What Parents Say, and Why

It must be hard, if you’re treating young people with anorexia nervosa, to see things from a parent’s point of view.

You’re faced with a child or adolescent who is seemingly refusing to eat, who is sullen and frail and often appears uncooperative. It’s undeniably an extremely difficult job. But, let’s face it, if they’re an outpatient you only have them for one, maybe two, hours a week, and if they’re an inpatient, you only see them when you’re on your shift.

Imagine that you’re living with that person seven days a week, 24 hours a day. Imagine that this person, whom you love more than anyone in the world, has become almost unrecognisable from the person they were before anorexia arrived.

Now imagine that you have been given the responsibility of saving their life by somehow getting them to do the thing that they’re most terrified of — eat.

Here are a few of the things that parents say when faced with the horror of anorexia, and why they say them:

‘I’m scared’

Parents of children with anorexia normally arrive at the doctor’s feeling anxious and frightened. In the past this was often used as a way of explaining their children’s condition: the mother was neurotic and so this had, in some way, caused a very peculiar reaction in her child. Quite the leap of logic but that’s for another post…

Of course, to feel anxious and frightened is a perfectly normal reaction to your child becoming unwell with an unfathomable, life-threatening illness. It doesn’t mean that the parents of a child with anorexia are inherently anxious or fearful people. It is the most normal, most human response to the extreme situation in which they find themselves, one which many, for good reason, liken to being in a war zone.

Sometimes I think we have become so inured to the idea of anorexia nervosa that we forget what it actually is: the loss of the ability to do something that is essential for life.

Now, let’s imagine that it was something else that was essential to life, like breathing.

If a parent turned up at your door saying that their child couldn’t breathe, would you be surprised or judgemental if they were anxious and frightened? Would you conclude that they were over-reacting or worrying unnecessarily? Would you send them away without offering immediate help?

Of course you wouldn’t. You would treat it like the emergency that it is.

‘I feel like I’ve walked on to the set of The Exorcist’

This is something you commonly hear from a parent whose child has developed anorexia. And there is a reason why many parents say this — it’s true.

This is not hyperbole. It’s not an exaggeration. It is often the most accurate description of what anorexia is like.

I am not a huge fan of demonic metaphors when it comes to eating disorders. There’s far too much medieval thinking already when it comes to this illness. But when your child develops anorexia, honestly it can feel exactly like your child has been possessed by a demon that’s escaped from Hell.

Your once kind and peaceful offspring will scream and shout and rage when you try to get them to eat. They will throw plates, break furniture, run away, try to hurt themself or you — anything to avoid the simple act of sitting down and eating. The overwhelming fear of food will cause them to behave like a cornered animal because something deep inside their brain is malfunctioning, and it is giving them the message that food will do them harm.

And this explosion of terror doesn’t just happen once. If only. No. It happens multiple times a day. Every day. For months. Sometimes for years.

Day in day out. Over and over and over. For what feels like forever.

This is utterly bewildering for parents. Most have developed strategies to deal with their children’s bad behaviour. But someone experiencing the primeval rage of anorexia won’t respond to the normal threats, reprimands or pleas. All reason is lost and all reasoning is futile.

When a child is born, most parents are shocked by the sudden realisation of the enormity of what they’ve taken on. But still they are prepared to tackle almost anything because their love is more powerful than anything else. I’ll be honest, though, when I had my children, I did not think I would have to become Buffy the vampire slayer one day. Well, let me tell you, re-nourishing your child often feels exactly like that.

Only this is real, and the stakes (no pun intended) are far, far higher.

‘I don’t recognise my child’

One of the greatest sadnesses for me when my child developed anorexia was that the child I knew seemed to disappear almost overnight. The beautiful, kind soul that was my daughter was suddenly replaced by an angry, aggressive, disruptive, confused stranger. She looked like my child, albeit a thinner version of her, but the person I knew was almost entirely absent. I knew my sweet, loving child was still in there somewhere, but whatever I tried I couldn’t reach her; I couldn’t get her back.

It was immensely frustrating, then, to sit in the therapist’s office and try to explain that this was not the child I knew. This angry, uncooperative, frankly pretty unpleasant person was not who she really was.

