#HAchat transcript

Healthcare Social Media Transcript

From: Tue May 29 7:12:00 PDT 2012
To: Wed May 30 7:12:00 PDT 2012

What is #HAchat? Who were the influencers during this time period? #HAchat analytics


Healthcare Conference  - Healthcare Tweet Chats  -  Healthcare Analytics

wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Today's #HAchat will be on patient identity and how we look at diagnosis: http://t.co/2xDxuNrh us at 3pm ET to discuss
apdolan
https://pbs.twimg.com/profile_images/656104595618406401/Hd1XULGY_normal.jpg
RT @wegohealth: Today's #HAchat will be on patient identity and how we look at diagnosis: http://t.co/8mG7wc51 us at 3pm ET to discuss
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
@wegohealth You need to have a gap between the bit.ly link and join. Best of luck with the #HAchat today on patient identity.
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Today's #HAchat will be on patient identity and how we look at diagnosis: http://t.co/CqUrCLLM - Join us at 3pm ET to discuss
apdolan
https://pbs.twimg.com/profile_images/656104595618406401/Hd1XULGY_normal.jpg
RT @wegohealth: Today's #HAchat is on patient identity and how we look at diagnosis: http://t.co/zHxjR6Mp - Join us at 3pm ET to discuss
DiabetesSocMed
https://pbs.twimg.com/profile_images/378800000723577673/30fc56e332578b3ed2fb95d3fc11868d_normal.jpeg
RT @wegohealth: Today's #HAchat will be on patient identity and how we look at diagnosis: http://t.co/CqUrCLLM - Join us at 3pm ET to discuss
tuftspreppain
https://pbs.twimg.com/profile_images/1417520892/twitter_normal.jpg
Sounds like a great topic today on #hachat at 3 PM EDT Exploring pt identity -- how does/doesn't illness define you http://t.co/3yFfgrlg
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
Sounds like a great topic today on #hachat at 3 PM EDT Exploring pt identity -- how does/doesn't illness define you http://t.co/lhfAAnpy
sansumdiabetes
https://pbs.twimg.com/profile_images/2695565759/d1fe2d567ce53d0c3e5c433bdbaa3269_normal.png
RT @wegohealth: Today's #HAchat will be on patient identity and how we look at diagnosis: http://t.co/CqUrCLLM - Join us at 3pm ET to discuss
sikcell
https://pbs.twimg.com/profile_images/758065056882036736/cWNYRp8w_normal.jpg
RT @wegohealth: Today's #HAchat will be on patient identity and how we look at diagnosis: http://t.co/CqUrCLLM - Join us at 3pm ET to discuss
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
What’s the difference between how you see yourself pre-diagnosis & post-diagnosis? Discuss with us in 1hr: http://t.co/QOa3y0JN #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
Whoaaaa! Did ya'll see the #HaChat topic for the @wegohealth chat today at 3pm est? "Pre-diagnosis you vs post-diagnosis you" I'm SO there!
apdolan
https://pbs.twimg.com/profile_images/656104595618406401/Hd1XULGY_normal.jpg
How can we work together to make newly diagnosed patients feel comfortable with themselves? Join the #HAchat in 1hr to discuss!
againstlupus
https://pbs.twimg.com/profile_images/1107387443/d0ec56c6-9ca0-4c0b-bf6a-5e29b6eda71a_normal.png
RT @apdolan: How can we work together to make newly diagnosed patients feel comfortable with themselves? Join the #HAchat in 1hr to discuss!
SLEYoungLeaders
https://pbs.twimg.com/profile_images/378800000077794209/b54b701e4ac877a4140c6791bd57902d_normal.jpeg
RT @apdolan: How can we work together to make newly diagnosed patients feel comfortable with themselves? Join the #HAchat in 1hr to discuss!
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
RT @apdolan: How can we work together to make newly diagnosed patients feel comfortable with themselves? Join the #HAchat in 1hr to discuss!
