#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Parijat - On 🧵s & 🐘 & 💙sky @ParijatDesh RT @ParijatDesh: Think you might have #PPD or #PPA but your doctor is dismissing you or not taking you seriously? Keep looking for a doctor who will listen. You deserve support, health and happiness. https://t.co/ou1qw9rYrI #deliveringmiracles #postpartum #obgyn #patientchat #maternalhealth https://t.co/7bKUyGdi18 |
| Patient Chat @patientchat Hi #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat |
 | Heather McCullen @H_SalemOaks Hi #patientchat, Heather from outside of Ann Arbor Michigan. So far I'm only seeing tweets from @patientchat, I hope it isn't a twitter issue. |
 | Patient Empowerment Network @power4patients RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with others on the topic. |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs & history. #patientchat |
 | Carly Flumer (she/her) @carlyflumer @patientchat Hi! I’m Carly, a #thyroidcancer survivor and future patient advocate! #patientchat |
 | Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/UENH6hX6z9 |
 | Kevin Freiert @K_SalemOaks Kevin from Salem CT here. I don't think it 'tis twitter. |
 | Vera Rulon FAHIMA @vrulon #patientchat @vrulon here from NY. Looking forward to the chat!! |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/Vgxd45poj0 #patientchat |
 | Amanda G @LAlupusLady RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs & history. #patientchat |
| Heather McCullen @H_SalemOaks #patientchat |
| Patient Empowerment Network @power4patients @H_SalemOaks @patientchat Hi Heather! Hope it's not a Twitter issue but fear it may be a "Friday in mid-summer issue" #patientchat |
| Patient Empowerment Network @power4patients @vrulon Welcome! #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings, all - loudmouthed #citizenscience #opendata firestarter here. Have a history as family caregiver/manager and #cancer patient. #patientchat |
| Patient Empowerment Network @power4patients @carlyflumer @patientchat Hey Carly, glad you're here! Happy Friday :) #patientchat |
| Heather McCullen @H_SalemOaks @power4patients @patientchat Entirely possible. It was a hard decisions to come in from outside #patientchat |
| Amanda G @LAlupusLady Hi @patientchat I am Amanda #Lupus patient with a passion for sharing #PatientExperience to improve the healthcare system. #patientchat https://t.co/C3xHoLi1gK |
| Patient Chat @patientchat Today's #patientchat topic is Managing the Emotions of a Chronic Illness https://t.co/lCmrmWDInm https://t.co/uhrmO5CSL3 |
| Carly Flumer (she/her) @carlyflumer @power4patients @patientchat Hello!! Excited for this topic! #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph Hi folks! I'm Christie, and I'm super excited to be participating in my first #patientchat. I am a public health professional focused on patient center interventions for self-advoacy! |
| Patient Chat @patientchat I will introduce new Topics with T1, T2...Please include corresponding T# at the front of every answer - hard to remember but helpful! #patientchat |
 | Christina Lizaso @btrfly12 Waving hello to #patientchat - can't stay, but if you are around the Twittersphere you should check it out. Today's topic is "Managing the Emotions of a Chronic Illness". |
 | Our Odyssey @_OurOdyssey_ Hi everyone! Seth here as one of the co-founders of Our Odyssey, a new organization that connects young adults impacted by a rare or chronic condition to social and emotional support and to help empower them within their community. #patientchat |
 | Alan Brewington @abrewi3010 Alan here. I’m a #rheum & #chronicpain storyteller, plus I’m hungry too. #patientchat |
 | Virginia McIntyre 🇨🇦🇺🇦 @Virginia_McI @patientchat Hi, Virginia from NS #chronicpain #patientchat |
| Christina Lizaso @btrfly12 @kimemson @patientchat very cool - visualization is an underused tool in healthcare! health literacy so enhanced with images! #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 Hey Alan! #patientchat |
| Patient Chat @patientchat T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF |
| Patient Empowerment Network @power4patients @btrfly12 Hi Christina! Hope you're having a great summer #patientchat |
| Alan Brewington @abrewi3010 @power4patients Hi, how are you? #patientchat |
| Patient Empowerment Network @power4patients @LAlupusLady @patientchat Hi Amanda, happy you're here! #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp @patientchat A1: 8 years later and I’m still trying to figure this out! #PatientChat |
| Patient Empowerment Network @power4patients @MightyCasey Helllooo! Great to have you here. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @carlyflumer @patientchat I had thyroid cancer too! #thyca #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: T1: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF |
| Christina Lizaso @btrfly12 RT @patientchat: T1: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF |
| Vera Rulon FAHIMA @vrulon T1: Educate yourself. A good doctor that explains everything in layman's terms helps too. #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 Doing well, thanks. Looking forward to the weekend. I'm landlocked in Colorado but dreaming of the beach. How are you? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: I'm not chronic (altho there is validity in POV that cancer is a chronic condition, it could return at any time) but my breast cancer dx had me writing like a mad dog to process the experience. Turned into a book 🤣 #patientchat |
 | DoubleTrojan @DoubleTrojan @patientchat T1: Most with #cysticfibrosis are diagnosed as infants. However I find that giving back and advocating for the community can give a sense of purpose and empowerment. I’m currently battling @UCLAHealth ‘s dangerous practices that harm the health of CF patients. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF |
| Heather 🇺🇸 @ZHeatherChamp @patientchat I’m Heather. Animal lover and huge fan of DAYS and 90 Day Fiancé. . Oh, and I have Cowden Syndrome and L’hermitte-duclos Disease. #pten #btsm #PatientChat |
| Carly Flumer (she/her) @carlyflumer @patientchat T1: Talking with family. Expressing emotions through journaling. Taking mental health days from work. Knowing I have a support system helps, too. And exercise, which can be therapy as well! The mental aspect of #chronichealth is half the battle. #patientchat |
| Inspire @InspireIsHealth Hello to #patientchat, John Novack here on behalf of Inspire. |
| Heather 🇺🇸 @ZHeatherChamp @MightyCasey Very cool! #patientchat |
 | Speakbox @hi_speakbox @patientchat Having been diagnosed with #PTSD, I can relate to the loss of control. It helped to have a care team who enabled me to play an active role in my care, providers who collaborated with me. ^Aidan #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @vrulon: T1: T1: Educate yourself. A good doctor that explains everything in layman's terms helps too. #patientchat |
