Fibro Feelings – If only Twitter had been There
Happy St. Patrick’s Day!
Recently, I was thinking about how the first few years of my fibromyalgia diagnosis would’ve been different had Twitter existed then. Although I was a busy college student, I have a feeling that I might have become addicted to obsessed with Twitter. I think I would have spent much of my free time reading fibromyalgia articles that people tweeted, but maybe even more time picking the brains of other people with fibromyalgia. I would’ve had to restrain myself from asking people question after question. I’d have asked, “How do you manage your fibromyalgia?” “What are the biggest changes you’ve needed to make in your life? “What medicines do you take?” “What other overlapping conditions do you have?” and on and on and on. Now that I think about it, I might have annoyed some people on Twitter! =)
Twitter also would have given me a sense of inclusion to a new group of people in my life, those living with fibromyalgia and other chronic conditions. Although bittersweet, I think I would’ve preferred that, to feeling like I’d been diagnosed with something that NOBODY knew what it was, how it worked or anybody else who had it. Twitter would have helped me feel like I was on a path to somewhere, being lead by some experienced guides. Opposed to feeling like I was just kinda strolling along a dark trail, without a compass, hoping I was going in the right direction.
Alas, I joined Twitter about a year ago, 9 1/2 years after getting fibromyalgia. Of course, even now Twitter is a valuable resource to me. I will be writing a whole other post about social media, in the future. If you’d like to follow me on Twitter, you can find me @FeliciaFibro.
Has Twitter helped you through a diagnosis?
My Twitter page
Posted: March 17th, 2011 under Fibro Feelings.
Tags: My Philosophy, Twitter
Comments
Comment from Ashley
Time March 17, 2011 at 12:05 pm
While Twitter hasn’t helped me through a diagnosis, as I’ve been dealing with a chronic illness since early childhood, joining I feel less alone. It’s wonderful to have a virtual support system and to know you are not alone.
[Reply]
Pingback from Chronic Illness Support | Searching for Health
Time March 17, 2011 at 1:28 pm
[...] Fibro Feelings – If only Twitter had been there via Felicia Fibro [...]
Comment from Karen
Time March 18, 2011 at 5:47 pm
The internet and social networks have been invaluable to me to getting support and information to coping with my fibromyalgia diagnosis as well as my interstitial cystitis diagnosis. I don’t know how I would have dealt with any of this without the support and information I got from talking with other people with these disorders. Other sufferers can provide tips and tricks to dealing with pain and symptoms that doctors just can’t offer.
Karen recently posted: FIBRO FRIDAY! – Youre Hot then Youre Cold
[Reply]
Felicia Fibro Reply:
March 18th, 2011 at 6:23 pm
I think the tips and tricks from those living with a condition are one of the most, if not the most, valuable part. Thanks for sharing your experiences, Karen.
[Reply]
Comment from amynluv
Time March 19, 2011 at 10:54 am
I got diagnosed with fibro back in 1997, so when I joined twitter about a year and a half ago I was in the same position as you. I’d already had the syndrome for many years but found a lot of support on twitter and facebook. I did however, get my Ehlers-Danlos Syndrome diagnosis and soon after I felt as if I was taken under the wing of those who had lived with EDS for a long time and knew more what to expect. This happened on both facebook and twitter, as well. I think that helped me a lot and still does. With something as complex as fibro or EDS it really helps to have an online community who really does understand what you are going through, who can suggest tips, and can give and receive comforting words when it feels like these illnesses have trampled us. Sometimes helping another fibromite or EDSer online helps us, too, and I’m sure it works the same for others, too.
amynluv recently posted: Wow- I didnt know going outside was the cure to EDS!
[Reply]
Felicia Fibro Reply:
March 19th, 2011 at 1:52 pm
The comparison of receiving 1 diagnosis before social media and 1 after is very interesting. You wrote out your experiences beautifully. Thanks, Amy!
[Reply]
Felicia Fibro Reply:
March 17th, 2011 at 12:09 pm
Exactly! That is part of what I’ll be writing about in my upcoming social media post.
[Reply]