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When Going to the Doctor Is Your Full-Time Job

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Most women (at least in my world) in their early to mid-20s are completing grad school, going to wineries and attending engagement parties. They have a full-time job doing what they love, they’re in a loving long-term relationship and they live in a cute little apartment with their significant other. They may be barely making ends meet like many 20-somethings, but most of them appear to have, at the very least, a functional and sustainable life.

Now, I know it doesn’t do anyone any good to compare, but when I see pictures of my friends’ newborn babies on social media or photos of them posing in their white coats in medical school, it’s hard not to reflect on my current state — sometimes even resenting what may have led me here.

I’ve been conditioned to pride myself on making it through college. At first, I was hesitant about giving myself sufficient credit as it did take me five and a half years to complete my undergrad. But I learned that everyone really does move at their own pace, and I was never being lazy; I was ill.

Since I graduated, however, I’ve been bombarded with the infamous question about what I do for a living. Where do I work? Am I in school? At least while I was in school, part-time or not, I had a story to tell that deflected from my illnesses. But since I completed my undergrad and my illnesses have dramatically worsened in many ways, I’m unable to have anything else in my life to talk about. What is my full-time job, you ask? Doctors. Going to the doctor is my full-time job. I’ve been seeing doctors like mad for the past six years, although I’ve really seen them all my life for various reasons. You would think things would’ve calmed down a bit by now, but the thing is:

1. I’ve yet to find an effective treatment.

2. My illnesses keep building and building on top of one another.

3. I’m essentially still undiagnosed in many ways.

That third point brings me to one of the most frustrating components of chronic illness: in many cases, you will always be a mystery. Illnesses are like that. When you have diseases and disorders that keep stacking up with very vague symptoms, you reach a point where it becomes impossible to make connections anymore, and I’m currently in a place where I could get some effective treatment, but it requires a lot of work on my end to get there.

This being the case, my full-time job is calling doctors, scheduling procedures, speaking with the insurance company, making comprehensive lists of all of my symptoms (mental and physical) and conditions and how they all interrelate to hand to the new doctor so they’ll have a place to start, making sure I’m adhering to a proper diet and making sure I’m not wasting all of my spoons (see “spoon theory” for those who don’t know what it means).

My full-time job is trying to do it all myself, and it’s because I feel I have to. This is why part of my part-time “work” is trying to be an advocate for chronic illness in any way I can.

What is my full-time job, you ask? My full-time job is my personal well-being, because right now, it has to be.

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Originally published: October 21, 2016
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