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I feel like as it’s not easily understood by others people can think you’re a hypochondriac. How do you guys explain it when people ask? There are so many factors that I suffer from that I find it really hard to explain without sounding like a drama queen to non-sufferers.
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Members connected deeply over feeling judged or dismissed when explaining fibromyalgia to others, with many sharing that invisible symptoms... Read more
I give them the book " Loving those with Fibro" and or the movie "Cake". It explains a great deal and shows in detail what it is live living with Fibromyalgia!
On a roll @A MyFibroTeam Member. Yep. Yep. In fact, I just tell people I have a diagnosed central nervous system disorder and give them a broad definition that it impacts every facet of what the central nervous system controls. They usually don’t ask much beyond that. But to me it sounds more legit than saying fibro since people judge that. Fibro is a part of centralized sensitization which is a dysfunction of the CNS so i feel fine saying that but most of the time I just say I have a disability and don’t want to discuss further
My sister is a nurse and she was probably the person I felt let me down the most. She didn't understand my problem and didn't try too. I ended up not speaking to her, I cut her out of my life after a very bad episode where I ws literally called a liar, lazy and other things by her husband, son and daughter, after which she questioned me and doubted me. She actually said she felt it unfair that I was entitled to some welfare (her being an oncology nurse) when I wasn't as badly off as any cancer patient. There were times when I wished for the release of a terminal illness, people underestimate how hard it is living for a long time with a chronic condition. Besides the fibro I also have syringomyelia, severe arthritis (I'm waiting for a hip replacement and an operation on my hand) and I have NASH (Non Alocoholic Steatohepatitis) which is advanced liver disease, I was close to cirrhosis. I didn't (and still don't) want loads of sympathy, just some understanding. I know cancer is a terrible illness but fibro isn't exactly a walk in the park either!! It robbed me of my job, my hobbies, friends and family, self respect and for a time I honestly felt like I'd be better off dead.
I've found the people who were closest to me where the worst for being judgemental and ironically fibro taught me things,like not to be judgemental about others, because you can't see an illness doesn't mean there isn't one. It also taught me to be grateful for the small things, like a pain free day, a good nights sleep and the energy (on a very good day) to play tag with my son
It’s great to see all your thoughts and approaches on sharing with with others, there’s a few great ideas, thank you xxx
I'm right there with you on that one. So over those comments from others.
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