When you live with a chronic condition like fibromyalgia, oftentimes there can be some frustrating, undesirable and “embarrassing” symptoms that accompany your illness. Although there’s no reason to feel ashamed of any symptoms or side effects you experience, it can still be embarrassing when brain fog causes you to forget your best friend’s name, or pain and fatigue become so overwhelming you have to sit down and rest, even if you’re in the middle of the store or walking your dog outside.
No matter what your experience of “embarrassing” fibro symptoms looks like, we want you to know you aren’t alone. The only way we can break the shame and stigma surrounding “embarrassing” symptoms is to talk about them, so we asked our Mighty community to share one photo that shows an “embarrassing” part of fibromyalgia they struggle with.
Even though there’s no need to feel embarrassed of something that’s totally out of your control, we want you to know that experiencing these feelings is natural and completely valid. It’s more than OK to not be OK, and there is no shame in struggling with fibro.
Here’s what our community shared with us:
1. “My face gets red so easily and without warning. I can literally feel the heat radiating off of it from at least three inches away! It shows up when I’m hot, cold, flaring and randomly! It’s mortifying. People always point it out, especially since I live in Arizona and they always think I’m dying from heat stroke or something. Nope, just another normal super embarrassing symptom. I hate it.” – Janessa O.
- Get involved with fibromyalgia
- About fibromyalgia
- Living with fibromyalgia: what’s next?
2. “I haven’t been able to do laundry for weeks. I’ve run out of clean clothes. I can’t manage getting the washing down to the machine and bending over to put it in – let alone getting the heavy wet clothes out and drying them!” – Kelly W.
3. “Here is a picture of me on my birthday in extreme brain fog and myofascial pain. All my memories seem to have faded into a foggy mist and it is painful to smile or even speak. As I don’t take any of the few calls that come my way the isolation and misery grows.” – Pooja P.
4. “The withdrawal from [pain medication] sucks. Can’t call in to work, so it was a week of falling asleep at my desk, wearing my tinted glasses for my headache and trying to eat something when I just felt nauseous.” – Krystina K.F.
5. “I’m 23. Sometimes, I can’t stand in my shower so I have to have a stool. My cane is sometimes right outside the shower, ready to help me get to my bed where I cry for an hour at the amount of pain I’m in. Worst part is living alone and no one can help you so you have to figure out how to do what needs to be done by yourself.” – Paige W.
6. “This is a picture of my hair right now – it’s greasy on top and I can’t even get my fingers through it as I’ve been too tired/in too much pain to keep my arms up long enough to brush and wash it. It’s embarrassing and it basically puts my life on hold, because even if I feel well enough to leave the house for a short while, I don’t because my hair is in a state.” – Dani S.
7. “I cry all the time, because I still can’t accept my new limits and get easily frustrated at work, at the gym, at home, the car, etc.” – Tamara M.
8. “This is an old photo showing a FM flare-up in the TMJ area. My therapist had taped my jaw joint to contain the inflammation using bright pink kinesio tape. Kinesio taping in general is very effective in containing and reducing flares a.k.a. inflammation. It is not embarrassing per se but draws a lot of attention than if the taping was done say in my knees or arms.” – Lakshmi R.
9. “Lack of independence. I have my service dog, or a ‘service human’ (or both) everywhere I go…I have to defend myself and ‘prove’ that I am ‘disabled enough’ to have my medical equipment with me on a regular basis. It’s not glamorous having everyone stare at you, follow you, ask personal questions, disrespect your space and time, disregard your privacy, use you as a petting zoo, use you to distract their children and act like they have never seen a dog in their life… it’s embarrassing and hard, but 100 percent better than living without her.” – Bay H.
10. “I have issues blacking out and falling with seizure-like episodes. It’s been getting worse. Most times I fall, the injuries aren’t visible. Usually a bump on the back of my head from hitting a wall, a door or sometimes a nightstand. Then sometimes I fall forward… I now have scar tissue on my face from the falls. I’m scared to get up in the morning or being out of bed at night. I’m scared that I’m going to fall down the stairs at work (they have a ‘take the stairs’ policy). I’m lucky I have a desk job so when I feel something about to hit me, I can just sit long enough for it to pass. It’s scary knowing it can hit me just about anywhere. I’m embarrassed that I can’t really do what most people my age can. I’m embarrassed that I’m so scared of all of this.” – Alissa C.
11. “I’m 30 and have had to start using a walking stick when it’s flaring really badly in my feet. I find strapping them helps but my legs and feet are starting to resemble my 86-year-old grandmother’s legs.” – Janelle F.
12. “Having to find places for emergency rests or even quick naps (changing rooms are a favorite).” – Brody R.
13. “The caption says it all!” – Puja R.
14. “The floor in my bathroom. Juice box fell there a few days ago. Not enough energy to pick it up and empty the trash can. I used to be neat. I hate seeing my house like this but I don’t have the energy to do anything about it.” – Samantha B.
15. “Bald spots.” – Christina L.S.
16. “I am embarrassed to talk to others about how tired I really am. Having fibro it’s so easy to try to hide how you feel. Mainly because you feel like people do not care or will not care as much as you do. It is easier just to act like you’re ‘normal’ (whatever that is) than to let them know how bad you are. I am tired so much that sometimes the selfies that I take and post are actually me in my PJs. I filter it up and make it look like I have it more together than when it is not. It’s hard to get out of bed and if it wasn’t for my family I would stay there all day. Once up it gets hard to want to do my hair or get ready like I would like. There is no energy there. So it’s best to act like it’s fine. Put the fake smile on my face and keep going.” – Nikki F.