat: If you haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat
Your GPS Doc, LLC @yourgpsdoc
I'm Nicole Rochester, a physician and patient/health advocate, former caregiver, and founder of @yourgpsdoc #patientchat
Stroke Tattler @Stroketattler
Hi Sharon, wife of John, the person who had a stroke in 1997. Together we are @stroketattler #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: If you haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat
Patient Chat @patientchat
Today's chat is solely informational & not a substitute for speaking w/a doctor who's familiar w/your medical needs & history. #patientchat
Patient Empowerment @power4patients
Hi everyone. It's Andrea from PEN. Happy to join you from Boulder, CO on this lovely Friday #patientchat
Team Intake.Me @Intakeme
@patientchat We also recently finished conseilspatients.ch. A French version of the epatient101 course. #patientchat
Stroke Tattler @Stroketattler
@power4patients Hi Andrea, What is PEN? #patientchat
Alan Brewington @abrewi3010
Alan here. A very exhausted & burnt out #Caregiver & #chronicpain & #inflammatoryarthritis patient from #idaho here. #patientchat https://t.co/Lnr4wvTn6S
Kimberly Amelia @fireflyrn84
Yay, didn’t miss much! Kim here! #patientchat
Becky Brandt RN @bbhomebody
Hi tweeters, I'm Becky with @Cpnervecenter #patientchat
Stroke Tattler @Stroketattler
@yourgpsdoc Hi Nicole! #patientchat
Rie Lopez, MPH @RieOfLetters
Hi all! Rie here. ☺️ Health educator, chronic migraineur and #ChronicPain patient. Looking forward to chatting with y'all! #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Chronic Disease and Shame https://t.co/40Js21RTUn
burtrosen @burtrosen
hi everyone! burt here for today's #PatientChat, one of my favorite chats of the week!
Patient Chat @patientchat
This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat
Katie @katie5280
@patientchat Hi! I'm Katie, a 7 yr. breast cancer survivor & t2 diabetic. I have volunteer roles w/ @YSCBuzz @BeBrightPink & @LivingBeyondBC #patientchat
Stroke Tattler @Stroketattler
@Intakeme Hi Darla. It has been a while since I was on chats. #patientchat
Lisa Davis Budzinski @lisadbudzinski
Hi everyone! Jumping over from #HITsm to #patientchat
Patient Empowerment @power4patients
Hi @Stroketattler We're Patient Empowerment Network (PEN) check us out :) https://t.co/uKLR16CptZ #patientchat
Patient Chat @patientchat
I will introduce new Topics with T1, T2...Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Becky Brandt RN @bbhomebody
@fireflyrn84 U beat me here by 4 seconds 😀#patientchat
Lisa Davis Budzinski @lisadbudzinski
@Intakeme @patientchat Really?!! That’s wonderful! 👏👏👏 #PatientChat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat
Stroke Tattler @Stroketattler
@lisadbudzinski Hi Lisa! #patientchat
Kimberly Amelia @fireflyrn84
@lisadbudzinski I have to go back to #HITsm and catch up when I’m done here... #PatientChat
Team Intake.Me @Intakeme
Welcome everyone. Good to see you! #patientchat
Angela Cohen @angelee828
Angela from Wisconsin here. Looking forward to another interesting and informative #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Patient Chat @patientchat
T1: What role does shame play in healthcare for patients? #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: What role does shame play in healthcare for patients? #patientchat
Kimberly Amelia @fireflyrn84
@bbhomebody I happened to get off the phone with the doc just in time #patientchat
Lisa Davis Budzinski @lisadbudzinski
@Stroketattler Hi Sharon! 👋 #Patientchat
Team Intake.Me @Intakeme
RT @patientchat: T1: What role does shame play in healthcare for patients? #patientchat
IFFGD @IFFGD
A1 Shame and stigma are significant barriers to obtaining an accurate diagnosis & proper care for many pts. #patientchat
Team Intake.Me @Intakeme
T1. Shame can prevent people from getting the care they need & can prevent them from fully communicating their symptoms. #patientchat
IFFGD @IFFGD
A1 For many, the emotional impact of shame & stigma may reduce their quality of life even more than their symptoms. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T1: Shame prohibits patients and doctors from engaging in meaningful conversations & often prevents patients from seeking care. #patientchat https://t.co/CcLhbJhQRx
Team Intake.Me @Intakeme
@Stroketattler Good to see you back! #patientchat
Kimberly Amelia @fireflyrn84
@angelee828 WI girls hitting a lot of chats lately! #PatientChat
Alan Brewington @abrewi3010
T1 I don't think shame is exclusive to healthcare, I think shame is an untreated symptom of being a chronic patient in life. #patientchat
IFFGD @IFFGD
RT @Intakeme: T1. Shame can prevent people from getting the care they need & can prevent them from fully communicating their symptoms. #pat
STELLAR Study @stellarstudy
@StellarStudy is joining today's #patientchat!
Stroke Tattler @Stroketattler
T1 I can't speak to all conditions, but in life style conditions like stroke, pts essentially "to blame" for their condition. #patientchat
Becky Brandt RN @bbhomebody
T1 Sadly, shame is huge. For feeling awful, not working, taking meds, loss of functioning, needing assistance. #patientchat
burtrosen @burtrosen
T1: shame hits family members Ive seen lots of families feel shame or be in denial about #lyme #autism and other chronic issues #PatientChat
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: T1 Sadly, shame is huge. For feeling awful, not working, taking meds, loss of functioning, needing assistance. #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up... https://t.co/40Js21RTUn #patientchat
Stroke Tattler @Stroketattler
T1 @abrewi3010 Hi Alan, I would totally agree that anything "chronic" is positioned as preventable, your responsibility #patientchat
Clara @Clara_Health
@patientchat A1: So many illnesses are stigmatized in society, leaving patients at risk of avoiding seeking treatment out of shame. #patientchat #noshame
Rie Lopez, MPH @RieOfLetters
T1: Shame comes from many places- not being able to do things we want, invisibility of illness, that it's all in your head. #patientchat
Kimberly Amelia @fireflyrn84
T1: Numerous roles; to an extent shame and preconceived notions can go hand in hand some conditions. HCP perception and public #patientchat
Patient Critical Co-op @PatientCritical
T1 shame is a dominant part of society: shame of social status, of mental/physical condition, of challenging authority #patientchat
Alan Brewington @abrewi3010
RT @Stroketattler: T1 @abrewi3010 Hi Alan, I would totally agree that anything "chronic" is positioned as preventable, your responsibility…
ElizabethKelly, Ph.D @Elizabe85727641
Greetings, Liz Kelly, joining late #patientchat
Patient Chat @patientchat
T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat
Team Intake.Me @Intakeme
This is a crucial point. Patients should never be blamed for their condition. It hurts and discourages sharing. #PatientChat https://t.co/toX3r7lhcl
Liz Kennerley @LifeAccrdingLiz
I'm Liz and represent quite a few rarely known and #rarediseases. #patientchat
Clara @Clara_Health
@RieOfLetters True- but at no fault of the patient. Industry and care provides need to be encouraging and #listen to patient voices. #patientchat
Rie Lopez, MPH @RieOfLetters
@bbhomebody Absolutely true, Becky! Sometimes, I've been unable to bathe or feed myself without help. It is crushing! #patientchat
Patient Critical Co-op @PatientCritical
RT @Intakeme: This is a crucial point. Patients should never be blamed for their condition. It hurts and discourages sharing.…
Becky Brandt RN @bbhomebody
@RieOfLetters Yes! The invisible factor is exhausting! #patientchat
Lisa Davis Budzinski @lisadbudzinski
This👇! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.co/QE5YSabvXN
Kimberly Amelia @fireflyrn84
Shame actually can have an impact on mortality/morbidity statistics if we looked further, d/t not seeking care #patientchat https://t.co/CuFgns3hdr
Alan Brewington @abrewi3010
T1 Shame is also a symptom for #caregivers too. Possible symptom of being burnt out or lack of self care. #patientchat
Stroke Tattler @Stroketattler
@burtrosen T1 As Wife of, certainly agree that families also share the shame of chronic, so-called lifestyle conditions #patientchat
Becky Brandt RN @bbhomebody
RT @RieOfLetters: T1: Shame comes from many places- not being able to do things we want, invisibility of illness, that it's all in your hea…
Team Intake.Me @Intakeme
RT @patientchat: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @Intakeme: This is a crucial point. Patients should never be blamed for their condition. It hurts and discourages sharing.…
Erin Gilmer @GilmerHealthLaw
thought I could do 2 chats in a row but need brain reset. sorry to miss #patientchat
Alan Brewington @abrewi3010
RT @lisadbudzinski: This👇! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.c…
Stroke Tattler @Stroketattler
@bbhomebody @RieOfLetters T1 is that invisibility factor of shame part of the power differentials in healthcare? #patientchat
Breakthrough Crew @brkthrough_crew
This is alarmingly true! Patients are sometimes too ashamed to even admit it to themselves, let alone ask for help. #patientchat https://t.co/A1ntesheWh
Kimberly Amelia @fireflyrn84
T1: Can be big with family and friends also; mostly because of how they are perceived being around someone sick.. #patientchat
Patient Empowerment @power4patients
Shame&stigma often debilitating as symptoms @lil_lytnin talks about it& you won't soon forget her words https://t.co/2FbAsGeAVE #patientchat
Katie @katie5280
@patientchat T1: Shame can prevent people from receiving the help they need or even talking about it. #patientchat
Alan Brewington @abrewi3010
T2 shame has prevented me from seeking #Mentalhealth help on several occasions. #PatientChat
Patient Empowerment @power4patients
RT @patientchat: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat
Stroke Tattler @Stroketattler
@power4patients @lil_lytnin T1 I don't think it is just the being around, but the "shared responsibility" --your fault too #patientchat
Kyle Murray @thekylemurray
A1) Shame prevents planning and preparation. "I shouldn't have to" becomes "I didn't." #patientchat
IFFGD @IFFGD
RT @katie5280: @patientchat T1: Shame can prevent people from receiving the help they need or even talking about it. #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @Elizabe85727641: T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patien
Rie Lopez, MPH @RieOfLetters
T2: When I was getting a lot of "must be psychological" feedback, I stopped talking about my pain symptoms entirely. #shame #patientchat
Clara @Clara_Health
@lisadbudzinski It's important for ALL to step back and recognize the diagnosis is no ones fault. Patients don't choose to be sick! #patientchat
Kyle Murray @thekylemurray
A1B) Can't tell you the number of times we've heard patients say "I should have done this sooner." All too common. #patientchat
Rie Lopez, MPH @RieOfLetters
RT @brkthrough_crew: This is alarmingly true! Patients are sometimes too ashamed to even admit it to themselves, let alone ask for help.…
Lisa Davis Budzinski @lisadbudzinski
@GilmerHealthLaw We totally understand 💞 It’s tough to host & continue with more Rest your self #Patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up... https://t.co/40Js21RTUn #patientchat
Angela Cohen @angelee828
T1: Can be isolating whether put it on myself or something said by HCP/others. Affects self image & makes it harder 2 open up. #patientchat
Clara @Clara_Health
@patientchat We offer a lot of options for patients and loved ones to seek treatment anonymously, so no patient is left untreated. #patientchat
Team Intake.Me @Intakeme
T2. I often felt I should be able to handle the pain and symptoms. Shame shows up in many ways. #patientchat
Kimberly Amelia @fireflyrn84
T2: Shame hasn’t prevented me from seeking treatment, but prevented me from being able to access svcs d/t how my spouse sees it #patientchat
Katie @katie5280
@patientchat T2: For me, no. I get that most providers have seen/heard it all, so if something is wrong, I get it checked! #patientchat
Mighty Casey Quinlan @MightyCasey
[runs in late - writing on deadline!] HI!!! #patientchat
Breakthrough Crew @brkthrough_crew
@angelee828 Does talking to other patients help? How do you overcome the isolation? #patientchat
Patient Chat @patientchat
T3: What are your experiences of disease and the issue of shame? #patientchat
Patient Empowerment @power4patients
Let's not forget shame felt by #caregivers when they struggle with providing care & the burnout that often comes with it #patientchat
Alan Brewington @abrewi3010
T2 shame also has me play the "what if I would have done...". Robs me of living in moment. #patientchat
Kimberly Amelia @fireflyrn84
@LifeAccrdingLiz Hey Liz, long time no see! #patientchat
Patient Empowerment @power4patients
RT @patientchat: T3: What are your experiences of disease and the issue of shame? #patientchat
Liz Kennerley @LifeAccrdingLiz
A1: Unfortunately, I think shame and chronic illness are more prevalent in women. Especially #invisibleillness. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T2: This is a huge problem and very common. Providers must be more sensitive and stigma needs to be removed. #patientchat https://t.co/z2qRhHuIuC
Stroke Tattler @Stroketattler
T2 Not a barrier to seeking healthcare, but often ALL symptoms are blamed on the stroke, #patientchat
Rie Lopez, MPH @RieOfLetters
@Stroketattler @bbhomebody I think it certainly plays a role, @Stroketattler, especially when symptoms aren't visible at point of care! #patientchat
Lisa Davis Budzinski @lisadbudzinski
@Intakeme This in a huge way! #PatientChat
Team Intake.Me @Intakeme
RT @RieOfLetters: T2: When I was getting a lot of "must be psychological" feedback, I stopped talking about my pain symptoms entirely. #sha
Becky Brandt RN @bbhomebody
T2 Explaining to someone why your invisible illness makes u feel horrible while they roll their eyes. They Mean to shame me #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @Clara_Health: @patientchat We offer a lot of options for patients and loved ones to seek treatment anonymously, so no patient is…
Stroke Tattler @Stroketattler
@LifeAccrdingLiz Totally agree that women are more aware of shame or at least affected by it. #patientchat
