#WEGOHealthChat Transcript
Healthcare social media transcript of the #WEGOHealthChat hashtag.
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See #WEGOHealthChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Social Health Network @socialhealthnet Thanks for joining this month's #WEGOHealthChat. Today we're discussing a powerful topic: storytelling. https://t.co/uhrw6JATrJ |
| Social Health Network @socialhealthnet RT @wegohealth: #WEGOHealthChat | Today at 1pm ET 5 min until go time! If you're joining the #WEGOHealthChat make sure to say hi, introduce yourself & tell us where you're tweeting from! https://t.co/TafWiMTxBl |
| Social Health Network @socialhealthnet But before we get started, let's get some housekeeping things out of the way! To help organize the chat, questions will be labeled Q1, Q2, Q3, etc & answers should be labeled A1, A2, A3, etc by you! #WEGOHealthChat https://t.co/lW2rQjX4Gd |
 | Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach Looking forward to today's #WEGOHealthChat! Who else is joining? |
 | Julie Croner @justagoodlife Hey everybody! Julie here - #PsoriaticArthritis Patient Leader & @wegohealth. Excited for today's chat #WEGOHealthChat |
 | the digital brink @thedigitalbrink @wegohealth heyyooo #WEGOHealthChat - Casey from WEGO Health here, tweeting from SC! |
| Social Health Network @socialhealthnet If you're unfamiliar with #WEGOHealthChat, here's a great reference guide to get you started! 👉🏻 https://t.co/BISsiziQl2 |
 | Chris Perez @TeamNolan1 @wegohealth Hey I'm Chris from Charlotte, NC. My son was born with Hypoplastic Left Heart Syndrome and I've been writing a blog for Heart Dads for a few years https://t.co/qPQPDvkcgI #HLHS #CHD #WEGOHealthChat |
| the digital brink @thedigitalbrink RT @wegohealth: #WEGOHealthChat | Today at 1pm ET Just us for this month's #WEGOHealthChat as we discuss the importance and power of storytelling as Patient Leaders. Who's joining? @AChVoice @lisadbudzinski @C_DohertyPaints @FunsizeStyle @powerofpain @BNightsCRPS https://t.co/myD7Kv9FkB |
| Social Health Network @socialhealthnet Storytelling has been a rich tradition in cultures all over the world. Before the written word, stories were how history was passed down from generation to generation. It was a way of preserving tradition as well as a method of instruction #WEGOHealthChat https://t.co/S47nJyxo9X |
 | sick lately, words bad (check 📌 for discord info) @bennessb Joining #WEGOHealthChat today! Hi, I'm Brianne 🙋🏻♀️ I interview folx living with chronic illness for my podcast, No End In Sight (https://t.co/u4qnWPU4xT) and I'm obsessed with storytelling in general. I'm back on the diagnostic roller coaster at the moment. |
 | Alan Brewington @abrewi3010 Alan here. I’m a #rheum & #chronicpain & #mentalhealth storyteller who forgot his reading glasses. #WEGOHealthChat |
 | Beth Morton @beth_morton Hello! Beth from Vermont. I have chronic #migraine and advocate for our community. #WEGOHealthChat |
| Social Health Network @socialhealthnet Did you realize each time you sit down at your computer to write, or explain your health condition to a friend or family members, or even visit your doctor, you are telling a story? #WEGOHealthChat https://t.co/mZvG64vhpP |
 | Its ME Matina @justask RT @wegohealth: #WEGOHealthChat | Today at 1pm ET 5 min until go time! If you're joining the #WEGOHealthChat make sure to say hi, introduce yourself & tell us where you're tweeting from! https://t.co/TafWiMTxBl |
| the digital brink @thedigitalbrink RT @wegohealth: Did you realize each time you sit down at your computer to write, or explain your health condition to a friend or family members, or even visit your doctor, you are telling a story? #WEGOHealthChat https://t.co/mZvG64vhpP |
| Social Health Network @socialhealthnet Patient Leaders are the ultimate storytellers, finding innovative ways to communicate the daily trials and tribulations of living with their condition, navigating the healthcare system, and managing relationships with family and friends. #WEGOHealthChat https://t.co/EVItsEWW1m |
| sick lately, words bad (check 📌 for discord info) @bennessb RT @wegohealth: Patient Leaders are the ultimate storytellers, finding innovative ways to communicate the daily trials and tribulations of living with their condition, navigating the healthcare system, and managing relationships with family and friends. #WEGOHealthChat https://t.co/EVItsEWW1m |
| Social Health Network @socialhealthnet So let's jump into YOUR story #WEGOHealthChat |
| Social Health Network @socialhealthnet Q1. What was your motivation to share your health story? #WEGOHealthChat https://t.co/0Qt9AZd82N |
| Alan Brewington @abrewi3010 @justagoodlife Hello! The eyesight headache is developing nicely right now. How are you? #WEGOHealthChat |
