Social media is giving chronic illness a bad rep and it’s devastating.

I hate the way social media has been portraying chronic illness lately. With Poppy Coburns recent news article gaining popularity, I’ve seen video after video claiming people have stopped trusting those who say they have specific conditions (EDS, POTS, fibro, etc). Some even going as far as stating anyone saying they have those conditions are simply lying and just looking for attention.

I (20F) have hEDS. I’m a cancer survivor whose chemo “activated” my EDS symptoms very early on in life. My life has been full of pain and suffering. I was diagnosed with leukemia at 2 and then from there everything worsened. I’ve had lung problems, heart problems, neuro problems. You name it, for some reason my body decided to have it. I’ve had feeding tube, taken life altering medication, had brain surgery, and more. Despite what has happened to me over my lifetime I am still an entirely normal person. I have a job and I’m in college studying CJ, I work hard every day to meet the standards of healthy people even when I feel my worst.

Thats where my rant comes in- I hate the reputation chronic illness is getting online. Yes, there are probably some awful people out there who do fake conditions (munchausens). I hate it that there are people out there who do that, but that shouldn’t be the reason every single person with these conditions is deemed a “faker”. My conditions changed my entire life from the moment I was born, it’s given me some of the hardest challenges I’ve ever faced and will continue to face til I die. My condition isn’t fun, it’s not glamorous, it’s not an excuse to lay around. It’s painful and I will have to rely on doctors the rest of my life, but hopefully my story can help change the narrative of chronic illness going on online, and your story can too. Let’s please change the reputation of chronic illness, for those who are truly suffering