#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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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.
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.
Chris Anselmo @Chris_Anselmo
RT @patientchat: Join us in a few minutes for the Empowered #patientchat with @patientrev. Info/Topics: https://t.co/NZMRSY7iWP https://t.c…
Cat Williams @dizzycatdesign
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come together to learn from each other and discuss…
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
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
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 t…
Patient Revolution @patientrev
RT @patientchat: 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 RN @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
ReedsBooks @LReedsbooks
@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 @teaminspire
RT @patientchat: Guest @patientrev is Kerri Sparling. Dx’d with type 1 diabetes in 1986, Kerri is on the Patient Revolution team, working t…
Jamie Roger @JamieRoger8
@bbhomebody @Cpnervecenter @lisadbudzinski AMEN to the Friday celebration. Glad to see you here Becky. #patientchat
Chris Anselmo @Chris_Anselmo
Chris here from Connecticut. A patient living with limb-girdle muscular dystrophy type 2B. Hello everyone! #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 @teaminspire
Hello to #patientchat, John Novack from Inspire checking in.
Ody_O @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
ShereeseM, MS/MBA @ShereesePubHlth
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 @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
Pete Moore @paintoolkit2
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage w/ othe…
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 helpf…
Carolyn Holmes @HolmesCarolyn23
RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA
Patient Revolution @patientrev
RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA
Inspire @teaminspire
RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA
ShereeseM, MS/MBA @ShereesePubHlth
Hi all. I'm Shereese from Maryland. #patientchat
Patient Empowerment @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!…
Becky Brandt RN @bbhomebody
@JamieRoger8 @Cpnervecenter @lisadbudzinski Thanks Jamie😀💖 Its always great to see you too! #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpf…
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
Chris Anselmo @Chris_Anselmo
@JamieRoger8 Sneaking is basically just me closing my work computer, opening my home computer, and waiting frantically for my cup of coffee to be ready. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
I'm following you today. #patientchat
Ody_O @OdyO11
RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professional…
Lauren Cox @FDWarriorLauren
RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professional…
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
ShereeseM, MS/MBA @ShereesePubHlth
Hey Becky! #patientchat https://t.co/1cI4iIhEOE
Becky Brandt RN @bbhomebody
@ShereesePubHlth Hey there Shereese 😀🖐 Happy Friday #patientchat
MakeThisLookAwesome @MakeThisLookAwe
RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA
Patient Empowerment @power4patients
RT @patientchat: T1: How do you benefit from sharing your story? How do others benefit? #patientchat https://t.co/DbBF3QH2fU
Patient Revolution @patientrev
RT @patientchat: 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
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 @power4patients
A1: Check out "Why Your Patient Story Matters" blog from the fab @JBBC https://t.co/naQF4dt3bX #patientchat
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 @power4patients
RT @JackMAiello: T1: Sharing my story benefits me as a great reminder to never forget...even though it was 24 yrs ago. #patientchat
Patient Empowerment @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 l…
ShereeseM, MS/MBA @ShereesePubHlth
@bbhomebody #patientchat https://t.co/jzBro0WDK1
Chris Anselmo @Chris_Anselmo
T1: I only benefit if others benefit. I only share what I think might be useful to others. My life is pretty boring otherwise, so if I’m going to share, I want it to be something that someone can relate to or benefit from as they navigate the rare disease world. #patientchat
Rebecca Chandler @RebeccaChandle1
RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA
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 l…
Ody_O @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
Christina Lizaso @btrfly12
RT @abrewi3010: A1 I become a better communicator and listener by sharing my story. Two qualities lacking in healthcare I think. #patientch
Patient Empowerment @power4patients
RT @abrewi3010: A1 I become a better communicator and listener by sharing my story. Two qualities lacking in healthcare I think. #patientch
Patient Revolution @patientrev
RT @OdyO11: T1: Sharing my story helps me coping. It helps me and others to understand patterns and find solutions. There is research in ps…
Becky Brandt RN @bbhomebody
T1 I get to educate people whenever I tell my story. #Rarediseases like #CPS always need more coverage. And when i'm honest with people they help to build me up and get me through the bad days! Especially on social media. @Cpnervecenter #patientchat