 | ISurvivor Lisa Deck @lbdeck Hi all! I’m Lisa from Massachusetts. I’m a four time stroke survivor who has #Moyamoya disease. I’m a passionate advocate for heart, stroke, Moyamoya and rare diseases! #WEGOHealthChat |
| Social Health Network @socialhealthnet @giovannasmemo Oh no! Try this link: https://t.co/9i1EOf6oWI #WEGOHealthChat |
| Beth Morton @beth_morton @justagoodlife Hi Julie! #WEGOHealthChat |
 | Group Medical Supply @GroupMedSupply @wegohealth A1: My motivation to share a health story was to help others know that they aren't alone. Finding support while battling a health issue is critical. #WEGOHealthChat |
| the digital brink @thedigitalbrink RT @wegohealth: Patient Leaders are the ultimate storytellers, finding innovative ways to communicate the daily trials and tribulations of living with their condition, navigating the healthcare system, and managing relationships with family and friends. #WEGOHealthChat https://t.co/EVItsEWW1m |
| Alan Brewington @abrewi3010 A1 I was a typical boy with poor communication skills who was afraid to be vulnerable. I needed to change so my quality of life could change. #WEGOHealthChat |
| ISurvivor Lisa Deck @lbdeck @wegohealth A1: my motivation to share my #stroke story was originally to find others like me. Now I share it to #helpothers so they’re not alone. #WEGOHealthChat |
 | Barby Ingle Official @BarbyIngle A1. I had to learn the hard way and now want to pass on my knowledge to give hope & answers to all patients, caregivers & HCPs. I hope by speaking out about my journey stops it from happening to anyone else. #WEGOHealthChat |
 | Parkinson's Humor @YumaBev @wegohealth Everything I read about #Parkinsons online was depressing or had so many medical terms that I spent most of the time Googling. I decided to decipher that info into fun analogies that even first graders could understand. #WEGOHealthChat |
| Beth Morton @beth_morton A1. I hoped that sharing my story (on Twitter, through my blog) made some part of living with #migraine - and the challenges that come with it - easier for someone else to navigate. I also hope it will bring change. #WEGOHealthChat |
 | Natalie 🦓 @_Nataliea @wegohealth A1 did I even have a motivation? In rare #raredisease world, the expectation to share, to impart “wisdom” (haha) is prevalent and sometimes awkward. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb When I started to get sick, collecting & sharing stories about chronic illness, the diagnostic experience, & everything else felt like a no-brainer. And I get feedback from listeners all the time about how hearing a story like their own was so so validating. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A1: I've been obsessed with storytelling since long before I got sick. In my 20s, I co-founded an event called Stories We Don't Tell, that was specifically focused on building a space where people could safely share stories about all kinds of tough stuff. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb While running this event (& the 2 accompanying monthly storytelling workshops) I saw firsthand how transformative it can be for people to share their experiences. It lifts shame & saves energy & creates an opportunity for our community to consciously support us. #WEGOHealthChat |
| Beth Morton @beth_morton A1. Selfishly, I was motivated to tell my story and connect with others with #migraine to learn and feel less alone. #WEGOHealthChat |
| Social Health Network @socialhealthnet We always love hearing the "why" behind a Patient Leader's mission! Let's dive in more.. #WEGOHealthChat |
 | Amanda G @LAlupusLady A1 my motivation was that people didn’t understand that not all autoimmune illnesses are contagious and the difference between #Lupus and AIDS. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @lbdeck: @wegohealth A1: @wegohealth A1: my motivation to share my #stroke story was originally to find others like me. Now I share it to #helpothers so they’re not alone. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @GroupMedSupply: @wegohealth A1: @wegohealth A1: My motivation to share a health story was to help others know that they aren't alone. Finding support while battling a health issue is critical. #WEGOHealthChat |
| Amanda G @LAlupusLady RT @wegohealth: Patient Leaders are the ultimate storytellers, finding innovative ways to communicate the daily trials and tribulations of living with their condition, navigating the healthcare system, and managing relationships with family and friends. #WEGOHealthChat https://t.co/EVItsEWW1m |
| Alan Brewington @abrewi3010 A1 Socially speaking, especially in Idaho, men don’t talk about pain. We are supposed to suck it up. This isn’t possible with #rheum & #chronicpain that was accelerated by falling off a cliff rock climbing #WEGOHealthChat |
| Social Health Network @socialhealthnet Q2. Was there a defining moment that made you realize you wanted to share your story? #WEGOHealthChat https://t.co/I0BKlPnT7v |
