By :Erin Migdol
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.”