It Takes a Village
Mike Kraft is a former sport journalist and member of The Emilee Connection- Adult Eating Disorder Support Group. He is intelligent, witty, kind and determined. Mike’s talents and attributes shine through and enlightens us as he openly shares reflections about his journey with Anorexia.
Mike can be reached at: mkraft418@gmail.com
National Eating Disorder Awareness Week has come and gone. If you’re reading this and had no idea that NEDA Week was Feb. 27 – March 5, don’t fret because you're far from the only person. Sometimes it feels like we're closer to making contact with alien life than we are at making any significant breakthroughs when it comes to eating disorders. In the 18 years I’ve suffered from an eating disorder, I’ve seen cancer go from being a death sentence to being fully treatable if caught early enough. In the 18 years I’ve suffered from an eating disorder, I have seen new drugs and technology developed to better help people manage their diabetes, cholesterol and high blood pressure. In the 18 years I’ve suffered from an eating disorder I’ve seen people be able to restore their vision through the use of LASIK surgery. In the 18 years I’ve suffered from an eating disorder, I’ve seen technology make it possible to print fully viable 3D organs. Heck, in the 18 years I’ve suffered from an eating disorder, I’ve seen products developed to help treat baldness. I’ve witnessed all of these advancements, and yet here I sit, waiting for it to be our turn. Where’s our breakthrough? The pandemic brought mental illness to the forefront and the number of eating disorder cases rose with the long periods of isolation. We beg for a cure. We beg for effective treatment. While a one-size-fits-all approach has yielded inconsistent results, it’s still the standard. In a world where good is never good enough, eating disorder research and development and treatment barely eclipses average. When’s our breakthrough coming? Is our breakthrough coming? How far down on the list are we?
It starts with us – the eating disorder victims. We can’t have someone else recover for us. We have to do it. We need help along our journey, but we have to put in the work, and it’s hard work, nearly impossible work. But rewarding work. Recovering from an eating disorder is the hardest thing any of us are ever going to have to do in our lives. Pushing a 10,000-pound ball up an icy mountain wearing ice skates is an easier task. Holding our breath underwater for 24 hours straight is an easier task. Having a civil conversation over politics is an easier task. That’s why it requires complete buy in. You can’t half-ass recovery because you’re going to surrender the second it gets difficult, which is soon after the decision to recover begins. Recovery is difficult from Day 1 because it’s a life-changing decision. The way you lived your life with the eating disorder will be eradicated and the thought of making such a drastic change is terrifying. Your motivation to recover must come from within. You have to want it for yourself. You can have external motivation, like family, friends, and job but the internal motivation has to be there too because you’re the one making all the changes. You’re the one that’s going to feel the discomfort. You’re going to be the one who feels all the emotions that come from recovery. It is supposed to be difficult. That’s how you know you are on the right track.
No one’s recovery looks exactly the same and no one’s recovery is linear. Understand that there are going to be many bad days – especially in the beginning – but recovery gets easier the further into you get. But you’re allowed to struggle, both physically and emotionally. However, don’t struggle in silence. Talk to a family member or a trusted friend to get you through the tough times.
Be honest about your recovery. If you can’t do it on an outpatient basis, seek higher levels of care. I know it’s not ideal and everyone’s thoughts on treatment facilities differ, but sometimes it’s necessary and there’s no shame in that. I opted to recover at home, but that was only after spending a month in the hospital for stabilization purposes. I had the good fortune to have both a supportive family that was willing and able to take over my meal plan, and an outpatient team that was in sync with one another and had the same goals. But that’s not the case for everyone. Only you know what treatment approach works best for you. Recovery is difficult, but it doesn’t have to be horrible 100 percent of the time. Recovery is what you make of it. You don’t have to like it, but understand that there is a better life ahead for those that want it. Never think that recovery isn’t possible because it is. A relapse isn’t the end of the road. No one ever gets it right the first time.
Next up is parents. Whether you live with your child or not, you need to be there for them. I know it can be difficult and I know how frustrated my parents were at times, but we need you to be our parents. My mom attends a family support group once a month, and I’m always bothered when she’d come home and say she was either the only family member there or there was just one other family. Statistics say that 10 percent of the country suffers from an eating disorder. There are 749,000 people in my hometown of Rochester. I have a hard time believing the number of Rochesterians suffering from an eating disorder that still have living parents is in the single digits. I’m sure it’s in the thousands if not tens of thousands.
