When you are fighting an invisible disease such as fibromyalgia, battles are not always obvious to outsiders. When you reject an invitation or choose to take the elevator instead of the stairs, it’s too easy for people to take on the reasons why – without realizing that you are in fact doing everything you can to control your symptoms.
We partnered with the National Fibromyalgia Association to ask our Facebook communities what everyday things do that people do not realize are rooted in their fibromyalgia. Their responses reveal the secret struggles that fibro warriors face every day, and that if friends and family are paying attention, they will see how difficult their loved ones struggle to deal with the painful effects of fibromyalgia.
This is what they told us:
1. “Do not shower every day or keep up with laundry. People see me as lazy, but in reality, I’m prioritizing what I can do every day. Otherwise he would be out for a month. It’s hard for people to understand how much energy and effort is needed to perform the simplest tasks. ”
2. “I keep many of my curtains closed and the brightness of the devices in the lowest; When I am having a flashing light it hurts a lot. My smell and hearing are too sensitive. Repetitive noises are an agony to me.
3. “Napping. I hate sleeping during the day. I feel miserable when I sleep, but if I do not go to bed, I will fall. Some of my friends love to take a nap and envy me when I tell them I spent the afternoon in bed. For me, however, napping is just one more way that my life is not mine now. ”
4. “I tightened my jaw very tightly when in pain (it probably just seems like I’m pulling strange faces!). Also people think that I am strange for not drinking alcohol, but it reacts with my medications and a hangover feels a million times worse! ”
5. “I rub my hands a lot and sometimes my feet. Most people do not think that this is more than just complacency. The reality is that 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 of the people at my table were dancing and they were trying to tell me to join them. They do not 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 more strength to dance.
7. “Google-Earth-ing everywhere I have to go (or I’m thinking about going) and I’ve never been before assessing whether the building would have stairs (inside and out) and a parking space nearby.”
8. “I wear a lot of diffuse socks because I have problems with cold feet. Having fibromyalgia means that when I’m cold my pain rises even worse. Ugg boots are also useful because they are soft and warm. ”
9. “Avoid family reunions as much as possible. I come from a very big and strong family that likes to hug. I am surrounded by all of them and the children are running a round and everyone is talking about laughing and having a good time. No one realizes how huge sensory overload is for me. ”
10. “One of the best examples are the” test drive “chairs to find the most comfortable one. At work, there are several office chairs in the main work area that are used by several people in all shifts, so they move around and interchange with each other often. When I’m working in that area, I sit in each chair for a few seconds to see which one will cause the least amount of pain during the day (the chairs are identical, but some are older or more used than others). People who do not know that I have fibro can find it strange or humorous, but I think even people who do know seem to find it “funny” at times.
11. “I’m ready to be 27 and have the memory of a goldfish. Mix the words and stutter so badly. People do not realize that I have fibromyalgia and that’s why I do this. ”
12. “Taking a deep breath when I reach the front door at work, putting a massive smile on my face. The chest out, the shoulders back … keeping in my “I’m OK” face until I fall apart again in my car at the end of the change. ”
13. “I do not really talk much because I have fibro fog and it’s hard to have a conversation. So this sometimes makes me seem disinterested in others, but that is not the case at all. I find it hard to find the words I want to say.
14. “When I have to stand for more than a couple of minutes I swing from side to side to distract myself from the pain. Most think it’s just a nervous habit, but in essence it’s my pain control. ”
15. “Give up my social life. I’m going to work, and I’m going home. That is all I can do. I have to choose between going to church, family activities, and meeting with friends about the rest. And lately, rest wins.
16. “Sometimes I’m having a very bad flare and I can not get out. Instead of admitting my weakness, I say that children are sick or something, so there is no harm, there is no lack. It makes me feel uncomfortable admitting it, and it makes them feel even more uncomfortable / angry / disappointed, etc. ”
17. “I leave work when my shift ends and I walk home. I do not say goodbye to anyone, because if we end up chatting it will be even longer until I get to rest at home and rest. ”
18. “Lower televisions and radios when people enter the room. Noise sensitivity makes sounds louder the more 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 for a holiday weekend. It’s not just playing and being lazy. It takes me days to recover from travel, from cooking 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 do not realize that I always tell them, ‘I have to go to the bathroom, be with you’ because I do not want anyone to look at me as I slowly climb my painful way upstairs. So I always compose an excuse to be the last one to go up, and alone. ”
21. “Text instead of calling because I’m not sure how I’m going to sound on the phone, and I can make the text look positive without acting.”
22. “I take a few minutes every so often when I’m away, like when I go to the bathroom or I blow up the kitchen, and I just sit down and pick myself up. Let me feel the exhaustion and pain and then breathe and go back in. ”