I was diagnosed with Ankylosing Spondylitis (AS) when I was 20 years old which means that I was diagnosed 21 years ago. I was young and many thought too young for arthritis. When I told people I had Ankylosing Spondylitis they would hear me say arthritis and think of their grandparents and not fully understand the severity of my disease and the risks that come with it. Ankylosing Spondylitis can often be an invisible disease in young people and if you’re fortunate, even when you’re older too. There are so many layers to Ankylosing Spondylitis. A pain layer. A mental health layer. A risk assessment layer. A self advocate layer. A symptom management layer. A medication layer. A side effect layer. Very few people get to see any of these layers while they all play an active role in my day to day life.
Exhaustion isn’t always visible because sometimes the mind is ready to go but the body wants no part of it. When I was in my twenties, I felt a lot of pressure to go out when I really didn’t want to because I was tired. People thought I was a home body but I was actually a sick body. Stiffness, rib pain, spine spasms are other examples of physical symptoms that can go unnoticed. Anxiety and depression aren’t always visible either. Talking about my disease often felt like a heavy topic because there is no cure and it isn’t straightforward. The anxiety I felt about being diagnosed with a serious disease that I had never heard of was overwhelming. My anxious mind infiltrated every aspect of my life. I questioned whether my life would have to change, how quickly would the disease progress, whether or not I would be the worst case scenario, etc. I also felt very sad that I had been given this fate at such a young age. I definitely played a role in trying to keep my Ankylosing Spondylitis invisible which only made me that much more exhausted. Sometimes it wasn’t even a matter of wanting to hide it. It just never felt like the right time to talk about it. I didn’t let any of my university professors know and many of my friends had no idea that I was struggling with a chronic illness. I regret that and if you’re young and have Ankylosing Spondylitis and are reading this, talk about it. Share your story. Your symptoms are legitimate even if they aren’t visible. Facing Ankylosing Spondylitis at a young age made me stronger because it helped me understand how quickly life can change and it really taught me to appreciate the little things.
Now that I’m in my 40s, I have no desire to keep my disease invisible and I see the value in raising awareness and sharing my story. I also don’t have the same spring in my step so my Ankylosing Spondylitis has become physically visible. Self-acceptance has brought my disease out from the shadows and I’ve learned to show myself love and compassion. Bringing awareness to Ankylosing Spondylitis is so important because the more people know about the disease, the more visible it becomes, and the more supports become available both within the community and within your own social circles.
Ankylosing Spondylitis also felt like an invisible disease because 20 years ago, people didn’t post on the internet and there was very little information out there about it. I didn’t realize all of the communities that have developed online on Instagram, Twitter and Facebook since my diagnosis and I think it’s amazing that there are so many community supports out there for those of us with Ankylosing Spondylitis or any autoimmune disease. Ankylosing Spondylitis awareness is well on its way but it hasn’t reached enough of the general public yet. Many people still aren’t really aware of Ankylosing Spondylitis but the fact that there are communities of people out there now who understand what I go through on a daily basis is huge progress because it’s a good feeling to know that I’m not alone.
There is still lots of work to be done on the awareness front. Many people don’t understand our day to day and the risks we face with our medications in order to simply function and have a better quality of life. I have been in the room when a biologic commercial has aired and people laughed and said “who in their right mind would take that?” I do, and it’s not funny. The side effects are scary but that’s how serious my disease can be. So instead of laughing and thinking “who in their right mind would take that?”, I’m hoping that eventually there will be a level of awareness about autoimmune diseases so that the snide remarks will be replaced with a sincere understanding of the risks that so many of us with autoimmune diseases have to face.
There are many people fighting their autoimmune disease battle in the shadows. I want you to know that there are a lot of supports out there through group meetings, online communities, arthritis organizations, webinars and blogs. This disease doesn’t have to remain invisible. I hope you will consider sharing your story because I personally would love to hear it. Through awareness there is hope and when there is hope there is purpose.
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