I never felt that they believed me, and that was demoralising to say the least. I felt judged for having a child who was completely out of control, who had no respect for the adults who were trying to help her, who was sullen and difficult and unkind.

I wanted my child back, but if the people treating her couldn’t understand that she was lost, how would they be able to find her?

Please believe parents. We know our children.

‘I’ve lost my life’

Most parents will gladly sacrifice pretty much anything to save their child.

That doesn’t make it easy, and helping a child to recover from anorexia often takes an enormous emotional, and financial, toll. Many parents, often mothers, have to give up work to help their child recover from anorexia because this is a full-time job (and the rest).

For many in the UK this is simply impossible because they can’t survive the loss of income. They have to muddle through as best they can, which means that there is a serious inequality in care depending on your family’s financial position.

Helping a child in recovery, particularly doing family based treatment (FBT) takes every ounce of strength that that you have, and you have to be resilient. A parent will have to provide all meals and snacks, often based on a rigid meal plan, sit with a child while they eat, find strategies to make that easier like distraction, and support their child through the post-mealtime distress, which can be incredibly emotionally overwhelming. My daughter would throw open every window in the house and lie on the floor howling uncontrollably like a wounded animal after every meal. Again, nothing I could do or say made any difference. We just had to get through it.

Day in day out. Over and over and over. For what felt like forever.

And while all this is going on, the parent’s life is put on hold. Their career is disrupted. Their social life disappears. The anorexia often takes over every corner of their world until it feels like there’s no fun left at all. That’s what this illness does. It’s not satisfied until it’s spread its darkness into every corner of existence.

Parents will do it all, of course, because they love their child and they desperately want to help them find their way back to the light. But it is really, really hard. It’s wearying, and it’s isolating, often because it feels like nobody else understands just how incredibly difficult it is — including treatment providers.

And while you’re dealing with the practicalities and emotional drain of it all, you’re still coping with the terror, of course. That hasn’t gone away. You feel the enormity of the task you’ve been given.

‘I feel burnt out’

Of course, after weeks, months or years of supporting a child with anorexia, parents become tired. They become exhausted. They get burnt out.

And this is when the situation can become dangerous. It is really, really important that clinicians understand this and help them to push through the exhaustion and keep going.

It happened to me. After months of meal plans, preparing three snacks and three meals every day and making sure my daughter ate them, after dealing with all the outbursts and the tears and the rage, day in day out, suddenly my daughter’s behaviour worsened dramatically.

My daughter had steadily gained weight and no longer looked unwell. She was nearing the target weight set by her treatment team (which I now understand was too low). And she suddenly entered a state of panic. Her distress was enormous, her reaction to having to eat anything containing fat was off the charts. She started to accuse me of treating her like a child. She started to blame me for everything. The anorexia made her manipulative, and she learned how to push all my buttons.

And I started to feel like I was the one who needed therapy. I wasn’t coping. It was all too much.

I talked about the situation with her therapist, and she said that perhaps it was time for my daughter to be in charge of her own meal prep. “You don’t want to ruin your relationship with her,” she said. She was nearly 18, after all. Perhaps it was time to stop infantilising her and let her make her own decisions around food.

I knew deep down that this was wrong. Very wrong. That my daughter wasn’t ready to take charge of her own decisions around food. She was still very much in the grip of anorexia, that was clear. But my tank was empty. And I trusted that her treatment team knew what they were doing.

Seven years on, I still rue that decision.

I believe if we had kept going through this we would have come out the other side. But we weren’t supported to do so. Clinicians must be aware that there are chinks in a parent’s armour after months of battling anorexia. And when they are worn out, it’s the clinicians responsibility to give them a pep talk and tell them to keep going — not to listen to the anorexia.

I now believe that we were excruciatingly close to the finish line. Some people talk about an ‘extinction burst’ in anorexia nervosa — a sudden increase in the frequency, intensity, or duration of an organism’s behavior just before it extinguishes. In anorexia nervosa, this often seems to occur when recovery is just around the corner.

Things scream loudest when they’re dying. This is when you need to summon every ounce of parent power and keep fighting. And parents must be supported through this.