In my 7 years of living with Ankylosing Spondylitis since the age of 21, I’ve had to teach a lot of people quite a few things about my illness. It’s a relatively unheard-of form of arthritis in day-to-day life. Most people have heard of Rheumatoid Arthritis, but not usually Ankylosing Spondylitis (AS)

I want to share 3 things I wish people knew about AS!

Yes, Ankylosing Spondylitis is a form of arthritis that primarily affects the spine. In my case, it affects my pelvis, too. AS is so much more than that. I experience many more symptoms on a daily basis, and my entire body is affected too!

The thing that differentiates AS from other forms of arthritis, and even just back pain, is that over time, the vertebrae in the spine will start to fuse. It causes damage to joints and limits mobility. It can make it harder to do daily activities like cleaning, or for some, even something as simple as turning your neck to the left or right. I know someone who had to give up driving because of the damage done to his neck. 

Fatigue is also a huge part of my daily life with AS. Because of everything going on in my body, I get fatigued really quickly. If I do something as simple as showering, it tires me out. Depending on the day, activities will affect me more or less. If I go out for a day, or even just to the mall, I get very fatigued. I need a lot of rest, which I’ve learned to interpret as being productive. Listening to your body is self-care, and can go a long way!

Since becoming ill with Ankylosing Spondylitis when I was just 21 years old, my entire life has changed. Socially I have lost some friends who didn’t understand or couldn’t “deal” with my illness. I’ve also had to change how often I see friends, or what I’m able to do. For example, a lot of twenty-somethings are going out to bars and clubs, whereas I can’t do that anymore. It exhausts me to be out of the house for more than 2 hours doing anything. Instead, I prefer a quiet night in with close friends watching tv or just chatting. 

Modification has been a big theme in my life with AS. I’ve had to modify just about everything. 

Financially, I had to quit my job at a restaurant and haven’t been able to work full-time or outside of the house since. I’m now a writer and content creator, but I still need to live with my parents because I can’t make enough to move out on my own.

Home life is difficult as well. With the amount of fatigue I experience on a daily basis, it makes it hard to do chores around the house, or even keep my room clean. I struggle with self-care as well. I try to shower and wash my hair at least twice a week, and I try to do things like brush my hair or teeth as often as my body allows me to. I feel like a lot of people don’t realize how hard self-care is with a chronic illness.

A lot of times when people on Instagram see me out and about doing things, they think I must be feeling better. The truth is, a lot of times I just have to push through what my symptoms are to do what I want to do. I have to accept that I will suffer more later in order to do the things I want to do. I will experience more pain and fatigue after going out, let’s say to a fair, and I do that in order to help my mental health, in exchange for my physical health. 

There are many things that I wish people knew about living with AS, but these are the big 3!

Author Bio: Steff is a blogger and content creator from Mississauga. She loves raising awareness and helping others navigate chronic illnesses. In her free time she loves to listen to music, play video games, watch reality tv, and go for bike rides (when she can). You can find her content and more on Instagram @totallyfunkless!