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March 7
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Members shared mixed feelings about Lady Gaga representing fibromyalgia, with many acknowledging that while her visibility helps raise... Read more

Members shared mixed feelings about Lady Gaga representing fibromyalgia, with many acknowledging that while her visibility helps raise awareness, her wealth and resources make her experience hard to relate to for many living with the condition. Several members described real-world consequences, like being told by others that they cannot be that sick if Gaga can tour and perform, which added to feelings of being dismissed or misunderstood. A recurring theme was that fibromyalgia affects everyone differently, and many felt a more relatable spokesperson or clearer messaging about the wide range of severity could better reflect the community's true experiences.

A MyFibroTeam Member

I don’t know, I think we have to be careful of thinking like this. No disrespect intended. I understand you may trying to vent and I certainly believe you are entitled to your feelings and opinions. 💛

I don’t know anything about LGaga and what she does or doesn’t do, how often she tours, how hard she works to manage her disease- none of it.
But I do know we all have different capacities and are at different places, and we go through different seasons.

I’ve seen people make the comparison that if you are able to work you must not be sick or not as sick as them.
And to me that’s kind of more of the same.

I don’t think it serves us to compare our suffering to starving children in war riddled countries, anymore than it does to those we assume are not as bad off or more advantaged than us.

The only people who are choosing to see Gaga as what FMS looks like are the same people who make sweeping generalizations, because that’s what it is.
And those are rarely, if ever, fair or accurate.

I see you Arleen and Lore- I’m sorry if you feel others are comparing you to someone who appears to be doing well.
💛💛💛

March 8 (edited)
A MyFibroTeam Member

As we all know, each of us handles this very differently. I, myself, work full time in a more active position. Anyone looking at me would never know what is going on, but the symptoms are there. Many of us learn to be very good at hiding it. What no one sees is how I absolutely crash when I get home, how I have my husband rub my aching back but get mad at him when he pushes too hard, how my family hardly gets any of my time anymore because I spend a lot of my weekends resting and how internally I battle every day with trying to keep my attitude as upbeat as I possibly can. When it comes to a celebrity, we only see a fraction of their lives. We see what the media wants us to see, or what their handlers want us to see. There are likely private struggles that we know nothing about. We all say that we don’t want people judging us because we look “OK” on the outside. Perhaps we should afford Lady Gaga the same courtesy.

March 12
A MyFibroTeam Member

I hear you @A MyFibroTeam Member
You aren’t alone in how you think about that . A lot of people have voiced the same concerns you have. It always rubs me the wrong way too. I really don’t think she’s the right role model for fibromyalgia. While I’m glad that she’s making fibromyalgia visible, she has a lot of money and able to spend it on things that we cannot. Plus all of her personal trainers and staff, yada yada yada.
There is also the extreme workouts of her exercise ,and training for her performances.
I watched her piece on Netflix, several years ago. You can see her suffering on there. But for the rest of us, it’s unimaginable to be able to do the extent of her workouts. It makes the rest of us look like we’re lazy, and making excuses for our pain. Really makes us look bad. We need a better role model for fibromyalgia .

March 8 (edited)
A MyFibroTeam Member

@A MyFibroTeam Member Agreed. The struggle is real….It’s like comparing apples to oranges

March 8
A MyFibroTeam Member

Actually, I’m glad she has spoken out as it helps get the word out. I think people know that she has lots of money to help her, which most people don’t. I’d rather someone spoke up than no one. I agree that most of us don’t look her…but I don’t know how to change that. Good luck to anyone who can do that!

March 11

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