| Social Health Network @socialhealthnet RT @YumaBev: @wegohealth Everything I read about #Parkinsons online was depressing or had so many medical terms that I spent most of the time Googling. I decided to decipher that info into fun analogies that even first graders could understand. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle @justagoodlife Thank you. did you see me win the cup challenge! I Won! I Won! #WEGOHealthChat |
| Natalie 🦓 @_Nataliea A1 creativity helps me process. It’s evolved over time (no time for emo blogging, probably for the best!) #WEGOHealthChat |
| Julie Croner @justagoodlife RT @beth_morton: A1. Selfishly, I was motivated to tell my story and connect with others with #migraine to learn and feel less alone. #WEGOHealthChat |
 | JC-TRADES @jctradesbrokers @wegohealth A2. After getting involved with an AIDS quilt event that I was a keynote speaker at #WEGOHealthChat |
| Social Health Network @socialhealthnet Whether advocacy was used as a coping mechanism, a reaction to watching a loved one suffer, or a response to doctors never having enough answers, the “why’s” behind our advocacy journeys are all unique! Make sure to share your defining moment with your community #WEGOHealthChat |
| Alan Brewington @abrewi3010 A2 I learned of conferences like #medx that wanted the patient story. I was also doing things like testifying before the Idaho Legislature on my own regarding #arthritis. #WEGOHealthChat |
| Amanda G @LAlupusLady A2 The defining moment was when I realized that as a person with the condition I could impact others by sharing my #PatientExperience - helping people understand what #lupus is and how it effects patients was and is still important. #WEGOHealthChat |
| ISurvivor Lisa Deck @lbdeck A2: I remember about 20 years ago after my first 3 strokes when someone from @American_Heart asked me to share my personal #survival story. The supportive response I received was unprecedented and so rewarding. Mostly other patients who said they didn’t feel alone. I was hooked. |
| Amanda G @LAlupusLady RT @wegohealth: Whether advocacy was used as a coping mechanism, a reaction to watching a loved one suffer, or a response to doctors never having enough answers, the “why’s” behind our advocacy journeys are all unique! Make sure to share your defining moment with your community #WEGOHealthChat |
| Social Health Network @socialhealthnet How many of us turned to Dr. Google after a diagnosis only to be terrified? Imagine stumbling upon a Patient Leader's blog instead- what a difference that could make in your processing. #WEGOHealthChat |
| Amanda G @LAlupusLady A2 This GiF... #WEGOHealthChat https://t.co/YO1dMFsKJ5 |
| Barby Ingle Official @BarbyIngle A2. For me sharing happened naturally. The HC system is not always, what we are led to believe. People look up to their doctors and put total faith in them. I have learned though my experiences and through volunteering w the @powerofpain we have responsibility too #WEGOHealthChat |
| Julie Croner @justagoodlife RT @abrewi3010: A2 I learned of conferences like #medx that wanted the patient story. I was also doing things like testifying before the Idaho Legislature on my own regarding #arthritis. #WEGOHealthChat |
| Julie Croner @justagoodlife RT @LAlupusLady: A2 The defining moment was when I realized that as a person with the condition I could impact others by sharing my #PatientExperience - helping people understand what #lupus is and how it effects patients was and is still important. #WEGOHealthChat |
| Parkinson's Humor @YumaBev @wegohealth A2. I was logged into a #Parkinsons chat room at 3am, verbally telling a funny story about getting stuck in my bathtub, when a lady asked me to email her that story so she could show it to her Mum. Several others asked for the same thing. Emails led to blogging #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A2: When I started to get unexplained fatigue & neuro symptoms, my first instinct was to find personal essays & memoirs about navigating the diagnostic experience. There were barely any. It seemed like people only wrote about illness once they had a diagnosis. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb But I was starting to realize that so so many people live in chronic illness limbo for years (or a lifetime!) and that is not a story that we hear often. I think this is isolating & harmful and I felt really ready to share my story & others like mine. #WEGOHealthChat |
| Amanda G @LAlupusLady Hugs from LA! #WEGOHealthChat https://t.co/ahS1WT4TrV |
| Alan Brewington @abrewi3010 RT @bennessb: A2: A2: When I started to get unexplained fatigue & neuro symptoms, my first instinct was to find personal essays & memoirs about navigating the diagnostic experience. There were barely any. It seemed like people only wrote about illness once they had a diagnosis. #WEGOHealthChat |
