#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
Profile | Tweet |
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![]() | 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 haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat |
![]() | IFFGD @IFFGD IFFGD here to talk about shame & stigma in chronic digestive diseases & other chronic illnesses #patientchat |
![]() | Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat |
![]() | Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters RT @patientchat: If you haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat |
![]() | Your GPS Doc, LLC @yourgpsdoc I'm Nicole Rochester, a physician and patient/health advocate, former caregiver, and founder of @yourgpsdoc #patientchat |
![]() | Your GPS Doc, LLC @yourgpsdoc RT @patientchat: If you haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #patientchat |
![]() | Patient Chat @patientchat Today's chat is solely informational & not a substitute for speaking w/a doctor who's familiar w/your medical needs & history. #patientchat |
![]() | Patient Empowerment Network @power4patients Hi everyone. It's Andrea from PEN. Happy to join you from Boulder, CO on this lovely Friday #patientchat |
![]() | Alan Brewington @abrewi3010 Alan here. A very exhausted & burnt out #Caregiver & #chronicpain & #inflammatoryarthritis patient from #idaho here. #patientchat https://t.co/Lnr4wvTn6S |
@ Yay, didn’t miss much! Kim here! #patientchat | |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters Hi all! Rie here. ☺️ Health educator, chronic migraineur and #ChronicPain patient. Looking forward to chatting with y'all! #patientchat |
![]() | Patient Chat @patientchat Today's #patientchat topic is Chronic Disease and Shame https://t.co/40Js21RTUn |
@burtrosen hi everyone! burt here for today's #PatientChat, one of my favorite chats of the week! | |
![]() | Patient Chat @patientchat This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat |
![]() | Katie @katie5280 @patientchat Hi! I'm Katie, a 7 yr. breast cancer survivor & t2 diabetic. I have volunteer roles w/ @YSCBuzz @BeBrightPink & @LivingBeyondBC #patientchat |
![]() | Patient Empowerment Network @power4patients Hi [REDACTED USER] 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 |
![]() | Your GPS Doc, LLC @yourgpsdoc RT @patientchat: This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat |
@ [REDACTED USER] I have to go back to #HITsm and catch up when I’m 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: What role does shame play in healthcare for patients? #patientchat |
@ @bbhomebody I happened to get off the phone with the doc just in time #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 |
@ @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! |
@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 |
![]() | 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 |
@ T1: Numerous roles; to an extent shame and preconceived notions can go hand in hand some conditions. HCP perception and public #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 #LongCOVID #RareDisease @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 |
@ 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 |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patientchat |
@ 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: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat |
![]() | IFFGD @IFFGD RT @katie5280: @patientchat T1: Shame can prevent people from receiving the help they need or even talking about it. #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 [REDACTED USER] It's important for ALL to step back and recognize the diagnosis is no ones fault. Patients don't choose to be sick! #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 |
@ T2: Shame hasn’t prevented me from seeking treatment, but prevented me from being able to access svcs d/t how my spouse sees it #patientchat | |
![]() | Katie @katie5280 @patientchat T2: For me, no. I get that most providers have seen/heard it all, so if something is wrong, I get it checked! #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
![]() | Alan Brewington @abrewi3010 T2 shame also has me play the "what if I would have done...". Robs me of living in moment. #patientchat |
@ @LifeAccrdingLiz Hey Liz, long time no see! #patientchat | |
![]() | Patient Empowerment Network @power4patients RT @patientchat: T3: What are your experiences of disease and the issue of shame? #patientchat |
![]() | Liz Kennerley #LongCOVID #RareDisease @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 |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters [REDACTED USER] @bbhomebody I think it certainly plays a role, [REDACTED USER], especially when symptoms aren't visible at point of care! #patientchat |
![]() | Alan Brewington @abrewi3010 RT @yourgpsdoc: T2: This is a huge problem and very common. Providers must be more sensitive and stigma needs to be removed.… |
![]() | 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 Casey🇺🇦🌟 @MightyCasey A1: Fat-shaming is pernicious in healthcare. Evidence says obesity more genetic than "willpower" https://t.co/fsRLDDJfsV #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 Casey🇺🇦🌟 @MightyCasey A2: Shame prevented me from getting timely treatment for HPV back in the mid-'70s. #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 |
![]() | 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 |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @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 |