| Virginia McIntyre 🇨🇦🇺🇦 @Virginia_McI @patientchat Peer support and self management classes have a valuable role as we learn to live with a chronic illness. #patientchat |
| Alan Brewington @abrewi3010 A1 this is why it’s important to live in the moment. My life changed drastically the nite I fell rock climbing. All that meant was my life path changed, change isn’t good or bad. #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A1: Find support and don't be afraid to seek professional help. #patientchat |
| Heather McCullen @H_SalemOaks @vrulon How to you keep this from making it more scary? Knowing the facts can be empowering, but it can also be really overwhelming. #patientchat |
 | Nick Dawson @nickdawson @patientchat #patientchat one thing I’ve seen over and over is the loss of agency people experience at every step. We found that introducing even a small few choices helps people feel so much more empowered and in control. |
| Vera Rulon FAHIMA @vrulon @carlyflumer @patientchat Thank you for this. Wise words and great advice! #patientchat |
 | CancerDotNet @CancerDotNet T1: “Take the time to accept the news, process your thoughts and feelings, then slowly put yourself back together and prepare for undergoing treatment. @StanfordCancer's Dr. @l_schapira's compassionate advice for when cancer becomes too much: https://t.co/IQpZqUSOkL #patientchat |
 | Radha @radhachitale @patientchat Hello! Digital ed from Inspire here. #patientchat |
| DoubleTrojan @DoubleTrojan @patientchat @UCLAHealth T1: By making sure I look out for those with #cysticfibrosis who are vulnerable, too sick to advocate or don’t have the knowledge, I know I am saving lives. #patientchat |
| CancerDotNet @CancerDotNet @patientchat @power4patients T1: “Take the time to accept the news, process your thoughts and feelings, then slowly put yourself back together and prepare for undergoing treatment. @StanfordCancer's Dr. @l_schapira's compassionate advice for when cancer becomes too much: https://t.co/IQpZqUSOkL #patientchat |
| Patient Empowerment Network @power4patients RT @cvhconsulting: @patientchat A1: @patientchat A1: Find support and don't be afraid to seek professional help. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up… https://t.co/mIpyXdO033 #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A1 this is why it’s important to live in the moment. My life changed drastically the nite I fell rock climbing. All that meant was my life path changed, change isn’t good or bad. #patientchat |
| Alan Brewington @abrewi3010 @power4patients Exhausted and frustrated. It’s time to head to the mountains for some fresh air and to do something “stupid” 😜 #patientchat |
| Patient Chat @patientchat T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t.co/FHQu2xLJUR |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @hi_speakbox @patientchat Yes! Having a supportive provider who will listen to your needs and encourage you to play an active role is so vital, I'm glad you found that support. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ZHeatherChamp 10th anniversary 3rd edition will land in November this year. Stay tuned for updates - have to rewrite last chapter (hello, stupid health care politics tricks!), rigorously revise/re-science-check whole book. I walk my #science fact talk. #patientchat |
| Vera Rulon FAHIMA @vrulon @H_SalemOaks Not sure I have a cogent answer for you. Perhaps knowing that there is something you can do is helpful -understanding of what you do, especially why you need to do it? #patientchat |
| Our Odyssey @_OurOdyssey_ @patientchat T1: We believe that finding the proper peer support is always helpful and will take away from that sense of isolation. #patientchat |
| Alan Brewington @abrewi3010 RT @nickdawson: @patientchat #patientchat one thing I’ve seen over and over is the loss of agency people experience at every step. We found that introducing even a small few choices helps people feel so much more empowered and in control. |
| Our Odyssey @_OurOdyssey_ RT @carlyflumer: @patientchat T1: @patientchat T1: Talking with family. Expressing emotions through journaling. Taking mental health days from work. Knowing I have a support system helps, too. And exercise, which can be therapy as well! The mental aspect of #chronichealth is half the battle. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A2: I have my blog, which helps a bit. And I take/edit photos on @Hipstamatic Which surprising helps me too! https://t.co/ivJDrv7peo #PatientChat |
| Vera Rulon FAHIMA @vrulon @writersamr Oh my... I know I said about educating oneself but you're right about "googling health stuff". I know I personally always end up in the worst case scenario. #patientchat |
 | Melissa VanHouten @melissarvh I'm a control freak, & as such, loss of control has been 1 of most difficult things. In past, I've acted foolishly (like intentionally not eating) 2 "show" this illness who's in control, but, over time, I've learned 2 focus on attitude, which I can still control. #PatientChat |
| Carly Flumer (she/her) @carlyflumer @patientchat T2: Support groups both online & in-person, such as on Facebook. Also, check out @teaminspire! Visiting REPUTABLE websites that’re based on cancer & specific types of cancer to become an #educatedpatient. @theNCI, @AmericanCancer, @MayoClinic are great! #patientchat |
| Vera Rulon FAHIMA @vrulon A1: Speaking to family and friends. Speaking with people who are going through similar. I'm lucky to have a great doctor who is always available. Same with my cardiologist. #patientchat |
| Alan Brewington @abrewi3010 A2 my first physical therapist always told me I’ve earned the right to bad days. I combine that with @justagoodlife it’s just a bad day but not a bad life. #patientchat |
| Our Odyssey @_OurOdyssey_ RT @carlyflumer: @patientchat T2: @patientchat T2: Support groups both online & in-person, such as on Facebook. Also, check out @teaminspire! Visiting REPUTABLE websites that’re based on cancer & specific types of cancer to become an #educatedpatient. @theNCI, @AmericanCancer, @MayoClinic are great! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2: this is tough answer for me this week. Having PTSD issues related to #MeToo ghosts raised by Epstein wall to wall headlines. Physical health = A OK (for an almost-70yo-geezer). Emotional? A little rocky this week. #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8, where are you? 😊 #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A2: This is a tough one. Affirmations, talking to a friend or family member, doing something that makes you happy. Puppy cuddles (for me!) #patientchat https://t.co/LMKGmNWCfT |
| Speakbox @hi_speakbox @patientchat T2: Negative emotions can pop up anywhere, not just in mental health. It would be pretty biased to suggest our evidence-based activity library. So instead, what helped me was time with friends, to just be and not talk about my illness. ^Aidan #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat @teaminspire @theNCI @AmericanCancer @MayoClinic Also check out @_OurOdyssey_ when it develops into an awesome organization led by @Srotberg15 & @tunaturns. #gamechanger #patientchat |
