Having a Child with an Eating Disorder
It has been a year since my son’s diagnosis and hospitalization for anorexia, a seesaw of up and down, up and down as I struggle to increase his weight enough to bring about a brain healing, a mental turnaround I am told will break his resistance and allow him to voluntarily take part in his own recovery.
Unfortunately, at this stage, the progress he has made can only be put down to the fact that at great cost to myself and family dynamics as a whole, I have created an environment where to not eat is not a choice
Eating disorders are biologically based brain diseases with environmental triggers, something outside of the control of the sufferer and as such blameless. However the outdated and incorrect belief that mothers are to blame for their child’s eating disorder unfortunately still persists. The symptoms, often an extreme fear of eating or weight gain, can also give the impression that my son’s anorexia is a lifestyle choice, an extreme diet motivated by a vain desire to be thin.
What was the environmental trigger that flicked that switch in my child’s brain, when did anorexia begin? Maybe I will never know. However his father died when he was 10 years old, and I noticed a change in his behavior around then. My happy boy became serious, depressed and threw himself into schoolwork, spending practically all his spare time on learning, reading and homework. He was a bright academic boy and this was encouraged by his teachers, and as time went on it became a trap, in that the more he gave the more they expected. He complained of feeling different, of having nothing in common with his school friends. He took up a musical instrument, again obsessively. He played for hours every day getting very stressed if he missed a day. He had the personality trait of perfectionism that has been shown to increase the risk of developing an eating disorder. But if anorexia had arrived back then I didn’t notice.
There is, of course, the official beginning. An introduction at a once a month local support group goes along these lines. “My name is Louise” (last names are not given because we are here in secret because we are ashamed). “My son”, I struggle to utter this word. I am the only mother in the group who has a son with an eating disorder and I fear that this small word somehow means I won’t connect with the other moms. I try again. “My son was hospitalized for two weeks in July of this year with anorexia.”
Getting a diagnosis for your child’s eating disorder and treatment is an end in itself. My son had been ill for a year and a half before he was hospitalized. At first, he was diagnosed with post-viral fatigue. He struggled to attend school and all the rest in the world did not make him better. He is eating very little and only “healthy” foods. Over time his obsession with healthy eating and rejection of bad food grows and is a source of great pride to him.
Ours is a genetically thin family. I mention to doctors my son’s odd eating fears, no fats, no sugar, no meat and no salt. The answer is always the same, “he has chronic fatigue so he has a low appetite”. I know they are missing the point. This is not about appetite, my son has a fear of fattening or “unhealthy” foods, but over and over my concerns are ignored.
About three months before he collapses I start to work out what is wrong. There is a faint smell of vomit in my bathroom drain. Suddenly I see all the clues I have missed. His tiredness is from lack of food. There is always a breakfast bowl in the sink, but it is too clean, he hasn’t actually had breakfast. School lunches are in the fridge, but on closer inspection, I realize they are usually recycled. He takes an apple to school every day, but the number in the fruit bowl remains the same. I never actually see him eat lunch on the weekend, although he claims he has eaten, and he rarely eats more than half of his evening meal. I face the fact that he is more than thin, he is emaciated.
I remember as far back as five years earlier his strange fainting episodes. A visit to his doctor hours later still records low blood pressure readings. He is always cold even on hot summer days, his skin is dry and his hair no longer shiny but straw-like.
I have the “I am pretty sure you have an eating disorder” conversation. He laughs and tries to convince me I am crazy. I realize there has been no telltale weight loss that might have set my alarm bells ringing. Rather, he has grown a lot, he is now nearly six feet tall, and he has done all this growing without gaining any weight at all. His bones appear oversized with not enough flesh to cover them.
I phone an eating disorder hotline and I am told there is nothing I can do until he decides to admit to his eating disorder, however, I now know how wrong this advice was. Waiting till your child admits to an eating disorder is dangerous. Your child does not believe they are ill, they do not think they are too thin. The sooner someone gets treatment the more likely they are to make a full recovery and the less damage is caused to vital organs.
I am at his pediatrician’s office a week before his hospitalization. I tell him my son is not eating and I believe he has an eating disorder. The pediatrician takes his weight and measures him. He looks at his hands which are blue. He explains that this is poor periphery blood circulation. Although this is a symptom of anorexia he does not seem concerned. He does not seem to think my son has an eating disorder and in my heart, I know that this is because my son is a boy. Doctors are reportedly less likely to make a diagnosis of eating disorders in males due to the stereotype that persists that eating disorders are a female condition.
A few days later my son is distressed. His heart feels strange and he lies on the floor and says he is scared. He admits his eating disorder and wants help. He tries to eat food but it makes him feel worse.
I take him to accident and emergency. He is clearly unwell. He passes out and medical staff appear from every direction. He is given a referral to the eating disorder clinic which specifies he must be seen within four days. But for now, we are sent home.
When the Clinic phones a hospital bed is made available immediately. He will have 24-hour supervision and care. It is very expensive to treat eating disorder patients I am told. I am lucky he is under 18 I am told. We have no treatment available for over 18s I am told. I am rigid with fear. What will happen then?
