Treated Differently

Samuel Brewer recounts being let down by the one-size-fits-all approach to treating many eating disorders.

You shovel down the excess food left on the plate. You go for seconds, maybe even thirds. You spend the next 15 or so in the bathroom with the shower running, head over a toilet, fingers jammed down your oesophagus. Your face and hands covered in phlegm, half digested rice, chicken, and sauce mixed with vegetables  from the butter chicken you ate earlier. Tears stream from your eyes. Snot dribbles from your nose. You’re a wreck.

For the first time today you feel good. You’re in control.

Eating disorders are mental illnesses that are particularly syntonic with the ego, that is, they align themselves with your sense of self. It makes them really difficult to deal with, and is made worse by the fact that this form of self-harm is one you take pleasure from. It makes you much less likely to seek help. There’s no orthodoxy on what to prescribe for treatment. The conditions are rarely inherited. On top of that, eating disorders are typically comorbid with other mental illnesses. From an outsider perspective, they can seem like an attitude problem as much as an illness.

An eating disorder is an illness. It is not a character trait. It is not a choice.

But sticking those two fingers down your throat is rarely about wanting to be thin. It is primarily an act of control. It’s an unhealthy coping mechanism to negotiate severely negative emotions. I’m not good enough. I’m not good enough.

I think the personality trait that my ED preys on is my competitiveness. It’s a kind of insecurity that could arise from anything, but it almost definitely has something to do with my disability. I’m blind. I’m not normal and not quite good enough. I pathologically believe that I am not good enough, and it’s not a huge jump to understand how that might form the basis for an eating disorder.

But it might not be for the reasons you expect. Eating Disorders (EDs) are surrounded by a cacophony of stigma and misinformation. The popular logic is that it’s a question of nutrition—a quick fix for weight monitoring. But to presume their relation to physical image issues is to oversimplify a complex issue.

I mean, I’m blind.  How important could my image have been to my psyche? Though I no longer purge, I still identify with my bulimia.  It’s an anxiety that isn’t easy to shake. The binging and purging are symptoms of a far deeper problem, which needs to be recognised. My eating disorder was always about control.

I was diagnosed with bulimia nervosa comorbid with chronic dysthymia. It’s a cocktail which, depending on the barman, can include things like major depression, panic disorder and generalised anxiety disorder. I spent several months as an inpatient at a clinic,  and was then treated as an outpatient for several years.

I remember sitting in my room after my first few days as an inpatient and, amid sobs, begging my parents to let me out. I don’t want to be here. I don’t belong here. Fuck you. Fuck both of you for putting me here.

I wasn’t let out. I needed to be there. Like everyone else with an eating disorder, I really needed help.

Being an inpatient comes with an aisle of good, bad, brutal, and beautiful experiences. In the facility I entered, you are watched every day. You are weighed every second day. Supervision is total. Eating times occur at three different tables with differing levels of apparent autonomy.

On every table there are labcoats meticulously taking notes of everything you eat, obsessing over every single bite you can muster. I volunteered for treatment, but if I decided that I wanted to leave before the doctors did, they could deem me a threat to myself or others and keep me on until they were sure I was better.

It’s an example of symptomatic treatment. And it is very necessary to make us physically healthy again. You can deal with the physical symptoms with rigorous supervision for a time. You can force upon us the kind of control we found in purging with institutional force. But these institutions do nothing to resolve the emotional issues that underpin all else. The system is used to fix the bodily. But as a man, and as a man with a disability, the system persistently failed me.

You’ve never known fear really till you’ve considered vomiting in a plastic bag and throwing it out the window because you know how closely he checks for any signs of puke in the toilet. No evidence. You do this for a few nights until finally someone sends a letter of complaint about someone who has been throwing their ‘leftovers’ out the window. You tried doing it in the shower, but stomping food down a drain isn’t subtle.