| Social Health Network @socialhealthnet This. So powerful and so accurate. YOU can bring change. #WEGOHealthChat |
| Parkinson's Humor @YumaBev @wegohealth I was SHOCKED at how quickly my blog spread around the globe. I had readers on 6 of the 7 continents within a month! #WEGOHealthChat |
 | Heather Swift Morrison @heatherswifty RT @wegohealth: This. So powerful and so accurate. YOU can bring change. #WEGOHealthChat |
| Social Health Network @socialhealthnet Moving to Q3. What did you gain from sharing your story? New friends? Emotional Release? Confidence? #WEGOHealthChat https://t.co/SAj4JD3L9W |
| Social Health Network @socialhealthnet That moment you realize you're making a difference.... #WEGOHealthChat |
| Alan Brewington @abrewi3010 A3 the more vulnerable I became the better my content became. Better content leads to intrigue by fellow patients, providers, designers, academic types. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle @justagoodlife I won! I won! I won! https://t.co/nVbKo9RzCc #KenAndBarby Show #WEGOHealthChat https://t.co/v6IgaffjBg |
| sick lately, words bad (check 📌 for discord info) @bennessb Hearing other peoples' stories has made me feel SO MUCH less alone & anomalous. The #1 thing I hear from podcast listeners is that our stories have made them feel less alone. Isolation can be a huge issue in our community, so anything that addresses that is 👍. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A3: Sharing my story & hearing from people who relate has made me way more confident as an advocate without an all-encompassing diagnosis. (Though I'm still hunting for one!) #WEGOHealthChat |
| Alan Brewington @abrewi3010 A3 I’ve definitely cried more since becoming a storyteller/advocate than I have in my life before. Being vulnerable is scary, exhausting, & a rush all packed together #WEGOHealthChat |
 | Lisa Davis Budzinski @lisadbudzinski Please excuse my tardiness. Sliding in quietly in the back #WEGOHealthChat. https://t.co/3f3tirxi4w |
| Amanda G @LAlupusLady A3 Sharing my story helped me understand that I am not alone and that each person’s journey with autoimmune disease(s) is unique. But that fact also makes it more difficult for providers to treat individuals and researchers to discover new meds. #WEGOHealthChat |
 | Sally James @jamesian @wegohealth Powerful positive for #parkinsons in this video by patient in #seattle. https://t.co/CyoYbkjv7y I produced the video. #WEGOhealthchat |
| Parkinson's Humor @YumaBev @wegohealth A3. I live in a rural town, hundreds of miles from a #Parkinsons specialist. I was the FIRST young onset the local neurologist had EVER seen and he'd been in practice for 40 years. I though I was the only one! Now I have friends around the world. I'm not alone. #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A1. My story has taken me from one ailment to another. It began at age 11 with an assortment of #mentalhealth issues, took me through 85% #visionloss, chronic pain, and a hysterectomy. I’ve always been considered a med mystery, in part bc of my young age. #wegohealthchat (1/2) |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A1. My motivation as a storyteller is to validate other young(er) members of the community. Even if their roads LOOK bleak, they don’t have to be. #bipolardisorder #lowvision #hystersyster #WEGOHealthChat — https://t.co/J9Ue3bbOgn (2/2) |
| Amanda G @LAlupusLady @BarbyIngle @justagoodlife @KenRayTaylor USWNT Win World Cup and later that week @BarbyIngle wins the Blue Cup competition. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A3. From sharing my story I gained confidence, knowledge, friendships, best friend, ability to speak up to my providers and be involved and have an intelligent conversation w them instead of one-sided. It helped me learn to be the team captain of my healthcare! #WEGOHealthChat |
| ISurvivor Lisa Deck @lbdeck A3: I gained friends, information, support, a community, a diagnosis, a passion and a life path to bring me purpose ❤️❤️#wegohealthchat |
| Barby Ingle Official @BarbyIngle RT @LAlupusLady: @BarbyIngle @justagoodlife @KenRayTaylor USWNT Win World Cup and later that week @BarbyIngle wins the Blue Cup competition. #WEGOHealthChat |
| Beth Morton @beth_morton A3. I gained a voice and some agency over my health/treatment. I'm hoping it translates into advocacy for others. I gained friends, too! #WEGOHealthChat |
| Social Health Network @socialhealthnet If this isn't one of the hardest lessons most Patient Leaders must overcome.... #WEGOHealthChat |
| Parkinson's Humor @YumaBev @TeamNolan1 @wegohealth EXACTLY! I joke that I can't fly for fear of being on the TSA 'list' because I have readers in Russia, Iraq, Iran and N Korea. #WEGOHealthChat Actually, when I fly, the TSA has always treated me with kindness. |