![]() | 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 |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @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 “women’s disease”, so there can be shame when a man is diagnosed. #patientchat |
![]() | 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: Why do you think some patients feel shame more than others? #patientchat |
@ T3: Weight is a huge source of shame. Various meds by themselves cause issues. Pathophysiology is huge w/disease. Many unaware #patientchat | |
![]() | Richard Kreis @kreisr1 RT @patientchat: T4: Why do you think some patients feel shame more than others? #patientchat |
![]() | Rie Lopez, MPH (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 f… |
![]() | Alan Brewington @abrewi3010 T3 having to take a drug test, and pay for it myself, before my #PainManagement doc would see me. #opioidawareness #patientchat |
![]() | Angela Cohen @angelee828 T2: I used 2 hesitate 2 call the longer I’ve had things. Like, “shouldn’t I know this by now?” Answer: No, I’m always learning! #patientchat |
![]() | Richard Kreis @kreisr1 RT @yourgpsdoc: I'm Nicole Rochester, a physician and patient/health advocate, former caregiver, and founder of @yourgpsdoc #patientchat |
![]() | Richard Kreis @kreisr1 RT @melissarvh: T3 I've never been ashamed of my illness but many in groups fear seeking care b/c they might be seen as "at fault" or "faki… |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: @bbhomebody Absolutely true, Becky! Sometimes, I've been unable to bathe or feed myself without help. It is crushing! #pa… |
![]() | Richard Kreis @kreisr1 RT @abrewi3010: T2 shame also has me play the "what if I would have done...". Robs me of living in moment. #patientchat |
![]() | Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A1: Unfortunately, I think shame and chronic illness are more prevalent in women. Especially #invisibleillness. #patie… |
@ The “what-if’s” get us every time! #Patientchat https://t.co/KEXU1AYpH7 | |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: A1: Fat-shaming is pernicious in healthcare. Evidence says obesity more genetic than "willpower" https://t.co/fsRLDDJfsV #… |
![]() | Richard Kreis @kreisr1 RT @patientchat: Topic 3 (T3:) coming up... https://t.co/40Js21RTUn #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9 |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @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: For me, no. I get that most providers have seen/heard it all, so if something is wrong, I get it checked! #… |
![]() | Richard Kreis @kreisr1 RT @IFFGD: Join @patientchat for a #patientchat about "Chronic Disease and Shame" in 15 minutes https://t.co/pc2tPpZBq9 https://t.co/pmGymW… |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: @TheKyleMurray So sorry you had to go through that. No one should fight a diagnosis alone. Let us know if we can help. #p… |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters #caregivers need a lot more support! We are not angels, we're humans. #patientchat https://t.co/UkafMTfg4F |
![]() | Alan Brewington @abrewi3010 T4 shame is like a human, no 2 are alike. #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: Here’s some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #pat… |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: Hi all! Rie here. ☺️ Health educator, chronic migraineur and #ChronicPain patient. Looking forward to chatting with y'all… |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: [REDACTED USER] I have to go back to #HITsm and catch up when I’m done here... #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: Can be isolating whether put it on myself or something said by HCP/others. Affects self image & makes it harder 2 open… |
![]() | Richard Kreis @kreisr1 RT @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 @abrewi3010: T4 shame is like a human, no 2 are alike. #patientchat |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: #caregivers need a lot more support! We are not angels, we're humans. #patientchat https://t.co/UkafMTfg4F |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: A3: I've been fat-shamed (and I'm not really that "big") repeatedly by PCPs since menopause. Trackers + food logs = no cha… |
![]() | Richard Kreis @kreisr1 RT @katie5280: @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 “what-if’s” get us every time! #Patientchat https://t.co/KEXU1AYpH7 |
![]() | Melissa VanHouten @melissarvh A4 I think some patients have been hurt by unkind family members & friends & treated with a lack of empathy by some providers. #patientchat |
![]() | Richard Kreis @kreisr1 RT @StellarStudy: @StellarStudy is joining today's #patientchat! |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: @LifeAccrdingLiz Hey Liz, long time no see! #patientchat |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: Yay, didn’t miss much! Kim here! #patientchat |
![]() | Richard Kreis @kreisr1 RT @burtrosen: hi everyone! burt here for today's #PatientChat, one of my favorite chats of the week! |
![]() | Patient Empowerment Network @power4patients @Clara_Health Exactly! #patientchat |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: A4: Every patient is a person first, and no two people are exactly alike! #patientchat |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters RT @Clara_Health: A4: Every patient is a person first, and no two people are exactly alike! #patientchat |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: @MightyCasey Ugh! I'm angry for you. Certainly no way to actually help someone. #patientchat |