intractablepain
https://pbs.twimg.com/profile_images/460550082358571009/Dx6oXW5Q_normal.jpeg
RT @wegohealth: How'd ya see yourself pre-diagnosis vs. post? Discuss in 20m http://t.co/OyOgW59o #HAchat #chronicpain #chronicillness
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Join us in 30 to talk patient identity (diagnosis, perception, labels, &more) - use #HAchat or visit: http://t.co/WzGttRNw #hcsm
EricGlazer
https://pbs.twimg.com/profile_images/60567341/Smile_5_retouched_normal.jpg
RT @wegohealth: Join us in 30 to talk patient identity (diagnosis, perception, labels, &more) - use #HAchat or : http://t.co/75HJu1U4 #hcsm
apdolan
https://pbs.twimg.com/profile_images/656104595618406401/Hd1XULGY_normal.jpg
RT @wegohealth: Join us in 30 to talk patient identity (diagnosis, perception, labels, &more) #HAchat http://t.co/0XlbXcoi #hcsm
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
About to start our tweetchat about patient identity - join us! http://t.co/WzGttRNw #HAchat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
RT @wegohealth: About to start our tweetchat about patient identity - join us! http://t.co/qiJp6Wzm #hachat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: About to start our tweetchat about patient identity - join us! http://t.co/WzGttRNw #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
Join me for a #HAchat TweetChat at: http://t.co/5e6SUrm8 #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Welcome to the Health Activist Tweetchat! Today we'll be discussing patient identity, diagnosis, & more. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
RT @wegohealth: Welcome to the Health Activist Tweetchat! Today we'll be discussing patient identity, diagnosis, & more. #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: Welcome to the Health Activist Tweetchat! Today we'll be discussing patient identity, diagnosis, & more. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
The @Wegohealth #HaChat starts NOW, join us as we discuss our patient identities & diagnosis ~> http://t.co/RppT0tkH #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Let’s quickly introduce ourselves: Name/username, blog name or URL, health community or condition & hashtag about you. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
The @Wegohealth #HaChat starts NOW, join us as we discuss our patient identities & diagnosis ~> http://t.co/gsYAvB52 #HaChat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
hi im laurie recovering bipolar 2 and wego health activist #HAchat
wecan4health
https://pbs.twimg.com/profile_images/421351109286838272/JsQvNcxe_normal.jpeg
@tiffanyandlupus #hachat ?? Sounds interesting, may just have to set up a stream for that! Hi @wegohealth
caitlin_cumming
https://pbs.twimg.com/profile_images/1778504499/n5319340_35763843_2512_normal.jpg
Caitlin, Community Coordinator Extrordinaire here at @wegohealth. Excited for today's #HAchat! #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
In May we’re focusing on Setting The Record straight and today’s chat will focus on that – with regards to identity & diagnosis. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Welcome and feel free to jump in at any time! #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Today let’s start by looking at how people’s health conditions play into how they see themselves. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Topic 1: How do people’s health conditions (symptoms, diagnoses, treatment, etc) factor into how they see themselves? #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
Rhiann here from Brain Lesion and Me (http://t.co/cXyfUmFZ) #hachat
apdolan
https://pbs.twimg.com/profile_images/656104595618406401/Hd1XULGY_normal.jpg
RT @wegohealth: Topic 1: How do people’s health conditions (symptoms, diagnoses, treatment etc) factor into how they see themselves? #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
RT @wegohealth: About to start our tweetchat about patient identity - join us! http://t.co/dQ4ydPWD #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
@HealthcareNovel Yes! #HaChat stands for :Health Activist Chat. Hey @wegohealth this is Robert, awesome health advocate :)
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
Katharine here! I blog at From A to Pink about living w/ #cysticfibrosis. http://t.co/FjlKSfcR #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
Sorry I'm late! Hi! #HAchat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth sometimes you become the label. it becomes your defining characteristic #hachat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
RT @wegohealth Topic 1: How do people’s health conditions (symptoms, diagnoses, treatment, etc) factor into how they see themselves? #HAchat
caitlin_cumming
https://pbs.twimg.com/profile_images/1778504499/n5319340_35763843_2512_normal.jpg
@HealthcareNovel Welcome, Robert! Hope you'll join us. Any friend of @TiffanyAndLupus is a friend of @wegohealth #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: Today let’s start by looking at how people’s health conditions play into how they see themselves. #HAchat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
participating with a 3 year old sleeping across my chest. can barely reach the keyboard :) #hachat
caitlin_cumming
https://pbs.twimg.com/profile_images/1778504499/n5319340_35763843_2512_normal.jpg
@marandacarvell such dedication! #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @marandacarvell: @wegohealth sometimes you become the label. it becomes your defining characteristic #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T1: Although our conditions do not define us as a person, sometimes it's all that other people see - asking us how we are #hachat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T1: It can be difficult to see yourself withOUT the disease. #cysticfibrosis #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
We have to remember our conditions are not who we are but rather that it is a part of us #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @KatharineS84: T1: It can be difficult to see yourself withOUT the disease. #cysticfibrosis #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
RT @KatharineS84: T1: It can be difficult to see yourself withOUT the disease. #cysticfibrosis #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