Rachel Martens @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
ShereeseM, MS/MBA @ShereesePubHlth
RT @bbhomebody: T1 I get to educate people whenever I tell my story. #Rarediseases like #CPS always need more coverage. And when i'm honest…
Christina Lizaso @btrfly12
RT @power4patients: A1: Check out "Why Your Patient Story Matters" blog from the fab @JBBC https://t.co/naQF4dt3bX #patientchat
Patient Revolution @patientrev
SO much this. #patientchat - ks
Kevin Freiert @K_SalemOaks
RT @RaeofSunshine79: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes m…
Patient Empowerment @power4patients
@OdyO11 "Understanding reduces anxiety" YES x100 #patientchat
Patient Empowerment @power4patients
RT @RaeofSunshine79: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes m…
Rachel Martens @RaeofSunshine79
RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professional…
Ody_O @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 professional…
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
ShereeseM, MS/MBA @ShereesePubHlth
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…
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 t…
ReedsBooks @LReedsbooks
@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: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes m…
Ody_O @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 K…
Patient Empowerment @power4patients
RT @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…
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 professional…
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 @power4patients
RT @patientchat: T2: What would you say to a fellow patient who might be unsure about sharing their story? #patientchat https://t.co/lVkdRm…
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 @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
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
ReedsBooks @LReedsbooks
@power4patients @JBBC Thanks for the link! #patientchat
Chris Anselmo @Chris_Anselmo
T2: Share what you are comfortable sharing. Just know that your story is powerful to someone, somewhere. It’s not the extraordinary lives that people relate to most, it’s the everyday lives of people living with a condition that people draw the most strength from. #patientchat
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
ReedsBooks @LReedsbooks
RT @patientrev: T1. I think (hope?) others benefit from my story bc it's these shared experiences that make the burden of chronic illness l…
Patient Revolution @patientrev
RT @Chris_Anselmo: T2: Share what you are comfortable sharing. Just know that your story is powerful to someone, somewhere. It’s not the ex…
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
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…
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
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…
Ody_O @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
Becky Brandt RN @bbhomebody
T2 Start by telling your story to yourself in the mirror. With practice you'll be ready and able to share with anyone! We all have to get over that hump.....#patientchat
lillian lake @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
ReedsBooks @LReedsbooks
@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 l…
IFFGD @IFFGD
RT @patientchat: You're invited! Join us for an "The Power of Patient Storytelling" Empowered #patientchat w/special guest Kerri Sparling @…
Jamie Roger @JamieRoger8
YASSSSSS #patientchat
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
Patient Revolution @patientrev
RT @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.…
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 @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
ReedsBooks @LReedsbooks
@Chris_Anselmo Don't sensor yourself too much -- you would be surprised at what others may find beneficial! #patientchat #patientadvocacy #patientexperience
Rachel Martens @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: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes m…
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
ReedsBooks @LReedsbooks
RT @OdyO11: T1: Sharing my story helps me coping. It helps me and others to understand patterns and find solutions. There is research in ps…
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
Becky Brandt RN @bbhomebody
@fireflyrn84 💖Hows my lil Kim today? #patientchat
ReedsBooks @LReedsbooks
RT @RaeofSunshine79: @patientchat T1: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes m…
Jamie Roger @JamieRoger8
@dizzycatdesign THanks for joining the group today Cat. #patientchat
Cat Williams @dizzycatdesign
RT @Chris_Anselmo: T2: Share what you are comfortable sharing. Just know that your story is powerful to someone, somewhere. It’s not the ex…
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 @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 @power4patients
RT @abrewi3010: A2 storytelling is a skill, you will get better with practice. Push yourself to be vulnerable bc that makes for quality con…
lillian lake @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
Patient Empowerment @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…
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 @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 vul…