| Social Health Network @socialhealthnet Seems like there's so much to gain when it comes to sharing your story. It can be scary, but it can open so many doors for you! #WEGOHealthChat |
| Amanda G @LAlupusLady RT @wegohealth: Seems like there's so much to gain when it comes to sharing your story. It can be scary, but it can open so many doors for you! #WEGOHealthChat |
| Alan Brewington @abrewi3010 A3 I think it took 4 to 5 months to physically & mentally recover from my first #medx. That was my first experience with patients outside of my silo. Storytelling is hard work, but it should be hard work. #WEGOHealthChat |
| Amanda G @LAlupusLady #WEGOHealthChat 💓 |
| Parkinson's Humor @YumaBev @wegohealth If you have a chronic condition like #Parkinsons other Patients know more about how to LIVE with the disease than any clinician. #WEGOHealthChat |
| Julie Croner @justagoodlife @abrewi3010 Haha it's hard to come down from that #MedX high! #WEGOHealthChat |
| Group Medical Supply @GroupMedSupply @wegohealth A2: Losing a loved one to mental health made me want to be more open. People shouldn’t have to suffer alone #WEGOHealthChat |
| Social Health Network @socialhealthnet Q4. What advice do you have for those who want to share their story, but are nervous to open up? #WEGOHealthChat https://t.co/o3kEYIsprl |
| Lisa Davis Budzinski @lisadbudzinski @1in20parkinsons So many drafts in Google Docs!! #WEGOHealthChat |
| Parkinson's Humor @YumaBev @1in20parkinsons @wegohealth YES!!! When we get the rare chance to meet in person, it's like meeting a very good friend who moved away years ago. #WEGOHealthChat |
 | Michaela Davert @FunsizeStyle @wegohealth I realized as a society how we view disability and health challenges as a sadness. For me my disability and health conditions are one of my biggest blessings and I wanted to share my perspective with others! #WEGOHealthChat |
| Alan Brewington @abrewi3010 A4 being vulnerable is hard work but the payoff is greater. That said, never be a level vulnerable that causes you harm. Push yourself but don’t go extreme! #WEGOHealthChat |
 | Angels Of Epilepsy, Inc.© @AOEpilepsy @wegohealth A1.) Having epilepsy has caused many changes in my life, some I never would imagine, BUT I did realize that I’m here for a reason. My motivation is sharing my journey and showing others that prayer, faith, & determination is a great medicine! 💜 #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A2. After I was diagnosed with #CRPS, I joined several support groups on FB. Seeing how brave other members were made me realize I, too, wanted to be brave enough to share my story. So many others helped me, so I decided it was my turn to pay it forward. #WEGOHealthChat |
| Amanda G @LAlupusLady A4 Begin by sharing, talking with trusted friends and then you realize the powerful impact one story has... soon you may feel more comfortable telling your story in a blog or on stage. #WEGOHealthChat |
| ISurvivor Lisa Deck @lbdeck A4: My advice is to just start. Just do it! It’s terrifying putting your feelings and personal business out there but I am proof that it helps. And it’s gets easier the more you do it. #YouMatter #WEGOHealthChat |
| Alan Brewington @abrewi3010 A4 quality content is more important than quantity. Tell your story in your voice, will help with quality #WEGOHealthChat |
| Lisa Davis Budzinski @lisadbudzinski @justagoodlife @1in20parkinsons Hi sweet pea! ✨ #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @FunsizeStyle: @wegohealth I realized as a society how we view disability and health challenges as a sadness. For me my disability and health conditions are one of my biggest blessings and I wanted to share my perspective with others! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @AOEpilepsy: @wegohealth A1.) Having epilepsy has caused many changes in my life, some I never would imagine, BUT I did realize that I’m here for a reason. My motivation is sharing my journey and showing others that prayer, faith, & determination is a great medicine! 💜 #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A4: When you share a personal story, your level of disclosure is totally up to you. You can change somebody's life just by publicly sharing your diagnosis or symptoms or specific individual challenges. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb When you start to open up about this stuff and you hear from people who share dx/sx/difficulties with you, you start to realize how powerful it is to share small moments or details that people relate with. It doesn't all have to be deeply emotional sick crises. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb Life or death situations are actually well represented in media. Don't be afraid to share things that feel like they have low stakes. These are often the kinds of problems that make people feel the most alone because they aren't at all represented in media. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A4. Be organized. Start creating list of important parts, who is ur audience, who do U want 2 connect w, where could u best connect w these peeps, in-person, online? Remember when joining a group there R stages forming, storming, norming, performing, adjourning #WEGOHealthChat |