Alan Brewington @abrewi3010
RT @yourgpsdoc: T2: This is a huge problem and very common. Providers must be more sensitive and stigma needs to be removed.…
Kyle Murray @thekylemurray
A3) That because circumstances have changed due to a disease, shame of needing care from others in ADLs. #patientchat
Clara @Clara_Health
@power4patients Great point. Caregivers are often under as much emotional strain as patients, and should be included in the conversation! #patientchat
Team Intake.Me @Intakeme
RT @patientchat: T3: What are your experiences of disease and the issue of shame? #patientchat
Mighty Casey Quinlan @MightyCasey
A1: Fat-shaming is pernicious in healthcare. Evidence says obesity more genetic than "willpower" https://t.co/fsRLDDJfsV #patientchat
z 🦜 @zebrafinch
RT @LadyJazzSinger: Happening now! #patientchat #chronicillness #PatientsHavePower #PatientDoctorRelationship https://t.co/bAtBSyTefu
Stroke Tattler @Stroketattler
@bbhomebody Stroke survivors with less visible impairment get that --"you must be happy you aren't disabled" #patientchat
IFFGD @IFFGD
A3 We have found that shame is a significant barrier to care & emotional burden for those w/ fecal #incontinence. #patientchat
Rie Lopez, MPH @RieOfLetters
@Intakeme Yes! I get this! If I just try harder or was a tougher person, I would be fine. #patientchat
Mighty Casey Quinlan @MightyCasey
A2: Shame prevented me from getting timely treatment for HPV back in the mid-'70s. #patientchat
z 🦜 @zebrafinch
RT @patientchat: I will introduce new Topics with T1, T2...Please include corresponding T# at front of answer - hard to remember but helpfu…
z 🦜 @zebrafinch
RT @patientchat: This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat
z 🦜 @zebrafinch
RT @patientchat: T1: What role does shame play in healthcare for patients? #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T2 Shame = not taking care of self/self-reporting was personal burden till someone listened to me & practiced Pt-centered HC #patientchat
z 🦜 @zebrafinch
RT @patientchat: Topic 2 (T2:) coming up... https://t.co/40Js21RTUn #patientchat
z 🦜 @zebrafinch
RT @patientchat: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat
z 🦜 @zebrafinch
RT @patientchat: Topic 3 (T3:) coming up... https://t.co/40Js21RTUn #patientchat
Alan Brewington @abrewi3010
T3 as a long time #skiinstructor I use to be able to ski anywhere. On bad pain days beginner runs are hard. Ego takes hit! #patientchat
z 🦜 @zebrafinch
RT @patientchat: T3: What are your experiences of disease and the issue of shame? #patientchat
Kyle Murray @thekylemurray
A3) Not reaching out for help personally when panic attacks occurred because "I shouldn't rely on others to help." #patientchat
Mighty Casey Quinlan @MightyCasey
A2: I was told to lose weight by a neurologist when I saw him for a repetitive wrist injury issue. No fix for wrist, tho. #patientchat
Anne Polta @annepolta
Research actually has shown that women's symptoms aren't always taken as seriously as men's. #patientchat https://t.co/QqvQqDvzYR
Becky Brandt RN @bbhomebody
@RieOfLetters It Sure is Rie! Doesn't do much for self esteem does it😐 #patientchat
Clara @Clara_Health
A3: We see empowered patients talk about their disease publicly. We admire their strength in overcoming shame to help others. #patientchat
Rie Lopez, MPH @RieOfLetters
This! The 'what if' game we play with ourselves holds us back from living our best life! #patientchat https://t.co/2OEvWlz2Lx
Stroke Tattler @Stroketattler
@MightyCasey Yes Family Doc at conference spoke about how little they know about causes of obesity beyond ind. responsibility #patientchat
Anne Polta @annepolta
THIS. #patientchat https://t.co/5K2YZMSQsZ
Melissa VanHouten @melissarvh
T3 I've never been ashamed of my illness but many in groups fear seeking care b/c they might be seen as "at fault" or "faking." #patientchat
Sas Freeman @sas_freeman
RT @Stroketattler: T2 Not a barrier to seeking healthcare, but often ALL symptoms are blamed on the stroke, #patientchat
Mighty Casey Quinlan @MightyCasey
A2: Shame prevalent in chronic pain and mental health conditions. "Take your meds" and/or "No meds for you, drug seeker" smh #patientchat
Clara @Clara_Health
@TheKyleMurray So sorry you had to go through that. No one should fight a diagnosis alone. Let us know if we can help. #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up... https://t.co/40Js21RTUn #patientchat
Team Intake.Me @Intakeme
@LifeAccrdingLiz Interesting. That has not been my experience. Men I’ve known are taught to “tough it out” so feel shame when they need help. #PatientChat
Katie @katie5280
@patientchat T3: Breast cancer is considered a “women’s disease”, so there can be shame when a man is diagnosed. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T3 Not being believed or compared to so&so who had the same but better now 😳 #patientchat https://t.co/nyyWJ5reNa
Patient Chat @patientchat
T4: Why do you think some patients feel shame more than others? #patientchat
Patient Empowerment @power4patients
T3 I experienced shame as a caregiver. Wanted to scream "I can't do this anymore!" to everyone I met, depression soon followed #patientchat
Patient Empowerment @power4patients
RT @patientchat: T4: Why do you think some patients feel shame more than others? #patientchat
Stroke Tattler @Stroketattler
@MightyCasey Yes Shame of assumptions All issues blamed on obvious condition e.g., obesity, stroke, later life, frailty #patientchat
Kimberly Amelia @fireflyrn84
T3: Weight is a huge source of shame. Various meds by themselves cause issues. Pathophysiology is huge w/disease. Many unaware #patientchat
Richard Kreis @kreisr1
RT @patientchat: T4: Why do you think some patients feel shame more than others? #patientchat
Rie Lopez, MPH @RieOfLetters
T3: I was experiencing my first hemiplegic migraine and the EMTs were discussing my possible drug use in front of me. #shame #patientchat
Richard Kreis @kreisr1
RT @patientchat: Topic 4 (T4:) coming up... https://t.co/40Js21RTUn #patientchat
IFFGD @IFFGD
A3 Accusations of "faking" or "drug-seeking" are very damaging for those suffering w/ a chronic and/or invisible illness. #patientchat
Breakthrough Crew @brkthrough_crew
@AnnePolta @RachelBasso talks about her challenges with this a lot. Younger people are often taken less seriously as well. #patientchat
Patient Empowerment @power4patients
RT @brkthrough_crew: @AnnePolta @RachelBasso talks about her challenges with this a lot. Younger people are often taken less seriously as w…
Rie Lopez, MPH @RieOfLetters
RT @power4patients: T3 I experienced shame as a caregiver. Wanted to scream "I can't do this anymore!" to everyone I met, depression soon f…
Alan Brewington @abrewi3010
T3 having to take a drug test, and pay for it myself, before my #PainManagement doc would see me. #opioidawareness #patientchat
Angela Cohen @angelee828
T2: I used 2 hesitate 2 call the longer I’ve had things. Like, “shouldn’t I know this by now?” Answer: No, I’m always learning! #patientchat
Richard Kreis @kreisr1
RT @yourgpsdoc: I'm Nicole Rochester, a physician and patient/health advocate, former caregiver, and founder of @yourgpsdoc #patientchat
Richard Kreis @kreisr1
RT @melissarvh: T3 I've never been ashamed of my illness but many in groups fear seeking care b/c they might be seen as "at fault" or "faki…
Richard Kreis @kreisr1
RT @Stroketattler: @MightyCasey Yes Shame of assumptions All issues blamed on obvious condition e.g., obesity, stroke, later life, frailty…
Richard Kreis @kreisr1
RT @RieOfLetters: @bbhomebody Absolutely true, Becky! Sometimes, I've been unable to bathe or feed myself without help. It is crushing! #pa
Richard Kreis @kreisr1
RT @abrewi3010: T2 shame also has me play the "what if I would have done...". Robs me of living in moment. #patientchat
Team Intake.Me @Intakeme
RT @patientchat: T4: Why do you think some patients feel shame more than others? #patientchat
Richard Kreis @kreisr1
RT @bbhomebody: @RieOfLetters Yes! The invisible factor is exhausting! #patientchat
Richard Kreis @kreisr1
RT @LifeAccrdingLiz: A1: Unfortunately, I think shame and chronic illness are more prevalent in women. Especially #invisibleillness. #patie
Breakthrough Crew @brkthrough_crew
@power4patients Caregivers have every right to feel shame! We encourage anyone else out there in these shoes to seek self-care. It's hard work! #patientchat
Kimberly Amelia @fireflyrn84
The “what-if’s” get us every time! #Patientchat https://t.co/KEXU1AYpH7
Richard Kreis @kreisr1
RT @MightyCasey: A1: Fat-shaming is pernicious in healthcare. Evidence says obesity more genetic than "willpower" https://t.co/fsRLDDJfsV #…
Richard Kreis @kreisr1
RT @patientchat: Topic 3 (T3:) coming up... https://t.co/40Js21RTUn #patientchat
Richard Kreis @kreisr1
RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9
Mighty Casey Quinlan @MightyCasey
A3: I've been fat-shamed (and I'm not really that "big") repeatedly by PCPs since menopause. Trackers + food logs = no change. #patientchat
Richard Kreis @kreisr1
RT @Intakeme: @LifeAccrdingLiz Interesting. That has not been my experience. Men I’ve known are taught to “tough it out” so feel…
Patient Empowerment @power4patients
RT @brkthrough_crew: @power4patients Caregivers have every right to feel shame! We encourage anyone else out there in these shoes to see…
Richard Kreis @kreisr1
RT @katie5280: @patientchat T2: For me, no. I get that most providers have seen/heard it all, so if something is wrong, I get it checked! #…
Richard Kreis @kreisr1
RT @IFFGD: Join @patientchat for a #patientchat about "Chronic Disease and Shame" in 15 minutes https://t.co/pc2tPpZBq9 https://t.co/pmGymW…
Richard Kreis @kreisr1
RT @Clara_Health: @TheKyleMurray So sorry you had to go through that. No one should fight a diagnosis alone. Let us know if we can help. #p
Rie Lopez, MPH @RieOfLetters
#caregivers need a lot more support! We are not angels, we're humans. #patientchat https://t.co/UkafMTfg4F
Richard Kreis @kreisr1
RT @Stroketattler: @bbhomebody Stroke survivors with less visible impairment get that --"you must be happy you aren't disabled" #patientchat
Alan Brewington @abrewi3010
T4 shame is like a human, no 2 are alike. #patientchat
Richard Kreis @kreisr1
RT @TheKyleMurray: A3) That because circumstances have changed due to a disease, shame of needing care from others in ADLs. #patientchat
Stroke Tattler @Stroketattler
@power4patients I think just the name "caregiver" is associated shame-- It "others" you -- not patient -- just an appendage #patientchat
Richard Kreis @kreisr1
RT @bbhomebody: Hi tweeters, I'm Becky with @Cpnervecenter #patientchat
Richard Kreis @kreisr1
RT @patientchat: Here’s some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #pat
Richard Kreis @kreisr1
RT @lisadbudzinski: @Intakeme @patientchat Really?!! That’s wonderful! 👏👏👏 #PatientChat
Richard Kreis @kreisr1
RT @RieOfLetters: Hi all! Rie here. ☺️ Health educator, chronic migraineur and #ChronicPain patient. Looking forward to chatting with y'all…
Richard Kreis @kreisr1
RT @fireflyrn84: @lisadbudzinski I have to go back to #HITsm and catch up when I’m done here... #PatientChat
Richard Kreis @kreisr1
RT @Stroketattler: @Intakeme Hi Darla. It has been a while since I was on chats. #patientchat
Stroke Tattler @Stroketattler
@bbhomebody @Cpnervecenter Hi Becky! #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @bbhomebody @RieOfLetters T1 is that invisibility factor of shame part of the power differentials in healthcare? #patie
Clara @Clara_Health
A4: Every patient is a person first, and no two people are exactly alike! #patientchat
Kyle Murray @thekylemurray
@Clara_Health It's all good. I've since put together a support group when I need it. I very much appreciate it. #patientchat
Richard Kreis @kreisr1
RT @angelee828: T1: Can be isolating whether put it on myself or something said by HCP/others. Affects self image & makes it harder 2 open…
Richard Kreis @kreisr1
RT @Stroketattler: @power4patients Hi Andrea, What is PEN? #patientchat
Richard Kreis @kreisr1
RT @RieOfLetters: @Intakeme Yes! I get this! If I just try harder or was a tougher person, I would be fine. #patientchat
Richard Kreis @kreisr1
RT @lisadbudzinski: @Stroketattler Hi Sharon! 👋 #Patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @power4patients I think just the name "caregiver" is associated shame-- It "others" you -- not patient -- just an append…
Richard Kreis @kreisr1
RT @brkthrough_crew: @power4patients Caregivers have every right to feel shame! We encourage anyone else out there in these shoes to see…
Richard Kreis @kreisr1
RT @PatientCritical: Hello from Canada #patientchat -PJ Mierau here, Managing Director of the first 💯% member-patient owned advocacy/educat…
Richard Kreis @kreisr1
RT @abrewi3010: T4 shame is like a human, no 2 are alike. #patientchat
Richard Kreis @kreisr1
RT @RieOfLetters: #caregivers need a lot more support! We are not angels, we're humans. #patientchat https://t.co/UkafMTfg4F
Richard Kreis @kreisr1
RT @MightyCasey: A3: I've been fat-shamed (and I'm not really that "big") repeatedly by PCPs since menopause. Trackers + food logs = no cha…
Richard Kreis @kreisr1
RT @Stroketattler: @power4patients @lil_lytnin T1 I don't think it is just the being around, but the "shared responsibility" --your fault t…
Richard Kreis @kreisr1
RT @katie5280: @patientchat T1: Shame can prevent people from receiving the help they need or even talking about it. #patientchat
Richard Kreis @kreisr1
RT @brkthrough_crew: @angelee828 Does talking to other patients help? How do you overcome the isolation? #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: @angelee828 WI girls hitting a lot of chats lately! #PatientChat
Rie Lopez, MPH @RieOfLetters
@MightyCasey Ugh! I'm angry for you. Certainly no way to actually help someone. #patientchat
Team Intake.Me @Intakeme
T4 Our culture is not a real culture of health. Thus society “approves” of some diseases more than others. #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: The “what-if’s” get us every time! #Patientchat https://t.co/KEXU1AYpH7
Melissa VanHouten @melissarvh
A4 I think some patients have been hurt by unkind family members & friends & treated with a lack of empathy by some providers. #patientchat
Richard Kreis @kreisr1
RT @StellarStudy: @StellarStudy is joining today's #patientchat!