T1.1: What’s the difference between how you see yourself pre-diagnosis and post-diagnosis? #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @serenebutterfly: We have to remember our conditions are not who we are but rather that it is a part of us #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T1: I struggled w/ppl finding out I had CF before they got to know ME. Didn't want them to only see me as "sick." #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
It's easy to feel "less than" other people, or automatically more limited than others. #HAchat
caitlin_cumming
https://pbs.twimg.com/profile_images/1778504499/n5319340_35763843_2512_normal.jpg
diagnosis can feel like you're losing your identity. now that you have X you can no longer do Y. #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
sometimes i feel stuck once illness identified ( a fence sitter) move through it with supportive therapy, than back to work mode #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T1.1: For the most part I see myself as the same, but stronger. It's my feelings toward the future that have changed. #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
T1: I think sometimes people start to define themselves by their illnesses and negative symptoms. #HAchat
Dyverse_Steele
t1 sometimes the stigma of disease can even affect your own thinking maybe it is in my head a little bit #hachat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
Yes! MT @KatharineS84 T1: I struggled w/ppl finding out I had CF before they got to know ME. Didn't want them 2 only c me as "sick." #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: RT @serenebutterfly: We have to remember our conditions are not who we are but rather that it is a part of us #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T1.1 - Before the diagnosis I thought myself as being weird or weak, after I realise it's because I have a neurological condition #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @KatharineS84 T1: I struggled w/ppl finding out I had CF before they got to know ME. Didn't want them to only see me as "sick." #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
Ooops! Forgot my intro. pardon my lateness! Tiffany, lupus/health blogger at http://t.co/ExJzDA3A, #GlitteratiMermaid :) #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Yes RT @Dyverse_Steele: t1 sometimes the stigma of disease can even affect your own thinking maybe it is in my head a little bit #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
Getting a diagnosis was a relief - I had a course of action after 11 years of not knowing what was wrong. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @LifeUnbound: T1: I think sometimes people start to define themselves by their illnesses and negative symptoms. #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
RT @caitlin_cumming: diagnosis can feel like youre losing your identity. now that you have X you can no longer do Y. #hachat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T1: For many their illness is a crutch, a destroyer of all they did & loved. For some denial is better than accepting our reality... #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Excellent segue: RT @CIRants: Getting a diagnosis was a relief - I had a course of action after 11yr of not knowing what was wrong. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
For our next topic let’s talk about diagnosis in particular. #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T1.1: Having an answer to why I was sick all the time was a relief. Initially I felt more in control. #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
Agreed! RT @LifeUnbound: T1: I think sometimes people start to define themselves by their illnesses and negative symptoms. #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
Diagnosis can provide community - other who understand and who can provide insight. #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
RT @CIRants: Getting a diagnosis was a relief - I had a course of action after 11 years of not knowing what was wrong. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T1: I know that during my lupus diagnosis I fell into a deep despair and a cold, lonely, and frustrating state of self-pity. #HaChat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
T1.1: Before the diagnosis I was full of doubts about myself: wondering was I doing something wrong in my lifestyle. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
RT @wegohealth: T1.1: What’s the difference between how you see yourself pre-diagnosis and post-diagnosis? #HAchat
marandacarvell
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@serenebutterfly me too #hachat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T1.1 The reactions have been different post diagnosis - more understanding now they know it's not 'in my head' or imagined #hachat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
Ooops! Forgot my intro. pardon my lateness! Tiffany, lupus/health blogger at http://t.co/kKEfL4Rz, #GlitteratiMermaid :) #HaChat
Dyverse_Steele
t1 when you are first diagnosed with any chronic illness you will change #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Topic 2: Does a definitive diagnosis (with a name, etc) make a difference? How? #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
T1:1 I'm 2 completely different people before/after my condition. I can't be her anymore. Her activities hurt. She is not me. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @TomKindlon: T1.1: Before the diagnosis I was full of doubts about myself: wondering was I doing something wrong in my lifestyle. #HAchat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
Been there... MT @TiffanyAndLupus: For many illness is destroyer of all they loved. For some denial is better than accepting reality #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @Dyverse_Steele: t1 when you are first diagnosed with any chronic illness you will change #HAchat
Dyverse_Steele
t1.1 you can no longer be as care free as you once was #hachat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T1.1: I have accepted that I have lupus. That I am not whats considered "normally healthy." I feel much lighter after leaving denial #HaChat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: RT @Dyverse_Steele: t1 when you are first diagnosed with any chronic illness you will change #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
I'm participating in Health Activist chat on TweetChat! http://t.co/7uc0zf9o (Sorry I'm late... log-in issues ^_^) #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T2: Having a diagnosis has pros & cons. It gives you some power, some options, but it also opens up other scary doors. #HAchat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
