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I was hospitalized for my eating disorder. Here's what Netflix shows get right and wrong about it.

 
BEE JOHNSON   |   Special to the Times
BEE JOHNSON | Special to the Times
Published Sept. 21, 2018

It took me a year and a half to watch Netflix's To the Bone.

The movie, which debuted in January 2017, portrays Ellen, a 20-year-old woman battling anorexia nervosa, and her experience being in and out of various treatment programs.

When it was first released, I was 23, very fresh in my recovery and triggered by nearly everything. But I wanted to watch it. I wanted to be a part of the conversation around my disorder, to know what others were seeing, and how they may have been perceiving my experience.

I put on the movie, and in the first ten minutes, I cried and turned it off.

Ellen's experiences were still too raw for me: counting the calories and analyzing the nutritional components of every morsel of food that touches your plate, going out of your way to exercise more, even after your body has told you it has had enough.

I wasn't ready to confront the reality of my own experience. I was just over two months out of the hospital and not able to make sense of it all yet.

• • •

My story started as an innocent attempt to be "healthier," a way to combat my depression.

Growing up, I always had an inexplicable fear of eating in front of others. This fear became more prominent in high school, to the point where I would throw away my lunch when my friends were done eating, and if someone at another table looked at me while I was eating, I would put my sandwich down. It was as if I was caught red-handed in an illegal act; I quickly threw down the evidence, as if I had never touched it at all.

When I went away to college at 18, being away from home for the first time took a larger toll on me than I expected. My fear of eating in front of others and around people I wasn't comfortable with, combined with my debilitating fear of the dreaded "freshman 15" weight gain, frequently resulted in me eating little to nothing at all. However, I was boxing three times a week, not factoring in my body's desperate need to make up the calories I was losing.

Though I eventually gained back the weight, my perception of my body and my attitude around food never truly recovered. Restriction and excessive exercise were habits I would return to in periods of extreme stress. It felt like I had some semblance of control in an environment where there were so many uncertainties.

At the end of my junior year, I dedicated myself more heavily to my fitness routine. I picked up a new workout plan that I followed five days a week. On top of that, I was attending boxing classes and riding my bike on Bayshore Boulevard any chance I had.

I was taking 18 credit hours at the University of Tampa while working a 40-hour week, but exercising quickly became a a chore I could not miss.

Each compliment about my shrinking body fueled my desire to be smaller, but left me feeling emptier than ever.

After a few weeks, friends' comments went from complimentary to concern. The rapid weight loss was causing me severe anxiety. It was June in South Florida, but I was cold all of the time.

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I drove myself to the hospital one afternoon — to prove to my mom I didn't need to be there.

I was admitted to the ICU immediately.

My weight was in the double digits, my heart rate in the high 30s. My body was feeding off my organs and waste it refused to release.

Once I was stabilized, I was discharged against the wishes of the hospital psychologist.

The university required a waiver to release them of any liability prior to me returning to campus. Three weeks into the semester, I no longer had the strength to walk to my classes.

I was admitted to the ICU at 5 feet 7 and 86 pounds.

My first night, I slept with six covers, and a heating blanket set to 114 degrees. I lashed out, angry that I was being forced into recovery when I didn't feel ready. Days later, I was still losing weight. Doctors inserted a feeding tube in my nose.

It had to be taken out and re-inserted two times after coiling in my stomach.

I stopped waking up to have my blood taken, instead robotically lifting my arms, letting the nurses take whatever they wanted, poking whatever vein they haven't gotten to yet.

• • •

Disordered eating and distorted bodies are all around us in the culture. We see it on our Instagram feeds, in magazines, on the clothing racks at our favorite stores.

Netflix released a show called Insatiable in August. In it, an overweight, bullied woman skips meals and obsessively counts steps. After a fight, her jaw is wired shut and she loses weight. She suddenly has the attention she craved from boys, and to her, her problems are all solved.

When To the Bone was first released, I was determined to be a part of the conversation, but was not yet stable enough in my recovery to watch the main character using disordered behaviors like counting calories, excessive exercise and resisting treatment.