Richard Kreis @kreisr1
RT @fireflyrn84: @LifeAccrdingLiz Hey Liz, long time no see! #patientchat
Richard Kreis @kreisr1
RT @lisadbudzinski: @Intakeme This in a huge way! #PatientChat
Kyle Murray @thekylemurray
A4) We naturally compare ourselves to others, even though we aren't the same. "They're doing better" = "I must be wrong." #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @LifeAccrdingLiz Totally agree that women are more aware of shame or at least affected by it. #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: Yay, didn’t miss much! Kim here! #patientchat
Richard Kreis @kreisr1
RT @burtrosen: hi everyone! burt here for today's #PatientChat, one of my favorite chats of the week!
Patient Empowerment @power4patients
@Clara_Health Exactly! #patientchat
Richard Kreis @kreisr1
RT @Clara_Health: A4: Every patient is a person first, and no two people are exactly alike! #patientchat
Rie Lopez, MPH @RieOfLetters
RT @Clara_Health: A4: Every patient is a person first, and no two people are exactly alike! #patientchat
Richard Kreis @kreisr1
RT @RieOfLetters: @MightyCasey Ugh! I'm angry for you. Certainly no way to actually help someone. #patientchat
Richard Kreis @kreisr1
RT @Intakeme: T4 Our culture is not a real culture of health. Thus society “approves” of some diseases more than others. #patientchat
Richard Kreis @kreisr1
RT @IFFGD: IFFGD here to talk about shame & stigma in chronic digestive diseases & other chronic illnesses #patientchat
Breakthrough Crew @brkthrough_crew
@IFFGD Patients don't have the energy to constantly "prove" their illness is real. Why would they lie about being sick ALL the time?! #patientchat
Richard Kreis @kreisr1
RT @PatientCritical: #healthcare advocacy gets heavy-but every day we see patients learn, share & speak out. Laugh & give yourself credi…
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: T3 I experienced shame as a caregiver. Wanted to scream "I can't do this anymore!" to everyone I met, depression soon f…
Melissa VanHouten @melissarvh
RT @TheKyleMurray: A4) We naturally compare ourselves to others, even though we aren't the same. "They're doing better" = "I must be wrong.…
Richard Kreis @kreisr1
RT @katie5280: @patientchat Hi! I'm Katie, a 7 yr. breast cancer survivor & t2 diabetic. I have volunteer roles w/ @YSCBuzz
Richard Kreis @kreisr1
RT @melissarvh: A4 I think some patients have been hurt by unkind family members & friends & treated with a lack of empathy by some provide…
Richard Kreis @kreisr1
RT @Stroketattler: @bbhomebody @Cpnervecenter Hi Becky! #patientchat
Alan Brewington @abrewi3010
RT @fireflyrn84: The “what-if’s” get us every time! #Patientchat https://t.co/KEXU1AYpH7
Richard Kreis @kreisr1
RT @RieOfLetters: @Stroketattler @bbhomebody I think it certainly plays a role, @Stroketattler, especially when symptoms aren't visib…
Richard Kreis @kreisr1
RT @bbhomebody: @RieOfLetters It Sure is Rie! Doesn't do much for self esteem does it😐 #patientchat
Richard Kreis @kreisr1
RT @TheKyleMurray: @Clara_Health It's all good. I've since put together a support group when I need it. I very much appreciate it. #patien
Richard Kreis @kreisr1
RT @AnnePolta: THIS. #patientchat https://t.co/5K2YZMSQsZ
Richard Kreis @kreisr1
RT @sanHelpsy: How do interactions with non-medical staff (front desk, scheduler, housekeeping) impact your perception of a hospital/clinic…
Richard Kreis @kreisr1
RT @power4patients: Hi @Stroketattler We're Patient Empowerment Network (PEN) check us out :) https://t.co/uKLR16CptZ #patientchat
Liz Kennerley @LifeAccrdingLiz
A3: That I was "exaggerating"... I sometimes use my Phone to document orthostatic BPs if they are normal in docs office #POTS #patientchat
Richard Kreis @kreisr1
RT @Intakeme: @Stroketattler Good to see you back! #patientchat
Richard Kreis @kreisr1
RT @bbhomebody: @fireflyrn84 U beat me here by 4 seconds 😀#patientchat
Richard Kreis @kreisr1
RT @ParijatDesh: Your baby needs a happy, healthy mom. Not a perfect one. #momlife #mindbody #patientchat #pregnancy #NICU
Kimberly Amelia @fireflyrn84
I think women are seen as more concerned/anxious and don’t necessary get the correct care. Also symptoms differ men vs women #patientchat https://t.co/0fYIFadf3O
Richard Kreis @kreisr1
RT @techguy: It's a nice juicy topic for this week's #HITsm chat hosted by @GilmerHealthLaw Details: https://t.co/OFpTeygHCa #PatientChat
Richard Kreis @kreisr1
RT @StellarStudy: Will you be joining the #patientchat tomorrow? We are! #btsm #braintumor #braincancer #cancer #cancerresearch https://t.c…
Patient Chat @patientchat
Topic 5 (T5:) coming up... https://t.co/40Js21RTUn #patientchat
Richard Kreis @kreisr1
RT @btrfly12: You don't look sick... | @tealelfs Living Life blog https://t.co/Yv5VOMkQWG #gyncsm #patientshavepower #patientchat https://…
Your GPS Doc, LLC @yourgpsdoc
T4: https://t.co/OcBNnZ17MK
Richard Kreis @kreisr1
RT @lisadbudzinski: I’ll be at the Empowered #patientchat on Fri 11/3 1pmET. Join me! https://t.co/0IW3I4drow via @power4patients
Anne Polta @annepolta
T4 I think we're all capable of feeling shamed in varying degrees. #patientchat
Richard Kreis @kreisr1
RT @CAHOhospitals: Bright and early tomorrow morning - tune in and add your voice to #onHWS! #hcsmca #patientchat https://t.co/cCkq9B0SKm
Breakthrough Crew @brkthrough_crew
@melissarvh We have heard horror stories of patients (specifically LGBTQ and female) being sexually shamed without reason. #patientchat #unacceptable
Rie Lopez, MPH @RieOfLetters
This, right here. All day long! I want to be functional and have a life! #patientchat https://t.co/QYF3o4FAD8
Richard Kreis @kreisr1
RT @Stroketattler: @MightyCasey Yes Family Doc at conference spoke about how little they know about causes of obesity beyond ind. responsib…
Stroke Tattler @Stroketattler
T4-- I think shame has lots to do how others position you and how the condition is stigmatized/ socially constructed. #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: @bbhomebody I happened to get off the phone with the doc just in time #patientchat
Richard Kreis @kreisr1
RT @katie5280: @patientchat T3: Breast cancer is considered a “women’s disease”, so there can be shame when a man is diagnosed. #patientchat
Richard Kreis @kreisr1
RT @Clara_Health: @RieOfLetters True- but at no fault of the patient. Industry and care provides need to be encouraging and #listen t…
Richard Kreis @kreisr1
RT @abrewi3010: Alan here. A very exhausted & burnt out #Caregiver & #chronicpain & #inflammatoryarthritis patient from #idaho here…
Your GPS Doc, LLC @yourgpsdoc
T4: I think it depends on the disease and how it is perceived by health care providers and society at large. #patientchat https://t.co/OcBNnZ17MK
Richard Kreis @kreisr1
RT @Clara_Health: @power4patients Great point. Caregivers are often under as much emotional strain as patients, and should be include…
Richard Kreis @kreisr1
RT @Intakeme: Welcome everyone. Good to see you! #patientchat
Mighty Casey Quinlan @MightyCasey
@RieOfLetters Oh, I can hold my own in any clinic setting =) #patientchat
Richard Kreis @kreisr1
RT @MightyCasey: A2: Shame prevalent in chronic pain and mental health conditions. "Take your meds" and/or "No meds for you, drug seeker" s…
ElizabethKelly, Ph.D @Elizabe85727641
T3 Shame & guilt seem to pervade societies, especially for women who lack physical/$$/Cultural Power or precedent. #patientchat
Richard Kreis @kreisr1
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/ @intakeme here: https://t.co/40Js21RTUn
Richard Kreis @kreisr1
RT @patientchat: Topic 2 (T2:) coming up... https://t.co/40Js21RTUn #patientchat
Richard Kreis @kreisr1
RT @patientchat: Today's #patientchat topic is Chronic Disease and Shame https://t.co/40Js21RTUn
Richard Kreis @kreisr1
RT @abrewi3010: T3 having to take a drug test, and pay for it myself, before my #PainManagement doc would see me. #opioidawareness #patient
Richard Kreis @kreisr1
RT @patientchat: The Empowered #patientchat is a project of @power4patients and @intakeme
Richard Kreis @kreisr1
RT @patientchat: I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Patient Chat @patientchat
T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat
Team Intake.Me @Intakeme
T4. There is immense pressure for patients when at doctor visit to rush through visit. Many feel shame for needing > time. #patientchat
Richard Kreis @kreisr1
RT @yourgpsdoc: T2: This is a huge problem and very common. Providers must be more sensitive and stigma needs to be removed.…
Richard Kreis @kreisr1
RT @HealthSparq: A really important #HITsm topic w/ @GilmerHealthLaw starts now: Patient Burnout. Come on over & join in #patientchat #WEGO
Richard Kreis @kreisr1
RT @angelee828: T2: I used 2 hesitate 2 call the longer I’ve had things. Like, “shouldn’t I know this by now?” Answer: No, I’m always learn…
Richard Kreis @kreisr1
RT @MightyCasey: A2: I was told to lose weight by a neurologist when I saw him for a repetitive wrist injury issue. No fix for wrist, tho.…
Richard Kreis @kreisr1
RT @lisadbudzinski: @GilmerHealthLaw We totally understand 💞 It’s tough to host & continue with more Rest your self #Patientchat
Patient Empowerment @power4patients
RT @patientchat: T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat
Breakthrough Crew @brkthrough_crew
@TheKyleMurray How can patients lift each-other up instead of comparing in a negative way? #patientchat
Richard Kreis @kreisr1
RT @Intakeme: Glad to be joining #patientchat gang again today to discuss this important topic!
Richard Kreis @kreisr1
RT @Intakeme: Darla here. Co-founder of @Intakeme and #patientchat Great to be here with you all!