| Social Health Network @socialhealthnet Sometimes, this is exactly where we need to start to really feel comfortable sharing our story #WEGOHealthChat |
| Social Health Network @socialhealthnet Vulnerability can be scary. But you will be surprised how many others will respond and identify with your story. Lean into the unknown, free yourself, and allow others to walk along with you on your journey #WEGOHealthChat |
| Amanda G @LAlupusLady RT @wegohealth: Sometimes, this is exactly where we need to start to really feel comfortable sharing our story #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @bennessb: Life or death situations are actually well represented in media. Don't be afraid to share things that feel like they have low stakes. These are often the kinds of problems that make people feel the most alone because they aren't at all represented in media. #WEGOHealthChat |
| Angels Of Epilepsy, Inc.© @AOEpilepsy @wegohealth A2.) My illness caused a devastation that changed my life. And I share my story and to hopefully get a law passed when it comes to driving with epilepsy. #WEGOHealthChat |
| Amanda G @LAlupusLady RT @wegohealth: Vulnerability can be scary. But you will be surprised how many others will respond and identify with your story. Lean into the unknown, free yourself, and allow others to walk along with you on your journey #WEGOHealthChat |
| Parkinson's Humor @YumaBev @wegohealth A4. Create a new email account just for that. Some people will be negative no matter what and that's THEIR fault, not yours. Be honest, but keep it G rated. Have fun. Get a friend to proofread before hitting Publish. You can remain anonymous if you want. #WEGOHealthChat |
| Alan Brewington @abrewi3010 A4 if you strike trolls that means your message is getting out. Hopefully one day there will be a troll cure. They will hurt you evidently, we all go thru that! #WEGOHealthChat |
| Lisa Davis Budzinski @lisadbudzinski A4 Sharing your story to help those who feel so alone truly helps to quiet those nerves. It’s all about perspective ✨ #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @BarbyIngle: A4. Be organized. Start creating list of important parts, who is ur audience, who do U want 2 connect w, where could u best connect w these peeps, in-person, online? Remember when joining a group there R stages forming, storming, norming, performing, adjourning #WEGOHealthChat |
| Alan Brewington @abrewi3010 Perfectly put! #WEGOHealthChat |
| Social Health Network @socialhealthnet Ok, time to think BIG for Q5. In your wildest dreams, what would sharing your story achieve? #WEGOHealthChat https://t.co/arB1OSEhPX |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A3. Ooh, I like this one! My blog isn't up, so I don’t feel all of the potential gains. I can say as I’m drafting posts (and writing now) I feel an emotional release, increased confidence, and even joy at the thought of impacting others to do the same. #WEGOHealthChat |
| Lisa Davis Budzinski @lisadbudzinski @AOEpilepsy @wegohealth Justice can spur action 😉👏👏👏 Proud of you! #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @RainyMelancoly I think this is DEFINITELY a big part of it. Just talking about that benefits all of us! And of course fatigue + cognitive impairment + spending energy on the hunt for a dx can make it really difficult to write about the experience while you're in the middle. #WEGOHealthChat |
| Alan Brewington @abrewi3010 A5 one day of the highest possible quality of life for a fellow patient, regardless of diagnosis! #WEGOHealthChat |
| Group Medical Supply @GroupMedSupply Sharing a health related story helped with emotional release and created deeper connections with those I shared it with. Sharing a vulnerable story allows us to own our health and be more confident. #WEGOHealthChat |
| Amanda G @LAlupusLady A5 if sharing my story helps one person that is huge! If by speaking and sharing my healthcare journey helps more than one person... that is BIG! I never thought @HIMSS or @PCHAlliance would want me to share but they did! I still have more stories to tell. #WEGOHealthChat |
| Lisa Davis Budzinski @lisadbudzinski A CURE! to help those with #intractablepain attain a better quality of life. To thrive, not merely survive✨ #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A4. Make a list - nothing fancy or complex. What do you want to share? What don't you want to share? Don’t pressure yourself to reveal everything in your mind or heart. Sharing your story is on your own terms. And, MOST importantly, you are not alone! #WEGOHealthChat |