I was worried for Collins. The actress, 29, has openly talked about suffering from an eating disorder in the past. Now, she was losing weight for the film to play an anorexic patient, Ellen. Would this not trigger the mental side of the disorder? I thought it cruel to put her back in that negative space. I wondered if she would return to her regular weight after the film, and if she would be okay with gaining that weight back.

I cried when I first watched the trailer for the film. I thought of all the behaviors I used in the past and how hard I tried to hide them. Even as I was on bed rest in the hospital, I was still using them: trying to convince the doctors to turn off or slow down my feeding tube; telling doctors I only walked three laps around the hospital floor, when I was doing much more; peeking at the scale when they weighed me; trying to hide parts of my dinner when they left my room.

Given the platform Netflix has, there is great opportunity to start a conversation about treatment available to eating-disorder patients.

Here's the truth.

First, treatment is not readily and widely available. If it is accessible, it is extremely expensive.

We were told in-patient treatment at a private Florida facility that would address my underlying mental health, monitor me around the clock and provide meals would be $33,000 for one month. Insurance would not cover in-patient care in any respect. After being denied inpatient, I went to intensive outpatient care, three times a week for $750 a week.

My mom first started calling treatment centers in 2014 after I had lost 30 pounds during my first few months of college. Treatment center after treatment center calculated that my weight was within a "normal" range. But what about my mindset? Their chart didn't factor my intense fear of food, avoiding social situations in which I may consume extra calories, isolating myself from friends and family, skipping school and work so I could spend more time in the gym, or my intense anxiety surrounding mealtimes. My weight was not low enough to qualify for treatment, so my admittance was denied.

My mom called for treatment again in summer 2016. I was less than 100 pounds. During an intake test for the treatment center, I talked about my behaviors and my mindset around food and exercise. The call lasted two hours. I was denied entrance to the treatment center, because they determined my weight was too low. I would be a liability for them to take me as a patient.

No treatment center would accept me. My mom begged our insurance company to make an exception to cover my treatment, as it was a matter of life-or-death. My mom said it was so frustrating for her battling with treatment centers and the insurance company.

She carried most of the fight, as I was living in a shell, unbothered whether I lived or died. Depression had washed me out.

Insurance did kick in when my physical health was in danger. One week in intensive care at Tampa General Hospital and five weeks of treatment at a medical behavioral unit cost insurance approximately $500,000. Insurance had to pay for CT scans, ultrasounds, X-rays, and various other tests and medications while I was in the hospital.

• • •

From my perspective, here are some things people don't understand about eating disorders, some of which To the Bone gets right.

People don't know how to confront the sufferer.

In To the Bone, Ellen's stepmom is upset seeing her body and the number on the scale. She takes a picture of her body, asking her if she thinks it's beautiful. Her sister says, "I don't get it. Just eat." My mom had trouble understanding what I was going through in the beginning, like most people. "Just eat" is not a viable solution. In the mind of the sufferer, they are never "sick enough" or "skinny enough." I didn't see myself as skinny or fat, I really didn't see myself at all.

The sufferer doesn't comprehend the seriousness of the problem.

Ellen's stepmom asks, "Are you proud of yourself?" "I'm maintaining," she says. Even if you're maintaining your body weight, you cannot see the damage to your organs and the nutrients you may be missing, like electrolytes and potassium. Doctors told me that my organs began feeding off themselves, because my body didn't trust me to provide nutrients.

Parents and caretakers feel guilt.

Most likely, an eating disorder cannot be attributed to one problem or cause, but likely a series of influences that accumulated overtime. Parents often feel guilt, which we see in To the Bone. This is how my mom felt.

It's isolating.

The sufferer will often avoid social situations that involve food and alcohol to stick to their strict food rules, and as a result will spend a lot of time alone. Depression and anxiety can also lead to avoiding outings.

Eating disorders don't discriminate.

In Ellen's treatment center there was a man, a woman of color, a young girl, and a pregnant woman. The National Eating Disorder Association cautions that associating eating disorders primarily with young, straight white women often leads to fewer diagnosis and treatment options for other patients.

Talking about food and numbers is triggering.

