#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 together to learn from each other and discuss topics of interest to empowered patients. |
 | The Patient Revolution @patientrev @patientchat We have a Tweetchat Q&A here, too! https://t.co/Vj7i7Pfact #patientchat |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Jamie Roger @JamieRoger8 #patientchat How i missed you so last week. Hope everyone has had a productive and wonderful week. I'm looking forward to today's discussion and all of the lovely people who join in. Jamie from CT and @SalemOaks |
 | Christina Lizaso @btrfly12 #gyncsm #patientchat - All welcome at the @BTSMchat #BTSM (Brain Tumor Social Media) this Sunday, April 7th at 9pmET for a chat on brain radiation. |
 | Cat Williams @dizzycatdesign RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come together to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat RT @patientrev: @patientchat We have a Tweetchat Q&A here, too! https://t.co/Vj7i7Pfact #patientchat |
| Patient Chat @patientchat Guest @patientrev is Kerri Sparling. Dx’d with type 1 diabetes in 1986, Kerri is on the Patient Revolution team, working towards careful and kind care. She’s also found at @sixuntilme. #patientchat |
| The Patient Revolution @patientrev My name is Kerri, usually found at @sixuntilme, and I'm a type 1 diabetes patient storyteller. Happy to be with you today! #patientchat |
| Patient Chat @patientchat You can find out more about @patientrev and their mission here: https://t.co/FCaiVYn1oS #patientchat |
| The Patient Revolution @patientrev RT @patientchat: Guest @patientrev is Kerri Sparling. Dx’d with type 1 diabetes in 1986, Kerri is on the Patient Revolution team, working towards careful and kind care. She’s also found at @sixuntilme. #patientchat |
| The Patient Revolution @patientrev RT @patientchat: You can find out more about @patientrev and their mission here: You can find out more about @patientrev and their mission here: https://t.co/FCaiVYn1oS #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat. |
 | Jack Aiello @JackMAiello Hi folks. Jack Aiello, 24yr #myeloma survivor. #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Jamie Roger @JamieRoger8 @JackMAiello Hi Jack! #patientchat |
 | Becky Brandt DegenRN @bbhomebody Hi everyone, I'm Becky from Washington state, RN, patient, & advocate #CPS #CRPS #intractablepain #patientchat @Cpnervecenter Shout out to my amazing partner @lisadbudzinski https://t.co/SbL4Dtyxng |
 | Laurie Reed @LReedptadvocate @patientchat Laurie here from deep in the heart of the still cold Midwest! Looking forwad to the conversation today! #patientchat |
| 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 and history #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: Guest @patientrev is Kerri Sparling. Dx’d with type 1 diabetes in 1986, Kerri is on the Patient Revolution team, working towards careful and kind care. She’s also found at @sixuntilme. #patientchat |
| Jamie Roger @JamieRoger8 @bbhomebody @Cpnervecenter @lisadbudzinski AMEN to the Friday celebration. Glad to see you here Becky. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/IqBQ0maGJ7 #patientchat |
 | Kevin Freiert @K_SalemOaks Kevin from CT here. Go @UCONNWBB! Can't wait to hear your stories. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @WestchesterBio https://t.co/2wg8XswYl1 |
| Inspire @InspireIsHealth Hello to #patientchat, John Novack from Inspire checking in. |
 | Ody @OdyO11 Hi, I am a patient from Europe with a disease that doctors around here think of as rare (though it's probably more likely just rarely diagnosed) #patientchat |
| Jack Aiello @JackMAiello @JamieRoger8 Hi Jamie. #patientchat |
| Jamie Roger @JamieRoger8 @LReedsbooks @patientchat Don't fret, it's cold (chilly) in CT today too. #whereareyouspring #patientchat |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/IqBQ0maGJ7 #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
 | Radha @radhachitale Hi #patientchat! I'm the Digital Editor @teaminspire. I'm co-presenting on a similar topic at #HealtheVoices19 next weekend. Extremely excited to hear from @patientrev and everyone else! #patientstories |
| Jamie Roger @JamieRoger8 @Chris_Anselmo WOOOO you made it. Did you have to sneak off and hide at work so you could join in? #patientchat |
 | Global Genes @GlobalGenes T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
 | Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| The Patient Revolution @patientrev RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
 | Carolyn Holmes @HolmesCarolyn23 RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
| The Patient Revolution @patientrev RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hi all. I'm Shereese from Maryland. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
| Patient Empowerment Network @power4patients RT @patientrev: My name is Kerri, usually found at @sixuntilme, and I'm a type 1 diabetes patient storyteller. Happy to be with you today! #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Jamie Roger @JamieRoger8 @ShereesePubHlth Fancy seeing you again today. #patientchat |
 | Marni Cartelli @Purrfectly_Rare #patientchat Hi! Marni here from Long Isand, NY. I have Complex Regional Pain Syndrome #CRPS. I am a patient & #advocate who used to work in healthcare I'm so happy to B joining ON TIME Thanks 4 the reminder @JamieRoger8! |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba I'm following you today. #patientchat |
| Ody @OdyO11 RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
 | Lauren Cox @FDWarriorLauren RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
| Jamie Roger @JamieRoger8 @Purrfectly_Rare You are very welcome Marni. This is looking like it will be a great discussion. #patientchat |
| Patient Chat @patientchat T1: How do you benefit from sharing your story? How do others benefit? #patientchat https://t.co/DbBF3QH2fU |
| Jamie Roger @JamieRoger8 @Chris_Anselmo HAHAHA That still takes effort. #patientchat |
| Becky Brandt DegenRN @bbhomebody @ShereesePubHlth Hey there Shereese 😀🖐 Happy Friday #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hey Becky! #patientchat https://t.co/1cI4iIhEOE |
 | MakeThisLookAwesome♿️ @MakeThisLookAwe RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: How do you benefit from sharing your story? How do others benefit? #patientchat https://t.co/DbBF3QH2fU |
| The Patient Revolution @patientrev RT @patientchat: T1: T1: How do you benefit from sharing your story? How do others benefit? #patientchat https://t.co/DbBF3QH2fU |
| Christina Lizaso @btrfly12 Waving Hello to #patientchat - Such an important topic. Heading out of town but hope to catch up on the transcript later. Have a lovely weekend all. |
| Kevin Freiert @K_SalemOaks T1: Each time we tell our story we process it just a little bit more. This helps us heal and come to embrace that story as part of who we are. It helps others share in our experience and embrace us too. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes https://t.co/cwnfgIF9jm |
| The Patient Revolution @patientrev T1. When I was dx'd w/type 1 diabetes in second grade, I didn't know anyone else w/this disease. Sharing my story connected me to my peers. And my health is beyond-measure-better for those connections. #patientchat - ks |
| Jamie Roger @JamieRoger8 I found peace in being able to share my story. It brought me a sense of acceptance and a realization that all I had left to do was embrace it and use it to help others. https://t.co/Hr9xlXbhvI I was actually just thinking the other day about doing an update. #patientchat |
| Patient Empowerment Network @power4patients A1: Check out "Why Your Patient Story Matters" blog from the fab @JBBC https://t.co/naQF4dt3bX #patientchat |
| The Patient Revolution @patientrev T1. I think (hope?) others benefit from my story bc it's these shared experiences that make the burden of chronic illness lighter. Peer-to-peer support matters. #patientchat - ks |
| Jack Aiello @JackMAiello T1: Sharing my story benefits me as a great reminder to never forget...even though it was 24 yrs ago. #patientchat |
| Patient Empowerment Network @power4patients RT @JackMAiello: T1: T1: Sharing my story benefits me as a great reminder to never forget...even though it was 24 yrs ago. #patientchat |
| Patient Empowerment Network @power4patients RT @patientrev: T1. I think (hope?) others benefit from my story bc it's these shared experiences that make the burden of chronic illness lighter. Peer-to-peer support matters. #patientchat - ks |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @bbhomebody #patientchat https://t.co/jzBro0WDK1 |
 | Alan Brewington @abrewi3010 A1 I become a better communicator and listener by sharing my story. Two qualities lacking in healthcare I think. #patientchat |
| Patient Chat @patientchat RT @patientrev: T1. I think (hope?) others benefit from my story bc it's these shared experiences that make the burden of chronic illness lighter. Peer-to-peer support matters. #patientchat - ks |
| Ody @OdyO11 T1: Sharing my story helps me coping. It helps me and others to understand patterns and find solutions. There is research in psychology, that understanding reduces anxiety. Understanding underlying issues and patterns is important for my self-efficacy. #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A1 I become a better communicator and listener by sharing my story. Two qualities lacking in healthcare I think. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A1 I become a better communicator and listener by sharing my story. Two qualities lacking in healthcare I think. #patientchat |
| The Patient Revolution @patientrev RT @OdyO11: T1: T1: Sharing my story helps me coping. It helps me and others to understand patterns and find solutions. There is research in psychology, that understanding reduces anxiety. Understanding underlying issues and patterns is important for my self-efficacy. #patientchat |
 | Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes me feel so small/isolated sometimes. To others it captures nuances in circumstances they might not have understood/realized previously #patientchat |
| Jamie Roger @JamieRoger8 @abrewi3010 WOOO you made it Alan. How are you feeling? Ramping yourself up to be able to return to work? #healing #patientchat |
| Christina Lizaso @btrfly12 RT @power4patients: A1: A1: Check out "Why Your Patient Story Matters" blog from the fab @JBBC https://t.co/naQF4dt3bX #patientchat |
| The Patient Revolution @patientrev SO much this. #patientchat - ks |
| Kevin Freiert @K_SalemOaks RT @RaeofSunshine79: @patientchat T1: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes me feel so small/isolated sometimes. To others it captures nuances in circumstances they might not have understood/realized previously #patientchat |
| Patient Empowerment Network @power4patients @OdyO11 "Understanding reduces anxiety" YES x100 #patientchat |
| Patient Empowerment Network @power4patients RT @RaeofSunshine79: @patientchat T1: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes me feel so small/isolated sometimes. To others it captures nuances in circumstances they might not have understood/realized previously #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
| Ody @OdyO11 T1: When I wasn't diagnosed yet,I was very thankful for others who helped me navigate the health system and receive a diagnosis. By now, I have educated myself (reading research), I have lived experience and coping mechanisms. I want to pay it forward and help others.#patientchat |