Richard Kreis @kreisr1
RT @IFFGD: A1 For many, the emotional impact of shame & stigma may reduce their quality of life even more than their symptoms. #patientchat
Richard Kreis @kreisr1
RT @TheKyleMurray: A1B) Can't tell you the number of times we've heard patients say "I should have done this sooner." All too common. #pati
Richard Kreis @kreisr1
RT @patientchat: Time to start our topics. Here comes T1: #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: T2 Not a barrier to seeking healthcare, but often ALL symptoms are blamed on the stroke, #patientchat
Richard Kreis @kreisr1
RT @Clara_Health: @lisadbudzinski It's important for ALL to step back and recognize the diagnosis is no ones fault. Patients don't ch…
Richard Kreis @kreisr1
RT @patientchat: Today's chat is solely informational & not a substitute for speaking w/a doctor who's familiar w/your medical needs & hist…
Richard Kreis @kreisr1
RT @patientchat: If you haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat
Kyle Murray @thekylemurray
A4B) For me, "Millennial" jokes about us not being tough has shamed me into trying to go it alone and not seek help. #patientchat
Richard Kreis @kreisr1
RT @Intakeme: Today’s topic will be about shame. See you in 40 minutes. #patientchat
Lisa Davis Budzinski @lisadbudzinski
This👇! The few ruin it for the many. Comparing is very judgmental #patientchat https://t.co/qVjA9tmisL
Richard Kreis @kreisr1
RT @Stroketattler: Hi Sharon, wife of John, the person who had a stroke in 1997. Together we are @stroketattler #patientchat
Richard Kreis @kreisr1
RT @Intakeme: T1. Shame can prevent people from getting the care they need & can prevent them from fully communicating their symptoms. #pat
Richard Kreis @kreisr1
RT @patientchat: Excited to have to woman who started it all, Darla Brown from @intakeme, as our special guest and co-host today #patientch
Richard Kreis @kreisr1
RT @burtrosen: T1: shame hits family members Ive seen lots of families feel shame or be in denial about #lyme #autism and other chronic iss…
Richard Kreis @kreisr1
RT @Clara_Health: @patientchat A1: So many illnesses are stigmatized in society, leaving patients at risk of avoiding seeking treatme…
Becky Brandt RN @bbhomebody
T4 We're programmed to go go go. When we can't go anymore, we take it personally, even though we shouldn't. We Shame ourselves! #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @abrewi3010: T3 having to take a drug test, and pay for it myself, before my #PainManagement doc would see me. #opioidawareness #patient
Richard Kreis @kreisr1
RT @Intakeme: @patientchat We also recently finished conseilspatients.ch. A French version of the epatient101 course. #patientchat
Richard Kreis @kreisr1
RT @patientchat: Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to emp…
Richard Kreis @kreisr1
RT @patientchat: Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Team Intake.Me @Intakeme
RT @patientchat: T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat
Richard Kreis @kreisr1
RT @RieOfLetters: T3: I was experiencing my first hemiplegic migraine and the EMTs were discussing my possible drug use in front of me. #sh
Richard Kreis @kreisr1
RT @IFFGD: A3 We have found that shame is a significant barrier to care & emotional burden for those w/ fecal #incontinence. #patientchat
Richard Kreis @kreisr1
RT @lisadbudzinski: Hi everyone! Jumping over from #HITsm to #patientchat
Richard Kreis @kreisr1
RT @brkthrough_crew: This is alarmingly true! Patients are sometimes too ashamed to even admit it to themselves, let alone ask for help.…
Richard Kreis @kreisr1
RT @patientchat: I will introduce new Topics with T1, T2...Please include corresponding T# at front of answer - hard to remember but helpfu…
Your GPS Doc, LLC @yourgpsdoc
The same is true for people of color. #patientchat https://t.co/b3ki3YSuQM
Clara @Clara_Health
@MightyCasey @RieOfLetters Amazing #empowered patient answer right here! But if healthcare were perfect, you shouldn't have to! #patientchat
Richard Kreis @kreisr1
RT @abrewi3010: T3 as a long time #skiinstructor I use to be able to ski anywhere. On bad pain days beginner runs are hard. Ego takes hit!…
Mighty Casey Quinlan @MightyCasey
A4: Every person has a different threshold for shame. Those from deeply religious backgrounds bear more burden, IMO. #patientchat
Richard Kreis @kreisr1
RT @yourgpsdoc: T1: Shame prohibits patients and doctors from engaging in meaningful conversations & often prevents patients from s…
Patient Empowerment @power4patients
@bbhomebody Well said! And I couldn't agree more #patientchat
Richard Kreis @kreisr1
RT @TheKyleMurray: A1) Shame prevents planning and preparation. "I shouldn't have to" becomes "I didn't." #patientchat
Richard Kreis @kreisr1
RT @RieOfLetters: T2: When I was getting a lot of "must be psychological" feedback, I stopped talking about my pain symptoms entirely. #sha
Richard Kreis @kreisr1
RT @bbhomebody: T2 Explaining to someone why your invisible illness makes u feel horrible while they roll their eyes. They Mean to shame m…
Your GPS Doc, LLC @yourgpsdoc
RT @abrewi3010: T4 shame is like a human, no 2 are alike. #patientchat
Kimberly Amelia @fireflyrn84
T4: Those of us who have always had chronic conditions are used to seeking care and dismiss it. New pts may feel more shame . #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: T1 @abrewi3010 Hi Alan, I would totally agree that anything "chronic" is positioned as preventable, your responsibility…
Stroke Tattler @Stroketattler
@Elizabe85727641 so you are saying is shame is associated with power, ability to re-position yourself positively in illness? #patientchat
Richard Kreis @kreisr1
RT @Clara_Health: @patientchat We offer a lot of options for patients and loved ones to seek treatment anonymously, so no patient is…
ElizabethKelly, Ph.D @Elizabe85727641
T4 Pt feel shame because lack power, support, knowledge and do not meet traditional role expectations #patientchat
Richard Kreis @kreisr1
RT @angelee828: Angela from Wisconsin here. Looking forward to another interesting and informative #patientchat
Kyle Murray @thekylemurray
@brkthrough_crew I think we can be more mindful that everyone is on their own journey and offer support in any way we can. #patientchat
Richard Kreis @kreisr1
RT @IFFGD: A3 Accusations of "faking" or "drug-seeking" are very damaging for those suffering w/ a chronic and/or invisible illness. #patie
Richard Kreis @kreisr1
RT @MightyCasey: A2: Shame prevented me from getting timely treatment for HPV back in the mid-'70s. #patientchat
Richard Kreis @kreisr1
RT @abrewi3010: T1 Shame is also a symptom for #caregivers too. Possible symptom of being burnt out or lack of self care. #patientchat
Richard Kreis @kreisr1
RT @RieOfLetters: This! The 'what if' game we play with ourselves holds us back from living our best life! #patientchat https://t.co/2OEvWl…
Richard Kreis @kreisr1
RT @Intakeme: T2. I often felt I should be able to handle the pain and symptoms. Shame shows up in many ways. #patientchat
Richard Kreis @kreisr1
RT @GilmerHealthLaw: thought I could do 2 chats in a row but need brain reset. sorry to miss #patientchat
Alan Brewington @abrewi3010
T5 I try to be a big brother to however needs a friendly and safe shoulder. Friendship is the antidote to shame. #patientchat
Rheumatoid Patient @rheumpatient
RT @IFFGD: A1 For many, the emotional impact of shame & stigma may reduce their quality of life even more than their symptoms. #patientchat
Mighty Casey Quinlan @MightyCasey
A4: Women are culturally conditioned to be ashamed of their bodies. One of a zillion reasons I'm an atheist, actually. #patientchat
Richard Kreis @kreisr1
RT @power4patients: Hi everyone. It's Andrea from PEN. Happy to join you from Boulder, CO on this lovely Friday #patientchat
Richard Kreis @kreisr1
RT @brkthrough_crew: @AnnePolta @RachelBasso talks about her challenges with this a lot. Younger people are often taken less seriously as w…
Richard Kreis @kreisr1
RT @Elizabe85727641: Greetings, Liz Kelly, joining late #patientchat
Richard Kreis @kreisr1
RT @PatientCritical: T1 shame is a dominant part of society: shame of social status, of mental/physical condition, of challenging authority…
Richard Kreis @kreisr1
RT @TheKyleMurray: A3) Not reaching out for help personally when panic attacks occurred because "I shouldn't rely on others to help." #pati
Richard Kreis @kreisr1
RT @RieOfLetters: T1: Shame comes from many places- not being able to do things we want, invisibility of illness, that it's all in your hea…
Richard Kreis @kreisr1
RT @Clara_Health: A3: We see empowered patients talk about their disease publicly. We admire their strength in overcoming shame to help oth…
Richard Kreis @kreisr1
RT @LifeAccrdingLiz: I'm Liz and represent quite a few rarely known and #rarediseases. #patientchat
Richard Kreis @kreisr1
RT @MightyCasey: [runs in late - writing on deadline!] HI!!! #patientchat
Rheumatoid Patient @rheumpatient
RT @yourgpsdoc: T1: Shame prohibits patients and doctors from engaging in meaningful conversations & often prevents patients from s…
Your GPS Doc, LLC @yourgpsdoc
RT @melissarvh: A4 I think some patients have been hurt by unkind family members & friends & treated with a lack of empathy by some provide…
Richard Kreis @kreisr1
RT @AnnePolta: Research actually has shown that women's symptoms aren't always taken as seriously as men's. #patientchat https://t.co/QqvQq…
Richard Kreis @kreisr1
RT @Elizabe85727641: T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patien
Your GPS Doc, LLC @yourgpsdoc
RT @TheKyleMurray: A4) We naturally compare ourselves to others, even though we aren't the same. "They're doing better" = "I must be wrong.…
Richard Kreis @kreisr1
RT @power4patients: Let's not forget shame felt by #caregivers when they struggle with providing care & the burnout that often comes with i…
Kimberly Amelia @fireflyrn84
A.M.E.N. #PatientChat https://t.co/CYuqMQS7pz
Richard Kreis @kreisr1
RT @IFFGD: A1 Shame and stigma are significant barriers to obtaining an accurate diagnosis & proper care for many pts. #patientchat
Richard Kreis @kreisr1
RT @abrewi3010: T2 shame has prevented me from seeking #Mentalhealth help on several occasions. #PatientChat
Richard Kreis @kreisr1
RT @fireflyrn84: T1: Numerous roles; to an extent shame and preconceived notions can go hand in hand some conditions. HCP perception and pu…
Richard Kreis @kreisr1
RT @fireflyrn84: T1: Can be big with family and friends also; mostly because of how they are perceived being around someone sick.. #patien
Richard Kreis @kreisr1
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hr. You can engage w/others…
Richard Kreis @kreisr1
RT @Elizabe85727641: T2 Shame = not taking care of self/self-reporting was personal burden till someone listened to me & practiced Pt-cente…
Stroke Tattler @Stroketattler
@Elizabe85727641 T4 Shame because you are different? -- Seligman's personal, permanent, and pervasive? #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: T1 I can't speak to all conditions, but in life style conditions like stroke, pts essentially "to blame" for their condi…
Breakthrough Crew @brkthrough_crew
@yourgpsdoc Sadly many #minority groups are #marginalized in healthcare. #patientchat
Richard Kreis @kreisr1
RT @power4patients: Shame&stigma often debilitating as symptoms @lil_lytnin talks about it& you won't soon forget her words https://t.co/2F…
Rheumatoid Patient @rheumpatient
RT @bbhomebody: T1 Sadly, shame is huge. For feeling awful, not working, taking meds, loss of functioning, needing assistance. #patientchat
Richard Kreis @kreisr1
RT @lisadbudzinski: T3 Not being believed or compared to so&so who had the same but better now 😳 #patientchat https://t.co/nyyWJ5reNa
Richard Kreis @kreisr1
RT @fireflyrn84: Shame actually can have an impact on mortality/morbidity statistics if we looked further, d/t not seeking care…
Vida @vida
@patientchat A1 Patients and clients may feel embarrassed to ask questions. It is our job to make them feel comfortable. #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: T2: Shame hasn’t prevented me from seeking treatment, but prevented me from being able to access svcs d/t how my spouse se…
SassyPantsTheGoat @caighty
RT @IFFGD: A3 Accusations of "faking" or "drug-seeking" are very damaging for those suffering w/ a chronic and/or invisible illness. #patie
Richard Kreis @kreisr1
RT @lisadbudzinski: This👇! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.c…
Team Intake.Me @Intakeme
T5 I have learned to talk about it. “Darkness cannot drive out darkness: only light can do that.“ MLK Jr. #patientchat
Richard Kreis @kreisr1
RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Vida @vida
RT @Intakeme: T1. Shame can prevent people from getting the care they need & can prevent them from fully communicating their symptoms. #pat
Richard Kreis @kreisr1
RT @power4patients: T3 I experienced shame as a caregiver. Wanted to scream "I can't do this anymore!" to everyone I met, depression soon f…
Richard Kreis @kreisr1
RT @bbhomebody: T1 Sadly, shame is huge. For feeling awful, not working, taking meds, loss of functioning, needing assistance. #patientchat
Richard Kreis @kreisr1
RT @patientchat: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat
Eat - Sleep - Yoga @_iheartyoga
I Love Yoga Pants Grab it=> https://t.co/AUbLM8cnZQ #iloveyogar #yogaclothing #yogahoodies #yogaleggings #patientchat https://t.co/GHx28GermJ
Rie Lopez, MPH @RieOfLetters
T4: Some of it disposition, but most is social conditioning & expectations where the 'norm' is wellness and 'stiff upper lip'. #patientchat
Richard Kreis @kreisr1
