I. The Word “Inflammation” Is Abused on the Internet
If you search for “inflammation” online, you will be inundated with unsolicited medical advice. The internet tells you that your body’s innate response to injury or disease is entirely within your control—all you need to do is adjust your sleep schedule, practice a little meditation, and head to Erewhon to pick up whatever diet happens to be trending.
But for me, inflammation is not a harmless physiological process. It is a tangible, tumor-like mass that is pushing my eyeball out of its socket, leaving me completely blind in one eye. To combat this, I have spent the last three years as a regular at the Mayo Clinic, undergoing IV infusions, surgeries, lumbar punctures, radiation therapy, and corticosteroid treatments.
Yet, none of this has stopped people from telling me that the real problem lies with me.
In a sense, they aren’t wrong. My body is indeed attacking a problem that doesn’t exist—and the truth is, no one knows how to make it stop. Anti-inflammatory diets, regular sleep, low-stress living—these things can certainly help alleviate flare-ups, but I assure you: my ongoing blindness has absolutely nothing to do with my mindset.
II. That Ubiquitous “Advice”
My Uber driver noticed my eyes and suggested that the problem might be psychosomatic. “Have you tried hypnotherapy?” The rest of the ride passed in silence.
On social media, commenters on TikTok urge me to apply castor oil every night (implying, of course, that everything I’m currently doing is “useless”). At a local restaurant, a woman overheard my story and began listing all the foods she had cut out of her diet to fight inflammation. I listened politely, the scar from my most recent eyelid biopsy still fresh on my face. She returned to her seat, and we each took a bite of our burgers.
Self-help gurus like Jay Shetty also come to mind. Occasionally, someone will recommend that I seek out his “life coaching.” This former monk’s path to “enlightenment” has previously come under scrutiny. One of his podcast episodes discusses the global celery juice movement and how it supposedly helps people with chronic illnesses. Another teaches listeners how to “completely heal” their mind and body using the right foods and positive thinking. Among the new wave of spiritual influencers, there is one with a following of over a million who claims to have cured a kidney infection solely through the power of intention.
To be fair, most of the advice I’ve received has been well-intentioned. Yet, when I have already consulted the best doctors, visited five different hospitals, and still lack a definitive diagnosis, this “self-help” narrative places the entire burden of an incredibly complex chronic illness squarely—and solely—upon my shoulders. Without a diagnosis, I am left with the persistent feeling that there is always something more I could (or should?) be doing. And whenever a flare-up strikes, the inevitable guilt is hard to ignore: Maybe I should have done something differently. Maybe this is all my fault.
III. The Paradox of “Staying Positive”
Most people would argue that if I simply “stay positive,” my recovery will be easier. Conversely, some internet trolls—after watching my videos—tell me that I shouldn’t be so cheerful. “I’d rather die than have my eyeball removed,” one commenter wrote beneath a video in which I discussed the possibility of eye enucleation.
In moments like these, I realize that these calls for self-improvement are, for the most part, merely a projection of a fear that I myself no longer harbor.
Some conditions simply cannot be “self-helped”—the symptoms are too debilitating, the pain too excruciating, and the cure too elusive. As members of the chronic illness community have long maintained, the outside world may eventually have to confront the fact that the very same thing could happen to them. According to CDC data, approximately one-quarter (27%) of U.S. adults live with some form of disability, and six out of ten Americans suffer from at least one chronic disease.
Rather than encouraging people to look inward for answers, what we truly need is affordable medication, increased research funding for under-resourced and neglected diseases, and better systemic support.
At this stage, I am no longer certain if anything can restore my vision. But at least I know this much: my flare-ups are not the result of a failure to “self-help.” And truth be told, I never really liked the taste of celery juice anyway.