| Christina Lizaso @btrfly12 RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
| Patient Chat @patientchat @MakeThisLookAwe @teaminspire Hi there! You can join the chat by following along with the hashtag #patientchat and include it in every tweet during the next hour. Here are some tips: https://t.co/hTxvLlyETu |
| Christina Lizaso @btrfly12 RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T1 Sharing my story helps me advocate better for others. Others benefit from my experiences and my failures #patientchat |
| MakeThisLookAwesome♿️ @MakeThisLookAwe RT @patientchat: @MakeThisLookAwe @teaminspire Hi there! You can join the chat by following along with the hashtag #patientchat and include it in every tweet during the next hour. Here are some tips: https://t.co/hTxvLlyETu |
| Christina Lizaso @btrfly12 RT @patientchat: Guest @patientrev is Kerri Sparling. Dx’d with type 1 diabetes in 1986, Kerri is on the Patient Revolution team, working towards careful and kind care. She’s also found at @sixuntilme. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T1 - Sharing stories is how we learn. Sharing stories about our illness helps us to understand and to heal. And hopefully by sharing others will learn from our experiences and realize they are not alone. #patientchat |
| Jamie Roger @JamieRoger8 @ShereesePubHlth Truth. Life is easier to navigate when you have some understand or roadmap from someone who experienced those issues before you. #roadmap #support #patientchat |
| Patient Chat @patientchat RT @RaeofSunshine79: @patientchat T1: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes me feel so small/isolated sometimes. To others it captures nuances in circumstances they might not have understood/realized previously #patientchat |
| Ody @OdyO11 T1: Also, sharing my story in order to help others and to help research plays into who I am: I enjoy helping others & trying to better things. There are less opportunities to do so since my health declined, but this is something I can contribute. It gives me joy. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/NZMRSY7iWP #patientchat |
| Global Genes @GlobalGenes RT @power4patients: Why is patient storytelling important? Let's discuss today at 1pmET during the Empowered #patientchat w/special guest Kerri Sparling @patientrev https://t.co/xDecljPSx2 https://t.co/sAIY1bnQJ0 |
| Patient Empowerment Network @power4patients RT @OdyO11: T1: Also, sharing my story in order to help others and to help research plays into who I am: T1: Also, sharing my story in order to help others and to help research plays into who I am: I enjoy helping others & trying to better things. There are less opportunities to do so since my health declined, but this is something I can contribute. It gives me joy. #patientchat |
| Jamie Roger @JamieRoger8 I've actually been reading patient stories all morning as part of an upcoming project... I believe that there can be something learned from everyone. #patientchat |
 | Sommer Consulting @SommerConsults RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8 I’m doing pretty good. Pain is manageable, having trouble sleeping though. Going back to work on Monday for 20 hour weeks for awhile. How are you? #patientchat |
| Patient Chat @patientchat T2: What would you say to a fellow patient who might be unsure about sharing their story? #patientchat https://t.co/lVkdRmE6pe |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: What would you say to a fellow patient who might be unsure about sharing their story? #patientchat https://t.co/lVkdRmE6pe |
| Kevin Freiert @K_SalemOaks T1: Hearing someone else's story provides hope, strength, and a feeling of belonging. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @GlobalGenes |
| Kevin Freiert @K_SalemOaks T1: We all benefit from understanding each other's stories. Those stories are what make us human. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
| Jack Aiello @JackMAiello T1: Sharing your own story should also make you feel good about how far you have come #patientchat |
| Jamie Roger @JamieRoger8 @abrewi3010 I'm doing well. I have also been having trouble sleeping, and I don't have unbearable neck pain... I know that the sleep factor alone is trying. Glad to hear that the pain is manageable, thats a big deal! #patientchat |
| Alan Brewington @abrewi3010 A2 being vulnerable helps in healthcare. However it’s incredibly difficult to be vulnerable, sharing my story helps me develop this quality further. #patientchat |
 | Lillian Lake - Host of #SoulNestingChat @llake @ShereesePubHlth Hi Shereese! Great to see you! I hope Friday is treating you well! #patientchat |
| Kevin Freiert @K_SalemOaks T2: Read the poem The Journey by Mary Oliver. Now read it out loud. Now read it out loud to someone who loves you. Now what is your story? #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes https://t.co/d9EW98uPAv |
 | Kimberly Amelia @fireflyrn84 Hi all, hopping on late. Have missed the last few #patientchat but am going to give it a whirl today. Out of the hospital and recovering from my pneumothorax and chest tube. |
| Jamie Roger @JamieRoger8 @patientchat Share what feels right, what you are comfortable with... or don't share at all. This is YOUR story, tell it when it feels right. #patientchat |
| The Patient Revolution @patientrev T2. I totally understand any nerves abt sharing stories. It's personal health info and it can be scary to share. But more often than not, for me, talking abt diabetes helps me tackle it daily. #patientchat |
| Kevin Freiert @K_SalemOaks Glad to have you back! #patientchat |
| Marni Cartelli @Purrfectly_Rare T1.#patientchat I think pts have an inherent desire 2B heard, esp those whove been dismissed by the medical comm along the journey It can be cathartic & a release, a chance to heal. Others learn they arent alone, many of our journeys run parallel w same themes, just dif details |
| Laurie Reed @LReedptadvocate @power4patients @JBBC Thanks for the link! #patientchat |
| The Patient Revolution @patientrev T2. That said, remember that once published, forever public, so have a sense of where your boundaries might be and don't feel pressured to say more unless you want to. #patientchat |
| Laurie Reed @LReedptadvocate RT @patientrev: T1. I think (hope?) others benefit from my story bc it's these shared experiences that make the burden of chronic illness lighter. Peer-to-peer support matters. #patientchat - ks |
 | Marie Ennis-O'Connor @JBBC @patientchat A2 be mindful of how you will feel when you share something that's private and personal - it can be empowering and therapeutic but also puts you in a vulnerable place - be careful who you share it with #patientchat |
| Jack Aiello @JackMAiello T2: To the shy story-teller? Remember what it was like when you were diagnosed and heard from others previously there. Such an impact. #patientchat |
| The Patient Revolution @patientrev RT @JamieRoger8: @patientchat Share what feels right, what you are comfortable with... or don't share at all. This is YOUR story, tell it when it feels right. #patientchat |
| Cat Williams @dizzycatdesign Cat here in Charlotte, NC. Patient with cystic fibrosis, 27% lung function & 24/7 oxygen. #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 Glad you are able to join us today for a bit. Keep resting so your body can recover! #patientchat |
| The Patient Revolution @patientrev RT @JBBC: @patientchat A2 be mindful of how you will feel when you share something that's private and personal - it can be empowering and therapeutic but also puts you in a vulnerable place - be careful who you share it with #patientchat |
| Ody @OdyO11 A2: I'd tell them to make an informed decision if and how they want to share their story and to consider doing so anonymously. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T1 It releases stress, invites new information, helps us all to realize we are not alone in an otherwise isolating circumstance. #patientchat |
| Marie Ennis-O'Connor @JBBC Well said Jamie! #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8 Sleep is overrated as long as caffeine is around! 🤪 #patientchat |
| Laurie Reed @LReedptadvocate @JackMAiello And by never forgetting......? #patientchat |
| Kimberly Amelia @fireflyrn84 T1: I benefit from sharing my story because I can share lessons learned and experiences and honestly make some things less scary. Others benefit because I am making sure that I give details. If something can be less scary, then I've succeeded #patientchat |
| Cat Williams @dizzycatdesign RT @patientrev: T1. I think (hope?) others benefit from my story bc it's these shared experiences that make the burden of chronic illness lighter. Peer-to-peer support matters. #patientchat - ks |
| Jamie Roger @JamieRoger8 YASSSSSS #patientchat |
 | IFFGD @IFFGD RT @patientchat: You're invited! Join us for an "The Power of Patient Storytelling" Empowered #patientchat w/special guest Kerri Sparling @patientrev this Friday 4/5 1pmET | 10amPT https://t.co/GWBSgVljXE https://t.co/HwnRCURH9s |
| Kevin Freiert @K_SalemOaks T2: Write it out - just to yourself. Come back a week or so later and read it, critique, it, refine it. Rinse, Repeat. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes https://t.co/VDpWhoDHaW |
| The Patient Revolution @patientrev RT @K_SalemOaks: T2: T2: Write it out - just to yourself. Come back a week or so later and read it, critique, it, refine it. Rinse, Repeat. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes https://t.co/VDpWhoDHaW |
| Jamie Roger @JamieRoger8 @JBBC Thanks. #patientchat |
| Global Genes @GlobalGenes T2 Our FREE toolkit on Using Storytelling to Raise Awareness for Your #RareDisease explains why storytelling matters, provides examples of different storytelling methods & offers tips to help get started. There's a resource guide for more info https://t.co/s0pHSCt472 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake Hi everyone! I'm a current patient and a #caregiver to Type 1 #diabetic #patientchat |
| Jamie Roger @JamieRoger8 @abrewi3010 I actually don't consume caffeine. #patientchat #FunFactFriday |
| Laurie Reed @LReedptadvocate @Chris_Anselmo Don't sensor yourself too much -- you would be surprised at what others may find beneficial! #patientchat #patientadvocacy #patientexperience |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T2: Only do it when ready. Nobody owns your story but you. If it affects your mental health its not worth it. Your story matters in the grand framework of healthcare. Your story has power to make change. You might not get to see that change but people leave impacted #patientchat |
| Marie Ennis-O'Connor @JBBC A2 How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it #patientchat |
| Kimberly Amelia @fireflyrn84 @JamieRoger8 I'm propped in bed with my pillows ice pack, heating pad, stuffed penguin, and pudding. Resting up and listening to my body, which I'm notorious for not doing. This one is definitely make me listen. #patientchat |
| Cat Williams @dizzycatdesign RT @RaeofSunshine79: @patientchat T1: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes me feel so small/isolated sometimes. To others it captures nuances in circumstances they might not have understood/realized previously #patientchat |