| Heather McCullen @H_SalemOaks @abrewi3010 @JamieRoger8 Good question! #patientchat |
| DoubleTrojan @DoubleTrojan @patientchat T2: turning negatives in to a positive. There is always something that can be done to help others in the community. Currently I’m working on @UCLAHealth ‘s dismissal of infection control needs of #cysticfibrosis needs. Saving lives reduces negative emotions! #patientchat |
 | APFED.org @APFEDorg RT @patientchat: T1: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF |
 | Seth Rotberg @Srotberg15 💪🙌👍💯 We are here to help. Stay tuned for more! #patientchat |
| Carly Flumer (she/her) @carlyflumer @abrewi3010 @justagoodlife Yes! Recognizing that you’re ALLOWED to be upset is key! #patientchat |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hi all. I'm lurking today. My Friday is a little hectic at the office. #patientchat https://t.co/gbf3QHlNVW |
| Melissa VanHouten @melissarvh Don't see emotions as "negative" or "positive." They are just feelings - which I can control and upon which I do not have to act. I feel what I feel; that is reality. But I do not have to dwell on the hardships. I can focus on the blessings, and there are many. #PatientChat |
| Our Odyssey @_OurOdyssey_ Just trying to do our part in the health community to bridge the gap of unmet needs for young adults. #patientchat |
| Vera Rulon FAHIMA @vrulon @MightyCasey Understand. The news is something I try to avoid on when emotional/sad. It's hard to avoid, unfortunately. #patientchat |
| Carly Flumer (she/her) @carlyflumer @writersamr If you remember the book, I’d love to know! #patientchat |
| Our Odyssey @_OurOdyssey_ RT @hi_speakbox: @patientchat T2: @patientchat T2: Negative emotions can pop up anywhere, not just in mental health. It would be pretty biased to suggest our evidence-based activity library. So instead, what helped me was time with friends, to just be and not talk about my illness. ^Aidan #patientchat |
| Virginia McIntyre 🇨🇦🇺🇦 @Virginia_McI RT @patientchat: T2: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t.co/FHQu2xLJUR |
| Alan Brewington @abrewi3010 RT @carlyflumer: @abrewi3010 @justagoodlife Yes! Recognizing that you’re ALLOWED to be upset is key! #patientchat |
 | Richard Kreis @kreisr1 RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T1: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF |
| Patient Empowerment Network @power4patients RT @patientchat: Topic 2 (T2:) coming up… https://t.co/mIpyXdO033 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @vrulon Welp, for those of us who have spent a lifetime covering news, that's like saying "don't breathe" - and this issue impacts women's health in HUGE ways. So ... this ol' war horse keeps marching. #MeToo #patientchat #journo |
| Richard Kreis @kreisr1 RT @teaminspire: Hello to #patientchat, John Novack here on behalf of Inspire. |
| Melissa VanHouten @melissarvh I also find it particularly helpful to advocate for others in the #Gastroparesis community/support groups. Gives my life meaning & purpose. Distracts me from my own worries & makes me feel as if I am contributing toward something worthwhile. #PatientChat |
| Inspire @InspireIsHealth RT @patientchat: T2: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t.co/FHQu2xLJUR |
| Richard Kreis @kreisr1 RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat Topic 3 (T3:) coming up… #patientchat |
| Patient Empowerment Network @power4patients @radhachitale @patientchat Hi Radha! Glad you joined us #patientchat |
| Patient Chat @patientchat @Virginia_McI @hi_speakbox Hi Virginia! Don't forget to include the hashtag #patientchat in all your tweets so everyone can see :) |
| Richard Kreis @kreisr1 RT @Ones_saro: July 12th Empowered #patientchat – Managing the Emotions of a Chronic Illness https://t.co/CfOhxNfgUo |
| Patient Empowerment Network @power4patients RT @melissarvh: Don't see emotions as "negative" or "positive." They are just feelings - which I can control and upon which I do not have to act. I feel what I feel; that is reality. But I do not have to dwell on the hardships. I can focus on the blessings, and there are many. #PatientChat |
| Patient Chat @patientchat T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientchat https://t.co/b3zMrS3soG |
| Virginia McIntyre 🇨🇦🇺🇦 @Virginia_McI @patientchat @Peoplepain Oops for got #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T3: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientchat https://t.co/b3zMrS3soG |
| Vera Rulon FAHIMA @vrulon @MightyCasey Sure does. At least - finally - coming to light in a huge way. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T3: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientchat https://t.co/b3zMrS3soG |
| Patient Empowerment Network @power4patients @writersamr I love that. I'm writing it on a post it and sticking it to my mirror #patientchat |
| Richard Kreis @kreisr1 RT @melissarvh: Don't see emotions as "negative" or "positive." They are just feelings - which I can control and upon which I do not have to act. I feel what I feel; that is reality. But I do not have to dwell on the hardships. I can focus on the blessings, and there are many. #PatientChat |
| Speakbox @hi_speakbox @Virginia_McI @patientchat Unfortunately also true over here on the west coast. Wait-lists are brutal, delayed care is causing harm. Canada, we can do better! #patientchat |
| Alan Brewington @abrewi3010 A2 it’s important to allow negative emotions to run out of fuel on its on. Don’t fight negativity to return to positive, enjoy the negative until you come out of it. Be the best negative ever 😂#patientchat |
| Richard Kreis @kreisr1 RT @patientchat: What do you find helpful in coping with or reducing negative emotions? Let's discuss this Friday 7/12 at 1pmET during the Empowered #patientchat https://t.co/gWedpOpFDe https://t.co/q99zEgtCWA |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat T2: @patientchat T2: Support groups both online & in-person, such as on Facebook. Also, check out @teaminspire! Visiting REPUTABLE websites that’re based on cancer & specific types of cancer to become an #educatedpatient. @theNCI, @AmericanCancer, @MayoClinic are great! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: I count myself lucky that I'm a tough old bird. When it comes to "additional help" I've only needed other cancer-community close buddies to share/commiserate with. And lots of Netflix. Nothing wrong w/escapism! 🤣 #patientchat |
| Vera Rulon FAHIMA @vrulon T3: I'm lucky to have a wonderful partner who reminds me when I'm at that point that I cannot go at it alone #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph Great reminder 👇🏽 |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientchat https://t.co/b3zMrS3soG |
