#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
– ().
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 @intakeme @power4patients |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Patient Empowerment Network @power4patients Hi everyone! Kara from PEN here and looking forward to today's #patientchat! Learn more about @power4patients here:https://t.co/1gfyjF6uTl |
| Patient Chat @patientchat #patientchat host @intakeme works to empower patients through technology, education and community. |
 | Melissa VanHouten @melissarvh #Gastroparesis patient and advocate #patientchat |
| Patient Chat @patientchat #patientchat host @power4patients https://t.co/ysJcfnnpJx is committed to helping patients connect for better health and care. |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Christina Lizaso @btrfly12 Hi #patientchat’ers. I’m moderating as @patientchat today. I am passionate about community engagement and health. #patientchat |
 | Anne Polta @AnnePolta Happy Friday, everyone! Looking forward to this discussion on this excellent topic. #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 |
| @burtrosen Hi, burt from @HealthSparq here, and also a patient! #Lymedisease #patientchat | |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/iUIZmqVYfv #patientchat |
 | Alan Brewington @abrewi3010 Alan here just for a minute. Work meeting is taking priority today unfortunately. This sounds like a great topic! #PatientChat https://t.co/VRcmsQV2vU |
 | HealthSparq @HealthSparq Good morning/afternoon everyone! @Annerskg for @HealthSparq here - obsessed w/ making #healthcare people-first! #patientchat |
| @burtrosen RT @patientchat: You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/iUIZmqVYfv #patientchat | |
 | Maya Northen Augelli @mayanorthen #mentalheath, #mecfs, and #IBD patient from Philly! #patientchat |
 | Alert1 Medical Alert @Alert1MedAlert Hello #patientchat! Excited to be here for a great conversation today! |
 | Nancy's Point @NancysPoint Hello, all! Nancy here. Educator, blogger, author, advocate. 7 yrs post cancer dx. Also brca2+. I write about all of it. #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is: What Not To Say… https://t.co/PB3ncDYGc4 |
| Maya Northen Augelli @mayanorthen Non- #epatient friends - please excuse excessive tweets for the next hour. I'm in #patientchat. |
| Nancy's Point @NancysPoint Thank you for including my two posts in your invite, btw. #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Pls include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Patient Chat @patientchat @NancysPoint Thanks for being a great advocate and so glad you could be here. #wordsmatter #patientchat |
 | Katie @katie5280 @patientchat Happy Fri-yay! I'm Katie, 7 yr breast cancer survivor, t2 diabetic & @wegohealth Patient Leader Hero nominee! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: @NancysPoint Thanks for being a great advocate and so glad you could be here. #wordsmatter #patientchat |
| Patient Chat @patientchat Here comes the first topic (T1:)... #patientchat |
| Katie @katie5280 RT @patientchat: Join the "What Not To Say" #patientchat Fri 5/26 1pmET as we discuss those awkward conversations about your health. https:… |
 | Inspire @InspireIsHealth RT @JBBC: Great topic for today's #patientchat 1pmET What Not To Say… https://t.co/YaNtHWBNgG via @intakeme https://t.co/t7Easn7UAk |
| Patient Chat @patientchat T1: What are some of the things people have said to you about a disease/condition that really struck a cord? #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T1: What are some of the things people have said to you about a disease/condition that really struck a cord? #patientchat |
| Nancy's Point @NancysPoint @patientchat @NancysPoint You're very kind. Appreciate the opportunity to chat about topic I care so much about. #patientchat |
| Inspire @InspireIsHealth Hello to #PatientChat. John Novack here from Inspire. |
| Maya Northen Augelli @mayanorthen @katie5280 @patientchat @wegohealth Congrats on the Hero nomination! #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T1: What are some of the things people have said to you about a disease/condition that really struck a cord? #patientchat |
| Patient Empowerment Network @power4patients T1: Just a few-"Don't worry", "Everything happens for a reason", "Be strong", or comparing me to other ppl they know w/cancer #patientchat |