EDs are treated almost unanimously as a female illness. Dudes don’t have them. I asked psychiatrist Dr Lee Allen why there are far fewer reported cases of EDs in males and why even fewer seek treatment. She speculates that only now are there ‘increased pressures on guys about their appearance’, and attributes the reluctance to the fact that ‘services will not be geared towards them.’

That second half is particularly troubling. The literature on anxiety issues and using eating as a coping mechanism excludes me entirely. The National Association of Anorexia Nervosa says that 1 in 10 people with an eating disorder are males, while a study of 135 males hospitalised with an eating disorder noted that many with bulimia felt ashamed of having a stereotypically “female” disorder. This perhaps explains a bit of any delay in seeking treatment.

The dominant portrayal of eating disorders in popular culture is through female characters. While I was able to identify with characters in great books like Ibi Kaslik’s Skinny, it was never explored as a problem that affected males. It is so often treated as a “women’s disease”.

The assumptions aren’t confined to the public, or even popular culture. Over Christmas the clinic ran on skeleton staff and I was put on a default meal program because the dietician was away. I was a fourteen-year-old male put on an eating program for girls. I lost an average of a kilogram a week while in treatment. In group therapy, my eating disorder was described to me using the analogy of “Ed”, my abusive ex-boyfriend.

They were catering to 9 out of the NAAN’s 10 at the clinic. But while the inflexible treatment was unsympathetic, I slowly realised the affinity the inpatients had with each other—we were all fucked up. While the statistics, literature, and diets were alienating, these women made me feel like I was part of a family.

We had more than binging and purging in common. One friend I made as an inpatient is also blind, and our experience of ludicrous public assumptions about EDs is depressingly similar.

“How can you have one if you’re vision impaired?” we have both been asked. “That was several months ago when I was at an outpatient meeting. People just look at the disorder and think it’s about the media, and what we see visually. That can be a component. But that’s not the reason people have eating disorders. It goes far beyond the superficial. It’s control. It’s escapism. It’s a way of numbing things.”

“For the past six months I have been recovering from it and giving up behaviours. It’s been hard. You realise that it’s been such a distraction from everything. It makes things pile up emotionally… And time; EDs can be so time consuming.”

We were all battling something together.  It wasn’t man vs women, it was our fucked up family. They made me feel accepted for who I was and I felt we’d gotten to a point where we could do anything together as a family. We were there to support one another through our battles, including getting over this debilitating illness.

More than the treatment regimes, insistent observation, and therapies it was inclusion that finally helped me to develop patterns that helped me escape the destructive behaviour. The authoritarian nature of an institution makes you feel like your trust is being abused. You’re expected to be able to speak your mind in a one-on-one session, but every week you have a meeting with your ‘therapists’ and they all assess you. They assess how much longer you’ll be staying. They assess whether or not you’ve been behaving properly.

We were told to trust our group therapist, Ong Min Tan.

In his sessions, Dr Tan had us trudge across a map of coloured patterns. If we deviated from the prescribed path, he would make a loud buzzing noise and we’d have to start again. Where the system generally failed to cater for my gender, the therapies particularly failed to cater for my disability.

I remember standing in front of that mat, frightened. I couldn’t see the colours, I couldn’t tell where they were, or the pattern they would eventually make. It would be humiliating. I’d be making a fool of myself. I’d have to show everyone that I couldn’t do it. I’d feel horrible.

Instead, my comrades turned an awful trial into one of the first times that I can remember feeling loved and accepted. They lined the perimeter of the mat and, with every step I took, they’d tap pencils in the direction I had to go. In a roomful of people deemed pathologically out of control, the group gave me something like autonomy. If you can forgive the indulgence, I still well up thinking about it.

