Before I get started here, I’m going to do a little bit of education. Because knowledge is power, right?
Ok, here is your mini lesson and it has to do with the treatment of eating disorders at Sheppard Pratt. There are 4 “levels of care.” They are outpatient, the intensive outpatient program (IOP), the partial hospitalization program (PHP), and inpatient. Outpatient means you’re seeing your therapist, dietician, and psychiatrist on a regular basis but outside of the hospital setting. IOP is a program that goes from 3:30-7:30 Monday-Thursday. It’s for people who need increased support and consists of group therapy, weekly check-ins with a psychiatrist, and dinner every night. PHP is a program that goes from 7am-7pm 7 days a week. This program is “on the unit” which basically means you’re in the hospital but you don’t spend the night. You eat all 3 meals on the unit, see your psychiatrist daily, and attend a variety of groups. Inpatient is for people who need 24/7 support, who are not medically stable, and/or who cannot be safe. You’re basically living in the hospital. So the more you’re struggling, the higher the level of care it is that you require.
If only it were that simple. The people who make the call as to how much you are struggling have no idea what’s going on inside your head. Sometimes YOU have no idea what’s going on inside your head. What you really need. Then you start throwing in things like stingy insurance companies and you have yourself in a real mess.
The reason for this mini lesson is because you learn a new language when you enter the realm of eating disorder treatment. And you take for granted the fact that most people have no idea what you’re talking about. It’s kind of isolating. It’s like you have this exclusive club.
But clubs are dangerous. They can be founded on either good or bad principles. Is the club rooted in illness or in recovery? The line is a blurry and often dangerous one.
When I took my LOA from work, I started IOP. Yeah, the thing that triggered my need for an LOA was my bipolar disorder and extreme anxiety, but let’s be honest. My eating disorder symptoms had re-entered the picture as well. And I’ve been through enough to know that if my eating isn’t right, ain’t nothing right. So IOP it was.
Last night was family night at IOP. On Wednesday nights, you can invite a family member or support person to have dinner and attend a group with you. I personally dread family night. It’s awkward and I never have anyone come. Traffic, work, child care, etc. I don’t even invite anyone, honestly.
But I can see the benefit. It makes sense. It’s supposed to give support people an idea of what it looks like to follow the meal plan. It also gives them a chance to ask questions and receive educational material. It serves a purpose.
Anyway. Last night was family night. Our dinner table consisted of 5 patients and 2 mothers. We talked like we usually do. One of the patients was “new.” I put new in quotation marks because it’s not her first time in IOP and most of us already knew her. But it was her first night in IOP…this time.
I’ve been in treatment with her before. She asked me how my daughter was. Couldn’t believe Skylar had just turned 6. I told her I’d found an old journal from when I was inpatient during my pregnancy. One of the pages was a tally sheet. The patients were guessing whether the baby was a boy or a girl. To my surprise, she said she remembered that day. The day they voted and I got to leave the unit for a few hours and I came back with an ultrasound picture in hand. It’s a girl.
I got a little sad. Some of life’s biggest milestones have been spent on the unit. Or at least in some form of treatment. I mean that’s a little sad, isn’t it?
But it didn’t make my cry.
That was later.
After dinner, we had group. One of the mothers who had sat at our table asked a question. She essentially asked the group leaders for statistics. She wanted to know the success rate. Because after attending several family nights and listening to dinner conversations, she noticed that we all talked about “that one time”…as if this wasn’t our first rodeo. And it was for her. It was her daughter’s first experience in eating disorder treatment. And she wanted to know why we all talked about “times” as if there was more than just this one shot.
I don’t think anyone noticed me wiping the tears from my face. As I looked around the room, I realized that she was right. I had previously been in treatment with probably at least half the patients in the room. She had every right to ask her question.
And it made me sad.
And it made me wonder.
What must she think of us? Us repeat customers who can’t seem to get it right?
What fear must she have for her daughter? That this may not be the last time she sits in a room full of eating disorder patients fighting for recovery? For her life? That our fate may in fact be hers as well.
The weight of her question was heavy. I felt like hopelessness hung in the air.
I mean what do you do with that? What do you do with the reality that an eating disorder relapse is more common than a first-timer would like to admit? What do you do with the fact that there’s a “first-timer” term at all? That repeat customers exist and that staff members still ask about your baby girl because you spent half your pregnancy and the first years of your daughter’s life in and out of the unit? What do you do with the fact that relapse is real and likely and sucks?
And how do you tell that to a mother?
I don’t know.
I haven’t been on the unit in over 4 years. This is my second time in IOP since then, but I’ve managed to steer clear of PHP and inpatient since March of 2012. Which I see as quite an accomplishment.
But there’s a click and I’ll admit to being in it. The repeat customer click. We wear it like a badge of honor because honestly what else should we do with it other than hang our heads in shame. So we hold our heads a little higher because we’ve been around the block a time or 2.
I’m not saying it’s a good thing because usually it’s not. We tend to meditate more on the bad than the good. We shouldn’t find camaraderie in illness, yet we do. And from the viewpoint of a support person, that must be incredibly scary. I mean I even scare myself.
But I think there’s more to it than that. I think camaraderie is important because otherwise you just feel crazy. And if we didn’t talk about the past, we’d forget about those important life milestones that were mixed in with the misery. We’d forget about the darkness and how far we’ve come. And those things should not be forgotten.
So here’s what I would like to say to a mother who fears her daughter might share the fate of the other patients in the room:
Would it really be that bad?
Because you know what I see in the room? I see a circle full of fighters. Of girls who’ve had plenty of chances to give up and let this illness kill them. Of women who make difficult choices daily. Who pursue wellness, even when they’re not entirely sure they want it. I see fight.
So yes, your daughter might sit in this circle again. She might talk about “last time.” She might share memories with a fellow former patient. But you know what that means? It means that your daughter is a fighter.
And what could be better than that.