I have always been against lists saying what you should – or shouldn’t – say to someone with an eating disorder. Mine was manipulative enough, without trying to control what other people said.
I have been careful, as I’ve moved through my recovery, to ensure that I take responsibility for my behaviour (whilst appreciating that it was an illness); and that blame is left behind (because it doesn’t do anyone that much good).
Today I was reminded, in an email, of how harmful it can be when your treatment team say the wrong thing.
This confuses my line.
I can understand it when ‘normal people’ muddle along and put their foot in it; but people that are meant to be trained? I thought that the few negative experiences I’d had were unusual, or because eating disorders were newer, at the time, and professionals still had a lot to learn.
Like…
1. Weight gain can be hard to handle, even though it seems (to an outsider) to be a positive thing
When I was 13, the inpatient unit I was being treated in was visited by a specialist consultant. In the course of one afternoon, she managed to reduce over half the 25 patient cohort to panic and tears. Commenting to one girl that “I barely recognised you,” and another that “you need to watch that stomach”, and a third, “you’re looking far far better now”; the distress evoked by her comments was palpable, and their insensitivity, imprinted on my brain.
It took me a while to see weight gain as a positive. I find it hard, even now, to consider “looking well” to be good (IT IS, Melissa).
I appreciate that this is part of recovery and changing mindsets – but it’s a tricky area that can sometimes be misunderstood.
2. An eating disorder isn’t just bad behaviour
I am the first to admit that I was not the model of good behaviour when it came to food. I played around with what I was meant to be eating. Lied, schemed, cheated, smashed plates, had screaming fights with my family, and generally didn’t “behave.”
I was also very unwell and not really in control of what I was doing.
I think most eating disorder treatment centres are probably more tuned into the complexity of eating disorders now; but for any old schoolers who still think ‘punishments’ (no going out / no phones and the like) are helpful –
They’re not. They just make the battle worse.
3. An eating disorder isn’t something to be ashamed of – or shamed by
This is similar.
The day that the other patients – and my parents – and anyone else within earshot – were informed of the “disgusting” things that I’d done to get rid of food; my self esteem plummeted to new depths.
It took years and years to recover.
Please, if you’re a professional, don’t resort to shame.
4. Making comparisons to other patients never really helps
When I was told, at 19, that “they’d seen worse”, I went out to prove them wrong; and a few months, an emergency admission and a section later, I’d made my point.
I was, of course, the one who really suffered from making this point; but, given permission to push the eating disorder further (because I clearly had leeway), and feeling like I wasn’t quite living up to my reputation (as I evidently wasn’t ‘that bad’), the stakes were raised – and I went for bust.
I know that not all eating disorder sufferers experience this competitiveness and that it seems perverse, to an outsider, to compete over weight; but, if you’re measuring your worth in terms of how little you weigh, comparisons feed straight into a skewed head.
5. Asking for help is a big step
It takes a lot of courage to reach out for help. It involves risk (I may have to change), and exposure (I will have to be honest), and vulnerability (my secret will be shared), and acknowledgement (I am ill, and need help to get well) – and that’s before the agony of deciding whether you’re worthy of the aid.
It didn’t happen to me, but I saw what happened when people weren’t taken seriously. It got messy. And antagonistic. And hard to take the same brave step again.
6. Predicting the future is impossible
A year after I was diagnosed, I was told that I would never recover. “People like me”, apparently, “were the least likely to get well” and “the most likely to suffer extreme effects, like ripping your stomach or dying from a heart attack”.
When you’re young, what the doctor says goes. When you don’t know what’s happening to you, it’s hard to challenge someone who’s sure about what should be said.
Please don’t predict the future – or resort to threats – or pull out the scare tactics –
Because I was already terrified of what was going on in my head.
P.S….
I had a lot of treatment. Most of it was great, delivered by passionate, empathetic and caring nurses and doctors. Only some of it left scars. But they ran pretty deep.