 | Two Faces of MS 💋 @TwoFacesofMS @patientchat But you look so good! #patientchat |
| Katie @katie5280 @mayanorthen @patientchat @wegohealth Thank you! Would love to win! #patientchat |
| @burtrosen T1: every person is unique and needs to be treated as an individual, there is no one size fits all #patientchat | |
| Melissa VanHouten @melissarvh T1 "Surely you can eat just a few bites." No. No, I can't. #Gastroparesis #CureGP #patientchat |
| Anne Polta @AnnePolta T1 "You're so brave." No, I'm not. #patientchat |
| Nancy's Point @NancysPoint T1 - Cancer happened for a reason... It's an opportunity for enlightenment...so on and so on... #patientchat |
| Alan Brewington @abrewi3010 T1 I'm on crutches just for the attention. #PatientChat |
| Two Faces of MS 💋 @TwoFacesofMS @patientchat T1: it could be worse #patientchat |
| Nancy's Point @NancysPoint @AnnePolta Oh yes, the you're so brave talk...not helpful to me. #patientchat |
| Patient Chat @patientchat MT @TwoFacesofMS #patientchat T1: it could be worse |
| Maya Northen Augelli @mayanorthen T1: "But you have a good life." "What are you depressed about" "everyone gets exhausted." "You should practice gratitude." #patientchat |
 | Mary MACK @MaryOCMack #patientchat T1. Your heart problems are all nerves |
| Katie @katie5280 @patientchat T1:So much but generally along the lines of how I deserve to get what I have or deserve 2 die based on treatment choices. #patientchat #rude |
| @burtrosen why is there such a lack of understanding of #chronicillness? #patientchat | |
| Maya Northen Augelli @mayanorthen T1: "calm down/relax/chill out". "Others have it so much worse". "You're using your illness as a crutch" "Just try harder". #patientchat |
| Patient Empowerment Network @power4patients T1: "With a positive attitude and mind, you'll beat this"…uhh what?! #patientchat |
| @burtrosen @katie5280 @patientchat whoever told you that is a class A jerk! #patientchat | |
| Katie @katie5280 @TwoFacesofMS @patientchat Wow! Just curious, what is your response to that? #patientchat |
| Nancy's Point @NancysPoint You're over it by now aren't you? If not, why not? #patientchat |
| Patient Chat @patientchat Thanks all for sharing. Topic 2 (T2:) coming up... https://t.co/PB3ncDYGc4 #patientchat |
| Nancy's Point @NancysPoint @JotallyWalksome @NancysPoint @AnnePolta Agree completely. #patientchat |
| Melissa VanHouten @melissarvh T1 "Well, you will be okay. It just takes time." Chronic. It's chronic with no cure -- yet. #Gastroparesis #CureGP #patientchat |
| Anne Polta @AnnePolta Ah yes, the tyranny of positive thinking. This one always burns my bacon. #patientchat https://t.co/CkvrI1ifRN |
| Maya Northen Augelli @mayanorthen T1: "Are u still depressed?" "You're a pawn of the dr/med/therapy system"... "Just pray about it" <- like I need an exorcism #patientchat |
| @burtrosen is anyone else reading these responses and getting really angry and agitated? the lack of #empathy is so sad! #patientchat | |
| Inspire @InspireIsHealth RT @mayanorthen: T1: "Are u still depressed?" "You're a pawn of the dr/med/therapy system"... "Just pray about it" <- like I need an exorc… |
| Christina Lizaso @btrfly12 Yeah - the good cancer thing is just so obnoxious. #patientchat |
| Nancy's Point @NancysPoint Indeed! RT @btrfly12: Yeah - the good cancer thing is just so obnoxious. #patientchat |
| Maya Northen Augelli @mayanorthen @AnnePolta Right? All along I could have just been more optimistic and grateful and I've have beaten genetics! Who knew? (obvious sarcasm) #patientchat |
| Christina Lizaso @btrfly12 RT @burtrosen: is anyone else reading these responses and getting really angry and agitated? the lack of #empathy is so sad! #patientchat |
| Patient Chat @patientchat T2: Why do you think these awkward conversations are so common? Why do we find it so hard to communicate about illness? #patientchat |
| Alert1 Medical Alert @Alert1MedAlert Empathy and understanding for a situation is so important! #patientchat https://t.co/OQEd5tegdr |
| Katie @katie5280 @burtrosen @patientchat It's been from multiple people! Guess when you don't know what to day, you go with the crude route! Lol! #patientchat |
| Mary MACK @MaryOCMack #patientchat society has an unspoken rule that all must be positive |
| Patient Empowerment Network @power4patients T2: I think people feel awkward and don't know what to say so they just blurt out the first thing that comes to mind #patientchat |
