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.
This is all too scary!! Daughter turned 18 last week and does not want to transition to adult services. She has so much more recovery work to do. Your words are very wise.
I am so sorry it has been so hard for you. Keep hoping and I will hope for you too. Xx
Thank you and absolutely everything you said. I am reading Dr. Thomas Insel’s book _Healing – Our Path from Mental Illness to Mental Health_. He focuses on the situation in the US but in fact what he has to say applies everywhere. His book is a call to arms so to speak because the system is broken i.e. the system has failed to care for people who need, like our family members, extended care involving many parts (ie fields like nutrition, psychiatry, knowledgeable meaning precision therapy etc) for as long as it takes. This treatment must be financially covered. He calls for a case coordinator to be an automatic part of the team to integrate all the parts that need to serve our family members rather than to need to rely _solely_ on the family to keep it all together and going. Bravo to you for writing what happens when our family members turn 18.
Thank you, completely agree. I just forwarded this to boyfriend of my 21 yo.
Things are tricky when they are adults, but they cannot do it on their own.
I’m trying to do what I can in these last months she is at home, and to educate future important adults in her life. Your piece is helpful!
This is such an important article
I’m so sorry you have had this experience and so sad this is such a widespread issue. We have so much evidence in the need for support and inclusion of family in research literature out there, it is abhorrent services continue to be guided by someone with Anosognosia and who quite literally has brain damage as the result of malnutrition.
Thank you so much for sharing it with us.
This is a powerful and heartbreaking piece. I’m so sad to think of you hardly communicating with your daughter and she with you because of anorexia and the arbitrary number of 18 years old. I hope that one day she will be ready to accept the help you offer.
Why aren’t neuro-psych evaluations part of they’re evaluations as they approach the age of 18 or are already over the age of 18 to determine competency for decision making? Or is this being done and they’re just able to make all the marks needed to remain “competent” legally. This is terrifying and I’m so sorry it’s happening.Thank you for sharing your journey.
I am sad to say we are in the same situation. Thanks for writing so eloquently about this awful phase. My daughter kept going to therapy exactly one session after turning 18, and then quit. It is so difficult.
I am really sorry for your awful experiences with anorexia. My daughter also got ill at 16 and in a similar pattern to yours, gained weight initially (in hospital) and then lost it all, and more, after discharge. But our experience wasn’t quite like the same after. With constant conversations with subsequent psychiatrists and therapists, in and out of hospitals, we were able to be almost fully involved in our daughter’s treatment. We had more family based therapy and were listened to at pretty much every stage. Not that any of it actually helped.
The one time we weren’t listened to was when we requested an assessment for autism – nobody else thought that was a relevant.
We are now 10 years on, my daughter is 26 and in the last 2 years has been diagnosed with autism (we went private after exhausting hospitals and treatments on the NHS) and started to recover. She says the diagnosis was important in helping her understand herself and understand why the idea of living her life was so scary. Anorexia is there as a tool to prevent the person living their life either fully or, sadly sometimes, at all. Finding out why life seems so tough is key. Or at least it has been for my daughter. She has regained weight but is nowhere out of the woods yet.
I wish you all the luck in finding out how to help your daughter. Do not give up, keep asking professionals to keep you in the loop, keep all channels of communication open with your daughter and stay sane. Look after yourselves too.
Thanks for sharing. Here are some guiding thoughts that have been helpful for me, with the hope that they might be helpful for you:
– Know your goal (e.g., your loved gain weight, embrace recovery, seek and accept help).
– Be honest and clear with your loved one about what you want for her/him.
– Spend the great majority (99%?) of your time and energy with your loved one focused on everything else in life.
I think we need to let our adult children know we love them by letting them experience our love. They need to FEEL that our love is unconditional. Hopefully the time comes when they embrace our goals for them and they let us in to help them. If we focus always on their ED, we send the message that to us they are just sick people. Also, we wear out, and our children are apt to blame themselves for ruining our lives as well as their own.
Finally, it can be really hard to focus our time on energy on things other than the ED, especially if our children are doing really poorly. For me, the better job I do of it, the better for my loved one and the better for me. When I screw up, my goal is to model admitting my mistake and forgiving myself. Sometimes I succeed.
Thank you for sharing your thoughts. They resonte strongly though my near 16 year old son has only been in Family based therapy for 4 months. Sorry to hear your daughter and you have a strained relationship due to ED.
I hope for recovery for them both and all the other families on here.
Thank you for writing this. In the area of the UK we live in, children with eating disorders are moved over to adult services at 16.
From my daughters point of view the change in thresholds has been very confusing. Her weight is much lower now than it ever has been but is hovering just grams above hospitalisation, under children’s services she was repeatedly hospitalised at a higher weight than this and it’s hard for her to understand how dangerous this weight is.
Throughout all eating disorder treatment I think the voices of parents and family should be more highly valued as they are the constant in the patient’s life, they know them best and are there when the medics aren’t, they need to be part of the team just as much as the professionals.
Bella, thank you for sharing your story. My daughter was diagnosed as a young adult. The past nine years have been one heart ache after another. Like you, I believe that shutting caring family out of decisions when ED is in charge, is morally unjustifiable. It is in no one’s best interest, well, except ED’s of course. My best wishes for your daughter and for you.
Some UK services have reorganized to have an ‘all age’ service. I see on a therapists’ forum how others ask them about it, and the answer is always about how good it is. It works well. It means there’s all kinds of therapies available to suit the needs of each person, irrespective of age.
So it is terribly frustrating how all the same, most services remain separate with a cutoff at age 18, and in some places, even as young as 16.
I look forward to seeing more on TBT-S: Temperament-based therapy with Supports. I think a manual is coming out any time now. The idea is very much to use ‘support’ people in people’s lives, whatever their age.
This sounds just like our experience. Our daughter is 18 and on the brink of going down into another episode – her weight has dropped, she has terrible anxiety and she still denies ever having anorexia. Thankfully she still loves st home but I am so fearful of going back down that awful pathway that we are all trying to recover from. My heart goes out to you – this is such a hard journey for our children and for us as parents xx
Thank you so much for sharing this. This is a stark warning to all of us with children under 18. I don’t know what the answer is but getting stories like yours out there and raising awareness can only help. I wish you and your family all the best.
The medical community is letting us all down – and our adult children more than any. They tell us overtly that EDs change the brain to the point where the person is not making appropriate decisions yet they then turn around and tell us that the person can make their own treatment choices simply b/c they are over 18 and an “adult”. If that’s not crazy, I don’t know what is. Yet, the outpatient teams continue to take appointments and bill for the services despite telling us the person needs a higher level of care. What is ethical about that?