I Went to an AS Support Group
I’ve always been scared of “groups," as I have major social anxiety. Group anything is terrifying for me. Little did I know, an AS support group was exactly what I needed.
Finding an ankylosing spondylitis support group in your city
I live in a suburb outside of Toronto, and I’ve been following a page on Facebook called the Canadian Spondylitis Association for a while now. It just so happens that they hold support groups around the country.
More recently, I noticed that they were starting up a support group in my city. I decided to try this, as talking to people who know what I’m going through would be good for me. I figured that the rewards would outweigh the risks on this one.
Connecting with similar people
About a week before the support group, I got a message on my Instagram account. A girl had found me through a medication hashtag and saw that I lived in the GTA (Greater Toronto Area). She decided to message me to say that she was so excited to find someone in the area that also had AS. She’s newly diagnosed.
I sent her the information for the group, and we both agreed that we would go there and we could meet! We met up in the lobby of the building, and the group leader happened to be there waiting for people as well. We all went up to the meeting room as we awaited anyone else to come. There were snacks and tea, coffee, or water for us to have.
What the group is like
The only ever group activity I’ve ever done was group therapy. I had to stop going after about 8 out of the 12 weeks because it became too much for my anxiety to continue. I was expecting something structured and everyone has a turn to talk. On the day of, I was extremely anxious to go.
It turns out that a support group is NOTHING like group therapy! It’s just an open discussion and a place to learn about others in your community that are going through what you’re going through. First, we learned each other’s names, when we were diagnosed, and what we do for a living.
What I learned from the support group
It’s so interesting that everyone with AS has different journeys. A few of the members have had eye symptoms, I never have. I have crippling fatigue, some of them don’t. We’re truly just all going through our own health battles.
Some of us are on biologics, some NSAIDS, some on other treatment plans. One thing I am going to do after talking to the members of this group is reapply for disability. I originally applied through my family doctor, but I’m going to apply through my rheumatologist this time.
Our next meeting
We all agreed the next meeting is going to be a Christmas celebration. We’re all going to bring a member of our family or someone who's been close to us during our time with AS. That way we can learn what it’s like for the people around us to go through as well. I think it’s important to hear from our closes friends and family members about how it affects them, too.
I’m so happy that I joined this AS support group. It’s like a second family, one that completely gets what you’re going through and what you’ve been through. If you can find one near you, I’d highly recommend going to at least one meeting. You’ll be surprised at how nice it is to be able to talk about AS and have everyone understand you. Hey, maybe you’ll even make a new friend like I did!
How much about your AS do you share with others?