Social Media & Chronic Illness/ Disability
When you have a rare disease or chronic illness as debilitating as Friedreich’s Ataxia, you probably feel conflicted about social media platforms. Some days, I cannot stand social media. However, it’s an unavoidable part of our modern lives, and does have clear benefits in my own life. There are definite pros and cons for anyone active on social media.
Important Note: Social Media has had an insurmountable impact on our country and world; this is just how it affects me personally.
Social media can make you feel even further from being able to live a “normal” life.
When you have a rare disease, like FA, or a different chronic illness, it is so easy to feel like you’re not reaching your potential or living life to the fullest. The comparison game is so strong and real on social media. It’s editorial, a magazine; people love to showcase their perfect lives, perfect friend groups, perfect job, perfect partners, etc, etc. It’s deceiving; no one lives a flawless life.
My Mantra: Comparison is the thief of joy. When you focus on your own joys and practice gratitude your life will improve. (Tinx 100% inspired this.)
Social media is literally addicting; it wastes time and distracts you from life. I’m a user and advocate of Time Limits on social apps. Although I’m guilty of hitting ignore a few too many times, it’s a great reminder of just how much time you’re wasting. (Sometimes you just need that mindless, endless scroll, though. Been there.)
Social Media can inspire. I can’t explain how much TikTok has inspired me. I’ve made countless recipes, bought my favorite clothing items, gained knowledge about political matters, became friends with fellow Swifties, learned how to clean white tennis shoes, added luxury hotels to my bucket list, taught my dog new tricks, and that’s just scratching the surface.
In addition, it’s a great avenue for promoting Kelly & FA.
Social Media can make you realize you’re not alone. There are so many others experiencing what you’re experiencing. Chances are you don’t have many friends in close proximity who have the same diagnosis. I can count the number of other FA’ers in the entire state of Ohio on one hand, and most are 10+ years younger than me.
Illness can be isolating, but with social media, it doesn’t have to be. I’ve made countless TikTok and Instagram friends, friends with FA in other countries with rare disease, with MS, other types of Ataxia, or other disabilities.
I use hashtags, like #curefa, #raredisease #columbus #babewithamobilityaid, etc. to connect with others.
Social Media makes it easy to advocate. Social media platforms make it easy to reach people. My TikTok friend, Tiffany, has an incredible Anti-Ableism series.
Will there ever be a day when I don’t have a love/hate relationship with social media? I’m doubtful. There are so many pros and cons, and I didn’t even touch on so many topics. This is just how social media affects me and how I can effectively use it.
How do you feel about social media? Do you agree or disagree with any points?
x Kelly
