New Chapter, Same Disease

By Cassia Pelton

2 min read

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Arden Doerner Barbour Member
I've been having a lot of these same feelings. I turned 30 in July and since I went to graduate school, I'm only 1.5 years into my career. I'm also only 8 months into my diagnosis. I'm thinking about where I want my career to go, if I want to have kids, etc and my thoughts keep going to uncertainties about the future. It's so unknown what my disease state will be in 5 years. I'm doing well now, but will it last? If it gets really bad, can I stay at my job? Thinking about having children is a whole other can of worms with potentially passing this on. Do I want to wish that on someone else? But you're right, there's only one way to find out!
1. Cassia Pelton Contributor
 Hi Arden! There are so many big decisions to make at this stage in life. The uncertainty is so difficult. For me, I find it helps to look at other people who have this condition and are managing families, careers, etc. It gives me hope - if other people are raising children and reaching their goals, I can do it too.
Jessica Gama Moderator & Contributor
It's scary to think about what life will look like 5 or 10 years down the line with this disease. I'm just hitting my 5-year mark since my AS diagnosis, but really I've been dealing with the disease for over 15 years. I feel lucky that I could manage it to a certain extent, by self-medicating with ibuprofen in my 20s, but that's no longer the case. Whenever I begin a new job (which I recently did), my top priority is the medical benefits, like you said. The second priority is the stress level of the job, along with the working conditions (I cannot fathom starting any job that requires some time on my feet). For the most part, I feel like I'm doing better than I was 5 years ago, thanks to the combination of medications I'm on, along with the techniques I've learned to deal with the pain and fatigue. I hope the same will be true for you!
1. Cassia Pelton Contributor
 Hi Jessica! That's a good point - even though this disease technically gets "worse" over time, we are also learning to manage it better with every year that passes. Also, we don't know what treatment advancements will be made 5-10 years down the road! Hope you are managing alright!