What follows is another interlude that has nothing to do with sewing, nor does it touch much on epilepsy. Bear with me if you feel equipped to read about issues pertaining to eating disorders and are game for a meandering reflection with no satisfying conclusion; stop reading if any part of you hesitates or if you’d rather do something else with your time.
The parade of inspirational—and not-so-inspirational—posts and pictures still lingering in my Instagram feed tells me that it was recently Eating Disorders Awareness Week. More often than not, I have no idea that it’s happening at all. If I do, I usually let it pass without making a deal of it. This year, however, I’m inspired to acknowledge it in my own messy way (and late because that’s how I roll).
I have mixed feelings about this observance. On the one hand, I in theory want to advocate for the prevention and treatment of disordered eating and eating disorders in all their many, and varied, manifestations. If your casual social-media user stumbles upon an awareness-raising blurb or responsibly presented infographic and takes meaningful action as a result of what they learned, wonderful! On the other, well-intentioned calls for personal narratives invite the unmoderated and unfiltered sharing of images and detailed accounts that have the potential to harm an already vulnerable population. My hunch is that if you’re seeking out eating-disorder content on TikTok, there’s a good chance that your motivations are iffy.
Let me be clear: I firmly believe that censorship, and self-censorship, is wrong—in most circumstances, anyway. I believe that lived experience can be an important learning tool and that sharing can contribute to healing. That said, this is a sensitive area, social media is tricky, and malnourished brains don’t always make the best decisions as to what’s appropriate to post and what would be better left processed and handled with a medical team or in a journal. They don’t always receive and process information as one might expect, either. How, then, do you educate and engage without publishing a how-to manual or otherwise triggering the initiation, perpetuation, worsening, or relapse of illness? How do you avoid inadvertently glamorizing a cluster of horrific, messy, and harmful disorders? How do you navigate the fact that wholly positive stories of full recovery can also be damaging? Put differently, awareness, yes, but to what end and with what impact? These are questions I grapple with myself, and not just one week of the year.
I’m very open in this blog (arguably too open) about many of my health challenges. I drone on and on about epilepsy and about OCD, and I’m loud and proud(?) about being a wheelchair user. I take delight in complaining about this inaccessible world we inhabit, and I’m quick to boast about my rehabilitation triumphs. I’m quieter, however—albeit not entirely silent—about the scourge I’ve dealt with the longest and that has been most devastating to my physical and mental health; the one so intertwined with the others as to be practically inextricable from them. It didn’t come first, and there have been periods in which it’s lain dormant, yet it’s been around for twenty-five years, ready to rear its ugly head when my guards are down due to whatever other medical stuff is going on. I live with it. I live despite it.
Part of my hesitancy to write more than superficially about how anorexia affects me is this concern regarding the blurry line between education and unintended harm. Part of it is a stew of shame, embarrassment, guilt, and regret that cause me to avoid rather than try to explain and bring awareness in a constructive manner. Part of it is my resistance to making my decades-long eating disorder more of my identity than it needs to be—or giving it more space than it’s already taken. Part of it is denial: I like to think, and tell myself, that I’ve left anorexia squarely in the past, and it would be disingenuous to explore it in a public forum without admitting that I continue to make compromises in its name. In other words, it’s complicated, just as my particular course of illness has been.
This isn’t the time or place to sort all that out or rehash that history or psychoanalyze myself. I’m still on the fence about how much makes sense and is responsible to share. For now, for the purposes of raising awareness or whatever, I’ll just say that in interplay with epilepsy and OCD, anorexia has irreversibly damaged me. I could do the silver-linings thing and write that it’s taught me valuable lessons, but these are lessons I wish I’d never had to learn. I could soften it, make it more palatable for my readership by injecting some humour, but it’s too heavy to lighten, and it isn’t funny.
Is it realistic to think that increased awareness will lead to better funding for research and treatment, both of which are sorely lacking for eating disorders? I’ve been at this well over half my existence, and I haven’t seen much movement on that front. My anorexia resulted from the perfect storm of genetics and circumstance, and while I’m not sure it could have been prevented entirely, I do suspect that had I had access to evidence-based care that took into account the complexity of my medical situation, it might have been quashed earlier. No use speculating; can’t change the past.
Regardless, I’ve clawed my way back from the brink. I’m certainly grateful for that. For the rest of my life, though, I’ll deal with the aftermath and debris of the periodic tidal waves of illness that have torn me down after periods of relative calm. Still, I’ve held my own for years now. I am, as always, a stubborn beast. I drink my supplements and ignore my worst instincts. I’m cautiously optimistic that one day, someday, I’ll evict this evil roommate. For the time being, we begrudgingly coexist, each doing our best to ignore the other. God knows, however, that I’m all too aware of its presence. I take comfort at the thought that I probably piss it off as much as it does me.
So is mine a success story? I’d hazard a “yes” since I’m here to tell it. In many ways, I’m thriving. I eat to live, and I’m truly, truly living. I eat to think, and I’m always (over)thinking. I eat to travel, and I’m travelling more and more. I eat to sew, I eat to write, I eat to volunteer, I eat so that I can be a full participant in relationships and activities that make me a better person. I eat enough to fuel my body, and I follow my dietitian’s guidance, and I go to therapy, and I see my doctor on a regular basis, and all that has saved me. But for reasons that should be obvious, it’s also a cautionary tale, and conveying the nuance in it is a daunting task that I’m not currently willing to undertake. I’m choosing to use that energy to increase my awareness of what I don’t know—what it’s like to make choices based on preference rather than nutrition, for example. What it’s like to have preferences in the first place; it’s been so long since I’ve had certain items that I have no real idea whether or not I like them. Being aware of what it feels like to go out for dinner with friends and not have the very idea induce a panic attack would be pretty cool. That’s the real, tangible, productive understanding I’m selfishly after.
I’ll wrap up this rambler by encouraging you to be cautiously aware. Keep an eye on yourself and on your loved ones. Be aware of the language you use to talk about bodies, and leave value judgements out of it when describing food. If you live or have lived with an eating disorder, consider how to share in a way that’s kind, true, and respectful to your experience and to your audience. It’s possible, I think, to strike a balance between preventing harm and causing it. How? From where I stand/sit, that remains to be seen, but my sense is that there’s an answer hiding somewhere in the grey zone of which I’ve grown curiously fond.
De Morbo Sacro: Life and/with Epilepsy 