RT @abrewi3010: T1 I don't think shame is exclusive to healthcare, I think shame is an untreated symptom of being a chronic patient in life…
Richard Kreis @kreisr1
RT @Intakeme: This is a crucial point. Patients should never be blamed for their condition. It hurts and discourages sharing.…
Richard Kreis @kreisr1
RT @fireflyrn84: T3: Weight is a huge source of shame. Various meds by themselves cause issues. Pathophysiology is huge w/disease. Many una…
Richard Kreis @kreisr1
RT @patientchat: T1: What role does shame play in healthcare for patients? #patientchat
Richard Kreis @kreisr1
RT @patientchat: T3: What are your experiences of disease and the issue of shame? #patientchat
Mighty Casey Quinlan @MightyCasey
@Clara_Health @RieOfLetters I'll flip that, say YES, we all DO need to "hold our own" at point of care. By participating, pushing back on paternalism. #patientchat
Anne Polta @annepolta
T4 Doing the research helps give me context. Many long-term cancer survivors have issues, so I know it isn't just me. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@power4patients And that’s a huge part of being a caretaker/caregiver or Ptis the depression & anxiety that HCPs aren’t aware of #PatientChat
Melissa VanHouten @melissarvh
A5 You must know your own worth & understand that those "shaming" are the ones at fault. I try 2 build up others & offer safety #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @bbhomebody: T4 We're programmed to go go go. When we can't go anymore, we take it personally, even though we shouldn't. We Shame oursel…
Vida @vida
A4 Some may feel more shame than others due to past experiences or trauma. #patientchat
Richard Kreis @kreisr1
RT @brkthrough_crew: @IFFGD Patients don't have the energy to constantly "prove" their illness is real. Why would they lie about being s…
Richard Kreis @kreisr1
RT @power4patients: @Clara_Health Exactly! #patientchat
Clara @Clara_Health
@Elizabe85727641 How do we give patients the power? We try to provide education and resources to help. What do you suggest? #patientchat #patientshavepower
Richard Kreis @kreisr1
RT @TheKyleMurray: A4) We naturally compare ourselves to others, even though we aren't the same. "They're doing better" = "I must be wrong.…
Richard Kreis @kreisr1
RT @fireflyrn84: I think women are seen as more concerned/anxious and don’t necessary get the correct care. Also symptoms differ me…
Kimberly Amelia @fireflyrn84
T5: Talk with others and let them express their feelings, be that shoulder for someone to lean on. Makes the dx process easier #patientchat
Richard Kreis @kreisr1
RT @LifeAccrdingLiz: A3: That I was "exaggerating"... I sometimes use my Phone to document orthostatic BPs if they are normal in docs offi…
Rheumatoid Patient @rheumpatient
RT @lisadbudzinski: This👇! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.c…
Stroke Tattler @Stroketattler
@Intakeme T5 learning to talk about it can normalize it for others-- make them believe that they are worthy, not alone #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: T4-- I think shame has lots to do how others position you and how the condition is stigmatized/ socially constructed. #p
Richard Kreis @kreisr1
RT @brkthrough_crew: @melissarvh We have heard horror stories of patients (specifically LGBTQ and female) being sexually shamed without…
Richard Kreis @kreisr1
RT @patientchat: Topic 5 (T5:) coming up... https://t.co/40Js21RTUn #patientchat
Richard Kreis @kreisr1
RT @Intakeme: T4. There is immense pressure for patients when at doctor visit to rush through visit. Many feel shame for needing > time. #p
Richard Kreis @kreisr1
RT @patientchat: T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat
Richard Kreis @kreisr1
RT @Elizabe85727641: T3 Shame & guilt seem to pervade societies, especially for women who lack physical/$$/Cultural Power or precedent. #pa
Richard Kreis @kreisr1
RT @lisadbudzinski: This👇! The few ruin it for the many. Comparing is very judgmental #patientchat https://t.co/qVjA9tmisL
Richard Kreis @kreisr1
RT @TheKyleMurray: A4B) For me, "Millennial" jokes about us not being tough has shamed me into trying to go it alone and not seek help. #pa
Vida @vida
A5 Our #vidacoaches are trained to show empathy and kindness. #patientchat
Angela Cohen @angelee828
@brkthrough_crew Definitely! I have found talking to other patients has helped immensely and finding providers I can communicate with honestly. #patientchat
Richard Kreis @kreisr1
RT @Elizabe85727641: T4 Pt feel shame because lack power, support, knowledge and do not meet traditional role expectations #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: T4: Those of us who have always had chronic conditions are used to seeking care and dismiss it. New pts may feel more sham…
Richard Kreis @kreisr1
RT @bbhomebody: T4 We're programmed to go go go. When we can't go anymore, we take it personally, even though we shouldn't. We Shame oursel…
Your GPS Doc, LLC @yourgpsdoc
T5: I am a pediatrician and tellall of my adolescents there is nothing they can tell me that will shock me. I need the truth. #patientchat https://t.co/kLzEsxpWYo
Becky Brandt RN @bbhomebody
T5# By finding pts like me I somwhow feel validated.There's no reason to feel shame about an illness I didn't choose #patientchat
Richard Kreis @kreisr1
RT @abrewi3010: T5 I try to be a big brother to however needs a friendly and safe shoulder. Friendship is the antidote to shame. #patientch
Lisa Davis Budzinski @lisadbudzinski
Wow! This is a huge statement! #patientchat Let this one sink in a bit https://t.co/JWBBJMkwzD
Patient Chat @patientchat
Topic 6 (T6:) coming up... https://t.co/40Js21RTUn #patientchat
Richard Kreis @kreisr1
RT @MightyCasey: A4: Women are culturally conditioned to be ashamed of their bodies. One of a zillion reasons I'm an atheist, actually. #pa
Stroke Tattler @Stroketattler
@fireflyrn84 T5 Do you think that "talking with others #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: A.M.E.N. #PatientChat https://t.co/CYuqMQS7pz
Richard Kreis @kreisr1
RT @Stroketattler: @Elizabe85727641 T4 Shame because you are different? -- Seligman's personal, permanent, and pervasive? #patientchat
Richard Kreis @kreisr1
RT @brkthrough_crew: @yourgpsdoc Sadly many #minority groups are #marginalized in healthcare. #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T5 Persistence to increase knowledge, practice reflection/ outreach to others, listen to other stories to find common themes. #patientchat
Melissa VanHouten @melissarvh
A5 It is also helpful to know you are not alone & there are others who understand the difficulties & can talk, assist. #patientchat
Rie Lopez, MPH @RieOfLetters
@melissarvh I'm much better at doing this for others than myself. Alas, I am still a work in progress! #patientchat
Breakthrough Crew @brkthrough_crew
🙌 #patientchat #WeBreakthrough https://t.co/cDnUPJsxFJ
Richard Kreis @kreisr1
RT @RieOfLetters: T4: Some of it disposition, but most is social conditioning & expectations where the 'norm' is wellness and 'stiff upper…
Richard Kreis @kreisr1
RT @Intakeme: T5 I have learned to talk about it. “Darkness cannot drive out darkness: only light can do that.“ MLK Jr. #patientchat
Richard Kreis @kreisr1
RT @vida: @patientchat A1 Patients and clients may feel embarrassed to ask questions. It is our job to make them feel comfortable. #patien
Becky Brandt RN @bbhomebody
RT @melissarvh: A5 You must know your own worth & understand that those "shaming" are the ones at fault. I try 2 build up others & offer sa…
Richard Kreis @kreisr1
RT @lisadbudzinski: @power4patients And that’s a huge part of being a caretaker/caregiver or Ptis the depression & anxiety that HCPs ar…
Richard Kreis @kreisr1
RT @AnnePolta: T4 Doing the research helps give me context. Many long-term cancer survivors have issues, so I know it isn't just me. #patie
Richard Kreis @kreisr1
RT @MightyCasey: @Clara_Health @RieOfLetters I'll flip that, say YES, we all DO need to "hold our own" at point of care. By particip…
Richard Kreis @kreisr1
RT @Clara_Health: @Elizabe85727641 How do we give patients the power? We try to provide education and resources to help. What do you…
Richard Kreis @kreisr1
RT @melissarvh: A5 You must know your own worth & understand that those "shaming" are the ones at fault. I try 2 build up others & offer sa…
Richard Kreis @kreisr1
RT @vida: A4 Some may feel more shame than others due to past experiences or trauma. #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @Intakeme T5 learning to talk about it can normalize it for others-- make them believe that they are worthy, not alone #…
STELLAR Study @stellarstudy
T5 Sharing your experience and making health an open discussion helps to break the shame. #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: T5: Talk with others and let them express their feelings, be that shoulder for someone to lean on. Makes the dx process ea…
Richard Kreis @kreisr1
RT @vida: A5 Our #vidacoaches are trained to show empathy and kindness. #patientchat
Mighty Casey Quinlan @MightyCasey
General comment: here's how far I've moved from shame - an open-kimono #epatient #woke story: https://t.co/RTWpRD6J6J #patientchat
Richard Kreis @kreisr1
RT @yourgpsdoc: T5: I am a pediatrician and tellall of my adolescents there is nothing they can tell me that will shock me. I need…
Richard Kreis @kreisr1
RT @angelee828: @brkthrough_crew Definitely! I have found talking to other patients has helped immensely and finding providers I ca…
Liz Kennerley @LifeAccrdingLiz
A4: Unfortunately, young women are too often given the label of "too stressed" and written off as a result. #invisibleillness #patientchat
Richard Kreis @kreisr1
RT @lisadbudzinski: Wow! This is a huge statement! #patientchat Let this one sink in a bit https://t.co/JWBBJMkwzD
Richard Kreis @kreisr1
RT @bbhomebody: T5# By finding pts like me I somwhow feel validated.There's no reason to feel shame about an illness I didn't choose #patie
Patient Chat @patientchat
T6: How might we support more patients in overcoming shame around their health? #patientchat
Becky Brandt RN @bbhomebody
RT @RieOfLetters: T4: Some of it disposition, but most is social conditioning & expectations where the 'norm' is wellness and 'stiff upper…
Team Intake.Me @Intakeme
@vida No advertising during #patientchat please.
Richard Kreis @kreisr1
RT @Elizabe85727641: T5 Persistence to increase knowledge, practice reflection/ outreach to others, listen to other stories to find common…
Richard Kreis @kreisr1
RT @Stroketattler: @fireflyrn84 T5 Do you think that "talking with others #patientchat
Richard Kreis @kreisr1
RT @patientchat: Topic 6 (T6:) coming up... https://t.co/40Js21RTUn #patientchat
Vida @vida
A5 We must allow those in r care time 2 speak, think & be understood. As a #healthcoach it's best 2 repeat back what you heard. #patientchat
Richard Kreis @kreisr1
RT @brkthrough_crew: 🙌 #patientchat #WeBreakthrough https://t.co/cDnUPJsxFJ
Your GPS Doc, LLC @yourgpsdoc
RT @TheKyleMurray: @brkthrough_crew I think we can be more mindful that everyone is on their own journey and offer support in any way we ca…
Richard Kreis @kreisr1
RT @RieOfLetters: @melissarvh I'm much better at doing this for others than myself. Alas, I am still a work in progress! #patientchat
Richard Kreis @kreisr1
RT @melissarvh: A5 It is also helpful to know you are not alone & there are others who understand the difficulties & can talk, assist. #pat
Kyle Murray @thekylemurray
@lisadbudzinski I don't feel this way anymore, but I did for a long time. The desperate need to "prove myself." #patientchat
Melissa VanHouten @melissarvh
@RieOfLetters I think we are all works in progress. :) You are fabulous! #patientchat
Clara @Clara_Health
A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empowered. #patientchat
Kimberly Amelia @fireflyrn84
Don’t compare me to the drug seekers. Compare me to ME and that alone. #PatientChat https://t.co/j3SmT31Ers
Richard Kreis @kreisr1
RT @StellarStudy: T5 Sharing your experience and making health an open discussion helps to break the shame. #patientchat
Richard Kreis @kreisr1
RT @MightyCasey: General comment: here's how far I've moved from shame - an open-kimono #epatient #woke story: https://t.co/RTWpRD6J6J #pa
Vida @vida
A6 Sharing more information and showing empathy will allow others to open up more. #patientchat
Stroke Tattler @Stroketattler
@Intakeme Sorry, Think "talking about it" might mean some referral to online patient groups, mentoring, or patient navigator? #patientchat
IFFGD @IFFGD
A6 Educating the general public about these conditions and the burden they pose is critical #patientchat
Becky Brandt RN @bbhomebody
RT @vida: A5 We must allow those in r care time 2 speak, think & be understood. As a #healthcoach it's best 2 repeat back what you heard. #…
Lisa Davis Budzinski @lisadbudzinski
RT @vida: A5 Our #vidacoaches are trained to show empathy and kindness. #patientchat
Melissa VanHouten @melissarvh
RT @Clara_Health: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empo…
Richard Kreis @kreisr1
RT @patientchat: T6: How might we support more patients in overcoming shame around their health? #patientchat
Richard Kreis @kreisr1
RT @LifeAccrdingLiz: A4: Unfortunately, young women are too often given the label of "too stressed" and written off as a result. #invisible
Melissa VanHouten @melissarvh
RT @StellarStudy: T5 Sharing your experience and making health an open discussion helps to break the shame. #patientchat
Richard Kreis @kreisr1
RT @vida: A5 We must allow those in r care time 2 speak, think & be understood. As a #healthcoach it's best 2 repeat back what you heard. #…
Richard Kreis @kreisr1
RT @Intakeme: @vida No advertising during #patientchat please.