Ditto! MT @MakeThisLookAwe: I'm 2 completely different people before/after. Can't be her anymore. Her activities hurt. She is not me #HAchat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth it's been good for my emotional health in many ways. i know i have A, B, C and not just tired/crazy/whatever #hachat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
RT @wegohealth: Topic 2: Does a definitive diagnosis (with a name, etc) make a difference? How? #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T2: I found my diagnosis bittersweet - upset as there's nothing they can do to fix me but relieved that there was a name to it #hachat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth also we've made some life changes as a family now that i know i'm not going to 'get better'. has made life easier #hachat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
T2: Diagnosis helped as could lower expectations: wasn't expected to keep up to the level of healthy people, which I couldn't do #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
MT @KatharineS84: T2: Having a dx has pros & cons. It gives you some power, some options, but it also opens up other scary doors. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
MT @KatharineS84: T2: a diagnosis has pros & cons. It gives you some power, some options, but it also opens up other scary doors #HAchat
caitlin_cumming
https://pbs.twimg.com/profile_images/1778504499/n5319340_35763843_2512_normal.jpg
Exactly, means you have to do something about it RT @KatharineS84: It gives you some power, but it also opens up other scary doors. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T1.1: Post-diagnosis me now feels very empowered by my life choices after diagnosis. By owning & admitting it I feel much happier. #HaChat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
RT @wegohealth: Topic 2: Does a definitive diagnosis (with a name, etc) make a difference? How? #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
Some of my diagnoses opened doors for treatment. Knowing what it was was a relief. We weren't just flying blind anymore. #HAchat
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
Hi all, sorry to be late #hachat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T2: Diagnosis is also a great tool to finding out more about symptoms being experienced and what is going on with your body, etc #hachat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth it's a lot easier to have a plan of action, even if i don't always love the plan ;) #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
MT @serenebutterfly: T2: I found my diagnosis bittersweet - upset theres nothing they can do but relieved that theres a name to it #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T2: That period of "un-diagnosed or misdiagnosis" are frustrating & scary. Finally knowing the name of the issue brings some relief. #HaChat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
T1: Keep saying I would be such different person without. Much smarter, stronger, wiser now. Don't think I'd like alternative me #HAchat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
T2: Diagnosis helped me a lot: advice one gives to a healthy person with my symptoms isn't what one gives to somebody with #MECFS #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
Sorry I'm late! Mocha here, blogging at http://t.co/Um6RALto part of the #DOC with t1 diabetes&a butt load of other stuff #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
I was too caught up in whether people believed me or not before I found out I had an Systemetic Autoimmune Illness making it worse.#HAchat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
T2: 2nd opinion was bigger than dx- at young age, I needed more guidance and someone who actually cared. Who knew how to talk to me #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
T2: Definetly! Though many people fear labels, I believe just "knowing" specifically what you have relieves a lot of anxiety. #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
T2: The diagnosis (#dx) was never scary for me. I was already suffering/surviving the symptoms. #HAchat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@TiffanyAndLupus absolutely. we went thru a period when we thought i was going to die and i was terrified to be alone #hachat
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
@TiffanyAndLupus T2 Yes, having a name for an illness somehow brings validity to symptoms #hachat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
Diagnosis sets expectations - higher or lower, they are what they are, and it provides a chance to accept them. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Now let's talk semantics. #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
Agreed!! RT @pamressler: @TiffanyAndLupus T2 Yes, having a name for an illness somehow brings validity to symptoms #hachat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
diagnosis was relief laurie wego, gives oportunities 2 seek support from others with like diagnosis , know i am not alone anymore #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T1: I see all of my health stuff as part of me, like my hair color or my sense of humor, at least on a good day. #HAchat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
T1.1 @TiffanyAndLupus exactly! But I'm watching someone else deal with it very differently right now, too. We all have our moments. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
T2.1: In your community, in particular, are there labels/names that are used as a way to unite people post-diagnosis? #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
RT @pamressler: @TiffanyAndLupus T2 Yes, having a name for an illness somehow brings validity to symptoms #HAchat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth dx also helps explain to ppl what is 'wrong' with you. I have XYZ is something ppl can understand #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Some sort of "proof" yes RT @pamressler: T2 Yes, having a name for an illness somehow brings validity to symptoms #HAchat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth compared to a random list of symptoms #hachat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
RT @wegohealth T2.1: In your community, in particular are there labels/names that are used as a way to unite people post-diagnosis? #HaChat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