![]() | Richard Kreis @kreisr1 RT @IFFGD: IFFGD here to talk about shame & stigma in chronic digestive diseases & other chronic illnesses #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… |
![]() | Richard Kreis @kreisr1 RT @melissarvh: A4 I think some patients have been hurt by unkind family members & friends & treated with a lack of empathy by some provide… |
![]() | Alan Brewington @abrewi3010 RT @fireflyrn84: The “what-if’s” get us every time! #Patientchat https://t.co/KEXU1AYpH7 |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: [REDACTED USER] @bbhomebody I think it certainly plays a role, [REDACTED USER], especially when symptoms aren't visib… |
![]() | 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… |
![]() | Liz Kennerley #LongCOVID #RareDisease @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 |
@ I think women are seen as more concerned/anxious and don’t necessary get the correct care. Also symptoms differ men vs women #patientchat https://t.co/0fYIFadf3O | |
![]() | Richard Kreis @kreisr1 RT @techguy: It's a nice juicy topic for this week's #HITsm chat hosted by @GilmerHealthLaw Details: https://t.co/OFpTeygHCa #PatientChat |
![]() | 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://… |
![]() | 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 @fireflyrn84: @bbhomebody I happened to get off the phone with the doc just in time #patientchat |
![]() | Richard Kreis @kreisr1 RT @katie5280: @patientchat T3: Breast cancer is considered a “women’s disease”, so there can be shame when a man is diagnosed. #patientchat |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: @RieOfLetters True- but at no fault of the patient. Industry and care provides need to be encouraging and #listen t… |
![]() | Richard Kreis @kreisr1 RT @abrewi3010: Alan here. A very exhausted & burnt out #Caregiver & #chronicpain & #inflammatoryarthritis patient from #idaho here… |
![]() | Your GPS Doc, LLC @yourgpsdoc T4: I think it depends on the disease and how it is perceived by health care providers and society at large. #patientchat https://t.co/OcBNnZ17MK |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: @power4patients Great point. Caregivers are often under as much emotional strain as patients, and should be include… |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @RieOfLetters Oh, I can hold my own in any clinic setting =) #patientchat |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: A2: Shame prevalent in chronic pain and mental health conditions. "Take your meds" and/or "No meds for you, drug seeker" s… |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T3 Shame & guilt seem to pervade societies, especially for women who lack physical/$$/Cultural Power or precedent. #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat w/ @intakeme here: https://t.co/40Js21RTUn |
![]() | Richard Kreis @kreisr1 RT @patientchat: Topic 2 (T2:) coming up... https://t.co/40Js21RTUn #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: Today's #patientchat topic is Chronic Disease and Shame https://t.co/40Js21RTUn |
![]() | Richard Kreis @kreisr1 RT @patientchat: The Empowered #patientchat is a project of @power4patients and @intakeme |
![]() | Patient Chat @patientchat T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat |
![]() | Richard Kreis @kreisr1 RT @yourgpsdoc: T2: This is a huge problem and very common. Providers must be more sensitive and stigma needs to be removed.… |
![]() | Richard Kreis @kreisr1 RT @HealthSparq: A really important #HITsm topic w/ @GilmerHealthLaw starts now: Patient Burnout. Come on over & join in #patientchat #WEGO… |
![]() | Richard Kreis @kreisr1 RT @angelee828: T2: I used 2 hesitate 2 call the longer I’ve had things. Like, “shouldn’t I know this by now?” Answer: No, I’m always learn… |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: A2: I was told to lose weight by a neurologist when I saw him for a repetitive wrist injury issue. No fix for wrist, tho.… |
![]() | Patient Empowerment Network @power4patients RT @patientchat: 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: #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: If you haven’t already, check out @intakeme and their ePatient101 courses here: https://t.co/iA2VV6O49J #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 #patientch… |
![]() | Richard Kreis @kreisr1 RT @patientchat: Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to emp… |
![]() | Richard Kreis @kreisr1 RT @patientchat: Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: T3: I was experiencing my first hemiplegic migraine and the EMTs were discussing my possible drug use in front of me. #sh… |
![]() | Richard Kreis @kreisr1 RT @IFFGD: A3 We have found that shame is a significant barrier to care & emotional burden for those w/ fecal #incontinence. #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: I will introduce new Topics with T1, T2...Please include corresponding T# at front of answer - hard to remember but helpfu… |
![]() | Your GPS Doc, LLC @yourgpsdoc The same is true for people of color. #patientchat https://t.co/b3ki3YSuQM |
![]() | 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!… |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: Every person has a different threshold for shame. Those from deeply religious backgrounds bear more burden, IMO. #patientchat |
