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A MyFibroTeam Member asked a question 💭
Lexington, KY

My family says when I start talking about my fibromyalgia that it is all about me to make me shut up!! I feel like crying the way my family, friends,and even the medical field treàts me. Isn't it enough that you have to live with this illness? Sad to say though this is when you actually find out who really cares and loves you. I feel so alone.

July 6, 2024
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Answer Summary

Members connected deeply over the painful loneliness of living with fibromyalgia, sharing how family, friends, and even doctors often dismiss... Read more

Members connected deeply over the painful loneliness of living with fibromyalgia, sharing how family, friends, and even doctors often dismiss their struggles as attention-seeking or laziness, leaving them feeling isolated and misunderstood. Several members offered practical wisdom, including learning to give short answers when asked about their health, arming themselves with research to defend the legitimacy of their pain, and finding strength in online communities when in-person support falls short. A recurring theme was the exhausting balance of wanting to be heard without overwhelming others, the loss of friendships and family closeness due to invisible illness, and the determination to keep living fully despite constant pain and a world that cannot see what they endure.

A MyFibroTeam Member

I understand what people are saying but I am so disappointed in the reaction of people towards those with fibro. The lack of interest from close family and friends I think is harsh. The illness is the prominent thing in our lives. I can understand people not wanting constant repetition. I listen to the detail of other people’s lives with interest. Some people only talk about their employment, their children, their homes, sport, their forthcoming wedding, babies, I have to look at holiday pictures I could go on. I have no interest in sport but find out snippets from Google to join in conversations when my brother in laws visit. I understand what your saying Anne and why, but I think it is sad we have to do this. Many old people have little in their lives and talk about mundane things like shopping, should they be ignored? The way we are treated is a reflection of how insular people in general are, and this is sad. Millions of lonely people because a neighbour won’t look in listen and talk. Viva the revolution.

July 6, 2024 (edited)
A MyFibroTeam Member

This is for All of us here🌷💜🌷…We give each other strength😊🌷🌷💜🌷🌷…..

July 23, 2024
A MyFibroTeam Member
July 6, 2024
A MyFibroTeam Member

I like what @A MyFibroTeam Member said. They might be buttheads 😝

But seriously, yes. It’s a lonely illness. I think it would be easier if it was more visible somehow, like if it made our skin turn bright green or something, so everyone could *see* what’s going on. And who can just zip it when they’re in constant pain? Not me, for sure.

I do understand how constant talk about the same things can get boring or annoying, but I wish people would cut us more slack. We have an awful lot on our plates!

July 6, 2024
A MyFibroTeam Member

Nice one Donna. Tell them to f———k off.

July 7, 2024

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