To the person who does not believe in my illness

To the person who does not believe in my illness

By: Dr Alexa James

I just feel you. I feel you. I look okay, I’m okay. I live an active life, which is relatively normal. I’m walking, I’m driving, I’m climbing stairs. Visibly, I’m not disabled. I have no limp, no cane or wheelchair or walkers. I have no limp. I’m working a job of complete time. I’m living alone. I live alone. I take care of myself. I take care of myself. I’m cooking, I’m cleaning, I’m going to the ground to make a linen. I’m a grocery store and believe in all the bags on a journey to the house. I am laughing, I am crying, I am joking about it. Life, I’m glad and excited. I’ve got great days, and I’ve got awful days. I’m on holiday. I’m hiking, I’m bathing, I’m skydiving. I date, I go to the bars and dinner.

However, my disease is invisible. It’s the constant dull, burning muscles that you do not see. You don’t feel my full weariness and frustration that I can’t get a good sleep during the night. You see that I don’t twist and turn all night, hoping and praying that I will be sleeping for at least an hour. For times I am so defeated you are not there that I cry, sometimes for hours. You are not there. From my depression you do not hear the negative self-talk in my mind because my body and mind are under constant strain.

It doesn’t make it any less real because you can’t see my disease. You can’t see the air, but it’s right there? (All right, this is an extreme example, but you get where I go). You can’t see IBS, but when you have it, you believe. Somebody’s migraine you cannot see, but you can empathize with it. You can’t see someone’s cancer always, but you know how awful it is for someone who suffers and you want to help them.

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This invisible disease is awful. This wouldn’t be it, if I had to choose a fake disease. Pain, pain, sorrow, flames, shoots, blows, pain. The rigidity every day. Difficulties with daily tasks like hair washing, drying with blow and styling. The cabinet is vacuumed, dusted and cleaned. Remove the trash. The frustration of the time it takes to perform a simple task, usually in minutes.

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It’s impossible to imagine the energy it needs to counteract this disease day after day. It would take a great deal of time to come up with these specific pain points and sentiments just to keep up with the disease. There are so many specific, random and non-fibromyalgic symptoms and chronic pain conditions. The problems of the inner stomach are so unpredictable. For no reason, the dry skin. Sleeplessness. The fatigue. And fibro fog, the memory and focus are lacking. It might certainly be a good excuse, but it’s one of the most frustrating pieces of fibromyalgia. It is terrible to constantly forget and be distracted.

Do not assume that you see someone parked in a handicapped car park and they appear “fine.” Don’t judge and ridicule them. Do not judge them. It can sometimes be unimaginable the pain and energy to even reach the car and drive to the shop. Any steps that are saved are pain and energy. Energy to try and get the essential elements through the shopping trip, then fight back to the car, get home and be done during the day. This is sometimes the equivalent of a “normal” marathon runner.

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It’s not real to the person who stuffs my disease. Be patient. Be kind. Be friendly. Be comprehensive. Train yourself. Education others.

Sincerely, 

An exhausted, frustrated, and hurt fibromyalgia sufferer. 

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