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A MyFibroTeam Member asked a question 💭
Birmingham, UK

Ill

June 2, 2018
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Answer Summary

Members shared the challenge of explaining invisible chronic illness to others, with many comparing their daily pain to severe injuries like... Read more

Members shared the challenge of explaining invisible chronic illness to others, with many comparing their daily pain to severe injuries like slipped discs, being trampled by livestock, or having constant flu-like symptoms that never fully go away. Several members described practical tools they use to communicate their reality, including the spoon theory, blue heart badges that say 'not every illness is visible,' car stickers, and simply telling people to Google fibromyalgia rather than repeatedly explaining themselves. A recurring theme was the frustration of looking healthy while suffering immensely, the exhaustion of justifying their limitations to skeptical family members or strangers, and the relief of having supportive partners who truly witness and validate their daily struggle.

A MyFibroTeam Member

Ive been doing it so long now its beginning to wear thin constantly explaining myself. The old “you look ok” and “ but you look so healthy “ replies irritate me now. My own uncle who i havent seen in a while had no idea how bad it had got, he just stood there open mouthed. He kept repeating “i cant believe it “ over and over like i had died or something. Those who matter know and as far as im concerned now i dont see why i should explain myself.

June 2, 2018
A MyFibroTeam Member

Fibro2012, I have the blue heart badge that says 'not every illness is visible' and I also have stickers in my car that say the same.
If anyone says anything I just point to them. It usually shuts them up, especially when I park in the disabled parking area.
I often find that if I'm using my walking stick no one says anything or even looks bothered, but if don't need my stick one day, you can guarantee someone will either make a comment or glare at me as if I'm committing a crime!
That's when I draw their attention to the 'not every illness is visible' sticker! It works wonders! 😊

June 3, 2018
A MyFibroTeam Member

People who don't need to know...I tell them nothing. Then there are my regular friends and I tell.them as much as they are willing to hear which is sometimes little. My Mom knows the most because I live with and take care of her. I explained that I felt as if there were two strong animals in me pulling me apart. I went into a bit more detail. She got it. I could tell by the look in her eyes and her acceptance of me. It goes both ways. I don't believe anyone will ever understand the strength it takes to live with this. You.are all incredible.

June 2, 2018
A MyFibroTeam Member

can;t say I've had too many people to explain it to only my hubby & my doctor. I just explained it to my hubby by saying think how much pain u were in when u slipped a disc, then triple that & u might come somewhere near where I am everyday. Also that the pain never ever goes there is always some residue of pain even after taking all the meds prescribed for me, not one day goes by with out me being in some type of pain whether it's severe or not. Hope that helps xx

June 2, 2018
A MyFibroTeam Member

Sometimes i cant even explain it to myself so ive given up trying to explain to.anyone else.

June 5, 2018

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