![]() | Richard Kreis @kreisr1 RT @yourgpsdoc: T1: Shame prohibits patients and doctors from engaging in meaningful conversations & often prevents patients from s… |
![]() | Patient Empowerment Network @power4patients @bbhomebody Well said! And I couldn't agree more #patientchat |
@ 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 @Clara_Health: @patientchat We offer a lot of options for patients and loved ones to seek treatment anonymously, so no patient is… |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T4 Pt feel shame because lack power, support, knowledge and do not meet traditional role expectations #patientchat |
![]() | Richard Kreis @kreisr1 RT @IFFGD: A3 Accusations of "faking" or "drug-seeking" are very damaging for those suffering w/ a chronic and/or invisible illness. #patie… |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: A2: Shame prevented me from getting timely treatment for HPV back in the mid-'70s. #patientchat |
![]() | Richard Kreis @kreisr1 RT @abrewi3010: T1 Shame is also a symptom for #caregivers too. Possible symptom of being burnt out or lack of self care. #patientchat |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: This! The 'what if' game we play with ourselves holds us back from living our best life! #patientchat https://t.co/2OEvWl… |
![]() | 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 |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: Women are culturally conditioned to be ashamed of their bodies. One of a zillion reasons I'm an atheist, actually. #patientchat |
![]() | Richard Kreis @kreisr1 RT @power4patients: Hi everyone. It's Andrea from PEN. Happy to join you from Boulder, CO on this lovely Friday #patientchat |
![]() | Richard Kreis @kreisr1 RT @Elizabe85727641: Greetings, Liz Kelly, joining late #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 provide… |
![]() | Richard Kreis @kreisr1 RT @AnnePolta: Research actually has shown that women's symptoms aren't always taken as seriously as men's. #patientchat https://t.co/QqvQq… |
![]() | Richard Kreis @kreisr1 RT @Elizabe85727641: T1 Shame/blame plays into the defensive, pre-determined role one take to avoid listening/ engaging with client #patien… |
![]() | Richard Kreis @kreisr1 RT @power4patients: Let's not forget shame felt by #caregivers when they struggle with providing care & the burnout that often comes with i… |
@ A.M.E.N. #PatientChat https://t.co/CYuqMQS7pz | |
![]() | Richard Kreis @kreisr1 RT @IFFGD: A1 Shame and stigma are significant barriers to obtaining an accurate diagnosis & proper care for many pts. #patientchat |
![]() | Richard Kreis @kreisr1 RT @abrewi3010: T2 shame has prevented me from seeking #Mentalhealth help on several occasions. #PatientChat |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: T1: Numerous roles; to an extent shame and preconceived notions can go hand in hand some conditions. HCP perception and pu… |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: T1: Can be big with family and friends also; mostly because of how they are perceived being around someone sick.. #patien… |
![]() | Richard Kreis @kreisr1 RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hr. You can engage w/others… |
![]() | Richard Kreis @kreisr1 RT @Elizabe85727641: T2 Shame = not taking care of self/self-reporting was personal burden till someone listened to me & practiced Pt-cente… |
![]() | Richard Kreis @kreisr1 RT @power4patients: Shame&stigma often debilitating as symptoms @lil_lytnin talks about it& you won't soon forget her words https://t.co/2F… |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: Shame actually can have an impact on mortality/morbidity statistics if we looked further, d/t not seeking care… |
![]() | Vida 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 @fireflyrn84: T2: Shame hasn’t prevented me from seeking treatment, but prevented me from being able to access svcs d/t how my spouse se… |
![]() | Richard Kreis @kreisr1 RT @power4patients: T3 I experienced shame as a caregiver. Wanted to scream "I can't do this anymore!" to everyone I met, depression soon f… |
![]() | Richard Kreis @kreisr1 RT @patientchat: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat |
![]() | Eat - Sleep - Yoga @_iheartyoga I Love Yoga Pants Grab it=> https://t.co/AUbLM8cnZQ #iloveyogar #yogaclothing #yogahoodies #yogaleggings #patientchat https://t.co/GHx28GermJ |
![]() | Rie Lopez, MPH (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… |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: T3: Weight is a huge source of shame. Various meds by themselves cause issues. Pathophysiology is huge w/disease. Many una… |
![]() | Richard Kreis @kreisr1 RT @patientchat: T1: What role does shame play in healthcare for patients? #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: T3: What are your experiences of disease and the issue of shame? #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @Clara_Health @RieOfLetters I'll flip that, say YES, we all DO need to "hold our own" at point of care. By participating, pushing back on paternalism. #patientchat |
![]() | Anne Polta @AnnePolta T4 Doing the research helps give me context. Many long-term cancer survivors have issues, so I know it isn't just me. #patientchat |
![]() | 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 |
![]() | 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 |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: I think women are seen as more concerned/anxious and don’t necessary get the correct care. Also symptoms differ me… |
