For the past two years I have been in a position I could never in a million years have foreseen. I am the mother of a teenager who has been diagnosed with anorexia. She is now thrashing about uncomfortably in recovery. It is a recovery that was forced upon her, and is in no way voluntary or cooperative.
It is, quite easily the most terrifying path I have ever wandered aimlessly down. And yet outsiders have no insight into what we live with. I’ve heard some unbelievably insensitive, uninformed, and blatantly stupid things in the past two years, and for that reason I’m writing a list of WHAT NOT TO SAY TO AN ED (Eating Disorder) MOTHER.
I have, for this article, chosen to write about girls with eating disorders. I have done this for two reasons. The first is that the majority of eating disorders present in girls and women. The second is that most writing assumes a masculine by default position, and this website does the opposite. Please, as you read, be mindful that some mothers are supporting SONS with eating disorders, and they face the same, terrifying, isolated battle. If you are the mother of a son, or adult child, who has an eating disorder, please see the postscript at the end of this article.
- Don’t say SHE LOOKS HEALTHY ENOUGH: You’d be surprised by how well the body maintains the appearance of health under starvation conditions. Astonished perhaps. A teenager might not have her period for six months and still look healthy. They might not have bones poking out, but still be dangerously lacking in nutrition. People with eating disorders have internal organs that work double time to sustain life, their hearts are just one example of an organ that can be in serious trouble, without ever showing a single visable sign that they are desperately unwell.
- Don’t say AT LEAST SHE’S EATING: Sometimes an outsider will see an ED child eating and take it upon themselves to tell the mother of said child, that their child is eating, so “it’s all ok!” Trust me when I say that nothing could be further from the truth. Your words are invalidating and triggering. Firstly, the nature of an eating disorder is extremely deceptive. This means that ED sufferers do things to hide the ways they eat – or don’t eat. These include (but are in NO way limited t0) pushing food around their plate so it looks like they ate, making countless excuses as to why they can’t eat (I’ve just eaten, I don’t feel well, I’m not hungry, I’m allergic / intolerant to that et. al) they may cause themselves to vomit after eating, or use laxatives to purge their body of anything they consumed. Trust me when I say that there is no end to the ways in which a person with an eating disorder can deceive those around them. This is especially true for those who are unfamiliar with this style, and extent of duplicity. This is NOT to suggest that kids with ED are evil (please see next point) but it does highlight one particular aspect of the illness. Secondly, some kids with ED eat such a restricted diet that they are malnourished. They have such a short list of foods that they deem “safe”. They are literally starving …. despite eating. We all know how dangerous a fad diet can be. Try and imagine combining a fad diet with a mental illness and multiplying it by about a thousand and twenty. Then you might have some inkling of what an ED mother manages. You can eat, and have an ED. And just for the people down the back YOU CAN EAT AND STILL HAVE AN ED. People with eating disorders eat food. People who don’t eat food die really fast. People with eating disorders die too, they just do it more slowly and whilst the people looking on from the outside, discuss their eating patterns.
- Don’t say I WISH I COULD GET A BIT OF EATING DISORDER: Really? You REALLY wish that!? You wish you could somehow “catch” a mental illness? You want to develop the mental illness that has the highest death rate of all mental illnesses? If so, you need therapy. If no …. perspective is everything isn’t it. No one who has half a clue wants that. Lots of people want to lose some weight, but that’s a cultural symptom of the mythology of “thin”. The idea that developing, or fostering an eating disorder in order to do it, is probably symptomatic of a sick society. Unless you want your internal organs to shut down, osteoporosis, failing fertility, impotence (if you’re male) lack of libido (for both sexes) hair loss, voices in your head (yes, some ED sufferers get that, like schizophrenia) dental decay, painful dry skin, headaches, poor circulation / Reynaud’s syndrome, hypotension, abdominal pain, constipation, oedema, fainting, low blood pressure, stunted growth, bruising easily, endocrine disorders, lanugo (excess hair growth) and many many more, then it’s safe to say YOU REALLY DON’T WANT AN EATING DISORDER. You really really don’t want an ED. You just have an unrealistic, romanticised idea about the severity of ED, and the recovery process. The mother of the child with the ED does not share your illusion, nor does she find your flippant remarks helpful.