| Group Medical Supply @GroupMedSupply If you're nervous to share a health story, that is okay. Everyone who once shared was nervous too. It only takes 20 seconds of courage. Type it up, think what you want to say in your head, and give yourself 20 seconds to build up the courage and don't back down. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A5. In my wildest dreams I would help find cures, leave myself & others w better care, get a talk-show to keep sharing others stories and the fun adventures of my life. I want to leave earth (when its my time) and have made an impact in the good of healthcare #WEGOHealthChat |
 | Rob Portinga @mcnee @wegohealth A4: Start by telling just one person. Someone you know, are comfortable with. Baby steps. #wegohealthchat |
| Angels Of Epilepsy, Inc.© @AOEpilepsy @wegohealth A3.) I was shocked that sharing my story, that there were other survivors and/or families with similar experiences. Which did have some of them to not be afraid to talk about it! Sharing my story has inspired many... very thankful for that. 💜 #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A5: My big dream is to transform the diagnostic experience. I want it to become common knowledge that most sick people spend years (or decades) with idiopathic symptoms before hopefully finding a diagnosis that explains what's happening. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb I want friends & family & doctors to realize that unexplained symptoms are not imagined symptoms. I want our culture to recognize that folx without a dx still deserve accommodations and empathy and patience. #WEGOHealthChat |
| Group Medical Supply @GroupMedSupply This is for A4: I apologize, I got too excited! #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach @1in20parkinsons - yes, yes, yes! #wegohealthchat |
| Group Medical Supply @GroupMedSupply @wegohealth A5: In my wildest dreams sharing my story would end the stigma around disease. Mental health, diabetes, any and all diseases because we are all human beings. The stigmas have to go in order for patients to receive the proper care and self-esteem. #WEGOHealthChat |
| Angels Of Epilepsy, Inc.© @AOEpilepsy @wegohealth A4.) My advice is to just talk! Share it as if you’re socializing with close friends on a dinner date. 🤗 The best way is to just be you & know that you CAN do it! #WEGOHealthChat |
| Julie Croner @justagoodlife RT @RonnyAllan1: |
| Social Health Network @socialhealthnet Whew, that hour went quickly! We have a few more moments, so let's begin to wrap up. Use CT to share with us any closing thoughts you have from today's chat. #wegohealthchat |
| Parkinson's Humor @YumaBev @wegohealth A5. I'd like to be able to afford to give every #Parkinsons support group a copy of my Parkinson's Humor book and I'd love to educate the medical community to stop telling Young Onset Parkinson's seeking help, that we drink too much coffee. We aren't faking it! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @bennessb: I want friends & family & doctors to realize that unexplained symptoms are not imagined symptoms. I want our culture to recognize that folx without a dx still deserve accommodations and empathy and patience. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @AOEpilepsy: @wegohealth A4.) My advice is to just talk! Share it as if you’re socializing with close friends on a dinner date. 🤗 The best way is to just be you & know that you CAN do it! #WEGOHealthChat |
| Julie Croner @justagoodlife RT @YumaBev: @wegohealth A5. I'd like to be able to afford to give every #Parkinsons support group a copy of my Parkinson's Humor book and I'd love to educate the medical community to stop telling Young Onset Parkinson's seeking help, that we drink too much coffee. We aren't faking it! #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb CT: I've been thinking a lot about what it might look like to adapt my storytelling workshops for folx with chronic illness, in order to help people share their stories in a way that feels safe. If anybody else is thinking about this, I would love to chat! #WEGOHealthChat |
| Amanda G @LAlupusLady CT Gentle nudge... Please read my bio https://t.co/uuSaccApoD and consider “endorsing” me for the #WEGOHealthAwards #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A5. Ooh, I like this question more! Truth be told, I’d like to be known in my communities. Not necessarily to be recognized, but to have a larger platform to share my story. That way I’d be able to reach so many more people, and that would be a wonderful thing. #WEGOHealthChat |
| Alan Brewington @abrewi3010 Look for opportunities like #Medx to both learn from & share your story. Patient silos are stupid, people are amazing. Finally & most importantly, we have earned right to bad days but not a bad life. #wegohealthchat |