MakeThisLookAwesome @MakeThisLookAwe
RT @power4patients: A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar condition/situation 2.…
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 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, j…
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 @RaeofSunshine79
@patientchat Rachel here from Alberta, Canada! #patientchat
lillian lake @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 @power4patients
@llake Welcome, Lillian! #patientchat
Cat Williams @dizzycatdesign
RT @RaeofSunshine79: @patientchat T2: Only do it when ready. Nobody owns your story but you. If it affects your mental health its not worth…
lillian lake @llake
RT @RaeofSunshine79: @patientchat T2: Only do it when ready. Nobody owns your story but you. If it affects your mental health its not worth…
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/NZMRSY7iWP #patientchat
Patient Empowerment @power4patients
RT @bbhomebody: T2 Start by telling your story to yourself in the mirror. With practice you'll be ready and able to share with anyone! We a…
Jamie Roger @JamieRoger8
@llake How are you doing Lillian? #patientchat
lillian lake @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 @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 @power4patients
RT @JackMAiello: T2: To the shy story-teller? Remember what it was like when you were diagnosed and heard from others previously there. Suc…
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 vul…
Patient Empowerment @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 fe…
Patient Empowerment @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 o…
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 @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...
The Tech Officer @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 @power4patients
RT @JackMAiello: T1: Sharing your own story should also make you feel good about how far you have come #patientchat
lillian lake @llake
RT @bbhomebody: T2 Start by telling your story to yourself in the mirror. With practice you'll be ready and able to share with anyone! We a…
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 @power4patients
RT @GlobalGenes: T2 Our FREE toolkit on Using Storytelling to Raise Awareness for Your #RareDisease explains why storytelling matters, prov…
lillian lake @llake
@bbhomebody @Cpnervecenter @lisadbudzinski Hi Becky from Washington state! Great to connect with you today. #patientchat
Patient Empowerment @power4patients
RT @JBBC: @radhachitale @OdyO11 @patientrev It's an interesting question and it's very contextual - when we own our story it creates an opp…
Alan Brewington @abrewi3010
RT @power4patients: A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar condition/situation 2.…
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
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 @power4patients
RT @fireflyrn84: T2: Sharing your story doesn't mean you have to tell everything. Only share what you are comfortable with. It may become e…
ReedsBooks @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
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 person…
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
Becky Brandt RN @bbhomebody
@llake @Cpnervecenter @lisadbudzinski Hi Lillian-great to meet you!😀🖐 #patientchat
Patient Empowerment @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 @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 w…
Patient Empowerment @power4patients
RT @patientchat: T3: Has sharing your story with your doctor helped you both make decisions about your care together? #patientchat https://…
Radha @radhachitale
RT @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
Patient Empowerment @power4patients
RT @JackMAiello: T3: Sharing story with doc? My docs & nurse practitioner are part of my story, which they know well. Just last week I shar…
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 @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
Patient Revolution @patientrev
RT @yourgpsdoc: T3: Patient stories are critical to building a strong doctor-patient relationship and to receiving appropriate therapy. We…
MakeThisLookAwesome @MakeThisLookAwe
RT @yourgpsdoc: T3: Patient stories are critical to building a strong doctor-patient relationship and to receiving appropriate therapy. We…
MakeThisLookAwesome @MakeThisLookAwe
RT @fireflyrn84: I completely agree. Many times what we may see as oversharing is actually exactly what others needed! #patientchat https:/…
Marni Cartelli @Purrfectly_Rare
@abrewi3010 @power4patients LOVE this advice! #patientchat
Jamie Roger @JamieRoger8
RT @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 tol…
Ody_O @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🦎 @TheMuslimHippie
RT @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
Patient Revolution @patientrev
RT @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 tol…
Chris Anselmo @Chris_Anselmo
T3: A few years ago I shared with my neurologist that I wanted to go back to school but didn't think I could do it now that I was getting weaker. He encouraged me to pursue it and mentioned other patients of his who did it. Then we scheduled my appts around school. #patientchat
