Tuesday, October 07, 2014

Trigeminal Neuralgia Awareness Day

Today, the 7th of October, is International Trigeminal Neuralgia Awareness Day. If you use Facebook, you may have noticed a plethora of teal coloured profile pictures representing the condition.

I changed my own profile pic to this.

This represents my face pain. The Trigeminal Nerve comes from the brain and enters the face via the Gasserian Ganglion (shown in yellow on my picture). The nerve then branches into three : Ophthalmic (red), Maxillary (orange) and Mandibular (blue). I get pain on each branch of the nerve, fortunately mostly on one side of my face, but I do sometimes have pain on the other side too.

There is no known cause for my pain, as is the case for many other people. Obviously, there has to be a cause, but that cause is unknown to doctors. That can be a huge problem. If a cause cannot be found, it is extremely difficult to treat it. Another problem, possibly an even larger problem, is that when a cause cannot be found, some people, including some doctors, may actually question the realness of the pain. It casts doubt on the patient. It can make patients feel as if nobody believes them.

This is not unique to Trigeminal Neuralgia though. Many, many conditions are the same. Especially when there are no visible signs of an illness. An Invisible Disease. People can look healthy, but can feel far from it. They can be living every day in agonising pain, but nothing shows. Absolutely nothing.

So how can that be fixed? Walk about with a post-it on my forehead with a list of ailments? Paint my face teal and draw on the lines of the nerve, like the photo above? Would a stranger walking down the street see my teal face and realise I have Trigeminal Neuralgia? They might...if they had trigeminal neuralgia themselves and if they are part of online support groups. But if they have never heard of it, they would be none the wiser and would simply wonder why I had painted my face this lovely shade of blue.....or is it a lovely shade of green?

Having a colour to represent a condition is good as long as people are also given information about the condition. The information is the important part.

The truth is that a colour doesn't define a condition. Likewise, a condition doesn't define a person.

That photo above might represent my pain. But it certainly doesn't represent me.

I have chronic face and head pain (and back pain, but I'll ignore that for now), but that's not who I am. It's part of me. But it's not all of me. I don't want to have a post-it attached to my forehead to tell people about my pain.

I guess I've lived with pain for so long, that I don't know anything else anyway, but I sometimes wonder if my pain has actually helped turn me into the person I am. And, I will admit that I am quite happy to be that person.

I think it is so important for people to not allow their illness to define them. Obviously, because I help with awareness and support for Trigeminal Neuralgia, it does take up a lot of my time and energy. But I also have to switch off from it. I cannot let TN define me. There are some things I cannot do due to my pain. But there are other things I can do despite my pain. I prefer to focus on those things, otherwise, my pain would define me.

The Teal Appeal

I've always loved the colour teal. In fact, I liked the colour so much that when I got married, my Mum wore teal. She went shopping for an outfit and came home and showed me. I was so happy when I saw it and I said it was my favourite colour. She said, "I know, that's why I chose it."

So my Mum wore teal for me before it ever became fashionable to ask people to wear a certain colour to represent a certain condition.

People have been working really hard to try to get some awareness about Trigeminal Neuralgia. Making their social media profiles teal, trying to light buildings in teal, attaching teal ribbons to trees, asking people to wear something teal.

Hopefully people will ask why a building is being lit in teal, why someone has tied lovely teal coloured bows on trees, why so many people are sporting teal nail varnish during October. Hopefully their efforts will lead to more people learning about Trigeminal Neuralgia.

I haven't actually asked anyone to wear teal on my behalf. My family and friends know what my life is like, give me support and they share my posts on Facebook about TN. I don't need them to wear something teal on one day of the year to tell me they support me. I also know that it can be difficult for some of my family to see my TN related posts or pictures like the one above. They hurt because they know about my pain. They hurt because they care.

On Wednesday, I will remove my teal TN profile picture and replace it with my normal photo. However, I will still carry on raising awareness about Trigeminal Neuralgia.....awareness doesn't stop after awareness day.