Adventures in Narcolepsy: Part 5, The Dark Place

A letter from the night before diagnosis. I didn’t originally write this for publication, but just to work through my feelings. After re-reading it with a little distance, I decided it offered some insight into what it is like to have chronic conditions and what it is like to be facing a diagnosis of something incurable. It’s important to note that this was simply me at my nadir, I have, for the most part, been a lot more positive both before and since, and being diagnosed came primarily as a relief.  Content note: It’s a real downer.

Sadness from Pixar's Inside Out
It’s difficult to explain how profoundly tired I am and how much this is hurting my life. Sleep deprivation affects everything: my ability to pay attention, my ability to control my emotions, and my ability to mentally perform are all suffering. Between my anxiety about what is, at this point, almost certainly narcolepsy and the actual effects of that narcolepsy, I am really struggling.

I feel guilty that I am so low during what should be a happy time in my life. I just got engaged, and everyone is so excited about it, but I am so tired and anxious that I don’t have much room for happy. Which, obviously, creates anxiety about how I should be happier. I’m so barely together that I cry every time I feel even a bit of physical pain — I break into tears stubbing my toe or being bumped in my glasses.

The worst part for me is that I feel like I have no control over my brain. I’m experiencing depression, memory loss, inability to pay attention, and inability to remember words. I just can’t think right and since narcolepsy is functionally a brain injury I am freaking out because my brain is broken and my brain is really the most important asset that I have. Having a brain that’s useful intellectually is what I have, it’s how I’ve dealt with having other chronic conditions that prevent all the other things a young woman in this society can be expected to gain value from. I’ll never be thin or active or bubbly, but I could always cope because at least I could think and pursue intellectual and artistic pursuits. What if this fog never lifts, what if this is just reality? What will be left to me then?

My medical expenses are already nearly $2000 and that’s just in the diagnostic phase, I haven’t even begun to treat what’s wrong with me. I am incredibly lucky because I have a support network, but I’m terrified at the continuing expenses that this is going to bring to my life.  I hate this. I hate the not knowing and I hate not having anything I can do to make it better. I hate knowing that the chances of successful treatment are not 100%.

And I’m just so fucking tired all the time, I’m never not tired, it’s awful. They say that having narcolepsy is like Parkinson’s in terms of loss of quality of life. It’s so depressing. It’s so depressing that I want to cry right now just saying that.

I am never going to finish my dissertation and get my PhD. All that work for nothing.  I won’t ever be able to do any of the things I want. I will have a job at which I perform not up to my own standards. And I will not have the energy to do anything in my free time – not school, not reading, not art, not music, and especially not writing the book I’ve been developing. My life will be like what my life has been for the last year.

In some ways, it’s not new, just worse.  I’ve always been tired and I’ve always had to work around it, but not like this. It seems I always had narcolepsy but it’s gotten worse, possibly because I had pneumonia. They say a non-narcoleptic person would have to stay up 48 to 72 hours to feel as tired as a narcoleptic does after a full night sleep. I guess I feel like I’ve gone from 48 to 72. 48 sucked but 72 is hell on earth. And it just won’t stop. It’s not like I wasn’t already dealing with so much shit from my allergies and asthma, depression, and hypothyroidism (all of which I now know are probably caused and exacerbated by the narcolepsy). It’s not like I wasn’t already dealing with chronic incurable conditions. But no, let’s pour some more shit on top of that cuz it looked like you were very nearly on top of the rest of it.

I’d complain that it’s not fair but it feels at once so self-involved and so insufficient.  I just know that I’m going to break down into tears in front of the doctor on Wednesday, no matter what the diagnosis and no matter what the treatment and no matter what her prognosis for me is. I hate that. I hate to be emotional in front of other people. If I officially do have narcolepsy it’s going to be so upsetting, but if I don’t and there’s nothing they can do to help me, I’ll be out $2,000 and no closer to being able to make my life better.

The online support group is telling me that I shouldn’t ever trust doctors and I shouldn’t need a diagnosis to know what is wrong with me or to expect it to improve anything. They’re all just saying it’s going to suck forever and ever and there’s nothing I can do about it. And I’ve read plenty of literature that suggests this isn’t true, but the only people I can find to reach out to are just downers.

I’ve been reading stories from women who have narcolepsy. It’s not a disease you want to have if you are a woman. All of the treatments interfere with all hormonal birth control and can’t be taken if you’re pregnant. A disease you can’t treat if you want to have a child, a disease you can’t treat if you want to have control over your uterus. I also wonder at this point if it is simply unfair for me to bring a child into the world, between genetics and the fact that I’m going to be too tired to take care of it. I’m sorry, I’m crying again now, I’m sure there’s a million more things I want to say but I just can’t without crying. I feel so scared, I feel trapped, I feel betrayed by my body again and again and again and again.


 

Previously: Part 1, How I got Here
Part 2: WTF is Narcolepsy?
Part 3: The Sleep Test
Part 4: I’ve got Narcolepsy
Next: Part 6: The Sleep Doctor

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Adventures in Narcolepsy: Part 5, The Dark Place

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