Rachel Martens @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 @teaminspire
RT @OdyO11: T3: My story, my experiences in healthcare, influence my health decisions and my reactions to suggestions. It is important that…
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 @power4patients
A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.co/EF2HUctG7i #patientchat
Becky Brandt RN @bbhomebody
T3 By Sharing with my doc , we cover the medical things, then eventually we get to the emotional issues and normal everyday things that are really difficult . We both learn a bit more at each visit. #patientchat
Patient Empowerment @power4patients
RT @Chris_Anselmo: T3: A few years ago I shared with my neurologist that I wanted to go back to school but didn't think I could do it now t…
Patient Revolution @patientrev
RT @power4patients: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.…
Patient Empowerment @power4patients
RT @OdyO11: T3: My story, my experiences in healthcare, influence my health decisions and my reactions to suggestions. It is important that…
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
Jamie Roger @JamieRoger8
RT @Chris_Anselmo: T3: A few years ago I shared with my neurologist that I wanted to go back to school but didn't think I could do it now t…
Chris Anselmo @Chris_Anselmo
@LReedsbooks Thanks! I just meant that I usually write blog posts about my previous few weeks/months rather than provide updates on a daily basis, boiling down the most useful parts of my experience. That probably didn't come out in my answer #patientchat
Becky Brandt RN @bbhomebody
@abrewi3010 @JamieRoger8 OH NO! Out of coffee? YIKES!😀🤯🖐 Hi Alan #patientchat
Patient Empowerment @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
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
Inspire @teaminspire
RT @power4patients: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.…
Patient Empowerment @power4patients
RT @JBBC: @radhachitale @OdyO11 @patientrev You're so right Radha - I actually started off anonymously sharing my story but when I saw othe…
Patient Empowerment @power4patients
RT @patientchat: T4: Where can patients tell their stories? How can/do you share your patient story? #patientchat https://t.co/1eB1uTeRr6
lillian lake @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: What would you say to a fellow patient who might be unsure about sharing their story? #patientchat https://t.co/lVkdRm…
🦎 Sakinah🦎 @TheMuslimHippie
RT @power4patients: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.…
Richard Kreis @kreisr1
RT @patientchat: T1: How do you benefit from sharing your story? How do others benefit? #patientchat https://t.co/DbBF3QH2fU
Richard Kreis @kreisr1
RT @patientchat: T3: Has sharing your story with your doctor helped you both make decisions about your care together? #patientchat https://…
Alan Brewington @abrewi3010
RT @power4patients: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.…
Richard Kreis @kreisr1
RT @abrewi3010: A1 I become a better communicator and listener by sharing my story. Two qualities lacking in healthcare I think. #patientch
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 l…
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
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 t…
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 @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
Patient Revolution @patientrev
RT @radhachitale: Related, wondering what kinds of tools people/docs use to facilitate such sharing? Thinking about the neat, anthropologic…
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: I find it personally therapeutic. It somehow marks my existence in the larger world when life makes m…
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…
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. Hav…
Richard Kreis @kreisr1
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come together to learn from each other and discuss…
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 @Chris_Anselmo: T1: I only benefit if others benefit. I only share what I think might be useful to others. My life is pretty boring othe…
Richard Kreis @kreisr1
RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Empowerment @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
ReedsBooks @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
Patient Empowerment @power4patients
RT @JackMAiello: T4: Where to share stories? Advocacy orgs, pharma companies, research advocacy networks, cancer clinics have all provided…
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: 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 ow…
lillian lake @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 h…
Patient Chat @patientchat
RT @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 ow…
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 @teaminspire
RT @Purrfectly_Rare: T3 #patientchat My Drs & I make every decision about care 2gether. I dont hide anything from them or selectively tell…
lillian lake @llake
RT @JackMAiello: T4: Where to share stories? Advocacy orgs, pharma companies, research advocacy networks, cancer clinics have all provided…
Patient Empowerment @power4patients
RT @Purrfectly_Rare: T3 #patientchat My Drs & I make every decision about care 2gether. I dont hide anything from them or selectively tell…
