With this latest flare, I’ve been struggling with an eating disorder again. Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual. In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014.
This time, my eating problems began suddenly, a few days before a bad virus three months ago. There have since been periods when I ate without guilt and felt no need to restrict, but at other times I’ve suddenly become completely tormented by food—classic PANS. My eating disorder is, in essence, mental and physical torture.
PANS-related anorexia isn’t necessarily like typical Anorexia Nervosa, however. In my case, I’m fully aware that I’m too skinny, but I’m compelled to continue my restricting anyway. In the past, I’ve also restricted because I was convinced that virtually all food would make me throw up, so the only thing I would eat was one particular kind of fruit smoothie. Now, I’m afraid eating will make me gain weight and lose control of myself, so I’m obsessed with consuming a certain number of calories each day.
Living with my PANDAS-triggered eating disorder is like watching myself drive towards a cliff and not being able to stop, even though I’m the one behind the wheel. I know my behavior is dangerous, but I feel compelled to continue anyway. I know I’m losing an unsafe amount of weight, and I know it’s bad to not eat. But the anxiety caused by eating any more is so intense that I would rather continue to restrict. Even worse, there’s some part of me that derives a twisted form of pleasure from not eating.
Sometimes, I also still enjoy the taste of food, but I often feel bad about it afterwards. In my mind, no matter how little I’ve eaten, I’ve always eaten too much, so I’m always guaranteed to gain weight. I know what my doctors will say about me weighing only 96 pounds, and I know it’s dangerous to have lost 13% of my initial, healthy weight. But for some reason, I just feel like I need to keep going, and the torment surrounding this urge is too strong to resist.
All day long, I’m doing calorie math in my head, planning my meals for days. I feel guilty about what I ate, and unsatisfied with what I didn’t—PANDAS tells me I’ve never eaten too little. I’m beyond exhausted all the time, and I fear it’s because I’m malnourished.
I never imagined I’d become so ill again. I never thought I’d take things this far. Sometimes, I don’t feel like I have a problem, because I believe so strongly that I’m still in control of my eating disorder. But part of me knows that while I thought restricting would give me control over my body, it’s instead made me lose all control I had left.
On some level, I find comfort in the “control” I think I have through restricting, but deep down, I know I can’t continue like this. Deep down, all I really want is to be able to enjoy food again without any guilt and to be strong enough to run.
I’m tired of food controlling my life, and I’m tired of feeling so bad, so I’ve decided to start outpatient treatment for my eating disorder. And of course, I’m going back to see my PANDAS doctor to address the brain inflammation that triggered it in the first place. Finally, I’m going to have the Igenex labs run to test for Lyme and co-infections (in addition to a couple dozen other blood tests).
Although I’m scared to stop restricting, I’m so ready to be free and strong. I’ve decided that, somehow, I’m going to eat with pleasure again.