RT @wegohealth: T2.1: In your community, are there labels/names that are used as a way to unite people post-diagnosis? #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: Some sort of "proof" yes RT @pamressler: T2 Yes, having a name for an illness somehow brings validity to symptoms #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Yes good point: RT @marandacarvell: dx also helps explain to ppl what is wrong with you. I have XYZ is something ppl can understand #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T1.1: I don't see myself differently because of a diagnosis. I see myself being relived, since this "thing" now has a name. #HAchat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
T2: Diagnosis helped as could call in support of other people: couldn't do that when didn't have a label for my symptoms #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
yes at Wh T2 lables like survivor, mentoring like people,activist #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T2.1: In the lupus community, I like to think of us as "Lupus Warriors", we often call each other "lupies". :) #HaChat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
RT @wegohealth: Some sort of "proof" yes RT @pamressler: T2 Yes, having a name for an illness somehow brings validity to symptoms #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @TiffanyAndLupus: T2.1: In the lupus community, I like to think of us as "Lupus Warriors", we often call each other "lupies". :) #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
2.1: I have to give a shout-out to #spoonie for being such a uniting/inclusive word - despite the wide range of diagnoses/symptoms #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T2: It helps me. It lets me know that there are things to do. It helps me focus my research. It lets me connect to others. #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
T2:1 For all invisible diseases, pre- and post-diagnosis, But You Don't Look Sick's #spoonie!!! #bydls #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T2.1: We refer to each other and cysters (females) and fibros (males). It does make it feel like more of a "club" than an illness. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T2.1: Some in lupus com refer to themselves as butterflies which is not only the shape of facial rash we get; it's a symbol of hope. #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @lauriepna: yes at Wh T2 lables like survivor, mentoring like people,activist #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Yes! RT @MakeThisLookAwe: T2:1 For all invisible diseases, pre- and post-diagnosis, But You Dont Look Sicks #spoonie!!! @bydls #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
MT @wegohealth: 2.1: I have to give a shout-out to #spoonie for being such a uniting/incl word - despite the wide range of dx/symp #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
@caitlin_cumming Exactly! And that there are some things out of your control, inevitables. #hachat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T2.1: Having something to call ourselves, like "lupies" helps us find each other on social networks like Twitter! #HaChat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
T2:1 My disease is rare (less than 400 cases), so I call us #medicalunicorns #HAchat
caitlin_cumming
https://pbs.twimg.com/profile_images/1778504499/n5319340_35763843_2512_normal.jpg
LOVE THIS. @KatharineS84: We refer to each other and cysters (females) and fibros (males). #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Love this! RT @KatharineS84 T2.1: We refer to each other and cysters (females) and fibros (males). More of a "club" than an illness #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T2.1: There are no names or labels that I use as I have yet to meet anyone with the same diagnoses as me so get support via symptoms #hachat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
terms like #spoonie help ppl connect and create an instant community of ppl who 'get' you #hachat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T1.1: I get confused by backlash I've gotten for talking about lupus so much, even from patients! Some feel I let it dictate my life #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
T2.2: Conversely – any words/phrases that you do not identify with? (Example: Diabetic vs. Person With Diabetes) #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
I love this!! RT @MakeThisLookAwe: T2:1 My disease is rare (less than 400 cases), so I call us #medicalunicorns #hachat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth love @whatthejules #chronicallyawesome hashtag for uniting others who lift me up, don't bring me down, yet still get me #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Important to note: MT @serenebutterfly: T2.1 No names/labels I use as Ive yet to meet 1w/ same diagnoses; I get support via symptoms #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T2.1: Yes and no. In the #DOC, we differentiate type, but that's about it. A lot of people are miss-typed, so...yeah. #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
at marandacarvell what does "spoonie mean? #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T2.2: I'm not a fan of terms like "suffering from." Makes it seem like my life is constantly unbearable. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Yes! RT @marandacarvell: terms like #spoonie help ppl connect and create an instant community of ppl who get you #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
@serenebutterfly Ty! I even got to meet another unicorn! http://t.co/YVw2sH5C #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @KatharineS84 T2.2: I'm not a fan of terms like "suffering from." Makes it seem like my life is constantly unbearable. #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T2.2: I prefer to be called a "person with diabetes" because it forces people to remember I'm a person too. #HAchat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
T2.2 Yuppie Flu is one term that has been used instead of M.E. or Chronic Fatigue Syndrome. It's not a good term at all. #HAchat
jbbc
https://pbs.twimg.com/profile_images/651465254631817217/xto4WMid_normal.jpg
@wegohealth: T2.2 any words/phrases that you do not identify with? "sufferer" #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
RT @KatharineS84: T2.2: I'm not a fan of terms like "suffering from." Makes it seem like my life is constantly unbearable. #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
@KatharineS84 Oh, but sometimes I *was* "suffering from," _and_ my life was unbearable (re: pain control) #HAchat