| Patient Empowerment Network @power4patients RT @MaryOCMack: #patientchat society has an unspoken rule that all must be positive |
| Mary MACK @MaryOCMack #patientchat illness isn't positive |
| Christina Lizaso @btrfly12 RT @patientchat: T2: Why do you think these awkward conversations are so common? Why do we find it so hard to communicate about illness? #p… |
| Nancy's Point @NancysPoint T2 Great questions. Truth telling often makes others uncomfortable. #patientchat |
| Christina Lizaso @btrfly12 T2: I think people are subconsciously building up mental barriers so they can know it won't happen to them. Mental fallacies. #patientchat |
| Maya Northen Augelli @mayanorthen @Alert1MedAlert Yeah I had to stop listing them lol. I could write a book. #patientchat |
| Anne Polta @AnnePolta T2 Many people genuinely don't know what to say. They're trying to be kind and end up being clumsy. #patientchat |
| @burtrosen T2: lots of chronic illness can't be "seen" couple that with a lack of understanding and #emapthy and you get stupid comments #patientchat | |
| Alert1 Medical Alert @Alert1MedAlert Very much so. That's why awareness and advocacy is needed. #patientchat https://t.co/4LeMA0JKgg |
| Melissa VanHouten @melissarvh T2 No one wants to hear anything other than success stories -- overcoming. They fail to see the small daily battles we overcome #patientchat |
| Nancy's Point @NancysPoint T2 - Difficult conversations are just that, difficult. Still need to have them tho. #patientchat |
| Christina Lizaso @btrfly12 T2: so many taboo's and pressure on putting forth your best face means a culture that can't talk about struggle :( #patientchat |
| Mary MACK @MaryOCMack RT @burtrosen: T2: lots of chronic illness can't be "seen" couple that with a lack of understanding and #emapthy and you get stupid comment… |
| Anne Polta @AnnePolta RT @btrfly12: T2: so many taboo's and pressure on putting forth your best face means a culture that can't talk about struggle :( #patientch… |
| Maya Northen Augelli @mayanorthen T2: In some cases, they're *trying* to help, w/o experience/knowledge. Alternatively, they're ignorantly stigmatizing. #patientchat |
| Christina Lizaso @btrfly12 T2: Not all stories are "inspirational" but all stories matter. #patientchat |
| Christina Lizaso @btrfly12 T2: Oh yeah, some people just can't help but go into "fix it" mode when something hard comes up. #patientchat |
| Melissa VanHouten @melissarvh RT @btrfly12: T2: Not all stories are "inspirational" but all stories matter. #patientchat |
| Alert1 Medical Alert @Alert1MedAlert @mayanorthen We believe it! It must have been hard to tune them out. #patientchat |
| Nancy's Point @NancysPoint T2 I think truth in itself is inspirational. Perhaps sounds corny, but... #patientchat |
| Maya Northen Augelli @mayanorthen @melissarvh Yes! I routinely try to blog when I'm feeling awful I want people to really know what it is like inside anxious, depressed mind #patientchat |
| @burtrosen @btrfly12 especially for things people don't understand #patientchat | |
| Christina Lizaso @btrfly12 RT @NancysPoint: T2 I think truth in itself is inspirational. Perhaps sounds corny, but... #patientchat |
| Maya Northen Augelli @mayanorthen This one makes me SO mad. And makes me realize that person probably doesn't want to understand. #patientchat https://t.co/VvNfUMjCVV |
| Alert1 Medical Alert @Alert1MedAlert Learning how to have difficult conversations about sensitive/serious topics isn't taught #patientchat https://t.co/mRce8wRLiI |
| Melissa VanHouten @melissarvh T2 I think people sometimes don't know what to say & fall back on tired cliches. They mean well but don't know how to handle it #patientchat |
| Katie @katie5280 @patientchat T2: I think that people don’t know what to say, so they either stay silent or say something inappropriate. #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... https://t.co/PB3ncDYGc4 #patientchat |
| Melissa VanHouten @melissarvh RT @mayanorthen: @melissarvh Yes! I routinely try to blog when I'm feeling awful I want people to really know what it is like inside… |
| Anne Polta @AnnePolta @JotallyWalksome Proof that many people truly want to learn how to do this better. #patientchat |
| @burtrosen @JotallyWalksome @btrfly12 one thing i've learned in 20 yrs of marriage is to just shut up and listen some times, fixers have a tough time with that #patientchat | |
