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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.
A MyFibroTeam Member asked a question 💭
Ottawa, ON

Are you spreading the word through social media? I was debating whether or not to post something on my personal Facebook page, but I decided that yes, for myself and all those suffering I would post some info. Before I was diagnosed I had not heard of it. I am using today as an opportunity to try and get the word out.

May 12, 2016
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Answer Summary

Members discussed whether to share about fibromyalgia on social media for Awareness Day, with many expressing hesitation due to concerns about... Read more

Members discussed whether to share about fibromyalgia on social media for Awareness Day, with many expressing hesitation due to concerns about workplace discrimination, social stigma, or being dismissed by friends who don't understand the invisible nature of the illness. Several members shared their personal approaches, from posting supportive content without disclosing their own diagnosis to openly educating coworkers and hanging awareness materials in their workspace, despite the risk of being judged or losing relationships. A recurring theme was the painful isolation of having an often-misunderstood condition, the frustration of losing friendships over limitations others perceive as laziness, and the determination to raise awareness even when met with indifference or disbelief.

A MyFibroTeam Member

I don't want to sound bitchy but I think everyone should know I have it. So many are uneducated, and they can see, through me, that it's real. I even have something hanging in my cube about it at work. I'm working hard to educate myself so I can educate others. I don't care about others' opinion of it being fake. Ignorance is bliss or just ridiculous.

May 13, 2016
A MyFibroTeam Member

I would be careful about saying anything about it with people from work on your account. You don't want that getting around. Work can be strange sometimes and if higher up people hear about it and know you have it unfortunately they will try and get rid of you. This has been my experience.

May 13, 2016
A MyFibroTeam Member

I am going to post something. Fibromyalgia deserves the recognition that other diseases get.

May 12, 2016
A MyFibroTeam Member

I share info I see on Facebook and posts about not seeing that someone is I'll on the outside, but doesn't mean they're well, etc.

May 13, 2016
A MyFibroTeam Member

Good for you, @A MyFibroTeam Member ! I have lost a few friends in the past 3 years due to them not understanding why I was not able to meet up at night anymore after work. They really did not get that it was too much. It seems to me that some people feel I am faking or something. I have yet to figure out what benefit it would bring to me. I am pretty much isolated and alone most of the time. I used to love dinner & movie dates with my girlfriends or meeting up for pedicures. They have know me for many years before my illness and knew me as a hyper active bubbly woman. Why do they think I have changed if not for a horrible illness? I really don't get it, but if they'd rather think I'm a lazy cow all of a sudden then so be it. Not worth the energy thinking about it, but it is dissapointing.

May 13, 2016

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