I wrote a few weeks ago that I wanted to take a blogging break to focus more on myself and get my art journey back up and running. However, I didn’t want to let October go by without writing a post as it is Facial Pain Awareness Month and the 7th of October is Trigeminal Neuralgia Awareness Day.
Click here to learn about trigeminal neuralgia.
Trigeminal Neuralgia Awareness Day is Personal to Me
If you’re a regular reader of my blog, you’ll know that I’ve lived with facial pain for many years. I went from doctor to dentist looking for help and an explanation but neither was forthcoming. Eventually, in my early forties after living with the pain for about twenty years, I was told that I had trigeminal neuralgia.
In some ways, I felt relieved that my pain had a name after all of those years. Having a diagnosis meant that doctors prescribed medication to help.
But it shouldn’t have taken so long.
Doctors and dentists should have taken me more seriously sooner. They should have been able to diagnose my pain. And most importantly, they should have been able to treat my pain adequately.
When I joined trigeminal neuralgia support groups, I discovered that my story was not unique. So many other people had struggled to make their doctors listen and help them. Some people had self-diagnosed after researching their pain.
The most awful part of all this is that without a confirmed diagnosis, doctors won’t normally prescribe medication to help.
So much needs to change. That’s why trigeminal neuralgia awareness day is so important.
Trigeminal Neuralgia Isn’t the Only Reason for Facial Pain
There are many causes of facial pain. And all of them can be equally painful, frustrating, and difficult to diagnose and treat.
A few other examples of facial pain conditions are occipital neuralgia, glossopharyngeal neuralgia and geniculate neuralgia.
Click here to learn more about other facial pain conditions.
Please Help Bring Awareness for Trigeminal Neuralgia and Facial Pain Sufferers
When I wrote that heading, I first wrote, “Please Help Bring Awareness for Trigeminal Neuralgia and Facial Pain Sufferers in October”. But, as you can see, I changed it slightly. We don’t just need awareness during the month of October. We need awareness all year round.
People’s pain doesn’t just make an appearance in October for awareness month. It’s there all year round so we need awareness all year round too.
What Can Awareness Do?
We badly need research and adequate treatment options. But on a very basic level, we need doctors and dentists to learn more about trigeminal neuralgia and other facial pain conditions. They also need to listen to their patients and be more supportive.
Ultimately, we need doctors and dentists to understand this pain, recognise what their patients are dealing with and treat them adequately. That is obviously the long-term goal held by people like myself and organizations like the Facial Pain Association in the USA and the Trigeminal Neuralgia Associations throughout the world.
But, for me, personally, awareness is about much more than that. It’s about reaching those people who are living with unbearable facial pain. People who feel as though they are alone with little support. People who might be getting no answers or help. If those people read posts about trigeminal neuralgia, they might recognise their own pain. They will see that other people also live with the same horrendous pain. They might feel less alone. And perhaps they’ll be able to learn more about the condition so they can arm themselves with information to show their doctor. That might help put them on the right path to get the correct treatment.
What Can You Do to Help?
- Share posts and memes about trigeminal neuralgia and facial pain awareness on your social media pages.
- Talk about the conditions to people.
- Share videos about facial pain. (I have two on this page that you could share.)
- Turn your social media profile pictures teal which is the trigeminal neuralgia and facial pain awareness colour.
- Wear teal (a top, your nails or your hair if you dare!) But, please, if you do this, explain to people why you have turned yourself teal.
Thank You
Over the last few years, thousands of people have shared my blog posts and posts from my trigeminal neuralgia awareness page. Awareness only works if people do that, so thank you. What you do makes a difference.
Thank you so much for reading.
If this post resonated with you, I’d love to hear your thoughts in the comments.
And feel free to share it with your friends or support groups.
Take care,
Liz.
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I think you’ve done brilliantly to come back to do this post and I know how much effort you put in to raising awareness of TN and sharing your own experience. I’m just sorry you have to go through it all.
Your diagnosis journey is so infuriating. I know I’ve said it before but it makes me so angry. It happens to a lot of people, getting easily brushed off and fobbed off by doctors who don’t know and don’t care or simply don’t take it seriously. I went through that for years when I first had bowel issues and half the doctors didn’t believe me, while the other half just didn’t care.
The problem with access pain meds is, I think, only going to keep getting worse. The new NICE guidance for chronic pain is disgusting. Even if you’re in the ‘right’ group (as opposed to the group that basically means NICE thinks it’s in your head) it’s a struggle to get medication to begin with, or you have to fight to keep hold of it. And those med options aren’t great either. I think we need patients with chronic conditions to be in NICE, NHS and gov positions rather than people who just don’t have a clue what they’re dealing with or what they’re talking about.
Anyway, rant over! Have a restful weekend lovely.
Caz xx
Chronic pain is only one of the issues I have, having been poisoned twice (that I can prove) by bad drugs…..I also developed a connective tissue disorder, where tendons were actually weakened and would rupture with very little force put on them….one doctor said it looked as though my muscles were too large for my tendons. My story and how I found out what caused my issues and how I fixed myself is at my blog, at the website below.
Prayers are with you…Debra