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 @llake
RT @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 ow…
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
Becky Brandt RN @bbhomebody
T4 Family and friends are a good place to start, then on social media, other websites, and eventually to strangers, or random people anywhere, anytime when the right moment presents itself. #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: 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 con…
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 need…
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 liste…
Richard Kreis @kreisr1
RT @Chris_Anselmo: T2: Share what you are comfortable sharing. Just know that your story is powerful to someone, somewhere. It’s not the ex…
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 o…
Patient Empowerment @power4patients
RT @yourgpsdoc: T4: At home, family gatherings, in healthcare settings, at church, in school, on social media...wherever they feel comforta…
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 helpf…
Patient Empowerment @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…
Kimberly Amelia @fireflyrn84
@CitizenHealthio Thank you! You are all amazing, thanks for the well wishes <3 #patientchat
Richard Kreis @kreisr1
RT @MakeThisLookAwe: A3: Absolutely. The story is more powerful than a list of symptoms. Anyone can Google. Intimate details speak #truth.…
Richard Kreis @kreisr1
RT @patientchat: Today's #patientchat topic is The Power of Patient Storytelling https://t.co/NZMRSY7iWP https://t.co/sNKEAIlvIA
Chris Anselmo @Chris_Anselmo
T4: Anywhere really. Online patient forums, conferences, your local newspaper, your elected representatives, etc. Also depends on your goal, whether you want to educate the public, raise awareness for your condition, highlight a policy issue, etc. But it's limitless! #patientchat
Alan Brewington @abrewi3010
RT @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 ow…
Richard Kreis @kreisr1
RT @patientchat: 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
Patient Revolution @patientrev
RT @Chris_Anselmo: T4: Anywhere really. Online patient forums, conferences, your local newspaper, your elected representatives, etc. Also d…
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: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #pa
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…
Jamie Roger @JamieRoger8
@radhachitale @JBBC @OdyO11 @patientrev Love this terminology. It always helps to paint a picture with your words. #storytelling #patientchat
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
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 can find out more about @patientrev and their mission here: https://t.co/FCaiVYn1oS #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 @…
Patient Empowerment @power4patients
RT @Chris_Anselmo: T4: Anywhere really. Online patient forums, conferences, your local newspaper, your elected representatives, etc. Also d…
Your GPS Doc, LLC @yourgpsdoc
RT @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 ow…
Alan Brewington @abrewi3010
RT @bbhomebody: T4 Family and friends are a good place to start, then on social media, other websites, and eventually to strangers, or ran…
Patient Empowerment @power4patients
RT @bbhomebody: T4 Family and friends are a good place to start, then on social media, other websites, and eventually to strangers, or ran…
lillian lake @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…
Inspire @teaminspire
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…
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…
Ody_O @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: Sharing my story benefits me as a great reminder to never forget...even though it was 24 yrs ago. #patientchat
Rachel Martens @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 o…
Richard Kreis @kreisr1
RT @bbhomebody: T4 Family and friends are a good place to start, then on social media, other websites, and eventually to strangers, or ran…
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 professional…
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 @Chris_Anselmo: T3: A few years ago I shared with my neurologist that I wanted to go back to school but didn't think I could do it now t…
Richard Kreis @kreisr1
RT @JackMAiello: T2: To the shy story-teller? Remember what it was like when you were diagnosed and heard from others previously there. Suc…
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
Richard Kreis @kreisr1
RT @ShereesePubHlth: T1 Sharing my story helps me advocate better for others. Others benefit from my experiences and my failures #patientch
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 @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: Sharing your story doesn't mean you have to tell everything. Only share what you are comfortable with. It may become e…
Patient Empowerment @power4patients
RT @patientchat: T5: What words of caution would you have for people thinking about sharing their story? #patientchat https://t.co/9tAhmBhu…
Barby Ingle 📣 @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 @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 @power4patients
RT @JBBC: @GlobalGenes love your toolkit - I mentioned it here https://t.co/7zZbEhXrfM and recommend it often #patientchat