| Marni Cartelli @Purrfectly_Rare T2 #patientchat I get it's scary. But U only have to share as much as you feel comfortable. Also make sure the people you start with to share your story, you trust. Working w the right ppl makes you feel more confident and gives you the courage to deal w the inevitable negativity |
| Alan Brewington @abrewi3010 A2 storytelling is a skill, you will get better with practice. Push yourself to be vulnerable bc that makes for quality content but don’t be so vulnerable you damage yourself. #patientchat |
| Kimberly Amelia @fireflyrn84 @abrewi3010 @JamieRoger8 good to see you Alan! #patientchat |
| Laurie Reed @LReedptadvocate RT @OdyO11: T1: T1: Sharing my story helps me coping. It helps me and others to understand patterns and find solutions. There is research in psychology, that understanding reduces anxiety. Understanding underlying issues and patterns is important for my self-efficacy. #patientchat |
| Kevin Freiert @K_SalemOaks T2: "I want to hear your story. You are important to me, so your story is too. I promise not to judge you". #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
| Laurie Reed @LReedptadvocate RT @RaeofSunshine79: @patientchat T1: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes me feel so small/isolated sometimes. To others it captures nuances in circumstances they might not have understood/realized previously #patientchat |
| Jamie Roger @JamieRoger8 @dizzycatdesign THanks for joining the group today Cat. #patientchat |
| MakeThisLookAwesome♿️ @MakeThisLookAwe Know too that you can write it as fiction (even if it's not) if you want to further protect yourself. #patientchat |
| Patient Empowerment Network @power4patients A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar condition/situation 2. Sharing your story can be very cathartic for you 3. If you have privacy concerns, sharing your story anonymously is an option #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A2 storytelling is a skill, you will get better with practice. Push yourself to be vulnerable bc that makes for quality content but don’t be so vulnerable you damage yourself. #patientchat |
| Patient Empowerment Network @power4patients RT @Purrfectly_Rare: T2 #patientchat I get it's scary. But U only have to share as much as you feel comfortable. Also make sure the people you start with to share your story, you trust. Working w the right ppl makes you feel more confident and gives you the courage to deal w the inevitable negativity |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T2 Stories are important, but in understanding how personal they are, wait for when it feels right. At the least, journal about your journey. Even if it's a sentence a day. #patientchat |
| Kimberly Amelia @fireflyrn84 T2: Sharing your story doesn't mean you have to tell everything. Only share what you are comfortable with. It may become easier and you might want to tell more later. Starting out can be intimidating, once you get involved you won't ever want to go back. #patientchat |
| Patient Empowerment Network @power4patients RT @JBBC: A2 How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it #patientchat |
| MakeThisLookAwesome♿️ @MakeThisLookAwe RT @power4patients: A2: A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar condition/situation 2. Sharing your story can be very cathartic for you 3. If you have privacy concerns, sharing your story anonymously is an option #patientchat |
| The Patient Revolution @patientrev RT @llake: @patientchat T2 Stories are important, but in understanding how personal they are, wait for when it feels right. At the least, journal about your journey. Even if it's a sentence a day. #patientchat |
| Alan Brewington @abrewi3010 A2 quality content is more important than mass produced. Quality content doesn’t have a max or min number of pages either. #patientchat |
| Patient Chat @patientchat @saratate3blog Hi Sara! Make sure to include #patientchat in your responses so everyone can see :) |
| Jamie Roger @JamieRoger8 @OdyO11 Remaining anonymous can definitely help lower the anxiety of the situation. #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat Rachel here from Alberta, Canada! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 @patientchat Hi Jamie! Great to see you! So right to advise to share when it feels right. #patientchat |
| Radha @radhachitale @OdyO11 I always wonder how important anonymity is when people consider sharing, or maybe sharing information selectively. #patientchat @patientrev |
| Patient Empowerment Network @power4patients @llake Welcome, Lillian! #patientchat |
| Cat Williams @dizzycatdesign RT @RaeofSunshine79: @patientchat T2: @patientchat T2: Only do it when ready. Nobody owns your story but you. If it affects your mental health its not worth it. Your story matters in the grand framework of healthcare. Your story has power to make change. You might not get to see that change but people leave impacted #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @RaeofSunshine79: @patientchat T2: @patientchat T2: Only do it when ready. Nobody owns your story but you. If it affects your mental health its not worth it. Your story matters in the grand framework of healthcare. Your story has power to make change. You might not get to see that change but people leave impacted #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up...https://t.co/NZMRSY7iWP #patientchat |
| Jamie Roger @JamieRoger8 @llake How are you doing Lillian? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Topic 2 (T2:) coming up...https://t.co/NZMRSY7iWP #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8 Wait WHAT!? I’ve never heard of such crazy talk before. 😂 #patientchat |
| Patient Empowerment Network @power4patients @dizzycatdesign Welcome, Cat! #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody very sore...I should have set an alarm for pain meds during the night, have been trying for 5 hours to get back on top of it. I'll nap later...#patientchat comes first, need to feel a little bit of normalcy though which is all of you!! #patientchat |
| Patient Empowerment Network @power4patients RT @JackMAiello: T2: T2: To the shy story-teller? Remember what it was like when you were diagnosed and heard from others previously there. Such an impact. #patientchat |
| Alan Brewington @abrewi3010 RT @JBBC: A2 How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it #patientchat |
| Patient Empowerment Network @power4patients RT @patientrev: T2. That said, remember that once published, forever public, so have a sense of where your boundaries might be and don't feel pressured to say more unless you want to. #patientchat |
| Patient Empowerment Network @power4patients RT @patientrev: T2. I totally understand any nerves abt sharing stories. It's personal health info and it can be scary to share. But more often than not, for me, talking abt diabetes helps me tackle it daily. #patientchat |
| Marie Ennis-O'Connor @JBBC @radhachitale @OdyO11 @patientrev It's an interesting question and it's very contextual - when we own our story it creates an opportunity to create a shared experience and trust - when we do this anoymously we lose that connection I think #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 We all need an eye-opener at some point that it is time to listen to our bodies... don't tune out that voice, wait until it starts telling you that its ready again. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 I'm doing well. I'm having some promising treatments so I am hopeful for the 1st time in 6 years. AND on vacation next week! Woohoo! Thanks for asking. #patientchat |
| Marni Cartelli @Purrfectly_Rare @K_SalemOaks @S4PM @savvy_coop @GlobalGenes So true. Different perspectives hopefully = greater empathy #patientchat |
| MakeThisLookAwesome♿️ @MakeThisLookAwe A2 Have fun with it! And don't think you have to publish straight away. What I'm writing now was 10 years in the making... |
 | John Prince @thetechofficer RT @power4patients: A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar condition/situation 2. Sharing your story can be very cathartic for you 3. If you have privacy concerns, sharing your story anonymously is an option #patientchat |
| Patient Empowerment Network @power4patients RT @JackMAiello: T1: T1: Sharing your own story should also make you feel good about how far you have come #patientchat |
| Patient Chat @patientchat T3: Has sharing your story with your doctor helped you both make decisions about your care together? #patientchat https://t.co/0vRfIrQY5L |
| Alan Brewington @abrewi3010 @fireflyrn84 @JamieRoger8 Thank you! Hope you are doing as well as can be Kimberly!!! #patientchat |
| Patient Empowerment Network @power4patients RT @GlobalGenes: T2 Our FREE toolkit on Using Storytelling to Raise Awareness for Your #RareDisease explains why storytelling matters, provides examples of different storytelling methods & offers tips to help get started. There's a resource guide for more info https://t.co/s0pHSCt472 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @bbhomebody @Cpnervecenter @lisadbudzinski Hi Becky from Washington state! Great to connect with you today. #patientchat |
| Patient Empowerment Network @power4patients RT @JBBC: @radhachitale @OdyO11 @patientrev It's an interesting question and it's very contextual - when we own our story it creates an opportunity to create a shared experience and trust - when we do this anoymously we lose that connection I think #patientchat |
| Alan Brewington @abrewi3010 RT @power4patients: A2: A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar condition/situation 2. Sharing your story can be very cathartic for you 3. If you have privacy concerns, sharing your story anonymously is an option #patientchat |
| Jamie Roger @JamieRoger8 @abrewi3010 Haha, I mean I tend to enjoy an occasional coffee... like the last one I had was probably in El Salvador in February (only because of how fresh and delicious they are)and before that maybe November haha #patientchat |
| The Patient Revolution @patientrev T3. ABSOLUTELY. Being honest w/my doc gives them the context and real info they need to help me make changes, etc. Without the context of my life, my disease is in a vacuum. #patientchat - ks |
| Patient Empowerment Network @power4patients RT @fireflyrn84: T2: T2: Sharing your story doesn't mean you have to tell everything. Only share what you are comfortable with. It may become easier and you might want to tell more later. Starting out can be intimidating, once you get involved you won't ever want to go back. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T2 As alone and scared as you may feel, there are others that feel the same way. By sharing your story, you will realize you are not alone, and you will learn from the experiences of others. There is strength in shared experiences. #patientchat |
| Radha @radhachitale @MakeThisLookAwe Yes! I feel like fiction or other #creativewriting or creative practice is a great way to share a personal story in a way that feels right/comfortable. Gives a bit of distance and room for perspective. #patientchat |
| Jamie Roger @JamieRoger8 @llake So good to hear that you are hopeful again! and ENJOY your vacation lady, you deserve it!!! #patientchat |
| Kimberly Amelia @fireflyrn84 @JamieRoger8 I've had a lot of eye openers lately; we were in a car accident the end of January, a week later I was in the hospital with pneumonia and lung contusions and have been on home oxygen since then. Taking it a day at a time. That's all we can do #patientchat |
