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.
Does reading AxSpA patient stories help you in your journey?