The Perils of Partial Hospitalization—And Why I’ve Agreed to Go

“You need to go back,” my doctor warned me one day this summer.

I wiped the tears off my face and sighed. “I haven’t been able to walk more than a hundred feet in two months. You think I have energy for three hours of therapy three times a week?”

“You need the support… You’re getting worse and worse.”

I paused, knowing he wasn’t wrong—my psychiatrist is never wrong, and it’s maddening. “I know. But if going to therapy takes up all my energy, I’ll be too sick to participate. Isn’t there another way?”

In the end, I never did go back to that intensive outpatient program for eating disorders—the program that freed me from a seemingly unbreakable cycle of binging and restricting a year earlier. But when leaving the house at all, without even doing the driving, took all of my energy and sometimes made me sick for a couple of days, I couldn’t imagine doing a program that required three hours of therapy multiple times per week. Moreover, I didn’t have classic anorexia or bulimia anymore—I just had lost interest in food to the point of repulsion.

My treatment team let me try to gain weight with liquid nutrition and the help of my family, and it worked a little bit. I got out of the danger zone this fall, but I never got back to my healthiest weight.

In theory, I’ve been trying to do better with my eating ever since that difficult office visit this summer—the same one where I completely broke down after being asked if I was suicidal. Not too long ago, I had thought I was doing better because my moods were finally stable, and I’d been able to add more types of foods to my diet. But then I was in for a surprise.

“You look thin,” my PANS doctor said the moment I walked into her office for a routine follow-up a couple of weeks ago.

I was taken aback. This is the doctor that sees people with severe PANS on a regular basis who are about to be on death’s door due to malnutrition. Often, my local doctors have said I needed to gain some weight, but my neurologist has not seemed concerned at all. So when she commented recently, I knew I actually did need more help.

I went back to my dietician. We cooked up a plan: I had to eat three different foods for a meal three times a day, and two different foods for a snack twice a day—and they had to be generous portions. I did my best to follow it, but then I found myself realizing I was unintentionally missing lunch and struggling to get in two snacks because I felt full. And as my follow-up appointment approached, I realized my clothes were even looser than before.

“How has it been going?” My dietician asked this week.

I let out a dark chuckle.

“What happened?”

“I’ve stopped trying… There’s no point anymore.” I paused, completely stone-faced. “I don’t think I can get out of this hole.”

And those are the words that got me admitted into a partial hospitalization program (PHP) for at least the next week.

I’ve never been admitted to a psychiatric hospital. I’ve never stayed at a residential treatment center. I’ve done intensive outpatient therapy before, which was nine hours per week. Partial hospitalization, however, is eight hours per day.

Tomorrow, I start, and I’m nervous as heck.

I feel like I’ve failed. I feel like I shouldn’t have let my weight loss get so bad. I feel like I should’ve been able to turn this around myself. I feel like being thrown into the treatment center is punishment for bad behavior.

There are a lot of things about PHP that make me nervous, and first is whether or not I have the energy for it. The good news is my energy level is better than it was this summer when IOP was brought up. I know many people with eating disorders have low energy due to the lack of nutrition, but this is different because I have ME/CFS. Imagine you have so little energy that walking half a block means coming home to lie down for the rest of the afternoon. Imagine having so little energy that just getting up to grab a snack is sometimes too much—a big reason I’ve ended up in this situation.

Because of ME/CFS, I feel worse now than I did four years ago when I got down to a weight lower than what I weighed in sixth grade and was days away from inpatient—and I felt pretty awful then. No one believes me, but I stand by the frightening comparison. My point is that I’m much frailer than the people this clinic is used to getting, and I don’t know whether they’ll understand if I say I must go lie down and sleep for an hour to prevent a crash.

I’m concerned I won’t even last a day, and then what can I do about my weight?

And also, what am I going to talk about for eight hours a day? Do I really have that many problems?

But most of all, I’m afraid of the mealtimes and snack times that PHP entails. That’s the whole point of me going—to be supervised and made to feed myself enough. The hope is that I can retrain myself to eat healthy portions on a regular schedule.

Unlike people who are there for eating disorders, however, I’m not afraid that the meals will make me gain weight. I’m not even afraid of the food itself—it’s the fact that I know I won’t be able to eat all of it like I’m supposed to. I’m afraid of failing.

I don’t want to feel like I fail every single time I have to eat. I don’t want to be the one pushing food around my plate rather than eating it, while everyone else properly feeds themselves. I don’t want to be the one that the dietician comes to sit next to as she whispers, “Can you try to have a little more?” I don’t want to be the one forced to chug an Ensure or two at the end of the meal hour based on how much of my plate I left untouched. And since this is how all of my mealtimes go as it is (minus the Ensure), I know this is all going to be a daily occurrence. So I dread the embarrassment.

Actually, I’m dreading almost all of it.

The tricky thing is that I’m not there for anorexia or bulimia. I’m there because I’m not eating enough. Most foods are extremely off-putting to the point I will sit in front of it, hungry, but not able to eat. I’ll try a few bites, but sometimes I’ll feel like I’m going to gag. I have a few foods that never do this to me, so I eat a lot of them. In PHP, they’re going to try to make me eat all kinds of foods, which sounds highly unpleasant.