@ T5: Talk with others and let them express their feelings, be that shoulder for someone to lean on. Makes the dx process easier #patientchat | |
![]() | Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A3: That I was "exaggerating"... I sometimes use my Phone to document orthostatic BPs if they are normal in docs offi… |
![]() | Richard Kreis @kreisr1 RT @patientchat: T5: How have you overcome feelings of shame or helped others overcome shame? #patientchat |
![]() | Richard Kreis @kreisr1 RT @Elizabe85727641: T3 Shame & guilt seem to pervade societies, especially for women who lack physical/$$/Cultural Power or precedent. #pa… |
![]() | 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 |
![]() | 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. #patientch… |
![]() | Patient Chat @patientchat Topic 6 (T6:) coming up... https://t.co/40Js21RTUn #patientchat |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: A4: Women are culturally conditioned to be ashamed of their bodies. One of a zillion reasons I'm an atheist, actually. #pa… |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: A.M.E.N. #PatientChat https://t.co/CYuqMQS7pz |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 T5 Persistence to increase knowledge, practice reflection/ outreach to others, listen to other stories to find common themes. #patientchat |
![]() | Melissa VanHouten @melissarvh A5 It is also helpful to know you are not alone & there are others who understand the difficulties & can talk, assist. #patientchat |
![]() | Rie Lopez, MPH (she/her) @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 @RieOfLetters: T4: Some of it disposition, but most is social conditioning & expectations where the 'norm' is wellness and 'stiff upper… |
![]() | Richard Kreis @kreisr1 RT @vida: @patientchat A1 Patients and clients may feel embarrassed to ask questions. It is our job to make them feel comfortable. #patien… |
![]() | Richard Kreis @kreisr1 RT @AnnePolta: T4 Doing the research helps give me context. Many long-term cancer survivors have issues, so I know it isn't just me. #patie… |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: @Clara_Health @RieOfLetters I'll flip that, say YES, we all DO need to "hold our own" at point of care. By particip… |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: @Elizabe85727641 How do we give patients the power? We try to provide education and resources to help. What do you… |
![]() | Richard Kreis @kreisr1 RT @melissarvh: A5 You must know your own worth & understand that those "shaming" are the ones at fault. I try 2 build up others & offer sa… |
![]() | Richard Kreis @kreisr1 RT @vida: A4 Some may feel more shame than others due to past experiences or trauma. #patientchat |
![]() | STELLAR Study @StellarStudy T5 Sharing your experience and making health an open discussion helps to break the shame. #patientchat |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: T5: Talk with others and let them express their feelings, be that shoulder for someone to lean on. Makes the dx process ea… |
![]() | Richard Kreis @kreisr1 RT @vida: A5 Our #vidacoaches are trained to show empathy and kindness. #patientchat |
![]() | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey General comment: here's how far I've moved from shame - an open-kimono #epatient #woke story: https://t.co/RTWpRD6J6J #patientchat |
![]() | Richard Kreis @kreisr1 RT @yourgpsdoc: T5: I am a pediatrician and tellall of my adolescents there is nothing they can tell me that will shock me. I need… |
![]() | Richard Kreis @kreisr1 RT @angelee828: @brkthrough_crew Definitely! I have found talking to other patients has helped immensely and finding providers I ca… |
![]() | Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz A4: Unfortunately, young women are too often given the label of "too stressed" and written off as a result. #invisibleillness #patientchat |
![]() | 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… |
![]() | 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. #pat… |
![]() | 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 |
@ Don’t compare me to the drug seekers. Compare me to ME and that alone. #PatientChat https://t.co/j3SmT31Ers | |
![]() | Richard Kreis @kreisr1 RT @StellarStudy: T5 Sharing your experience and making health an open discussion helps to break the shame. #patientchat |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: General comment: here's how far I've moved from shame - an open-kimono #epatient #woke story: https://t.co/RTWpRD6J6J #pa… |
![]() | Vida Health @vida A6 Sharing more information and showing empathy will allow others to open up more. #patientchat |
![]() | IFFGD @IFFGD A6 Educating the general public about these conditions and the burden they pose is critical #patientchat |
![]() | Melissa VanHouten @melissarvh RT @Clara_Health: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empo… |
![]() | Richard Kreis @kreisr1 RT @patientchat: T6: How might we support more patients in overcoming shame around their health? #patientchat |
![]() | Richard Kreis @kreisr1 RT @LifeAccrdingLiz: A4: Unfortunately, young women are too often given the label of "too stressed" and written off as a result. #invisible… |
![]() | Melissa VanHouten @melissarvh RT @StellarStudy: T5 Sharing your experience and making health an open discussion helps to break the shame. #patientchat |
![]() | Richard Kreis @kreisr1 RT @vida: A5 We must allow those in r care time 2 speak, think & be understood. As a #healthcoach it's best 2 repeat back what you heard. #… |