| MakeThisLookAwesome♿️ @MakeThisLookAwe A3: Absolutely. The story is more powerful than a list of symptoms. Anyone can Google. Intimate details speak #truth. #patientchat |
| Alan Brewington @abrewi3010 A2 sharing your story doesn’t just mean talking about the bad. Share the positive, it’s part of your story and a major part of advocacy too. #patientchat |
| Kevin Freiert @K_SalemOaks T3: 20 years after she diagnosed me with cancer and pushed me to the next specialist, I met that doctor again. When I told her my story, she nearly melted. Most of her patients aren't as blessed. She would clear her calendar just to chat. #patientchat #pinksocks |
| MakeThisLookAwesome♿️ @MakeThisLookAwe RT @radhachitale: @MakeThisLookAwe Yes! I feel like fiction or other #creativewriting or creative practice is a great way to share a personal story in a way that feels right/comfortable. Gives a bit of distance and room for perspective. #patientchat |
| Kimberly Amelia @fireflyrn84 @K_SalemOaks It's good to be back even if it's from bed :) #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 Just keep going at that pace then... Glad to hear though that you are on the mend enough to join us today. #patientchat #selfcare |
 | Your GPS Doc, LLC @yourgpsdoc Sorry I’m late! I’m Nicole Rochester, physician, former caregiver to my dad, CEO of @yourgpsdoc and professional patient and family caregiver advocate. Hi everyone! #patientchat |
| Patient Empowerment Network @power4patients @fireflyrn84 "Sharing your story doesn't mean you have to tell everything" Well said, Kim. I'm definitely an "over-sharer" so this is a good reminder #patientchat |
| Kevin Freiert @K_SalemOaks T3/2: She was about to retire and my story helped her get comfortable with it. As a result, my treatment improved because she really knew me and cared more. We connected. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
| Jack Aiello @JackMAiello T3: Sharing story with doc? My docs & nurse practitioner are part of my story, which they know well. Just last week I shared a stage with my NP sharing my story with APP’s (NP’s, PA’s, Interns). #patientchat |
| Radha @radhachitale @JBBC @OdyO11 @patientrev Interesting. Maybe it's part of a spectrum? And people move along that spectrum depending on where they are in their health/life/relationships. #patientchat |
| Kimberly Amelia @fireflyrn84 @GlobalGenes I would love to get more information from you. I have multiple #rarediseases and would love to connect! #patientchat |
| Patient Empowerment Network @power4patients RT @LReedsbooks: @patientchat T2 As alone and scared as you may feel, there are others that feel the same way. By sharing your story, you will realize you are not alone, and you will learn from the experiences of others. There is strength in shared experiences. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: Has sharing your story with your doctor helped you both make decisions about your care together? #patientchat https://t.co/0vRfIrQY5L |
| Radha @radhachitale RT @K_SalemOaks: T2: T2: "I want to hear your story. You are important to me, so your story is too. I promise not to judge you". #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
| Patient Empowerment Network @power4patients RT @JackMAiello: T3: T3: Sharing story with doc? My docs & nurse practitioner are part of my story, which they know well. Just last week I shared a stage with my NP sharing my story with APP’s (NP’s, PA’s, Interns). #patientchat |
| Kimberly Amelia @fireflyrn84 I completely agree. Many times what we may see as oversharing is actually exactly what others needed! #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T3: Patient stories are critical to building a strong doctor-patient relationship and to receiving appropriate therapy. We need to make time for this in the exam room. #patientchat |
| Alan Brewington @abrewi3010 @JamieRoger8 Very impressive! I might have a little caffeine problem...like I don’t have any right now. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 Thank you very much. Just not see snow for 7 days will be marvelous! 😊We're headed to the Blue Ridge mountains then Charlotte. It should be relaxing, healing, and imbibing in great food. #patientchat |
| The Patient Revolution @patientrev RT @yourgpsdoc: T3: T3: Patient stories are critical to building a strong doctor-patient relationship and to receiving appropriate therapy. We need to make time for this in the exam room. #patientchat |
| MakeThisLookAwesome♿️ @MakeThisLookAwe RT @yourgpsdoc: T3: T3: Patient stories are critical to building a strong doctor-patient relationship and to receiving appropriate therapy. We need to make time for this in the exam room. #patientchat |
| MakeThisLookAwesome♿️ @MakeThisLookAwe RT @fireflyrn84: I completely agree. Many times what we may see as oversharing is actually exactly what others needed! #patientchat |
| Marni Cartelli @Purrfectly_Rare @abrewi3010 @power4patients LOVE this advice! #patientchat |
| Jamie Roger @JamieRoger8 RT @K_SalemOaks: T3: T3: 20 years after she diagnosed me with cancer and pushed me to the next specialist, I met that doctor again. When I told her my story, she nearly melted. Most of her patients aren't as blessed. She would clear her calendar just to chat. #patientchat #pinksocks |
| Ody @OdyO11 T3: My story, my experiences in healthcare, influence my health decisions and my reactions to suggestions. It is important that doctors understand my story in order to avoid misunderstandings. E.g. the strong opinions I have about the importance of differentiation. #patientchat |
| Jamie Roger @JamieRoger8 @yourgpsdoc Hey Nicole, Good to see you. #patientchat |
 | Sakinah Kaiser (She/Her) @themuslimhippie RT @K_SalemOaks: T2: T2: "I want to hear your story. You are important to me, so your story is too. I promise not to judge you". #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
| The Patient Revolution @patientrev RT @K_SalemOaks: T3: T3: 20 years after she diagnosed me with cancer and pushed me to the next specialist, I met that doctor again. When I told her my story, she nearly melted. Most of her patients aren't as blessed. She would clear her calendar just to chat. #patientchat #pinksocks |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T3 It’s not so much about sharing my story for me but learning to be vulnerable and at times super honest about where I’m at. That’s uncomfortable and super challenging to get to that point but when you do it makes finding a care trajectory so much easier #patientchat |
| Inspire @InspireIsHealth RT @OdyO11: T3: T3: My story, my experiences in healthcare, influence my health decisions and my reactions to suggestions. It is important that doctors understand my story in order to avoid misunderstandings. E.g. the strong opinions I have about the importance of differentiation. #patientchat |
| Kimberly Amelia @fireflyrn84 @abrewi3010 @JamieRoger8 Aww, thanks, Alan! Taking it a step at a time. #patientchat |
| Alan Brewington @abrewi3010 A3 by sharing my story I have created a “we” approach vs just a “doc” approach with all of my doctors. #patientchat |
| Patient Empowerment Network @power4patients A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.co/EF2HUctG7i #patientchat |
| The Patient Revolution @patientrev RT @power4patients: A3: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.co/EF2HUctG7i #patientchat |
| Patient Empowerment Network @power4patients RT @OdyO11: T3: T3: My story, my experiences in healthcare, influence my health decisions and my reactions to suggestions. It is important that doctors understand my story in order to avoid misunderstandings. E.g. the strong opinions I have about the importance of differentiation. #patientchat |
| Jamie Roger @JamieRoger8 @llake OOOOO that will be beautifuL! Enjoy. #patientchat #vacation #selfcare #relax #recharge |
| Kimberly Amelia @fireflyrn84 T3: Since I worked ICU with my doctor before I got sick, we already had a good relationship and have been able to work together to try to find what works best. #patientchat |
| Patient Chat @patientchat T4: Where can patients tell their stories? How can/do you share your patient story? #patientchat https://t.co/1eB1uTeRr6 |
| Marie Ennis-O'Connor @JBBC @radhachitale @OdyO11 @patientrev You're so right Radha - I actually started off anonymously sharing my story but when I saw others could own their stories, it gave me the courage to own mine and that's when something radically shifted for me #patientchat |
| Kimberly Amelia @fireflyrn84 @JamieRoger8 I all of a sudden realized it was Friday. I thought I was doing good to realize what day on the week it was ;) #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A3 by sharing my story I have created a “we” approach vs just a “doc” approach with all of my doctors. #patientchat |
| Inspire @InspireIsHealth RT @power4patients: A3: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.co/EF2HUctG7i #patientchat |
| Patient Empowerment Network @power4patients RT @JBBC: @radhachitale @OdyO11 @patientrev You're so right Radha - I actually started off anonymously sharing my story but when I saw others could own their stories, it gave me the courage to own mine and that's when something radically shifted for me #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: Where can patients tell their stories? How can/do you share your patient story? #patientchat https://t.co/1eB1uTeRr6 |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T3 With my new doctor, yes. In fact, she diagnosed me with PTSD following the retelling of my story. I hadn't thought about it that way before. Labeling it was freeing and healing. #patientchat |
 | Richard Kreis @kreisr1 RT @patientchat: T2: T2: What would you say to a fellow patient who might be unsure about sharing their story? #patientchat https://t.co/lVkdRmE6pe |
| Sakinah Kaiser (She/Her) @themuslimhippie RT @power4patients: A3: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.co/EF2HUctG7i #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T1: T1: How do you benefit from sharing your story? How do others benefit? #patientchat https://t.co/DbBF3QH2fU |
| Richard Kreis @kreisr1 RT @patientchat: T3: T3: Has sharing your story with your doctor helped you both make decisions about your care together? #patientchat https://t.co/0vRfIrQY5L |
| Alan Brewington @abrewi3010 RT @power4patients: A3: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.co/EF2HUctG7i #patientchat |
| Richard Kreis @kreisr1 RT @abrewi3010: A1 I become a better communicator and listener by sharing my story. Two qualities lacking in healthcare I think. #patientchat |
| Richard Kreis @kreisr1 RT @patientrev: T1. I think (hope?) others benefit from my story bc it's these shared experiences that make the burden of chronic illness lighter. Peer-to-peer support matters. #patientchat - ks |
| Richard Kreis @kreisr1 RT @patientchat: Guest @patientrev is Kerri Sparling. Dx’d with type 1 diabetes in 1986, Kerri is on the Patient Revolution team, working towards careful and kind care. She’s also found at @sixuntilme. #patientchat |
| Kimberly Amelia @fireflyrn84 @JamieRoger8 You are so sweet and caring, Jamie! I love it. Keep being you, it matters a lot and makes a world of difference <3 #patientchat |
| The Patient Revolution @patientrev T4. SO MANY PLACES! I've shared my personal diabetes story at https://t.co/duZAPrktHf for 14 yrs. Over at @patientrev, we have a story library where folks can share: https://t.co/YxjyNrjhmS #patientchat - ks |
