Finding strength and community through connection with others

Since I was diagnosed with ankylosing spondylitis (AS) at the age of 26, one of the main issues I’ve faced is loneliness. Missing out on social engagements when I’m in a flare, giving up hobbies that I love, and being isolated while in the throes of chronic pain have often made me feel like I’m alone in my struggle.

According to the American College of Rheumatology, millions of people are living with rheumatic diseases. But how does one get connected to other people with diseases like ours?

I’d heard that the Arthritis Foundation hosts different forms of virtual support groups for people with arthritis. I’d even signed up for some of their virtual events, but never attended. I realized that I was more interested in opportunities to connect with people in person than chatting with strangers online.

Last fall, I decided to try a different method of getting involved. Using the Arthritis Foundation website, I filled out a volunteer form, and within a few weeks, I was connected to their director of development.

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Getting involved in my local community

The director shared resources on managing arthritis and ways to get involved as a volunteer. She recommended that I join the local New York City committee that helps run the Walk to Cure Arthritis, an annual walk that raises money to help with scientific advancements related to arthritis. I was excited about the prospect of meeting other volunteers interested in supporting those with rheumatic diseases like AS. I also loved that the main sponsor of the New York walk was the Hospital for Special Surgery, the same hospital where my rheumatologist works. It felt like a great way to tap into my local arthritis community.

A few weeks later, I met the committee at a restaurant in Midtown Manhattan. To my surprise, most of the other volunteers were other young women who also had rheumatic diseases.

While each of us had a different journey with our illness, many of us had faced similar challenges, including uncomfortable side effects of medications, dismissive doctors, and even just trying to explain the wax and wane of our symptoms to friends, family, and our significant others. I even learned that a fellow volunteer lived up the street, also worked in education, had tried the same biologics, and had been treated by the same doctor as me!

Since that first meeting, our committee has met several times in person and online. Our sessions consist of logistical discussions to prepare for the walk, but beyond that, they’ve been a place to share frustrations, wins, and tips, and vent about what it’s like to be a young person living with arthritis.

In addition to the connections I’ve made through this committee, I’ve also found that volunteering makes me feel like I’m taking charge of my disease in some ways. In doing something active to help other people with arthritis, I’m not letting the disease keep me lonely. Instead, I’m using it to help connect me to others.

If you’re living with a rheumatic disease like AS, I encourage you to get involved in your local Arthritis Foundation chapter. Check out their resources, participate in your local walk, and even volunteer for one of their events — and who knows, you might even meet a neighbor who is dealing with a similar struggle.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.