In treatment, patients aren't allowed to discuss food, weight or numbers with each other and parents and doctors are encouraged to avoid this type of talk as well. In To the Bone, Ellen sent another patient into a panic when she told her how many calories were in each bag of her feeding tube. When I had my feeding tube, another patient said, "Damn, they're really feeding you, huh?" And from that point on I would "forget" to re-plug my feeding tube after going to the bathroom.

Restricting food messes with your body.

After an extended time of restriction, you can lose your period. You can start to grow extra hair on your body as your body's attempt to keep warm. After your body has fed off the fat tissue, it will feed off muscle, then organ tissue.

Sufferers may have "food rules."

The sufferer might have a strict set of rules surrounding what they will or will not eat, the times they will or will not eat, who they will eat with, where and how.

The fear of weight gain is real.

When I was first recovering, I was scared that once I started taking in food again, I wouldn't be able to stop. This was not the case. My body would crave things it was missing. I wondered why I wanted peanut butter so badly and so often, and my dietitian told me our brains are mostly composed of fats, and my body was telling me that's what it desperately needed in order to heal.

You can't force someone into treatment.

If someone is not ready to accept recovery, then treatment will only be 30 days, their electrolytes and nutrient levels will be stabilized, and most likely they will return home and revert back to old habits. The first time I went to the hospital, I was not at all interested in recovery. I was angry with my doctors and my mom and wanted to be home and on my own.

What you can do is be a friend, be patient, listen, try to understand. And if you can't listen with empathy, ask what you can do to help.

• • •

The day my nurses told me I could shower, I felt so excited. It had been weeks of buckets of water, bar soap and wet wipes. Then, I immediately felt shame. My mom choked back tears when she saw my body. I needed help in the shower, because I was still too weak to stand on my own. My mom gently moved the washcloth over my body, just barely touching my skin, because she was so afraid to hurt me.

Before I could be discharged, I was transferred to the psych floor to receive treatment for my depression. I received eight hours of group therapy a day for a week.

The first step out of the hospital after six weeks felt like being released from prison. I couldn't wait to throw away the clothes the hospital had given me. My mom took me to Walmart, because none of the clothes I had at home would fit. As I walked, I felt my underwear sliding down my once full backside, inside my pant leg. We bought T-shirts from the boys section, and underwear from the girls section.

I was released just a few days before Halloween. I was determined to return to normalcy, but terrified of what my classmates and co-workers might say about my absence.

I met with all of my professors to ensure that I was caught up and on track to graduate in December. I started one class at a time and felt immense pride when I received A's on my finals. I made the dean's list that semester.

Because of my anxiety, I had never intended to walk at graduation. However, after achieving what no one except my mom believed I would, I was hellbent on getting across that stage. That was our walk.

I could say with full certainty I would not be alive today if it wasn't for my incredible and patient team of doctors who took on my case, my mom's unwavering dedication and my friends who stuck by me, regardless of how many times my disorder urged them to go. I had my school books in the hospital. I wrote out my assignments by hand, and my mom emailed them to my professors. School was one of the main things that kept up my will to fight.

To this day, I am actively working on my recovery. Though sometimes I still struggle, I have a wonderful support system and have learned invaluable coping mechanisms to utilize in times of stress.

Movies and shows that discuss eating disorders and the struggles sufferers encounter can be a step in the right direction to educating the public, get people talking and hopefully, in turn, encourage people to fight for more resources for this deadly disease.

Insatiable faced a backlash for its problematic themes. I don't think the show intended to do harm. It was an attempt at satire that fell short by perpetuating age-old stereotypes, rather than taking a different stance or message.

What's missing from many shows and movies that tackle the topic is the provision of resources that are available, and explanation of resources that are not.To The Bone comes with a disclaimer, that the movie was "created by and with individuals who have struggled with eating disorders, and it includes realistic depictions that may be challenging for some viewers."

We have a long way to go in the fight for medical care and to ensure sufferers are able to receive the same life-saving treatment I did.

Brianna Kwasnik is a former Tampa Bay Times staff writer who now works in California as a freelance writer. Contact her at briannakwasnik@gmail.com.