![]() | Your GPS Doc, LLC @yourgpsdoc I agree. "Suck it up" is never appropriate in healthcare. #patientchat https://t.co/q47E4EfNI9 |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empo… |
![]() | Richard Kreis @kreisr1 RT @melissarvh: @RieOfLetters I think we are all works in progress. :) You are fabulous! #patientchat |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters @melissarvh Thank you for saying that. I appreciate it! #patientchat https://t.co/tS7QoM1EmP |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: Don’t compare me to the drug seekers. Compare me to ME and that alone. #PatientChat https://t.co/j3SmT31Ers |
![]() | Richard Kreis @kreisr1 RT @vida: A6 Sharing more information and showing empathy will allow others to open up more. #patientchat |
@ [REDACTED USER] I meant if having shane feelings, can be easier to talk it out and express them instead of holding it in #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 @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 |
![]() | 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 |
![]() | Patient Empowerment Network @power4patients RT @MaryOCMack: T6: by saying your chronic condition could just as easily be mine. It's not your fault #patientchat |
![]() | Vida Health @vida RT @Clara_Health: A5: We work hard to share patient stories on an elevated platform and provide patients the tools they need to become empo… |
![]() | IFFGD @IFFGD RT @Elizabe85727641: T6 Create Open, welcoming environment that offers listening, reflection, connection & follow-up. #patientchat |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: [REDACTED USER] I meant if having shane feelings, can be easier to talk it out and express them instead of holding it in #p… |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: When the patients answer #industry #Doctors #researchers #caregivers and the world should listen! Really #listen.… |
![]() | Richard Kreis @kreisr1 RT @abrewi3010: T6 by working together. Let's form a #arthritis #crohns #cancer #narcolepsy #diabetes antishame CoOp for example. #patientc… |
@burtrosen have to jump out for a meeting, sorry to miss the rest! have a great weekend everyone #patientchat | |
![]() | Richard Kreis @kreisr1 RT @power4patients: @Intakeme Talking about it is the only way through. It only took someone to validate my feelings & I felt the weight li… |
![]() | 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 Casey🇺🇦🌟 @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: https://t.co/26Uao… |
![]() | Anne Polta @AnnePolta T6 It's really important for health care professionals to be educated. Judginess from them can be especially harmful. #patientchat |
![]() | Richard Kreis @kreisr1 RT @MaryOCMack: T6: by saying your chronic condition could just as easily be mine. It's not your fault #patientchat |
@ [REDACTED USER] I agree, reframing is what should be done. Shame isn’t something that anyone should feel. #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 @Elizabe85727641: T6 Create Open, welcoming environment that offers listening, reflection, connection & follow-up. #patientchat |
![]() | Richard Kreis @kreisr1 RT @melissarvh: A6 Take some of the burden off patients & push/lobby providers & others involved in medical care 4 change.They don't get a… |
![]() | Rie Lopez, MPH (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: The best thing to do is genuinely listen to what the patients need & work to meet them. So patients, tell us what you… |
![]() | Richard Kreis @kreisr1 RT @burtrosen: have to jump out for a meeting, sorry to miss the rest! have a great weekend everyone #patientchat |
![]() | Melissa VanHouten @melissarvh RT @RieOfLetters: T6: Share our stories and step out from the shadows. This helps ourselves and others feel less alone and/or 'othered'. #… |
![]() | Richard Kreis @kreisr1 RT @yourgpsdoc: T6: By showing empathy and compassion and through chats like this! #patientchat https://t.co/s9XAboYA2A |
![]() | Richard Kreis @kreisr1 RT @MightyCasey: 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. #patie… |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: [REDACTED USER] I agree, reframing is what should be done. Shame isn’t something that anyone should feel. #patientchat |
![]() | Richard Kreis @kreisr1 RT @patientchat: Topic 7 (T7:) coming up... https://t.co/40Js21RTUn #patientchat |
![]() | 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: Share our stories and step out from the shadows. This helps ourselves and others feel less alone and/or 'othered'. #… |
![]() | Richard Kreis @kreisr1 RT @abrewi3010: T6 let's kill the stereotype of what a patient should be and remember we are all humans that are hurting. #patientchat |
![]() | Alan Brewington @abrewi3010 RT @MightyCasey: A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat |
![]() | Vida 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: 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 |
![]() | Patient Empowerment Network @power4patients RT @MightyCasey: A6: Sunlight. Sharing our own stories gives courage and support to others. Lather, rinse, repeat. #patientchat |
![]() | Alan Brewington @abrewi3010 RT @vida: @abrewi3010 We need to make sure our #caregivers get some time off too plus time for daily #selfcare. #patientchat |
![]() | Vida Health @vida RT @yourgpsdoc: T5: I am a pediatrician and tellall of my adolescents there is nothing they can tell me that will shock me. I need… |