| Your GPS Doc, LLC @yourgpsdoc @JamieRoger8 Great to see you too, Jamie! #patientchat |
| Radha @radhachitale Related, wondering what kinds of tools people/docs use to facilitate such sharing? Thinking about the neat, anthropological #dataviz charts @katiemccurdy @pictalhealth makes! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @RaeofSunshine79 @patientchat Learning that being vulnerable is an okay feeling is huge! I'm so glad you are having success with your journey. #patientchat |
| The Patient Revolution @patientrev RT @radhachitale: Related, wondering what kinds of tools people/docs use to facilitate such sharing? Thinking about the neat, anthropological #dataviz charts @katiemccurdy @pictalhealth makes! #patientchat |
| Kevin Freiert @K_SalemOaks T4: I teach Sunday School for teens. My story is an important part of my teaching. God's plan is bigger than me or my doctor, or even my insurance company. https://t.co/EriSlmj06P #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes https://t.co/obxlrFEnbo |
| Jamie Roger @JamieRoger8 I shared mine online on @Medium but I also share it in tweetchats and whenever I am asked about it at this point. I am over letting the stigma of #miscarriage #fibroids and #pregnancy get in the way of me embracing my story #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat. |
| Richard Kreis @kreisr1 RT @RaeofSunshine79: @patientchat T1: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes me feel so small/isolated sometimes. To others it captures nuances in circumstances they might not have understood/realized previously #patientchat |
| Richard Kreis @kreisr1 RT @abrewi3010: A2 sharing your story doesn’t just mean talking about the bad. Share the positive, it’s part of your story and a major part of advocacy too. #patientchat |
| Richard Kreis @kreisr1 RT @btrfly12: Waving Hello to #patientchat - Such an important topic. Heading out of town but hope to catch up on the transcript later. Have a lovely weekend all. |
| Richard Kreis @kreisr1 RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come together to learn from each other and discuss topics of interest to empowered patients. |
| Kevin Freiert @K_SalemOaks @S4PM @savvy_coop @GlobalGenes T4/2 Professionally, while working in pharma, my story gave me "creds" to challenge our thinking. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
| Richard Kreis @kreisr1 RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Empowerment Network @power4patients A4: If and when you're ready to share your story, we're here to help you! Reach out to us and we'll help you on your own terms: https://t.co/4UVDNHNM63 #patientchat |
| Jack Aiello @JackMAiello T4: Where to share stories? Advocacy orgs, pharma companies, research advocacy networks, cancer clinics have all provided me with opportunities to share. #patientchat |
| Alan Brewington @abrewi3010 @bbhomebody @JamieRoger8 Hi Becky 👋🖖 #patientchat |
| Kevin Freiert @K_SalemOaks @S4PM @savvy_coop @GlobalGenes T4/3 Now, my story helps me connect with patients and caregivers. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
| Jamie Roger @JamieRoger8 @fireflyrn84 I mean, I'm not currently in recovery and have that same issue all the time when you #workfromhome it's easy ot lose track. #patientchat |
| Marni Cartelli @Purrfectly_Rare T3 #patientchat My Drs & I make every decision about care 2gether. I dont hide anything from them or selectively tell them information (like if I dont follow instructions) Yes we disagree sometimes but there is 100% trust bc we all can admit if we were wrong |
| Laurie Reed @LReedptadvocate T3 - Interesting question. In my experience, do doctors ask about your story? And do they have, or take, the time to listen? Sharing your story with a physician could potentially be very powerful and yes, it would impact decisions regarding care. #patientchat |
| Patient Empowerment Network @power4patients RT @JackMAiello: T4: T4: Where to share stories? Advocacy orgs, pharma companies, research advocacy networks, cancer clinics have all provided me with opportunities to share. #patientchat |
| The Patient Revolution @patientrev @radhachitale @katiemccurdy @pictalhealth We had the pleasure of featuring @katiemccurdy and @pictalhealth a few months ago! https://t.co/EQy4IjVu6G #patientchat - ks |
| Marie Ennis-O'Connor @JBBC RT @power4patients: A4: A4: If and when you're ready to share your story, we're here to help you! Reach out to us and we'll help you on your own terms: https://t.co/4UVDNHNM63 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientrev: T4. SO MANY PLACES! I've shared my personal diabetes story at https://t.co/duZAPrktHf for 14 yrs. Over at @patientrev, we have a story library where folks can share: https://t.co/YxjyNrjhmS #patientchat - ks |
| Patient Chat @patientchat RT @power4patients: A4: A4: If and when you're ready to share your story, we're here to help you! Reach out to us and we'll help you on your own terms: https://t.co/4UVDNHNM63 #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 Aww thank you. Just trying to share a bit of #compassion and #love with with world. WE all deserve #kindness and we all deserve to know we are appreciated and valued. #patientchat |
| Inspire @InspireIsHealth RT @Purrfectly_Rare: T3 #patientchat My Drs & I make every decision about care 2gether. I dont hide anything from them or selectively tell them information (like if I dont follow instructions) Yes we disagree sometimes but there is 100% trust bc we all can admit if we were wrong |
| Patient Empowerment Network @power4patients RT @Purrfectly_Rare: T3 #patientchat My Drs & I make every decision about care 2gether. I dont hide anything from them or selectively tell them information (like if I dont follow instructions) Yes we disagree sometimes but there is 100% trust bc we all can admit if we were wrong |
| Lillian Lake - Host of #SoulNestingChat @llake RT @JackMAiello: T4: T4: Where to share stories? Advocacy orgs, pharma companies, research advocacy networks, cancer clinics have all provided me with opportunities to share. #patientchat |
| Alan Brewington @abrewi3010 A4 tell your story in whatever medium captures your voice the best. That’s the key. My story plus my voice equals the best possible quality content #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T4: At home, family gatherings, in healthcare settings, at church, in school, on social media...wherever they feel comfortable and others can benefit. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @power4patients: A4: A4: If and when you're ready to share your story, we're here to help you! Reach out to us and we'll help you on your own terms: https://t.co/4UVDNHNM63 #patientchat |
| Marie Ennis-O'Connor @JBBC @LReedsbooks It's a very powerful therapeutic intervention in and of itself but in my experience most docs don't take the time to do this #patientchat |
| Radha @radhachitale @JBBC @OdyO11 @patientrev Right?! Some people are jump inners and some people are toe dippers and some people do both, depending. #veryscientificterminology #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T4: T4: Where can patients tell their stories? How can/do you share your patient story? #patientchat https://t.co/1eB1uTeRr6 |
| Richard Kreis @kreisr1 RT @abrewi3010: A2 storytelling is a skill, you will get better with practice. Push yourself to be vulnerable bc that makes for quality content but don’t be so vulnerable you damage yourself. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @LReedsbooks: T3 - Interesting question. In my experience, do doctors ask about your story? And do they have, or take, the time to listen? Sharing your story with a physician could potentially be very powerful and yes, it would impact decisions regarding care. #patientchat |
| The Patient Revolution @patientrev @radhachitale @JBBC @OdyO11 I love the term "jump inners." #patientchat - ks |
| Alan Brewington @abrewi3010 RT @JamieRoger8: I shared mine online on @Medium but I also share it in tweetchats and whenever I am asked about it at this point. I am over letting the stigma of #miscarriage #fibroids and #pregnancy get in the way of me embracing my story #patientchat |
| Patient Empowerment Network @power4patients RT @yourgpsdoc: T4: T4: At home, family gatherings, in healthcare settings, at church, in school, on social media...wherever they feel comfortable and others can benefit. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A4 tell your story in whatever medium captures your voice the best. That’s the key. My story plus my voice equals the best possible quality content #patientchat |
| Kimberly Amelia @fireflyrn84 @CitizenHealthio Thank you! You are all amazing, thanks for the well wishes <3 #patientchat |
| Richard Kreis @kreisr1 RT @MakeThisLookAwe: A3: A3: Absolutely. The story is more powerful than a list of symptoms. Anyone can Google. Intimate details speak #truth. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA |
| Alan Brewington @abrewi3010 RT @power4patients: A4: A4: If and when you're ready to share your story, we're here to help you! Reach out to us and we'll help you on your own terms: https://t.co/4UVDNHNM63 #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Learn more about the Empowered #patientchat series and how to participate here: Learn more about the Empowered #patientchat series and how to participate here: https://t.co/IqBQ0maGJ7 |
| Your GPS Doc, LLC @yourgpsdoc @LReedsbooks We certainly need to ask more. Time is always an issue but I am advocating for a #90SecondEncounter where docs spend 90 seconds of every visit genuinely connecting with patients. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @Purrfectly_Rare I LOVE this! #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Here’s some handy articles on participating in tweet chats: Here’s some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #patientchat |
| Jamie Roger @JamieRoger8 @radhachitale @JBBC @OdyO11 @patientrev Love this terminology. It always helps to paint a picture with your words. #storytelling #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @Purrfectly_Rare: T3 #patientchat My Drs & I make every decision about care 2gether. I dont hide anything from them or selectively tell them information (like if I dont follow instructions) Yes we disagree sometimes but there is 100% trust bc we all can admit if we were wrong |
| Richard Kreis @kreisr1 RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/IqBQ0maGJ7 #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Topic 2 (T2:) coming up...https://t.co/NZMRSY7iWP #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: You can find out more about @patientrev and their mission here: You can find out more about @patientrev and their mission here: https://t.co/FCaiVYn1oS #patientchat |
| Global Genes @GlobalGenes T4 Social media can be utilized to highlight patient & caregiver stories. Our toolkit on How to Promote Your #RareDisease Story through Social Media offers tips on setting goals & maximizing impact by tailoring content to specific platforms https://t.co/JnRxgn9lnk #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: You're invited! Join us for an "The Power of Patient Storytelling" Empowered #patientchat w/special guest Kerri Sparling @patientrev today at 1pmET | 10amPT https://t.co/T6ihPQyNhr https://t.co/jdtOmHEMHi |