| Carly Flumer (she/her) @carlyflumer @patientchat T3: When I feel that I’m alone and that expressing my feelings to myself is not enough. However, I don’t think there’s a “right time” to get help. I don’t believe you can truly be on your own with a #chronic or #rare disease without some type of support. #patientchat |
| Speakbox @hi_speakbox @patientchat T3: everyone is different, but if "overwhelming" is how you'd describe the feeling - now is absolutely the time to talk! With emotions, there isn't a right time, we all deserve the freedom to express feelings all the time. #patientchat ^Aidan |
| CancerDotNet @CancerDotNet T2: Managing stress and emotions is an important part of your care. Begin by communicating how you’re feeling with your health care team, and educating yourself on ways to cope: https://t.co/BzU45qcWah #pallonc #patientchat |
| CancerDotNet @CancerDotNet @patientchat T2: Managing stress and emotions is an important part of your care. Begin by communicating how you’re feeling with your health care team, and educating yourself on ways to cope: https://t.co/BzU45qcWah #pallonc #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @vrulon @jkbjournalist is a legit superhero. #journo #patientchat |
| Nick Dawson @nickdawson @patientchat There’s the ole adage: when it interferes with your life #patientchat |
| Melissa VanHouten @melissarvh Hard call sometimes. In general, I'd say, if you are experiencing anxiety, worry, depression, fatigue, and/or altered sleep patterns to the point you feel it is significantly interfering w/your life, you should seek help (friends, pastor, counselor, support group). #PatientChat |
| Speakbox @hi_speakbox @writersamr Well said, being able to filter through our thoughts and say, "not today negative brain." That's a superpower! (one we can all acquire) ^Aidan #patientchat |
| Vera Rulon FAHIMA @vrulon @carlyflumer @patientchat Thank you for this insight. My condition is quite common. Can only imagine what people with #rare diseases go through. #patientchat |
 | Ody @OdyO11 I'm late, sorry... I'm a patient from Europe with a rarely diagnosed disease. #patientchat |
| Patient Empowerment Network @power4patients @patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, for your great insight @JBBC #patientchat https://t.co/hsB5W0kUR4 |
| Melissa VanHouten @melissarvh RT @hi_speakbox: @patientchat T3: @patientchat T3: everyone is different, but if "overwhelming" is how you'd describe the feeling - now is absolutely the time to talk! With emotions, there isn't a right time, we all deserve the freedom to express feelings all the time. #patientchat ^Aidan |
| Patient Empowerment Network @power4patients RT @melissarvh: Hard call sometimes. In general, I'd say, if you are experiencing anxiety, worry, depression, fatigue, and/or altered sleep patterns to the point you feel it is significantly interfering w/your life, you should seek help (friends, pastor, counselor, support group). #PatientChat |
| Patient Empowerment Network @power4patients RT @hi_speakbox: @patientchat T3: @patientchat T3: everyone is different, but if "overwhelming" is how you'd describe the feeling - now is absolutely the time to talk! With emotions, there isn't a right time, we all deserve the freedom to express feelings all the time. #patientchat ^Aidan |
| CancerDotNet @CancerDotNet @patientchat T3: Emotional health can impact a person’s ability to make decisions about care. @StanfordCancer's Dr. @l_schapira offers compassionate advice for finding support, recognizing when you might need professional help during cancer treatment: https://t.co/TQxYzTGMRl #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat T3: @patientchat T3: When I feel that I’m alone and that expressing my feelings to myself is not enough. However, I don’t think there’s a “right time” to get help. I don’t believe you can truly be on your own with a #chronic or #rare disease without some type of support. #patientchat |
| Melissa VanHouten @melissarvh RT @power4patients: @patientchat A3: @patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, for your great insight @JBBC #patientchat https://t.co/hsB5W0kUR4 |
| Speakbox @hi_speakbox @melissarvh Let them flow like water, well said. Let's not pathologize emotions, the spectrum of ways to feel is what makes us human and they're all completely normal. ^Aidan #patientchat |
 | Spencer Health Solutions @spencerhealth Sorry to be late! Great discussion so far in the #patientchat! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: @patientchat A3: @patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, for your great insight @JBBC #patientchat https://t.co/hsB5W0kUR4 |
| APFED.org @APFEDorg Adding a licensed psychologist to your team of clinicians helping to manage chronic disease may be as important as your primary physician. Rare disease is overwhelming at times and specific learned coping skills are an important tool. #apfed #raredisease #cegir |
| Patient Empowerment Network @power4patients @carlyflumer @patientchat 100% #patientchat |
| CancerDotNet @CancerDotNet @patientchat T3: Emotional health can impact a person’s ability to make decisions about care. @StanfordCancer's Dr. @l_schapira offers compassionate advice for finding support, recognizing when you might need professional help during cancer treatment: https://t.co/TQxYzTpbZN #patientchat |
| CancerDotNet @CancerDotNet T3: Dealing with stress, anxiety, uncertainty? Try being compassionate toward yourself @StanfordCancer’s Dr. @l_Schapira’s advice for coping with emotions during cancer treatment: https://t.co/fYD6ZCkzmN #patientchat |
| Melissa VanHouten @melissarvh RT @hi_speakbox: @melissarvh Let them flow like water, well said. Let's not pathologize emotions, the spectrum of ways to feel is what makes us human and they're all completely normal. ^Aidan #patientchat |
| CancerDotNet @CancerDotNet @patientchat T3: Dealing with stress, anxiety, uncertainty? Try being compassionate toward yourself @StanfordCancer’s Dr. @l_Schapira’s advice for coping with emotions during cancer treatment: https://t.co/fYD6ZCkzmN #patientchat |
| Richard Kreis @kreisr1 RT @btrfly12: Waving hello to #patientchat - can't stay, but if you are around the Twittersphere you should check it out. Today's topic is "Managing the Emotions of a Chronic Illness". |
| Richard Kreis @kreisr1 RT @carlyflumer: @patientchat T3: @patientchat T3: When I feel that I’m alone and that expressing my feelings to myself is not enough. However, I don’t think there’s a “right time” to get help. I don’t believe you can truly be on your own with a #chronic or #rare disease without some type of support. #patientchat |
| CancerDotNet @CancerDotNet T3: Here are more resources about recognizing signs of stress during #cancertreatment: https://t.co/4o09j7VC8k #patientchat |
