#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | 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 |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| 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 havenโt 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 Iโm Kara from @power4patients and Iโm excited to be moderating todayโs #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. Iโll share a couple โground rules" :) #patientchat |
 | Rie Lopez, MPH (she/her) @RieOfLetters RT @patientchat: If you havenโt already, check out @intakeme and their ePatient101 courses here: If you havenโt 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 havenโt already, check out @intakeme and their ePatient101 courses here: If you havenโt 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 Network @power4patients Hi everyone. It's Andrea from PEN. Happy to join you from Boulder, CO on this lovely Friday #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, didnโt miss much! Kim here! #patientchat |
| Stroke Tattler @Stroketattler @yourgpsdoc Hi Nicole! #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters Hi all! Rie here. โบ๏ธ 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 ๐ฆ @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 Brenรฉ 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 Network @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 |
| Lisa Davis Budzinski @lisadbudzinski @Intakeme @patientchat Really?!! Thatโs wonderful! ๐๐๐ #PatientChat |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: This topic was inspired by Brenรฉ 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 Iโm done here... #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 Network @power4patients RT @patientchat: T1: 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! ๐ #Patientchat |
| IFFGD @IFFGD A1 Shame and stigma are significant barriers to obtaining an accurate diagnosis & proper care for many pts. #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 |
| 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 |
 | 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 |
| burtrosen ๐ฆ @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 |
| 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 |
 | M&B Sciences @mbsciencesinc @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 (she/her) @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 #patientchat |
 | 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 |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz I'm Liz and represent quite a few rarely known and #rarediseases. #patientchat |
| M&B Sciences @mbsciencesinc @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 (she/her) @RieOfLetters @bbhomebody Absolutely true, Becky! Sometimes, I've been unable to bathe or feed myself without help. It is crushing! #patientchat |
| Lisa Davis Budzinski @lisadbudzinski This๐! 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 |
| ElizabethKelly, Ph.D @Elizabe85727641 T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patientchat |
| Alan Brewington @abrewi3010 RT @lisadbudzinski: This๐! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.co/QE5YSabvXN |
| Stroke Tattler @Stroketattler @bbhomebody @RieOfLetters T1 is that invisibility factor of shame part of the power differentials in healthcare? #patientchat |
| 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 Network @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 Network @power4patients RT @patientchat: T2: 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 |
| IFFGD @IFFGD RT @katie5280: @patientchat T1: @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 #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters T2: When I was getting a lot of "must be psychological" feedback, I stopped talking about my pain symptoms entirely. #shame #patientchat |
| M&B Sciences @mbsciencesinc @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 |
| Lisa Davis Budzinski @lisadbudzinski @GilmerHealthLaw We totally understand ๐ Itโs 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 |
| M&B Sciences @mbsciencesinc @patientchat We offer a lot of options for patients and loved ones to seek treatment anonymously, so no patient is left untreated. #patientchat |
| Kimberly Amelia @fireflyrn84 T2: Shame hasnโt 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 #HeathenSlut Casey๐บ๐ฆ๐ @MightyCasey [runs in late - writing on deadline!] HI!!! #patientchat |
| Patient Chat @patientchat T3: What are your experiences of disease and the issue of shame? #patientchat |
| Patient Empowerment Network @power4patients Let's not forget shame felt by #caregivers when they struggle with providing care & the burnout that often comes with it #patientchat |
| Kimberly Amelia @fireflyrn84 @LifeAccrdingLiz Hey Liz, long time no see! #patientchat |
| Alan Brewington @abrewi3010 T2 shame also has me play the "what if I would have done...". Robs me of living in moment. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What are your experiences of disease and the issue of shame? #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @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 (she/her) @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 |
| 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 left untreated. #patientchat |
| 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: 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 |
| M&B Sciences @mbsciencesinc @power4patients Great point. Caregivers are often under as much emotional strain as patients, and should be included in the conversation! #patientchat |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @MightyCasey A1: Fat-shaming is pernicious in healthcare. Evidence says obesity more genetic than "willpower" https://t.co/fsRLDDJfsV #patientchat |
| 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 (she/her) @RieOfLetters @Intakeme Yes! I get this! If I just try harder or was a tougher person, I would be fine. #patientchat |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @MightyCasey A2: Shame prevented me from getting timely treatment for HPV back in the mid-'70s. #patientchat |
