My Chronic Illness Shaped My Future Before I Had the Chance To
I was 18 years old when I developed ankylosing spondylitis. At the time, I was in my first year of university, learning to be independent and learning about myself. As many 18-year-olds are, I was undecided on a future career, but eager to figure things out along the way and see where life would take me. My future was a wide, boundless, blank space, waiting to be filled.
The uncertain future came into focus
Becoming chronically ill changed that. The uncertain (but exciting) future ahead of me suddenly came into focus — no, I still didn’t know my future career, but I did know that I would be chronically ill indefinitely. When I graduated from university, I would be chronically ill. On my wedding day, I would be chronically ill. For every experience and opportunity that lay ahead of me, I would be chronically ill. Sometimes, it’s nicer not to know these things, but chronically ill people don’t have a choice. Receiving my diagnosis felt like accidentally reading the spoilers for the book of my own life — a book that I planned to write entirely on my terms, but didn’t get the chance to.
While I was adjusting to dealing with AS day-to-day, I also had to accept its implications for my future. There were so many things that, all of a sudden, were out of the question. For example — I hadn’t specifically dreamed of climbing Mount Kilimanjaro, but before getting AS, at least I could have if I wanted to. AS eliminated climbing Mount Kilimanjaro from the dream pool. The rest of my life went from being a limitless cloud of wonder, to a cloud that rains painkillers and has some definite boundaries.
My friends and family talked about their plans
From inside a body that attacks itself, I listened to my friends and peers talk excitedly about the intense, demanding careers they wanted to pursue and backpacking trips they wanted to go on. I knew my options weren’t so infinite. I knew from now on, my health would always come first. While others will push themselves to advance their careers, my body will break. No amount of drive will make up for the flare-ups and fatigue that will inevitably affect my productivity. At 18 years old, you’re told to reach for the stars, but I can only reach as far as my spine allows.
Now, don’t get me wrong, I’m still excited about life! Yes, AS changed my future by limiting me in some ways, but it also expanded my horizons. Learning to cope with my illness taught me strength and determination that I never knew before, which I can bring with me into my future. I also gained an interest in disability issues — something I was ignorant to before — which led me to take a course in disability studies and consider a related career. I also became a writer for Ankylosingspondylitis.net, which has helped me develop professionally. Having AS sucks — but it has ignited a passion within me that I can use to build my life.
My future looks different
My future — the glowing, unconfined cloud I saw when I was 18 years old — looks different now. Many potential experiences have been ruled out — like living in one of those renovated vans, going to a standing-room-only concert, or wearing heels to my wedding. I lost the freedom of leaping into my future with my eyes shut; I must live according to AS now. But hopefully, in between the flare-ups and doctor’s appointments, I will create a life that I love and write a story for myself that my chronic illness didn’t see coming.
How often do you experience flare ups?