Wyld_Celtica_V
https://pbs.twimg.com/profile_images/378800000686880858/1a0c0eefec2652b55a28eb4ebe584931_normal.jpeg
RT @KatharineS84: T2.2: I'm not a fan of terms like "suffering from." Makes it seem like my life is constantly unbearable. #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: Yes! RT @marandacarvell: terms like #spoonie help ppl connect and create an instant community of ppl who get you #HAchat
Dyverse_Steele
some people would rather hide their illness from everyone including themselves sometimes it takes a strong person to talk #hachat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
See this for the spoon theory http://t.co/CuXJkPR2 RT @lauriepna at marandacarvell what does "spoonie mean? #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
RT @wegohealth: Yes! RT @marandacarvell: terms like #spoonie help ppl connect and create an instant community of ppl who get you #hachat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
RT @TomKindlon: T2.2 Yuppie Flu is one term that has been used instead of M.E. or Chronic Fatigue Syndrome. Not a good term at all. #HAchat
Dyverse_Steele
i am a fan of everything as long as you keep talking about it through talking/being social comes awareness and spiritual healing #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Always great to re-share this! Thanks RT @CIRants See this for the spoon theory http://t.co/yomBqyGN #HAchat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
@wegohealth @LifeUnbound @KatharineS84 check out this awesome post about dx, treatment, and the words we use: http://t.co/Croes252 #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Let’s talk about how a diagnosis or label can influence how others see us. #HAchat
JonnayD
https://pbs.twimg.com/profile_images/1900179107/JTD_Logo_normal.gif
@TiffanyAndLupus I support ur cause. Although not dx w/the condition I know what its lk 4many who are. Love ur dedication&commitment #HaChat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
@MakeThisLookAwe Me too! But when someone is talking ab me, I don't want to hear "she suffers from cystic fibrosis." That's not me. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Topic 3: - How does a diagnosis play into how others see you? #HAchat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
Hi all, It's jules of whatthejules. sorry I am late #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
@mandylipka Thank you! This looks like a great read. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
Yes! RT @wegohealth: Let’s talk about how a diagnosis or label can influence how others see us. #HaChat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
For all your hashtag definition needs! http://t.co/llAB4fNK And for #spoonie see http://t.co/WxVEwuFK #HAchat
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
Agree, love this RT @wegohealth: Always great to re-share this! TY RT @CIRants See this for the spoon theory http://t.co/8VLZ3o9M #hachat
MrsTeepot
https://pbs.twimg.com/profile_images/423485030665437184/6LoYm0uq_normal.jpeg
RT @wegohealth: Let’s talk about how a diagnosis or label can influence how others see us. #HAchat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
RT @wegohealth: Topic 3: - How does a diagnosis play into how others see you? #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T3: lots of strangers see me as something to be pitied, or that I did something to deserve it, or some combination. #HAchat
Dyverse_Steele
T3 word stigma stigma stigma lawd knows we have a hard enough time dealing with us then we got to deal with others jeez lol #hachat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T3: Diagnosis just reminds people that I am unwell; sometimes that's all they see. People ask how my symptoms are, not 'how I am' #hachat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T3: My friends see me as a "dia-bad-ass" #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
RT @wegohealth: Topic 3: - How does a diagnosis play into how others see you? #HAchat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
<3 @KatharineS84: We refer to each other as cysters (females) & fibros (males). It makes it feel like more of a "club" than illness #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
T3 is often where our myth/misconceptions come into play... #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
My pain & reactions to it became legitimate RT @wegohealth: Topic 3: How does a diagnosis play into how others see you? #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
I LOVE this SO hard! #dsma RT @PurdueMocha T3: My friends see me as a "dia-bad-ass" #HaChat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T3: Not all conditions are visible however, and my symptoms such as balance issues can be misconstrued as being drunk #hachat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
For some people, diagnosis "justifies" my "odd" movements or actions. #HAchat
Dyverse_Steele
waves at Tiffany hey beautiful one #hachat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
@KatharineS84 Oh, absolutely... we need to be sensitive. I say suffering from pain, but surviving disease ^_^ #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T3: Post-diagnosis varies depending on the persons friends & family. Many have different reactions. Some good, some bad. #HaChat
MyPerog
https://pbs.twimg.com/profile_images/2663790440/20e6f23c0f4d9ceb20f5e13fc3539016_normal.jpeg
RT @TiffanyAndLupus: I LOVE this SO hard! #dsma RT @PurdueMocha T3: My friends see me as a "dia-bad-ass" #HaChat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
*swoops in for a big bear hug* :) RT @Dyverse_Steele: waves at Tiffany hey beautiful one #HaChat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
RT @MakeThisLookAwe: @KatharineS84 Oh, absolutely... we need to be sensitive. I say suffering from pain, but surviving disease ^_^ #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
Too cool not to pass on... RT: @PurdueMocha T3: My friends see me as a "dia-bad-ass" #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
@makethislookawe Yes! I like "surviving" or "thriving with." Has a much more positive spin on someone's overall quality of life. #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
If the perception of others isn't exactly what you'd like... T3.1 Have you ever confronted stereotypes/misconceptions directly? How? #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T3: My family are more sympathetic; all my symptoms are now accounted for and not caused by anxiety and am not imagining it #hachat
