I know that regular readers already know why I blog about trigeminal neuralgia and life with chronic pain but I thought I would write this post for anyone who doesn’t know.
I have a reason for doing this and will explain that later.
Why Do I Blog About Trigeminal Neuralgia and Other Chronic Pain Conditions?
In short – I live with trigeminal neuralgia and other painful conditions and I hope that my story might help other people in some way.
Trigeminal neuralgia, in particular, needs awareness and through my blog, I try to achieve that.
About My Pain
I have scoliosis which has caused me to have chronic back and rib pain and trigeminal neuralgia which means I have constant facial pain. Both of those conditions should have been treated differently when I was younger.
I was diagnosed with scoliosis (a curvature of my spine) when I was ten years old. I didn’t see a specialist, just the local orthopaedic surgeon. He wrongly said that it was only a cosmetic problem and would never cause a problem. At twenty, when I saw him because of my back pain, he said he didn’t know much about scoliosis and asked if I wanted to see a specialist. He had waited ten years before saying that. By that time, it was too late. A specialist could do nothing to help.
Due to scoliosis, I have spent most of my life living with chronic back and rib pain. I am disabled because of that pain. It’s often extremely severe and very often has left me almost bedridden.
You can read more about my scoliosis story here
I have also lived with migraines and facial pain since my twenties. It was shrugged off by doctors and dentists. GPs sent me to see the dentist. My dentists sent me to see my GP. They all said there was nothing wrong and told me to take paracetamol. I was in agony and the pain worsened as I got older. Eventually, in my forties, when my face was in horrendous constant pain, a dentist told me the pain was coming from nerves in my face. Shortly after that, a doctor diagnosed me with trigeminal neuralgia.
You can read more about my facial pain here
I Had Never Heard of Trigeminal Neuralgia
Like most people, I had never heard of trigeminal neuralgia until that doctor uttered those words to me. I came home, googled the condition and tried to learn more about it.
I’d been living with pain for most of my life and, I think at that point, I realised I wanted to be more proactive in some way. I couldn’t do anything to change what had happened to me. But I thought that perhaps I could use my experience with pain to help other people in some way.
I got involved with the Trigeminal Neuralgia Association in the UK and became a volunteer on their email helpline. Then, with some TN friends, I started a TN support group and a TN awareness page on Facebook.
I Then Started to Blog
I wrote a few posts on an old blog about trigeminal neuralgia and people in the support group told me that they could relate to everything I wrote. Some people said that my story was similar to their own stories and that my posts had helped them. Some told me they’d let their families read my posts and it had helped them to understand more.
That old blog was a bit of a mish-mash of posts so I decided a few years ago to start this blog, Despite Pain, so that I could focus on writing about living with chronic pain conditions.
I’d had to take early retirement from work when I was 28 due to my pain. When that happens, especially at a young age, it’s very easy to lose a sense of purpose. I’m now 57 and for the last few years, I have felt as though I have a renewed sense of purpose. That purpose is in raising awareness and trying to help people like myself.
Despite Pain: A Blog About Trigeminal Neuralgia, Chronic Pain and Other Health-Related Topics
Giving the correct information is key to helping people understand what we live with and through my blog, I try to achieve that.
When I blog about any condition, whether that be trigeminal neuralgia, chronic pain or coeliac disease (another condition I live with), I research my facts before posting. For example, when I wrote the blog post about emergency treatments for trigeminal neuralgia, I researched books and websites and used the information I had obtained from well-known TN specialists. I only give information which I am sure is correct.
I also write about coping strategies that might help people. There are no magic cures for pain and over the years, I have had to learn coping strategies (like breathing techniques and pacing) which I use alongside medication.
Do those coping strategies stop my pain? No. But they help me get through each day. And by sharing them, I hope that perhaps they might help other people.
I Keep it Real
I try to show the reality of living with chronic pain. And I try to explain how pain affects mental and emotional health because pain doesn’t just affect people physically.
There’s More to Chronic Pain Than Just Pain
That can sometimes make for some depressing reading…and writing. So I don’t only write about pain. If I did, I don’t imagine it would do my own mental health much good. I have to find a balance, so I also write about the importance of self-care and occasionally write about life in general. Oh, and my dog seems to find her way into some of my blog posts too.
Blogging About Pain Isn’t Easy
It really isn’t easy. I love writing but it can be draining. When I’m working on a post for my blog that’s giving the gory details about the horrific pain of trigeminal neuralgia, it can be especially draining. But if those posts bring some awareness, it’s worth it. If a post helps just one person to understand more about trigeminal neuralgia, then I believe it’s worth it.
