This week, I experienced my first ever serious ‘hate comments’ on my writing. I write because I enjoy it. I write about my life with trigeminal neuralgia because it might help someone. For the first time, I received some horrible comments from a woman on Facebook, in a TN Support Group – I couldn’t believe it!
I shared my last blog post on a few Facebook groups for people living with TN, a post about things I can’t do with my pain. It wasn’t an extensive, all inclusive list, just a short list about seven things that my pain prevents me from doing. It was light hearted, it was intended to be a conversation starter and, most importantly, it was something that I would have liked to have read when I was first diagnosed with TN. It was generally received very well, but one person really did not like my blog post.
The first comment on the Facebook post was just one word: ‘Wrong’. She then proceeded to post that I couldn’t possibly have TN, as I could sometimes manage a cold drink. She wrote that she’d had brain surgery and could now no longer feel any part of her face. She posted that she was out of work, because of her pain. She said that I didn’t know what I was talking about. She even posted pictures of the stitches in her head after brain surgery! I had to block her, before she continued, because I’m sure it was quite upsetting for other people reading, as well as for myself.
I didn’t think I’d ever have to justify a blog 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 okay if you ‘win’ this one. I don’t mind how mine pain compares to anyone else’s. In fact..
Your pain is worse than mine.
..Because 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, and the fact that 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 for me yet.
..Because your symptoms are different than mine. Some people are affected by heat, some are affected by the cold, some people’s pain is triggered by any movement at all, some have mainly random attacks, some people can brush their teeth, some can’t, some people have type 1, some people have type 2.. I have what they 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!
…Because you take more medication than I do. I have just weaned myself off amitriptyline for the second time. Last spring, I was on no medication at all and my pain levels told me that I immediately needed to be back on all my previous drugs, so by summer, I was taking around eight tablets a day. Now I’m only taking around 3 a day. The thing about medication for TN, that I have found for me anyway, is that it only helps with the pain, it never actually takes the pain completely away.. or everyone would be on it! I’m sure at some point, I’ll be back on eight tablets a day. Hopefully I’ll be on nothing again one day!
..Because you can’t 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.
..Because you’ve had it longer than I have. I’ve only had TN since 2015, but I can safely say that 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 3 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 suffer from the same suicide disease. The way that lady made me feel.. I promise I will never think I know better, if I’ve been here for longer, or because I take more medication than you. I won’t judge. I only feel sorry for her. ♡