marandacarvell
https://pbs.twimg.com/profile_images/525984381555314689/P5urW53J_normal.jpeg
@wegohealth ppl are more accepting of my limitations now that i 'have' something #hachat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
T3: video: "Stuff People Say to M.E. sufferers" http://t.co/IqOZdilM (I didn't make it) #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: Topic 3: - How does a diagnosis play into how others see you? #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
at marandacarvell thanks for the awesome spoon description enlightening #HAchat
eatwiserx
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RT @tiffanyandlupus: I LOVE this SO hard! #dsma RT @PurdueMocha T3: My friends see me as a "dia-bad-ass" #HaChat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
@KatharineS84 "surviving" or "thriving with" - it gives value to the struggle and recognizes all the hard work :^D #HAchat
caitlin_cumming
https://pbs.twimg.com/profile_images/1778504499/n5319340_35763843_2512_normal.jpg
RT @TomKindlon: video: "Stuff People Say to M.E. sufferers" http://t.co/kOGTFXxp (I didn't make it) #HAchat #HaChat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T3: Some of my friends felt that my diagnosis made me "act" more sick. Pffft! They were in denial that my health was just declining. #HaChat
MrsTeepot
https://pbs.twimg.com/profile_images/423485030665437184/6LoYm0uq_normal.jpeg
RT @wegohealth: Always great to re-share this! Thanks RT @CIRants See this for the spoon theory http://t.co/yomBqyGN #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @TomKindlon T3: video: "Stuff People Say to M.E. sufferers" http://t.co/A7yVOiRF (I didn't make it) #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
T3: Accomodations started being made to help me. I don't have to fight as much anymore for advocacy and help. #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
@MakeThisLookAwe Exactly! Gives us credit rather than pity :) #HAchat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
T3: this is why I like #chronicallyawesome so much. We are awesome! #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T3: Some feel that when you speak about your illness/diagnosis repeatedly that you're letting your disease take over.... #HaChat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T3.1: Yeah, I've tried to give information and different resources, but people stuck in their ways don't listen very well. #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
RT @julianna12369: T3: this is why I like #chronicallyawesome so much. We are awesome! #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
AMEN!! RT @KatharineS84: @MakeThisLookAwe Exactly! Gives us credit rather than pity :) #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
T3 a deficit people are supportive at the onset than drop the ball and never talk about it again #HAchat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T3.1: I confront stereotypes by living my life w/ #cysticfibrosis in a positive way. I share my story & answer any & all questions. #HAchat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
RT @LifeUnbound: T3: Accomodations started being made to help me. I don't have to fight as much anymore for advocacy and help. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T3: Fellow patients had different reactions to my speaking out about lupus. More community, comfort, understanding, and empowerment. #HaChat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
!!!! THIS RT @MakeThisLookAwe: AMEN!! RT @KatharineS84: @MakeThisLookAwe Exactly! Gives us credit rather than pity :) #HaChat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
For our last topic let’s talk about how we can help others come to terms with themselves after diagnosis or new health challenges. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
T4: What tips do you have for someone who is coming to terms with themselves as a patient (pre or post-diagnosis)? #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
T3.1 I am straightforward and as informative as possible. Mostly it's ignorance & I try to correct it. #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
T3: People who do not have relatives or friends w/ chronic illness sometimes undermine the amount of pain i'm capable of feeling. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T3: Learning to accept that some won't handle our diagnosis well no matter how much we try to educate them. This doesn't reflect us! #HaChat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @MakeThisLookAwe: AMEN!! RT @KatharineS84: @MakeThisLookAwe Exactly! Gives us credit rather than pity :) #HAchat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
RT @wegohealth: let’s talk about how we can help others come to terms with themselves after diagnosis or new health challenges. #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
Yes! RT RT @MakeThisLookAwe: AMEN!! RT @KatharineS84: @MakeThisLookAwe Exactly! Gives us credit rather than pity :) #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: T4: What tips do you have for someone who is coming to terms with themselves as a patient (pre or post-diagnosis)? #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @CIRants: T3.1 I am straightforward and as informative as possible. Mostly its ignorance & I try to correct it. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
@LifeUnbound Yes, some will be insensitive due to ignorance. I try not to think ill of them....it's hard though <3 #HaChat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
T4: Take it one day at a time. Your dx doesn't define you, you define your dx. And as always, be your own advocate! #HAchat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
T4: I am in the process of making FAQ's, White Papers and TIPS that are more from a patient perspective, upbeat and hopeful #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
T4 accept and come to terms with it ourself than b activist and talk about it.i plan to amend my works best practice in managing it #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
RT @wegohealth: T4: What tips do you have for someone who is coming to terms with themselves as a patient (pre or post-diagnosis)? #HaChat
mandylipka
https://pbs.twimg.com/profile_images/590270944133812224/rFNh9jPR_normal.jpg
@julianna12369 great to hear - would love to see final product #HAchat
PurdueMocha
https://pbs.twimg.com/profile_images/3445211103/7ed2b21af7a7f34e85da1750f5b2f51f_normal.jpeg
