When you’re fighting an invisible illness like fibromyalgia, the battles aren’t always obvious to outsiders. When you turn down an invitation or opt to take the elevator instead of the stairs, it’s all too easy for people to assume the reasons why — without realizing that in fact, you’re just doing your best to manage your symptoms.
We partnered with the National Fibromyalgia Association to ask our Facebook communities what everyday things they do that people might not realize are rooted in their fibromyalgia. Their answers reveal the secret struggles fibro warriors deal with every day — and that if friends and family are paying attention, they’ll see how hard their loved ones fight to deal with the painful effects of fibromyalgia.
Here’s what they told us:
1. “Not showering every day or keeping up with laundry. People see me as lazy but in reality, I’m prioritizing what I can do each day. Otherwise I’d be out for a month. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks.
2. “I keep a lot of my curtains closed and the brightness on devices on lowest; when I’m having a flare light hurts me so much. My smell and hearing are too sensitive. Repetitive noises are agony to me.
3. “Napping. I hate sleeping during the day. I feel miserable when I nap, but if I don’t lie down, I will fall down. Some of my friends love to nap and envy me when I tell them I spent the afternoon in bed. To me, though, napping is just one more way my life is not my own now.
4. “I clench my jaw really tightly when in pain (probably just looks like I’m pulling weird faces!). Also people think I’m strange for not drinking alcohol, but it reacts with my meds and a hangover feels a million times worse!”
5. “I rub my hands a lot and sometimes my feet. Most people don’t think this is anything more than self-comfort. The reality is, the weakness and pain in my hands, arms and legs is something I deal with every day.”
6. “This weekend I was at a wedding. Most people at my table were dancing and were trying to tell me to join them. They don’t know I was bravely smiling through the pain and that it was a two-hour battle just to get dressed up and show up. There was no strength left for dancing.
7. “Google-Earth-ing everywhere I have to go (or am considering going) and have never been before to assess if the building would have stairs (inside and out) and a parking spot nearby.
8. “I wear a lot of fuzzy socks because I have cold feet issues. Having fibromyalgia means when I get cold my pain gets elevated even worse. Ugg boots are also helpful because they are soft and warm.
9. “Avoiding family gatherings as much as possible. I come from a very big and loud family who likes to hug. I’m surrounded by all of them and the kids are running a round and everyone is talking laughing and having a good time. No one realizes how huge that sensory overload is for me.
10. “A prime example is ‘test-driving’ chairs to find the most comfortable one. At work, there are several office chairs in the main work area that are used by various people on all shifts, so they get moved around and swapped for each other pretty often. When I’m working in that area, I sit in each chair for a few seconds to see which one is going to cause me the least amount of pain throughout the day (the chairs are identical, but some are older/used more than others). People who don’t know I have fibro may find it odd or humorous, but I think even people who do know seem to find it ‘amusing’ at times.
11. “I’m soon to be 27 and have the memory of a goldfish. I mix up words and stutter so bad. People don’t realize I have fibromyalgia and this is why I do this.”Mesothelioma Law Firm
12. “Taking a deep breath as I reach the entrance door at work, putting a massive smile on my face. Chest out, shoulders back… keeping on my ‘I’m OK’ face until I crumble back into my car at the end of the shift.”
13. “I really don’t talk much because I have fibro fog and find it hard to carry on a conversation. So this sometimes makes me appear disinterested in others, but that isn’t the case at all. I find it hard to find the words to say.”
14. “When I have to stand for more than a couple of minutes I rock back and forth to distract myself from the pain. Most think it’s just a nervous habit, but in essence it’s my pain control.”
15. “Giving up my social life. I go to work, and I come home. That’s all I can manage to do. I have to choose between going to church, family activities, and meeting with friends over rest. And lately, rest wins.
16. “Sometimes I’m having a really bad flare and can’t get out. Rather than admitting my weakness, I say the kids are sick or something, so no harm, no foul. It makes me uncomfortable admitting it, and it makes them feel even more uncomfortable/angry/disappointed, etc.
17. “I walk out of work when my shift ends and drive right home. I don’t say goodbye to anyone because if we end up chatting it’ll be even longer until I get to lounge at home and rest.
18. “Turning down TVs and radios when people come in the room. The noise sensitivity makes sounds get louder the more there are different sounds. Each added person, instead of making it harder to hear something, amplifies the sounds.”
19. “When you take an extra day off work from a holiday weekend. It’s not to just play around and be lazy. It takes me days to recover from travel, from cooking the Thanksgiving turkey, from Christmas shopping, even from just sitting in an uncomfortable chair eating a holiday meal with family and friends.”
20. “In college, people don’t realize I always tell them, ‘I have to go to the bathroom, be right up with you guys’ because I don’t want anyone looking at me me while I slowly climb my painful way upstairs. So I always make up an excuse to be the last one to go up, and alone.
21. “I text instead of calling because I’m not sure how I’ll sound over the phone, and I can make the text sound positive without acting.
22. “I take a few minutes every so often when I’m out, like when I go to the bathroom or pop to the kitchen, and just sit and gather myself. Allow myself to feel the exhaustion and pain then breathe and go back in.”