chronic fatigue / chronic pain / Fibromyalgia / Spoonie Challenges / Writing journey

I’m Still Searching

Lately I’ve been angry. Why? I have listened to my doctor say to me on one visit that I’m disabled and need an accessibility permit, but on the next visit that I’m not disabled enough for certain forms to be filled out.

SearchingI get told constantly that I shouldn’t mourn the life I can’t have anymore. That I should be trying to make a new life within the limitations that I’ve got now. I know from my (unfinished) education in psychology that this is full of what makes the grass grow. To move forward I must mourn what I’ve lost.

I wanted to be a vet tech. I can’t do that anymore. I can’t lift the weight of 50 lbs (23 kilos) without my back screaming in agony. I love animals, and that was how I had hoped to give back.

I wanted to be a lawyer. Unfortunately, I can’t handle the course load anymore in a traditional classroom. Nor can I take the long hours it would require on my feet.

I also get told that I am too young to be disabled. I can say with certainty that none of us choose this. Anyone who thinks I want to be dang near 40 and requiring a rollator needs to give their head a firm shake. Five years ago, I was hoping to do the Couch to 5K. Right now I can only walk the-couch-to-500m.

About the only thing that keeps me sane is my writing. My writing is my escape from the body I have right now, the one that is broken and doesn’t work the way I need it to. I can lose myself in fantasy worlds, even just an alternate version of today.

Sadly, sometimes this body even keeps me from writing. Days like that one I had with my doctor certainly don’t help any either. The holy grail in the life of a person with a chronic disease/condition is a doctor within your area that listens to you, has hours that work, and cares.

All that said, I don’t want pity. I want understanding. As my sib from another crib says, we design our houses for ourselves; they are the thing that we can control. The outside world we cannot. I am sure she’ll agree that we just want to be like everyone else—able to do things without having to prove every day that we’re sick enough to require the modifications that allow us to get and do what we need.

(Editor’s note: Yup, I do agree.)


Amy M. Young is a Canadian writer who lives in the National Capital Region. She primarily writes rock fiction and her work can be currently found on her Website. You can also follow Amy on Facebook and Twitter.

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