 | mary @zebrafinch RT @patientchat: I will introduce new Topics with T1, T2...Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| mary @zebrafinch RT @patientchat: This topic was inspired by Brenรฉ Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat |
| mary @zebrafinch RT @patientchat: T1: 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 |
| mary @zebrafinch RT @patientchat: Topic 2 (T2:) coming up... https://t.co/40Js21RTUn #patientchat |
| mary @zebrafinch RT @patientchat: T2: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat |
| mary @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 |
| mary @zebrafinch RT @patientchat: T3: T3: What are your experiences of disease and the issue of shame? #patientchat |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @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 |
| M&B Sciences @mbsciencesinc A3: We see empowered patients talk about their disease publicly. We admire their strength in overcoming shame to help others. #patientchat |
| Rie Lopez, MPH (she/her) @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 #HeathenSlut Casey๐บ๐ฆ๐ @MightyCasey A2: Shame prevalent in chronic pain and mental health conditions. "Take your meds" and/or "No meds for you, drug seeker" smh #patientchat |
| M&B Sciences @mbsciencesinc @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 |
| Katie @katie5280 @patientchat T3: Breast cancer is considered a โwomenโs diseaseโ, 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 ๐ณ #patientchat https://t.co/nyyWJ5reNa |
| Patient Chat @patientchat T4: Why do you think some patients feel shame more than others? #patientchat |
| Patient Empowerment Network @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 Network @power4patients RT @patientchat: T4: 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: T4: Why do you think some patients feel shame more than others? #patientchat |
| Rie Lopez, MPH (she/her) @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 |
| Rie Lopez, MPH (she/her) @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 followed #patientchat |
| 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 Iโve had things. Like, โshouldnโt I know this by now?โ Answer: No, Iโm 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 "faking." #patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @MightyCasey Yes Shame of assumptions All issues blamed on obvious condition e.g., obesity, stroke, later life, frailty #patientchat |
| Richard Kreis @kreisr1 RT @RieOfLetters: @bbhomebody Absolutely true, Becky! Sometimes, I've been unable to bathe or feed myself without help. It is crushing! #patientchat |
| 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 |
| Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A1: A1: Unfortunately, I think shame and chronic illness are more prevalent in women. Especially #invisibleillness. #patientchat |
| Kimberly Amelia @fireflyrn84 The โwhat-ifโsโ get us every time! #Patientchat https://t.co/KEXU1AYpH7 |
| Richard Kreis @kreisr1 RT @MightyCasey: A1: A1: Fat-shaming is pernicious in healthcare. Evidence says obesity more genetic than "willpower" https://t.co/fsRLDDJfsV #patientchat |
| 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: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9 |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @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 @katie5280: @patientchat T2: @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 |
| 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/pmGymWlZGC |
| 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. #patientchat |
| Rie Lopez, MPH (she/her) @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 |
| 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 @patientchat: Hereโs some handy articles on participating in tweet chats: Hereโs some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #patientchat |
| Richard Kreis @kreisr1 RT @lisadbudzinski: @Intakeme @patientchat Really?!! Thatโs wonderful! ๐๐๐ #PatientChat |
| Richard Kreis @kreisr1 RT @RieOfLetters: Hi all! Rie here. โบ๏ธ Health educator, chronic migraineur and #ChronicPain patient. Looking forward to chatting with y'all! #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: @lisadbudzinski I have to go back to #HITsm and catch up when Iโm done here... #PatientChat |
| Richard Kreis @kreisr1 RT @Stroketattler: @Intakeme Hi Darla. It has been a while since I was on chats. #patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @bbhomebody @RieOfLetters T1 is that invisibility factor of shame part of the power differentials in healthcare? #patientchat |
| Stroke Tattler @Stroketattler @bbhomebody @Cpnervecenter Hi Becky! #patientchat |
| M&B Sciences @mbsciencesinc A4: Every patient is a person first, and no two people are exactly alike! #patientchat |
| Richard Kreis @kreisr1 RT @angelee828: T1: 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 |
| 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! ๐ #Patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @power4patients I think just the name "caregiver" is associated shame-- It "others" you -- not patient -- just an appendage #patientchat |
| Richard Kreis @kreisr1 RT @PatientCritical: Hello from Canada #patientchat -PJ Mierau here, Managing Director of the first ๐ฏ% member-patient owned advocacy/education co-op! |
| 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: 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 @Stroketattler: @power4patients @lil_lytnin T1 I don't think it is just the being around, but the "shared responsibility" --your fault too #patientchat |
| Richard Kreis @kreisr1 RT @katie5280: @patientchat T1: @patientchat T1: Shame can prevent people from receiving the help they need or even talking about it. #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: @angelee828 WI girls hitting a lot of chats lately! #PatientChat |
| Rie Lopez, MPH (she/her) @RieOfLetters @MightyCasey Ugh! I'm angry for you. Certainly no way to actually help someone. #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: The โwhat-ifโsโ 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 |
