At 93 pounds, I was so miserable and malnourished that I didn’t even know how ill I was. At the time, when I found myself sitting in an infusion chair receiving my third IVIG, I silently wondered to myself what I was doing there. How could I have PANDAS if I wasn’t “that sick”? Why was I getting such a heavy-handed treatment? But with my weight nearing the so-called “starvation” range, many of my organs weren’t working properly anymore. My psychiatrist warned that I’d be in the hospital soon.
Three weeks later, I now realize IVIG probably saved my life. Thanks to the IVIG and accompanying steroids, my food-related fears were 75% gone within the first few days after treatment, and they’ve continued to die down. Unfortunately, the damage to my body was already done. Even though I was having less mental torment related to food, I still had to repair my malnourished body and regain at least seventeen pounds. But how?
While there are standards and scientific studies on recovering from Anorexia Nervosa, there’s little in the literature on recovering from PANDAS-related anorexia, so my doctors, my family, and I have found ourselves in uncharted territory, trying to figure out how best to treat me. How much of the anorexia treatment protocol applies to someone who never had body-image issues? Should I be forbidden to know my weight while recovering? Should I, too, be prevented from exercise for six months, even though I never exercised compulsively?
At the moment, the consensus is that I not only have to do all of my usual immune-system treatments for PANS, but I have to follow many of the standard treatments for Anorexia Nervosa. For example, I see a nutritionist every week and send her lists of everything I eat. I have weekly weigh-ins without being told the number. I do therapy with the psychiatrist, who also oversees the medical aspects of recovery. And I’ll soon participate in an eating disorder support group. The hope is that if I have a PANS flare that compels me to restrict again, therapy will give me more tools to fight back while I wait for medical treatments to kick in. Plus, regardless of my mental state, my body is damaged, and I need the professional help of a nutritionist to be sure my eating is conducive to healing.
However, now that I’m feeling so much better both mentally and physically, all of this therapy seems excessive… Actually, to be honest, I hate all of my anorexia treatments, and I’ve been doing my best to convince my parents and my team that I don’t need so much help.
In many ways, this feels like a repeat of my sentiments towards my weekly Cognitive-Behavioral Therapy sessions for OCD when I was seventeen. I knew I needed to go to them, but I abhorred every minute because I felt so embarrassed discussing the obsessions I’d always kept to myself. At home, I often got into heated arguments with my parents about why I shouldn’t have the next appointment, I kept saying I was “just fine,” and I threatened to stop attending when I turned eighteen. But I stuck with it because the one thing I hated more than therapy was how my illness had ruined my life.
Similarly, now, I despise every trip to the nutritionist, every measurement on the scale, every mention of target BMI’s, every entry in my food diary. I want to block out that whole torturous, food-obsessed chapter of my life and forget it ever happened, but therapy brings to light the havoc anorexia wreaked upon my body and my life. I hate that my doctors apparently think I can’t even be trusted to feed myself. I hate the regimented meal-planning that therapy brings. I hate how much of my day I spend working on recovery. I hate that I feel like I’m in puberty all over again, because my body is starting to look different and feel strange (and I’m waiting for my period to come, just like a preteen).
But you know what? As much as I hate being treated for anorexia, I hate how life was at 93 pounds even more—I was so tormented and hemmed in by my obsessions and compulsions about food that I couldn’t see I was no longer living. If doing therapy on top of my medical treatments for PANS means giving me the best chance at never going back to that dark place, then so be it.
When I was discharged from weekly OCD therapy three years ago, I was indescribably grateful for the support my family and therapists had given me towards regaining my life. I discovered a freedom that I never dreamed was possible, because my family had pushed me to go to therapy. In the same way, as much as I don’t like to admit it now, I think I’ll look back someday and be grateful that my parents and doctors made me get treated for anorexia.