I never expected a diagnosis of arthritis at 21 years old. At the time, I was working at a cafe 4 days a week. I was always on my feet and commuting 45 minutes to and from work every shift.
One morning in February 2017, I woke up with severe pain in my right hip. I thought nothing of it. I continued to work through the pain for 2 weeks until I was limping around the cafe and balancing on one leg to get through my shift.
Finally, my manager asked that I go see a doctor. I went to a walk-in appointment the next day and never returned to work. My yearlong journey to an eventual diagnosis of ankylosing spondylitis (AS) had begun.
The day I was diagnosed is a blur to me. I felt relieved and depressed. These emotions lingered for a few months. I never thought the pain I’d been experiencing would follow me for the rest of my life. My diagnosis of AS changed almost everything.
I didn’t know what to think or do for a while. “Dr. Google” was overwhelming and unhelpful. I tried to learn as much as I could about AS, but I learned the most just from living with it.
I started biologics in April 2018. My first infusion didn’t go so well — I almost blacked out while they were putting the line in. My mom had to rush to the cafe to buy me apple juice to chug. Apple juice became an infusion staple for each one that followed.
I was always the youngest person in the infusion room. It’s not exactly common to see a 20-something hooked up to an IV once every 8 weeks for pain management. But this was just the tip of the iceberg of the ways my life changed from having AS.
Different from my friends
My life changed pretty quickly after I first experienced pain in my right hip. I was soon bedridden from my AS flare-ups. My schedule went from revolving around work to revolving around doctors’ appointments. I even used a cane from time to time.
My friends didn’t have to worry about their ability to walk on their own. I had to learn to accept that I was always going to be different from my friends. I needed different things.
I had to stop drinking alcohol because of the flare-ups it would trigger. How many 20-somethings do you know who are sober?
Before my diagnosis, I liked going to bars every so often. With AS, I didn’t have that option — not just because of alcohol but because standing or sitting for too long causes me extreme pain. Being in a public setting for more than an hour is exhausting.
Coping with isolation
AS can be extremely isolating. When I’m flaring, it feels like none of my friends or family can relate. They don’t know what to say, and a lot of the time they just stay quiet. To be fair, I tend to isolate, too, if I’m having a flare, because it’s impossible to focus on anything other than my pain.
I’ve become much more of a homebody than I used to be. In addition to travel anxiety, I’ve developed anxiety about not being at home in case something happens. I feel most at ease when I’m surrounded by the tools and resources I might need in the event of a flare-up. At home I have my cane, my hot packs, my heated blanket, my cat, and my mom to help me through the lows. When I leave my house, I lose all of that.
Putting myself first
I’ve become more in tune with my body and its needs. I’ve learned to put myself first in every situation. I listen to my body. When I need rest, I take a step back and take care of myself instead of pushing myself too far and regretting it.
I’ve found a wonderful community on Instagram for people with AS and other chronic pain conditions. I’ve made friends from all over the world with the same or similar conditions. These are the friends I can turn to when things get hard. They’re the ones I can relate to, and they understand what I’m going through better than anyone else.
AS has changed my life in many more ways than it hasn’t. It’s shifted my outlook on life and altered how I carry myself. While I would never have asked for this disease, it has helped shape me into the person I am today.
Steff Di Pardo is a freelance writer living just outside of Toronto, Canada. She is an advocate for those living with chronic and mental illnesses. She loves yoga, cats, and relaxing with a good TV show. She shares information on her AS experiences on her Instagram and her YouTube channel.