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Learning to Accept the Unknown with an Undiagnosed Illness

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This time last year, I would never have considered myself disabled, chronically ill or a spoonie. This time last year I’m not even sure if I knew what a spoonie was. I was running anywhere between three and seven miles a day in preparation for a half-marathon. I had just finished a track season that left my body healthy and in shape. The only thing that ever hurt was the occasional shin splint.

Fast forward to February of this year. I started noticing my fatigue was getting worse and worse. The brain fog was making studying harder. I started to notice lower back pain and a bruise along my spine. In April, I started the ongoing process of trying to figure out what was even going on.


Running for miles used to make me feel strong, and now sometimes a simple flight of steps or standing up reminds me that my back and joints hurt when I move. I’ve had the occasional loss of feeling in my hands. The fatigue is still strong. But what has been the hardest to accept is that my body is not acting like it was such a short time ago. I can’t accept that I’m no longer healthy. I don’t feel any shame in having to ask for help or cancel plans because of how I feel, but I feel ashamed of myself.

I want what I lost and I want my healthy body again. I can’t help feeling that maybe I caused this or maybe it is all just in my head. The only thing that keeps me together is the multitude of disability and chronic health Tumblrs I follow.

Yesterday, I was told I had mild degenerative discs and osteoarthritis in my lumbar spine. It was a relief they finally found something that proved it wasn’t just “all in my head,” but I know it’s only the first piece of the puzzle. There will be more doctors, more specialists and more things I never would have imagined doing one year ago.

The hardest part for me is staying optimistic when I don’t know where it will all end. Not only am I still waiting to learn what is going on, but I’m also waiting to see if I’m going to get sicker. Since all of these symptoms came on so quickly, I’m worried they’ll keep progressing.

These past few months have been a toe-dip into the scary ocean of illness, doctors and ailments, but it has also been a mirror to show me how I can forget to take care of myself or love myself on bad pain days. As terrified as I am of these next few months, I’m trying to focus on the good that will come out of it as I learn to accept myself as a spoonie.

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Originally published: June 14, 2017
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