I spend hours writing, editing and re-editing posts. Brain fog from my medication doesn’t exactly make writing an easy task. The ideas are in my head. Getting them from my head and then onto the blog is a whole other story. It’s not just writing though. I also create images for posts and social media pages and have made videos occasionally.
All that takes time, effort and energy. I’m not complaining about that. I don’t do this for thanks or praise. I do it because I hope that in some way, I can help people.
The Reason I Have Written This Post
As I said earlier, I run the End Trigeminal Neuralgia page on Facebook. I’ve been doing so for about 11 years. I post regularly on it and run an attached private support group. The page and group have a few objectives:
- Creating awareness about trigeminal neuralgia and other types of facial pain.
- Giving information about trigeminal neuralgia, treatments and coping strategies.
- Supporting people with the condition so they feel less alone.
Last week, I shared an old blog post on the End Trigeminal Neuralgia Awareness page about finding distractions as a coping strategy.
A distraction doesn’t take my pain away but it can help me to stop focusing on it quite so much. The distraction might only do that for a few minutes sometimes. But those few minutes can give me breathing space. That’s why I shared that post.
Some People Didn’t Think I Should Have Shared It
Someone commented on the Facebook post.
“my first reaction to this was FU!! are u kidding me. it makes me think whoever wrote this never suffered from a severe trigeminal flair up.”
My own first reaction was to reply in a similar manner but I didn’t. It was actually hurtful. I responded by explaining that I do have trigeminal neuralgia and that distractions are often ued as a coping strategy by some people.
Another person joined the criticism. Part of what they wrote was:
“I totally agree with your sentiments – it sounds and looks like a post to make money, written by someone who doesn’t “get it” at all.
When my pain is high I can’t concentrate to do a single thing on that list! I literally lay in bed doing nothing but cry/whimper.
The rest of the time I’m trying to fit my needs and obligations in to not enough time to meet them all – no need for distractions then either.”
After I gave a similar explanation along with a link to a trigeminal neuralgia awareness video on my blog, they respoded:
“I’ve seen that, thanks. Even shared it at the time.
Which makes this post all the more distressing and frustrating.
Given so many of us struggle to get others to realise how debilitating TN actually is, a post suggesting you just read/watch a film to feel better feels like a betrayal.”
I Wasn’t Betraying Anyone
Since I was young, I have lived with constant disabling pain so I understand what life is like. I wasn’t trying to underplay the severity of trigeminal neuralgia when I shared that blog post. And I definitely wasn’t suggesting that a distraction can make the pain disappear. In fact, a paragraph from the blog post says this:
“But when you are living with chronic pain, it’s not always easy to distract yourself from it. In fact, it can be extremely difficult. It’s often a game of ‘who can shout the loudest’ and pain does like to be heard. If your pain is anything like mine, it probably has a very loud voice.”
Am I Overly Sensitive?
Maybe I am too sensitive. But those comments upset me.
Trigeminal neuralgia is considered to be one of the most painful conditions known to mankind and I write about that fact in my blog often. I write about how awful it is and how pain can affect mental and emotional health. I’ve made videos to try to show people what trigeminal neuralgia feels like.
Yes, I Do Get It
I have TN. So, yes, I do get it. I do not and would never downplay trigeminal neuralgia to anyone. And I would never suggest that anyone can cure their pain by watching a movie.
Regarding the comment about my blog post looking like a post trying to make money…I will explain that.
As stated on my blog, I am an Amazon affiliate.
It costs money to run a blog. It’s my choice to do that so I’m not looking for sympathy. But occasionally, I have posts with Amazon links to try to generate some money to help pay for my blog. If anyone clicks on those links, and then buys something from amazon, the products cost no extra to them but I might earn a few pence (if I’m lucky). It doesn’t even come close to paying for my blog though.
If anyone thinks that my blog is making me rich, I can assure you, it’s not. It’s not even enough to keep me going in chocolate.
Apologies For Ranting
I apologise for having a bit of a rant about this here but I hated thinking that some TN sufferers thought that I ‘didn’t get it’ or that I was ‘betraying’ people.
Friends said I should ignore it. Indeed, I would tell other people to ignore comments like that. “Don’t let them get to you.” That’s what I would say.
I probably need to learn to take my own advice.