| 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, didnโt 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 Network @power4patients @Clara_Health Exactly! #patientchat |
| Richard Kreis @kreisr1 RT @Clara_Health: A4: A4: Every patient is a person first, and no two people are exactly alike! #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @Clara_Health: A4: 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 @IFFGD: IFFGD here to talk about shame & stigma in chronic digestive diseases & other chronic illnesses #patientchat |
| Richard Kreis @kreisr1 RT @PatientCritical: #healthcare advocacy gets heavy-but every day we see patients learn, share & speak out. Laugh & give yourself credit! #hitssm #patientchat https://t.co/mCTH67cnzi |
| 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 followed #patientchat |
| Richard Kreis @kreisr1 RT @katie5280: @patientchat Hi! I'm Katie, a 7 yr. breast cancer survivor & t2 diabetic. I have volunteer roles w/ @YSCBuzz @BeBrightPink & @LivingBeyondBC #patientchat |
| 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 providers. #patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @bbhomebody @Cpnervecenter Hi Becky! #patientchat |
| Alan Brewington @abrewi3010 RT @fireflyrn84: The โwhat-ifโsโ 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 visible at point of care! #patientchat |
| 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?#patientchat |
| Richard Kreis @kreisr1 RT @power4patients: Hi @Stroketattler We're Patient Empowerment Network (PEN) check us out :) https://t.co/uKLR16CptZ #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @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 @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 donโt 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: 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.co/aiiysf1fvU |
| 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://t.co/Oevo29qie5 |
| Your GPS Doc, LLC @yourgpsdoc T4: https://t.co/OcBNnZ17MK |
| Richard Kreis @kreisr1 RT @lisadbudzinski: Iโll 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 |
| Rie Lopez, MPH (she/her) @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. responsibility #patientchat |
| 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: @patientchat T3: Breast cancer is considered a โwomenโs diseaseโ, 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 to patient voices. #patientchat |
| Richard Kreis @kreisr1 RT @abrewi3010: Alan here. A very exhausted & burnt out #Caregiver & #chronicpain & #inflammatoryarthritis patient from #idaho here. #patientchat https://t.co/Lnr4wvTn6S |
| 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 included in the conversation! #patientchat |
| Richard Kreis @kreisr1 RT @MightyCasey: A2: A2: Shame prevalent in chronic pain and mental health conditions. "Take your meds" and/or "No meds for you, drug seeker" smh #patientchat |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @MightyCasey @RieOfLetters Oh, I can hold my own in any clinic setting =) #patientchat |
| 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 todayโs Empowered #patientchat w/ @intakeme here: You can find the topics we'll cover on todayโs 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 #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: The Empowered #patientchat is a project of @power4patients and @intakeme |
| Richard Kreis @kreisr1 RT @patientchat: Iโm Kara from @power4patients and Iโm excited to be moderating todayโs #patientchat |
| Patient Chat @patientchat T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat |
| Richard Kreis @kreisr1 RT @yourgpsdoc: T2: 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 |
| Richard Kreis @kreisr1 RT @HealthSparq: A really important #HITsm topic w/ @GilmerHealthLaw starts now: A really important #HITsm topic w/ @GilmerHealthLaw starts now: Patient Burnout. Come on over & join in #patientchat #WEGOHealthChat! |
| Richard Kreis @kreisr1 RT @angelee828: T2: I used 2 hesitate 2 call the longer Iโve had things. Like, โshouldnโt I know this by now?โ Answer: T2: I used 2 hesitate 2 call the longer Iโve had things. Like, โshouldnโt I know this by now?โ Answer: No, Iโm always learning! #patientchat |
| Richard Kreis @kreisr1 RT @MightyCasey: A2: 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 |
| Richard Kreis @kreisr1 RT @lisadbudzinski: @GilmerHealthLaw We totally understand ๐ Itโs tough to host & continue with more Rest your self #Patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat |
| 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 @patientchat: Time to start our topics. Here comes T1: 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 choose to be sick! #patientchat |
| 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 & history. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: If you havenโt already, check out @intakeme and their ePatient101 courses here: If you havenโt already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat |
| Lisa Davis Budzinski @lisadbudzinski This๐! 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 @patientchat: Excited to have to woman who started it all, Darla Brown from @intakeme, as our special guest and co-host today #patientchat |
| Richard Kreis @kreisr1 RT @burtrosen: T1: T1: shame hits family members Ive seen lots of families feel shame or be in denial about #lyme #autism and other chronic issues #PatientChat |
| Richard Kreis @kreisr1 RT @Clara_Health: @patientchat A1: @patientchat A1: So many illnesses are stigmatized in society, leaving patients at risk of avoiding seeking treatment out of shame. #patientchat #noshame |
| 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 #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 empowered patients. |
| Richard Kreis @kreisr1 RT @patientchat: Please continue intros and welcomes. Iโll share a couple โground rules" :) #patientchat |
| Richard Kreis @kreisr1 RT @RieOfLetters: T3: 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 @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 @patientchat: I will introduce new Topics with T1, T2...Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Your GPS Doc, LLC @yourgpsdoc The same is true for people of color. #patientchat https://t.co/b3ki3YSuQM |