Support goes a long way, even if you don’t think your child is appreciative in the moment. We are, and the healthier our brains get, the more we become aware of everything you’ve done for us. I hurt for those that don’t view their parents as allies. I hurt for those that are constantly made to feel bad for their condition because not only do their parents not understand, but they don’t want to and put no effort in wishing to educate themselves. While eating disorders are extremely complicated and as hard to grasp as learning a second language, there are opportunities to learn. The Internet is full of valuable information that is accessible by a simple Google search. Support groups are out there. They serve as great opportunities to hear stories from other parents and get tips that may be useful to your situation. You’ll learn that you’re not alone, just like how I learned that I’m not alone by attending my own support groups.
Don’t give up on us, even if we give you every reason to do just that. Superpowers may only exist in comic books and movies, but the closest thing there is to a superpower in the real world is a mother’s intuition. You carried us in your womb for nine grueling months. You know us better than we know ourselves at times. The bond between a mother and her child is unlike any relationship in this world. Trust your intuition. You know what to do when we come down with a terrible cold. You know what to do when we fall off our bikes and bruise our knees. You know what to do when we’re in pain. Yes, it’s not as simple as making a bowl of chicken noodle soup for our cold or applying some ointment and a band-aid to our wounds, but there are ways to show your support, even if it takes a little trial and error. Admittedly, we can be difficult to deal with at times and you won’t understand why even the littlest of things can send us into a meltdown but don’t give up on us and we won’t give up on our recovery.
I found that having supportive parents made it difficult to allow myself to succumb to this disease. Had my parents shown no real care for my condition and ridiculed me for it and seen me as an embarrassment, it would have been so easy to just let myself die because I wouldn’t feel guilty about what my absence left behind. But I knew how much my death would have decimated my parents’ lives. They would have grieved for the rest of their lives and blamed themselves. They would stop living. They wouldn’t move on. They would never laugh again. They would never have fun again. Even when I was in the deepest of holes, I knew I had to find a way out. While they couldn’t provide me with the latter, they could light the way. When my eating disorder tried to convince me that no one would miss me if I were to die, I always used my parents as a counterargument. They’re why I’m still here.
Treatment facilities. We’re not asking you to be as enjoyable as an amusement park, but could you at least try to be more desirable than swimming in a pool filled with piranhas? Throughout my recovery, I have fought tooth and nail to avoid any type of treatment facility, whether it’s hospitals, residentials or partials. I don’t like them. I don’t like how they operate. I don’t like their methods. I don’t like how they feel like a flawed utopia. Being sent to a treatment facility shouldn’t feel like a punishment, but for a lot of people it can be.
Treatment facilities need to do a better job of both comforting their patients and seeing them for more than just the eating disorder. Too often when patients speak their minds, they are dismissed and told that the eating disorder is telling them what to say. Treatment facilities are an intimidating place. Patients go from living in their own beds with full autonomy to relocating to a different state, sharing space with a ton of strangers, and being required to abide by the rules and expectations list the thickness of a Merriam-Webster dictionary. It can be overwhelming and terrifying. I will never understand the one-size-fits-all approach so many treatment facilities operate under. They tell you every eating disorder is different, yet try to jam a square peg into a round hole and then get mad at you when you’re not succeeding. Treatment should not be a “fake it until you make it” mentality. You should actually want to get better, but too often the grind of treatment facilities turns someone’s mindset from recovery-oriented to “I’m just going to do what they tell me so I can get out of here faster and then go back to my old habits.” Heck, I’ve done that.
I’m a 32-year-old male with restrictive eating patterns and an exercise addiction. My treatment protocol should not look the same as the one for a 14-year-old girl with bulimia, but it is. We eat the same food in treatment, we attend the same generic groups and we have the same basic privileges. We should all have a doctorate in DBT, CBT and ACT at this point. You’re not teaching us anything we don’t already know. We also know everything there is to know about the exchange system and what function carbs, fats and proteins serve the body. We get it. Teach us something new. The only individual attention we get is a once-a-week meeting with our therapist, which isn’t anything you can’t already get on an outpatient basis. You would think living in a facility 24/7 would grant you more than a one-hour appointment each week. At no point was my exercise addiction addressed nor was a plan put in place. Instead, the answer was to be stagnant in treatment and then figure it out yourself once you leave.
While I understand the tier system, it’s done the exact opposite way it should be implemented. When you enter treatment, you have almost no privileges. You’re not allowed movement. You’re not allowed electronics. You’re not allowed meal choices. Does that not feel like a punishment? We made the difficult decision to uproot our lives and get help, and as a result, we have everything taken away from us. I used to lose my video game and TV privileges when I got grounded for doing something wrong. So how do I convince myself that I haven’t done something wrong by going to treatment when it results in the same thing? When I was in the hospital, the first three days I wasn’t allowed any electronics, I couldn’t watch television and I couldn’t wear my own clothes. I couldn’t understand the reasoning behind this. Maybe it was because I was supposed to use that time to reflect on why I was there. The reason why I was there in the first place was because I had already reflected.
