Trigeminal Neuralgia – So Painful But It’s Invisible

As I write this, I have sciatica. I am struggling to walk due to a trapped nerve and I can’t straighten up properly. It is extremely painful. If people could see me right now, they would instantly know that I am in pain. As my regular readers know, I live with a few painful conditions. One of them is trigeminal neuralgia which is also extremely painful but, unlike sciatica, it’s invisible. Nobody can see my facial pain. They can’t see my hot, aching cheek. Nor can the see the electrical current that’s running through my teeth. They can’t see that the corner of my eye is burning. Unless I tell people, nobody knows that my face is painful.

Learn more about Trigeminal Neuralgia

I know that if people saw me just now while I try to hobble around my house, they would be saying things like, “Oh, you’re in agony”, and “Can I do anything to help you?” simply because they can see how much this sciatica is affecting me. I don’t look for sympathy, but because people can see my pain, that’s how they react.

People don’t tend to have that reaction if they can’t see the condition. So many people live with invisible illnesses and they need that same level of empathy and compassion. But, instead, they’re often met with questioning looks when they try to explain how they are feeling. They are often judged on their capabilities. They encounter scepticism and criticism more than empathy and compassion. “You don’t look sick – you look fine, so you must be fine” is a common attitude.

I really wish that would change.

Trigeminal Neuralgia Is Painful and Invisible

Trigeminal neuralgia is extremely painful. People tend not to know about it unless they suffer from it or know someone who does. Often, that includes doctors and dentists. I have written about my own long road to getting a diagnosis many times. Doctors and dentists didn’t recognise my pain for about twenty years. But my story is not unique. Since I first started working on awareness, I have spoken with so many people who have been in the same position.

Since trigeminal neuralgia is a painful invisible illness, people who live with it often find that they don’t get empathy or compassion. If people knew more about it, perhaps that could change. That’s why we need more awareness.

Awareness Is So Important

I don’t have the power to cure trigeminal neuralgia. Nor do I have the power to find better treatments. I’ll leave that to the experts. But I can try to raise awareness which will hopefully bring more understanding and empathy.

I write posts on my blog and on my Facebook awareness page to try to help other people understand the condition more. But, this month, I decided to make a video to try to explain what it’s like in more detail. I wanted to make trigeminal neuralgia visible so that people can see what I, and many others, feel.

You can also watch and share this video from the following social media sites:
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Some people might look at those two minutes in my video and think I look fairly healthy and composed. Some might think that it only took a few minutes to make. Hmmm….how wrong they would be. Some people might think that I didn’t look as though I had any pain. But that’s the exact point of the video. No matter how someone looks, they could be living with an invisible condition. They could be living with pain or symptoms that nobody can see.

It probably took me at least two weeks to make a two-minute video.

I have a relatively small window during the day when I feel ‘able’ enough to do something like this. And even then, I had to redo it so many times because I kept making mistakes or slurring my words as though I’d had a few too many drinks. (I blame my meds for that!) And I kept forgetting what I was saying halfway through the recording. (Meds, again!) Writing is easier than speaking! It was very frustrating but sometimes I can be stubborn and was determined to do it.

Since making it, several trigeminal neuralgia sufferers have contacted me to tell me the video shows exactly what their pain is like. I’m not happy that so many people live with this pain but I am happy that they think I have been able to demonstrate how their pain feels. I hope it helps non-TN sufferers to understand more.

This Video Doesn’t Show Everything

It doesn’t show the fatigue, the brain fog, the memory problems or the mental health problems associated with having trigeminal neuralgia or any other chronic health condition.

Nor does it show the loneliness, the guilt, the anger or the frustration.

Living with any type of chronic illness can bring so many other issues and most of them are also invisible.

This week is Invisible Illness Awareness Week

I’ve written about invisible illnesses in the past and I think all my posts have a fairly common theme – treat people kindly.

Supporting Someone Who Has an Invisible Illness

Nobody knows what someone else is living with. How people look explains nothing about their health or their lives. Nobody knows if they have an extremely painful condition like trigeminal neuralgia. Nobody knows if they are living with fibromyalgia, stomach issues or a mental health problem.

I hope my video might give a little insight into life with trigeminal neuralgia. Hopefully, it might serve as a reminder to see beyond how someone looks. And hopefully, people might find more empathy, compassion and kindness.