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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

When you try to explain the symptoms you often get labelled negative as sheer willpower, faith and manifestation ect. should be enough to have a steady performance=good days in general?

How open are you to meeting people and talk about fibromyalgia? I specifically mean people that you most probably cooperate, collaborate or work together in the future.

January 19 (edited)
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Answer Summary

Members shared their cautious experiences navigating disclosure of fibromyalgia to new people, with many reporting that they wait to build... Read more

Members shared their cautious experiences navigating disclosure of fibromyalgia to new people, with many reporting that they wait to build trust before sharing health details due to fear of judgment, discrimination, or being labeled as negative or weak. Several members emphasized the importance of being selective about what they share and with whom, noting that they've experienced people measuring them against healthy standards, feeling uncomfortable with chronic illness, or even facing workplace discrimination after disclosure. A recurring theme was the emotional vulnerability of discussing fibromyalgia and the wisdom of letting people get to know you first, while also recognizing that you cannot control others' judgments but can control what you choose to share.

A MyFibroTeam Member

I take a different approach with doctors. I will tell them and, if I see evidence that I am not being taken seriously, I find another doctor.

January 21
A MyFibroTeam Member

I don’t like to make assumptions that people will handle it poorly.
However, I also do not share my health or other personal details until trust is built- work relationships or otherwise.

That being said I also have family members and longtime friends that I don’t discuss certain things with. It’s not personal, sometimes it is just recognizing and accepting limitations. 🤷‍♀️💛

Sometimes it’s circumstantial. Do you find yourself in a position where you feel you need to explain?

January 20 (edited)
A MyFibroTeam Member

I don’t talk about it until I get to know them a bit and they get to know me a little

January 19
A MyFibroTeam Member

I've found that most times people seem deeply uncomfortable with the idea of any kind of chronic illness/disability.

January 19
A MyFibroTeam Member

Oh good! I wouldn’t want to come off poorly and sometimes worry that I do. 💛😅

I guess in other words my experiences have lead me to be more selective or wait til some rapport is built. Not just with health topics either.
I’ve had both bad and good experiences disclosing this information. But ultimately decided to let someone get to know me first and vice versa before I make that decision.

I have no control over someone’s judgments of me, but I do over what I share. Talking about fibromyalgia and health conditions, especially in the workplace, makes me feel vulnerable. And while I think it’s brave to be vulnerable, for me, it feels wise to have trust in place first.

January 20 (edited)

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