| Katie @katie5280 @patientchat T2: I think it’s so hard to communicate because for so long the culture has been to be hush hush about it. #patientchat |
| Patient Chat @patientchat T3: What are some of the language traps surrounding illness? What terms do you hate to hear from others and the media? #patientchat |
| Maya Northen Augelli @mayanorthen T2: also think there's a fine line btwn empathy & selfishness. Ppl try to empathize but can't, & so becomes about them, not u #patientchat |
| Mary MACK @MaryOCMack #patientchat even in doctor's appts I often downplay complaints |
| Christina Lizaso @btrfly12 RT @MaryOCMack: #patientchat even in doctor's appts I often downplay complaints |
| Patient Empowerment Network @power4patients T3: Warrior words like fighter/battle/strong/brave are nice & all, but what if you don't want to be "tough" all of the time #patientchat |
| @burtrosen [REDACTED USER] @melissarvh you're right, its just awkward and people don't like living in awkward #patientchat | |
| Nancy's Point @NancysPoint T3 There are so many...but the war metaphors really grate on my nerves. #patientchat |
| Christina Lizaso @btrfly12 T3: "Prevention" is a word that is rarely appropriate. Risk reduction is often a much more accurate and less stigmatizing term. #patientchat |
| Anne Polta @AnnePolta T2 Trite cultural narratives that reduce us to victims/heroes, victory or loss of a "battle." No room for real stories. #patientchat |
| Maya Northen Augelli @mayanorthen [REDACTED USER] I think ppl want to help (some) but haven't experienced it. So they try to do their best, & it "flops". <-being nice. #patientchat |
| Christina Lizaso @btrfly12 T3: I never want to read in media that someone "lost their battle" - just odious to me. #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: T3: "Prevention" is a word that is rarely appropriate. Risk reduction is often a much more accurate and less stigmatizing ter… |
| @burtrosen @mayanorthen [REDACTED USER] Benefit of the doubt is important but tough after a while #patientchat | |
| Melissa VanHouten @melissarvh T3 "Lost" her battle. Well, we all "lose" eventually. No one is immortal. It is not a battle; it is just life & illness. #patientchat |
 | Lisa Davis Budzinski @Cpnervecenter #patientchat Hi all. I'M LATE-Sorry. Hi to my partner [REDACTED USER] |
| Patient Empowerment Network @power4patients RT @melissarvh: T3 "Lost" her battle. Well, we all "lose" eventually. No one is immortal. It is not a battle; it is just life & illness. #p… |
| Two Faces of MS 💋 @TwoFacesofMS @patientchat T2: personally I find no issues discussing, professionally still huge stigmas #patientchat |
| Maya Northen Augelli @mayanorthen T3: If it's really an advocate, it rarely bothers me bc they're trying to help, & three are only so many applicable words. #patientchat |
| Nancy's Point @NancysPoint T3 - I loathe the implication illness is a gift, opportunity of some sort to reinvent yourself. #patientchat |
| Mary MACK @MaryOCMack #patientchat God has a plan for you |
| Mary MACK @MaryOCMack #patientchat because someone survived. |
| Alert1 Medical Alert @Alert1MedAlert Good point #patientchat https://t.co/TX1mn5VDeW |
 | Annie @Anniefromkansas For people to assume your blood glucose levels are out of control bc you're doing something wrong with diet or exercise. #patientchat |
| Anne Polta @AnnePolta T3 Not just vocab. but also tone -- the undertone of pity or "wow, isn't this person amazing." Don't dehumanize me. #patientchat |
| Nancy's Point @NancysPoint T3- "Lost her/his battle" is at the top of my list of irritating phrases heard over and over. Words matter. #patientchat |
| Christina Lizaso @btrfly12 T3: The brave/hero talk makes me uncomfortable too. Hard to pin down the why.... #patientchat |
 | Trisha Bundy @bundytr5 RT @btrfly12: T2: so many taboo's and pressure on putting forth your best face means a culture that can't talk about struggle :( #patientch… |
| Melissa VanHouten @melissarvh T3 "God gives His strongest warriors the toughest battles." #Gastroparesis patients must be pretty freaking amazing, then. #patientchat |
| Two Faces of MS 💋 @TwoFacesofMS @patientchat T2: "cure" gets tossed around like it's so simple, better treatments with less side effects more realistic #patientchat |
 | Mary @marycray @CleClinicMD The challenge now is to practice healthcare as the art of making what appears to be impossible possible. #ptexp #PESummit #patientchat |