| Amanda G @LAlupusLady A1 Depending on the age of diagnosis, a chronic illness can devastate a person. Find support from experts and other patients. Learn as much as you, be your own advocate. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @power4patients @patientchat @JBBC Yeah, I remember clearly, although it was over 10 years ago now, how hard the "now what?" hit me at the end of Cancer Year. #patientchat |
| CancerDotNet @CancerDotNet @patientchat T3: Here are more resources about recognizing signs of stress during #cancertreatment: https://t.co/4o09j7VC8k #patientchat |
| Richard Kreis @kreisr1 RT @power4patients: @patientchat A3: @patientchat A3: This was written with #cancer patients in mind but applicable in many situations Thanks, as always, for your great insight @JBBC #patientchat https://t.co/hsB5W0kUR4 |
| Alan Brewington @abrewi3010 A3 when your quality of life lowers. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up… #patientchat |
| Ody @OdyO11 @patientchat T1: For me, my diagnosis meant regaining control, not loosing it. Being severely symptomatic and undiagnosed was when I had no control. A diagnosis meant I could learn about it, seek doctors with expertise and management options. Being informed is important. #patientchat |
| Richard Kreis @kreisr1 RT @melissarvh: Hard call sometimes. In general, I'd say, if you are experiencing anxiety, worry, depression, fatigue, and/or altered sleep patterns to the point you feel it is significantly interfering w/your life, you should seek help (friends, pastor, counselor, support group). #PatientChat |
| CancerDotNet @CancerDotNet T3: and how to #cope with distress during #cancertreatment: https://t.co/klDXnA4f0f #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Topic 2 (T2:) coming up… https://t.co/mIpyXdO033 #patientchat |
| CancerDotNet @CancerDotNet @patientchat T3: and how to #cope with distress during #cancertreatment: https://t.co/klDXnA4f0f #patientchat |
| Speakbox @hi_speakbox @_OurOdyssey_ A very hearty co-founder hello! Love what you're doing, community and connection are critical across all domains of health. ^Aidan #patientchat |
| Patient Chat @patientchat T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #patientchat https://t.co/DmfmQ1GBPs |
| Spencer Health Solutions @spencerhealth RT @CancerDotNet: T3: Here are more resources about recognizing signs of stress during #cancertreatment: T3: Here are more resources about recognizing signs of stress during #cancertreatment: https://t.co/4o09j7VC8k #patientchat |
| Melissa VanHouten @melissarvh RT @OdyO11: @patientchat T1: @patientchat T1: For me, my diagnosis meant regaining control, not loosing it. Being severely symptomatic and undiagnosed was when I had no control. A diagnosis meant I could learn about it, seek doctors with expertise and management options. Being informed is important. #patientchat |
 | CURE Today @cure_today @patientchat One of our contributors, @Martha__Carlson, recently shared how she practices "Minute Mindfulness" to find the happiness of right now while living with metastatic breast cancer: https://t.co/D0YrTdN5lc #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey THIS JUST IN FROM #PATIENTSINCLUDED DESK - just got word I have full stipend to Cochrane Colloquium in Chile in October! Which is a good thing, since I'M SPEAKING 😎 We return you to regularly scheduled programming. #patientchat |
| CancerDotNet @CancerDotNet T4: Even nurses and physicians, who have extensive knowledge of cancer and its treatments, report feeling anxious when they are the ones sitting in the patient’s chair. Having a friend or relative come with you can help: https://t.co/R6jPTa0z3i #patientchat |
| CancerDotNet @CancerDotNet @patientchat Even nurses and physicians, who have extensive knowledge of cancer and its treatments, report feeling anxious when they are the ones sitting in the patient’s chair. Having a friend or relative come with you can help: https://t.co/R6jPTa0z3i #patientchat |
| Ody @OdyO11 @patientchat T2: For me, it's important to be able to be in touch with other patients. To understand what problems are systemic, what emotions we share - and to seek for solutions together. Especially for patients with rare diagnoses, the internet is important. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T4: T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #patientchat https://t.co/DmfmQ1GBPs |
 | Max59 @clarabo33_mrs RT @LAlupusLady: Hi @patientchat I am Amanda #Lupus patient with a passion for sharing #PatientExperience to improve the healthcare system. #patientchat https://t.co/C3xHoLi1gK |
| Inspire @InspireIsHealth RT @patientchat: T4: T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #patientchat https://t.co/DmfmQ1GBPs |
| Richard Kreis @kreisr1 RT @FibroFlutters: |
| Our Odyssey @_OurOdyssey_ RT @LAlupusLady: A1 Depending on the age of diagnosis, a chronic illness can devastate a person. Find support from experts and other patients. Learn as much as you, be your own advocate. #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @OdyO11 @patientchat There is so much truth to this! When those who feel dismissed and go undiagnosed for years are finally trusted and heard, it can be the most validating and empowering feeling. Thank you. #patientchat |
| Speakbox @hi_speakbox You deserve a minute, fill it with mindfulness. ^Aidan #mentalhealth #mindfulness |
| Amanda G @LAlupusLady A2 coping with #ChronicIllness is hard but sometimes you need expert support, as Gaga says “it is okay to not be okay.” Resources including @MHFirstAidUSA and asking your PCP for a referral. #PatientChat |
| Carly Flumer (she/her) @carlyflumer @patientchat T4: I have a psychologist separate from my endocrinologist, as I suffered from #depression & #anxiety before #cancer, & it definitely came up. It really helped to have someone listen & help me process emotions. #patientchat |
| Vera Rulon FAHIMA @vrulon @patientchat A4: I have spoken with my doctor as stress and emotional reactions are directly related to my condition. Having a good relationship with your doctor is so very important. #patientchat |
| Spencer Health Solutions @spencerhealth Having the ability to have a conversation with your MD as needed is important. How easy is it to get to your #HCP? #patientchat https://t.co/oMEcCI9oSv |
| Melissa VanHouten @melissarvh Not much, as I have many other sources of support (family, friends, groups). I also tend to tolerate stress well & sometimes thrive on reasonable amounts of it, to be quite honest. It tends to motivate me. I am pretty sure I stress out my doctor sometimes, though. 😊 #PatientChat |
| Richard Kreis @kreisr1 RT @LAlupusLady: Hi @patientchat I am Amanda #Lupus patient with a passion for sharing #PatientExperience to improve the healthcare system. #patientchat https://t.co/C3xHoLi1gK |
| Richard Kreis @kreisr1 RT @vrulon: #patientchat @vrulon here from NY. Looking forward to the chat!! |
