An open letter to my healthy friends,
When I say flare-up, I think you understand that means my symptoms are worse. In your health, I don’t think you always fully comprehend the impact of what that means for me.
Sometimes, I forget that not everyone lives in the world of chronic illness and speaks the chronic life lingo. When I say I’m flaring, it’s more than just slang the sick people use.
This is what I wish you knew about my flare-ups.
My chest hurts.
It hurts nearly all of the time and the pain sometimes feels like I’m having a heart attack. This is because the sac around my heart is inflamed and I feel like my chest is being crushed.
I am dealing with debilitating fatigue.
Forget what you think you know about tired. This is not “tired”. Take a moment and try to remember a time when you extremely over-worked your body. Remember a time when you were so exhausted from physical exertion you wanted to collapse and cry. Now imagine feeling that moment over and over for days. My body feels heavy and I feel weak. My arms and legs feel like they are bogged down in quicksand as I try to move. They tingle from weakness and exhaustion. It takes huge amounts of effort to exert energy.
I feel like I’m coming down with the flu.
I want you to think back to the last time you came down with a really bad case of the flu. Your body ached, your throat was sore, your nose was running, your lymph nodes hurt. I feel like this, but it is not the flu.
I have a low-grade fever.
That extra sweater I carry is because I am always freezing. The low-grade fever I run keeps me feeling cold. More often than not, I also wake in a cold sweat.
My mouth is dry.
Saliva is something that no one appreciates until they don’t have it. You see me constantly holding a water bottle everywhere I go but no amount of water in the world cures this kind of dry mouth. It feels like I am always choking. It is hard to eat, talk, or even breathe sometimes and my mouth often develops cuts and sores.
My joints hurt.
For me, this usually means my hip, feet, and hands. The worst pain of all is my hip, though. Sitting is hard. You may notice me shifting a lot in my seat, especially if the chair is hard. There are no pain-free positions. Because of my pain, I have a hard time straightening to a standing position. During a flare-up, you will often find me hunched over like a little old lady when I walk. Although in public I do my best to disguise this, you may notice me walking slow or leaning on my kids as a walking aid. They have learned to watch for when I need to lean on them and to walk slowly with me at their side. They have inconspicuously become my walkers when I need help.
I have a rash and my eyes are swollen.
All that you may notice is that my makeup is a bit heavier. In combination, I have always had a lighter butterfly rash as well as I have gotten very good at hiding it with makeup. I have also spent a lot of time working on making swollen eyes look decent with shading and shimmer. Take a good look at me in the morning before all that shellac covers the flare-up and you would hardly recognize me.
My hair is falling out.
Walk into my bathroom and you will find clumps of hair that keep escaping my broom. I lose hair faster than I can clean it up. My hair also breaks easily, leaving me trying to smooth down tiny fly aways. When I wash my hair, I can pull a handful of long hair out from the bottom to match the handful left in the tub.
My stomach hurts.
My weight fluctuates a lot. When I get sick, the idea of eating makes me think of being stabbed in the stomach by a thousand knives. It is easy for me to cut way back on what I eat because so many foods irritate me. I’m not watching my weight, the pain eating causes is not as bad as the pain of being hungry.
I feel like I am going to faint.
Sometimes I do. I feel weak and faint most of the time during a flare.
I remember I am dying.
When I am struggling through all of the things I just shared, I can’t help but be painfully aware of the fact that my body is failing. A body can only malfunction so long before the damage is disabling or fatal. Every flare-up is one step closer to that point for me. During flares, I think a lot of my kids and the future. The truth is, it scares me. Especially when my flares are really bad. I am at a high risk for early stroke, cancer, and heart disease. Whether I’m flaring or not, I worry a lot about taking care of my health, eating right, taking vitamins, and more. My health kicks are fear-driven. I’m trying to do everything I can to elongate my time with my kids. I feel vulnerable, lonely, and intimidated by the disease that is taking a life time to kill me. That is chronic illness.