| M&B Sciences @mbsciencesinc @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! #patientchat |
| Richard Kreis @kreisr1 RT @yourgpsdoc: T1: T1: Shame prohibits patients and doctors from engaging in meaningful conversations & often prevents patients from seeking care. #patientchat https://t.co/CcLhbJhQRx |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @MightyCasey A4: Every person has a different threshold for shame. Those from deeply religious backgrounds bear more burden, IMO. #patientchat |
| Patient Empowerment Network @power4patients @bbhomebody Well said! And I couldn't agree more #patientchat |
| Richard Kreis @kreisr1 RT @RieOfLetters: T2: T2: When I was getting a lot of "must be psychological" feedback, I stopped talking about my pain symptoms entirely. #shame #patientchat |
| 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 #patientchat |
| 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 left untreated. #patientchat |
| Richard Kreis @kreisr1 RT @angelee828: Angela from Wisconsin here. Looking forward to another interesting and informative #patientchat |
| 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 @IFFGD: A3 Accusations of "faking" or "drug-seeking" are very damaging for those suffering w/ a chronic and/or invisible illness. #patientchat |
| Richard Kreis @kreisr1 RT @MightyCasey: A2: 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/2OEvWlz2Lx |
| 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 |
| Richard Kreis @kreisr1 RT @power4patients: Hi everyone. It's Andrea from PEN. Happy to join you from Boulder, CO on this lovely Friday #patientchat |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @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 @Elizabe85727641: Greetings, Liz Kelly, joining late #patientchat |
| Richard Kreis @kreisr1 RT @PatientCritical: T1 shame is a dominant part of society: T1 shame is a dominant part of society: shame of social status, of mental/physical condition, of challenging authority #patientchat |
| Richard Kreis @kreisr1 RT @RieOfLetters: T1: 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 |
| Richard Kreis @kreisr1 RT @Clara_Health: A3: A3: We see empowered patients talk about their disease publicly. We admire their strength in overcoming shame to help others. #patientchat |
| 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 |
| 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 providers. #patientchat |
| 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/QqvQqDvzYR |
| Richard Kreis @kreisr1 RT @Elizabe85727641: T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patientchat |
| 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 it #patientchat |
| 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: T1: Numerous roles; to an extent shame and preconceived notions can go hand in hand some conditions. HCP perception and public #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: T1: T1: Can be big with family and friends also; mostly because of how they are perceived being around someone sick.. #patientchat |
| 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 on the topic |
| Richard Kreis @kreisr1 RT @Elizabe85727641: T2 Shame = not taking care of self/self-reporting was personal burden till someone listened to me & practiced Pt-centered HC #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 condition. #patientchat |
| Stroke Tattler @Stroketattler @Elizabe85727641 T4 Shame because you are different? -- Seligman's personal, permanent, and pervasive? #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/2FbAsGeAVE #patientchat |
| Richard Kreis @kreisr1 RT @lisadbudzinski: T3 Not being believed or compared to so&so who had the same but better now ๐ณ #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 #patientchat https://t.co/CuFgns3hdr |
| Richard Kreis @kreisr1 RT @fireflyrn84: T2: T2: Shame hasnโt prevented me from seeking treatment, but prevented me from being able to access svcs d/t how my spouse sees it #patientchat |
 | Vida Health @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 @lisadbudzinski: This๐! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.co/QE5YSabvXN |
| Richard Kreis @kreisr1 RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| 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 followed #patientchat |
 | Eat - Sleep - Yoga @_iheartyoga I Love Yoga Pants Grab it=> https://t.co/AUbLM8cnZQ #iloveyogar #yogaclothing #yogahoodies #yogaleggings #patientchat https://t.co/GHx28GermJ |
| Richard Kreis @kreisr1 RT @patientchat: T2: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat |
| Rie Lopez, MPH (she/her) @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. #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: T3: 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: T1: T1: What role does shame play in healthcare for patients? #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T3: T3: What are your experiences of disease and the issue of shame? #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 |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @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 |
| Lisa Davis Budzinski @lisadbudzinski @power4patients And thatโs a huge part of being a caretaker/caregiver or Ptis the depression & anxiety that HCPs arenโt 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 |
| Vida Health @vida A4 Some may feel more shame than others due to past experiences or trauma. #patientchat |
| Richard Kreis @kreisr1 RT @power4patients: @Clara_Health Exactly! #patientchat |
| M&B Sciences @mbsciencesinc @Elizabe85727641 How do we give patients the power? We try to provide education and resources to help. What do you suggest? #patientchat #patientshavepower |
| 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 @fireflyrn84: I think women are seen as more concerned/anxious and donโt necessary get the correct care. Also symptoms differ men vs women #patientchat https://t.co/0fYIFadf3O |
| Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A3: A3: That I was "exaggerating"... I sometimes use my Phone to document orthostatic BPs if they are normal in docs office #POTS #patientchat |
| 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. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Topic 5 (T5:) coming up... https://t.co/40Js21RTUn #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T5: 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. #patientchat |
| Richard Kreis @kreisr1 RT @lisadbudzinski: This๐! The few ruin it for the many. Comparing is very judgmental #patientchat https://t.co/qVjA9tmisL |
| Vida Health @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: 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 |
| 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 |
| 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. #patientchat |
| 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: 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 @fireflyrn84: A.M.E.N. #PatientChat https://t.co/CYuqMQS7pz |
| Stroke Tattler @Stroketattler @fireflyrn84 T5 Do you think that "talking with others #patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @Elizabe85727641 T4 Shame because you are different? -- Seligman's personal, permanent, and pervasive? #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T5 Persistence to increase knowledge, practice reflection/ outreach to others, listen to other stories to find common themes. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters @melissarvh I'm much better at doing this for others than myself. Alas, I am still a work in progress! #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 |
| Richard Kreis @kreisr1 RT @RieOfLetters: T4: 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 @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 @lisadbudzinski: @power4patients And thatโs a huge part of being a caretaker/caregiver or Ptis the depression & anxiety that HCPs arenโt aware of #PatientChat |
| 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. #patientchat |
| 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 participating, pushing back on paternalism. #patientchat |
| 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 suggest? #patientchat #patientshavepower |
| 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 safety #patientchat |
| 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 #patientchat |
| 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: 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 @vida: A5 Our #vidacoaches are trained to show empathy and kindness. #patientchat |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @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: 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 |
| Richard Kreis @kreisr1 RT @angelee828: @brkthrough_crew Definitely! I have found talking to other patients has helped immensely and finding providers I can communicate with honestly. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @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 |
| Patient Chat @patientchat T6: How might we support more patients in overcoming shame around their health? #patientchat |
| Richard Kreis @kreisr1 RT @Elizabe85727641: T5 Persistence to increase knowledge, practice reflection/ outreach to others, listen to other stories to find common themes. #patientchat |
| 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 Health @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 @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. #patientchat |
| Melissa VanHouten @melissarvh @RieOfLetters I think we are all works in progress. :) You are fabulous! #patientchat |
| M&B Sciences @mbsciencesinc 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 Donโt 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: General comment: here's how far I've moved from shame - an open-kimono #epatient #woke story: https://t.co/RTWpRD6J6J #patientchat |
| Vida Health @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 |
| Lisa Davis Budzinski @lisadbudzinski RT @vida: A5 Our #vidacoaches are trained to show empathy and kindness. #patientchat |
| Melissa VanHouten @melissarvh RT @Clara_Health: A5: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empowered. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T6: T6: How might we support more patients in overcoming shame around their health? #patientchat |
| Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A4: A4: Unfortunately, young women are too often given the label of "too stressed" and written off as a result. #invisibleillness #patientchat |
| 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. #patientchat |
| 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: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empowered. #patientchat |
| Richard Kreis @kreisr1 RT @melissarvh: @RieOfLetters I think we are all works in progress. :) You are fabulous! #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters @melissarvh Thank you for saying that. I appreciate it! #patientchat https://t.co/tS7QoM1EmP |
| Lisa Davis Budzinski @lisadbudzinski T5 Itโs important to let others know youโve been there, you know what itโs like & help to show how to deal with it #PatientChat https://t.co/Nr5Ck28eq4 |
| Richard Kreis @kreisr1 RT @fireflyrn84: Donโt 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 |
| 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 |
| M&B Sciences @mbsciencesinc When the patients answer #industry #Doctors #researchers #caregivers and the world should listen! Really #listen. #patientchat https://t.co/raxEG168bR |
| Patient Empowerment Network @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 navigator? #patientchat |
| 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 |
| 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 โsuck it up & deal with itโ #patientchat Generational thoughts are interesting #PatientChat |
| Patient Empowerment Network @power4patients RT @MaryOCMack: T6: T6: by saying your chronic condition could just as easily be mine. It's not your fault #patientchat |
