There are many great things about social media. It connects people who would never otherwise meet or talk, creates shared experiences, and can be used as a tool for support and empathy. On social media, the great “we” can be parsed into parts; suddenly the faceless many with ankylosing spondylitis (AS) become an engine. Within that community are more communities — mothers and yogis with AS and those newly diagnosed with it. There’s something so beautiful about that.
Scrolling through the hashtags I follow, such as #AnkylosingSpondylitis and #ASWarrior, I see countless people sharing their stories, from chronic pain and the vulnerability around it to nutrition for AS and even remission celebration.
Sometimes people share low-impact yoga poses used to reduce pain while others post videos about their experiences with doctors or friends. All of that makes me feel less alone and reminds me that the little things I deal with day to day aren’t just my weird little things existing in a black hole of self, but rather are things we all do and feel and experience. I’m grateful to see myself reflected back at me.
But sometimes the darkness of social media engulfs me. I see such painful posts about loss of marriage due to loss of intimacy, loss of mobility, and sometimes even treatment gone wrong. As I wrote in my post exploring the use of online support groups for AS management, one must carefully use the internet to find support.
That is easy for me to say — I live in a major city and have access to support resources in person, which is a privilege I want to point out. However, scrolling endlessly on social media — even when connecting with other AS or chronic illness patients — can limit one’s world as much as it can expand it.
People can fall into the obsessive need to pass the time with social media and the subconscious act of comparing themselves to others. Limit time on the platform. Make space to experience life in reality: read a book, take a walk, draw, or simply call a friend. Be aware of any narratives your mind begins to play out: I should be in remission like this person. I should be able to do yoga like this person. I should take this medicine or that medicine, too.
Remember that your AS experience is unique to you, including your body, your treatment plan, your lifestyle. There’s no rulebook saying you must beef up at the gym or that Humira (adalimumab) should cure you. Maybe you don’t actually like the gym but you love to swim, and maybe another treatment works better for you.
Look for inspirational, aspirational, and helpful posts, but know that your version of doing your best is going to look different than someone else’s.
Use social media to learn, connect, and find validation and representation, but try not to use it to numb yourself. When I fell into spending hours scrolling, I lost hours that could have been spent doing other meaningful things that empower me.
Ask yourself these questions, just as I did:
- What about social media empowers me?
- What about social media inspires or teaches me?
- What about social media negatively affects me?
- How much time should I use social media before it begins to feel like it’s all there is? Can I modify my behavior online to suit my needs better?
- How can I take what inspires me on social media and do something with it in real life?
Learn more about me and my ankylosing spondylitis journey at my Instagram.
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 Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.