As someone who has had trigeminal neuralgia my entire life, and is experiencing the disorder slowly worsening over time, I often feel hopeless. Helpless. Alone. Hence the reason for online support groups, where sufferers can express themselves and talk to others who understand. Thank goodness for the internet, because if you’re in too much pain to talk, at least you can type out a few words on a keyboard. Maybe.
Yesterday morning, I had a severe attack that debilitated me for most of the day. The entire time it was happening, I experienced that same hopelessness I always do when this happens. And it makes it even more difficult when your loved ones don’t support you in your times of desperate pain and need. On the one hand, you want people to understand, but on the other hand you don’t want them to. Think about it: if they understood what you were going through, it would mean they knew what it was like. I wouldn’t wish this hell on anyone.
Even when I feel most alone, I know I am not. Even when I am actually screaming, begging for it to end, I know I’m not really alone. I know it will end, whether it’s in a few minutes or several long horrendous hours.
I fight. So what if people look at me and think, ‘she looks like she’s fine’. They don’t need to get it. Just because I look okay, doesn’t mean I am. And that’s what makes spreading the word about TN difficult; there aren’t usually physical signs for it. Nerve pain is hard to understand because people can’t see it, so they can’t understand it. After all, seeing is believing.
Try not to fixate on those who don’t understand, or refuse to. Worrying about it only adds more stress.
All we can do is try to spread awareness, and the intended outcome of educating people is a cure. I know that’s what I want most, and the thought brings tears to my eyes. I want to believe that, someday in my life, there will be a cure for trigeminal neuralgia. That one day I can take that magical cure and it will rid me of my pain, and I can go out on a cold day without fire-bursts of sparks shooting across my face. I’ll be able to listen to loud music again without the vibration making me ache. I’ll be able to use air tools again without cringing.
I know what it’s like to feel alone. If you feel like you’re alone, please know that you’re not. Even if we don’t know each other in person, even if it’s just a cyber communication, know that we are in this together. Someday, the pain will go away. I absolutely must believe that. Without that belief, I might go crazy. And I’m already halfway there, so I’ve got to preserve what sanity I have left.
Leave a comment. Keep in touch. You might feel like you’re alone, but you’re not. And that’s one promise I know I can keep.