| Richard Kreis @kreisr1 RT @MightyCasey: Greetings, all - loudmouthed #citizenscience #opendata firestarter here. Have a history as family caregiver/manager and #cancer patient. #patientchat |
| Richard Kreis @kreisr1 RT @carlyflumer: @patientchat Hi! I’m Carly, a #thyroidcancer survivor and future patient advocate! #patientchat |
| Richard Kreis @kreisr1 RT @MightyCasey: T1: T1: I'm not chronic (altho there is validity in POV that cancer is a chronic condition, it could return at any time) but my breast cancer dx had me writing like a mad dog to process the experience. Turned into a book 🤣 #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T2: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t.co/FHQu2xLJUR |
| Richard Kreis @kreisr1 RT @carlyflumer: @abrewi3010 @justagoodlife Yes! Recognizing that you’re ALLOWED to be upset is key! #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @patientchat A4: Absolutely! It was one of the first things I brought up once some of the dust settled. #patientchat |
| Our Odyssey @_OurOdyssey_ @hi_speakbox Hello to you as well Aiden! Always great to meet others in the community. -Seth #patientchat |
| Amanda G @LAlupusLady A3 when you are overwhelmed it is easy to feel isolated, but that is when you need to seek support and additional help. Do not hesitate to share how you are feeling. #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T4: I got burned by my rads-onc (pun intended) calling me "disturbed" during treatment when I pushed back on communication issue(s) I had with her. And I'm a big believer in peer support in emotional health. So I stick to my program. #healthfuturism #patientchat |
 | Janet Kennedy @GetSocialHealth T4: Do you have to speak directly to your #HCP when you are having stress issues? Have you found messaging through your patient portal helpful or ineffective? #patientchat |
| Virginia McIntyre 🇨🇦🇺🇦 @Virginia_McI @patientchat T4 no! I don’t think they would understand. #patientchat and feel it will lead to more prescribing. |
| Speakbox @hi_speakbox @vrulon @patientchat Thumbs up to physicians that address our whole health - mind, and body. ^Aidan #patientchat 👍 |
| Carly Flumer (she/her) @carlyflumer @vrulon @patientchat Yes! It’s so important to have a good relationship with your doctor, especially if you’re going to be seeing them for a long time, which usually is the case for #chronic disease patients. #patientchat |
| Richard Kreis @kreisr1 @patientchat A4: Trifecta Richard here, I spoke to my doctor about this a week after my wife pointed out I was different. The meds they were try out affected my personality and needed changing. Good thing we did. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @patientchat A3: A few months after brain surgeries I had a large panic attack (at home thankfully). Knew RIGHT then and there add’l support (meds) was immediately needed. #Patientchat |
| Inspire @InspireIsHealth @patientchat T4 Here's a column by @FMDGirl that speaks somewhat to the complexities of this topic of the patient/physician relationship https://t.co/ilPngaV9sI. #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @GetSocialHealth I think it depends on the provider! I think patient portals can be a great tool for communication if you have a doctor who will use it! #patientchat |
| Vera Rulon FAHIMA @vrulon Words of Wisdom #patientchat |
| Virginia McIntyre 🇨🇦🇺🇦 @Virginia_McI @carlyflumer @patientchat Many would benefit if could see a Psychologist. #patientchat |
| Janet Kennedy @GetSocialHealth RT @LAlupusLady: A2 coping with #ChronicIllness is hard but sometimes you need expert support, as Gaga says “it is okay to not be okay.” Resources including @MHFirstAidUSA and asking your PCP for a referral. #PatientChat |
| Richard Kreis @kreisr1 RT @GetSocialHealth: T4: T4: Do you have to speak directly to your #HCP when you are having stress issues? Have you found messaging through your patient portal helpful or ineffective? #patientchat |
| Richard Kreis @kreisr1 RT @melissarvh: I'm a control freak, & as such, loss of control has been 1 of most difficult things. In past, I've acted foolishly (like intentionally not eating) 2 "show" this illness who's in control, but, over time, I've learned 2 focus on attitude, which I can still control. #PatientChat |
| Richard Kreis @kreisr1 RT @kimemson: |
| DoubleTrojan @DoubleTrojan @patientchat I tried speaking to a doctor at @UCLAHealth about the fear I feel because he doesn’t follow standard infection control guidelines when treating #cysticfibrosis patients. He was condescending and tried to kick me out of his practice. #patientchat |
| Patient Chat @patientchat @MarkThomHudson Hi Mark! Don't forget to use the hashtag #patientchat in all your tweets so everyone can see :) |
| Carly Flumer (she/her) @carlyflumer @GetSocialHealth I have found it very helpful to have a patient portal! My doctor is very prompt which helps with anxiety. #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up… #patientchat |
| Janet Kennedy @GetSocialHealth Congratulations @MightyCasey! That's great news! #patientchat |
| Ody @OdyO11 @patientchat T4: The emotional impacts of my health condition are a lot less severe than the emotional impacts of encountering ableism and the quick assumptions that symptoms are psychogenic/caused by stress. I have a painful history re this, which means trust has been lost. #patientchat |
| Alan Brewington @abrewi3010 A4 I have. My mental health is broken too, need help. Plus, it’s part of my story which needs to be shared. #patientchat |
| Richard Kreis @kreisr1 RT @LAlupusLady: A2 coping with #ChronicIllness is hard but sometimes you need expert support, as Gaga says “it is okay to not be okay.” Resources including @MHFirstAidUSA and asking your PCP for a referral. #PatientChat |
| Patient Chat @patientchat T5: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https://t.co/mklyzwF8XZ |
| Amanda G @LAlupusLady A4 Yes. As my Dr. said many people with chronic illnesses focus on the physical symptoms when the emotional issues can be just as devastating. #PatientChat |
| Ody @OdyO11 @patientchat T4: Since for me, it feels retraumatizing when HCPs start digging for stress and psychological factors, it is very important for me that it is my decision when to talk about such issues. I have doctors whom I trust with these topics, but it took time. #patientchat |
| Vera Rulon FAHIMA @vrulon @patientchat A5: Seriously? Reimbursement/pricing/costs cause anxiety and stress.... there's a lack of transparency and it is overly complicated. #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat T5: I would say it had met my needs, especially with the introduction of patient portals, as well as online support groups. There’s a TON of info out there to go through, but if you connect with the right people, you become so much more knowledgeable. #patientchat |
| Speakbox @hi_speakbox If you don't have time to join @patientchat directly, here's just a sprinkling of the wisdom being shared. Feeling down? Pick one thing you enjoy, do it. Not going away, follow up with someone for support. You don't need to hold it in. ^Aidan #patientchat #mentalhealth |
