PHP Day 7: “It’s Rehab for Your GI System.”

After finishing an entire week in a Partial Hospitalization Program for eating disorders, I am both more optimistic and more pessimistic about moving forward. As expected, I had a big ME/CFS crash on Saturday, the day after the week of PHP finishes. It’s pushing my body past its limit. I’m willing to put up with the worsened symptoms as long as I’m not causing long-term harm, but it’s a fine line.

At this point, I’ve barely made any progress eating-wise. I suppose I’m consuming a wider variety of foods, but I’m still having a hard time finishing anything after breakfast. On a couple of days, I’ve had to do Ensure instead of eating the whole meal for two different meals/snacks.

They ask me what’s going through my head when I decide I can’t eat anymore, and it has nothing to do with fear of weight gain, or even with being afraid of the food itself. It’s the intense abdominal cramps and feeling like there’s no room left in my stomach. I’ll avoid TMI and just say I know it really is better to fall back on the nutrition drinks sometimes. But these are symptoms of gastroparesis, which I’ll find out if I have or not in a few days. The thought is that my dysautonomia is hindering my digestive process, and then the malnutrition has exacerbated it.

However, today, my therapist asked a vexing question:

“If you don’t think this is psychological, why do you think staying longer in PHP will help?”

I don’t know if she was playing devil’s advocate, or if she was feeling unsure of what she could do for me, but it unexpectedly upset me a lot. Isn’t your therapist supposed to be your cheerleader when you need that, helping you see that you have it in you to get better? Instead, in that moment, I felt the most discouraged I’d felt all week. There I was giving up time and energy to participate in a program my treatment team says will help, and then I felt the pessimism and lack of motivation kick in again.

The question also reminded me that I’m “different” and medically complicated, and it brought up bad memories of all of the PANS flares when it felt like there was nowhere to go: when I was in horrible mental pain, but the ERs might have sent me to the psych ward, and the psych ward might have given me medicine that made me worse instead of the steroids or IVIG that could have stopped the flare—all of the nights when my parents sat and watched me at home, feeling completely alone and helpless, refusing to take an eye off me for the several days until the oral Prednisone put me back in my right mind.

Having PANS means falling between the cracks of the healthcare system, having doctors who could help say there’s “nothing we can do,” and being left to hang out and dry while your life slips away. PANS is a medical condition that looks psychiatric, which some doctors mistakenly believe to be such, so then they don’t want to touch it with a ten-foot pole. Meanwhile, many mental health professionals lack the training or privileges to treat the medical cause.

So needless to say, I’m sensitive to the slightest insinuation that there’s not a place that can treat me. Even as I now live in the shadow of PANS rather than in PANS itself, it seems I can’t escape the reminder of the reality that my needs are apparently so different.

Except that they’re not that different.

Fortunately, the psychiatrist in charge of the program is a friend of my current psychiatrist—the de-facto PANS expert in my area—and it seems like the doctor at the PHP also gets me, acknowledging the complexities but also affirming that I can improve my situation. I repeated the question to her and got a better answer:

“PHP is rehab for your GI system.”

The idea is that adequate nutrition will help my gut to work better. Gastroparesis can be a consequence of malnutrition, although the doctors think a lot of mine stems from my autonomic nervous system dysfunction (dysautonomia) related to ME/CFS and possibly the GAD-65 antibodies. But the consistent eating should help whatever negative effects the months of weight loss have had on me.

It’s true that a lot of what’s covered in the therapy groups isn’t relevant to my situation, but no program is completely relevant to everyone. There’s no one-size-fits-all when it comes to mental health programs. You can take away what helps and forget about the rest.

And what helps is the consistency and accountability of being in a day hospital. It’s just not the same as relying on my parents to cue me and give me food every two hours, especially since they can’t always be around. I would certainly prefer to live at home full-time, but for whatever reason, it seems I’m making slightly more progress in PHP—and some progress is better than going backwards like I was.

