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What is sick enough?

What is sick enough?  Is sick enough a meaningless number or stupid hospital band?  Is sick enough the size of your thighs? Or that dead look in your eyes?

Is sick enough really what we are trying to achieve? What even is “sick enough” besides some bullshit phrase our eating disorders engrave into us?

I can tell you one thing, I have never felt “sick enough.” Even when I was on my death bed I still didn’t feel sick enough. And why? Because sick enough isn’t real, there will always be another demand from the disorder, inpatient or not, weight loss or not, there will always be more.

Take a moment to think about the stigma around eating disorders.  What does a stereotypical eating disorder sufferer look like, both in society, with this idea of an underweight cis-gendered white woman even within the recovery community and with professionals who deem the severity of this mental illness through the severity of the physical side effects shown on someone’s body. If there is one thing I’ve learned through my various hospital admissions it is that how someone looks has very little to do with what’s going on within their body and mind. Someone may look healthy and can still be severely ill, and gender means absolutely nothing.

That some false measure of “sick enough” exists is engraved into our heads the moment the eating disorder comes in.  And even when we open ourselves up to treatment, many people fear reaching out to ask for help because they are concerned they won’t be taken seriously. The eating disorder and frankly, some treatment providers intentionally or not, preach this idea that in order to be sick enough you have to reach some sort of bullshit status. Whether that be inpatient, a diagnosis, or a weight range this idea of sick enough manifests in various ways. When in reality it doesn’t really exist and everyone is “sick enough” to deserve help.

To go a little further, I’m now going to swim into the pool of treatment centers, how do you get into treatment for your eating disorder? Through a mental but primarily physical exam, which is a whole different issue in itself. If you’re lucky you’re in, assuming providers decide that you are “sick enough”. But what happens when you have an eating disorder plus other mental health issues? How can you receive help for both? Unfortunately overlapping help is often not accessible, so people are treated for one thing or the other, but rarely both. I’ve been turned away from receiving treatment for my eating disorder due to my other mental health disorders and I’ve also been turned away from treatment for my other mental health disorders due to my eating disorder. There is always a major fear factor when treatment centers are faced with multiple issues within a patient, so these other issues are commonly ignored.

Something providers lack is the knowledge that these mental illnesses are completely intertwined. With an eating disorder there is a lot of anxiety and OCD and eating disorder behaviors can be extremely connected. Underneath the eating disorder there are surrounding issues. Eating disorders are often avoidance behaviors, meaning that there is an underlying issue, but when turned away from help for these underlying issues due to fear from providers; what’s left is a lack of coping tools.

The solution, while hard to achieve, is entirely possible.  It’s a more collaborative approach. Because these illnesses are very connected it is valuable to have treatment that is unified. In my opinion, the line between treatment for psychiatric disorders and eating disorders is much thicker than necessary since both disorders are mental disorders.

Emily is a young adult who uses art and social media to express emotion, educate and provide support and hope for peers struggling with eating disorders and mental health challenges.  Follow her on Instagram @ reconstructingemily

Residential programs, partnering and loud music

When my son was 16, I drove him two and a half hours to his new residential program.  Amazingly, we both stayed calm, chatting about inconsequential things and turning the music up when things got emotional and we needed to stop talking.  This was a moment I had staved off since he was eight, the first time someone suggested he go into a residential.  I’d thought of it, scowled at the thought, rejected it, marshalled arguments against it and yet, here we were.

His arrival was anticlimactic.  The staff grabbed his things and he went off to browse DVDs and video games he wished he had at home.  I was reassured, signed things and was given a list of ways to reach the program.  On the two and a half hour ride home, I alternately gave myself a lecture, sobbed and turned the music up.  (Yes, it’s a family coping mechanism.)

The first night was really hard.  I woke up a lot, half listening for my insomniac child to wake up and wander in the night, feeling an emptiness in his room down the hall.  Our dog, Bonny, who usually slept on the foot of his bed, meandered around not sure where she should sleep. We got through that night and the next and the next. We adjusted to having space where he used to be, a space that would be filled only when he was home some weekends.

Over the next couple of years, I made that two and a half hour drive a lot.  Some weekends I would drive out Saturday morning, take my son on day-long outings, return him to the program and then come home at night.  The next trip I would make a round trip on Friday so he could come home, then another round trip on Sunday to return him.  I listened to a lot of loud music in the car.

Sometimes I say that if my family were a game show, we would be Let’s Make a Deal.  This time, my son and I had made one of our deals – if he went to the program, I would be there on most weekends. It was a long drive, but he was part of our family. I called a lot during the week, calls to him, to his program therapist and often to his teacher.  When staff wanted to treat his eating issues as a behavior, I called, explained, begged, threatened and called up the ladder to resolve it.  When there were conflicts with others or medication issues or he had a favorite item stolen, I jumped in and advocated for him. I took him for his haircuts, to buy clothes and all the things a mom does.  I held on to my rightful place as his parent with an iron grip and didn’t let go.

It turns out this was one of the best things I ever did.

Residential programs in this state and others are changing, or trying to, so that they shift to make space for parents as partners.  Lots of times this is still aspirational instead of reality, but with each little change there is no going back.  The national initiative, Building Bridges for Youth, tells residential providers that children have better outcomes when their parents visit, stay in touch and are involved both in the short and long term.  They also have the research to back it up.  Children go into residential programs as family members and when they are there, they remain part of their family too.  Families have incredible knowledge and resources to offer and parents have enormous expertise to draw on.  Yet, sometimes parents are welcomed, sometimes ignored, sometimes disrespected.  Often, all three attitudes can be found in a single program.

By the time my son entered a residential program, I was pretty exhausted.  I had been fighting, advocating, collaborating and juggling for a very long time.  We both had mixed feelings about it, but had limited options.  He had been turned down by six day schools and eight residential programs.  He needed someplace to receive therapy and finish high school.  I needed someplace where they had had teens like him before and I could trust that they knew what they were doing.  I already knew that clinical and program expertise didn’t always come with a parent friendly attitude, but I figured I could change that.  My exhaustion might have initially looked like acquiescence or passivity but it was soon apparent that advocacy had taught me a few things

It also helped that my son would ask staff if they had checked in with me when there was a change.  Even better, he often told them that he had to check in with me himself before he made a major decision.  The two of us didn’t always agree, but we talked things through and figured out how to get what was needed.  Sometimes, we made a deal.  I frequently told him that advocacy was the family business.  He would say, “I guess I’d better learn it, then.”

Like many parts of the mental health system, residential programs are usually designed to operate in a way that works for the program.  Routines and schedules are the same for everyone.  Same for meals and activities.  Parents can see the program as unwilling to be flexible and programs often see parents as unwilling to change.  When an engaged pushy parent like me comes along, programs have to decide if they want to cheer or groan.

Being very involved was one of the best things I ever did, lengthy drives and all.  At first I was involved because, well, that was how I parented a son with mental health needs that mushroomed over the years.  I was also involved because it was part of the deal I made with him and keeping promises was important to both of us.  I came to realize that my regularly showing up, calls, chats with staff and meetings with therapists set the groundwork for troubleshooting when we needed it.  It blurred the lines between us so we were more of a team.  It created respect and sometimes, admiration among us.  It probably led to better outcomes, too.  Cue the loud music.