| Your GPS Doc, LLC @yourgpsdoc RT @power4patients: A4: A4: If and when you're ready to share your story, we're here to help you! Reach out to us and we'll help you on your own terms: https://t.co/4UVDNHNM63 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: A4 tell your story in whatever medium captures your voice the best. That’s the key. My story plus my voice equals the best possible quality content #patientchat |
| Inspire @InspireIsHealth And here's one great example from @Chris_Anselmo himself -- https://t.co/ZDOKSZ0QVQ. #patientchat |
| Richard Kreis @kreisr1 RT @abrewi3010: A4 tell your story in whatever medium captures your voice the best. That’s the key. My story plus my voice equals the best possible quality content #patientchat |
| Richard Kreis @kreisr1 RT @Purrfectly_Rare: T3 #patientchat My Drs & I make every decision about care 2gether. I dont hide anything from them or selectively tell them information (like if I dont follow instructions) Yes we disagree sometimes but there is 100% trust bc we all can admit if we were wrong |
| Ody @OdyO11 T4: Personally, I appreciate anonymous online discussion boards independent of Social Media. When I share my story, I try to make sure to differentiate: What is my own experience, how did I come to my conclusions? #patientchat |
| Richard Kreis @kreisr1 RT @JackMAiello: T1: T1: Sharing my story benefits me as a great reminder to never forget...even though it was 24 yrs ago. #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T4: I moderate a Facebook group for engaging stakeholders and researchers in the same space. Local advisory councils are always needing ppl. Blogging. Conferences. In mentorship capacity as a volunteer for organizations or in hospital. #patientchat |
| Richard Kreis @kreisr1 RT @JamieRoger8: I shared mine online on @Medium but I also share it in tweetchats and whenever I am asked about it at this point. I am over letting the stigma of #miscarriage #fibroids and #pregnancy get in the way of me embracing my story #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up...https://t.co/NZMRSY7iWP #patientchat |
| Marie Ennis-O'Connor @JBBC @GlobalGenes love your toolkit - I mentioned it here https://t.co/7zZbEhXrfM and recommend it often #patientchat |
| Kimberly Amelia @fireflyrn84 T4: Patients can start telling their stories just on facebook, to friends and family. Eventually they may want to venture into a blog so that they can continue the dialogue. When I started my blog it was on a whim and now I have over 2000 people following #patientchat |
| Richard Kreis @kreisr1 RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
| Patient Chat @patientchat T5: What words of caution would you have for people thinking about sharing their story? #patientchat https://t.co/9tAhmBhuNX |
| Richard Kreis @kreisr1 RT @JackMAiello: T2: T2: To the shy story-teller? Remember what it was like when you were diagnosed and heard from others previously there. Such an impact. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @GlobalGenes: T4 Social media can be utilized to highlight patient & caregiver stories. Our toolkit on How to Promote Your #RareDisease Story through Social Media offers tips on setting goals & maximizing impact by tailoring content to specific platforms https://t.co/JnRxgn9lnk #patientchat |
| Richard Kreis @kreisr1 RT @ShereesePubHlth: T1 Sharing my story helps me advocate better for others. Others benefit from my experiences and my failures #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Topic 5 (T5:) coming up...https://t.co/NZMRSY7iWP #patientchat |
| Kevin Freiert @K_SalemOaks T5: It is not a competition! You don't need to have a better story or be a better storyteller. Just be the genuine you. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes |
 | Chris Anselmo @Chris_Anselmo @teaminspire Ah yes, that was a good one. My classmates never let me live down that photo shoot...#patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @llake @patientchat Thanks! In a perfect world I’d love to see self-advocacy studied in terms of what creates strong and healthy conversations ❤️ #patientchat |
| Richard Kreis @kreisr1 RT @fireflyrn84: T2: T2: Sharing your story doesn't mean you have to tell everything. Only share what you are comfortable with. It may become easier and you might want to tell more later. Starting out can be intimidating, once you get involved you won't ever want to go back. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: What words of caution would you have for people thinking about sharing their story? #patientchat https://t.co/9tAhmBhuNX |
 | Barby Ingle Official @BarbyIngle T1: Sharing my story helps me process the situation I am in, making it more of a life lesson than a 'what happened to me' or 'poor me' or even 'yah me!' and others benefit because they then know they are not alone when they go through a similar experience. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @LReedsbooks Good point. I have a new Ob/GYN (my previous gem retired 😒) and she didn't ask me anything about my medical history. However, she tested me for HPV without discussing it w/me. It was a physical so I'll be on a quest to replace her. No trust. #patientchat |
| Patient Empowerment Network @power4patients RT @JBBC: @GlobalGenes love your toolkit - I mentioned it here https://t.co/7zZbEhXrfM and recommend it often #patientchat |
| The Patient Revolution @patientrev T5. Words of caution? To protect your personal info - if you think disclosing your health info will impede work, etc. then share anonymously. And remember that it's not about the # of followers but the quality of your interactions. Every story matters! #patientchat - ks |
| Patient Empowerment Network @power4patients RT @RaeofSunshine79: @patientchat T4: @patientchat T4: I moderate a Facebook group for engaging stakeholders and researchers in the same space. Local advisory councils are always needing ppl. Blogging. Conferences. In mentorship capacity as a volunteer for organizations or in hospital. #patientchat |
| Kimberly Amelia @fireflyrn84 For me the writing is very therapeutic. It's calming and healing at the same time. It is my own form of therapy and is something that I treasure. #patientchat |
| Marni Cartelli @Purrfectly_Rare @Chris_Anselmo It was my dr who said 2 me "U need to face UR arms don't work, your days are over in the OR. So, what's next"? Just so matter of fact. It was what I needed when I wasnt moving on...it was the kick in the pants. It got me back in school and moved me forward #patientchat |
| Jamie Roger @JamieRoger8 Take your time. Your story is powerful to others but also to yourself. Only embrace the opportunity to share when you know that you are ready to be that vulnerable and open to your audience. #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp @patientchat A2: JUST DO IT! Find what works for you and what you’re comfortable with and jump in! #PatientChat #pten #RareDisease |
| Kevin Freiert @K_SalemOaks T5: Know where you are sharing and be sure it is safe. Our stories will leave us vulnerable - so take care to manage the risk - avoid it or mitigate it. #patientchat #patexpsym #pinksocks #HCLDR @S4PM @Savvy_Coop @GlobalGenes https://t.co/Ry4tTDuab1 |
| Richard Kreis @kreisr1 RT @OdyO11: T3: T3: My story, my experiences in healthcare, influence my health decisions and my reactions to suggestions. It is important that doctors understand my story in order to avoid misunderstandings. E.g. the strong opinions I have about the importance of differentiation. #patientchat |
| Kimberly Amelia @fireflyrn84 @JamieRoger8 Keep it up girl!! It's appreciated more than you could ever know. Keep being unabashedly...you #patientchat |
| Richard Kreis @kreisr1 RT @OdyO11: T1: Also, sharing my story in order to help others and to help research plays into who I am: T1: Also, sharing my story in order to help others and to help research plays into who I am: I enjoy helping others & trying to better things. There are less opportunities to do so since my health declined, but this is something I can contribute. It gives me joy. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T5: Don’t share until you’re ready and make sure you are in a safe environment with people whose intent is not to exploit you. Privacy is always a concern as well, but I think the benefits of helping others outweigh the risks. #patientchat |
| Kevin Freiert @K_SalemOaks CT - I need to run, so I am breaking protocol. Have a great weekend everyone. IT was a marveleous chat. #patientchat |
| Jack Aiello @JackMAiello T5: Words of caution? Remind listeners that their own experiences may be quite different from your own. #patientchat |
| Jamie Roger @JamieRoger8 @llake @LReedsbooks I feel like this category of doctors are the hardest to find gems in... good luck on your endeavor, I am on the same journey. #patientchat |
| Sakinah Kaiser (She/Her) @themuslimhippie RT @BarbyIngle: T1: T1: Sharing my story helps me process the situation I am in, making it more of a life lesson than a 'what happened to me' or 'poor me' or even 'yah me!' and others benefit because they then know they are not alone when they go through a similar experience. #patientchat |
| The Patient Revolution @patientrev @K_SalemOaks Thanks for sharing, Kevin! Loved your insight. #patientchat - ks |
| The Patient Revolution @patientrev RT @JackMAiello: T5: T5: Words of caution? Remind listeners that their own experiences may be quite different from your own. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @LReedsbooks T3 My husband's new endocrinologist asked detailed questions about his health hx and he genuinely listened and heard. It makes a huge difference in care outcomes #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: T5: T5: What words of caution would you have for people thinking about sharing their story? #patientchat https://t.co/9tAhmBhuNX |
| Richard Kreis @kreisr1 RT @BarbyIngle: T1: T1: Sharing my story helps me process the situation I am in, making it more of a life lesson than a 'what happened to me' or 'poor me' or even 'yah me!' and others benefit because they then know they are not alone when they go through a similar experience. #patientchat |
| Richard Kreis @kreisr1 RT @abrewi3010: A2 being vulnerable helps in healthcare. However it’s incredibly difficult to be vulnerable, sharing my story helps me develop this quality further. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 @LReedsbooks You would think it would be fairly easy - especially woman to woman. Not sure why that's not the case. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @JamieRoger8: Take your time. Your story is powerful to others but also to yourself. Only embrace the opportunity to share when you know that you are ready to be that vulnerable and open to your audience. #patientchat |
| The Patient Revolution @patientrev @llake @LReedsbooks (Jumping in to say hi and thanks for sharing. I've had type 1 diabetes since 1986. Community makes such a big difference!) #patientchat - ks |
 | Lisa 🌲 Chau || Clover Canal 🍀💦 @Lisa03755 RT @thetechofficer: RT @power4patients: A2: RT @power4patients: A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar condition/situation 2. Sharing your story can be very cathartic for you 3. If you have privacy concerns, sharing your story anonymously is an option #patientchat |
