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4 Things About My Rare Disease I'm Tired of Explaining

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Healthy or not, we all have things in our lives that overwhelm us. Having a rare, chronic illness, I feel we have a variety of frustrating things we deal with that others don’t understand — or don’t want to.

Here are the four most frustrating things I’m tired of explaining to people, sometimes to the same person over and over again.

  1. There is no cure. I have been diagnosed with multiple chronic illnesses. Most of them are rare, and all are incurable. Why? I have no idea. I can’t answer questions about why I’m still sick, or why the medical industry has not found cures yet, nor if they will ever find any. I am not a doctor, just a patient.
  2. I cannot shower every day. It’s more like every two to three days. I am already twice as slow getting out of bed. With a shower, I spend ages getting the temperature right. Then all the bending and stretching wears me out. Showering is emotional and tiring. It’s not that I don’t care about my hygiene, but I care about my spoons and using them for more important, less overwhelming tasks.
  3. Why I’m always poor. Two words: chronic illness. How often do you need to visit the pharmacy? Maybe once every few months? Or once in a while, when you’re struck with the flu? I have to go every couple weeks. I didn’t ask for any of this, but it’s somehow my financial responsibility to manage them. That includes the pharmacy, appointments with my PCP and specialists, and all the “healthy” food I have to eat to suppress symptoms.
  4. Why I stay home. Here is the thing: my entire body hurts some days. I have days when every time I move, I’m going to faint. On these days, I have to sit and cradle myself, most likely almost in tears, waiting for the flare to stop. It is hard for me to plan ahead, for I never know when symptoms will start. Sadly, my physical symptoms don’t give me a day off just because someone has planned something.

I will never ask anybody to feel sorry or feel pity for me. I just ask for a little patience and understanding.

Someone once said that it hurt to be my friend because I cancel plans and often stay at home.

The truth is, every day, I’m just trying to find my way in this big world while managing multiple illnesses.

I promise you, I am having a harder time being me.

But I am not a burden.

Originally published: August 8, 2018
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