Instead of having to earn privileges we’ve all had since elementary school, why not allow everyone to have the full gambit of privileges from the onset, only to lose them if you’re not complying with treatment? That way everyone is on the same level from the beginning. It would help curb the already rampant competition that treatment breeds. How could I not be jealous of the person who has been here for two months and has every privilege under the sun while I can’t even choose between a turkey sandwich and a meatball sub? Even though I’m not angry at that person, they become the target for my frustration.
Everyone should be allowed to choose their meals from a list of a few available entrees each day from the very beginning. Obviously, patients can’t have full reign over their meal plans because treatment facilities are limited in their resources, but allowing them to pick from a limited list of entrees makes meal completion easier and meal times less stressful. After all, if the goal is 100 percent meal competition, why not let us choose the options we like the best? The one treatment facility I attended let us choose between one of three entrees for each meal and choose between one of two snack options for the evening snack. The side items and portions were determined by the dietician according to your specific meal plan. It was a fair system, however, you still had to earn the privilege of choosing your meals. You didn’t earn the same freedom a child has at home until you completed 100 percent for three consecutive days. No one needs to eat pizza or pasta or apple pie to show they don’t have an eating disorder. It always baffled me when treatment facilities would make someone eat a fear food, watch them be unable to do so, destroy their self-esteem in the process, and then either force them to drink a liquid supplement or shove a feeding tube up their nose all because you made them eat something they feared instead of allowing them to choose a more palatable entree. Adequacy and balance are what’s important, not fear foods.
So instead of making us earn basic human rights, instead make us lose them. We have no one to blame but ourselves if we aren’t meeting the requirements and therefore have privileges taken away, but we will get frustrated and rebel when we feel we aren’t receiving our proper acknowledgment when we are working just as hard as the person with more privileges. Recovery is hard enough. A healthy life should be the only reward we’re working toward, not a 30-minute evening with our phones so we can talk to our parents for the first time in two weeks.
I could continue to go on and on about treatment facilities and how they can improve, but there are other areas to touch on. Treatment facilities do the best they can overall and sometimes feel like they have their hands tied. They can’t waste any time on experimentation or personalized treatment plans because at times they aren’t the ones calling the shots. That’s where we come to another party that plays a pivotal role in the eating disorder community: insurance companies. Insurance companies are probably the most hated entity for people with eating disorders. Due to the extremely high cost of treatment, we are at the mercy of the insurance companies to cover our medical expenses. My month-long hospital stay this year came with a $73,730 medical bill – roughly $2,400 per day – that thankfully was fully covered by my insurance. But that’s not always the case. It can be a nightmare to get insurance coverage for treatment, especially if you are on a state Medicaid program because your options are extremely limited. Getting approval from insurance doesn’t lessen the anxiety because there’s no guarantee how much they will pay or how long they will pay. Insurance companies may think they are doing you a service by agreeing to pay for 75 percent of the total cost or paying the first $10,000 of care, but 75 percent of coverage for two months’ worth of treatment still leaves you with a bill more expensive than four years of college, and $10,000 might seem like a lot, but that’s roughly one week of treatment. Many treatment facilities want a patient to stay at least two months.
Insurance companies need to put in the effort to learn about eating disorders. Their ignorance on the subject comes with mountains of evidence. Insurance will agree to cover a treatment stay, only to reverse course two weeks in, forcing the patient to withdraw. You’re constantly under the watchful eye of your insurance company. Give them one reason to pull coverage and they will. I never understood why a company you pay monthly to provide you with insurance will do everything in their power to not do their job. Recovery isn’t linear, but insurance companies believe it needs to be. It forces treatment facilities to work at a much more rapid pace, which only negatively affects the patients. Weight restoration is difficult enough, but it is made that much more difficult when it happens twice as fast as medically necessary, and it’s only done that way to keep insurance companies happy. They aren’t going to pay for someone to not make progress. They are also not going to pay past a certain point. Once a patient checks off all the physical boxes they are looking for, they assume the work is done and that level of care is no longer necessary. This is where insurance companies need to have representatives talk to the individuals themselves and not just rely on the physical data. Physical health is not the same as mental health. A person can be physically healthy but still require the mental aspect of treatment for months after a healthy weight is attained. But insurance isn’t going to pay $1,500 a day for you to see a therapist in treatment and therefore cut you off, usually without more than 24 or 48 hours notice, leaving facilities scrambling to formulate an outpatient plan. Ironically, most outpatient therapists don’t accept any form of insurance because even though the session will be free to the patient, insurance will only cover a fraction of the fee, leaving therapists with no choice but to make patients private pay.
