I feel you. I look fine, I act fine. I live a relatively normal, active-ish life. I walk, I drive, I climb stairs. I’m not visibly handicapped. I don’t have limp, a cane, a wheelchair, or a walker. I work a full time job. I live alone. I take care of myself. I cook, I clean, I go up and down to the basement to do laundry. I grocery shop, and am a firm believer of one trip into the house with all of the bags. I laugh, I cry, I joke around. I’m happy and excited about life. I have great days, and I have terrible days. I go on vacations. I hike, I swim, I skydive. I date, I go out to dinner and bars.
But, my illness is invisible. What you don’t see is the constant aching, burning muscles. You don’t feel my complete exhaustion, and frustration that I’m unable to get a solid night sleep. You don’t see me tossing and turning all night, hoping and praying to get at least one hour of uninterrupted sleep. You aren’t there for the times I’m so defeated that I cry, sometimes for hours. You don’t hear the negative self-talk in my head from my depression due to the constant strain my body and mind is under.
Just because you can’t see my illness, doesn’t make it any less real. You can’t see the air you breathe, but it’s there, right? (Okay, this is an extreme example, but you get where I’m going). You can’t see IBS, but you believe when people have it. You can’t see someone’s migraine, but you can empathize with them. You can’t always see someone’s cancer, but you know how terrible it is for someone suffering and want to offer any help you can.
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This invisible illness is terrible. If I had to choose a fake illness, this would not be it. The pain, the aching, burning, shooting, stabbing, pain. The stiffness day after day. The difficulty doing everyday tasks, such as washing hair, blow drying and styling. Vacuuming, dusting and cleaning the liter box. Taking out the trash. The frustration of the hours it can take to do one, simple task, that usually can be done in minutes.
The energy it would take to fake this illness day after day is unimaginable. To come up with such specific pain points, and feelings just to keep up with what the illness should be would be so time consuming. There are so many specific, random symptoms other than the pain that come along with fibromyalgia, and any chronic pain illness. The internal stomach issues, that are so unpredictable. The dry skin for no reason. The insomnia. The exhaustion. The “fibro fog”. The lack of memory and focus. Sure, it could be a good excuse to get away with work, errands and tasks, but it is one of the most frustrating pieces of fibromyalgia. Constantly forgetting and feeling distracted is awful.
If you see someone parked in a handicapped parking spot, and they appear to be “fine”, do not assume. Don’t judge them and ridicule them. The pain and energy it can take to even get to the car and drive to the store is sometimes unimaginable. Any saved steps is pain and energy saved. Energy to try and make it through the shopping trip to get just the bare essentials, before struggling back to the car, getting home, and being done for the day. Sometimes, that is the equivalent of a “normal” person running a marathon.
To the person who things my illness isn’t real. Be patient. Be kind. Be understanding. Educate yourself. Educate others.
Sincerely,
An exhausted, frustrated, and hurt fibromyalgia sufferer.
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