Ankylosing spondylitis is not a competition – seems pretty simple, right? It is is a cruel condition. An invisible disease. If you read this, you probably live with it and endure it in your individual way. There is no one piece of advice that can apply to everyone, as everyone has different tolerances, and everyone’s condition develops in different ways. However, we all need to do the most we can to try and keep healthy.
There does seem to be an age gap developing within the community. Unfortunately, I have noticed an increasing trend in this statement, “you are young and therefore lucky.”
As if age is suddenly a cure for a disease that has no cure.
Yes, maybe we are lucky that we were diagnosed when younger. We have better access to medication than ever before. We can learn about the disease when still young, and develop along side it.
At the same time, we have had our youth robbed from us. I have spent more days/months in hospitals, MRI/ X-Ray machines, and being bed bound than I have ever spent at parties, social events, or going out with friends.
Secondly, the importance of exercise can not be over-stressed. “Use it or lose it” is a mantra that I wholeheartedly support. Some people have the ability to do more exercise (such as myself) and for some people it is a mission to go for a walk. One thing we do have in common though is pain: we are all in pain.
Pain that most people can not imagine living with on a day to day basis. I am a seemingly very active, healthy, outgoing 22 year old. Yet, on a nearly weekly basis I am close to vomiting due to the amount of pain I am in. Just recently, I was nearly brought to tears while standing at a climbing competition watching others climb. Not due to the amazing performance in-front of me, but because of the fact that it felt like someone was smashing my hips/SI joints with a hammer.
There is a fine line to be trod when it comes to exercise, over-training, injuring yourself, or just making your overall condition worse, and it is the responsibility of every individual to find their own limits.
With that, everyone can have their own goals.
No matter how big or small they may seem to the outside world. Going for a walk, doing some yoga, or any other form of exercise is both overcoming pain, and benefiting you physically and mentally.
Lastly, we all want support and understanding. All of us. We are the people best suited to give that support, that moral boost, that “well done”, “keep going”, “that’s awesome”, so why not give it? Let’s all keep pushing each other forward, together, instead of competing at who has it worse.
We, as a community, have to dispel this attitude of competition from the AS community. The promotion of exercise is crucial. At the same time the promotion of exercise is not a personal attack against someone’s condition.
Everyone is different. Everyone deals with it differently.
Max is a 22 year student who always competed at sport, and since he was diagnosed at 17 he has continued to be as active as possible. AS does not stop him from travelling the world, climbing, running (and a host of other activities). In fact, he believes that this has helped him tremendously both physically and mentally, and he hopes to be able to follow his passions for a very, very, long time. You can find Max on Instagram or on the YouTube.