When I see him he is clearly upset. He tells me they don’t like him because he is a boy. He tells me the person in charge asked him if he had a boyfriend. I say she probably made a mistake. Was used to asking girls that question I say. No he says adamantly. When I said no she said to me “So you’re not gay then”. Males diagnosed with an eating disorder feel shame, not only do they have a stereotypically “female” disorder, they are now assumed to be gay.
My son is not treated like a sick boy, despite being told he is one of the sickest boys they have had here. He is a mental health patient so there is no “poor fella, sorry you are sick”. Eating disorder patients are difficult they say. They are hard work, sneaky and full of tricks to sabotage treatment. They must be watched at all times.
Your child is in the same ward with children who are “legitimately” sick. I know anorexia is a serious disorder, not a choice and deadly at that, however there is an undeniable difference in how my son’s illness is seen by the staff. Pictures of sick, brave children fighting cancer line the walls of the corridors. There are no pictures of sick brave children fighting their eating disorders. I know my child did not choose to be in this state. I know his anorexia descended upon him, took control without invitation. But his disease is seen as self imposed, he is resistant to his treatment, and he is a boy.
Confined to bed and hooked up to heart monitors, now finally begins my son’s road back to health. Food is my child’s medicine and I watch as it becomes apparent that the food entering my child’s mouth brings on suffering that is unimaginable.
It is at this time that I become aware of the voice inside my child’s head and why anorexia is a mental illness. I learn that the behaviors that result from refeeding come from his tormentor’s voice. Most people name this voice “Ed”. Ed has one job only, and that job is to prevent your child from eating. Ed is paranoid, nasty, cruel and very angry. While he is in the hospital Ed’s hatred is focused on his doctor, his psychiatrist and most particularly his nutritionist, anyone who has any power over his treatment and is involved in making him eat.
After he gets home, that hatred is focused on you. Ed does not negotiate, he demands, roars, threatens and intimidates. Ed is unrelenting. If there is food Ed is there. You tell no one because you are ashamed. You have taught your child respect and manners. Ed has no respect and no manners and no love. If you were honest about your son’s behavior, his hatred towards you, people would not understand. You don’t understand. You don’t want anyone to know about the voices, you don’t want anyone to see what you see. You cannot believe he has been sent home like this.
You have to feed your child three meals and three snacks a day. You must supervise him eating and watch him for half an hour afterwards. Sometimes it takes an hour or more to get him to eat. He refuses. You stay at the table. No one leaves till he has finished. It takes all the hours in the day. Sometimes you struggle to get in the shower before midday. You have no life, no one to talk to. Your identity has gone, your happy family is no more. Your other son grieves for his lost family life, he barely recognizes his brother as the boy he knew before. I have no time left to show love for my other son. I am exhausted and lonely and sad.
Some schools, particularly private girls schools have a nurse that supervises meals for students with eating disorders. My son’s school does not. He attends only part-time for the rest of the year. The school he had done so much for before his illness has abandoned him and forgets to invite him to his end of year leaver’s celebration.
My health declines. Being berated by bully Ed all day wears me down. I am taken to the hospital several times with life-threatening nose bleeds. Other new health problems appear as well. I am constantly at the doctor. I tell my son I need him to make more effort to control his cruel behaviors, that it is making me ill, that it is killing me. Ed looks me in the eye and says simply, “Now will you stop the weight gain.”
This year my son attends school more regularly. Anxiety or tiredness negatively affects his recovery. It is not just eating that invokes anxiety, he cannot touch food either. At home all foods are eaten with cutlery, at school, there must be a wrapper or container at all times between the food and his fingers. Although a talented musician he quits his music ensembles recognizing that the pressure to succeed and perform makes him unwell. He has to be encouraged to socialize, preferring the safety of home. Ed is still rude and abusive and he dreads mealtimes. I often find parts of his school lunches and snacks hidden in his bedroom.
I enlist some of his friends to ensure he eats when at school. Recovery is slow and not the quick fix I had hoped. Sometimes when Ed is ranting and telling me how stupid I am, that there is too much food, that it is the wrong food, that I am obsessive, that I don’t know what I am doing, that he is already weight restored, that I eat too much, that I am fat, I break out in song, any song, anything to block out his words.
When did you finally realize you had an eating disorder I ask my son, and why didn’t you believe me when I told you. He tells me he didn’t believe me because he didn’t think men could get eating disorders. But you knew the signs, I say. You have friends with eating disorders, surely you made the connection. He says when I suggested it he thought I was crazy. It wasn’t till my friends started to notice, he says. When they told me I was confused, but more and more people were noticing. In the end, I realized it had to be true.
I tell very few people the truth about his eating disorder, nor does he. Those I have told rarely offer sympathy or compassion for my struggle, seeming to believe it is a silly phase, something he will grow out of. I have found community instead online, receiving and sharing information, support, love and hope with other moms who understand the ups and downs of an eating disorder recovery journey.
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This article was written by Louise McDermott, 2014
You can contact Louise through Twitter.