But Dr Tan wasn’t just an enabler of systematic insensitivity. Our trust was abused. In 2014 he was convicted of four counts of aggravated indecent assault. These crimes were committed against four patients under his care. In the clinic, you’re told to look at people like Dr Tan as aids. As people who will help you get better. This man would stand at the front of a room in front of us and convince us that we were helpless. He would convince us that we needed him. It didn’t feel like too far an extension of our relationship with the system already. The whole thing is built on the language of dependency and power and weakness.

Tan is a verbally dextrous man. We were admonished for criticising his methods. If his intelligence didn’t surpass all of ours, he made us feel like it did. He relished wielding the control that he had been given over vulnerable people—people he was meant to be helping. I wonder if it gave him the same feeling that purging gave me.

We would sit there, smile and nod. You wanted to get out. You wanted to be assessed positively. You’d learn to play the game of institutionalised mental health care. One of the advantages—or disadvantages—of symptomatic treatment is that you can show every outward sign of getting better without really changing.

You’ve told your partner about it, so whenever you’re in the bathroom with the shower running for too long, you walk out and see them in tears. They know, but you still lie. You lie straight to their face. It kills you but you’ve gotten used to it. Lying is easy. You wish it wasn’t that way. People know you’re lying but they’re not sure when, so you’re always taking a gamble. When they know, you really feel like shit. You shrink up on the inside. You burn with self-directed anger and a deep sadness for your partner. You’re not good enough for them, but for some reason they’re staying by you. You can’t make people you love share in your struggle. You don’t want them to. They do though, and that’s one of the things that just makes you want to scream at yourself.

You’re pushed. You push yourself into another cycle of self-loathing, and, guess what? Binging and purging are the only way to escape this state of despair. Or, at least, that’s what it feels like.

People look at EDs and think of young women and image-issues. I was a blind young man and the misunderstandings and stigmas around EDs made it all the harder to start any kind of treatment. The kindness of others brought me to understand that the issue didn’t have to be gendered, and that there was a support network for me despite my disability. They helped me begin fight against bulimia nervosa that I’m still struggling with. Now it comes as an itch I need to scratch when nothing’s been going my way. I’ll lean over the toilet and stick my fingers down my throat, maybe produce a bit of bile-laced spittle before asking myself what the fuck I’m doing and standing back up.

I received a card from the other inpatients that I will always hold on to. In my darkest times I can look at the messages  written on them and trust the kindness. Sometimes, they’re the only kind words I can believe. You can trust the ones from the dark times because they share something with you. There are always those who know what you’re feeling, and while they can be hard to find, they can share it with you, and they are looking to help you out of it. There are helping hands everywhere as long as you aren’t blind to them.

Too many of the girls who I spent time in hospital with have succumbed to their illnesses and passed away. Some of them have gotten better. But I remember the struggle we shared.

A friend asked me if I should put my name to this and risk being known as the ‘bulimic dude.’ To reduce someone to their illness, to ‘that bulimic dude’, to pathology, is a cruel reduction. It’s the kind of insensitivity that creates awful problems in the system dedicated to its treatment. While who I am is, in part, informed by my disability and my gender and my eating disorder, I am not defined by bulimia nervosa. If you are going through it now, neither are you.

Some of the thought patterns never leave you. I still look at menus in terms of what foods are best coming back up. Ice cream is cool and retains its sweetness. Bread carries stomach acid sickeningly well and tastes like pain. If you make the most of the table water, anything you’ve digested in the last two hours will out at such an explosive rate that nothing will catch, perfect for dishes like rice (but very messy).  But I’ve been to enough therapy sessions to know that these thought patterns are damaging, physically and mentally.

This is an ongoing illness and talking about it has an important function as a kind of control. It helps you get stronger. You get better at dealing with it. You get better at sharing it; you get better at shedding the load that has held you down for so long. That’s recovery. That’s strength. That’s control. And it sometimes comes in a more meaningful way than a system that fetishises symptoms, full of suspicion, abuse and assumptions can deliver. My recovery is, in a big way, the result of inclusion. That’s all I needed. It’s what everyone needs.