| Christina Lizaso @btrfly12 T3: I think there is a lot of talk and terms that can lead to blaming oneself or others assuming you are to blame. #patientchat |
| Maya Northen Augelli @mayanorthen T3: But if it's not an advocate, basically any mental health term that's become common but is not OK. i.e crazy. #patientchat |
| Anne Polta @AnnePolta I see life differently after cancer but it came at a price. So no, it wasn't a "gift." #patientchat https://t.co/WoPhdXy0Ot |
| Two Faces of MS 💋 @TwoFacesofMS @katie5280 @patientchat "Sure it can always be worse, but today this is my reality" #patientchat |
| Christina Lizaso @btrfly12 CURE!!! That's the term other than "prevention" that really gets to me and that is rarely the most appropriate thing to say. #patientchat |
| Maya Northen Augelli @mayanorthen T3: Also as a MH advocate, when discussing suicide, the word "committed". Crimes and Sins are committed. Suicide is neither. #patientchat |
| Nancy's Point @NancysPoint @AnnePolta Definitely no gift for me either. #patientchat |
| Christina Lizaso @btrfly12 Every journalist and writer should follow @afspnational media guidelines for covering suicides. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... #patientchat |
 | SPBOC Foundation @SPBOCF RT @btrfly12: CURE!!! That's the term other than "prevention" that really gets to me and that is rarely the most appropriate thing to say.… |
| Annie @Anniefromkansas People who equate chronic pain, even with "legitimate" diagnosis, with laziness or being a "freeloader". #patientchat |
| Katie @katie5280 @patientchat T3: It bothers me how the media sometimes portrays stage 4 cancer. Stage 4 doesn’t always mean death or metastasis #patientchat |
| SPBOC Foundation @SPBOCF RT @btrfly12: T2: Not all stories are "inspirational" but all stories matter. #patientchat |
| Patient Chat @patientchat T4: What things have people said to you that you found truly supportive and helpful? #patientchat |
| Melissa VanHouten @melissarvh T4 "What can I do to help?" is 1 of the most supportive phrases I've heard. Also, "Do you want company?" Leaves me in control. #patientchat |
| Patient Empowerment Network @power4patients T4: Honesty - When they admit to not knowing what to say b/c all I really wanted was for them to just be there #patientchat |
| Maya Northen Augelli @mayanorthen T4: Sometimes, no words. Holding me when I break down w/depression. Taking care of things when anxiety is overwhelming. #patientchat |
 | Natalie 🦓 @_Nataliea Anything over-dramatic (my condition periodically ends up on "weirdest conditions ever!!!!" Lists. Awkwardness.) #patientchat https://t.co/U0rwl8nWvn |
| Mary MACK @MaryOCMack #patientchat when do you usually take a nap? |
| Nancy's Point @NancysPoint T4 Instead of, "It's only hair" I liked "I'm sorry you're losing your hair" or "I'm sorry this is happening" sort of comment. #patientchat |
| Annie @Anniefromkansas "It's just positive thoughts or mind over matter." In real life, sometimes "matter" wins. #patientchat |
| Melissa VanHouten @melissarvh T4 Any actions (or words) truly seeking to provide what I want/need -- and not what they THINK I need -- are most appreciated! #patientchat |
| @CfEpilepsy It's not too late to join #patientchat | |
| Lisa Davis Budzinski @Cpnervecenter #patientchat T4 Ask me "What do you need?" Then I can honesty tell you. |
| Maya Northen Augelli @mayanorthen 1000x this!! One of the most difficult things ppl can say is to admit they don't understand but will help. Means so much. #patientchat https://t.co/aALKqtlURp |
| Nancy's Point @NancysPoint T4 Hard to beat, "I'm here for you." #patientchat |
| Christina Lizaso @btrfly12 I think the brave/hero stuff makes it seem like you have super powers and so downplays how hard it really is, daily struggles #patientchat |
| Mary MACK @MaryOCMack #patientchat how many bags of groceries are in the trunk? Where should I put them? |
| @burtrosen T4: what you're going through is ok and normal, u should feel the way u feel, not the way others tell u how u should feel #patientchat | |
| Mary MACK @MaryOCMack #patientchat T4 |
| Melissa VanHouten @melissarvh [REDACTED USER] @power4patients Oh, honesty is greatly appreciated! So right, Ms. Lisa! #patientchat |
| Nancy's Point @NancysPoint T4_ And "being here for you," doesn't have to be in the physical sense either. #patientchat |
