The lack of “legitimate” treatment options often makes me feel like my illness itself is illegitimate.
For whatever reason, I always associated serious illnesses with serious treatments: specific medications, targeted procedures, or, at worse, if none of those worked, death. My diagnosis of Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia came with none of these. That this disease wasn’t life-threatening didn’t diminish the fact that I felt like it was life-ending.
As if the actual symptoms weren’t enough, I added on to the immense shame I felt about my lack of energy and productivity by feeling increasingly insecure about all the weird shit I was doing to try and help myself. When the medical establishment leaves you with few options, you start to look elsewhere, be it a deep-dive into the conspiracy-laden areas of the internet, or the cousin’s neighbor’s friend who had something similar and found relief from this one weird trick doctors don’t want you to know about.
The ever-growing list of what is technically known as “weird shit” that I’ve tried in the name of my health includes but is not limited to: acupuncture, yoga, reiki, gluten-free diets, lectin-free diets, no alcohol, energy healing, essential oils, frequency-based therapies, coffee enemas, ozone chambers, herbal supplements, homeopathic remedies, neurofeedback, detox foot baths, IVs, antibiotics, antivirals, antidepressants, and the like. The absurd thing is that many of these interventions have helped in some way. Taking Neem, an Ayurvedic herb, helped clear my cystic acne and improve my digestion. Neurofeedback improves my brain function and sleep quality. Jumping in front of a laser beam when I had a cold knocked out my sinusitis. I am skeptical of everything and yet somehow still open to trying everything.
But all these fringe treatments leave me feeling like I’m on the fringe. For many years, I thought that if I had a real illness, something truly serious, then I would have real treatments. Official medical recommendations from institutions like the NHS in the UK recommend CBT (cognitive behavioral therapy) and GET (graded exercise therapy) as the first line of treatment for chronic fatigue syndrome. And while I love my CBT sessions and I exercise as I am able, I couldn’t help but think that these treatments sounded, well, pathetic. As if it wasn’t enough to have people around me and in the medical community discounting my symptoms, I decided to jump on the bandwagon and dismiss myself. I just needed to get myself together, because if this was real, then I’d have been diagnosed with something with a scary name, and I’d have a complex cocktail of prescriptions to treat me, if not cure me altogether.
In lieu of one central treatment strategy or prescription cure-all, I take an inordinate amount of supplements. The extra room in my apartment is full of tote bags containing all kinds of herbs, potions, and tonics. And many of these have legitimately helped — if only I knew which ones. I sort these supplements into pill containers generally reserved for the elderly, and use twice as many because that’s how much I take each day.
I remember one evening after a particularly rough day, coming home to my kitchen table, which was littered with bottles. As I tried to sort through the mess and make sense of everything, for some reason I started thinking about my dating experiences. And I distinctly remember asking myself, who will ever love me enough to put up with all of this?
In an attempt to maintain at least the facade of normalcy, I’ve always tried to hide these supplements whenever people come over. After all, that’s what spare rooms and closets are for, right? And then people leave, and I bring everything out again. I understand the healing properties of what I take, and while there is certainly a rationale for each product, there’s a tendency in the alternative and functional medicine communities to throw a new product at every new symptom. So over the years, I’ve developed this collection, and I know some of these things are helpful but I take so much it’s hard to know exactly which ones. But I keep taking everything, in a futile effort to control a situation that no one really understands.
I haven’t come to any sort of resolution to this mess, this constant self-experimentation and hope for legitimacy for an illness so often relegated to the fringes of the medical community. But I understand better that my experience and my symptoms are valid in and of themselves: the lack of mainstream treatment options does not diminish the severity of this chronic illness.