Your GPS Doc, LLC @yourgpsdoc
I agree. "Suck it up" is never appropriate in healthcare. #patientchat https://t.co/q47E4EfNI9
Richard Kreis @kreisr1
RT @Clara_Health: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empo…
Richard Kreis @kreisr1
RT @melissarvh: @RieOfLetters I think we are all works in progress. :) You are fabulous! #patientchat
Richard Kreis @kreisr1
RT @TheKyleMurray: @lisadbudzinski I don't feel this way anymore, but I did for a long time. The desperate need to "prove myself." #patient
Team Intake.Me @Intakeme
RT @patientchat: T6: How might we support more patients in overcoming shame around their health? #patientchat
Rie Lopez, MPH @RieOfLetters
@melissarvh Thank you for saying that. I appreciate it! #patientchat https://t.co/tS7QoM1EmP
Lisa Davis Budzinski @lisadbudzinski
T5 It’s important to let others know you’ve been there, you know what it’s like & help to show how to deal with it #PatientChat https://t.co/Nr5Ck28eq4
Richard Kreis @kreisr1
RT @fireflyrn84: Don’t compare me to the drug seekers. Compare me to ME and that alone. #PatientChat https://t.co/j3SmT31Ers
Richard Kreis @kreisr1
RT @vida: A6 Sharing more information and showing empathy will allow others to open up more. #patientchat
Rheumatoid Patient @rheumpatient
@RieOfLetters ☹️I have to say I didn't mention my knee pain to my GP in addition to my shoulder pain as thought I wouldn't be believed. (1/2) #patientchat
Vida @vida
RT @Intakeme: T5 I have learned to talk about it. “Darkness cannot drive out darkness: only light can do that.“ MLK Jr. #patientchat
Kimberly Amelia @fireflyrn84
@Stroketattler I meant if having shane feelings, can be easier to talk it out and express them instead of holding it in #patientchat
Stroke Tattler @Stroketattler
@TheKyleMurray @lisadbudzinski Absolutely-- "prove self" is associated with individual responsibility "you need to try harder" #patientchat
Alan Brewington @abrewi3010
T6 by working together. Let's form a #arthritis #crohns #cancer #narcolepsy #diabetes antishame CoOp for example. #patientchat
Clara @Clara_Health
When the patients answer #industry #Doctors #researchers #caregivers and the world should listen! Really #listen. #patientchat https://t.co/raxEG168bR
Patient Empowerment @power4patients
@Intakeme Talking about it is the only way through. It only took someone to validate my feelings & I felt the weight lifting #patientchat
Your GPS Doc, LLC @yourgpsdoc
This makes me very sad. We must do better. #patientchat https://t.co/baYq17HgTh
Healthcare Scene @HealthcareScene
In case you missed today's #HITsm chat on Patient Burnout hosted by @GilmerHealthLaw Transcript is: https://t.co/26UaoQZgrj #patientchat
Richard Kreis @kreisr1
RT @IFFGD: A6 Educating the general public about these conditions and the burden they pose is critical #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @Intakeme Sorry, Think "talking about it" might mean some referral to online patient groups, mentoring, or patient navi…
Richard Kreis @kreisr1
RT @RieOfLetters: @melissarvh Thank you for saying that. I appreciate it! #patientchat https://t.co/tS7QoM1EmP
Richard Kreis @kreisr1
RT @yourgpsdoc: I agree. "Suck it up" is never appropriate in healthcare. #patientchat https://t.co/q47E4EfNI9
NR Lines @nr_lines
RT @brkthrough_crew: This is alarmingly true! Patients are sometimes too ashamed to even admit it to themselves, let alone ask for help.…
Becky Brandt RN @bbhomebody
T6 We must let new pts express their feelings then reassure them by sharing our own pt experiences #patientchat
Team Intake.Me @Intakeme
T6 Discussions like this are important to let more patients and caregivers not feel shame. #patientchat
Stroke Tattler @Stroketattler
@fireflyrn84 @Stroketattler Okay, but I would say sharing can normalize, help someone to re-frame negativity of shame #patientchat
Mary MACK @MaryOCMack
T6: by saying your chronic condition could just as easily be mine. It's not your fault #patientchat
Melissa VanHouten @melissarvh
A6 Take some of the burden off patients & push/lobby providers & others involved in medical care 4 change.They don't get a pass #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T6 Create Open, welcoming environment that offers listening, reflection, connection & follow-up. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@TheKyleMurray In my generation it was all about “suck it up & deal with it” #patientchat Generational thoughts are interesting #PatientChat
Patient Empowerment @power4patients
RT @MaryOCMack: T6: by saying your chronic condition could just as easily be mine. It's not your fault #patientchat
Becky Brandt RN @bbhomebody
RT @abrewi3010: T6 by working together. Let's form a #arthritis #crohns #cancer #narcolepsy #diabetes antishame CoOp for example. #patientc
Richard Kreis @kreisr1
RT @lisadbudzinski: T5 It’s important to let others know you’ve been there, you know what it’s like & help to show how to deal with it…
Vida @vida
RT @Clara_Health: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empo…
IFFGD @IFFGD
RT @Elizabe85727641: T6 Create Open, welcoming environment that offers listening, reflection, connection & follow-up. #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: @Stroketattler I meant if having shane feelings, can be easier to talk it out and express them instead of holding it in #p
Richard Kreis @kreisr1
RT @Clara_Health: When the patients answer #industry #Doctors #researchers #caregivers and the world should listen! Really #listen.…
Richard Kreis @kreisr1
RT @abrewi3010: T6 by working together. Let's form a #arthritis #crohns #cancer #narcolepsy #diabetes antishame CoOp for example. #patientc
Stroke Tattler @Stroketattler
@MaryOCMack yes! #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @TheKyleMurray @lisadbudzinski Absolutely-- "prove self" is associated with individual responsibility "you need to try h…
burtrosen @burtrosen
have to jump out for a meeting, sorry to miss the rest! have a great weekend everyone #patientchat
Richard Kreis @kreisr1
RT @power4patients: @Intakeme Talking about it is the only way through. It only took someone to validate my feelings & I felt the weight li…
Clara @Clara_Health
A5: The best thing to do is genuinely listen to what the patients need & work to meet them. So patients, tell us what you need! #patientchat
Richard Kreis @kreisr1
RT @yourgpsdoc: This makes me very sad. We must do better. #patientchat https://t.co/baYq17HgTh
Melissa VanHouten @melissarvh
RT @IFFGD: A6 Educating the general public about these conditions and the burden they pose is critical #patientchat
Mighty Casey Quinlan @MightyCasey
A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat
Kyle Murray @thekylemurray
@lisadbudzinski I think all that stuff is very fixed mindset. Labels that help people feel better about themselves. I'm more growth-minded now. #patientchat
Richard Kreis @kreisr1
RT @Intakeme: T6 Discussions like this are important to let more patients and caregivers not feel shame. #patientchat
Richard Kreis @kreisr1
RT @bbhomebody: T6 We must let new pts express their feelings then reassure them by sharing our own pt experiences #patientchat
Your GPS Doc, LLC @yourgpsdoc
T6: By showing empathy and compassion and through chats like this! #patientchat https://t.co/s9XAboYA2A
Richard Kreis @kreisr1
RT @HealthcareScene: In case you missed today's #HITsm chat on Patient Burnout hosted by @GilmerHealthLaw Transcript is: https://t.co/26Uao…
Becky Brandt RN @bbhomebody
@abrewi3010 The ACCNDA CoOp. LOL 👍#patientchat
Anne Polta @annepolta
T6 It's really important for health care professionals to be educated. Judginess from them can be especially harmful. #patientchat
Richard Kreis @kreisr1
RT @MaryOCMack: T6: by saying your chronic condition could just as easily be mine. It's not your fault #patientchat
Kimberly Amelia @fireflyrn84
@Stroketattler I agree, reframing is what should be done. Shame isn’t something that anyone should feel. #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @fireflyrn84 @Stroketattler Okay, but I would say sharing can normalize, help someone to re-frame negativity of shame #p
Patient Chat @patientchat
Topic 7 (T7:) coming up... https://t.co/40Js21RTUn #patientchat
Rheumatoid Patient @rheumpatient
@RieOfLetters Orthopaedics asked if pain in other joints & referred me to rheumatology. Relief to get RA diagnosis i.e. not in my head. (2/2) #patientchat
Alan Brewington @abrewi3010
T6 let's kill the stereotype of what a patient should be and remember we are all humans that are hurting. #patientchat
Richard Kreis @kreisr1
RT @lisadbudzinski: @TheKyleMurray In my generation it was all about “suck it up & deal with it” #patientchat Generational thoughts are int…
Erin Gilmer @GilmerHealthLaw
RT @HealthcareScene: In case you missed today's #HITsm chat on Patient Burnout hosted by @GilmerHealthLaw Transcript is: https://t.co/26Uao…
Richard Kreis @kreisr1
RT @Elizabe85727641: T6 Create Open, welcoming environment that offers listening, reflection, connection & follow-up. #patientchat
Richard Kreis @kreisr1
RT @melissarvh: A6 Take some of the burden off patients & push/lobby providers & others involved in medical care 4 change.They don't get a…
Rie Lopez, MPH @RieOfLetters
T6: Share our stories and step out from the shadows. This helps ourselves and others feel less alone and/or 'othered'. #patientchat
Richard Kreis @kreisr1
RT @Clara_Health: A5: The best thing to do is genuinely listen to what the patients need & work to meet them. So patients, tell us what you…
Richard Kreis @kreisr1
RT @burtrosen: have to jump out for a meeting, sorry to miss the rest! have a great weekend everyone #patientchat
Richard Kreis @kreisr1
RT @Stroketattler: @MaryOCMack yes! #patientchat
Melissa VanHouten @melissarvh
RT @RieOfLetters: T6: Share our stories and step out from the shadows. This helps ourselves and others feel less alone and/or 'othered'. #…
Richard Kreis @kreisr1
RT @yourgpsdoc: T6: By showing empathy and compassion and through chats like this! #patientchat https://t.co/s9XAboYA2A
Richard Kreis @kreisr1
RT @TheKyleMurray: @lisadbudzinski I think all that stuff is very fixed mindset. Labels that help people feel better about themselves.…
Richard Kreis @kreisr1
RT @MightyCasey: A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat
Richard Kreis @kreisr1
RT @bbhomebody: @abrewi3010 The ACCNDA CoOp. LOL 👍#patientchat
Breakthrough Crew @brkthrough_crew
#patientsfirst #patientchat https://t.co/taxHG8GFhK
Richard Kreis @kreisr1
RT @AnnePolta: T6 It's really important for health care professionals to be educated. Judginess from them can be especially harmful. #patie
Richard Kreis @kreisr1
RT @fireflyrn84: @Stroketattler I agree, reframing is what should be done. Shame isn’t something that anyone should feel. #patientchat
Richard Kreis @kreisr1
RT @patientchat: Topic 7 (T7:) coming up... https://t.co/40Js21RTUn #patientchat
Richard Kreis @kreisr1
RT @rheumpatient: @RieOfLetters Orthopaedics asked if pain in other joints & referred me to rheumatology. Relief to get RA diagnosis…
Vida @vida
@abrewi3010 We need to make sure our #caregivers get some time off too plus time for daily #selfcare. #patientchat
Patient Chat @patientchat
T7: How can we destigmatize diseases? #patientchat
Richard Kreis @kreisr1
RT @brkthrough_crew: #patientsfirst #patientchat https://t.co/taxHG8GFhK
Richard Kreis @kreisr1
RT @RieOfLetters: T6: Share our stories and step out from the shadows. This helps ourselves and others feel less alone and/or 'othered'. #…
Team Intake.Me @Intakeme
RT @AnnePolta: T6 It's really important for health care professionals to be educated. Judginess from them can be especially harmful. #patie
Breakthrough Crew @brkthrough_crew
Amazing perspective. How can we share this with the rest of the world!!! #patientchat https://t.co/ilZCXRP9ET
Richard Kreis @kreisr1
RT @abrewi3010: T6 let's kill the stereotype of what a patient should be and remember we are all humans that are hurting. #patientchat
Alan Brewington @abrewi3010
RT @MightyCasey: A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat
Vida @vida
RT @RieOfLetters: #caregivers need a lot more support! We are not angels, we're humans. #patientchat https://t.co/UkafMTfg4F
Rheumatoid Patient @rheumpatient
RT @angelee828: T1: Can be isolating whether put it on myself or something said by HCP/others. Affects self image & makes it harder 2 open…
Richard Kreis @kreisr1
RT @patientchat: T7: How can we destigmatize diseases? #patientchat
Richard Kreis @kreisr1
RT @vida: @abrewi3010 We need to make sure our #caregivers get some time off too plus time for daily #selfcare. #patientchat
Stroke Tattler @Stroketattler
@lisadbudzinski @TheKyleMurray LOL yes everyone-- Micheal Prince calls those without disability the "temporarily abled" #patientchat
Vida @vida
RT @Intakeme: This is a crucial point. Patients should never be blamed for their condition. It hurts and discourages sharing.…
Richard Kreis @kreisr1
RT @brkthrough_crew: Amazing perspective. How can we share this with the rest of the world!!! #patientchat https://t.co/ilZCXRP9ET
Kyle Murray @thekylemurray
@lisadbudzinski It's the same kind of shame that prevents our kids from raising their hands and asking for help in school. #patientchat
Patient Empowerment @power4patients
RT @MightyCasey: A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat
Alan Brewington @abrewi3010
RT @vida: @abrewi3010 We need to make sure our #caregivers get some time off too plus time for daily #selfcare. #patientchat
Clara @Clara_Health
RT @brkthrough_crew: Amazing perspective. How can we share this with the rest of the world!!! #patientchat https://t.co/ilZCXRP9ET
Vida @vida
RT @yourgpsdoc: T5: I am a pediatrician and tellall of my adolescents there is nothing they can tell me that will shock me. I need…
Kimberly Amelia @fireflyrn84
Exactly, patients holding anything back can have negative impact on care. Need all details for comprehensive care #Patientchat https://t.co/K13mRToueb
Rie Lopez, MPH @RieOfLetters
@rheumpatient For me, a diagnosis meant everything. I had a name for my strange and terrifying symptoms. I SO get this! #patientchat
Rheumatoid Patient @rheumpatient
RT @power4patients: Let's not forget shame felt by #caregivers when they struggle with providing care & the burnout that often comes with i…
Team Intake.Me @Intakeme
T6 Train reception/billing too! How many times I have felt nervous to call doc when unable to pay when I was a single mom. #patientchat
Richard Kreis @kreisr1
RT @TheKyleMurray: @lisadbudzinski It's the same kind of shame that prevents our kids from raising their hands and asking for help in schoo…
Lisa Davis Budzinski @lisadbudzinski
@Stroketattler @TheKyleMurray Yes because everyone becomes a Pt. Just a matter of time #PatientChat
Richard Kreis @kreisr1
RT @Stroketattler: @lisadbudzinski @TheKyleMurray LOL yes everyone-- Micheal Prince calls those without disability the "temporarily abled"…
Patient Empowerment @power4patients
RT @abrewi3010: T6 let's kill the stereotype of what a patient should be and remember we are all humans that are hurting. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @AnnePolta: T6 It's really important for health care professionals to be educated. Judginess from them can be especially harmful. #patie
Kyle Murray @thekylemurray
@lisadbudzinski It's been a journey, but I look at it as obstacles overcome and current challenges to be navigated. Let's do it. #patientchat
Richard Kreis @kreisr1
RT @fireflyrn84: Exactly, patients holding anything back can have negative impact on care. Need all details for comprehensive care…
Your GPS Doc, LLC @yourgpsdoc
RT @abrewi3010: T6 let's kill the stereotype of what a patient should be and remember we are all humans that are hurting. #patientchat
Kyle Murray @thekylemurray
@lisadbudzinski @Stroketattler This is especially true of hospice/EOL and elderly care. You just never know. #patientchat
Becky Brandt RN @bbhomebody
@MaryOCMack YES! You never know when you'll become the patient! #patientchat
Rie Lopez, MPH @RieOfLetters
RT @brkthrough_crew: Amazing perspective. How can we share this with the rest of the world!!! #patientchat https://t.co/ilZCXRP9ET
Clara @Clara_Health
@abrewi3010 Bringing the #humanity back to healthcare will fix a lot of the current problems. #patientchat
Team Intake.Me @Intakeme
This is a big question but one definitely worth examining! #Patientchat https://t.co/HvkMkWiN52
Richard Kreis @kreisr1
RT @TheKyleMurray: @lisadbudzinski It's been a journey, but I look at it as obstacles overcome and current challenges to be navigated.…
Richard Kreis @kreisr1
RT @lisadbudzinski: @Stroketattler @TheKyleMurray Yes because everyone becomes a Pt. Just a matter of time #PatientChat
Lisa Davis Budzinski @lisadbudzinski
RT @Clara_Health: A5: The best thing to do is genuinely listen to what the patients need & work to meet them. So patients, tell us what you…
Alan Brewington @abrewi3010
T7 Quit putting positive &/or negative labels on moments. They are chapters in a continuous story that isn't done #Patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @patientchat: This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat
Becky Brandt RN @bbhomebody
RT @lisadbudzinski: @Stroketattler @TheKyleMurray Yes because everyone becomes a Pt. Just a matter of time #PatientChat
Patient Empowerment @power4patients
@MightyCasey Sunlight. I couldn't agree more #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @Clara_Health: A5: The best thing to do is genuinely listen to what the patients need & work to meet them. So patients, tell us what you…
Rheumatoid Patient @rheumpatient
@LifeAccrdingLiz Pretty sure men have it too but perhaps keep it to themselves more? #patientchat
Lisa Davis Budzinski @lisadbudzinski
@burtrosen You too Burt! ✨ #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
Sorry I'm very very late & missed most of it. grandma's 88th birthday so she's here & I wasn't able to participate till now #patientchat
Stroke Tattler @Stroketattler
T7- Not-for-profit orgs could stop stigmatizing conditions by blaming indivd. e.g. HSF Make health last https://t.co/g5hzrzvKoO #patientchat
Rie Lopez, MPH @RieOfLetters
I LOVE THIS! #patientchat https://t.co/eRn8PasEdQ
Liz Kennerley @LifeAccrdingLiz
A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #patientchat
Helen Findlay @helenfindlay
RT @fireflyrn84: Shame actually can have an impact on mortality/morbidity statistics if we looked further, d/t not seeking care…
Clara @Clara_Health
@lisadbudzinski @Stroketattler @TheKyleMurray We've been thinking about how to make those who have not yet encountered illness understand. #patientchat https://t.co/IFWWIdYt4y -Thoughts?