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 @power4patients
RT @RaeofSunshine79: @patientchat T4: I moderate a Facebook group for engaging stakeholders and researchers in the same space. Local adviso…
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
h e a t h e r z e e 🇺🇸⏳🦋 @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: My story, my experiences in healthcare, influence my health decisions and my reactions to suggestions. It is important that…
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: I enjoy helping others & trying to…
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🦎 @TheMuslimHippie
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' o…
Patient Revolution @patientrev
@K_SalemOaks Thanks for sharing, Kevin! Loved your insight. #patientchat - ks
Patient Revolution @patientrev
RT @JackMAiello: T5: Words of caution? Remind listeners that their own experiences may be quite different from your own. #patientchat
lillian lake @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: What words of caution would you have for people thinking about sharing their story? #patientchat https://t.co/9tAhmBhu…
Richard Kreis @kreisr1
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' o…
Richard Kreis @kreisr1
RT @abrewi3010: A2 being vulnerable helps in healthcare. However it’s incredibly difficult to be vulnerable, sharing my story helps me deve…
Becky Brandt RN @bbhomebody
T5 There will always be someone who challenges you. They either don't believe you or they dont agree with opioids for pain, or disability etc. They'll say, "Have u tried yoga, meditation, acupuncture? Or they'll talk about how easy it was for their Aunt or cousin. #patientchat
lillian lake @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 kn…
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 || AlphaVert @Lisa03755
RT @thetechofficer: RT @power4patients: A2: A few things: 1. Sharing your story will more than likely benefit someone else w/ a similar con…
Patient Empowerment @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
ShereeseM, MS/MBA @ShereesePubHlth
@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 @power4patients
RT @JackMAiello: T5: Words of caution? Remind listeners that their own experiences may be quite different from your own. #patientchat
lillian lake @llake
RT @patientchat: T5: What words of caution would you have for people thinking about sharing their story? #patientchat https://t.co/9tAhmBhu…
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: Tell your story on your own terms. Whatever, whenever and where ever that means to you as an individual. You are SO…
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: 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: Tell your story on your own terms. Whatever, whenever and where ever that means to you as an individual. You are SO…
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 fe…
Barby Ingle 📣 @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
The Tech Officer @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: When I wasn't diagnosed yet,I was very thankful for others who helped me navigate the health system and receive a diagnosis…
Alan Brewington @abrewi3010
RT @bbhomebody: T5 There will always be someone who challenges you. They either don't believe you or they dont agree with opioids for pain,…
Richard Kreis @kreisr1
RT @JackMAiello: T3: Sharing story with doc? My docs & nurse practitioner are part of my story, which they know well. Just last week I shar…
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 a…
Becky Brandt RN @bbhomebody
@fireflyrn84 Same here....writing is therapeutic in its own way. #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 @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_O @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
ReedsBooks @LReedsbooks
@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
Chris Anselmo @Chris_Anselmo
T5: I'd just remember that everyone's experience is different. This helps when you communicate advice to others, and it also is a helpful reminder when people tell you what you should have done, critique you, etc. It comes with opening yourself up. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
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 📣 @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, troll…
Richard Kreis @kreisr1
RT @bbhomebody: T5 There will always be someone who challenges you. They either don't believe you or they dont agree with opioids for pain,…
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…
Richard Kreis @kreisr1
RT @teaminspire: And here's one great example from @Chris_Anselmo himself -- https://t.co/ZDOKSZ0QVQ. #patientchat https://t.co/qkAh5CjCkt
lillian lake @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…
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: Sharing my story helps me coping. It helps me and others to understand patterns and find solutions. There is research in ps…
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…
Liesbeth Moortgat @MoortgatL
A5. None just be your authentic self and everything will be okay #patientchat
Jamie Roger @JamieRoger8
@llake @LReedsbooks THanks I'm really hoping it works out too. #patientchat
