“Do I have to take my shoes off?”
I asked my psychiatrist in a trembling voice as I stared at the floor, too ashamed to make eye contact.
My hands were shaking as I reached for my shoestrings, because I already knew the answer, and I knew what would happen the moment my doctor saw the double-digit number on the scale…
It was July 2016, and anorexia was trying to kill me. A few days after I’d unknowingly caught Lyme disease that spring, I became possessed and overcome with the idea that I needed to restrict my food, even though I was borderline underweight to begin with.
Before then, I’d always had a positive body image and a healthy relationship with eating, but one fateful day in March, it felt like an anorexia switch turned on in my brain, and then I couldn’t turn it off. Two years later, it’s still stuck.
That’s what my autoimmune disease, PANS, does: you get an infection like Lyme disease, your immune system screws up and attacks your brain, and suddenly, you’re “mentally” ill… Except that the symptoms are just manifestations of the brain inflammation.
After that day, my life was completely controlled by a dictator named Anorexia who made me not only lose 20% of my already-slender body weight, but my muscles, my ability to run, my health, my happiness, and my personality.
“You’re going to be in the hospital soon,” my doctor warned, giving me a long, hard stare.
For a moment, I was terrified he was going to admit me right then and there. The idea of being forced to stop my compulsions was far more frightening than the potential consequences of starvation.
Thankfully, all my doctors know PANS can manifest as an eating disorder, so a few days later, I was getting IVIG treatment instead of only going off to a mental health center (my vitals were stable enough that I didn’t need inpatient care).
Sure enough, just as quickly as my anorexia had begun, thanks to IVIG and steroids, suddenly, I stopped being afraid of food and the life-saving weight restoration process. Anorexia isn’t supposed to go away that fast, so I assumed my behaviors were the result of the brain inflammation that was now dying down.
Slowly, over the next few months, I worked with a nutritionist to return to a healthy weight.
But the war had just begun…
Although I haven’t had classic anorexia since 2016, my behaviors slowly became disordered in other ways as I gained weight. When I got beyond where I was before I got sick, I freaked out and reverted to restricting. Then I binged the pounds back on. Then I felt bad about myself and restricted again. Then I binged more and more, and before I knew it, I was in an unending cycle of binging and then exercising or starving myself to keep from gaining weight.
But please understand: this isn’t about trying to conform to society’s beauty standards. I spend all of thirty seconds on my makeup each day and rarely style my hair, so my appearance isn’t exactly my top priority. No, my eating disorder is an uncontrollable compulsion that I’m terrified to stop—no matter how much I’d like to.
However, I’d be remiss to ignore the psychological factors altogether. You see, when PANS attacks my brain, the effect is that my personality, my ability to think/function, and indeed my very self feel wiped away. It tears apart my whole existence, and it can take months to recover. And in 2016, PANS ravaged my body, too. I thought my life was ruined when the disease returned, so I wanted everything to go back to how it was before—including my physique.
Gaining weight made my body look and feel different from the healthy me I remembered from before 2016. Every time I looked in the mirror, it was just one more painful reminder of how PANS had torn apart my life.
Ultimately, my eating disorder got completely out of control last semester, to the point that I was binging on thousands of calories and then exercising for multiple hours each day. My stomach would feel so full during a binge that I sometimes wondered if it would rupture and land me in the ER—yet I would keep eating until there was no food left in the apartment. The hours and hours of exercise exhausted me, my body hurt everywhere, and my legs were on fire… But I would slather on numbing cream and keep going.
So many times over the last few months, I wondered to myself, how much longer can I go on? How much longer can my body handle it?
This week, I found out. I finally reached my breaking point.
I was too exhausted to get up the stairs. I felt physically sick. My depression was spiraling out of control. Most of all, I had no mental space to think about any of the things that are important to me, because I was constantly counting calories and thinking eating-disordered thoughts.
a few days ago, I literally woke up, and I decided…
Yes, I’m done restricting. I’m done depriving myself. I’m done following my rules. I’m done thinking about calories. I’m done avoiding going out to eat with friends because of a lack of “safe” options. I’m done binging. I’m done working out for hours on end. I’m done feeling guilty about how much I eat. I’m done abusing my body into looking how it was never meant to be. I’m done being deterred from things that matter because of an eating disorder.
