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My First Time Attending an AS Support Group

This month I attended an online meet-up of my local AS support group. It was the first time I’ve ever done something like this, even though I’ve known these groups existed for many years. I’m not sure why it’s taken me so long to make the effort. The group used to meet in person, and I think it was the idea of traveling to the other side of the city that prevented me making a commitment.

Now, because of COVID-19, the group meets online, so it couldn’t have been easier to put in a virtual appearance.

I was the youngest person in attendance (I’m 50 next year) and the only new member, but I was made to feel very welcome by the group. It was easy to join the conversation, which had no real agenda but flowed naturally around people’s current challenges and questions about AS.

A reminder that learning never ends

Being a health coach who works in the AS space, it’s easy to fool myself into thinking I know everything there is to know about living with this condition. Sunday night’s group session was a great reminder that the learning never ends and there is always something new to try.

I came away with a page full of notes, links, suggestions and resources about different aspects of AS. New exercise videos and apps to help with strength training, Facebook groups I’d like to join, information on disability support I wasn’t previously aware of--all really useful stuff.

I like being with people who understand

The other thing I noticed about the hour-long chat was how comfortable it felt to be in the presence of people who totally understood the unique challenges of living with AS.
I always focus on how well I’m doing and how far I’ve come in managing the physical symptoms and mental load of chronic illness. Interacting with the group reminded me that in spite of all that, I’m still carrying an extra load that most other people don’t understand.

Staying on top of AS is a dance I perform daily. From the moment I get up until the time my head hits the pillow I’m striving to make good choices and keep inflammation in check. The thought that a flare could return is never far from my mind, and I do still deal with pain at times.

I was able to be honest

During the group session I was able to set all that aside and just talk with others about how hard and crappy it is to have AS. As a group we listened to one another, added words of support, and reminded each other “we get it.”

For me, it was also a welcome change to focus on my own needs rather than putting those aside to care for my family or my clients as I so often do in the various support roles I take on in life.

I felt seen

I thrive on helping other people but I was reminded recently of that saying “you can’t pour from an empty cup.” Throughout the course of the call there were some sad moments shared and there were some great laughs as well. Overall it was just a comfortable space in which I think we all felt valued and seen.

Our group leader did an excellent job of moderating the conversation, allowing everyone space to speak up and gently moving on when time was short. Annie has facilitated this group for a long time and her skills in creating a supportive environment were very apparent.

I came away from the group feeling lighter, and wondering again why it had taken me so long to put in practice something I’ve recommended to others so many times. I’ll be making my appearance on a regular basis from now on.

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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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