| Ody @OdyO11 @patientchat T5: It hasn't, by overfocusing on physical effects of emotional health and by missing differentiation. When a patient isn't able to seek help for psychological stress without physical symptoms being attributed to it, this inhibits access to care. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T5: T5: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https://t.co/mklyzwF8XZ |
| Carly Flumer (she/her) @carlyflumer @patientchat T5: Becoming more knowledgeable can also improve health outcomes, so #healthliteracy is extremely important. However, not enough orgs. in healthcare recognize this need. #patientchat |
| Janet Kennedy @GetSocialHealth I consider myself "healthy" so I truly can't comprehend how those of you with a #chronicillness manage the 24/7/365 aspect of your health challenges. #Courage #Amazing #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph So many patients continue to feel dismissed by their providers, especially those from marginalized groups, including women. This causes more emotional stress for many. Solution? Empower patients and educate providers! #patientchat |
| Alan Brewington @abrewi3010 A5 I’m still upright and kicking which means my story is being heard. The trouble is we measure success by yesterday’s bar, needs to be based on today’s needs. #patientchat |
| Carly Flumer (she/her) @carlyflumer @vrulon @patientchat Yes! Billing is the worst! I have a love/hate relationship with health insurance. #patientchat |
| Melissa VanHouten @melissarvh I'll answer based on what I see in my groups. Support 4 mental/emotional health is sadly lacking in world of chronic illness. My people struggle, suffer, & few seem 2 understand. Hard 2 get referrals 2 qualified counselors & that's why they often turn 2 support grps. #PatientChat |
| Amanda G @LAlupusLady A5 There has not been enough support for people living with chronic health issues to have the specific care and treatment for their mental health issues. My Drs. know about my emotional needs and there are so few resources other than patient-led support groups. #patientchat |
 | Annette McKinnon @anetto T2 Detailed knowledge of the facts about my health situation and the best course to follow for a successful outcome are important, as is having a doctor who is “on my team” ie one who acknowledges that my active involvement is important. #patientchat |
| Ody @OdyO11 @patientchat T3: When I am aware that I won't be heard, I seek help. That's the most negative feeling, and that's the one I can't work myself out of (since my self-efficacy is impaired when I won't be heard). #patientchat |
| Spencer Health Solutions @spencerhealth When dealing with a #chronicillness a network of health peers who understand what you're feeling must be essential. Have you all found an online #patient support group? #patientchat |
| Vera Rulon FAHIMA @vrulon @LAlupusLady I wish there were better solutions for this. Feel for you. #patientchat |
| Ody @OdyO11 RT @cvhconsulting: @OdyO11 @patientchat There is so much truth to this! When those who feel dismissed and go undiagnosed for years are finally trusted and heard, it can be the most validating and empowering feeling. Thank you. #patientchat |
| Melissa VanHouten @melissarvh My people feel judged. Feel like no one understands or takes their emotional struggle seriously. We need to do a far better job of offering resources at all points of care & upon diagnosis. #PatientChat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @vrulon @patientchat Absolutely. Understanding the health system and how to navigate it can feel like a full time job, and it's exhausting. #patientchat |
| Annette McKinnon @anetto T5 The current healthcare system is not focussed enough on team-based healthcare. With a chronic disease we often need more than one provider to help us live life as fully as possible. #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 |
| Ody @OdyO11 RT @anetto: T2 Detailed knowledge of the facts about my health situation and the best course to follow for a successful outcome are important, as is having a doctor who is “on my team” ie one who acknowledges that my active involvement is important. #patientchat |
| Speakbox @hi_speakbox @carlyflumer @vrulon @patientchat With everything a person needs to manage during a health challenge, billing should not be the thing stressing them out. We're going to get our best minds on this, there must be a better way! ^Aidan #patientchat PS: may have more questions. |
| Vera Rulon FAHIMA @vrulon @cvhconsulting @patientchat And right when a person needs to focus on themselves and their health. #patientchat |
| Carly Flumer (she/her) @carlyflumer @anetto #coordinatedcare is incredibly important! #EHRs DO NOT talk to one another! #patientchat |
| Vera Rulon FAHIMA @vrulon @hi_speakbox @carlyflumer @patientchat Yes! Key to address. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Ody @OdyO11 RT @melissarvh: My people feel judged. Feel like no one understands or takes their emotional struggle seriously. We need to do a far better job of offering resources at all points of care & upon diagnosis. #PatientChat |
| Carly Flumer (she/her) @carlyflumer @patientchat CT: #Healthliteracy and emotional support are lacking in the #rare and #chronic disease space. Advocates & #patients LIKE US recognize this & can make a difference by discussing how we feel with our care team & educating ourselves properly. #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @DoubleTrojan @patientchat @UCLAHealth @CF_Foundation @CDCgov Good for you for standing your ground! It's not easy, but these are the actions that lead to change. When we demand better care, it will shift our experiences. I hope you got the care you deserve. #patientchat |
| Annette McKinnon @anetto @spencerhealth I’m still a part of a very long-standing group called RA-Factor on https://t.co/rTVt4C2Jtk. It was an original Yahoo group. #rheum #patientchat |
| Alan Brewington @abrewi3010 Personally I hate the phrase “change is scary” . Life is change. What’s scary is work load change brings. Working hard is how we climb Everest, ski, graduate, love, friendship. Chronic is work. #patientchat |
 | Lieutenant O'Purra @HealSuffering A1: After my diagnosis I fell into a spiral of depression. I had to relearn what being productive meant by changing my own expectations of what I could do with my disabilities. The first step was to acknowledge that I am still capable, just in a different way. #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat CT: @patientchat CT: #Healthliteracy and emotional support are lacking in the #rare and #chronic disease space. Advocates & #patients LIKE US recognize this & can make a difference by discussing how we feel with our care team & educating ourselves properly. #patientchat |
