If you’re ever short on unsolicited medical advice, try starting with the word “inflammation.” The internet will tell you your body’s innate response to injury or illness is well within your control – something you can bend to your will with a strategic sleep schedule, a bit of meditation, and whatever diet is most readily available at Erewhon. In my case, inflammation is less of an innocuous process and more of a tangible pseudotumor, actively pushing my eye out of my head and rendering me completely blind in one eye. To help, over the past three years I’ve become a frequent flier at Mayo Clinic and endured infusions, surgeries, spinal taps, radiation therapy, and corticosteroids. But that doesn’t stop people from suggesting the real problem is me.
In a way, they’re right. My body is undoubtedly attacking a problem that is not there, and the truth is, no one really knows how to stop it. But while anti-inflammatory diets, consistent sleep, and low stress can help mitigate flare-ups, I promise my persistent blindness has nothing to do with my mindset.
My Uber driver notices my eye and tells me the problem might be psychosomatic. “Have you tried hypnotherapy?” The rest of the ride home is silent. On social media, TikTok commenters urge me to apply castor oil every night (because clearly whatever I’m doing isn’t working). At a local restaurant, a woman overhears my story and tells me about all the foods she’s cutting out to reduce inflammation. I listen politely, my eyelid still scarred from the latest biopsy. She returns to her seat and we both bite into our respective burgers.
Self-help mentors like Jay Shetty also come to mind. Occasionally recommended to me for his life coaching, Shetty is a former monk whose journey to enlightenment was recently called into question. One of his podcast episodes discusses the global celery juice movement, and how it may help people with chronic illness. Another teaches people how to completely heal their body and mind using the right food and positive thinking. Other New Age spiritual influencers, including one with 800,000 followers, claim to have even healed their own kidney infections through the power of the mind.
To be fair, most of the advice I’ve heard is well-intentioned. It’s just that when I’ve already seen the very best doctors and been to five different hospitals without a definitive diagnosis, this self-help narrative places the burden of an incredibly complex chronic illness solely on my shoulders. Without a diagnosis, it already feels like there’s always something more I could (should?) be doing. And then if I do have a flare-up, the inevitable guilt is hard to ignore. Maybe I should’ve done something differently. Maybe it is all my fault.
Most people say healing will be easier if I just stay positive. Other internet trolls see my videos and tell me I shouldn’t be this happy. “[I’d] almost rather die than remove my eye,” one commenter writes in a video mentioning the potential removal of my eye. In these moments I realize the call for self-improvement is mostly just a projection of a fear I no longer feel.
Some conditions are just un-self-helpable – as in the symptoms are as debilitating, the pain as excruciating, the treatment as elusive as people in the chronic illness community have been saying – and the rest of the world may have to reckon with the fact that the same exact thing could happen to them. According to the CDC, roughly one in four (or 27 percent) of adults in the US have some type of disability, and six in 10 Americans live with at least one chronic illness. Instead of encouraging people to seek the answers within themselves, we need affordable medication, more research for underfunded and neglected conditions, and better systemic support.
At this point, I’m not sure if anything will make me less blind, but at least I know that my flare-ups aren’t due to a lack of self-help. And if we’re being totally honest here, I’ve never really liked the taste of celery juice anyway.