This year, in 2018, I’m resolving to beat my eating disorder once and for all.
No, deciding that “I’m done” with my eating disorder doesn’t mean it’s cured—the thoughts and tendencies are all still there. The only thing that’s changed is that I’m willing to try to ignore them. Recovery is going to be a long process.
With someone like me, it may be impossible to separate the autoimmune from the psychological. Did I decide to stop this week just because I was fed-up, or did my Lyme treatments knock out more brain inflammation? Who knows? Perhaps it’s a combination.
My doctor has referred me to intensive outpatient therapy. So I’ll be doing group, individual, and nutrition therapy for ten hours per week. And of course, I’m taking antibiotics and anti-inflammatory’s in case my physical diseases are directly interfering to some extent. We’re throwing the whole kitchen sink at my eating disorder so I have the best chance at healing!
I resolve that 2018 will not be another year spent trapped in my eating disorder—2018 will be the year that I fight back… And win.
34 thoughts on “Attacked, Trapped, Tormented: My War with PANS & Anorexia”
What a powerful post. Thank you for sharing such insightful comments. <3 Wishing you the best.
Thanks so much! <3
Very insightful x
Wonderful read. Good luck. I wish i had your drive
Thank you! It’s all about taking small steps towards recovery. Just one day and one moment at a time, as long as we keep putting one foot forward. Good luck to you, too! I followed your blog.
Yes you are right it is about small steps. Sadly i am a very impatient person and i think this may well be half the problem. I want to take big steps as i feel i am getting nowhere otherwise. Does that make sense? Thank you for following the blog, it means a lot.
Yes, that makes perfect sense. I find blogging a helpful way to look back and see how far I’ve come, even when the baby steps make it feel like I’ve made no progress… And thanks for following my blog, too!
you are right, choosing to be “done” with the eating disorder does not mean you are healed, but it is SUCH A CRUCIAL AND VITAL AND PHENOMENAL STEP. it is not the only step, but it is one that MUST indeed come about in order to one day live fully recovered and free. so, i am unfathomably proud of you. i remember the day i decided that i was DONE with my excruciating darkness, and i was going to CHOOSE LIFE every damn day for the rest of my existence, and it was undeniably one of the turning points in my recovery.
i’m so proud of you and sending you so much hope and strength.
Thank you so much for this wonderful comment and encouragement, Birdy! I’m about to go for my intake appointment at the eating disorder center, and I’ve been really nervous. So your words are very welcome right now. I’m so glad that you are living in recovery these days! Thanks for this comment and all of the good vibes you’re sending my way.
you can do the hard things, dear. i am holding you in my thoughts. 💙💙
Thank you so much! I went to my nutritional intake for IOP today, and I think everything will work out well.
thinking of you. 💙
This is really interesting, I had no idea an autoimmune disease could have this impact. Thank you for sharing.
And thanks for reading! Yes, most people don’t know that mental illness can sometimes be caused by an autoimmune disease/triggered by an infection–I sure didn’t until it happened to me. Thanks for following my blog, I followed yours, too.
Thank you ☺️ and thanks for talking about this, I expect lots of people have learnt something from this!
May 2018 be everything you want it to be. You can beat this. You’ve got this.
Thanks so much! I needed this encouragement today.
You’re welcome! 🙂
you will win, because that is what you want. 🤞🏻
Thank you! 🙂
Methinks you’re onto something there! To recover from something like this, a person has to be willing to try and determined to keep going. I know you can do it, though! Look at how you finished college against all the odds. Look at how you haven’t given up fighting this thing! Strength doesn’t mean you never fall. Strength means that when you fall you rise again! [continued in our chat]
Thanks so much, Emmy! You’re so right about recovery, so hopefully I can draw on the same strength I used to get through college. 🙂 Checking the chat, now….
Good for you! You are so insightful & explain everything so well!!