By Bella Reed
The children’s eating disorders centre with its NHS-blue carpets, bland beige comfy chairs and assorted potted plants became a place of comfort during the first months of my daughter’s illness. There was always a box of tissues on the table, in preparation for the tears of confused, worried family members: mothers trying desperately to make sense of something that made no sense, however acrobatic their thoughts became; fathers frozen in terror as they watched their vibrant, happy children shrink and become filled with rage.
I was here with my 16-year-old daughter, having weekly meetings, secure in the knowledge that something was being done to help her. In the last few months her weight had plummeted, after she had decided to “eat healthier”, and my husband and I had watched in horror as our beloved child became increasingly fearful around food and unable to consume sufficient amounts to halt her physical decline. We knew her life was in danger and we were worried sick. Even so, it took us a while to figure out where to go for help. Our GP did not see the severity of the situation and we were offered no referral. In the end a chance phone call had brought us here. We were so grateful that we were now in the hands of the experts, and we were ready and willing to do whatever it took to get our child better.
Initially, our daughter had been given an assessment. She was weighed and measured by a doctor. We saw a dietician and two therapists. This was her treatment team, we were told. She would be under the care of these people for six months. Then they would assess the situation.
I breathed out. Everything was so well organised. These people knew what they were doing, they understood what this was all about and knew how to help.
My daughter was going to be given something called Family Based Treatment. To be honest, when I heard that my hackles raised a little. There was nothing wrong with our family. We didn’t need therapy. As I learned a little more, I realised that wasn’t quite what it was about. Family Based Treatment was mostly about us supporting our child in her eating and her recovery. And, most importantly, it was about nutrition first. In a nutshell, the idea is that a person who is malnourished will not respond to talking therapy alone because their brains are not functioning as they should. It makes total sense: if you’re starving, all the organs of your body are affected, including your brain. So in parallel to weekly sessions with a psychologist, we had to ‘re-feed’ our daughter (or re-nourish, as I prefer to call it).
We were given a meal plan to follow: three hearty meals, three substantial snacks a day. My daughter had appeared unable to hear my husband and me when we had tried to persuade her to eat. It seemed like a miracle when she seemed able—and willing—to listen to the professionals. It was hard, excruciatingly painful, for her to eat the food recommended by the meal plan. But we followed it to the letter, my daughter ate what we gave her and gradually, kicking and screaming, she began to gain weight.
We were immensely relieved to see our daughter return to us physically. And we started to have glimpses of the sweet, sassy, smart person we knew so well, the one who’d been lost as she slid further into the eating disorder. Her preoccupation with food didn’t really diminish though, and that was a worry. She remained anxious at mealtimes, often complained about the portions I gave her, the components of each meal, and seemed entirely motivated by the possibility that she could come off the meal plan as soon as she reached her target weight.
I shared these concerns with the therapist. “Just keep going,” she said.
So we kept going, my daughter reached her target weight, and the family sessions became fewer and farther between until they stopped altogether and my daughter started going on her own. Suddenly, after being involved with every aspect of our child’s recovery, we were hardly involved at all.
By then she had reached her target weight and had come off the meal plan. And while she wasn’t losing weight, she’d stopped gaining it. The worrying thing was that she remained thinner than she was before all this started, and smaller than her identical twin.
Looking back, I should have kicked up more of a fuss. Why didn’t I ask more forcefully why my daughter was allowed to hover at this low, just about acceptable, BMI? Why didn’t I insist she go back on a weight-gaining meal plan? Why didn’t I ask how she was ever going to get better if her brain was still undernourished?
Regrets, I have a few.
I suppose there wasn’t the urgency any more. My daughter was no longer dangerously ill, at least physically. Her heart was not compromised. The downy hair which had grown all over her body because it was trying desperately to keep warm had disappeared. She was alive.
But the situation was urgent. I just didn’t realise it.
My daughter was about to turn 18. And my husband and I would be comprehensively excluded from her care. There would be no more Family Based Therapy. That was over. There would be no more conversations with doctors, dieticians, psychologists or psychiatrists. We would not be there when our daughter was weighed and measured, or when her blood was taken, or when her heart was checked. We would not be involved unless she wanted us to be. She didn’t, of course. Because she was still in thrall to anorexia nervosa.
She couldn’t wait to gain her independence from us because the eating disorder part of her brain knew we were a threat to its existence. And, of course, she wanted autonomy over her body and her healthcare. On one level, she understood that she was still unwell, but she thought she could handle it. She thought she was at an acceptable weight and she could manage that. Yes, her life was still run by disordered thoughts and feelings around food, but it was her mind and her life. I think a part of her also felt that she was a burden to us, and she didn’t want to weigh us down a moment longer.
So she set us free.
But by setting us free, she kept herself in chains. The eating disorder that had taken hold of her when she was 16 and decided to “eat healthier”, was still in charge of almost every aspect of her life. In time, it would ruin friendships and destroy our family life. Four years on, it’s rare for me to even speak to my daughter. She still has anorexia.
My daughter turned 18 and moved up to adult services. She saw a therapist a few times. I have no idea what happened in those sessions. A few months later she was discharged. Her weight remained just about acceptable. The disordered thoughts had not gone away.
Anorexia nervosa is not an illness that disappears when someone puts on a bit of weight. Not typically anyway. In most cases it is a long-haul. It seems to take at least a couple of years, and a huge amount of food, for the body and brain to recover from malnutrition. And the person who has the illness will likely need to work extremely hard to fight against the entrenched behaviours that the brain has learned during the course of the illness. Six months of Family Based Treatment is not enough. And if your child happens to become an adult while they are still unwell, recovery can be stalled. In fact, I believe this is happening all the time.
There has to be a better way than this. Shutting families out from anorexia care when the patient turns 18 means that the only advocate for the person with anorexia is the person with anorexia. And, to be frank, someone with anorexia nervosa is not the best person to be in charge of their care or to know what is best for them. Many people, like my daughter, don’t realise how ill they are. They don’t understand that they need to gain weight. Often they think others could do with the help more, they’re not sick enough and they are wasting valuable resources.
Because when your brain is malnourished it doesn’t function properly.
We must find a way to keep parents involved in their child’s treatment, even when their child is no longer a child. If this isn’t possible—or wanted—we should insist that the person with anorexia nominates another adult—a sister, a partner, a friend—to advocate for them in their treatment. And we must find a way to extend the treatment until the person is truly recovered, until their brain has healed from malnutrition and their thought patterns have changed.
Anorexia patients are sent away, perhaps at too low a weight, in almost all cases without a return to their pre-anorexia mental state. It really is no mystery why people relapse because it isn’t really relapse at all. They were just never given the space—and time—to recover in the first place. This needs to change.
My advice for anyone whose child is about to come of age? Well, we got it so wrong that all I can say is don’t do what we did. Be prepared for that date coming around and do everything humanly possible to stay involved in your child’s treatment. You will likely meet resistance from all sides—your child, their treatment provider, the system—and you may find that it just isn’t realistic. But your child still needs you, even if they don’t realise it at the moment. Eighteen is not a magic number. If you are shut out of their care, try to keep the channels of communication with them open. Keep speaking to them with kindness and compassion and love. One day they may see that they probably can’t do this on their own and they’ll allow you to help them get over the line.
I remain hopeful.