ME and Me
By Vivian Auren
When I was diagnosed with ME, I was relieved that they finally found something. It all started during the spring semester of my first year in college. I felt so fatigued and lethargic I could barely get out of bed, let alone stay the entirety of class. I didn’t know what was happening, or that it was a flare-up. I didn’t know at the time that my bacterial tonsillitis and frequent viral infections would later be the trigger to what is now chronic fatigue syndrome, or ME. Fast forward to early July, and I am vomiting everything I put down if there’s the smallest trigger. I put all of my symptoms into an app called Ada, which tracks and analyzes your symptoms into possible conditions. CFS came up as a 70% chance once, but I brushed it off, assuming “only old white women have that right??” Wrong- CFS/ME affects people of all genders, ages, and races. I had been fed the idea that disabled and sick looked that way, so I internalized it.
Fighting to be taken seriously and for a diagnosis was actually not too difficult, but I’m one of the lucky ones. I had an incredible primary care physician.
Then came what I’ll call “the month of testing”. I was referred to a rheumatologist, ENT doctor, neurologist, gastroenterologist, etc. My MRI scans came back normal, but the neurologist said he had concerns about my brain fog. I almost completely failed the memory test. I had consistent sore throats (ENT) and vomiting (GI). When my primary care doctor left, she referred me to another primary care physician who the minute I detailed all the symptoms and almost burst into tears, completely believed me and diagnosed me. I then definitely cried after, due to sheer panic of hearing horror stories of doctors saying “well, isn’t this just depression?” Or “well, maybe its your mental illness acting up. Go for a walk!” I’ve heard tales of women and femmes going in only to be told they’re on their period and are PMS’ing.
At first I didn’t claim being disabled. There seems to be a lot of fuss on platforms like Instagram on whether or not you’re “allowed” to claim certain things as a disability, if you’re not “paralyzed enough” or worst of all, labeled as a “munchie” (someone who is faking for benefits). But for me, it was a few days post diagnosis. I had thrown up in the bathroom at a concert, for the 5th time that week, and just thought “yeah! You know what, I can claim this.”
Being an artist, queer, and trans while disabled is not easy. Navigating my disability with relationships has been a lot of conversations about emotional and physical labor and how that can affect my ability to do almost anything, which is another thing I want to eventually write about (disability in relationships). I currently feel very valued in my non-binary, disabled, and queer experience being validated, but let’s not forget that it’s not that way for so many people. Due to the diagnosis being a process of elimination, throughout that process, many people with ME doubt that they had any symptoms at all and write it off as stress, or have someone else write it off for them.
I’m also pushing and hopefully fighting for more studies being done about what causes inflammation that can enact ME, and maybe one day finding a cure. I would like to one day volunteer my time and samples to fuel further research, and I hope other willing people with ME do too.
But for now, I know that I have an incredible care team behind me, and I couldn’t be more thankful.
My name is Vivian Auren, and I am a non-binary and disabled queer from Washington, DC. I focus most of my efforts on social media as a tool for expression in a world that can be so underrepresented of my identities. It’s really important to me to connect with other queer individuals to heal and feel related to. I also run March For Our Lives MICA, and am a freelance model!