When battling an invisible disease like fibromyalgia, strangers are not always obvious. When he refuses an invitation or chooses to take the elevator instead of the stairs, it’s all too easy for people to assume the reasons for it – without realizing that in fact, he’s only doing everything possible to control his symptoms.
We are working in partnership with the National Fibromyalgia Association to ask our Facebook communities what everyday things are that people don’t realize they are rooted in their fibromyalgia. Their answers reveal the secret struggles that fibro-warriors face every day, and that if friends and family pay attention, they will see how hard their loved ones are coping with the painful effects of fibromyalgia.
Here’s what they told us:
1. “Do not shower every day and do no laundry. People see me as lazy, but in reality, I prioritize what I can do everyday. Otherwise, I would be away for a month. It is difficult for people to understand how much energy and effort it takes to perform the simplest tasks. “
2. “I keep many of my curtains closed and the brightness of the appliances low; When I have a flash, it hurts a lot. My smell and my ear are too sensitive. Repetitive noises are agony for me.
3. “Nap. I hate sleeping during the day. I feel miserable when I sleep, but if I don’t go to bed, I will fall. Some of my friends love to take a nap and come on when I tell them that I spent the afternoon in bed. For me, however, napping is just one more way that my life is not mine now. “
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4. “I tightened my jaw very hard when I hurt (it probably seems that I am drawing strange faces!). People also think I’m strange not to drink alcohol, but it reacts with my medication and a hangover feels a million times worse! “
5. “I often rub my hands and sometimes my feet. Most people don’t think it is more than complacency. The reality is that I suffer from weakness and pain every day in my hands, arms and legs. “
6. “This weekend, I was at a wedding. Most of the people at my table were dancing and trying to tell me to join them. They don’t know that I was bravely smiling through the pain and that it was a two hour battle just to dress and appear. There was no longer any strength to dance.
7. “Google-Earth-ing everywhere I have to go (or I plan to go there) and I have never been before to assess whether the building would have stairs (inside and outside) and a parking space nearby. ”
8. “I wear a lot of diffuse socks because I have problems with cold feet. Fibromyalgia means that when I am cold, my pain increases even more. Ugg boots are also useful because they are soft and warm. “
9. “Avoid family reunions as much as possible. I come from a very large and strong family who likes to cuddle. I am surrounded by everyone and the children are running and everyone is talking about laughing and having fun. No one realizes how huge the sensory overload is for me. “
10. “One of the best examples is the“ test drive ”chairs to find the most comfortable. At work, there are several office chairs in the main work area that are used by several people on all shifts, so that they move and swap often. When I work in this area, I sit in each chair for a few seconds to see which one will cause me the least pain during the day (the chairs are the same, but some are older or more used than others). People who don’t know I have fibro may find it weird or funny, but I think even people who know it sometimes seem to find it “fun”.
11. “I’m almost 27 and have the memory of a goldfish. Mix the words so badly and stutter. People don’t realize that I have fibromyalgia and that’s why I do. “
12. “I take a deep breath when I reach the front door to work, giving me a huge smile. Chest outside, shoulders behind… keeping my face “I’m fine” until I collapse in my car at the end of the shift. “
13. “I don’t talk much because I have fibro fog and it is difficult for me to have a conversation. So it sometimes makes me seem indifferent to others, but it is not at all the case. I have trouble finding the words I want to say.
14. “When I have to stand for more than a few minutes, I swing from side to side to distract myself from the pain. Most think it’s just a nervous habit, but it’s basically my pain control. “
15. “Give up my social life. I’m going to work and I’m going home. That’s all i can do. I have to choose between going to church, family activities and meeting friends for the rest. And lately, rest is gaining.
16. “Sometimes I have a really bad push and I can’t go out. Instead of admitting my weakness, I say that the children are sick or something, so there is no harm, there is no lack. It makes me uncomfortable to admit it, and it makes them even more uncomfortable / angry / disappointed, etc. “
17. “I leave work at the end of my shift and walk home. I don’t say goodbye to anyone, because if we end up chatting, it will be even longer until I can rest at home and rest. “
18. “Download the TVs and radios when people enter the room. The sensitivity to noise makes the sounds get louder with the most different sounds. Each person added, instead of making it harder to hear something, amplifies the sounds. “
19. “When you take an extra day of work from a vacation weekend. It’s not just about playing and being lazy. It takes me days to recover from a trip, from cooking Thanksgiving turkey, from Christmas shopping, even after sitting in an uncomfortable chair eating a holiday meal with family and friends.
20. “In college, people don’t realize that I always tell them, ‘I have to go to the bathroom, be with you’ because I don’t want someone looking at me while I slowly walk up my painful path to the ‘floor. So I always apologize for being the last to go up, and alone. “
21. “Text instead of calling because I don’t know how I’m going to ring on the phone, and I can make the text look good without acting.”
22. “I take a few minutes every now and then when I go out, like when I go to the bathroom or when I blow up the kitchen, and I barely sit down and get up. Let me feel the exhaustion and the pain, then breathe in and out. “