I’m trying to stay hopeful that more time in this program will get my system functioning better again, but the hopelessness of having an incurable condition likes to sneak in and tell me there’s no point trying. I catch myself thinking multiple times per day that I simply don’t have what it takes to dig myself out of this hole of malnutrition and GI issues mixed with dysautonomia, and its this lack of faith that landed me in this hospital in the first place…

If you don’t think you can do better on your own, then you need the supervision and assistance from people who are trained in how to get you healthy again—people who should be helping you begin to believe you have it in you to change.

Therapy cannot cure my gastroparesis. It can’t fix my wacky heart-rate. It can’t cure the ME. But next time, I will tell my therapist that what it can do is help me reframe my negative thought patterns—which, in turn, might help me be able to do a little more on my own so that I can go home without losing progress.

P.S. Get ready for a break in our regular programming later this week for an interview with author and PANS advocate/survivor, Madeline Dyer, on her new poetry book Captive, which is about her PANS journey.

5 thoughts on “PHP Day 7: “It’s Rehab for Your GI System.”

  1. That’s the worst part of a condition like this, isn’t it–the feeling that not only are you alone in that the things that work for “normal people’s problems” don’t work for you, but also how it is really hard to keep the faith that one day you will be back to your old self?

    In any case, I assume you’ve exhausted all the options for “regular” GI treatments like Xifaxan for SIBO, various diets, etc? For me, SIBO treatment didn’t work until I got a fecal transplant because one of my rounds of antibiotics gave me C. diff (that transplant was the only blessing of having C. diff, believe me haha). But then the Xifaxan improved things, and I’ve been on a low FODMAP diet since. Luckily in the past year and a half I’ve managed to add in a lot more foods so I’m eating a reasonably balanced diet now, but for years I was on rice, potatoes, zucchini, the occasional salad, beef, pork, and chicken (and virtually nothing else). Though I never got unhealthily thin, I probably had some deficiencies back then too.

  2. I am so proud of you and you are truly doing great. I can relate to the square peg round hole feeling when it comes to adequate care and also to the feeling of “what is the point of this” creeping in. But you can’t give up hope. You are doing this!!! You are strong and amazing. You are an overcomer!

    And what you said about no one wanting to touch it… That’s how I feel at times about my boys. Looks psychiatric, but they are quite sick. Lyme, coinfections, CVID, hypothyroid, hashimotos, mast cell, allergies…I start to talk about it to people or uneducated doctors and they think I have munchausens. I’m afraid someone may call CPS on me due to a lack of understanding. Or that they simply have Tourette’s, are just brats that have clearly non-age appropriate tantrums, that it is a parenting problem, etc etc etc.

    We have to all stick together and help to find ways to navigate and bring more awareness and educate those who are clueless to this complicated thing called PANS. I think you are doing amazing. Thanks for posting. You will always be in my family’s prayers ❤️

  3. My 16 year old son is surviving with PANDAS since the age of eight and was officially diagnosed in 2015, it has been life changing and has caused my son to miss a lot of his childhood. He’s unable to attend school and has teachers come to our home for his academics, we went through a lot of miss diagnosis’s, he’s had Rheumatic fever with heart involvement, suffers with OCD, tics, and the list goes on. I was looking for a outlet for my son one day and came across your blog, signed up and read everything you post. I just want to say thank you for sharing your personal health issues and I don’t know you but feel connected through disease, I’m very proud of you for getting help and please for your self keep it up. We were Blessed to find a wonderful team of Doctors from Stanford’s PANS clinic, and my son will one day have some relief from PANS. I’m confident that with a great team of professionals you too will have relief. Sincerely Susan

  4. I wish you the best of luck. Wish we could find a program that would tbbreat me with EDS, POTS, PTSD, ARFID, DID, blindness, depression, and possible gastroparesis. I might need a feeding tube because none of the motility meds are an option. Ray


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