Myth: Anorexia is Something to be Ashamed of
Since Catherine, Princess of Wales, announced that she had been diagnosed with cancer, I’ve been struck by how differently this disease is talked about compared to anorexia nervosa and other eating disorders.
Cancer is a dreadful illness, of that there can be no doubt, and it goes without saying that I wish Catherine well and hope that she makes a full and speedy recovery. There has, quite rightly, been an outpouring of support for her.
In contrast, Madi describes how her eating disorder diagnosis was noted in her medical records, with a nurse writing that Madi ‘admits to having an eating disorder’ — as if it this diagnosis, this illness, was something to be ashamed of, kept in the shadows, not talked about — and certainly not deserving of compassion or sympathy.
Why is there this huge disparity between people’s understanding of and reaction to these two illnesses?
Some types of cancer are inherited. We now know there is a definite genetic element to anorexia too — ‘we really shouldn’t be debating anymore whether genes play a role,’ says eating disorders expert Dr Cynthia Bulik. In addition, both cancer and anorexia could be described as illnesses of the cells of the body, at least in part. In cancer, the body’s cells divide uncontrollably, spreading into the surrounding tissues. We know in anorexia, from the ANGI study, that metabolism plays a role. Metabolism is the chemical reactions in the body’s cells that change food into energy. In fact, metabolism seems such an important part of the disorder that Dr Bulik suggests that anorexia should be reconceptualised as a ‘metabo-psychiatric disorder’.
It’s undeniable that cancer causes enormous suffering and pain for many individuals and their loved ones. So too does anorexia. Cancer is a killer, particularly among older people. Anorexia nervosa is also a killer, taking the life of one in five people who has it, many of them under 30.
So, what do I mean when I say these two illness are treated differently?
Well, if you are diagnosed with cancer, most would consider it bad luck, one of those things, couldn’t be helped. If you’re diagnosed with anorexia, people instantly want to know why? What happened to you? What were your parents like? What was your upbringing? Why are you behaving as you are?
It seems impossible for most people to accept that anorexia can just happen, that there doesn’t have to be a back story. Sometimes genetics or biology collide with energy deficit (deliberate or not), and that can trigger the illness. Just as the environment and someone’s personal biology can collide and trigger cancer. In anorexia, questions are always asked, as people try to tease out why someone has developed this particular illness. Yet no one ever asks someone with cancer why they grew a tumour?
If you’re diagnosed with cancer, you are often described as being ‘brave’, ‘a fighter’. It’s a ‘battle’ that you are set to win. You can talk about the rights and wrongs of describing an illness in this way, and many find it unhelpful, but contrast it with some of the words used around anorexia. Here are a just a few that I’ve come across, talking to people with the illness: ‘difficult’, ‘uncooperative’, ‘treatment resistant’, ‘attached to treatment’, ‘attention seeking’, ‘not wanting to grow up’. I’d challenge you to find someone with cancer talked about in that way, especially by professionals.
If you are diagnosed with cancer, there is a sense of urgency. Medics, indeed everyone, understand that it’s best to act fast. If you treat the illness promptly, the chances of recovery are far greater. We all know this. But few doctors, it seems, understand the importance of treating anorexia promptly.
Having witnessed the illness in both my identical twins, I believe that there is a point early in the illness when the thoughts and feelings about weight loss are there but the fear of food is not. If you catch someone at this stage, and renourish them well, it’s possible to have a short illness and move on before any damage to the brain occurs. If you don’t start this renourishment early, and allow more and more weight to be lost, fear of food and weight gain develops and neurological pathways are set. Once this has happened, it’s far harder, and much more painful, to recover — but, of course, still perfectly possible. Yet we hear time and again that people present at the GP with the symptoms of anorexia and are sent away because there isn’t any treatment available, or it’s just a phase, or their weight is not low enough. I’ve never heard anyone with cancer being told to ‘Come back when it’s reached stage 3 or 4’. Have you?
If your child is diagnosed with cancer, friends and family rally round. They fundraise for charity. They bake cakes and make casseroles. They want to support you through this difficult time. If your child develops anorexia, nobody wants to talk about it. If you try to talk to your friends (and sometimes family), you feel judged and blamed. Even when they know that you are a good parent, that you love your child, that you never talked about dieting, or good and bad foods — they still think you must have done something wrong. Because anorexia doesn’t just happen, does it? And there is no support. People change the subject when you bring it up. They stop calling. There is no fun run. There’s no fun at all.
Unless you’re really lucky, you’re left alone to deal with the tsunami of this horrific and disturbing illness. You alone have to try to help the disruptive and angry stranger who has replaced your kind, sweet child. You alone have to try to get your child to eat, often without any help from professionals. I’d describe that as a battle. It is a battle. And everyone is fighting — against each other, against the illness — fighting just to keep their heads above water.
And with anorexia, even if you do get help when your child becomes ill, you don’t have the luxury of handing them over to the professionals for treatment, like you would with an illness like cancer. With anorexia, most parents are tasked with treating their children, with Family Based Treatment (FBT) being the standard method of attack. There is much that is right with FBT, not least the emphasis on renourishment and the removal of blame from the family. FBT sees the family as the child’s best supporters rather than the cause of the illness. But that doesn’t make it the perfect treatment. And it’s not for everyone, although often there’s no alternative.
With FBT there should, of course, be professional support. But it’s not always a given that professionals understand the fundamental importance of renourishment in the treatment of the illness, and they certainly don’t always understand how vital sufficient weight gain is, with many professionals still aiming far too low. In our experience, a low target weight was given which left my daughter stuck for years. It’s bizarre when I think back on it, that we all had an expectation that my daughter would recover when she reached this magic number, which was lower than the weight she was when the anorexia first began… The logic of that is — well, it’s baffling honestly.
With cancer, most professionals agree on treatment. Chemotherapy is often used. Like weight gain in anorexia, chemotherapy can be unpleasant and distressing for the patient. But if chemotherapy is required, it isn’t up for debate whether or not the patient should have a bit of chemo, rather than the entire course, or whether they should have some therapy — to get to the root of the problem — in the hope that they’d be more receptive to the chemo later.
And with cancer caution is built into treatment. No surgeon removes most of a tumour but leaves a bit because it probably won’t make a difference. They’ll remove the tumour and some healthy tissue around it just in case. In Catherine’s case, she is having ‘preventative chemotherapy’, presumably to go over and above what’s needed, just to be sure. This should be the same in anorexia treatment. We should routinely be adding on ten per cent to expected weight to provide a cushion against relapse. After all, this is what bodies naturally do post-starvation. But far too often treatment providers are still getting someone to a just-about-acceptable BMI, or 90 per cent of where they once were, and then wondering why they keep returning to treatment. Come on, people. This is not rocket science!
We need to take an urgent and pragmatic approach with anorexia too. We need to stop being afraid of it and stop dancing around it in treatment, worrying about pushing patients too far with weight gain or making them eat when it is making them distressed. Believe me, it is far more harmful to leave them stuck in the illness for years. The damage this causes to bodies, relationships and families is incalculable.
Anorexia nervosa is an illness, just like cancer. There’s no shame or blame in either diagnosis. Humans get ill. With good treatment, they can get better.