 | Sunny Brous @sunnystrongals RT @bennessb: I want friends & family & doctors to realize that unexplained symptoms are not imagined symptoms. I want our culture to recognize that folx without a dx still deserve accommodations and empathy and patience. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle CT. Hope is True... Go, Fight (not literally but that how the cheer goes, really it means take action to make life better), win! #CheerleaderofHOPE - @BarbyIngle #WEGIHealthChat |
| Julie Croner @justagoodlife RT @abrewi3010: Look for opportunities like #Medx to both learn from & share your story. Patient silos are stupid, people are amazing. Finally & most importantly, we have earned right to bad days but not a bad life. #wegohealthchat |
| Julie Croner @justagoodlife RT @LAlupusLady: CT Gentle nudge... Please read my bio https://t.co/uuSaccApoD and consider “endorsing” me for the #WEGOHealthAwards #WEGOHealthChat |
 | Migraine Strong - Eileen @MigraineStrong1 Hi. I’m Eileen and I’m late to the party! I have migraine and migraine with brain stem aura. I’m a patient advocate and educator as well as a blogger. #WEGOHealthChat |
| Lisa Davis Budzinski @lisadbudzinski CT: Share your knowledge, it may be the 1st stepping stone for another✨ #WEGOHealthChat |
| Lisa Davis Budzinski @lisadbudzinski Everyone have a wonderful week no matter where you are ✨ #WEGOHealthChat |
| Parkinson's Humor @YumaBev @wegohealth I love that I have found a whole bunch of new bloggers to follow! Thank you @wegohealth for hosting todays #WEGOHealthChat Have a Happy Parky Day everyone! https://t.co/ORUaflXki2 |
| Parkinson's Humor @YumaBev RT @bennessb: I want friends & family & doctors to realize that unexplained symptoms are not imagined symptoms. I want our culture to recognize that folx without a dx still deserve accommodations and empathy and patience. #WEGOHealthChat |
| Amanda G @LAlupusLady CT Did you know @wegohealth is nominated for a @powerofpain #HeroOfHope award? Vote for them here https://t.co/VRvug18uRa #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach And, girl, you do a wonderful job 🙂 |
| Group Medical Supply @GroupMedSupply My first ever #WEGOHealthChat just finished and it was SO awesome! I loved reading everyone's responses and learning from others in the community. Already excited for next month! #TellYourStory |
 | International Pain Foundation® @iPainOfficial RT @LAlupusLady: CT Did you know @wegohealth is nominated for a @powerofpain #HeroOfHope award? Vote for them here https://t.co/VRvug18uRa #WEGOHealthChat |
| Social Health Network @socialhealthnet Thank you to everyone who came to #WEGOHealthChat today! So great to hear what you're up to & be apart of a great idea exchange! If you'd like to do this more often, be sure to join our private FB group, available only to Network members! https://t.co/BISsiziQl2 |
| Social Health Network @socialhealthnet Don't forget, we have #wegohealthchat the second Tuesday of every month at 1pm ET. Mark it on your calendar 📆! |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A1: As a federal health policy lobbyist, #patient #storytelling is key to getting points across. Bill numbers are important, but describing their impact on daily life and well-being helps adds dimension #WEGOHealthChat |
| Julie Croner @justagoodlife RT @LifeAccrdingLiz: A1: A1: As a federal health policy lobbyist, #patient #storytelling is key to getting points across. Bill numbers are important, but describing their impact on daily life and well-being helps adds dimension #WEGOHealthChat |
 | Must Stop MS! @MustStopMS @justagoodlife Ugh! I missed it 😔 #WEGOHealthChat |
 | Natalie Y. B. @i_Am_Natalie_B RT @AOEpilepsy: @wegohealth A3.) I was shocked that sharing my story, that there were other survivors and/or families with similar experiences. Which did have some of them to not be afraid to talk about it! Sharing my story has inspired many... very thankful for that. 💜 #WEGOHealthChat |
| Natalie Y. B. @i_Am_Natalie_B RT @AOEpilepsy: @wegohealth A1.) Having epilepsy has caused many changes in my life, some I never would imagine, BUT I did realize that I’m here for a reason. My motivation is sharing my journey and showing others that prayer, faith, & determination is a great medicine! 💜 #WEGOHealthChat |
| Migraine Strong - Eileen @MigraineStrong1 @wegohealth A3. Lots of confidence, best friends, new connections and allies in the medical community and a sense of purpose. #WEGOHealthChat |
| Migraine Strong - Eileen @MigraineStrong1 @wegohealth A5. Connections with a larger migraine population. The ability to provide people with migraine the resources to ask for the care they need even if they don’t have access to a headache specialist. Educate and empower them. #WEGOHealthChat |
#WEGOHealthChat content from Twitter.