At the end of the day, our voices can only travel so far. We can scream from the mountaintops for better access to treatment, but we don’t have the authority to make laws. But there are people who can and they are next on this list. Lawmakers. Did you know the first piece of legislation to be signed into law that specifically stated eating disorders in the text came all the way back in…2016? The 21st Century Cures Act was signed into law in December 2016, which increased eating disorder prevention efforts and made access to treatment easier. It took more than eight years after congress passed similar legislation requiring most insurance companies to provide equal coverage for mental health care and physical health care to include eating disorder treatment because the language in the 2008 law didn’t mention eating disorders by name. So insurance companies have been finding loopholes not to pay for eating disorder treatment for 15 years now. While the law gives insurance companies less flexibility to deny coverage for eating disorder treatment, they are still denying treatment when they can. A law is only as good as the watchdogs in charge of making sure insurance companies are compliant. And not all insurance companies have working relationships with specific treatment facilities, which means that you would be on the hook to cover any extra cost past what your insurance plan covers. So if a two-month stay at a residential facility costs $60,000 and your plan covers $10,000 in medical expenses per year, you’re going to have to pay $50,000 out of pocket, leaving that a non-viable option for almost everyone.
Unfortunately, something like universal healthcare is extremely unlikely to ever happen in the United States because of just how big the insurance companies are. There is no feasible way to consolidate all of the insurance companies down to just one. I don’t know anything about all the red tape you would have to bypass, but if I was looking to pass a piece of legislation, the language of the bill would require all insurance companies to cover – in full – 60 days of treatment, whether it’s hospitalization, residential, PHP, or IOP. It wouldn’t need to be consecutive. It would be 60 days per year, which wouldn’t be allowed to roll over to the next year. It might not be enough for many, but it would pretty much ensure someone got one solid attempt at recovery each year. It could save someone as much as $60,000-$75,000 in medical costs. Insurance companies should be required to financially assist their policyholders who want to get help and there shouldn’t be limitations on where they can go and a certain criteria they need to meet. Anybody who wants help is “sick enough.” They shouldn’t need to further destroy their physical health to get insurance to approve their claim. My insurance only covers hospitalizations and a residential facility that only accepts females, so I really don’t have options. One place hates my insurance so much that not only will they not accept them, they require you to have dropped them for three months before they accept anything other than private pay.
The last part of this village is society itself. Until we stop becoming so obsessed with physical appearance, eating disorder cases will continue to increase exponentially. At this point, it’s just become ingrained in our culture. We’re so obsessed with our physical appearance that people with diabetes can’t get life-saving medication because people who don’t have diabetes are depleting the supply because of a side effect that causes weight loss. Weight loss products are everywhere and most don’t work, but no one cares. Everyone wants that cheat code to look more attractive because deep down I don’t know if anyone truly has a positive body image. People on the cover of magazines and billboards are photoshopped beyond recognition because the industry knows they will sell more products with more attractive looking people as their spokesperson. No superhero portrayed in the movies has a beer gut. Every love interest in the James Bond movies all seem to have the same exact measurements. The model trying to sell you their perfume looks like they were built in a laboratory. And even though those same actors and models will tell you how grueling it is to have to look like that, we still want to be them.
We live in a country where weight loss is viewed as a positive thing. It means you are disciplined and hard-working. And weight gain is viewed as a negative thing. It means you are lazy and weak-minded, someone that easily gives into temptation. How many commercials have you seen where someone is giving a testimonial about how they lost xxx pounds and how they feel amazing and have more energy than they did when they were a teenager? You probably see at least one of those every day. Now how many commercials have you seen where someone is talking about gaining xxx pounds and how great they feel? Probably none. The weight loss industry is an incredibly profitable business venture. Just ask Weight Watchers, Atkins, Jenny Craig, Slim Fast, Nutrisystem, Noom, FitBit and your local gym. If you Google “weight loss plans” one of the first entries is from U.S. News ranking their top twenty-four diets for 2023. The fact that there are so many diets out there that a top 24 list doesn’t even cover all of them is a problem. The most popular New Year’s resolution every year is to lose weight and get in shape. Every company seemingly has their version of a fitness tracker. The messaging is inescapable.
But progress is being made, even if it is not happening quickly. The mannequins you see in stores now more closely represent the average human body. Some countries have placed minimum BMI requirements on their fashion models. High schools are banning weight-cutting for wrestling. Doctors are more properly trained on the warning signs of eating disorders so early intervention can take place. Progress is happening, but it takes all of us to make a difference in this fight. We all have a role to play. No one person can do it themselves. It takes a village to change the world.
Mike Kraft