At first, I wrote this post because I needed to vent and writing helps me do that. Once I wrote it, I then had to decide whether to press the publish button or file the post in the delete bin. Even right now, I am still not sure. If I do publish it, I may be leaving myself open to more criticism or being called a snowflake. But if I do publish it, people might realise that the person behind the blog is human and she really does understand life with trigeminal neuralgia.
If you are reading this, obviously, I opted to press the publish button.
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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Scoliosis is something you don’t usually think of being diagnosed at such a young age as you were. My mum has it but mildly, and nothing was ever offered or suggested to help with it at all. To have it suggested to be cosmetic and that it’d never cause a problem is outrageous. Admit it if you don’t know anything about the condition, admit it if you’re unsure and need to research it to help your patient, but never come out with such dangerous and incorrect BS. I’ve had experience, as has my mum now sadly, of doctors fobbing patients off time and time again. Just when you think you’ve heard it all, you get some new excuse.
I think you do a brilliant job of raising awareness, showing the reality of life with your conditions, sharing your experiences candidly, supporting others. It’s people like you who make such a difference and are doing it despite the daily struggles of those very conditions you’re raising awareness of. You’ve educated me in ways that just reading about TN on a health site wouldn’t. I know I won’t be the only one. You’ve made me feel less alone with my own experiences of pain and migraines.
I’m glad you’re in the online world doing exactly what you’re doing and I hope you never, ever think differently. I’m so sorry you had such comments – it shows how ugly some people can be, how pathetic too when they want to poop all over someone else just to make themselves feel better. And jeeees, making suggestions as you do are just that – suggestions. Things that others may find helpful, or things you’ve found helpful. They won’t suit everyone, just like any one medication won’t suit everyone. You take what helps, leave what doesn’t. You don’t poop all over the person trying to help and share their experiences. Being upset by those comments doesn’t make you “too sensitive”. I can’t count the times I’ve been told I’m too sensitive, including by my own parents. It’s supposed to be a bad thing, and I’ve felt that all my life. But now, I’ve come to feel that maybe it’s actually a good thing and we shouldn’t be told otherwise. We’re upset because we care. We’re upset because we are decent people wanting to do decent things. That’s not bad at all. It does mean we’re going to get hurt more, but I wouldn’t want to be non-caring just so I get less upset (sometimes I think I wish I were, but in reality I wouldn’t change it). I’m hoping you feel the same because I wouldn’t want you to be any different, Liz.
I’m glad you pressed the publish button. You keep being YOU. And keep venting too, because I don’t really see it as venting at all but more of a public service – you’ll find others who’ve been through similar and are nodding along to what you’ve said like I have!
We love you, Liz! Screw the meanies, they might (or might now) grow up and grow a heart one day.
Caz xxxx
Caz, thank you. I appreciate your comment so much.
Scoliosis is often found between the ages of 10 and 15 (mostly in girls). Later in life, it can be caused by osteoporosis. You are so right though, we are all fobbed off too much. I would rather be seen by a doctor who holds their hands up and admits they don’t know enough about something than just bluffs their way through. The person who always suffers is the patient.
I think I had to write this post just to get it out of my system. I did think I might be over-sensitive, but you’re right, it’s because I care. And I certainly wouldn’t want to be a non-caring type of person.
I think people who write about chronic illness are more likely to get the brunt of someone’s bad day if they don’t like what we write. But I just wish they would take a second and remember that we’re human, with feelings. I imagine lots of bloggers have had something similar.
(I did laugh though. I clicked the profile of one of the people who had commented. It said, ‘working to be a better person.’ I wanted to write, ‘you need to try harder.’)
Thank you again, Caz. Your words are very much appreciated.
I’m so pleased you decided to publish this post rather than the delete button. Thank you for raising awareness about scoliosis and trigeminal neuralgia. I used to be a sport therapist so know about scoliosis and how debilitating it can be but also know how the general public don’t have any or much knowledge about it at all. I have a friend who also suffers from trigeminal neuralgia – before meeting her I had never heard of it. Thank you for all your posts to help raise awareness and provide helpful tips for those also struggling to help provide relief. I can relate to the time and effort it takes to produce each individual post so everything you share is really appreciated, thank you. I’m so sorry you dealt with those negative remarks. That’s the downside of social media and sharing information on the online world – you’re never going to please everyone and I know how disheartening it can feel to receive them after the time and energy it takes to produce these posts. I know it’s so much easier said than done but focus on all the other people who are comforted and helped by the information you share and know that they’re not alone in how they feel and what they’re experiencing. Take care. Lucy