Richard Kreis @kreisr1
RT @bbhomebody: @MaryOCMack YES! You never know when you'll become the patient! #patientchat
Helen Findlay @helenfindlay
RT @Clara_Health: @patientchat A1: So many illnesses are stigmatized in society, leaving patients at risk of avoiding seeking treatme…
Richard Kreis @kreisr1
RT @TheKyleMurray: @lisadbudzinski @Stroketattler This is especially true of hospice/EOL and elderly care. You just never know. #patientchat
Richard Kreis @kreisr1
RT @Intakeme: This is a big question but one definitely worth examining! #Patientchat https://t.co/HvkMkWiN52
Richard Kreis @kreisr1
RT @Clara_Health: @abrewi3010 Bringing the #humanity back to healthcare will fix a lot of the current problems. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Intakeme: T1. Shame can prevent people from getting the care they need & can prevent them from fully communicating their symptoms. #pat
Richard Kreis @kreisr1
RT @rheumpatient: @LifeAccrdingLiz Pretty sure men have it too but perhaps keep it to themselves more? #patientchat
Helen Findlay @helenfindlay
RT @abrewi3010: T1 I don't think shame is exclusive to healthcare, I think shame is an untreated symptom of being a chronic patient in life…
STELLAR Study @stellarstudy
This is an ongoing issue. Creating a safe space for patients to speak up and share their experience is a start. #patientchat #btsm https://t.co/XoPdKEjqo2
Your GPS Doc, LLC @yourgpsdoc
T7: Unfortunately, many don't understand untilnit impacts them or a family member. We need more patient voices at the table. #patientchat https://t.co/eXtqOkUk4m
Stroke Tattler @Stroketattler
@LifeAccrdingLiz #patientchat
Patient Chat @patientchat
RT @abrewi3010: T7 Quit putting positive &/or negative labels on moments. They are chapters in a continuous story that isn't done #Patientc
Melissa VanHouten @melissarvh
A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgment. #patientchat
Team Intake.Me @Intakeme
@LucyAlexandria Happy birthday 88! 🎂🎉 #patientchat
Helen Findlay @helenfindlay
RT @yourgpsdoc: T1: Shame prohibits patients and doctors from engaging in meaningful conversations & often prevents patients from s…
Helen Findlay @helenfindlay
RT @Intakeme: T1. Shame can prevent people from getting the care they need & can prevent them from fully communicating their symptoms. #pat
Richard Kreis @kreisr1
RT @power4patients: @MightyCasey Sunlight. I couldn't agree more #patientchat
IFFGD @IFFGD
RT @melissarvh: A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgm…
Richard Kreis @kreisr1
RT @abrewi3010: T7 Quit putting positive &/or negative labels on moments. They are chapters in a continuous story that isn't done #Patientc
Clara @Clara_Health
A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatment. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T1 Shame can be a barrier to seeking support. It can also be used by HCPs to force patients to act on their health though too #PatientChat https://t.co/6dhh7psLDT
Richard Kreis @kreisr1
RT @Stroketattler: T7- Not-for-profit orgs could stop stigmatizing conditions by blaming indivd. e.g. HSF Make health last https://t.co/g5h…
Richard Kreis @kreisr1
RT @LucyAlexandria: Sorry I'm very very late & missed most of it. grandma's 88th birthday so she's here & I wasn't able to participate till…
Richard Kreis @kreisr1
RT @lisadbudzinski: @burtrosen You too Burt! ✨ #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @yourgpsdoc: T1: Shame prohibits patients and doctors from engaging in meaningful conversations & often prevents patients from s…
Richard Kreis @kreisr1
RT @LifeAccrdingLiz: A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #pa
Lisa Davis Budzinski @lisadbudzinski
T7 Through awareness & spreading the word thru SoMe, in person etc Become a powerful voice to turn the tide. Work together #Patientchat https://t.co/O1GOiCNeWe
Richard Kreis @kreisr1
RT @RieOfLetters: I LOVE THIS! #patientchat https://t.co/eRn8PasEdQ
Team Intake.Me @Intakeme
RT @melissarvh: A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgm…
Richard Kreis @kreisr1
RT @Clara_Health: @lisadbudzinski @Stroketattler @TheKyleMurray We've been thinking about how to make those who have not yet encounte…
Stroke Tattler @Stroketattler
@LifeAccrdingLiz YES! The stigma and shame created by Individual responsibility for illness! #patientchat
Helen Findlay @helenfindlay
RT @IFFGD: A1 Shame and stigma are significant barriers to obtaining an accurate diagnosis & proper care for many pts. #patientchat
Richard Kreis @kreisr1
RT @StellarStudy: This is an ongoing issue. Creating a safe space for patients to speak up and share their experience is a start.…
Richard Kreis @kreisr1
RT @yourgpsdoc: T7: Unfortunately, many don't understand untilnit impacts them or a family member. We need more patient voices at t…
Helen Findlay @helenfindlay
RT @RieOfLetters: T2: When I was getting a lot of "must be psychological" feedback, I stopped talking about my pain symptoms entirely. #sha
Richard Kreis @kreisr1
RT @melissarvh: A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgm…
Helen Findlay @helenfindlay
RT @RieOfLetters: T1: Shame comes from many places- not being able to do things we want, invisibility of illness, that it's all in your hea…
Richard Kreis @kreisr1
RT @Stroketattler: @LifeAccrdingLiz #patientchat
Breakthrough Crew @brkthrough_crew
@LifeAccrdingLiz Who's to judge? How can anyone else no better than the patient!? They can't, and they shouldn't pretend to. It hurts QOL. #patientchat
Richard Kreis @kreisr1
RT @Intakeme: @LucyAlexandria Happy birthday 88! 🎂🎉 #patientchat
Helen Findlay @helenfindlay
RT @yourgpsdoc: I agree. "Suck it up" is never appropriate in healthcare. #patientchat https://t.co/q47E4EfNI9
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @abrewi3010: T1 I don't think shame is exclusive to healthcare, I think shame is an untreated symptom of being a chronic patient in life…
Helen Findlay @helenfindlay
RT @abrewi3010: T1 Shame is also a symptom for #caregivers too. Possible symptom of being burnt out or lack of self care. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Stroketattler: T1 I can't speak to all conditions, but in life style conditions like stroke, pts essentially "to blame" for their condi…
IFFGD @IFFGD
A7 Patients need to be recognized as key stakeholders & be empowered to make their health needs known 4 themselves & community. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @bbhomebody: T1 Sadly, shame is huge. For feeling awful, not working, taking meds, loss of functioning, needing assistance. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @burtrosen: T1: shame hits family members Ive seen lots of families feel shame or be in denial about #lyme #autism and other chronic iss…
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
RT @patientchat: T1: What role does shame play in healthcare for patients? #patientchat
Kimberly Amelia @fireflyrn84
We are more than our diseases, we are humans with feelings. We deserve respect and care. A little empathy goes a long ways #patientchat https://t.co/ctRyRwYitO
Anne Polta @annepolta
General media messages too. There's a lot of oversimplifying and "shoulds" and "shouldn'ts." #patientchat https://t.co/4JTParsRA2
Helen Findlay @helenfindlay
RT @Intakeme: This is a crucial point. Patients should never be blamed for their condition. It hurts and discourages sharing.…
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
RT @patientchat: This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Clara_Health: @patientchat A1: So many illnesses are stigmatized in society, leaving patients at risk of avoiding seeking treatme…
Richard Kreis @kreisr1
RT @LucyAlexandria: T1 Shame can be a barrier to seeking support. It can also be used by HCPs to force patients to act on their health…
Patient Empowerment @power4patients
RT @IFFGD: A7 Patients need to be recognized as key stakeholders & be empowered to make their health needs known 4 themselves & community.…
Becky Brandt RN @bbhomebody
T7 We need to treat EVERY PATIENT/DISEASE with respect, whether visible or not. BELIEVE them & just accept it! #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @RieOfLetters: T1: Shame comes from many places- not being able to do things we want, invisibility of illness, that it's all in your hea…
Helen Findlay @helenfindlay
RT @Clara_Health: @lisadbudzinski It's important for ALL to step back and recognize the diagnosis is no ones fault. Patients don't ch…
Richard Kreis @kreisr1
RT @Clara_Health: A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatmen…
Helen Findlay @helenfindlay
RT @lisadbudzinski: This👇! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.c…
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
RT @patientchat: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat
Mary MACK @MaryOCMack
T7: blaming and judging are a huge part of stigmatizing those with ill health. #patientchat
STELLAR Study @stellarstudy
Agreed. Show the good, the bad, and the ugly. A true 360 view of the disease. https://t.co/9VorRZtfRq
Breakthrough Crew @brkthrough_crew
A7: Patients, while all unique, are in it together to advocate for better care. Work together and support each other! #patientchat
Rie Lopez, MPH @RieOfLetters
@Stroketattler Yes! There are some things we can control and other things we can't. We must stop assuming control is the norm. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @LifeAccrdingLiz: A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #pa
Richard Kreis @kreisr1
RT @Stroketattler: @LifeAccrdingLiz YES! The stigma and shame created by Individual responsibility for illness! #patientchat
Richard Kreis @kreisr1
RT @lisadbudzinski: T7 Through awareness & spreading the word thru SoMe, in person etc Become a powerful voice to turn the tide. Work t…
Helen Findlay @helenfindlay
RT @bbhomebody: T1 Sadly, shame is huge. For feeling awful, not working, taking meds, loss of functioning, needing assistance. #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @Clara_Health: @lisadbudzinski @Stroketattler @TheKyleMurray We've been thinking about how to make those who have not yet encounte…
Helen Findlay @helenfindlay
RT @melissarvh: A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgm…
Richard Kreis @kreisr1
RT @brkthrough_crew: @LifeAccrdingLiz Who's to judge? How can anyone else no better than the patient!? They can't, and they shouldn't pr…
Stroke Tattler @Stroketattler
@AnnePolta YES simplifying the complex--The "that's good" "That's Bad" "Sad" #patientchat
Kimberly Amelia @fireflyrn84
T7: Work toward making it easier to have open conversations like this to discuss how we feel. The power of community is huge #patientchat
Helen Findlay @helenfindlay
RT @LucyAlexandria: T1 Shame can be a barrier to seeking support. It can also be used by HCPs to force patients to act on their health…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T2 I put on a lot of weight when I was first ill & felt ashamed. It made me reluctant 2 seek help as it was blamed on my weight #PatientChat https://t.co/tJWjBo19Fm
Helen Findlay @helenfindlay
RT @brkthrough_crew: Amazing perspective. How can we share this with the rest of the world!!! #patientchat https://t.co/ilZCXRP9ET
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Intakeme: This is a crucial point. Patients should never be blamed for their condition. It hurts and discourages sharing.…
Alan Brewington @abrewi3010
RT @Clara_Health: @abrewi3010 Bringing the #humanity back to healthcare will fix a lot of the current problems. #patientchat
Helen Findlay @helenfindlay
RT @Clara_Health: A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatmen…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @abrewi3010: T1 Shame is also a symptom for #caregivers too. Possible symptom of being burnt out or lack of self care. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Elizabe85727641: T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patien
Helen Findlay @helenfindlay
RT @LifeAccrdingLiz: A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #pa
Rheumatoid Patient @rheumpatient
@Intakeme @LifeAccrdingLiz There's been some interesting work on how #RA affects #men by @C_Flurey et al. https://t.co/h3eTzwDZMG #patientchat
Breakthrough Crew @brkthrough_crew
RT @fireflyrn84: T7: Work toward making it easier to have open conversations like this to discuss how we feel. The power of community is hu…
Mighty Casey Quinlan @MightyCasey
CT: Don't let anyone keep you from living your best life. Find your tribe, let them support/guide you to self-advocacy. #s4pm #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @Clara_Health: A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatmen…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @RieOfLetters: T2: When I was getting a lot of "must be psychological" feedback, I stopped talking about my pain symptoms entirely. #sha
Helen Findlay @helenfindlay