| Richard Kreis @kreisr1 RT @lisadbudzinski: T5 Itโs important to let others know youโve been there, you know what itโs like & help to show how to deal with it #PatientChat https://t.co/Nr5Ck28eq4 |
| Vida Health @vida RT @Clara_Health: A5: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empowered. #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 #patientchat |
| IFFGD @IFFGD RT @Elizabe85727641: T6 Create Open, welcoming environment that offers listening, reflection, connection & follow-up. #patientchat |
| Richard Kreis @kreisr1 RT @Clara_Health: When the patients answer #industry #Doctors #researchers #caregivers and the world should listen! Really #listen. #patientchat https://t.co/raxEG168bR |
| Richard Kreis @kreisr1 RT @abrewi3010: T6 by working together. Let's form a #arthritis #crohns #cancer #narcolepsy #diabetes antishame CoOp for example. #patientchat |
| 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 harder" #patientchat |
| burtrosen ๐ฆ @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 lifting #patientchat |
| M&B Sciences @mbsciencesinc 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 #HeathenSlut Casey๐บ๐ฆ๐ @MightyCasey A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #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: In case you missed today's #HITsm chat on Patient Burnout hosted by @GilmerHealthLaw Transcript is: https://t.co/26UaoQZgrj #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: 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 isnโt 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 #patientchat |
| Patient Chat @patientchat Topic 7 (T7:) coming up... https://t.co/40Js21RTUn #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 โsuck it up & deal with itโ #patientchat Generational thoughts are interesting #PatientChat |
| 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 pass #patientchat |
| Rie Lopez, MPH (she/her) @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: 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 @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: 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 @yourgpsdoc: T6: T6: By showing empathy and compassion and through chats like this! #patientchat https://t.co/s9XAboYA2A |
| Richard Kreis @kreisr1 RT @MightyCasey: A6: A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat |
| Richard Kreis @kreisr1 RT @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 @fireflyrn84: @Stroketattler I agree, reframing is what should be done. Shame isnโt 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: |
| Vida Health @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 @RieOfLetters: T6: 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 @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: A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat |
| Vida Health @vida RT @RieOfLetters: #caregivers need a lot more support! We are not angels, we're humans. #patientchat https://t.co/UkafMTfg4F |
| Richard Kreis @kreisr1 RT @patientchat: T7: 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 |
| Patient Empowerment Network @power4patients RT @MightyCasey: A6: 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 |
| Vida Health @vida RT @yourgpsdoc: T5: 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 |
| 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 (she/her) @RieOfLetters @rheumpatient For me, a diagnosis meant everything. I had a name for my strange and terrifying symptoms. I SO get this! #patientchat |
| 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" #patientchat |
| Patient Empowerment Network @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. #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: Exactly, patients holding anything back can have negative impact on care. Need all details for comprehensive care #Patientchat https://t.co/K13mRToueb |
| 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 |
| M&B Sciences @mbsciencesinc @abrewi3010 Bringing the #humanity back to healthcare will fix a lot of the current problems. #patientchat |
| Richard Kreis @kreisr1 RT @lisadbudzinski: @Stroketattler @TheKyleMurray Yes because everyone becomes a Pt. Just a matter of time #PatientChat |
| Alan Brewington @abrewi3010 T7 Quit putting positive &/or negative labels on moments. They are chapters in a continuous story that isn't done #Patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @Clara_Health: A5: 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 |
| Patient Empowerment Network @power4patients @MightyCasey Sunlight. I couldn't agree more #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @Clara_Health: A5: 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 |
| Lisa Davis Budzinski @lisadbudzinski @burtrosen You too Burt! โจ #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 (she/her) @RieOfLetters I LOVE THIS! #patientchat https://t.co/eRn8PasEdQ |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #patientchat |
| M&B Sciences @mbsciencesinc @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 @Clara_Health: @abrewi3010 Bringing the #humanity back to healthcare will fix a lot of the current problems. #patientchat |
| Richard Kreis @kreisr1 RT @rheumpatient: |
| 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 #Patientchat |
| 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 |
| 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 judgment. #patientchat |
| 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 #Patientchat |
| M&B Sciences @mbsciencesinc A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatment. #patientchat |
| 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/g5hzrzvKoO #patientchat |
| Richard Kreis @kreisr1 RT @LucyAlexandria: |
| Richard Kreis @kreisr1 RT @lisadbudzinski: @burtrosen You too Burt! โจ #patientchat |
| Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A6: A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #patientchat |
| Richard Kreis @kreisr1 RT @RieOfLetters: I LOVE THIS! #patientchat https://t.co/eRn8PasEdQ |
| 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 @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? |
