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18 Things People With Fibromyalgia Want to Post on Facebook, but Don't

The most helpful emails in health
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Sometimes it may seem like your friends are using Facebook as a “highlight reel,” only showing the best parts of their lives. So it’s understandable that if you have fibromyalgia, you may not always share the difficult truths about what your days are like. It can be hard to share when you’re not sure if you’ll get the supportive responses you hoped for.

To reveal the important truths people should know about their loved ones with fibromyalgia, we asked our Mighty community to share a post they want to write on Facebook, but don’t. Even if those with fibromyalgia “seem fine” on the outside, these are the challenges they may be dealing with behind the scenes. Friends, reach out and let them know you support them.

Here’s what the community told us:

1. “Please stop comparing me to other ill people. I can’t handle the stress of not feeling like I’m ‘sick’ enough to be important or noticed for my illness. I’m constantly apologizing for an illness that isn’t my fault, and I shouldn’t have to.”

2. “I’m tired! I’m tired of being sick, I’m tired of being in pain, I’m tired of feeling like shit, I’m tired of feeling guilty, I’m tired of not being normal, I’m tired of doctor’s visits, I’m tired of blood work, I’m tired of ‘your test came back normal,’ I’m tired of ‘try this medication,’ I’m tired of side effects, I’m tired of not feeling better! I’m just tired!”

3. “I barely talk about it. I’m in pain 24/7. There is no moment that I’m not in pain. If you see a post where I’m saying I’m having an awesome day and I’m playing in the garden with the rabbits – I’m in pain.  If I’m posting a picture of my dog – I’m in pain. If I’m just sharing a link – I’m in pain. I’m likely posting as normal like I am now, but in reality I am curled up on the sofa feeling pain in so many places it blends to a blur.”

4. “I’m exhausted. A lot of people don’t realize the difference between constant exhaustion and just being tired. Also, [I don’t post] anything about fibromyalgia really because some people still don’t believe it’s a real illness.”

5. “I actually am trying to be better about being honest with how I really feel. But the truth is I can’t even put it into words when I try. I feel like saying ‘I hurt’ or ‘I’m tired’ just don’t cut it. The honest truth is lately every inch of my body hurts. Even trying to give me a back rub is painful and makes me want to cry. I feel like when I say ‘I hurt’ it sounds too much like what everyone feels, everyone has aches and pains, but this is so much more than just a little soreness.”

6. “I know I’m supposed to lose weight and move more, but sometimes I’m just in too much pain and doing anything hurts, but no one understands. I appreciate your advice, but just walk a day in my shoes.”

7. “People need to stop trying to solve my illness. We are doing everything we can. I have great doctors. We don’t even have a clear cause and etiology of fibro. There are currently not many solutions.”

8.I’m constantly asking myself, ‘Would a future employer be able to see this post and my acknowledgement of having a disability and use that against hiring me?’ Though it’s illegal, they can always use ‘alternative facts’ or reasons to not hire but there may be some truth in [that they didn’t] hire someone with a disability.”

9. “[I don’t post] the fact that I have it in the first place. I’ve gotten all of the typical hurtful responses to fibro from the people closest to me who I have told, who misunderstand or underestimate my illness, so I know I will get those kinds of responses even worse from Facebook friends. So I don’t even share about it on social media. I think at this point I would rather just keep it to myself than continue to bear that frustration.”

10. “I’m tired of being interrogated when I call my doctor to refill my pain medicine. Even though I only call when I’m desperate, even though I’ve agreed to a lower dose, I am treated as if I’m drug seeking! I shouldn’t have to fight to keep my pain manageable enough so I can live my life.”

11. “Although I look like a regular 25-year-old, I’m not. Don’t judge me when I squat in the supermarket to relieve my back pain and make sure I don’t faint from exhaustion. Don’t judge me when I complain about pain — if I’m complaining its really bad since I have it 24/7. Don’t judge me for pulling out of an evening out last-minute. Don’t judge me for struggling to find work because I have to be honest and tell people about my problems. I guess overall I just want people to understand there is a real problem and to let me deal with it the best I can.”

12. “I wish healthy people would stop asking me to take this, take that, push myself on and on! After all these years with fibro and chronic severe back pain, under three specialists’ care, believe me we’ve tried everything!”

13. “I am 6 feet tall, 280 pounds — when I tell you that you are hurting me when you are just resting your hand and arm on my shoulder, it hurts and I am not a big baby.”

14. “I feel guilty for having to explain to my girls why I’m just too exhausted to cook tea or do something other than watch movies. I miss out on friendships and have to cancel plans. I would love to go to work and actually have a life. No one would choose to live the way we do.”

15. “I’m not making it up. I really want to go out and be with friends and family. I miss having fun.”

16. “Some days there is just no being positive. I’m not swimming in my own self-pity, it’s just that this sucks. There is no good part. There is no silver lining or lesson. There is no reason for this. It is just how things are. This is not how I imagined my life panning out. But now that this is my normal, I’m doing my best. Some days, that means not being positive and expressing how I really feel.”

17. “Pain takes over my life and limits my ability to do day-to-day tasks. When I post something like this and then go about doing my tasks, people assume I am making a big deal of the pain and that it is a natural progression of the human body, like menopause or aging.”

18. “I had such a good time today… now I will feel the effects for the next week or so.”

Originally published: March 17, 2017
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