T4: You are not alone. It is OK to have all these emotions. It's OK to be you. #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @mandylipka: T4: Take it one day at a time. Your dx doesnt define you, you define your dx. And as always, be your own advocate! #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
T4: It's not your fault. Remember that. #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T4: I would say after diagnosis, people should read blogs of other patients to see the 'real story' instead of some horror stories #hachat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
T4: I think that someone's first intro to their dx should be hopeful, not frightening #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
RT @wegohealth: T4: What tips do you have for someone who is coming to terms with themselves as a patient (pre or post-diagnosis)? #HAchat
blairnboca
https://pbs.twimg.com/profile_images/378800000423835546/8e9b0d50a781081fd6df3345f7f57ea6_normal.jpeg
@wegohealth @Dyverse_Steele : I agree #HAchat #fibromyalgia
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Love to read it! MT @julianna12369: T4: Im in the process of making FAQs, White Papers &TIPS from a pt perspective, upbeat & hopeful #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
T4: Do your own research and get informed so you don't believe the myths. #HAchat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
Me too! RT @mandylipka: @julianna12369 great to hear - would love to see final product #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @LifeUnbound: T4: Its not your fault. Remember that. #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T4: Also find some great support groups or online community for invaluable support, advice and to meet others like yourself #hachat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
T4: so my first tip is, don't go looking for all the worst case info, look for those of us who live well daily with our DX #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Agree! MT @serenebutterfly: T4: After diagnosis, read blogs of other patients to see the real story instead of some horror stories #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
RT @julianna12369: T4: I think that someones first intro to their dx should be hopeful, not frightening #hachat
tomkindlon
https://pbs.twimg.com/profile_images/1635242695/e9d2af06-e3d1-4276-a4b4-9c94c851f99c_normal.png
T4: (Tips for "new" patients) "Things work out best for those who make the best out of how things work out" #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Yes! RT @PurdueMocha: T4: You are not alone. It is OK to have all these emotions. Its OK to be you. #HAchat
lauriepna
https://pbs.twimg.com/profile_images/748890125204066304/7EFl9zVM_normal.jpg
thanks for the awesome input all #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T4: Acceptance of your illness is tough but it is NOT impossible. Leaving the land of denial brings relief & power. It's up to us. #HaChat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
You can bet I will make a big deal out of it when it's done! RT @CIRants: Me too! RT @mandylipka: - would love to see final product #HAchat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: Yes! RT @PurdueMocha: T4: You are not alone. It is OK to have all these emotions. Its OK to be you. #HAchat
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
Yes RT @serenebutterfly: RT @julianna12369: T4: I think that someones first intro to their dx should be hopeful, not frightening #hachat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
Great: MT @julianna12369: T4: First tip is, dont go looking for worst case info, look for those of us who live well daily w our DX #HAchat
makethislookawe
https://pbs.twimg.com/profile_images/1927681872/2000px-718smiley.svg_normal.png
T4: Do not take this personally. This is not punishment. No one deserves to get sick. It just happens sometimes. To more than most! #HAchat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
YES RT @wegohealth: Agree! MT @serenebutterfly:T4: read blogs of other patients to see the real story instead of some horror stories #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
RT @TomKindlon T4: "Things work out best for those who make the best out of how things work out" #HAchat
serenebutterfly
https://pbs.twimg.com/profile_images/654692355929300992/eZsEmrb0_normal.jpg
T4: For those trying to get a diagnosis, I would say hang in there - I had to wait around 17/18 years for one but got one in the end #hachat
cirants
https://pbs.twimg.com/profile_images/1490617589/Twitter_normal.JPG
MT @julianna12369: T4: First tip is, dont go looking for worst case info, look for those of us who live well daily w our DX #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T4: Understand that there is a dual side to all things. There IS laughter to be had even while we endure the tears. #HaChat
lifeunbound
https://pbs.twimg.com/profile_images/2900274738/b167481a51543b013b2a8f6a6ff8694a_normal.png
RT @wegohealth: RT @TomKindlon T4: "Things work out best for those who make the best out of how things work out" #HAchat
pamressler
https://pbs.twimg.com/profile_images/2780612519/72b0fec71d3b61bd552e6dbf5f52b020_normal.jpeg
T4 Are there ways that we, in healthcare, can support newly diagnosed by connecting them with others? #hachat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T4: To go easy on yourself. Any diagnosis that alters your life takes time to adjust to. Talk about it. Ask for help. #HAchat
julianna12369
https://pbs.twimg.com/profile_images/738944429285740546/ljk7YBkV_normal.jpg
T4: TIP: surround yourself with comfort, not negativity. When they get you down, walk away... WALK AWAY #HAchat
wegohealth
https://pbs.twimg.com/profile_images/2793120407/58e696017429723d9c397699835dacea_normal.png
And T4.1: How can we, as Health Activists, work together to make newly patients feel comfortable no matter who/where they are? #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
LOVE THIS, so TRUE!!! ~> RT @TomKindlon T4: "Things work out best for those who make the best out of how things work out" #HaChat
katharinescriv
https://pbs.twimg.com/profile_images/717872635946909696/Q9kmaEvD_normal.jpg
T4: Remember that each patient is different. You CAN defy odds. And that optimism and hope are your best friends. #HAchat
tiffanyandlupus
https://pbs.twimg.com/profile_images/750626239480750081/7Hj1irFV_normal.jpg
T4: I like to encourage the newly diagnosed to reach out & speak out with the chronic 'veterans' in the patient community :) #HaChat