There are fundamental problems with the way in which we treat eating disorders
My experience exposed some of the issues
Last week, it was reported that average waiting times for mental health treatment for eating disorders can vary from 20 to 180 days, depending on where you live. Meanwhile, according to research by the think tank Centre Forum, almost a quarter of children and young people are being denied access to mental healthcare because the criteria for treatment are too strict.
That might seem shocking. Undoubtedly, it is. But for anyone who’s ever engaged – or attempted to engage – with eating disorder services on the NHS, these figures are just some of the many problems with treatment for these kind of illnesses.
Five years ago, I was your average 15-year-old. My interests included avoiding GCSE coursework, dying my hair colours selected specifically to piss off my mum, and religiously cutting up issues of NME to stick on my bedroom wall. Then, I got an eating disorder.
I don’t know how, I still don’t really know why. As plenty of teenage girls do, I decided to go on a diet; within a few months I’d lost about a third of my body weight (having only been about nine stone to begin with) and pretty much all of my sanity.
I could list a million reasons why having an eating disorder sucks. It’s the loneliest, most alienating experience. There were times when I didn’t think I could, or would, ever enjoy life again. But the strange thing about this kind of illness, and the reason why it’s so insidious, is that you know you’re sick – but you’re not certain that you want to get better.
This is, in my experience, the first hurdle at which eating disorder treatment falls. The first GP to notice I’d lost weight asked me about my eating habits. But people with eating disorders have often spent months, even years maintaining a facade of being normal, being fine. Saying anything to the contrary would be countering the voice in your head that has convinced you that this how you should live, and has even made you wonder how everyone else is satisfied with being so – in its own twisted terms – “unhealthy”.
So obviously, I lied. Now, I’m not saying the GP should’ve read my mind. But I am saying the onus must not lie entirely on the patient to admit that something has gone wrong. Sometimes, you just need someone to tell you yes, you really are unwell. You’re constantly debating with the demons in your head: it would be good to have someone on your side for once.
But instead, I was told to go home and gain at least 10lbs. Which is kind of like telling someone who’s scared of spiders to go and lock themselves in a room full of tarantulas. It’s not helpful, and it’s just not going to happen.
Eventually, my mum asked for help on my behalf – and this is where these shocking new waiting list figures come in. I was lucky, and I saw someone within about three weeks (although not before one psychiatrist cancelled my appointment and didn’t tell me, which obviously felt great). But clearly that’s not the case for everyone, and it’s a chronic problem endemic across mental health services.
Anyone who’s experienced mental illness will tell you it requires attention as quickly as possible. When you’re in crisis, an hour without help feels like an eternity, never mind six weeks. But even so, while mental health is as serious as someone breaking their legs, it’s treated with the same urgency as cosmetic surgery.
Every day that an eating disorder goes untreated is one more step on the patient’s downward spiral. It’s another day when they can start making themselves sick, or cut out yet another type of food, or force themselves to spend even longer in a gym they shouldn’t be anywhere near.
I know that NHS services are under immense strain. You cannot magic something out of nothing. But even a phone call with a nurse or a therapist – someone who can provide real, substantiatal help – would be better than nothing.
Because it takes so much to convince yourself you want to get better, there shouldn’t be any barriers to accessing help. And you definitely shouldn’t be promised help, only to be left in limbo – in fact, the feelings of hopelessness the waiting brings are enough to make you change your mind.
Because eating disorders catastrophically affect your self-esteem. So if qualified doctors and nurses don’t think you’re worth treating for another few weeks, or even months, why would you feel like you’re worth treating at all?
Clearly, eating disorder sufferers are being let down. But on top of the appalling waiting times, once a patient gets into treatment they’re at risk of being let down even further. I’ve already described my drastic weight loss, and by the time I entered treatment my hair was falling out, my period had stopped, my skin was covered in gross downy hair, I was constantly ice cold, and I could barely sleep, because lying down is really uncomfortable when you’ve got no padding.
On days when I cried from eating “too much”, I’d barely managed 500 calories. So it’s kind of weird that I was never formally diagnosed with any eating disorder – not even the catch-all EDNOS (Eating Disorder Not Otherwise Specified), which is no longer in use.
At my first appointment, the nurse and I talked about how I was frightened of eating in front of people, and I was upset that I couldn’t even bring myself to eat my best friend’s birthday cake. She told me I would learn that it’s okay to have a slice of cake, and I was excited. Because it sounds ridiculous, but at that point I really, genuinely didn’t know how other people were okay with eating cake.
But it never happened. And that’s because the way the NHS approaches eating disorders is fundamentally wrong. Around this time, I got trapped in a cycle of bingeing and purging, then starving myself to compensate (as opposed to just starving myself all the time). This chaotic pattern led to me gaining about 5lbs… and suddenly the treatment was gone. I was discharged. No practical solutions with a specialist nurse, just a few sessions with a psychiatrist who told me I was depressed, sent me to irrelevant group therapy sessions and, most encouragingly of all, said that I would ‘“always have a problem with food”.
If I’d still been a little bit lighter, that probably wouldn’t have happened – which is why the NHS has to stop using weight and BMI as a measure of whether someone needs treatment. Sure, I wasn’t the sickest eating disorder sufferer ever to exist, thank God. But those few pounds weren’t a magical solution – in fact, they were the result of my relationship with food, and my mental health, getting even worse. You’d never deny someone a bandage because they “weren’t bleeding enough”. So why would you turn someone away from eating disorder treatment because they’re not quite light enough to warrant help?
Since I was ill, they’ve moved the goalposts a bit – according to the NHS website, a GP will now be concerned if your BMI is under 17.5, rather than the 16 it used to be. But for me, that’s still not really enough. The dangerous behaviour patterns associated with eating disorders can be entrenched in anyone, and they should be able to be taken seriously, regardless of their weight.
Thankfully, I’m one of the very lucky people who recovered fully and relatively quickly (some suffer for decades). But my relationship with food wasn’t anywhere approaching normal for over two years after I was discharged. And you’ll probably have noticed that in this article I’ve never actually referred to having anorexia or bulimia, because the way I was treated still makes me feel like I’d be lying somehow.
I deserved better than that – and the 725,500 other people in the UK who are still suffering with an eating disorder do too.