My psychiatrist was throwing around the Avoidant-Restrictive Food Intake Disorder label the last time I saw him, which I meet criteria for. It’s a little dicey knowing ARFID-like behaviors can also be a symptom of the brain inflammation I would get from PANS, but I have a sense it’s something else right now. I’m much too functional and not having any other PANS symptoms at all: my moods are fine, I’m not having tics, and my cognitive skills are normal. Also, the monthly steroids and IVIG I’m already on haven’t helped my eating. I think what’s happening is a consequence of other physical illnesses I have that affect my appetite, and then getting stuck in a vicious cycle…

I’ve started having GI issues in the last few months, and so many foods set them off—yet few foods besides gluten are consistent enough that I know what to avoid. Part of it is related to my dysautonomia and my autonomic nervous system not moving food through me at a normal rate—it just sits in my stomach, so then I feel full after two bites. Eat any more, and I get nauseous. No one should be surprised at how little I manage to eat.

So here’s the question: how is PHP going to magically cure my dysautonomia?

It won’t, and that’s why I’m afraid I won’t make progress, and they won’t understand why. And the “no going to the bathroom for an hour after meals” rule to prevent people with bulimia from purging sounds like a disaster for anyone who regularly suffers GI distress. But what can they do if I leave therapy and go anyway? Are they going to stand at the door and restrain me?

I have no idea if this program is really going to help me or not, but I suppose it’s worth a try. I’m losing weight so quickly that my dietician warned I’d end up in residential soon if I don’t do something now. PHP is my best shot at avoiding that.

Two years ago, I was even more antsy before going to the intensive outpatient program, and it ended up being a great and helpful experience. All of the other women there were very bright and interesting, and I actually enjoyed the social aspects of IOP.

I was skeptical before I started back then, too, and yet it worked beautifully. So I hold out hope that this time around will be good for me, too. Send me good thoughts for this week!


12 thoughts on “The Perils of Partial Hospitalization—And Why I’ve Agreed to Go

  1. I am following this closely. My 17-year-old daughter with PANS is losing weight again like she did after a big flare in 2017. My other 17-year-old daughter has dysautonomia (POTS, hEDS), so I’m wondering if the daughter with PANS might have it as well. Or maybe it’s just the brain inflammation. Anyway, people are talking about putting her in a PHP, and I don’t think, unless they know how to treat PANS, it would be a helpful experience. I’m hoping it is a helpful experience for you!

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    1. Yes, it’s tricky to do PHP or IOP with PANS. For me, I felt like I got to make the most of therapy once the inflammation was under control. If it’s not, it’s hard to make progress. That said, with food issues, sometimes you need the professionals to help you get your weight to a safer place even if PANS isn’t completely controlled yet. It can’t always wait until you’re in the right headspace. Sometimes the supervision and accountability can help, but I’d say they need to understand what you’re up against while fighting PANS––they need to expect it all to be harder for you and to not make assumptions about your eating disorder and behaviors. I’ve had to do a good bit of explaining to the people here, but they’ve been open-minded and helpful so far. I hope your daughter gets what she needs!

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      1. Thank you so much. Yes, lots of explaining. And not only are assumptions made about her eating but about my apparent lack of care (since she is still – barely – minor). And this is, of course, all while people insist they believe I’m doing all I can. One of the big problems with her form of PANS symptoms is that the flipped sleep schedule exacerbates the eating problems. And I’m not sure how a hospital program would deal with that. We have a great school psychologist at her high school. But even she was freaking out at the last IEP meeting. One thing she said that really stuck was that, before all the weight loss, she was thinking of my daughter’s issues in psychological terms. Now, with the weight loss, she is thinking of it as a medical issue. I thought she got it. But even she doesn’t. I wanted to tell her, “It’s always been a medical problem!” I’m tired of medical professionals and other therapists separating brain medical problems from the rest of the body medical problems. The brain is part of the body, yes? And it gets ill, too. I think I would rather a doctor say, “Yes, your brain has an illness, but I don’t know what it is, but let’s do all we can to figure it out!”
        Take care, Melissa

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        1. That must be hard to feel like they’re making assumptions about your parenting. A lot of IOP programs are in the evenings, so I wonder if that might work for her. But that’s frustrating that no one seems to understand the connection between medical and mental! It’s all medical. I hope you find something or someone that can help your daughter. Please know her eating problems aren’t your fault. My parents are blaming themselves for me ending up in PHP, but they shouldn’t.

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  2. I am sending you all the love and positive energy I have!!! I have two kids with PANS and have followed your struggle closely. You WILL get through this. If your blog has taught me anything, it’s that you are a fighter. You are an inspiration to so many people and a light in our lives. Remember that tomorrow will be different, that yesterday is done and you are here. Being awesome. Being real. Hang in there and know that there are people who you’ve never met who think about you daily and are pulling for you!!!!!

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  3. Good morning! Our PANS 12 year old son started a partial program in November because of school refusal. As the mom, I felt like a failure, it felt like he was so bad and this was all we had left to help him. Please remember we are all pioneers in this illness and one day your blog will be looked back on because of your strength and knowledge. I told the doctors at the partial program that our son is now physically healthy but because of years of misdiagnosis he has a lot of deficits and this program is pure physical therapy for his brain…..not a last resort. Intensive therapy is a must for PANDAS/PANS patients. Intensive immune support and healing along with brain training which is this partial program for him. Shockingly, we were all wrong about our fears of this program….the first week sucked, but then it turned into an unexpected much needed blessing……it has become a crucial part of his healing. Best of luck!!!!!

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    1. Thanks so much for sharing this success story. I’m glad that program helped your son so much. It’s definitely true that you can be physically well from PANS but still dealing with the fallout––that’s what I feel like I’m doing right now. Thanks for the encouragement!

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  4. It sounds like this is going to be really hard for you but at the end of it you’ll come out stronger and weller. I know it’s daunting (and they should make allowances for you to to the bathroom!) but you got this!

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