Why Not to Say 'It Could Be Worse' About My Trigeminal Neuralgia

I have trigeminal neuralgia. Most people haven’t heard of this, to be fair before I was diagnosed I hadn’t either. People who love me ask me what it is, so I explain. Often the response is, “It could be worse,” or “At least it isn’t cancer.” Although these phrases are meant to make me feel better, they don’t. I’m going to explain why:

Trigeminal neuralgia is one of the most painful diseases to live with, so telling me that it could be worse is very difficult when I’m in agony every single day. The pain is very real and just brushing my teeth can cause an attack.

Trigeminal neuralgia isn’t cancer, but it is very serious. It’s a lifelong condition that worsens over time. My condition is its own. It’s not in a competition to see which disease is worse. The pain is real for all who have any illness. Don’t compare, it’s not helpful.

The idea that it could be worse….yes. This disease could be worse; it could be terminal, and it isn’t. However, it does get worse. The pain increases, over time my meds will stop working and I’ll have to increase my dose assuming I respond to medication in the first place. Eventually they stop working. Eventually my options are limited and often surgical intervention is required.

The nickname for my disease is called the suicide disease because the pain is so bad.

This disease can take away the life you’ve known and the future you’ve dreamed about because even a gentle breeze can be excruciating.

Is it worse than other diseases? Is it better than what I could’ve had? The real question is why should that matter? I’m in pain. I’ll have to manage this for the rest of my life. I have to adjust my life for a disease. That’s enough. It’s relative. Each episode is the worst pain I’ve ever felt. Pain tolerance is different for everyone. My pain could be a relief to other experiences. But to me, it’s as bad as it gets and that’s what matters. The individual experience of the disease.

Try to make us feel better by validating our pain and experience instead of unintentionally putting it down. Don’t compare my pain to yours. Pain is pain and it sucks at every level.

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Thinkstock photo by grinvalds

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