| Spencer Health Solutions @spencerhealth And that team includes the #patient! #Patientchat https://t.co/Tj6gR9MwkE |
| DoubleTrojan @DoubleTrojan @cvhconsulting @patientchat @UCLAHealth @CF_Foundation @CDCgov Thank you. 🙏 I’m still battling @UCLAHealth to treat vulnerable #cysticfibrosis patients with the proper care we deserve. They haven’t been as open as I would have hoped. But I will stop at nothing so my community has access to safe care. #patientchat |
| Amanda G @LAlupusLady CT Learned that despite our various chronic health conditions many patients feel that their emotional and mental health are just as important as the treatment of our physical health. #PatientChat |
| Patient Empowerment Network @power4patients RT @HealSuffering: A1: A1: After my diagnosis I fell into a spiral of depression. I had to relearn what being productive meant by changing my own expectations of what I could do with my disabilities. The first step was to acknowledge that I am still capable, just in a different way. #patientchat |
| Ody @OdyO11 RT @anetto: T5 The current healthcare system is not focussed enough on team-based healthcare. With a chronic disease we often need more than one provider to help us live life as fully as possible. #patientchat |
| CancerDotNet @CancerDotNet CT: Communicating how you're feeling and coping with your health care team is important. They can help you manage and cope with emotions, find support, or point you in the direction of someone who can. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great! Reach out to @power4patients or @patientchat anytime. |
| Annette McKinnon @anetto T5 The healthcare system does not focus on emotional issues with chronic disease. In fact when you have a primary care Doctor who wants to deal with one problem per visit, your chronic disease is barely acknowledged or addressed. #patientchat |
| Speakbox @hi_speakbox @patientchat CT: #patientchat thank you 🥰you've filled me with hope. Leaving encouraged that we can make healthcare better if we do it together with patients, providers, everyone. I've definitely got that #FridayFeeling ^Aidan https://t.co/6V1w1zlafP |
 | jen @ladyJENbugz RT @CancerDotNet: CT: CT: Communicating how you're feeling and coping with your health care team is important. They can help you manage and cope with emotions, find support, or point you in the direction of someone who can. #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour. |
| Janet Kennedy @GetSocialHealth RT @ToniNavarroYes: |
| Carly Flumer (she/her) @carlyflumer @anetto Yes, there’s never enough time! #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @Crohnoid @vrulon @patientchat This is great, Nigel! I developed a face-to-face training that covers some of the things you've mentioned. The goal is to provide folks with the skills and practice they need to self-advocate for themselves. https://t.co/tJetbMFYzL #patientchat |
| Patient Chat @patientchat We are still on our summer schedule so the next Empowered #patientchat will be Friday, August 9th https://t.co/THpOrDxCDw Hope to see you there! |
 | Debi Lewis ☀️ @growthesunshine This is definitely true -- and that emotional attention should be on patients and, when applicable, their caregivers too! |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @DoubleTrojan @patientchat @UCLAHealth @CF_Foundation @CDCgov That's incredible! You are an inspiration for others. #patientchat |
| Vera Rulon FAHIMA @vrulon #patientchat @patientchat thank you for a great chat today. Empowering and helpful! Have a great rest of your day everyone!! |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Melissa VanHouten @melissarvh RT @patientchat: We are still on our summer schedule so the next Empowered #patientchat will be Friday, August 9th https://t.co/THpOrDxCDw Hope to see you there! |
| Janet Kennedy @GetSocialHealth Yikes! Yahoo groups! I'm in some but haven't tried to visit them in YEARS! #patientchat |
 | mary @zebrafinch RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| mary @zebrafinch RT @patientchat: We are still on our summer schedule so the next Empowered #patientchat will be Friday, August 9th https://t.co/THpOrDxCDw Hope to see you there! |
| mary @zebrafinch RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| mary @zebrafinch RT @patientchat: T5: T5: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https://t.co/mklyzwF8XZ |
| mary @zebrafinch RT @patientchat: T4: T4: Have you spoken with your doctor about stress and the emotional impacts of your health condition? Why or why not? #patientchat https://t.co/DmfmQ1GBPs |
| mary @zebrafinch RT @patientchat: T3: T3: Sometimes the negative feelings can be overwhelming. How do you know when it is time to get additional help? #patientchat https://t.co/b3zMrS3soG |
| mary @zebrafinch RT @patientchat: T2: T2: What do you find helpful in coping with or reducing negative emotions? What are some resources? #patientchat https://t.co/FHQu2xLJUR |
| mary @zebrafinch RT @patientchat: T1: T1: Many patients feel they lose control of their life after a major diagnosis. What can help? What did you do to take control? #patientchat https://t.co/HRpnU5yZQF |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: there's massive power in peer community and peer support. Key is to make sure you're getting evidence based info rooted in science on the dx/tx front, and the emotional support you need from that peer/group. #healthfuturism #patientchat |
| Annette McKinnon @anetto CT When the health system does not fill patient and caregiver needs we need to organize ourselves and provide one another with peer to peer help and support. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey And the shameless promotion department here at @power4patients (I'm on the advisory board 🤣) says watch for my next blog post, which talks about exactly ⬆︎⬆︎ that! #patientchat |
| Lieutenant O'Purra @HealSuffering A2 Take 3 index cards & write 10 activities that you do well, then put them in places that you see often in your home or office Each time you see it read the list out loud Take a breath then continue with your day RESOURCE: #mindfulness https://t.co/3USlJr2mSW #patientchat |
| Lieutenant O'Purra @HealSuffering A3 Negative thoughts lead to negative feelings which can lead to #depression & #anxiety Learn the symptoms, speak to your doctor & realize that healing is a whole body process #patientchat |
| Lieutenant O'Purra @HealSuffering A4 Since my injury in 2007, it had been a slow fade to #depression #anxiety #agoraphobia & #PTSD My Dr recognized it. I have been seeing a therapist & Psychologist ever since. There is no shame in seeking help #Breakthestigma #patientchat |
| Ody @OdyO11 CT: For me, emotional support for people living with an impairing chronic health condition would mean to understand ableism and the many contexts in which agency and autonomy is impaired (esp. in healthcare). #PatientChat |
#patientchat content from Twitter.