A person with a smartphone as their head. The screen of the smartphone has a hypnotic spiral.

Support Group Doomscrolling

When I was first diagnosis with nr-AxSpA, I was relieved. I finally knew what was “wrong” with me. There was an actual diagnosis to learn about. I had a ton of questions and spent a lot of time online trying to educate myself. My searches lead to me to WebMD, Mayo Clinic, Arthritis.org, Spondylitis.org. I read every article I could find on the who, what, and why of AxSpA. The main question I was trying to find an answer to was “What am I in for?”

From what I read, the consensus was that people with AxSpA were able to live relatively normal lives if it is caught early and treated. This made me feel cautiously optimistic because I was diagnosed early (within one year of having symptoms) and I was managing OK with just physical therapy.

I wanted to speak with people living with AxSpA

While these websites were informative, I wanted to hear from actual patients living with this disease. I found a few support groups and started scrolling through the posts. What I found shocked me. I read about people being in intense pain every day and not being able to sleep. There were posts about being out of treatment options, trying to get into a pain clinic or applying for disability. The information I was gathering was painting a bleak future for me – I would never have another pain free day, the treatments I try won’t work, I’ll have to quit my job, and I’ll never feel “normal” again.

These did not seem like people “living relatively normal lives”. My question of “What am I in for?” was answered and I didn’t like the answer. I started to get extremely anxious and I started worrying all the time. Every time my pain was a little worse, I thought to myself “This is it, the beginning of the end for me.”

I couldn't stop scrolling

Despite my anxiety, I couldn’t stop scrolling through the support group website. I would log on every day and consume post after post. I was actively participating in a new phenomenon called “Doomscrolling.” While not an official word yet by Merriam-Webster, it describes the act of scrolling through bad news continually even though the news is upsetting or depressing. Because of my doomscrolling, I was now living in a made-up future that I’d created for myself based on others’ stories and I was starting to feel the effects in my body. My pain started to increase, and I was exhausted. I found myself wishing I’d never found the support group because I definitely did not feel supported.

I realized I had to take a break from the support groups and try to think with my rational brain and not my emotional brain. I told myself that on the support group site, I was only seeing a snapshot of people’s journey. I didn’t know their whole story – how long did it take for them to get diagnosed, what kind of treatments had they tried, what kind of lifestyle did they live. The biggest conclusion I came to was that everyone is different. Even if I had one person’s whole story, it would be impossible to make a comparison to myself and conclude that my journey will be exactly the same. I was still very early in my journey with AxSpA and I wasn’t even on any kind of treatment yet. It’s possible all my worst-case scenarios could come true, but I can’t predict the future.

We're all just trying to understand

At my next rheumatology appointment, I was prescribed a TNF inhibitor, and I have been doing really well on it. Being on a treatment that works changed my mood immensely. Since then, I have been back on the support group website and I’ve found it more supportive. Instead of seeing a pit of doom, I see a community of people trying to find others who understand what they are going through. I see advice being exchanged – what’s the best way to sleep, what kinds of dietary changes have people tried, treatments, etc. Now instead of Doomscrolling, I drop a line of support or just say hello.

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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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