| Patient Empowerment Network @power4patients A5: Tell your story on your own terms. Whatever, whenever and where ever that means to you as an individual. You are SO MUCH MORE more than your illness so it's a part but by no means all of your story. #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 I will. #patientchat https://t.co/CdrSDRDNuV |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @llake Hi Lilian. Are you looking forward to a great weekend or looking back at an awesome week? #patientchat https://t.co/Zf2n2Ucfdt |
| Patient Empowerment Network @power4patients RT @JackMAiello: T5: T5: Words of caution? Remind listeners that their own experiences may be quite different from your own. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T5: T5: What words of caution would you have for people thinking about sharing their story? #patientchat https://t.co/9tAhmBhuNX |
| Your GPS Doc, LLC @yourgpsdoc @llake @LReedsbooks That’s wonderful! There are still good apples in the bunch. #patientchat |
| Radha @radhachitale @Purrfectly_Rare @Chris_Anselmo Awesome, reminds that it's not bad to share your needs/goals with people who want to help you. #patientchat |
| Richard Kreis @kreisr1 T1: I’ve been dealing with my chronic pain for 27yrs, helped write three books on Caregiving Tips, involved with multiple sites. If I can help one person find an easier way to help themselves or their loved one it’s worth the effort. #patientchat |
| Richard Kreis @kreisr1 RT @power4patients: A5: A5: Tell your story on your own terms. Whatever, whenever and where ever that means to you as an individual. You are SO MUCH MORE more than your illness so it's a part but by no means all of your story. #patientchat |
| Alan Brewington @abrewi3010 A5 trolls, like death and taxes, are a guarantee in social media. You won’t win everyone’s heart and soul. That said, trolls are a good indicator that your message is getting out. #patientchat |
| Richard Kreis @kreisr1 RT @JackMAiello: T5: T5: Words of caution? Remind listeners that their own experiences may be quite different from your own. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @power4patients: A5: A5: Tell your story on your own terms. Whatever, whenever and where ever that means to you as an individual. You are SO MUCH MORE more than your illness so it's a part but by no means all of your story. #patientchat |
| Richard Kreis @kreisr1 RT @patientrev: T2. That said, remember that once published, forever public, so have a sense of where your boundaries might be and don't feel pressured to say more unless you want to. #patientchat |
| Barby Ingle Official @BarbyIngle T2. Sharing your story can help you & others Only share what UR comfortable sharing I wrote about sharing UR story as a PT advocate: https://t.co/xuh1dcatcs I have also written about this n From Wheels to Heals book when it comes 2 employment & family/friends shares #patientchat |
| John Prince @thetechofficer RT @power4patients: RT @JackMAiello: T5: Words of caution? Remind listeners that their own experiences may be quite different from your own. #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody Great point, Becky! I've found a lot of times that family sometimes don't want to know because it's too scary and it has taken them time to adjust. I'm at 5 years of being sick and some of them are just starting to get educated. I know that #LOR are behind us too #patientchat |
| Richard Kreis @kreisr1 RT @OdyO11: T1: T1: When I wasn't diagnosed yet,I was very thankful for others who helped me navigate the health system and receive a diagnosis. By now, I have educated myself (reading research), I have lived experience and coping mechanisms. I want to pay it forward and help others.#patientchat |
| Richard Kreis @kreisr1 RT @JackMAiello: T3: T3: Sharing story with doc? My docs & nurse practitioner are part of my story, which they know well. Just last week I shared a stage with my NP sharing my story with APP’s (NP’s, PA’s, Interns). #patientchat |
| Radha @radhachitale RT @RaeofSunshine79: @llake @patientchat Thanks! In a perfect world I’d love to see self-advocacy studied in terms of what creates strong and healthy conversations ❤️ #patientchat |
| Jamie Roger @JamieRoger8 @llake @LReedsbooks RIGHT??? NEVER the case it seems. I'm hoping that I can go back to the same practice where my surgeon is. His daughter practices there and I've heard she is just as wonderful as he is. #fingerscrossed #praying #patientchat and I don't care that it's an hour drive! |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T5 Know your audience. Is it the appropriate one? Having said that, sometimes stories just come out when they come out. Don't worry about being emotional - it's your story, your feelings. #patientchat |
| Ody @OdyO11 A5: Be aware that online information has been used against patients in the past. Be aware that there are data brokers. Respect your own boundaries in what you want to share and how much time and (physical and emotional) energy you can and want to spend sharing. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T5 - Share only what you are comfortable sharing. Understand that sharing can be done in increments, it doesn't all need to happen at once. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Truth #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 |
| Barby Ingle Official @BarbyIngle T3. Sharing my books and articles with my providers has helped them see a bigger pictures of me and the care I need & they can read it on their own time. I have had providers tell me they are better able to treat other PTs because of me sharing my journey w them. #patientchat |
| Richard Kreis @kreisr1 RT @abrewi3010: A5 trolls, like death and taxes, are a guarantee in social media. You won’t win everyone’s heart and soul. That said, trolls are a good indicator that your message is getting out. #patientchat |
| Richard Kreis @kreisr1 RT @BarbyIngle: T2. Sharing your story can help you & others Only share what UR comfortable sharing I wrote about sharing UR story as a PT advocate: https://t.co/xuh1dcatcs I have also written about this n From Wheels to Heals book when it comes 2 employment & family/friends shares #patientchat |
| Richard Kreis @kreisr1 RT @teaminspire: And here's one great example from @Chris_Anselmo himself -- https://t.co/ZDOKSZ0QVQ. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 @LReedsbooks Ohhh! I hope that works out well! It sounds promising. You've had quite a journey. I hear you on the long drive. I travel an hour - totally worth it. #patientchat |
| Richard Kreis @kreisr1 RT @Purrfectly_Rare: T2 #patientchat I get it's scary. But U only have to share as much as you feel comfortable. Also make sure the people you start with to share your story, you trust. Working w the right ppl makes you feel more confident and gives you the courage to deal w the inevitable negativity |
| Kimberly Amelia @fireflyrn84 T5: As much as you want to share refrain from names of facilities and doctors. Legally we can be held accountable for everything that we write. Liable and slander apply to us as well. Know the laws and limits. That shouldn't be a deterrent from sharing though. #patientchat |
| Richard Kreis @kreisr1 RT @OdyO11: T1: T1: Sharing my story helps me coping. It helps me and others to understand patterns and find solutions. There is research in psychology, that understanding reduces anxiety. Understanding underlying issues and patterns is important for my self-efficacy. #patientchat |
| Kimberly Amelia @fireflyrn84 @CitizenHealthio Aww, I love you too! #patientchat |
| Richard Kreis @kreisr1 RT @BarbyIngle: T3. Sharing my books and articles with my providers has helped them see a bigger pictures of me and the care I need & they can read it on their own time. I have had providers tell me they are better able to treat other PTs because of me sharing my journey w them. #patientchat |
| Jamie Roger @JamieRoger8 @llake @LReedsbooks THanks I'm really hoping it works out too. #patientchat |
| The Patient Revolution @patientrev CT: I'm very involved w/the diabetes online community, so sometimes my health community blinders are on; it's amazing to see how many common threads unite the broader patient community. <3 #patientchat - ks |
| Your GPS Doc, LLC @yourgpsdoc CT: Everyone has a story. It can be healing for us and for others to share it. However, do it in your own time, in your own way, and on your own terms. #patientchat |
| The Patient Revolution @patientrev RT @yourgpsdoc: CT: CT: Everyone has a story. It can be healing for us and for others to share it. However, do it in your own time, in your own way, and on your own terms. #patientchat |
| Jack Aiello @JackMAiello CT: Very uplifting chat. Thanks. #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat T5 There are ways to be honest and still maintain productive dialogue without using destructive language #patientchat |
| Laurie Reed @LReedptadvocate @llake It's astounding how quickly a physician can lose a patient's trust. And with the loss of trust, there is no relationship. And with the loss of the relationship, it's difficult for patient care to occur and healing to begin. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientrev @LReedsbooks Indeed! DM is a stressful, "never a break from it" disease. My husband has been diabetic since 1976. He's in amazingly good health but it is now presenting new challenges. #patientchat |
| Alan Brewington @abrewi3010 CT KISS, Keep It Simple Stupid. Tell your story, in your own voice, at your own vulnerability risk level, and in a content medium you are comfortable with. Build it and they will come #patientchat |
| The Patient Revolution @patientrev RT @abrewi3010: CT KISS, Keep It Simple Stupid. Tell your story, in your own voice, at your own vulnerability risk level, and in a content medium you are comfortable with. Build it and they will come #patientchat |
| Barby Ingle Official @BarbyIngle T4. There are many outlets 4 patients 2 tell their stories. You have to be able to tell your story in a way that best suits the audience of what you are saying. Whether its a friend/family or the public, or provider, or specific group. Skew your story to the listener #patientchat |
| Lisa 🌲 Chau || Clover Canal 🍀💦 @Lisa03755 It was/is so difficult to speak about loneliness publicly. I wrote about it @thriveglobal. https://t.co/8Wq38sEo5R RT @kreisr1: RT @abrewi3010: A2 being vulnerable helps in healthcare. However it’s incredibly difficult to be vulnerable... #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: CT KISS, Keep It Simple Stupid. Tell your story, in your own voice, at your own vulnerability risk level, and in a content medium you are comfortable with. Build it and they will come #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 @LReedsbooks I will keep that thought in prayer. I'd be interested in hearing how it goes if you are inclined to share. Just know that I'm in your corner rooting for you! #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @LReedsbooks: @llake It's astounding how quickly a physician can lose a patient's trust. And with the loss of trust, there is no relationship. And with the loss of the relationship, it's difficult for patient care to occur and healing to begin. #patientchat |
| Jamie Roger @JamieRoger8 CT: Thank you #patientchat for being an open space to allow for #patients to share their #stories and for #empowering them. The support and encouragement form this group is heartwarming. I hope everyone takes time this weekend for #selfcare and to #relax and #recharge |
