I’m posting this a bit late but – life! I wanted to write a bit about scoliosis awareness day 2023 and what I got up to. Every year (pandemic aside), there is a scoliosis event in London, organised by the Scoliosis Association UK, for scoliosis awareness day. The purpose of this event being to celebrate scoliosis and to bring people with scoliosis together to chat and support each other. Every year, I see this event happening on social media, but I’ve always been too scared (or maybe nervous is the right word) to go.
I know that probably sounds daft, but the thought of seeing and speaking to others in ‘real life’ with scoliosis and spinal fusion still makes me feel a bit emotional. Anyway, this year, I saw the event pop up on Instagram and I thought, you know what, I’m going to go! I was free that day, so why not? I was a bit nervous, but I bought my ticket, booked my train and immediately felt excited but scared.
A couple of weeks before the event, the Scoliosis Association UK contacted me and asked me to SPEAK at the event, to share a bit about my scoliosis story, my social media, and my fundraising trip to Machu Picchu later this year. When I received that email I had a ‘pinch me’ moment. Sometimes, I really cannot believe how far I’ve come with all this scoliosis stuff, from hiding my scoliosis and pretending I didn’t have it when I was 14, to now being asked to actually speak at a scoliosis event in London, in front of a room full of people.
I must admit, even the thought of doing something like this was wayyyy out of my comfort zone (I’ve always had a fear of public speaking despite my YouTube videos!) Initially, I was going to politely decline, but instead I thought, let’s show my 14 year old self how strong I can be. And I said yes. I spent the next few days panicking, (and practicing what I was going to say!)
The day eventually came and I headed to London and to the event (by myself I might add, which I personally thought was brave!) As soon as I entered the venue, I was greeted by Natalie from Scoliosis Association and she recognised me from my social media. It was so surreal that she knew who I was!
The day itself was really interesting and inspiring. There were several talks from various scoliosis specialists, including a scoliosis surgeon and scoliosis fitness experts. There were also a few inspiring scoliosis stories too, which were lovely to hear and some brought a tear to my eye. I spent most of the day feeling anxious about speaking, but in the end the event overran, and so there wasn’t enough time for me to do my talk – just goes to show what little point worrying does!
I was a bit disappointed as I had built myself up quite a bit (god I HATE anxiety), BUT I’m proud of myself for being brave enough to say yes, and for putting myself out of my comfort zone. It’s made me realise that I could do it and I would really love to speak at a future event about scoliosis and potentially help others with my story! I think saying yes for me was in fact the hardest part.
In terms of the talks on the day, there were some really interesting topics covered, including a scoliosis surgeon talking about the challenges of life after scoliosis surgery. This included a discussion on the importance of scoliosis and mental health, and how there needs to be better support out there for those going through scoliosis surgery and dealing with scoliosis in general.
This particular surgeon said he makes a point of making sure his patients are doing ok mental health wise post surgery, and this surprised me (in a good way!) as there didn’t seem to be any thought to mental health when I went through my own scoliosis surgery. I felt like giving him a hug when he said that!
It brought it all back for me a bit, as I struggled a fair bit with depression and anxiety both pre and post surgery, but it was never really talked about back then. I’m glad that things are starting to change in that regard, it’s so nice to see the effects of scoliosis on mental health being taken seriously.
There was an interesting talk about braces and how much they have evolved/improved over the years. Even in the years since I had my scoliosis surgery (in 2010), it seems like more can be done now bracing wise, even for some larger curves.
There was also a talk by a physiotherapist who spoke about how scoliosis affects the whole body, including a visual representation of this, which made me feel SEEN. As I have suspicions that a lot of the issues I get with my right leg and constant injuries from running/exercise is likely down to scoliosis and misalignment.
One thing that I absolutely loved was when someone in the audience asked one of the speakers why they use the word ‘deformity’ to describe scoliosis in the medical profession, and how offensive it is. This was a moment where I thought, YES I’m not alone! I have ALWAYS hated that word, imagine how it feels to a teenage girl hearing Drs and surgeons calling her scoliosis a deformity. It really damaged my self-esteem to be honest and it breaks my heart thinking back to how I felt back then. I used to cry and call myself deformed because I’d heard the Drs saying it. What pleased me to hear was the speaker (who I think was a Dr) said that he agreed, and that they have recently made changes at his hospital to change the clinic name from spinal deformity clinic to spinal clinic. That makes me happy – onwards and upwards!
It was interesting to see the variety of people in the room as well and varied ages, from teenagers to people in their 20s/30s and 60s/70s. There was one lady there who was 76 and had very severe scoliosis, never had surgery or any treatment and she was struggling to walk. Despite this though, she said she had no pain! In a strange way, seeing others at the event made me feel grateful about my own scoliosis, yes I have pain, numbness etc but in many ways things could be a lot worse.
It was also lovely to see people connecting and helping each other. One lady came up to me during one of the breaks as she recognised me from Instagram, she watches my scoliosis videos on YouTube and she said I’ve helped her. Just that in itself was so amazing and made me so happy. Another pinch me moment! I also met a few people that I myself have followed on social media for some time which was exciting.
Overall, I really enjoyed the event and I would recommend these events to anyone affected by scoliosis in the UK. I’m so glad I pushed myself to go. It was nice to meet others with scoliosis, but it was also really educational, and I learnt quite a bit. I hope to go the next one and who knows, maybe I’ll even get a chance to speak next time. 😀
Let me know if you can relate to this post, or have any questions in the comments below!
I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.