Story
Quick Headlines (more below)
- I used to have hair and all of a sudden, I didn’t.
- Going from haired to hairless in a few days really f**ks you up.
- Support, awareness and research of the condition (Alopecia Areata) are very bad. Alopecia UK are trying to change that.
- In March (maybe April if it's cold) I’m going to cycle up and down a mountain in Spain a lot. Equivalent to the height of Everest in fact.
- You are going to give me money for doing that.
- I am going to give the money to Alopecia UK.
Here’s a personal ‘sad story’ to garner your sympathy and get you to open your wallets. Feel free to ignore it and go straight to the big donate button.
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I never really thought about my hair that much. That changed in the space of 5 days last October when it all fell out. Then I started to think about it quite a lot.
Since those few days, I’ve learned that I suffer from a rare form of Alopecia Areata. An autoimmune condition that causes your body to attack the hair follicles. I’ve lost all the hair from my head and much of my body. My beard fought on for a while but recently lost that fight. The moustache and, in a cruel twist of fate, the shoulder fuzz remain strong. There is currently no cure although treatments do exist.
Losing your hair in the space of a few days in October, or any month I imagine, is rather tough. Yes, ‘it’s only hair’ but it’s also a lot more than that. The mental health and psychosocial impacts are devastating. At first, I tried to take it in my stride. I find that in life you can laugh or cry in most situations. I go for the first option as much as possible. I smiled and joked through for as long as I could but eventually, it caught up with me.
I spent weeks hiding from the mirror. It’s not just your appearance, it’s that when you look, a stranger is staring back at you. Every moment is spent worrying about how much more you’re going to lose. I didn’t want to leave the house. I lost confidence and social skills. For a bit there I lost hope for the future. The struggles led me to a pretty dark place but over time I'm getting back to being a bit more me.
Support and treatment for Alopecia is, in a word, a bit shit. Securing an NHS appointment with a specialist can take over a year. Unacceptable when it's known that early intervention significantly influences outcomes. Drugs now exist that are proven to help in restoring your hair, having a huge impact on mental health and quality of life. The NHS won't fund them. Instead, they offer a cream and a wig. For a condition that is proven to greatly increase the risk of suicide and self-harm, it needs to be better.
It’s reasons like this that I’m supporting the work of Alopecia UK.
I came across Alopecia UK a few weeks after I was diagnosed. I don’t love showing I’m vulnerable to random folk. But, on a particularly tough Monday morning, I gave them a call. I opened ‘I have alopecia, I don’t really know what I want from this chat’... In hindsight, it was the beginning of me starting to move forward. She told me her story, and I told her mine. She was the first person who just got it. I didn’t need to explain why I was struggling so much. I didn’t need to explain the fear and anger and sadness. The fact that it wasn’t just hair. The annoyance at friends and family for saying the wrong things, or the right things at the wrong time. I learned more about the disease and the system that continually fails the patients. I learned that my struggles were not unique. I felt less alone and a little bit better.
Alopecia UK is a small charity with a small budget yet, is the largest Alopecia charity in the UK. They focus on supporting and informing sufferers, raising awareness, advocating for patients and funding research where they can.
To help them in their goals this March I’m cycling up and down the same mountain in Spain until I reach the height of Everest - 8849 metres. It’s not going to be fun. I do love cycling but I do not love cycling up and down the same hill for 15 hours.
For me, I feel lucky to be able to try the latest treatments privately. For many, that’s not an option. My hair might grow back and it might not. I might lose more. It’s something I deal with some days better than others. Whatever happens, I’m hoping to use my experience, and your money, to make it a little bit less shit for people in the future.
Thanks 🙂 Money please :)