| Stroke Tattler @Stroketattler @LifeAccrdingLiz YES! The stigma and shame created by Individual responsibility for illness! #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. #patientchat #btsm https://t.co/XoPdKEjqo2 |
| Richard Kreis @kreisr1 RT @yourgpsdoc: T7: 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 |
| 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 judgment. #patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @LifeAccrdingLiz #patientchat |
| IFFGD @IFFGD A7 Patients need to be recognized as key stakeholders & be empowered to make their health needs known 4 themselves & community. #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 |
 | ๐โฝ๐ญ๐นโ Xtel Bond @Xtel007 RT @patientchat: T1: T1: What role does shame play in healthcare for patients? #patientchat |
| Anne Polta @AnnePolta General media messages too. There's a lot of oversimplifying and "shoulds" and "shouldn'ts." #patientchat https://t.co/4JTParsRA2 |
| ๐โฝ๐ญ๐นโ Xtel Bond @Xtel007 RT @patientchat: This topic was inspired by Brenรฉ Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat |
| Richard Kreis @kreisr1 RT @LucyAlexandria: |
| Patient Empowerment Network @power4patients RT @IFFGD: A7 Patients need to be recognized as key stakeholders & be empowered to make their health needs known 4 themselves & community. #patientchat |
| Richard Kreis @kreisr1 RT @Clara_Health: A7: A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatment. #patientchat |
| ๐โฝ๐ญ๐นโ Xtel Bond @Xtel007 RT @patientchat: T2: 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 |
| Rie Lopez, MPH (she/her) @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: A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #patientchat |
| 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 together #Patientchat https://t.co/O1GOiCNeWe |
| 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 encountered illness understand. #patientchat https://t.co/IFWWIdYt4y -Thoughts? |
| 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 |
| Stroke Tattler @Stroketattler @AnnePolta YES simplifying the complex--The "that's good" "That's Bad" "Sad" #patientchat |
| Alan Brewington @abrewi3010 RT @Clara_Health: @abrewi3010 Bringing the #humanity back to healthcare will fix a lot of the current problems. #patientchat |
| Mighty #HeathenSlut Casey๐บ๐ฆ๐ @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: A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatment. #patientchat |
| Melissa VanHouten @melissarvh A7 I'm big on standing up against others' false perceptions, too. Must speak up & demand respect - combat unacceptable behavior #patientchat |
| 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 |
| Melissa VanHouten @melissarvh RT @StellarStudy: CT: CT: Put yourself in the patient's shoes and create a welcoming environment for them to share their concerns. #patientchat #btsm #cancer |
| Melissa VanHouten @melissarvh RT @MightyCasey: CT: 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 |
| Rie Lopez, MPH (she/her) @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, โhowever, we shall overcome.โ #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 long ways #patientchat https://t.co/ctRyRwYitO |
| Melissa VanHouten @melissarvh RT @Elizabe85727641: T7 Acknowledge multiple sides/causes to life events=wellness/disease, expected/unexpected events, โhowever, we shall overcome.โ #patientchat |
| 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 |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A6: Ask follow-up questions about our concern. Moving on to another system doesn't help anyone. #patientchat #RareDisease #invisibleillness |
| Richard Kreis @kreisr1 Interested in telling their story for my new book, โYour Caregiving or Disability Storyโ or โYour Not Alone.โ Let me know #patientchat |
| Patient Empowerment Network @power4patients RT @MightyCasey: CT: 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 |
| Richard Kreis @kreisr1 RT @MaryOCMack: T7: T7: blaming and judging are a huge part of stigmatizing those with ill health. #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: #patientchat |
| ๐โฝ๐ญ๐นโ Xtel Bond @Xtel007 Hi, Christele here. I'm so sad I'm late and missing all this. #patientchat |
| 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 norm. #patientchat |
| Stroke Tattler @Stroketattler @Elizabe85727641 Stop simplifying complexity-- it is all individual responsibility #patientchat |
| 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 |
| M&B Sciences @mbsciencesinc CT: Patients & caregivers face huge emotional burdens. We work hard to make things easier- we encourage others to do the same! #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: T7: T7: Work toward making it easier to have open conversations like this to discuss how we feel. The power of community is huge #patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @AnnePolta YES simplifying the complex--The "that's good" "That's Bad" "Sad" #patientchat |
| ๐โฝ๐ญ๐นโ Xtel Bond @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: |
| Richard Kreis @kreisr1 RT @rheumpatient: |
| ๐โฝ๐ญ๐นโ Xtel Bond @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: 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 |
| Vida Health @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 |
| ๐โฝ๐ญ๐นโ Xtel Bond @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. #patientchat |
| Richard Kreis @kreisr1 RT @melissarvh: A7 I'm big on standing up against others' false perceptions, too. Must speak up & demand respect - combat unacceptable behavior #patientchat |
| 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: CT: Put yourself in the patient's shoes and create a welcoming environment for them to share their concerns. #patientchat #btsm #cancer |
| 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 @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 |
| Richard Kreis @kreisr1 RT @Elizabe85727641: T7 Acknowledge multiple sides/causes to life events=wellness/disease, expected/unexpected events, โhowever, we shall overcome.โ #patientchat |
