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We need to talk about eating disorders, broader disability, and HCBS. 
CN for institutions, eating disorders, description of treatment, mentions of abuse.
CN for institutions, eating disorders, description of treatment, mentions of abuse.
Before I say anything else, do not take this as permission to diagnose me or make suggestions on my personal treatment.
I have a treatment team and friends that I consider qualified to help. Strangers are not.
I have a treatment team and friends that I consider qualified to help. Strangers are not.
The basic reality of eating disorder treatment is this: inpatient, outpatient, separate counseling and nutritionists are the main options people currently consider, with the understanding that family and friends, as well as non-ED doctors, can be part of someone’s extended team.
Many eating disorders can be managed with an independent therapist and nutritionist. However, for people that need additional supports (e.g. you emotionally cannot make yourself put food to your mouth) outpatient or inpatient is often recommended.
I have issues with both.
I have issues with both.
Outpatient treatment requires you to get to a treatment center three times a day, to be monitored for breakfast, lunch, and dinner, or for you to go in the morning, and have therapy groups between meals.
You can sleep in your own bed, but at a functional level...
You can sleep in your own bed, but at a functional level...
Your days are just about recovery. This makes it impossible to work.
Inpatient has the same issues, with the added problems you would typically have in a psych ward or institution (lack of contact with the outside world, potential for abuse, lack of freedom).
Inpatient has the same issues, with the added problems you would typically have in a psych ward or institution (lack of contact with the outside world, potential for abuse, lack of freedom).
At a baseline level, before we even get into the problems I have with how treatment itself works-this is a problem because it prevents people from accessing care. Who? Glad you asked.
People who have to work to have rent, health insurance, or food at all (e.g. poor or most middle class people, and this tends to skew strongly towards people of color), people who can’t drive if they treatment area isn’t on public transit, people who have kids but no childcare
People who don’t have strong family connections. People who don’t qualify for paid leave, like freelancers. Bed or house bound people.
There’s more, I’m sure, but you get the point. This system fundamentally isn’t built for so many of us.
There’s more, I’m sure, but you get the point. This system fundamentally isn’t built for so many of us.
I strongly suspect this ties to at least part of how deadly eating disorders are-getting to and staying in treatment is impossible for so many people, and it’s incredibly expensive even if you have health insurance.
But, let’s move on. Let’s say that we somehow magically fixed those issues and anyone who wanted to access in or outpatient treatment could.
Both systems are still fundamentally broken, particularly when it comes to disability.
Both systems are still fundamentally broken, particularly when it comes to disability.
Outpatient: assumes that the way to heal from an eating disorder is to do nothing but focus on it almost all the time, with minimal times for other aspects of an emotionally fulfilling life for the duration of treatment-like family, friends, and hobbies.
Abuse survivors, if this is setting off alarm bells in your head: Yeah, me too. Inpatient and outpatient put control out of the patient’s hands at a basic level-and, frankly, that’s intentional. Treatment is structured that way-and it just isn’t the right fit for a lot of us.
Outpatient is also based on the idea that in order to teach you coping skills, you have to really intensely focus on them for a few weeks. And, again, sure that works for some of us-but a lot of conditions just don’t work that way, including some atypical EDs like ARFID
“Let’s teach you how to handle eating food regularly!”
By eating a rotation of foods out of my control for a month, without my safe foods, and with potential consequences if I can’t (which adds even more pressure and makes it likelier that food will be gross to me)? Not working.
By eating a rotation of foods out of my control for a month, without my safe foods, and with potential consequences if I can’t (which adds even more pressure and makes it likelier that food will be gross to me)? Not working.
Inpatient shares a lot of those issues, with the added reality that when you house a person 24/7 you’re putting a lot of trust in the people caring for them. Statistically and historically speaking, that trust hasn’t generally been earned.
There is a lot of abuse in institutions and all programs modeled after them (and yes, whether we like to admit it or not, inpatient is). There’s less data about abuse in ED programs in specific, but the fact that I find stories of it in all my ED groups speaks volumes for me.
The reality of the thing too is that these settings just aren’t prepared for medically complex and disabled patients-but they somehow expect to be their sole source of medical care for weeks or months. Most private treatments centers on my coast aren’t even ADA compliant.
Very few are specialized enough to understand conditions not directly related to anorexia, let alone provide a consistent baseline of care.
My team has 10-13 professionals, mostly specialists, at any given point. I wouldn’t survive in a basic clinical setting.
My team has 10-13 professionals, mostly specialists, at any given point. I wouldn’t survive in a basic clinical setting.
So, at a fundamental level, what am I saying here? I’m saying that treatment for eating disorders isn’t person centered, and that’s a problem.
Here’s what would work better: home- and community-based services for people with eating disorders.
Here’s what would work better: home- and community-based services for people with eating disorders.
Have a professional, or two or three, of your choosing come to you based around your schedule to help with food basics. Have a nurse around if you need one, for any ED-based meds.
If you want groups or one on one therapy, have the option of going online, as well as in person.
If you want groups or one on one therapy, have the option of going online, as well as in person.
Minimize hospital or doctor time to necessary tests or bloodwork, or meds that are impossible or illegal to use safely outside of a clinical setting.
Set timeframes based on how much help people need, and how long they need it before they consider themselves ready to do it alone
Set timeframes based on how much help people need, and how long they need it before they consider themselves ready to do it alone
This also opens the door to having your treatment team see what you can actually realistically afford to eat, to interact with who actually does or can cook in your house (e.g. if you have to train PCAs to cook for you), see physical issues in your current setup etc
Being able to fire and hire your own team and see them on your terms is key for multiply marginalized people, who may, for example, need someone who understands their specific ethnic background’s food traditions, or works well with MCAS and food allergies.
Might be obvious to me, but for non POC: the food in in/outpatient is always extremely white. It’s a problem for those of us used to/that want to/can mostly just eat non-white food
And I know, for those of us raised on the current system, this may seem too radical, like it can’t work-but the reality is, the current system *does not* work for a lot of people.
We need new systems to give those people left behind a fighting a chance.
We need new systems to give those people left behind a fighting a chance.
