Most people who do not have fibromyalgia have no idea what this syndrome is, and I would venture to say that even those who know about it cannot truly know it. That isn’t to say that people cannot have a deep understanding of the syndrome, I personally believe there are simply things that those who do not go through cannot know. The same goes for any serious medical condition. The aspect that I personally find the most frustrating and difficult is the impact this syndrome has both psychologically and on social gatherings. During a flare it is almost impossible for me to muster up the energy to pretend that I am alright. I try my best, but it leaves me in more pain and exhaustion.
My flares sound like the biggest exaggeration when I describe them, even when I choose to omit details. I become more paranoid about the possibiliy of having a celiac reaction because that is the last thing I want during a flare. I avoid physical contact with people because even a gust of wind will set my skin burning. My stomach revolts and becomes uncomfortable, which leads to the onset of anxiety. I feel guilty to say that I cannot participate because it looks like I am either flaky or just seeking attention. I get pitied or leave people annoyed for not being able to participate and I am left screaming on the inside. All I want to do is leave. Leave the extra pain, leave the looks of pity or annoyance. I want to scream because I feel trapped and helpless.
During flares especially, it seems as though people wonder if I am trying at all to get better. You bet I am. It may not be what you think I should be doing, but I am trying hard. I have ridiculously restrictive but healthy food intake because of celiac disease, allergies, insulin resistance and intolerances that the damage from celiac caused. I eat a cocktail of supplements hoping they will give my body what it is missing. I try hard to get control of my sleep patterns. I try to keep up with chores and exercise, but I tend to overdo it too often and relapse in more pain. All this while feeling as though I have no dignity because I have a syndrome that is brushed off to the side and not taken seriously. People don’t believe that it can be so bad while I still keep trying. There is this idea that if you are making an effort, then you can’t be that sick. Meanwhile, if you don’t make efforts you are lazy and seeking attention.
The hardest thing is to live with other people. I cannot always help and do my normal chores. I can’t always be cheery and social. I can go from ok to horrible pain very easily. Unfortunately, I get uncontrollably irritable when my pain gets bad. I don’t say that as an excuse for being short tempered, merely a statement of a fact. My usual coping method is to avoid contact with people. I space out and can’t hold a conversation, which can come off as me being rude and not caring. Excitement can actually cause pain flares, so it is hard to try and celebrate. The longer I live with it, the more difficult it is to hold onto hope. Especially when the underlying causes of the syndrome are so difficult to test let alone treat. Every aspect of it is exhausting in ways that I doubt I could ever accurately describe.
There isn’t a day that goes by where I don’t want to be sick. I think that’s the part hat people forget first. Even though I don’t seem to be getting better very quickly, or that my reasons for not being social are always the same, this is not what I want my life to be. I spend a huge amount of my time researching the articles on pubmed to try and find some lifestyle change or other that helps. I try to learn the mechanisms in my body, how they interact. If I do that, maybe I can do more than I am and actually start feeling better…