Ghosts are emerging from the pages of an open book.

New Chapter, Same Disease

Last updated: January 2021

I am almost 22 years old and entering a new stage in my life. It’s a period of big changes and big decisions. My peers are starting their careers; some are getting engaged and buying houses. “Getting married and having kids one day” doesn’t feel like “one day” anymore — it feels like soon. Personally, I’m not in a hurry to launch into full-fledged adulthood. However, as my friends and I begin to chisel out our respective places in the world, it’s impossible not to imagine all the big changes that are going to happen in the next 10 years of my life…and wonder how my autoimmune disease is going to fit in.

I know how ankylosing spondylitis (a type of AxSpA) affects me now, in my current 21-year-old life. I am well-versed in taking university courses and going to bars with AS. But what comes next? What about attending my friends’ weddings with AS? What about my own wedding? What about turning 26 and aging out of my province’s prescription coverage? What about having kids with AS? Not a single one of the new milestones that lie ahead of me will be untouched by my illness.

I googled how long a wedding ceremony is

Today I googled how long a wedding ceremony lasts because I can’t stand in one place for very long. I’m scared that I might have to tell a friend I can’t be in their wedding party for that reason. I was relieved that google said about only 30 minutes — which will still be hard for me, but I’ve already accepted that I’ll have to take steroids a few days before big events to make it through. I’ve also googled whether my medication is safe during pregnancy, because stopping it would be disastrous, and I’m planning my future career based on jobs with good benefits so I can afford my medication. Chronic illness has a way of taking the magic out of an exciting time in my life.

A carefree attitude is incongruent with AS

I also sometimes feel like I’m not making the “most” of my twenties because of the restraints presented by AS. The stories people tell of their twenties — stories of poor decisions and spontaneous adventures — set off the AS alarm bells in my head. The typical carefree, enjoy-your-twenties attitude is incongruent with being chronically ill. As much as I would love to dream big and go with the flow, pain management will always have to be my top priority. It’s difficult to feel like my options are limited in a stage of my life that is meant to be limitless.

Moving into adulthood will look a bit different for me than it will for my friends. My illness will follow me into every new chapter of my life, like a ghost that lurks over my shoulder at birthday parties and job interviews. Picturing myself in 5, 10, or 20 years also means picturing my disease’s 5-, 10-, and 20-year progression. Although it’s scary, I know that I will adapt, and I hope to start my career and family alongside my peers. I will learn how AS affects me in new situations, new places, and around new people. Like most 21-year-olds, I don’t know where I will be in 5 years, but there’s only one way to find out.

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