| Richard Kreis @kreisr1 RT @AnnePolta: Also applies to people's decisions/choices. Not everyone wants to be super-engaged. Not everyone wants hospice. #patientchat |
| Richard Kreis @kreisr1 RT @LucyAlexandria: |
| Richard Kreis @kreisr1 RT @Stroketattler: @fireflyrn84 Community-- is the social constructor of shame, stigma and the reduction of shame & stigma of illness/disability #patientchat |
| Patient Chat @patientchat A big thank you to Darla @intakeme for sharing your insights & helping us co-host today #patientchat |
| Lisa Davis Budzinski @lisadbudzinski CT Fight for your QOL. We deserve to have better outcomes when fighting every day of our lives against disease #patientchat |
| STELLAR Study @StellarStudy RT @vida: A7 Destigmatize disease by giving facts, help and support. Never judge. #patientchat |
| Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A6: A6: Ask follow-up questions about our concern. Moving on to another system doesn't help anyone. #patientchat #RareDisease #invisibleillness |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. #patientchat |
| Richard Kreis @kreisr1 RT @rheumpatient: |
| Richard Kreis @kreisr1 RT @Xtel007: Hi, Christele here. I'm so sad I'm late and missing all this. #patientchat |
| Melissa VanHouten @melissarvh Thank you so much for hosting another engaging & informative chat! #patientchat |
| Richard Kreis @kreisr1 RT @Stroketattler: @Elizabe85727641 Stop simplifying complexity-- it is all individual responsibility #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters CT: Patient communities are strong and supportive, an endless source of compassion and hope for each other. #stronger #patientchat |
| Stroke Tattler @Stroketattler @fireflyrn84 EXACTLY-- This community is a constructors of courage, dignity, and humility. My point shame socially constructed #patientchat |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, November 17th at 1pm ET https://t.co/KbQGqtv5D1 |
| ๐โฝ๐ญ๐นโ Xtel Bond @Xtel007 RT @lisadbudzinski: This๐! Not being believed & shamed by work, family & friends. It can be so draining on the QOL #PatientChat https://t.co/QE5YSabvXN |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with the hashtag #patientchat |
| Melissa VanHouten @melissarvh RT @RieOfLetters: CT: CT: Patient communities are strong and supportive, an endless source of compassion and hope for each other. #stronger #patientchat |
| Vida Health @vida Thanks @patientchat These are always great chats. I (@askdrho) love bringing these types of #patientchat conversations to the forefront. |
| Patient Empowerment Network @power4patients RT @patientchat: The next Empowered #patientchat will be Friday, November 17th at 1pm ET https://t.co/KbQGqtv5D1 |
| Lisa Davis Budzinski @lisadbudzinski RT @patientchat: The next Empowered #patientchat will be Friday, November 17th at 1pm ET https://t.co/KbQGqtv5D1 |
| Stroke Tattler @Stroketattler Thanks to the organizers for the chat. Also to Brene Brown for inspiring it. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @patientchat This was great! Thanks for hosting. #patientchat |
| Anne Polta @AnnePolta CT Naming it and getting it out into the open is a powerful antidote. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: The next Empowered #patientchat will be Friday, November 17th at 1pm ET https://t.co/KbQGqtv5D1 |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A7: It'll be a process. However, I think @TheMightySite could partner with say, @Medscape to put faces to #invisibleillness #patientchat |
| Stroke Tattler @Stroketattler RT @power4patients: Hi @Stroketattler We're Patient Empowerment Network (PEN) check us out :) https://t.co/uKLR16CptZ #patientchat |
| Alan Brewington @abrewi3010 @Intakeme #patientchat https://t.co/E7HyIh4Ft0 |
| Patient Critical Co-op @PatientCritical RT @patientchat: T5: T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat |
| Stroke Tattler @Stroketattler Thanks! https://t.co/qG9bD5DtYA |
| Lisa Davis Budzinski @lisadbudzinski Everyone have a great weekend no matter where you are โจ Thank you for all the great insight #patientchat |
| ๐โฝ๐ญ๐นโ Xtel Bond @Xtel007 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 "faking." #patientchat |
| Anne Polta @AnnePolta @patientchat @Intakeme Great chat! Many thanks. #patientchat |
| Patient Critical Co-op @PatientCritical T5 I co-founded https://t.co/HP5Vm5xQby a 100% patient-owned advocacy & education #healthcare co-op to help pts learn & share #patientchat https://t.co/SCh1YBO4H7 |
| Rie Lopez, MPH (she/her) @RieOfLetters @Intakeme I think that we could definitely create some media guidelines. I would love to help with something like that! DM any time! โบ๏ธ #patientchat |
| Alan Brewington @abrewi3010 @rheumpatient It's frustrating for sure. Especially on days when we just need to get away but the body has other ideas. #patientchat |
| Angela Cohen @angelee828 @patientchat @Intakeme Thanks for the fantastic chat!! I had to step away but Iโm going to go catch up right now!! ๐ #patientchat |
| Kimberly Amelia @fireflyrn84 CT: We each should be allowed to express our concern and feeling without being judged for it. Our disease are enough to handle #patientchat |
| Alan Brewington @abrewi3010 @rheumpatient I have found that it's an excellent time to try and develop new problem solving skills. Try to see the issue with new eyes. #patientchat |
| ๐โฝ๐ญ๐นโ Xtel Bond @Xtel007 RT @angelee828: @brkthrough_crew Definitely! I have found talking to other patients has helped immensely and finding providers I can communicate with honestly. #patientchat |
| Kimberly Amelia @fireflyrn84 Thanks for a great chat!! #patientchat |
| Kimberly Amelia @fireflyrn84 @RieOfLetters @Intakeme Ooh, me too!!! #Patientchat |
| Patient Empowerment Network @power4patients @fireflyrn84 @RieOfLetters @Intakeme What a great idea! We would love to help as well ๐ #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz CT: Patients can teach you everything, just have to ask the right questions. Can't do this without listening. Invisible CMEs #patientchat |
 | Ben Hughes @benbo2013 RT @Clara_Health: A4: A4: Every patient is a person first, and no two people are exactly alike! #patientchat |
#patientchat content from Twitter.