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
Becky Brandt RN @bbhomebody
@fireflyrn84 Your #LadiesOfRare will always have your back! The friends we meet along the way can be just as awesome as the friends we've known for decades! #patientchat #LOR
Patient Revolution @patientrev
RT @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…
Jack Aiello @JackMAiello
CT: Very uplifting chat. Thanks. #patientchat
Rachel Martens @RaeofSunshine79
@patientchat T5 There are ways to be honest and still maintain productive dialogue without using destructive language #patientchat
ReedsBooks @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
lillian lake @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
Liesbeth Moortgat @MoortgatL
A5 be aware that caregivers can learn a lot from #storytelling from a patients view #sharingiscaring #patientchat
Becky Brandt RN @bbhomebody
GREAT POINT Alan! #patientchat
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…
Barby Ingle 📣 @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 || AlphaVert @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 @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…
lillian lake @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 relatio…
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 @teaminspire
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ C…
Ody_O @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 @power4patients
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ C…
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 @power4patients
RT @kreisr1: T1: I’ve been dealing with my chronic pain for 27yrs, helped write three books on Caregiving Tips, involved with multiple site…
Lisa || AlphaVert @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
Liesbeth Moortgat @MoortgatL
Proud of @ingevdln #storytelling #chronicillness #liesing https://t.co/7k98tNZton #patientchat
Patient Chat @patientchat
Thanks so much @patientrev for sharing your insights and working towards a careful and kind healthcare system #patientchat
lillian lake @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 liste…
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, anthropologic…
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 her…
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…
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…
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 @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
Richard Kreis @kreisr1
RT @bbhomebody: GREAT POINT Alan! #patientchat https://t.co/JtdTUC0CKT
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: https://t.co/VwEfoT7iPU #patientchat
Richard Kreis @kreisr1
RT @JackMAiello: T4: Where to share stories? Advocacy orgs, pharma companies, research advocacy networks, cancer clinics have all provided…
Mighty Casey #PatientsIncluded AF 🔥🔥 @MightyCasey
RT @power4patients: A3: @MightyCasey shares some great tips for communicating with your care team in her 'Storytelling 101' blog https://t.…
lillian lake @llake
@LReedsbooks Exactly! Trust is underrated in its relationship to healing. #patientchat
Barby Ingle 📣 @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 @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…
Patient Empowerment @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 end…
Kimberly Amelia @fireflyrn84
@bbhomebody A.M.E.N. #patientchat #LOR
Rachel Martens @RaeofSunshine79
RT @patientrev: SO much this. #patientchat - ks https://t.co/eI6DH9oYNv
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® @powerofpain
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' o…
International Pain Foundation® @powerofpain
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…
Patient Empowerment @power4patients
RT @Lisa03755: It was/is so difficult to speak about loneliness publicly. I wrote about it @thriveglobal. https://t.co/8Wq38sEo5R RT @kr
International Pain Foundation® @powerofpain
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…
International Pain Foundation® @powerofpain
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…
Becky Brandt RN @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® @powerofpain
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…
Richard Kreis @kreisr1
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Patient Empowerment @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 the…
ReedsBooks @LReedsbooks
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…
lillian lake @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
O1O @gcesture
RT patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
lillian lake @llake
RT @OdyO11: CT: It's okay that everybody has their own ways & boundaries what to share. It's wonderful that we can bring different perspect…
Dr. Chif 🇿🇼🇵🇭 @dchif
RT @ShereesePubHlth: Truth #patientchat https://t.co/GR0m7hUXyA
Becky Brandt RN @bbhomebody
@Purrfectly_Rare @Cpnervecenter @lisadbudzinski We can't wait to meet you IRL someday Marni!!! #patientchat https://t.co/UMIX6HQMon
Ody_O @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🦎 @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…
Tattered Edge @tatterededge
RT @GlobalGenes: T1 Storytelling is important in the #raredisease community to raise awareness of the disease among healthcare professional…
#patientchat content from Twitter.