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myfibroteam is awesome, but wondering if you post anything or talk about your fibromyalgia on your Facebook feed also? If so, what responses do you generally get?
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Members shared deeply divided perspectives on discussing fibromyalgia on Facebook, with many expressing hurt over the silence, dismissive... Read more
I don’t have Facebook but I generally don’t talk about it anywhere but right here on this forum for the biggest part, It is scarcely talked about with my family and a few close friends.
@A MyFibroTeam Member @A MyFibroTeam Member - I don't really post much of anything about my Fibro on FB, except perhaps an occasional graphic about it - but almost never about myself having Fibro or my symptoms. I'm a little freaked out about what people will think or infer from my condition. That's why I'm glad I found this place, where I can talk about it among people who completely understand.
I am surprised, though, that MyFibroTeam doesn't have an option in the Profile for you to link to your FB page, if you so chose to or wanted to do that.
I'm certainly no opposed to people here looking me up on Facebook and Friend Requesting me there, which is one reason why I use my real/full name. If you want to 'Friend' me on Facebook that's perfectly fine with me. One one hand I'm surprised when people don't use their real (or full) name here, on the other hand I completely understand.
Ultimately - I tend to shy away from posting things about my Fibro on Facebook... but I would never say never.
I post stuff on FB as all my friends and family knows. If people don’t understand it’s about time they do as it could happen to them or a family member. There definitely needs to be more awareness about this disease. I guess sometimes it takes a singer or movie star to bring Awareness. Thank you Lady Gaga❤️
Not really, I talk more about adults with late diagnoses of Asperger's and Dyspraxia, only because the doctors believe that these things caused the Fibro and now they feed each other. I could have dodged the Fibro bullet if I'd had help with the ASD at a young age and not spent years like a coiled spring waiting for the next crisis to hit, which they did pretty regularly. The nervous system can only take so much as I found out in 2013 when I had a breakdown and the vague symptoms of fatigue and a bit of pain I'd had for years suddenly worsened. A mental health nurse spotted both the ASD and the Fibro within an hour of meeting me!
I never mention my fibro on social media. I try not to mention it in person anymore either. I usually get a looks that make me feel as though either they could care less or a feeling they think I'm lying. It always makes me uncomfortable so I quit talking about it.
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