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Finally Meeting Some Super Spoonies

When I was first diagnosed with an arthritic condition, I felt very confused and alone.

I always thought arthritis was a bit of knee pain that my grandmother used as an excuse to get out of taking me to the park. I had no idea that young people could be diagnosed with it. I figured the arthritis community had a strict age policy for membership and did not invite people in their 20s. I was about to discover that this is a myth that society had lied to me about.

The pamphlets I was given upon my diagnosis certainly didn’t help. All the photos inside them were of elderly people. It made it much harder to accept my diagnosis as I couldn’t relate to people I was seeing with the condition. It made me feel I was the only person unlucky enough to have these health issues before reaching retirement age.

There were some links to support groups inside the pamphlet. I felt that they would probably be an age gap that would make me feel out of place, so didn’t make any attempt to attend one. Okay I’ll admit it -  I did toy with the idea of turning up on the off chance there may be some nice older ladies there. But ultimately, I decided that searching for silver haired foxes was not the right reason to attend! I opted to lock myself in a chronic closet and go at this journey alone. Something that proved to be extremely challenging.

Then the pandemic happened...

For years I had never met anyone in person with ankylosing spondylitis. Whenever I spoke to people about it, they did not even know how to pronounce it, let alone know what it was. This made me feel a bit embarrassed about my situation and I closed off that part of my life and went on suffering in silence.

It wasn’t until the world shut down for the pandemic that I started being more open about my conditions online & found that there was a huge number of people my age going through the same things as me. Seeing that I wasn’t alone in this was mind blowing and really helped me come to accept my diagnosis and stop feeling like an arthritic outcast.

Before this I used Instagram solely as a platform to post my holiday photos with cringey captions (something I still do mind you) but this changed my perspective completely. I began using it to speak to other AS warriors, learn about their stories and how they cope and also tried to share a bit of my wisdom (if you can call it that.)

The chronic crew

I formed friendships with some amazing people. I must give an honourable shoutout to Safia and this community’s very own Fiona Olegasegarem (please come back to writing soon we miss your wonderful positivity!)

We started a group chat called the "Chronic Crew" to support each other and send one another advice, good vibes & inappropriate jokes (mostly me) to help us all get through the brutal pandemic.

I’d never really had more than a sympathetic head nod when talking to non-spoonies about some of the things I go through. So being able to speak to people who completely understand my situation was life changing.

Our compromised immune systems meant meeting in person was impossible until 2 years later when the risk of death from COVID was significantly lower. We finally managed to organise a get together for lunch in Chinatown. I was so excited to see the girls that I didn’t even mind that the meal clashed with the first England match at the World Cup! We had such a lovely time catching up and making jokes at our chronic conditions’ expense that I did not even pause to check the score until I was on the train home!

Final thoughts

In a messed-up way I’m glad life dealt me these cards as it has given me the opportunity to connect with so many amazing people. I’m ever so grateful to have so many of you wonderful people in my life. I do hope I will be able to meet up with more of you guys in future. There are so many people out there that have helped me so much on my chronic journey and I’d like to thank (and probably embarrass) them all in person at some stage!

So if you feel alone with your chronic illness, I assure you that is not the case! Don’t be scared to reach out to other members of the community. We’re all in this battle together so do drop someone a message. Even if it’s me - I’m slightly less terrifying than I look I promise!

Remember that although your AS might not have your back, your fellow spoonies most certainly will.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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