What Makes Recovering from an Eating Disorder so Difficult?
February 1 marks the beginning of Eating Disorder Awareness Month. Our current patients wished to honor that and help raise awareness around an issue that is extremely personal to them. Currently in treatment at residential and partial hospitalization levels of care, the issue is very real, and they are learning so much every day about themselves and their struggles. This post is written by them in an effort to help increase understanding around how challenging recovery can be in treatment and beyond.
In the US alone, 30 million people struggle with an eating disorder
Only 20% of those who struggle can get the help they need
Only 20% of that 20% can obtain help as long as is needed for lasting recovery.
As a result of a lack of access to treatment AND because of the extreme challenges of this illness (as we’ll share more below), relapse rates are high. The exact rates are quite different across the board depending on a variety of factors. Most statistics estimate that 60% of individuals who obtain professional eating disorder treatment will make a full recovery. Without treatment, 20% of those diagnosed with an eating disorder will die.
WHAT’S HARD IN TREATMENT AT A HIGHER LEVEL OF CARE:
When a person with an eating disorder can no longer sustain life and care for themselves at home, it is medically necessary for them to be placed in residential treatment. In a sense, their eating disorders have caused them to “lose the privilege” of making choices around nourishment, movement, and daily living activities. Therapy needs are intensive and monitoring must be constant. It’s mind, body, and spirit and it’s not one at a time. Co-occuring diagnoses are very common for those with eating disorders. Most aren’t just fighting an eating disorder. They’re also fighting anxiety, depression, OCD, PTSD, and/or other issues. Higher levels of care are very necessary and research supports they are often key to full recovery. We hope what we share below helps convey some of the challenges that come with these higher levels of care.
It’s a 24-7 job, so it’s exhausting. We don’t really get a break.
Recovery is lonely, especially in a world full of diet culture.
Most of the time that we choose recovery, we’re allowing our physical body to change. Getting used to life in a different sized body is really hard. It’s like learning to live in a new vessel. It’s hard to do both at once. Sometimes we outgrow our clothes. We aren’t comfortable in our own skin.
Treatment of any kind requires entrusting our lives to clinicians we’ve never known before…and we’re supposed to believe they have our best interest in mind. We often have to trust them with more than we’ve ever trusted anyone in our lives. For many of us, trust in general is hard.
The thing that has given you what feels like control your whole life, you have to give up and entrust to others.
In other struggles involving substances, the answer is often abstinence. But with eating disorder recovery, we have to face our fears 5 times a day for the rest of our lives. There are no off days. Most of us engage in eating disorder behaviors multiple times a day right up to the moment we walk in the center’s doors. Even though it’s completely necessary, it’s also a very abrupt transition.
The eating disorder fills a void and it was our go-to for so long. All of a sudden, we can’t go to that anymore. We don’t always know who we are without it.
Prior to treatment, we are free to make choices surrounding our agendas and free time activities. But when we enter treatment, those choices are gone. Our schedules are set for us. We trust it’s for our best to prioritize recovery, but to be away from society and jobs and school and family is a big change. We put our entire lives on hold without our loved ones. We are missing a lot, and that’s hard.
Often the eating disorder causes us to isolate. Coming to treatment removes that barrier. We never have alone time. We understand from a rational place that it’s not safe for us to be alone at this time, but it’s still a hard change and a difficult adjustment. We still want to be alone, but we can’t be. It’s a lot to be around other people every minute of every day.
The eating disorder fills a variety of emotional and mental roles (having control, feeling seen, numbing emotions, etc.). So when letting go of the eating disorder, we have to find ways to get those needs met in other ways… or not have them met temporarily since behaviors are no longer options.
There’s a grief in giving up the eating disorder. It doesn’t mean that we miss it so much that we’re going back to it. It just means it served a purpose. We’re also grieving the people we were with the eating disorder that we’re not anymore. Sometimes we worry we won’t know who we are without it and that other people won’t recognize us or like the new us or be able to forgive us…The thoughts multiply and can be paralyzing.
WHAT’S HARD IN STEPPING DOWN IN TREATMENT:
While there is initIally great excitement upon hearing a step down in level of care is recommended, we’re also met with new challenges. Our ED thoughts are deeply entrenched. We work hard on those in residential and partial hospitalization, but they don’t just disappear.
Our appearance might seem we’re doing so much better. But that doesn’t mean that what’s going on inside is better. The brain and the body don’t heal at the same pace.
We’re still facing our greatest fears 5 times a day. In residential it was hard, but it was done for us without any responsibility on our part. Now the responsibilities and choices around those fears are ours. We have to decide what we’ll eat, go to the grocery store, and face hundreds of food labels. Sometimes we go months without choosing anything while in residential. It can feel like too many options in the step down.
There can be good and bad days in recovery. We are not going to be 100% every day. Having a hard day doesn’t mean we’ve relapsed.
Residential is hard, but there’s safety in the shelter with safe people constantly reminding us of truth. The outside world is full of triggers without that shelter. We’re inundated with diet culture. It’s everywhere we go. We’re working hard to trust the facts of which our team and true sources reminded us, but the world tells us the complete opposite. And we have to live in that world.
We followed rules of the ED until treatment, then we followed the treatment center rules, but outside of treatment, whose rules do we follow? In treatment, we have constant accountability. At home, there’s no one checking on us regularly.
It’s helpful when we’re having a snack or meal for someone else to have it with us. In treatment, we’re used to eating with others. We’re fighting a battle that not a lot of others have to fight. Outside of treatment, when we have to eat and others don’t eat with us, it makes it so much harder. It makes us feel like an odd-ball, like black sheep. We don’t want to be different in that way.
It can be such a barrier to enjoy life and community. In the eating disorder and in recovery, so much of our world revolves around food - holidays, community gatherings, work events - any social outlet is often a major challenge. It’s hard to have the energy and capacity to enjoy and experience the things that people without the struggle enjoy. Going back to our favorite coffee shop and placing an order can be so overwhelming.
Often our plates look different than others’ plates in social settings. That’s hard enough. When someone comments on the difference, it makes it so much worse.
Any comments about our bodies are hard, even if positive. We’re trying not to pay attention to that/give it power. We’d rather you just see progress and not make the progress about our bodies. Our brains may not be in a healed enough place to receive those comments.
There’s a constant war in our heads. Even when we don’t show it on the outside, it’s raging. Our supporters may need to repeat themselves a lot when we’re stuck in our heads. It’s important for us to prioritize our outpatient sessions in order to give us support around this.
It’s scary because sometimes we worry we may not want true recovery. We have to keep choosing it even on the days when it’s so hard and we’re so tempted to go back. There’s no end date for when we’ll have to stop fighting. We have to keep choosing and trusting over and over again.
HERE’S WHAT WE KNOW…
