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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by grinvalds


Find this story helpful? Share it with someone you care about.


Related to Trigeminal Neuralgia

The Moment I Discovered the Name of the 'Toothache' I Had for 20 Years

I had been living with severe teeth, face and head pain for years before getting a diagnosis of trigeminal neuralgia. At least 20 years. That sounds unrealistic, doesn’t it? How can someone live with such a painful condition for so long without getting a diagnosis? But that happens… not just with trigeminal neuralgia. I can remember [...]
Sad girl sitting on the bed with her head down and covering her face with her hands

What I've Learned About Growth After Losing My Hair and So Much More

This morning as I was looking for some medical information I stumbled across a gallon ziplock bag I’d forgotten about in my bathroom closet. It’s marked as a biohazard, and it’s full of hair. My hair. From my head. I’m not sure why but they brought it out to the waiting room during surgery and gave it [...]
lonely woman with umbrella in lake,illustration

To Anyone Who Has a ‘Thing’ You Don't Like to Talk About

I have the best people. I have people that save me seats at church, places at yoga and cupcakes. I have people to work out with, not work at work with, talk Netflix with and not talk at all with. I have people to drink coffee with, to drink tea with and to drink wine [...]
Acid Doodle Background Pattern

Dear Trigeminal Neuralgia, the 'Suicide Disease,' I'm Not Giving Up

Dear Trigeminal Neuralgia, This time last‎ year I never even knew you existed. Now I know you are so very real. You’re “the worst pain known to mankind,” “the suicide disease.” You live up to these names. Some people with you find no relief and feel suicide is their only way out of your physical, emotional [...]