Anorexia nervosa: two words that hold an unspeakable amount of pain and torment; an illness that takes over your mind and ravages your body; a disease that kills 5% of its victims; a nightmare that ruins your life; a condition that might happen to other people, but not to me… Until it did.
After more than ten years of living with PANS, I can still say I never know what it has in store for me next. Just when I was sure I’d beaten it into submission last semester, PANS came back and reared its ugly head primarily as anorexia. It started so suddenly—in a single day—when I developed a flu-like illness, and then I starved myself for four months, losing twenty pounds and everything that defined me as a person along the way. Just as I was about to end up in the hospital in August, IVIG treatment calmed my PANS enough for me to push past my food fears and begin to fight my way back to health.
In the beginning, I’d hoped that after my brain inflammation was more under control, I eventually wouldn’t have to deal with the anorexia thoughts anymore—that they would go away as suddenly as they came on. Perhaps this day will come, but so far, I’ve had to fight hard for every bit of freedom that I’ve since gained.
Although my brain has healed a lot since August, and most of my other PANS symptoms are nearly gone, dealing with the eating disorder has still been a beast. I don’t think I started out with a lot of body image issues, but I managed to pick them up at some point, so each time I’ve gotten my weight near its healthy range, I’ve freaked out and returned to restricting—and then gotten sick. As if that weren’t bad enough, when my treatment team is able to talk some sense into me after I lose weight, I just binge and purge the weight back on. So I’ve now been alternating between anorexic restriction and bulimic behaviors; I’ve been hovering around a healthy weight for months, though never staying anywhere for very long.
You see, even though I’ve earnestly been trying to recover since August, I’ve been afraid of what might happen if I completely let go and fully trusted my body to settle at its healthiest weight. I’ve been afraid of following my meal plan. I’ve been afraid of losing control. I’ve been afraid of feeling like a failure. I’ve been afraid of not being perfect. So I’ve only been partially recovered this whole time: no longer in imminent physical danger, but not yet mentally well.
However, a couple weeks ago, after yet another round of binges, I realized something… There was no way embracing healing could possible be any worse than the way I’d been living in partial recovery. If gaining weight made me miserable, then I might as well be miserable and getting better, as opposed to miserable and still stuck in disordered eating. So I decided that it was time to ignore my fears, start following my meal plan, and go all-in with recovery.
Since then, I can’t say it’s felt good to gain several more pounds, but I’m clinging to the hope that I’m heading for better times. I so often long to be as I was in the days before I became ill in April—when I was healthy, virtually symptom-free, seven pounds lighter, and without an eating disorder. I can’t change the past, but I believe that if I choose recovery, I can welcome a better future, free from PANS and Anorexia.
Your strength shows through in this post. Thank you for sharing and I am always cheering you on.
Thanks so much for cheering me on, Janet!
Praying for your complete recovery!
Thank you, Melanie!
Thank you once again for your insightful comments and helping us as parents understand what is happening to our children. You provide insight into this mystery that my own daughter cannot currently articulate. Please know that you are in our thoughts as you fight to conquer the misery of PANS. YOU ARE BEAUTIFUL INSIDE AND OUT.
Thanks so much for the encouragement and thoughts! It means a lot to know that my writing is insightful and useful for you. You all are in my thoughts, too, as we all fight this terrible disease together.