@ 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 [REDACTED USER] For me, a diagnosis meant everything. I had a name for my strange and terrifying symptoms. I SO get this! #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. #patie… |
![]() | Richard Kreis @kreisr1 RT @fireflyrn84: Exactly, patients holding anything back can have negative impact on care. Need all details for comprehensive care… |
![]() | Your GPS Doc, LLC @yourgpsdoc RT @abrewi3010: T6 let's kill the stereotype of what a patient should be and remember we are all humans that are hurting. #patientchat |
![]() | M&B Sciences @mbsciencesinc @abrewi3010 Bringing the #humanity back to healthcare will fix a lot of the current problems. #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 |
![]() | Patient Empowerment Network @power4patients @MightyCasey Sunlight. I couldn't agree more #patientchat |
![]() | Your GPS Doc, LLC @yourgpsdoc RT @Clara_Health: A5: The best thing to do is genuinely listen to what the patients need & work to meet them. So patients, tell us what you… |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters I LOVE THIS! #patientchat https://t.co/eRn8PasEdQ |
![]() | Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #patientchat |
![]() | M&B Sciences @mbsciencesinc [REDACTED USER] [REDACTED USER] @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 |
![]() | 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 |
![]() | Patient Chat @patientchat RT @abrewi3010: T7 Quit putting positive &/or negative labels on moments. They are chapters in a continuous story that isn't done #Patientc… |
![]() | Melissa VanHouten @melissarvh A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgment. #patientchat |
![]() | Richard Kreis @kreisr1 RT @power4patients: @MightyCasey Sunlight. I couldn't agree more #patientchat |
![]() | IFFGD @IFFGD RT @melissarvh: A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgm… |
![]() | Richard Kreis @kreisr1 RT @abrewi3010: T7 Quit putting positive &/or negative labels on moments. They are chapters in a continuous story that isn't done #Patientc… |
![]() | 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 @LifeAccrdingLiz: A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #pa… |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: I LOVE THIS! #patientchat https://t.co/eRn8PasEdQ |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: [REDACTED USER] [REDACTED USER] @TheKyleMurray We've been thinking about how to make those who have not yet encounte… |
![]() | Richard Kreis @kreisr1 RT @StellarStudy: This is an ongoing issue. Creating a safe space for patients to speak up and share their experience is a start.… |
![]() | Richard Kreis @kreisr1 RT @yourgpsdoc: T7: Unfortunately, many don't understand untilnit impacts them or a family member. We need more patient voices at t… |
![]() | Richard Kreis @kreisr1 RT @melissarvh: A7 Must place more emphasis on seeking/receiving help than on the cause or stereotypes associated w/disease. Lose the judgm… |
![]() | IFFGD @IFFGD A7 Patients need to be recognized as key stakeholders & be empowered to make their health needs known 4 themselves & community. #patientchat |
@ We are more than our diseases, we are humans with feelings. We deserve respect and care. A little empathy goes a long ways #patientchat https://t.co/ctRyRwYitO | |
![]() | Anne Polta @AnnePolta General media messages too. There's a lot of oversimplifying and "shoulds" and "shouldn'ts." #patientchat https://t.co/4JTParsRA2 |
![]() | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @patientchat: This topic was inspired by Brené Brown's TED Talk 'Listening to shame' https://t.co/B7pBeOTK5g #patientchat |
![]() | 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.… |
![]() | Richard Kreis @kreisr1 RT @Clara_Health: A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatmen… |
![]() | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @patientchat: T2: Has shame about your health ever prevented or delayed you seeking care or support? #patientchat |
![]() | Mary MACK @MaryOCMack T7: blaming and judging are a huge part of stigmatizing those with ill health. #patientchat |
![]() | Rie Lopez, MPH (she/her) @RieOfLetters [REDACTED USER] Yes! There are some things we can control and other things we can't. We must stop assuming control is the norm. #patientchat |
![]() | Your GPS Doc, LLC @yourgpsdoc RT @LifeAccrdingLiz: A6: Putting on the patient's shoes. Imagine if you were accused of exaggerating... Not uncommon in #Gastroparesis #pa… |
![]() | 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: [REDACTED USER] [REDACTED USER] @TheKyleMurray We've been thinking about how to make those who have not yet encounte… |
@ T7: Work toward making it easier to have open conversations like this to discuss how we feel. The power of community is huge #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 Casey🇺🇦🌟 @MightyCasey CT: Don't let anyone keep you from living your best life. Find your tribe, let them support/guide you to self-advocacy. #s4pm #patientchat |
![]() | Your GPS Doc, LLC @yourgpsdoc RT @Clara_Health: A7: Show the world genuine patient stories- the good the bad and the ugly. Continue advocating for better care & treatmen… |
![]() | 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: Put yourself in the patient's shoes and create a welcoming environment for them to share their concerns. #patientchat… |
![]() | Melissa VanHouten @melissarvh RT @MightyCasey: CT: Don't let anyone keep you from living your best life. Find your tribe, let them support/guide you to self-advocacy. #s… |
