There’s no question that social media has had a strong impact on the chronic illness community. Finding an online group of people who share the same experiences as you has been pretty easy for some time now.
Over the past couple of years, we’ve seen the social media space evolve into the nerve center of a movement for more understanding and support for chronic illnesses like MS.
Unfortunately, social media has its downsides. Making sure the good outweighs the bad is an important part of managing your experience online — especially when it comes to sharing details or consuming content about something so personal as your health.
The good news is, you don’t have to completely unplug. There are some simple things you can do to make the most of your social media experience if you have MS
Here are some of the benefits and setbacks of social media, as well as my tips to have a positive experience.
Seeing authentic versions of others and being able to connect with people living with the same diagnosis lets you know you’re not alone.
Representation can help boost your confidence and remind you that a full life is possible with MS. Conversely, when we see others struggling, our own feelings of grief and frustration are normalized and justified.
Sharing medication and symptom experiences with other people can lead to new discoveries. Learning about what works for someone else may encourage you to investigate new treatments or lifestyle modifications.
Connecting with others who “get it” can help you process what you’re going through, and allow you to feel seen in a powerful way.
Putting our stories out there helps break down disability stereotypes. Social media levels the playing field so that stories about what it’s like to live with MS are told by people who actually have MS.
Everyone’s MS is different. Comparing your story to others can be damaging. On social media, it’s easy to forget that you’re only seeing a highlight reel of somebody’s life. You may assume they’re doing better than you are. Instead of feeling inspired, you might feel cheated.
It can also be harmful to compare yourself to someone in worse condition than you are. Such thinking can negatively contribute to internalized ableism.
Social media can help keep you up to date about MS-related products and research. Spoiler alert: not everything you read on the internet is true. Claims of cures and exotic treatments are everywhere. Plenty of people are willing to make a quick buck off of someone else’s attempt to regain their health if traditional medication fails.
When you’re diagnosed with an illness like MS, it’s common for well-meaning friends, family, and even strangers to offer unsolicited advice on how to manage your disease. Usually, this kind of counsel oversimplifies a complex problem — your problem.
The advice may be inaccurate, and it can make you feel like you’re being judged for your health condition. Telling someone with a serious illness that “everything happens for a reason” or to “just think positively” and “not let MS define you” can do more damage than good.
Reading about someone else’s pain that’s so close to your own can be triggering. If you’re vulnerable to this, consider the kinds of accounts you follow. Whether you have MS or not, if you’re following an account that doesn’t make you feel good, unfollow it.
Don’t engage or try to change the point of view of a stranger on the internet. One of the best things about social media is that it gives everyone an opportunity to tell their personal stories. Not all content is meant for everyone. Which brings me to my next point.
Within the chronic illness community, some accounts are criticized for making life with a disability look a little too easy. Others get called out for appearing too negative.
Recognize that everyone has the right to tell their story the way they experience it. If you disagree with content, don’t follow, but avoid publicly bashing anyone for sharing their reality. We need to support each other.
Protect yourself by only making public what you feel comfortable sharing. You don’t owe anyone your good days or bad days. Set boundaries and limits. Late night screen time can disrupt sleep. When you have MS, you need those restorative Zzz’s.
Champion others within the community. Give a boost and a like when needed, and avoid pushing diet, treatment, or lifestyle advice. Remember, we’re all on our own path.
Social media should be informative, connecting, and fun. Posting about your health and following the health journeys of others can be incredibly healing.
It can also be taxing to think about MS all the time. Recognize when it’s time to take a break and maybe check out some cat memes for a while.
It’s OK to unplug and look for the balance between screen time and engaging with friends and family offline. The internet will still be there when you’re feeling recharged!
Ardra Shephard is the influential Canadian blogger behind the award-winning blog Tripping On Air — the irreverent insider scoop about her life with multiple sclerosis. Ardra is a script consultant for AMI’s television series about dating and disability, “There’s Something You Should Know,” and has been featured on Sickboy Podcast. Ardra has contributed to msconnection.org, The Mighty, xojane, Yahoo Lifestyle, and others. In 2019, she was the keynote speaker at the MS Foundation of the Cayman Islands. Follow her on Instagram, Facebook, or hashtag #babeswithmobilityaids to be inspired by people working to change perceptions of what it looks like to live with a disability.