| @prgirrll RT @btrfly12: T2: so many taboo's and pressure on putting forth your best face means a culture that can't talk about struggle :( #patientch… | |
| Katie @katie5280 @TwoFacesofMS @patientchat Great answer! I love to tell people, "it's better than a poke in the eye." #patientchat |
| Two Faces of MS 💋 @TwoFacesofMS @patientchat T4: whatever you need I'm there for you #patientchat |
| SPBOC Foundation @SPBOCF Follow #patientchat now for a fantastic livestream of thoughts re: the social realities of #cancer. @gyncsm #ovariancancer |
| Nancy's Point @NancysPoint RT @Anniefromkansas: People who equate chronic pain, even with "legitimate" diagnosis, with laziness or being a "freeloader". #patientchat |
| Christina Lizaso @btrfly12 RT @Alert1MedAlert: Learning how to have difficult conversations about sensitive/serious topics isn't taught #patientchat https://t.co/mRce… |
| Two Faces of MS 💋 @TwoFacesofMS @katie5280 @patientchat 😜 lol #patientchat |
| Annie @Anniefromkansas Being offended at label "disabled". I'm not "differently abled". I'm in wheelchair dt bone pain.There are things I can't do. #patientchat |
| Katie @katie5280 @patientchat T4: I appreciated those who said “I don’t know what to say” and the one who forwarded me the What Cancer Can Not Do poem. #patientchat |
| Christina Lizaso @btrfly12 MT #patientchat @decipher_bc Replying to @btrfly12: I've had to unlearn that a bit, to listen instead of rushing to problem solving. |
| Patient Chat @patientchat Final topic (T5:) coming up... #patientchat |
| Patient Chat @patientchat T5: What are the kinds of things you don’t want to hear specifically from doctors and other members of your healthcare team? #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T5: What are the kinds of things you don’t want to hear specifically from doctors and other members of your healthcare tea… |
| Melissa VanHouten @melissarvh T5 "It's probably just stress." Yes, well, relieving my symptoms would relieve some of my stress. How about we work on that? #patientchat |
| Mary MACK @MaryOCMack #patientchat dismissive statements that end communication |
| Annie @Anniefromkansas Like anyone else in life I have good days & bad days. Usually more good but don't expect "Pollyanna" every day. #patientchat |
| Anne Polta @AnnePolta T4 What really helped me were the people who just listened without being judgmental or feeling they had to fix the situation. #patientchat |
 | Shereese Maynard, MS; MBA @ShereeseMayMba [REDACTED USER] I can tell you from a policy POV, the term is usually jurisdiction & service provided-specific. There are actually some regs #patientchat |
| Patient Chat @patientchat You can find links to more thoughts on what to say and what not to say in today's #patientchat event listing: https://t.co/PB3ncDYGc4 |
| Anne Polta @AnnePolta RT @melissarvh: T5 "It's probably just stress." Yes, well, relieving my symptoms would relieve some of my stress. How about we work on that… |
| Maya Northen Augelli @mayanorthen T5: From everyone but my therapist: "What is that? I've never heard of that" when I tell them i have cyclothymia. #patientchat |
| Christina Lizaso @btrfly12 T5: I keep hearing WAY TOO OFTEN about women told physical symptoms were "all in their head". #patientchat |
| Two Faces of MS 💋 @TwoFacesofMS @patientchat T5: scientific results around mice! 99.99% of that never makes it out of the lab #patientchat |
 | Patient Advocacy Strategies @PatientAdvStrat I So agree with you @btrfly12 it's not a win/lose, zero sum game. #FightOn #patientchat https://t.co/SH3CPFZpLQ |
| Nancy's Point @NancysPoint T5 - When "complaining" about issues, them implying something along the lines of, you should be grateful you're alive. #patientchat |
| Melissa VanHouten @melissarvh T5 "In the meantime, try to eat a little more." #Gastroparesis #CureGP #patientchat |
| Christina Lizaso @btrfly12 T5: I also hear WAY TOO OFTEN of patients told "you're to young for X,Y,Z" and doctors and years later it is in fact X,Y,Z. #patientchat |
| Maya Northen Augelli @mayanorthen T5: Don't want cutesy-fluffy sugarcoated, nor for them to be a jerk in delivering bad news. Honest but nice enough. #patientchat |
| Katie @katie5280 @patientchat T5: Not encouraging a second opinion (if necessary) or giving you options. #patientchat |
| Melissa VanHouten @melissarvh T5 And my all-time favorite: "#Gastroparesis does not cause pain." That's when you know it's time to walk out the door. #CureGP #patientchat |