![]() | 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, “however, we shall overcome.” #patientchat |
![]() | Your GPS Doc, LLC @yourgpsdoc RT @fireflyrn84: We are more than our diseases, we are humans with feelings. We deserve respect and care. A little empathy goes a lo… |
![]() | Melissa VanHouten @melissarvh RT @Elizabe85727641: T7 Acknowledge multiple sides/causes to life events=wellness/disease, expected/unexpected events, “however, we shall o… |
![]() | Anne Polta @AnnePolta Also applies to people's decisions/choices. Not everyone wants to be super-engaged. Not everyone wants hospice. #patientchat |
![]() | Liz Kennerley #LongCOVID #RareDisease @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, “Your Caregiving or Disability Story” or “Your Not Alone.” Let me know #patientchat |
![]() | Patient Empowerment Network @power4patients RT @MightyCasey: CT: Don't let anyone keep you from living your best life. Find your tribe, let them support/guide you to self-advocacy. #s… |
![]() | Richard Kreis @kreisr1 RT @MaryOCMack: 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… |
![]() | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Hi, Christele here. I'm so sad I'm late and missing all this. #patientchat |
![]() | Richard Kreis @kreisr1 RT @RieOfLetters: [REDACTED USER] Yes! There are some things we can control and other things we can't. We must stop assuming control is the… |
![]() | 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: Work toward making it easier to have open conversations like this to discuss how we feel. The power of community is hu… |
![]() | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @IFFGD: A1 Shame and stigma are significant barriers to obtaining an accurate diagnosis & proper care for many pts. #patientchat |
![]() | Vida Health @vida A7 Destigmatize disease by giving facts, help and support. Never judge. #patientchat |
![]() | 💜⚽🇭🇹♊ 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… |
![]() | Richard Kreis @kreisr1 RT @melissarvh: A7 I'm big on standing up against others' false perceptions, too. Must speak up & demand respect - combat unacceptable beha… |
![]() | ElizabethKelly, Ph.D @Elizabe85727641 CT Importance of expressing self to discover/learn grow with others. Thanks to all for your experiences. #patientchat |
![]() | Richard Kreis @kreisr1 RT @StellarStudy: CT: Put yourself in the patient's shoes and create a welcoming environment for them to share their concerns. #patientchat… |
@ 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, un… |
![]() | Richard Kreis @kreisr1 RT @Elizabe85727641: T7 Acknowledge multiple sides/causes to life events=wellness/disease, expected/unexpected events, “however, we shall o… |
![]() | Richard Kreis @kreisr1 RT @AnnePolta: Also applies to people's decisions/choices. Not everyone wants to be super-engaged. Not everyone wants hospice. #patientchat |
![]() | Patient Chat @patientchat A big thank you to Darla @intakeme for sharing your insights & helping us co-host today #patientchat |
![]() | STELLAR Study @StellarStudy RT @vida: A7 Destigmatize disease by giving facts, help and support. Never judge. #patientchat |
![]() | 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 @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 |
![]() | 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 |
![]() | Patient Chat @patientchat The next Empowered #patientchat will be Friday, November 17th at 1pm ET https://t.co/KbQGqtv5D1 |
![]() | Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with the hashtag #patientchat |
![]() | Vida Health @vida Thanks @patientchat These are always great chats. I (@askdrho) love bringing these types of #patientchat conversations to the forefront. |
![]() | Melissa VanHouten @melissarvh RT @RieOfLetters: CT: Patient communities are strong and supportive, an endless source of compassion and hope for each other. #stronger #pa… |
![]() | Patient Empowerment Network @power4patients RT @patientchat: The next Empowered #patientchat will be Friday, November 17th at 1pm ET https://t.co/KbQGqtv5D1 |
![]() | 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 #LongCOVID #RareDisease @LifeAccrdingLiz A7: It'll be a process. However, I think @TheMightySite could partner with say, @Medscape to put faces to #invisibleillness #patientchat |
![]() | Alan Brewington @abrewi3010 @Intakeme #patientchat https://t.co/E7HyIh4Ft0 |
![]() | Anne Polta @AnnePolta @patientchat @Intakeme Great chat! Many thanks. #patientchat |
![]() | 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! ☺️ #patientchat |
![]() | Alan Brewington @abrewi3010 [REDACTED USER] 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 I’m going to go catch up right now!! 😁 #patientchat |
@ 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 [REDACTED USER] 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 |
![]() | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @angelee828: @brkthrough_crew Definitely! I have found talking to other patients has helped immensely and finding providers I ca… |
@ Thanks for a great chat!! #patientchat | |
@ @RieOfLetters @Intakeme Ooh, me too!!! #Patientchat | |
![]() | Patient Empowerment Network @power4patients @fireflyrn84 @RieOfLetters @Intakeme What a great idea! We would love to help as well 😊 #patientchat |
![]() | Liz Kennerley #LongCOVID #RareDisease @LifeAccrdingLiz CT: Patients can teach you everything, just have to ask the right questions. Can't do this without listening. Invisible CMEs #patientchat |
