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June 29, 2016
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Answer Summary

Members connected deeply over the frustration of invisible pain, with many wishing others could physically see their suffering to validate... Read more

Members connected deeply over the frustration of invisible pain, with many wishing others could physically see their suffering to validate experiences that are often dismissed or misunderstood. Several members shared how chronic pain affects daily interactions, from having to refuse hugs that hurt too much to dealing with dismissive comments like "it's all in your head" or watching others assume they're fine when pain is actually overwhelming. A recurring theme was the exhausting work of managing both physical pain and others' perceptions, with members bonding through humor about being "covered in red" while also expressing real longing for understanding from friends, family, doctors, and coworkers who cannot see what they endure.

A MyFibroTeam Member

Ha! Ha! Yes, that would be very useul...we would sure look funny though :-)

July 4, 2016
A MyFibroTeam Member

Not sure I'd want to see all those spots either. Rather have people think I'm doing ok then be covered with red from head to foot. :) Stop worrying about what people think. They don't understand so if you don't expect so much you won't be hurt as much. I assume everyone will think I'm fine and once in a while someone will notice that I'm in pain and surprise me. I think my face shows it more every year. When I get to the point that the pain is so bad that I feel like passing out, people are rushing to get me in a chair. I can't walk without a limp anymore either so that's a dead giveaway that all is not well.

June 29, 2016
A MyFibroTeam Member

That would solve a lot of people's doubting but I agree with @A MyFibroTeam Member, I would be red almost all over most of the time

July 4, 2016
A MyFibroTeam Member

I would be like Barney the purple dinosour but in Red

June 30, 2016
A MyFibroTeam Member

I never discussed my fibro with my coworkers but just told them "I am not a hugger"... The worst was when the HR Manager just came up behind me, and with no warning, started to give me a back rub....My arm immediately came back to push her away. I know it hurt her feelings as I tried to explain that it was a reaction to Domestic Violence years ago. Looking back I should have been open about "why" I was not a hugger. But --- would I have been treated the same???

June 30, 2016

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