Two things happened in September. I joined Instagram, and I was tentatively diagnosed with chronic Lyme disease. After a brief hesitation, I quickly embraced Instagram: so much design! Keeping up with my friends’ cats! Nothing in my feed I didn’t want to see! And it being my only social media outlet (I had ditched facebook after years of the old on-again-off-again), I was now faced with a new dilemma: in the midst of the carefully cultivated snapshots of my travels and recipes for green shit in jars, would I out myself to the world as chronically ill?
There are many things to be said for both sharing and withholding personal information in the digital age. I am, by nature, a very open person, and see no shame in sharing personal details with curious strangers. In fact, being one of these very curious strangers myself, one of the first things I did once I learned about the possible culprit behind my exhausting laundry list of health issues was hit up the search and explore page on Instagram and type in “#Lyme”.
Holy Moses. Firstly, there are so many people out there suffering on a daily basis, and this being Instagram and all, they are all SO YOUNG. Sporting ombre-dyed hair, holding impossibly small dogs in bed, reading John Green novels–can all these darlings really be confined to bed, bodies riddled with relentless pain, antibiotics pumped in through built-in portable IV lines? Alas, this is the beast that is chronic Lyme disease. The first night I spent forty five minutes looking at pictures marked #Lyme/#Lymedisease/#Lymedontkillmyvibe and then had trouble getting to sleep. All night I dreamt of trying to outrun tsunami waves breaking on my city’s waterfront.
One thing that really stood out to me (apart, of course, from the terrific suffering so many people continue to endure and their strength, grace, and humor regarding said suffering) is the phenomenon to refer to oneself as a “warrior” against disease, usually amidst an emoji-laden profile. I know I should probably go to hell for this, but I used to think it was hokey. Even the google dictionary gives a disclaimer of the term’s antiquity before providing the definition: “a brave or experienced soldier or fighter.” Reading this definition today, I no longer think it’s tacky for a sick person to refer to themselves in this way. They should be able to call themselves whatever they damn well please. Former me apologizes.
I’d probably be better off not losing myself in Instagram before bedtime. I know that. Just like I know I shouldn’t be drinking coffee when my adrenal glands don’t work, shouldn’t compulsively pick at my skin and scalp, shouldn’t keep putting off my meditation practice. But looking at those pictures, while heartbreaking and frightening (less the ombre hair and small dogs and more the infected biceps and swollen appendages), was also important. It was important because it’s a massively big way for young people going through things like chronic illness to make connections and share pain and hope. It’s a community: people follow each others’ journeys, send supportive messages, share information about herbs and doctors and methods to lessen symptoms, even mail one another care packages. It’s a damned wonderful thing, and it feels nice knowing that community exists for me if and when I find myself needing that support.
As my doctor and I continue to work on securing a definite diagnosis (a monumentally complicated task when it involves Lyme disease), I find myself an unwilling member of the chronic illness club. I am now faced with the question: How will I publicly define myself on this journey to reclaim my health? Will I too join the lime green ribbon-sporting warriors, or will I keep my reality hidden under selfies, sunsets, and soy lattes? Are they mutually exclusive? And most importantly, how will I keep my illness from defining me?