| Christina Lizaso @btrfly12 @JotallyWalksome The reluctance to talk about the financial side - which impacts your care and exp. - can be tough. #patientchat |
| Christina Lizaso @btrfly12 RT @melissarvh: T5 And my all-time favorite: "#Gastroparesis does not cause pain." That's when you know it's time to walk out the door. #Cu… |
| Nancy's Point @NancysPoint T5- Being told, "you'll be fine," irked me early on. No one knew that. Felt dismissive. #patientchat |
| Melissa VanHouten @melissarvh RT @NancysPoint: T5- Being told, "you'll be fine," irked me early on. No one knew that. Felt dismissive. #patientchat |
| Mary MACK @MaryOCMack #patientchat not sharing their thought processes. |
| Anne Polta @AnnePolta T5 Dismissing the late effects of cancer tx with "but that was so long ago, it can't possibly be causing your symptoms." #patientchat |
| Shereese Maynard, MS; MBA @ShereeseMayMba T5 IMHO care/tx needs to be personal & has to address the whole personal. Words said to generalize a person's dx is ill-advised #patientchat |
| Two Faces of MS 💋 @TwoFacesofMS What not to say to ppl living with diseases @patientchat #patientchat https://t.co/DBRNaziXa4 #MS #MultipleSclerosis |
| Christina Lizaso @btrfly12 RT @AnnePolta: T5 Dismissing the late effects of cancer tx with "but that was so long ago, it can't possibly be causing your symptoms." #p… |
| Maya Northen Augelli @mayanorthen T5: All but my therapist tiptoeing around my mental health. If I can talk openly about it they should be able to too. #patientchat |
| Anne Polta @AnnePolta RT @mayanorthen: T5: Don't want cutesy-fluffy sugarcoated, nor for them to be a jerk in delivering bad news. Honest but nice enough. #patie… |
| Mary MACK @MaryOCMack #patientchat being treated as if I'm difficult even when I've been spot on |
| Melissa VanHouten @melissarvh [REDACTED USER] Exactly, Ms. Lisa! "Shouldn't" is irrelevant. Either this is or you need to find the new thing that is. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Lisa Davis Budzinski @Cpnervecenter #patientchat T5-Don't need a fresh new doctor asking , "But have u tried this?" We're not pain newbies. We know our Conditions inside & out |
| Maya Northen Augelli @mayanorthen T5: Not considering how medications (not for my mood cycling) could affect my mentalhealth #patientchat |
| Mary MACK @MaryOCMack #patientchat it's a team, so adversarial behaviors are confusing to me |
 | BearOfTheLongNow FreePalestine❤ @Theresthatbear RT @ShereesePubHlth: T5 IMHO care/tx needs to be personal & has to address the whole personal. Words said to generalize a person's dx is il… |
| Patient Empowerment Network @power4patients CT: Every patient is different. Assess their attitude and situation before offering any words of "encouragement" or advice #patientchat |
| Mary MACK @MaryOCMack #patientchat I look up to my doctors and hold them in high esteem. Still it's a team |
| Melissa VanHouten @melissarvh RT @burtrosen: T4: what you're going through is ok and normal, u should feel the way u feel, not the way others tell u how u should feel #… |
| Christina Lizaso @btrfly12 CT: I'm so thankful for everyone who comes and shares their truths on #patientchat |
| Nancy's Point @NancysPoint CT: Being your own best advocate is a skill that takes practice too. You get better at it over time. #patientchat |
| Melissa VanHouten @melissarvh RT @power4patients: CT: Every patient is different. Assess their attitude and situation before offering any words of "encouragement" or adv… |
| Shereese Maynard, MS; MBA @ShereeseMayMba @Cpnervecenter Or hasty generalizations. "We're not seeing that w/ this dx. Generally speaking, you should be feeling this . . ," Excuse me! #patientchat |
| Anne Polta @AnnePolta @JotallyWalksome @MaryOCMack Or "demanding." #patientchat |
| Melissa VanHouten @melissarvh @JotallyWalksome @MaryOCMack Yes! I am apparently frequently "noncompliant." #patientchat |
| Shereese Maynard, MS; MBA @ShereeseMayMba @MaryOCMack Collaborative care will always trump adversarial care. Most Drs want to work with us, not at us. #patientchat |
| Lisa Davis Budzinski @Cpnervecenter @ShereesePubHlth Absolutely! |
| Anne Polta @AnnePolta CT Listen. Don't project; don't judge. Everyone has their own narrative. Let them own their story. #patientchat |
| Mary MACK @MaryOCMack #patientchat @JotallyWalksome Exactly |
