At the time of writing this, August 2021, I am 29 years old. I’m a mum to an almost seven month old baby, after being told that I’m infertile. The font on my phone as I am typing this is absolutely massive, because I’m visually impaired. I live with chronic pain, a condition nicknamed the ‘suicide disease‘, but actually called trigeminal neuralgia. I have blogged about my life for the last four years.
I often receive comments, emails and messages telling me how inspiring I am and, although I know these come with the best intentions, they do make me feel slightly uncomfortable with that label.
I am not inspirational.
I’m just sharing my journey.
We’ve all seen the “inspiration porn”. Pictures of visibly disabled individuals, captioned with things like ‘what’s your excuse?’, always aimed as fully able bodied individuals.
“Paul was born without legs and has completed a marathon, what’s your excuse?”
I don’t want to be that person in my amazing community of people who live with TN. I never want anyone to point me out and say to someone else with trigeminal neuralgia, “she works, she doesn’t take her medication, what’s your excuse?”
I would love to know that maybe I have helped a few people along their journey. I don’t want anyone to feel alone and I want people to feel motivated, uplifted and to know that living your life with chronic pain is possible. But I never want to be the inspiration.
Thousands of people see a very small snapshot of my life. People may read one of my posts where I am struggling horrendously with the pain and think how incredible it is that I have worked full time throughout. Others may just see the post where I’ve written how your pain is worse than mine and know that I don’t have it quite as bad as a lot of other people.
If you live with trigeminal neuralgia or another form of chronic pain, you motivate me to keep writing. If you live with vision loss, to any degree, I look up to you, because I’m always complaining that I can’t see and I couldn’t imagine having less vision and still keeping up my ‘normal’ life.
Honestly, I started this blog to help someone in my position when I was diagnosed with TN 6 years ago and felt really overwhelmed and alone. Then, found the greatest therapy in writing and speaking to loads of incredible people all with the same illness as me. Now, I keep writing just to give something back to the community, to all those who have helped me.
Blogging, working, volunteering and living my life isn’t me being an inspiration; I’m just being me, keeping myself going by getting things off my chest and hoping that we can share our experiences to make it a little easier to navigate through this together.
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