RT @abrewi3010: T6 let's kill the stereotype of what a patient should be and remember we are all humans that are hurting. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Clara_Health: @lisadbudzinski It's important for ALL to step back and recognize the diagnosis is no ones fault. Patients don't ch…
Melissa VanHouten @melissarvh
A7 I'm big on standing up against others' false perceptions, too. Must speak up & demand respect - combat unacceptable behavior #patientchat
Helen Findlay @helenfindlay
RT @RieOfLetters: T6: Share our stories and step out from the shadows. This helps ourselves and others feel less alone and/or 'othered'. #…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Clara_Health: @patientchat We offer a lot of options for patients and loved ones to seek treatment anonymously, so no patient is…
STELLAR Study @stellarstudy
CT: Put yourself in the patient's shoes and create a welcoming environment for them to share their concerns. #patientchat #btsm #cancer
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Intakeme: T2. I often felt I should be able to handle the pain and symptoms. Shame shows up in many ways. #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @fireflyrn84: T2: Shame hasn’t prevented me from seeking treatment, but prevented me from being able to access svcs d/t how my spouse se…
Melissa VanHouten @melissarvh
RT @StellarStudy: CT: Put yourself in the patient's shoes and create a welcoming environment for them to share their concerns. #patientchat
Melissa VanHouten @melissarvh
RT @MightyCasey: CT: Don't let anyone keep you from living your best life. Find your tribe, let them support/guide you to self-advocacy. #s
Team Intake.Me @Intakeme
CT I ❤️ how all of you cross the labels and silos to join together for these important discussions about our shared experiences #patientchat
Rie Lopez, MPH @RieOfLetters
The general media is a thorn in my side when it comes to communicating health. Oversimplified and splashy sells, unfortunately #patientchat https://t.co/hI3zOtU2qx
ElizabethKelly, Ph.D @Elizabe85727641
T7 Acknowledge multiple sides/causes to life events=wellness/disease, expected/unexpected events, “however, we shall overcome.” #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @fireflyrn84: We are more than our diseases, we are humans with feelings. We deserve respect and care. A little empathy goes a lo…
Helen Findlay @helenfindlay
RT @lisadbudzinski: T3 Not being believed or compared to so&so who had the same but better now 😳 #patientchat https://t.co/nyyWJ5reNa
Melissa VanHouten @melissarvh
RT @Elizabe85727641: T7 Acknowledge multiple sides/causes to life events=wellness/disease, expected/unexpected events, “however, we shall o…
Helen Findlay @helenfindlay
RT @Elizabe85727641: T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patien
Anne Polta @annepolta
Also applies to people's decisions/choices. Not everyone wants to be super-engaged. Not everyone wants hospice. #patientchat
Stroke Tattler @Stroketattler
@fireflyrn84 Community-- is the social constructor of shame, stigma and the reduction of shame & stigma of illness/disability #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T3 bowel problems always conjure up shame IMO. My gut failing, not being able to go to the loo - I felt ashamed to tell others #PatientChat https://t.co/mJvyGhB8CQ
Liz Kennerley @LifeAccrdingLiz
A6: Ask follow-up questions about our concern. Moving on to another system doesn't help anyone. #patientchat #RareDisease #invisibleillness
Helen Findlay @helenfindlay
RT @RieOfLetters: @bbhomebody Absolutely true, Becky! Sometimes, I've been unable to bathe or feed myself without help. It is crushing! #pa
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @power4patients: Let's not forget shame felt by #caregivers when they struggle with providing care & the burnout that often comes with i…
Helen Findlay @helenfindlay
RT @IFFGD: A1 For many, the emotional impact of shame & stigma may reduce their quality of life even more than their symptoms. #patientchat
Becky Brandt RN @bbhomebody
T7 Soc Sec & disability are among the worst! Proving your illness for years. Like we're all lazy & just wanted to quit work! #patientchat
Helen Findlay @helenfindlay
RT @abrewi3010: T2 shame has prevented me from seeking #Mentalhealth help on several occasions. #PatientChat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @yourgpsdoc: T2: This is a huge problem and very common. Providers must be more sensitive and stigma needs to be removed.…
Helen Findlay @helenfindlay
RT @melissarvh: A5 You must know your own worth & understand that those "shaming" are the ones at fault. I try 2 build up others & offer sa…
Helen Findlay @helenfindlay
RT @fireflyrn84: T7: Work toward making it easier to have open conversations like this to discuss how we feel. The power of community is hu…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @IFFGD: A3 We have found that shame is a significant barrier to care & emotional burden for those w/ fecal #incontinence. #patientchat
Helen Findlay @helenfindlay
RT @bbhomebody: T7 We need to treat EVERY PATIENT/DISEASE with respect, whether visible or not. BELIEVE them & just accept it! #patientchat
Richard Kreis @kreisr1
Interested in telling their story for my new book, “Your Caregiving or Disability Story” or “Your Not Alone.” Let me know #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Clara_Health: A3: We see empowered patients talk about their disease publicly. We admire their strength in overcoming shame to help oth…
Helen Findlay @helenfindlay
RT @LucyAlexandria: T2 I put on a lot of weight when I was first ill & felt ashamed. It made me reluctant 2 seek help as it was blamed…
Patient Empowerment @power4patients
RT @MightyCasey: CT: Don't let anyone keep you from living your best life. Find your tribe, let them support/guide you to self-advocacy. #s
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @RieOfLetters: This! The 'what if' game we play with ourselves holds us back from living our best life! #patientchat https://t.co/2OEvWl…
Richard Kreis @kreisr1
RT @bbhomebody: T7 We need to treat EVERY PATIENT/DISEASE with respect, whether visible or not. BELIEVE them & just accept it! #patientchat
Helen Findlay @helenfindlay
RT @lisadbudzinski: T7 Through awareness & spreading the word thru SoMe, in person etc Become a powerful voice to turn the tide. Work t…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @melissarvh: T3 I've never been ashamed of my illness but many in groups fear seeking care b/c they might be seen as "at fault" or "faki…
Richard Kreis @kreisr1
RT @brkthrough_crew: A7: Patients, while all unique, are in it together to advocate for better care. Work together and support each other!…
Helen Findlay @helenfindlay
RT @brkthrough_crew: A7: Patients, while all unique, are in it together to advocate for better care. Work together and support each other!…
Richard Kreis @kreisr1
RT @MaryOCMack: T7: blaming and judging are a huge part of stigmatizing those with ill health. #patientchat
Team Intake.Me @Intakeme
CT By sharing your experience, whether online or in person, you help raise the boat 🚣 for all patients. #patientchat
Rheumatoid Patient @rheumpatient
@Stroketattler I know what you mean, anytime a new problem I'm always told "that's because of your RA", even when it's highly unrelated! #patientchat
Richard Kreis @kreisr1
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
Hi, Christele here. I'm so sad I'm late and missing all this. #patientchat
Helen Findlay @helenfindlay
RT @Clara_Health: A5: The best thing to do is genuinely listen to what the patients need & work to meet them. So patients, tell us what you…
Richard Kreis @kreisr1
RT @RieOfLetters: @Stroketattler Yes! There are some things we can control and other things we can't. We must stop assuming control is the…
Stroke Tattler @Stroketattler
@Elizabe85727641 Stop simplifying complexity-- it is all individual responsibility #patientchat
Helen Findlay @helenfindlay
RT @yourgpsdoc: T7: Unfortunately, many don't understand untilnit impacts them or a family member. We need more patient voices at t…
Helen Findlay @helenfindlay
RT @Clara_Health: @lisadbudzinski @Stroketattler @TheKyleMurray We've been thinking about how to make those who have not yet encounte…
Your GPS Doc, LLC @yourgpsdoc
CT: No one wants to be sick and patient shaming prevents adequate care. Show compassion and let's work together. #patientchat
Alan Brewington @abrewi3010
CT as chronic patients we have all earned the right to bad days, weeks, months but we still have a right to a good life #patientchat
Helen Findlay @helenfindlay
RT @Intakeme: T2. I often felt I should be able to handle the pain and symptoms. Shame shows up in many ways. #patientchat
Clara @Clara_Health
CT: Patients & caregivers face huge emotional burdens. We work hard to make things easier- we encourage others to do the same! #patientchat
Team Intake.Me @Intakeme
@RieOfLetters Yes! Could we create media guidelines?! #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
T4 Personality? Those of us who are more sensitive, seem to feel more ashamed, worry about what if's, what others think etc #PatientChat https://t.co/o6crK7hqT0
Richard Kreis @kreisr1
RT @fireflyrn84: T7: Work toward making it easier to have open conversations like this to discuss how we feel. The power of community is hu…
Richard Kreis @kreisr1
RT @Stroketattler: @AnnePolta YES simplifying the complex--The "that's good" "That's Bad" "Sad" #patientchat
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @IFFGD: A3 Accusations of "faking" or "drug-seeking" are very damaging for those suffering w/ a chronic and/or invisible illness. #patie
Helen Findlay @helenfindlay
RT @Clara_Health: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empo…
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
RT @IFFGD: A1 Shame and stigma are significant barriers to obtaining an accurate diagnosis & proper care for many pts. #patientchat
Richard Kreis @kreisr1
RT @LucyAlexandria: T2 I put on a lot of weight when I was first ill & felt ashamed. It made me reluctant 2 seek help as it was blamed…
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
RT @Intakeme: T1. Shame can prevent people from getting the care they need & can prevent them from fully communicating their symptoms. #pat
Richard Kreis @kreisr1
RT @rheumpatient: @Intakeme @LifeAccrdingLiz There's been some interesting work on how #RA affects #men by @C_Flurey et al.…
Lucy Watts MBE MUniv FRSA @LucyAlexandria
RT @Clara_Health: A4: Every patient is a person first, and no two people are exactly alike! #patientchat
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
RT @IFFGD: A1 For many, the emotional impact of shame & stigma may reduce their quality of life even more than their symptoms. #patientchat
Richard Kreis @kreisr1
RT @MightyCasey: CT: Don't let anyone keep you from living your best life. Find your tribe, let them support/guide you to self-advocacy. #s
Vida @vida
A7 Destigmatize disease by giving facts, help and support. Never judge. #patientchat
Stroke Tattler @Stroketattler
@MaryOCMack Right, again simplifying complexity into individual responsibility-- blaming indiv. for poverty, illness etc. #patientchat
Xtel Bond 🇭🇹 Mahens Jr @Xtel007
RT @abrewi3010: T1 I don't think shame is exclusive to healthcare, I think shame is an untreated symptom of being a chronic patient in life…
Richard Kreis @kreisr1
RT @melissarvh: A7 I'm big on standing up against others' false perceptions, too. Must speak up & demand respect - combat unacceptable beha…
ElizabethKelly, Ph.D @Elizabe85727641
CT Importance of expressing self to discover/learn grow with others. Thanks to all for your experiences. #patientchat
Richard Kreis @kreisr1
RT @StellarStudy: CT: Put yourself in the patient's shoes and create a welcoming environment for them to share their concerns. #patientchat
Kimberly Amelia @fireflyrn84
Communities like these are not the constructors of shame. These are the constructors of courage, dignity, and humility #PatientChat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime.
Richard Kreis @kreisr1
RT @Intakeme: CT I ❤️ how all of you cross the labels and silos to join together for these important discussions about our shared experienc…
Richard Kreis @kreisr1
RT @RieOfLetters: The general media is a thorn in my side when it comes to communicating health. Oversimplified and splashy sells, un…
Richard Kreis @kreisr1
RT @Elizabe85727641: T7 Acknowledge multiple sides/causes to life events=wellness/disease, expected/unexpected events, “however, we shall o…
Helen Findlay @helenfindlay
RT @TheKyleMurray: @brkthrough_crew I think we can be more mindful that everyone is on their own journey and offer support in any way we ca…
Richard Kreis @kreisr1
RT @AnnePolta: Also applies to people's decisions/choices. Not everyone wants to be super-engaged. Not everyone wants hospice. #patientchat
Helen Findlay @helenfindlay