Your stories. Real life experiences with Arthritis.
We’ll post a selection of stories from members of our community. Contact us to tell us yours.
Arthritis is a well known disease, but perhaps not well understood. A daily reality for millions of people in the UK, affecting the lives of both the young and old. The sometimes lack of perceived ‘obvious’ physical disability can throw up challenges, particularly when going about your daily life. Everyone has a story to tell, and we want to know yours.
Interestingly, as I write this story I can’t look to my left. Those of you who have suffered with arthritis in the neck will know what I mean. To others, my movement suggests I’m wearing an invisible neck brace!
Anyway. My aches and pains (as my Auntie used to put it!) started when I was 13 years old and went unofficially diagnosed until I was 25 where it was discovered I carry the HLA-B27 gene, common in Ankylosing Spondylitis (AS). That time scale alone highlights something most people probably don’t realise, arthritis is not always easy to diagnose. In fact, people with AS typically suffer an average 8-year delay before getting their official diagnosis.
Growing up through those younger years became very challenging. I’ve always been very sporty, however sitting out school PE classes or not performing well for my local football team became the norm. I always knew this was the result of my arthritis, but getting others to understand that was, and still is the biggest challenge I face. I regularly tell people who haven’t seen me play that I could have been professional if it wasn’t for my arthritis. Of course, this is a huge fabrication of the truth, but they always seem to accept the bullshit!
I definitely struggled to come to terms with being discretely different to my peers, and being labelled as ‘lazy’ by coaches and teachers!
I find now, pain is something that has become part of normal life and the idea of not having it would be strange! The pain moved around a lot more between the years of 13-21. During flare ups, I suffered badly in my ankles, shoulders and upper buttocks. Not being able to walk and enjoy things you should at that age is never easy. I spent a gap year in Canada for the ski season which had an adverse effect on my symptoms. The saddest part of this was having to return home early. Gradually as I’ve become older the pain has become far more focused on my back and neck which is more common with AS.
Every treatment in the book has been tried, including Chinese herbal medicine where I was told it would cure me forever…it didn’t.
I still play 11-aside football and the older I am the easier it is for me to be creative with my ‘injuries’ to avoid explaining my condition. The key is I’m still playing football because learning to manage the pain and cope with it is such an important part of living a normal life.
Keeping active, especially when having a flare up I find crucial to staying positive. You learn to summon up an inner belief that you can fight back, even when it seems impossible to get out of bed. Combining this mentality with a somewhat healthy diet and looking after myself have provided the basic platform to build on.
My inspiration for starting this site is not only to create a community where we can all learn from each other but also to generate advice and lifestyle tips that can benefit us all. Hopefully, with big enough support we can begin to put pressure on membership organisations and brands to think about how they also can help us.
Thanks for reading