Life with Ankylosing Spondylitis: Where To Run If Your Body Is A Burning House?
Ankylosing Spondylitis (AS) is a lifelong autoimmune disease that attacks mostly your spine and joints. Well, that is what every other web-site on the Internet tells. I am here to tell you what it is really like to feel your own body, basically, become a trap, a villain of the story with no possible escape.
I was diagnosed with AS during the 18th year of my life. Prior to that, I left behind 2 difficult years of searching, finding nothing, cursing Ukrainian medicine and everybody around me. I remember doing blood tests every week, knowing nurses by their names, and sliding into the MRI machine like it was my second home.
It all started with my swollen right knee, then my left knee, then neck and jaw pains. Now, I want you to understand, that medicine in Ukraine is nothing like medicine in Europe or the USA, that is why I had to do 8 knee punctures before realizing that there was nothing wrong with my knees or jaw, or neck. The disease comes from within — my own body is gingerly destructing itself. Or not so gingerly. I was 16 when it all started, of course, I hadn’t had the faintest idea of what was going on. Coming from a family of doctors, I was assured that it was merely a physical trauma that, in the worst case, demanded knee surgery. My life was completely fine. I was a member of a famous Ukrainian dance group, a valedictorian of my school, and a friend to everyone. I had my poetry collection published and was preparing for university life — the next chapter of my wonderful story.
Wonderful? Huh. Hold on. That is where it gets interesting. After meeting a dozen of bribed Ukrainian doctors who told me that I was disabled and my life was soon to be over and I was, obviously (to them, not me) doomed, I finally met the specialist I trusted. In his cabinet, I heard the diagnosis that I feared the most: Ankylosing Spondylitis. “Mild form. Something really weird. Well, yes, your blood test is fine. Your MRI is too. The answer is the same— AS”. Don’t get me wrong, I am not the person who would argue with the doctor or question his verdict, but at that time I simply could not accept the fact that all my life I have been living with the beast inside of me.
Before being diagnosed with AS, I have taken methotrexate (geniuses of Kharkiv city were completely sure that I had rheumatoid arthritis, although afterward, every doctor in Kyiv said that it was nothing like it). If I am being honest, methotrexate obliterated 6 months of my life by causing endless nausea and depression. I had to do injections myself. MYSELF. I have always been afraid of needles, any kind of vaccines, and blood tests. Now I get to inject myself. Well, great! It was a hard time. When stopped taking it I promised myself that I would never return to that treatment ever again. Not in this life. So, you can imagine how I felt, sitting in the cabinet and thinking that in a moment or two I will be back to my methotrexate story. Luckily, I set my record straight and said that there would be no such thing. I remember that moment very vividly. I was scared to death.
The doctor came with a different solution — biologic therapy, a new name in Ukrainian medicine, a whole new chance to live fully. I became even more scared (you can tell I am not a brave one when it comes to treatments). After days of trying to accept what was waiting for me, on the sunny day of the 4th of September, I had my first injection of an expensive as hell treatment. I remind you — 2 years of suffering and not knowing.
My knees felt better 24 hours after the injection.
2 years came down to 24 hours. I couldn’t believe it. While I was celebrating and discovering what it feels like to live without pain again, I had one annoying thought at the back of my mind — I was afraid of getting back to the state I had been in for such a long time. I was afraid of getting back to an inability of walking without limping, sleeping without a sore neck in the morning, chewing without pain in my jaw. Who am I deceiving — I am afraid of it even now while writing this story. Of course, there is always a place for happiness that my treatment has brought to me but I cannot forget about the possibility of coming back. I guess I’m in it for life, so it is time to accept and enjoy my journey as it is.
My AS story is not over, nor will it ever be. It will follow me at my every step, reminding me that nothing comes easy and everything is not what it seems. For example, average knee pain can turn out to be a lifelong disease with treatment that has lots of side effects (the main one is simple — constant fear). Although my words appear to be dreadful, I am utterly, extremely, wholeheartedly thankful for this journey I am on, for this house on fire (which happens to be my own body) that I am bound to douse each day. It is hard to believe but I am even thankful for the doctors who do not know how to communicate and do their jobs — they taught me that it takes a lot more than just having a diploma. It takes courage and bravery to step on this path that is pierced with pain and fear, and uncertainty.
It took me 2 years to realize that there was nowhere to run from my disease. Moreover, I am still accepting the things I may come across in the future since no one really knows what my body will do next. The one thing I am pretty sure about — as long as I have courage, I will be fine. As long as I’m taking my treatment, I will be okay. There is no right or wrong in having AS, there are only your own path and your own story that, believe, is worth living. I remember reading other people’s stories and seeing phrases like “my disease does not define me”.
I think it does.
It defines me as the strongest person I have ever been.
It defines me as a fighter, a game-changer, a risk-taker.
It defines me as a person who has been through a lot but is still standing and is not planning on giving up.
Ankylosing Spondylitis (AS) is a lifelong autoimmune disease that attacks mostly your spine and joints. Nobody ever speaks about it, but it also attacks your soul and makes it bulletproof. Being on fire is pretty tough, I must admit. I mean, you basically feel your joints burning up. Nonetheless, I wake up every day feeling thankful that I am alive. And walking. And sleeping well. You are probably thinking: “Yeah, she’s okay now but who knows what the future holds?”. Well, I don’t think I am ready to answer your question and that’s what I will say instead:
I am ready to fight. Having lived in the midst of hardship, I know that I will make it through.
For my fellow AS-fighters — I know it is hard and unbearable. It will get better though. You may not be so sure about that but my story will tell you otherwise. Life is worth living. Even when your body becomes a villain. We all know that villains always have the possibility to turn into heroes, right?
I fight with you. Every single day.
Feel free to contact me any time to talk or ask whatever you want:
Instagram @anastasiyadenysenko
Gmail anastdenisenko576@gmail.com
