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Why I Won't Compare My Chronic Pain to Yours

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I didn’t think I’d ever have to justify a post about my pain. I’m blessed to have experienced remission before and I’m not currently at the worst level of pain that I’ve ever been in. This doesn’t mean that I don’t know what it is like to feel the full force of chronic pain.

But I’m not here to claim my pain is worse than anyone else’s or that I know better. I hope your pain isn’t worse than mine. I hope you’re not struggling like I am, but I’m OK if you “win” this one. I don’t mind how mine pain compares to anyone else’s. In fact…

Your pain might be worse than mine if…

1)You’ve had brain surgery. The first time surgery was mentioned to me by a neurologist, my partner and I both said “no,” in unison, without even looking at each other. We’d already done the research and it didn’t seem like the route I wanted to go down, due to the many potential side effects, including paralysis of the face, permanent numbness, or even worse pain than before. We also considered the fact it isn’t guaranteed to work. Right now, I’m able to live without brain surgery. That is a choice I’ve made; my pain hasn’t made that decision for me yet.

2)Your symptoms are different than mine. Some people are affected by heat, while some are affected by the cold. Some people’s pain is triggered by any movement at all. Some have mostly random attacks. Some people can brush their teeth, some can’t. Some people have type 1, some people have type 2. I have what doctors think is atypical (type 2) TN, so currently I have fewer stabbing type “shock” pains and more long aches. I don’t think either are very nice. No matter what type of trigeminal neuralgia you have, I’m sorry you have any symptoms at all.

3) You take more medication than I do. I have just weaned myself off amitriptyline for the second time. Last spring, I wasn’t on any medication, but my pain levels indicated I immediately needed to be back on all my previous drugs. By summer, I was taking around eight tablets a day. Now I’m only taking around three a day. The thing about medication for TN, that I have found, is it only helps manage the pain, it never actually takes the pain completely away. I’m sure at some point, I’ll be back on eight tablets a day. Hopefully I’ll be on nothing again one day!

4)You are unable to work. I’ve only had a few sick days in my life, because I have the type of office job where I can drag myself in even if I look like I’m on death’s door and I can get away with barely functioning when needed. I’d be in pain at home and I’ll be in pain at work. That’s all there is to it for me.

5) You’ve had it longer than I have. I’ve had TN for almost three years, but I can safely say the absolute worst pain I’ve ever been in (or could ever imagine) was right at the very start, when I’d had it for about three days. That pain might be nothing compared to what someone else experiences daily.

Everyone’s neuralgia pain is different. My trigeminal neuralgia is not the same as yours.

Your pain might be worse than mine, we just both struggle with the same “suicide disease.”

l promise I will never think I know better because I’ve been here for longer, or because I take more medication than you.

I promise I won’t judge. We’re in this together.

Originally published: May 10, 2018
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