| 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 CT: It's okay that everybody has their own ways & boundaries what to share. It's wonderful that we can bring different perspectives to the table and be unique. It is great that others share more freely, and it is great that there are platforms to do so anonymously. #patientchat |
| Kimberly Amelia @fireflyrn84 @K_SalemOaks Have a great weekend, Kevin! #patientchat |
| Patient Empowerment Network @power4patients 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 |
| Alan Brewington @abrewi3010 @bbhomebody 🙏🙏🙏🙏🙏 #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @LReedsbooks @llake I agree 100%! #patientchat |
| Jamie Roger @JamieRoger8 @llake @LReedsbooks I will let you know when I work up the courage to call them haha. #patientchat DONT TURN ME AWAY!!! hahaha |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. If you would like to share your story, you can do it here: https://t.co/HQhyWGLU2T |
| Patient Empowerment Network @power4patients RT @kreisr1: T1: T1: I’ve been dealing with my chronic pain for 27yrs, helped write three books on Caregiving Tips, involved with multiple sites. If I can help one person find an easier way to help themselves or their loved one it’s worth the effort. #patientchat |
| Lisa 🌲 Chau || Clover Canal 🍀💦 @Lisa03755 I wrote about loneliness @thriveglobal . https://t.co/8Wq38sEo5R RT @barbyingle: T1: Sharing my story helps me process the situation I am in, making it more of a life lesson than a 'what happened to me' ...others benefit because they then know they are not alone #PatientChat |
| Patient Chat @patientchat Thanks so much @patientrev for sharing your insights and working towards a careful and kind healthcare system #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @ShereesePubHlth Looking forward to a great weekend planning my vacation. I have some emails to catch up on, taxes to submit, then "the don't bug me" sign will be lit for a week starting Monday night! 😄🌷#patientchat |
| Patient Chat @patientchat Don’t forget to check out the work Kerri is doing with @patientrev here: https://t.co/VwEfoT7iPU #patientchat |
| Richard Kreis @kreisr1 RT @LReedsbooks: T3 - Interesting question. In my experience, do doctors ask about your story? And do they have, or take, the time to listen? Sharing your story with a physician could potentially be very powerful and yes, it would impact decisions regarding care. #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Thanks so much @patientrev for sharing your insights and working towards a careful and kind healthcare system #patientchat |
| Richard Kreis @kreisr1 RT @radhachitale: Related, wondering what kinds of tools people/docs use to facilitate such sharing? Thinking about the neat, anthropological #dataviz charts @katiemccurdy @pictalhealth makes! #patientchat |
| Alan Brewington @abrewi3010 Thanks everyone for your love and support as I recover from neck surgery. It means the world to me 🙏 #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: #patientchat is your community. Thanks for helping make it great. If you would like to share your story, you can do it here: https://t.co/HQhyWGLU2T |
| Richard Kreis @kreisr1 RT @abrewi3010: CT KISS, Keep It Simple Stupid. Tell your story, in your own voice, at your own vulnerability risk level, and in a content medium you are comfortable with. Build it and they will come #patientchat |
| Richard Kreis @kreisr1 RT @BarbyIngle: T4. There are many outlets 4 patients 2 tell their stories. You have to be able to tell your story in a way that best suits the audience of what you are saying. Whether its a friend/family or the public, or provider, or specific group. Skew your story to the listener #patientchat |
| Kimberly Amelia @fireflyrn84 CT: I'm just glad that I remembered what day of the week it was. It is so nice to do something that has a little bit of normalcy feel to it. I needed this from everyone today! Thank you all!!! #patientchat |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @patientchat I once watched a speaker a share her story with a room full of doctors and everyone was in tears. She ended her talk with a group salsa lesson. We need to be reminded why we are all there together. That means sharing the spectrum of emotions that are often involved #patientchat |
| The Patient Revolution @patientrev Thank you for having us! <3 #patientchat - ks |
| Richard Kreis @kreisr1 RT @patientchat: Don’t forget to check out the work Kerri is doing with @patientrev here: Don’t forget to check out the work Kerri is doing with @patientrev here: https://t.co/VwEfoT7iPU #patientchat |
| Richard Kreis @kreisr1 RT @JackMAiello: T4: T4: Where to share stories? Advocacy orgs, pharma companies, research advocacy networks, cancer clinics have all provided me with opportunities to share. #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: A3: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.co/EF2HUctG7i #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @LReedsbooks Exactly! Trust is underrated in its relationship to healing. #patientchat |
| Barby Ingle Official @BarbyIngle T5. There will be 'haters' & people who judge, be ready 2 handle them. I read what they say, if it has merit & was meant 2 help I consider it, if its just mean 2 be mean I move on & let it go There R 7B people on earth U only have 2 connect to 1 to make a difference! #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Lillian Lake - Host of #SoulNestingChat @llake RT @yourgpsdoc: @llake @LReedsbooks That’s wonderful! There are still good apples in the bunch. #patientchat |
| Richard Kreis @kreisr1 RT @BarbyIngle: T5. There will be 'haters' & people who judge, be ready 2 handle them. I read what they say, if it has merit & was meant 2 help I consider it, if its just mean 2 be mean I move on & let it go There R 7B people on earth U only have 2 connect to 1 to make a difference! #patientchat |
| Patient Empowerment Network @power4patients RT @RaeofSunshine79: @patientchat I once watched a speaker a share her story with a room full of doctors and everyone was in tears. She ended her talk with a group salsa lesson. We need to be reminded why we are all there together. That means sharing the spectrum of emotions that are often involved #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody A.M.E.N. #patientchat #LOR |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 RT @patientrev: SO much this. #patientchat - ks |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, April 19th at 1pm ET | 10am PT https://t.co/v6zFYwokUh Hope to see you there! |
| Radha @radhachitale CT Very much enjoyed all the thoughtful comments, thanks, everyone, for sharing! Lots to think about re #patientstories, #creativity, #privacy, #community, resilience, etc... Thanks @patientchat @patientrev for hosting! #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Kimberly Amelia @fireflyrn84 @abrewi3010 yessssss always KISS #patientchat |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: T1: T1: Sharing my story helps me process the situation I am in, making it more of a life lesson than a 'what happened to me' or 'poor me' or even 'yah me!' and others benefit because they then know they are not alone when they go through a similar experience. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T2. Sharing your story can help you & others Only share what UR comfortable sharing I wrote about sharing UR story as a PT advocate: https://t.co/xuh1dcatcs I have also written about this n From Wheels to Heals book when it comes 2 employment & family/friends shares #patientchat |
| Patient Empowerment Network @power4patients RT @Lisa03755: It was/is so difficult to speak about loneliness publicly. I wrote about it @thriveglobal. https://t.co/8Wq38sEo5R RT @kreisr1: RT @abrewi3010: A2 being vulnerable helps in healthcare. However it’s incredibly difficult to be vulnerable... #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T3. Sharing my books and articles with my providers has helped them see a bigger pictures of me and the care I need & they can read it on their own time. I have had providers tell me they are better able to treat other PTs because of me sharing my journey w them. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T4. There are many outlets 4 patients 2 tell their stories. You have to be able to tell your story in a way that best suits the audience of what you are saying. Whether its a friend/family or the public, or provider, or specific group. Skew your story to the listener #patientchat |
| Becky Brandt DegenRN @bbhomebody CT Keep sharing because you never know when you'll meet a new colleague, friend, or research scientist who is studying a treatment for your #RareDisease 😀 Have a great weekend everyone! #CPS #CRPS @Cpnervecenter #patientchat https://t.co/sFkcM3EMhZ |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T5. There will be 'haters' & people who judge, be ready 2 handle them. I read what they say, if it has merit & was meant 2 help I consider it, if its just mean 2 be mean I move on & let it go There R 7B people on earth U only have 2 connect to 1 to make a difference! #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Richard Kreis @kreisr1 RT @patientchat: The next Empowered #patientchat will be Friday, April 19th at 1pm ET | 10am PT https://t.co/v6zFYwokUh Hope to see you there! |
| Laurie Reed @LReedptadvocate RT @BarbyIngle: T3. Sharing my books and articles with my providers has helped them see a bigger pictures of me and the care I need & they can read it on their own time. I have had providers tell me they are better able to treat other PTs because of me sharing my journey w them. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @yourgpsdoc @LReedsbooks In fact, when he was in the hospital we were blessed with THREE young, female doctors who took great care of him. They were patient, kind, compassionate, & included him in the careplan. It was REFRESHING! We had complete confidence in them. #patientchat |
 | 𝒫𝓊𝓉𝓇𝒾 @girlyable RT patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @OdyO11: CT: CT: It's okay that everybody has their own ways & boundaries what to share. It's wonderful that we can bring different perspectives to the table and be unique. It is great that others share more freely, and it is great that there are platforms to do so anonymously. #patientchat |
 | Chif @dchif RT @ShereesePubHlth: Truth #patientchat |
| Ody @OdyO11 @LReedsbooks @llake It would be great if doctors would actively seek a relationship and thus build trust. Too often they distance themselves by not listening or not believing the patient - not trusting the patient experience - which isn't a basis for trust or a relationship. #patientchat |
| Sakinah Kaiser (She/Her) @themuslimhippie RT @BarbyIngle: T5. There will be 'haters' & people who judge, be ready 2 handle them. I read what they say, if it has merit & was meant 2 help I consider it, if its just mean 2 be mean I move on & let it go There R 7B people on earth U only have 2 connect to 1 to make a difference! #patientchat |
 | Lelainia Lloyd (She/Her) ♿️🥌🎙✍️🦄 @tatterededge RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professionals, help an undiagnosed patient searching for answers & connect others with the same disease so they feel less alone. #patientchat |
#patientchat content from Twitter.