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How Fibromyalgia Helped Me Become a Dreamer Again

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When I was a kid, one my favorite things to do was to dream up ideas with my best friend for businesses our grownup selves would own together. Some of our favorites were a sandwich shop, a clothing line, and a dress boutique. We had endless fun coming up with names, designs, menu items – and even the kind of music we would play and the layout of the buildings. I guess we’ve always had strong entrepreneurial spirits.

As I got older, the grownups in school started expecting us kids to be thinking seriously about our futures. We went to career fairs, took aptitude tests, and listened to people speak about different job fields. I distinctly remembered being given a large stack of papers listing all kinds of jobs, and being told I had 30 minutes to look through them all and pick three. I can still recall the feeling of panic, dread, hopelessness, and frustration that I felt.

I was supposed to choose my future, just like that? I had already begun to lose the naivety of childhood by this point; I was very aware, even at that age, that I didn’t know who I would become or where life would take me. The jobs I was most suited to were ones with low pay, poor projected growth, and uncertain stability. I wrote down a few jobs that seemed at least a little interesting, though I didn’t see myself being very passionate about them. I had made the decision to start thinking practically. It was what was expected of us, and I believed it to be the ticket to becoming who I wanted to be.

By the time high school was ending and college was looming in the near future, I was beginning to finally form an idea about what sort of career I wanted to pursue. At the same time, I was beginning to show more and more symptoms of what would years later be diagnosed as fibromyalgia. I had no idea what it was at the time, though. I just knew that I was tired. So, so tired…and that, for the first time ever, I was struggling to make good grades. By the time I graduated, I had been diagnosed with depression, and some of my other symptoms attributed to asthma and reactive hypoglycemia.

Armed with my diagnoses and plans of action, I began my pursuit of higher education. It was a rocky start, but I found my footing soon enough. I worked with disable student services from the very beginning, which was one of the best decisions I’ve ever made. But even with their aid and the few, but invaluable accommodations they helped me secure, my performance started declining pretty fast. It was not the classes themselves I struggled with. It was things like walking to classes, sitting through a whole class – even things like eating and sleeping. I went back and forth between trying to pretend that what I was experiencing was normal for college students, and panicking because I knew there was something really wrong. I felt like I was falling apart.

After a few major failures and a couple of medical withdrawals, I finally moved back home indefinitely. I needed to, as we put it, “figure this whole health thing out.” That in itself is a whole other long and twisting tale that I won’t get into now. I will say that along the way, I began to notice more and more issues with soreness, stiffness, aches, and pains. It was the pain that really lit the fire under me to get a correct diagnoses, and the symptom that led my doctors to look into a whole new vein of possible diagnoses.

Eventually, as with all fibromyalgia diagnoses, everything else was ruled out, and fibromyalgia was the only thing left.

There’s not much that doctors can tell me about fibromyalgia. They aren’t exactly sure what causes it. There aren’t very many treatments for it. There isn’t a cure. The internet has a little bit more to say, but of course it all has to be read with a savvy and skeptical eye.

What I find most frustrating, though, is that no one can seem to tell me how I’m supposed to live with it. By that, I don’t mean that I’m not sure how to accept it.  I’ve accepted it. I’m going to deal with this pain and fatigue and generally unpredictable body for the rest of my life. But what no one can seem to tell me is: What now? How do I work? Can I work? How am I supposed to support myself?

I came to realize, to my dismay, that all the practical plans I made for myself are not, in fact, very practical for me. The sort of job where you show up and you put in your time, where you get ahead by working more hours and pushing yourself harder than anyone else – that future can no longer be mine. I can’t do those things. So what can I do?

Well, I’m creative. Creativity is something so individual and unquantifiable, it’s just the sort of thing that can work in my favor. I’m smart, too. That will be an asset in whatever I pursue. Once I got over the self loathing idea that I was just lazy (I’m not lazy, I deal with fatigue), I was able to recognize that I have a fire within me. I am driven, and I am patient, and I can make things happen. In the absence of other aspirations, I began to remember the entrepreneurial ideas of my youth.

And so a whole new world of self-employment opened up to me. All these creative jobs where I’m my own boss that I had previously dismissed as impractical – it turns out they they might be the only truly practical jobs for me! The things that I though were important, like financial independence and stability, have taken themselves off the table. What is left are the things I once thought were only dreams.

I’ve proven to myself that even when I’m helpless, I am able to hold onto hope by sheer force of will. If anyone can make it happen, it’s a fibromyalgia warrior like me.

Getty Image by pkujiahe

Originally published: June 25, 2018
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