Tags: inpatient, Living With an Eating Disorder, recovery, talking
I just wanted to say that this excellent post has given me a real insight into EDs and how crassly professionals (as well as ‘ordinary’ people) can often treat them. Thanks for all you’re doing here, Melissa – your blog is not only an education, but a sensitive and well-written account of the difficulties you’ve faced. I applaud you.
Big hugs
Pan x
Really sorry to hear that you’ve had some negative experiences from sources that are supposed to be there to help and support.
Apart from having a terrible, lazy, uncaring GP as a kid I’ve never had issues like that. It’s horrifying to think that people commit themselves to care and could end up in an even worse condition. I’d like to think that these cases are rare exceptions.
Sympathy, support and compassion are a basic necessity for any human being, never mind if they’re vulnerable and suffering from an eating disorder.
Two stories:
A doctor at Rogers Memorial (a premier ED treatment center here in the States) told me I would be dead in a year. That was in July 2008. Still here.
Weight-restored last year – A woman came up, patted my stomach and said, “I see you now have a stomach now.” I couldn’t touch a thing at the party; I wanted to crawl into a corner and die. (There was nothing wrong with my stomach, btw, it just wasn’t concave as it had been before.)
I think people need to know that these things aren’t helpful. I would add another unhelpful comment/question – “So, how much do you weigh now, anyway?” or any variation of like “You look like you weigh about 75 pounds soaking wet.”
I think this perspective will help so many people. Maybe some people really don’t understand how devastating the impact of their words can be (What can anyone be thinking to tell someone they’ll never recover?!) Glad you had some good help and not only doing well, but helping others
I think it’s also difficult if doctors/nurses judge or make comments about a patient’s well-being based on appearance. Nearly 20 years ago now, my doctor said something akin to “your weight is not that low.” I spat back, “how would you know *what* my weight is … the nurse never weighs me (because I refused, so she didn’t push it).
For months, the doctor thought my weight had remained the same as our first appointment, even though she visually saw me weekly, because that was the only number on the chart. I had lost nearly 30 pounds since then (from a weight already diagnostically anorexic), and she hadn’t even noticed? I determined that I must “carry my weight well” and that I would need to lose more weight to not look “fat” and to “be safe.” And so I did … and ended up with very regrettable complications and consequences.
Good post! I absolutely agree with what you have written. Professionals need to learn how to treat people with EDs in the right way. I’ve had a GP call my ED symptoms ’something silly’ which was so unhelpful to hear.
Take care,
Cassie x
Thank you all for sharing your experiences. I found this post so hard to write and was unsure whether to post it, but it seems to have struck a chord.
Hopefully this can help professionals understand a bit better. I have met some wonderful people who really want to help, so maybe something positive can be taken – or, at least, I’ve said a few things I needed to get off my chest.
With hindsight I regret the emphasis I put on a few ignorant words and how I let them cause effects that lasted for years – whilst those making them just got on. I know it’s hard to let go; but I suppose that I hope anyone else who experiences such comments will not take them as personally as I did and realise that they derive from ignorance – and find the encourage to let them go and move on.
I am of the view that there are a few people in the medical professionals who are probably really great at helping people with EDs; however I’ve not yet met any.
My limited experience has been that:
1) Nurses and doctors are more likely to comment on appearance (because they’re a professional and they can).
I had a nurse point out, rather cruelly and rudely, that I was overweight. I knew this (how can you not know, when it upsets you that your clothes don’t fit anymore?), but it spurred me on to extreme dieting, and then anorexic behaviours.
2) Sometimes, doctors and nurses seem very capable in the medical/scientific sense, but very incapable when it comes to relating to people, emotions and being empathetic.
When I was depressed and binge eating, I came all the way back to the UK from France to see a doctor that I could communicate with. He was dismissive and said I looked like a ‘normal sized girl – not too thin, not too fat’ and all I heard was ‘I’m fat and unimportant’. I went back to France, sucidal, and luckily came to my senses before I walked off a train platform.
Maybe I’m a little biased, given my negative experiences, but I have very limited faith in the medical profession.
On the contrary, I have had really positive experience of a local ED organisation. They were just the opposite – the precise definition of my ED didn’t matter at all; they focused on how I felt and how they can help me in making that better.