| Patient Chat @patientchat [REDACTED USER] make sure you share any posts to the #patientchat hashtag :) |
| Maya Northen Augelli @mayanorthen CT: It's nice to be reminded that there are others who understand my frustrations. illness often feels lonely. #patientchat |
| Patient Empowerment Network @power4patients Thank you @btrfly12 for moderating another great chat today. Happy Memorial Day weekend everyone! #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for sharing of yourself. Contact us here or at @intakeme @power4patients anytime. |
| Nancy's Point @NancysPoint CT: Be real. Be you. It's enough. Can't be said often enough. #patientchat |
| Christina Lizaso @btrfly12 CTper Emily McDowell: “I’m here,” and “I’m thinking about you,” and “How are you doing today?” and then let the person talk. …” #patientchat |
| Melissa VanHouten @melissarvh Thank you so much for another helpful and informative chat! Looking forward to the next! #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. #patientchat |
| Patient Chat @patientchat Join us and @HealthSparq Fri, 6/9 1pmET for the next #patientchat "Finding Your Tribe" https://t.co/h5ffWwyWxx #WTFix #WhatTheHealthCare |
| Nancy's Point @NancysPoint CT: Thanks for the great chat, all. TY for moderating, @btrfly12. #patientchat |
| Alert1 Medical Alert @Alert1MedAlert CT: It's great to see how much support is in this community. We always learn so much when we join in! #patientchat |
| Patient Chat @patientchat Empowered #patientchat schedule note: The summer chats will be once/month Jun 9, Jul 7, and Aug 4 - Fridays 1pmET. https://t.co/BYkMheqssc |
| @burtrosen great chat so real and authentic it inspires me thanks everyone for being so honest & sharing this is what fixes the mess #patientchat https://t.co/MdgEFt2zYx | |
| Lisa Davis Budzinski @Cpnervecenter #patientchat CT Thanks again for a fun & enlightening round of tweetchat. HAPPY MEMORIAL DAY. |
| Patient Empowerment Network @power4patients RT @patientchat: Empowered #patientchat schedule note: The summer chats will be once/month Jun 9, Jul 7, and Aug 4 - Fridays 1pmET. https:/… |
| Patient Chat @patientchat As May wraps up, there's still time to support #MentalHealthMonth https://t.co/MW2ZtwP2tT @NAMICommunicate #patientchat #IntoMentalHealth |
| @burtrosen so excited to be partnered on this one with such an inspiring group of real people who care. i feel honored, really #patientchat https://t.co/yx3QO7YfRZ | |
| Patient Chat @patientchat The first Sunday in June (6/4/2017) is National Cancer Survivors Day. Learn more: https://t.co/BR8Bnn3WdO @SurvivorsDay #patientchat |
 | Quoth the Pigeon @quoththepigeon False modesty is the most decent of all falsehoods. #patientchat |
| Patient Chat @patientchat Our ePatient101 courses are open. Sign up for self-paced courses on becoming a more empowered patient https://t.co/uzxXSiVAyv #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
 | Pancamo @Pancamo5 https://t.co/1B4oRXFO9v #repost #instagram No Watermark! #patientchat 4829722 |
| Christina Lizaso @btrfly12 #patientchat: https://t.co/KvFTVxKO9T |
| BearOfTheLongNow FreePalestine❤ @Theresthatbear RT @melissarvh: T5 And my all-time favorite: "#Gastroparesis does not cause pain." That's when you know it's time to walk out the door. #Cu… |
| Lisa Davis Budzinski @Cpnervecenter #patientchat Have a wonderful weekend everyone. And a great Memorial Weekend here in the U.S. |
| Christina Lizaso @btrfly12 #patientchat #nostigma https://t.co/pnMFY9KzAn |
 | J Fashion & Cosplay @jpcostume Lino Lakes , #Wellesley2017 , #WorldDraculaDay , Dan Lambert , #patientchat , #26May , Far Cry 5 , Sprig |
| HealthSparq @HealthSparq RT @burtrosen: so excited to be partnered on this one with such an inspiring group of real people who care. i feel honored, really… |
| Patient Chat @patientchat RT @katie5280: @patientchat T1:So much but generally along the lines of how I deserve to get what I have or deserve 2 die based on… |
| Patient Chat @patientchat RT @TwoFacesofMS: @patientchat T2: "cure" gets tossed around like it's so simple, better treatments with less side effects more realistic #… |
| Patient Chat @patientchat RT @TwoFacesofMS: @patientchat T5: scientific results around mice! 99.99% of that never makes it out of the lab #patientchat |
| Patient Chat @patientchat RT @katie5280: @patientchat T5: Not encouraging a second opinion (if necessary) or giving you options. #patientchat |
#patientchat content from Twitter.