- Don’t say I THINK MY KID HAS AN EATING DISORDER TOO: Especially don’t follow that statement with laughter. It’s not a joke. It’s not a lighthearted topic of discussion. If your kid has an ED you’ll know about it. But here’s another complicated but factual wake up call: If your kid actually has an ED, it’s highly unlikely that you will know about it until it’s too late. A real eating disorder is deceptive. The odds are really good that you won’t know about it until your child is beyond the realms of safety – I know this from experience. Lots of kids are fussy eaters. Lots eat slowly. Lots eat less than their parents would like them to eat. As frustrating as that is, it is in no way, NO WAY, even remotely comparable to an actual eating disorder. Of course if you actually think your kid has an ED, it’s good to talk about it, but before you raise it, research normal eating in children. Normal kids have really weird eating habits, Eating disorders are more than weird eating habits. If you’re worried yours is displaying signs of an ED, you won’t be laughing when you raise the topic.
- Don’t say IT’S NOTHING A TRIP TO MC DONALDS WON’T FIX: Yeah it is!?!? It’s totally 100% something a fast food joint can’t cure. People wouldn’t die of eating disorders if it was that simple would they? It may or may not shock you to hear this, but fast food has never been linked to improving health. That includes curing eating disorders. People with eating disorders are desperate to avoid gaining weight, and you’d have to have been living on a desert island for the past fifty years to not link fast food restaurants with weight gain. But it gets more complicated than that. Not all ED is about avoiding weight gain. An enormous part of it is about “being healthy”. So once again a trip to maccas won’t “fix it”. And still, it goes even deeper than that. Eating disorders aren’t physical illnesses. An ED is a mental illness. Not just any old mental illness. EDs are the mental illness associated with the highest death rate of all mental illnesses. Google it if you don’t believe me. Eating disorders have a multitude of physical manifestations – as mentioned above, but their root is in mental health, not eating. So burgers won’t cure anything. In fact if burgers could cure eating disorders, , maccas would be onto one hell of a sales pitch …. and yet I’ve never heard a peep from them. Have you?
Very few people understand the depth, magnitude, or complex nature of eating disorders, let alone the plight of mothers who are caring for daughters with an ED. Many are critical of mothers whose daughters develop anorexia, bulimia, orthorexia, or any other disordered eating pattern or illness. Everyone seems to enjoy pointing the finger at a grieving, stressed, mother who is up against the odds. It’s easy to criticise from the outside isn’t it. What isn’t easy, is to know what to say or do. Knowing how to help, and validate. Knowing what to DO to support a mother as she fights for her child’s life. And make no mistake about it, it’s a fight, a long, protracted fight between life and death.
I am the mother of a child lost at birth. People pay homage to that, assuming they can overcome their social clumsiness. But few people can sit with the mother of a child with an eating disorder. I know because the past two years has proved this beyond a shadow of a doubt.
All families are different, all mothers are different, all eating disorders manifest differently. So you need to use your knowledge of the family concerned to know what to do. Most importantly, you need to use your empathy, to know what do say. If you don’t know what to say, say nothing. Just listen.
The list above is a list of things that each and every mother caring for someone with an ED will hear more than once. Battling an eating disorder can take years, there’s no on / off switch. So take a step back and be the person who listens. You have a choice here. You can be, and are highly likely to be, the one person that listens. Or you can be one of the thousands who perpetuate the invalidation and loneliness that mothers with eating disordered children may endure for years.
If you are the mother of a male child, or an adult child with an eating disorder, please consider writing your story and sharing it here. We are always on the lookout for stories that will raise awareness of issues that impact mothers and their children, or women. Your stories can be published anonymously and your identity protection is a priority to us here at Whole Woman.
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