When your child says “I hate you” remember that’s their eating disorder voice
You are a “good enough” parent. Remember this. Twelve years after launching a blog to raise awareness of eating disorders, your stories continue to shine brightly on the dark crevices where the eating disorder hides. Your stories help us to help each other. Recently, a mother emailed from Europe. She had read a 2019 post on The Diary Healer blog, by Dr Richard Kreipe in the United States. This mother was worried about her daughter who has anorexia nervosa and that blog resonated strongly with her. I connected this mother with Dr Kreipe. Such is the power of stories that within 24 hours a small support network was operating across three continents. Today, Dr Kreipe shares a story to give hope to the mother, and to parents everywhere.
June Alexander (The Diary Healer)
Dr Richard Kreipe
Let me tell a story — true, as are all of my stories.
Bridget was an adorable 13-year-old little girl — not yet into puberty — who developed restrictive anorexia nervosa. She was admitted to a psychiatric hospital in Syracuse, New York, about 70 miles to the east of Rochester, that had an eating disorder program, with a lower age limit of 13, but they had little experience with pre-pubertal girls. They also had a policy of not placing a nasal gastric (NG) tube without a patient’s consent. So, being VERY smart, Bridget quickly realized that all she had to do was to refuse to eat and the treatment team would be powerless because she also refused to consent to NG tube feeding.
I don’t know if you have read the book Catch-22 by Joseph Heller, but the title comes from a war-time policy cornering a person into a no-win corner, a “Catch-22” situation. Bridget knew that she had the staff at the hospital and her parents in a Catch-22, and there was nothing that anyone could do about it. Her eating disorder (ED) loved it—because it gave ED all the power in the world!
The parents and the staff realized that they couldn’t just watch Bridget starve to death — especially in the hospital — but felt powerless to do anything about it. And the parents very sensibly refused to take her home, because even worse than having her starve to death in the hospital would have been to starve to death at home! So, there was a mutual agreement to discharge Bridget from the hospital in Syracuse, but then have the parents drive directly to Rochester to be admitted directly to my service on the inpatient Adolescent Medicine Unit in Pediatrics (not psychiatry) at the University of Rochester Medical Center.
However, I instructed the parents to not tell Bridget that she was coming to the hospital to be admitted, but that they were bringing her to see me, a pediatrician who took care of young people her age to see if I might be able to help. Very important point: I NEVER tell parents, or anyone, to lie. However, there are partial truths — and it was true that I was a pediatrician who took care of young people Bridget’s age and I was willing to see if I might be able to help. No need to talk about the NG tube, because that would have given her something to fight. Just that I was willing to try to see if I could help — 100 per cent accurate.
When Bridget and her parents arrived, I focused on telling Bridget about me and about adolescent medicine and how pediatricians are interested in helping children grow into adults. I asked her what she thought she wanted to be when she grew up. Asked her what she was good at, and what she was most proud of, and how she would use her strengths and positive qualities to their best use as she became the best adult she could become. I also heard from her parents about them and about their thoughts about Bridget’s special qualities, things that they were proud of, hopes and dreams for her future.
“You can’t make me drink or eat anything”
I said to Bridget, “I hear from the doctors and nurses in Syracuse and from your parents that you have refused to eat or drink enough to keep you healthy.” She challenged me, protesting “I AM eating!” When I asked her to tell me more, she described the celery stalk, half-piece of thin-slice dry toast, and the single egg-white omelette (made on non-stick pan with no cooking spray), and how she also drank four ounces (125 ml) of unsweetened almond milk (15 calories).
I stopped her and said, “You are eating and drinking, but not enough to keep you healthy. So, to prevent you from losing any more weight and get even sicker than you are now, I believe that it’s best for you to drink these nutritionally complete liquids that we have available for patients, so they don’t have to worry about counting calories or grams of fat like you’ve been doing at home.
“Starting with liquid nutrition is the healthiest because when people lose a lot of weight like you have, their stomach shrinks and also the muscles in the gut get weak, so digestion and moving food through the gastrointestinal (GI) track is hard. I understand from the doctors in Syracuse that you are constipated, so we don’t want to stress your gut with having a lot of stuff to digest. This liquid nutrition has been designed by dietitians to give you all the nutrients you need in a very small volume so that you won’t get as full as you would eating the foods that are very low in energy, but very bulky.
“You have lots of choices, you can have vanilla, chocolate or strawberry— and one patient liked to mix vanilla and chocolate. You can have it in a large cup or a small cup. You can have it with ice or without ice. You can drink it from a cup or with a straw. Lots of options. The only option you don’t have is to not get it into your stomach.…” I paused to let this information sink in.
She thought for a while and said, “I don’t want anything. That stuff is disgusting. All the flavours are terrible. You can’t make me drink or eat anything.”
I said, “Tell me more about what you are thinking.” And she said, “You can’t make me eat. I have rights and you can’t make me eat. That’s what they said at the other hospital. They couldn’t make me eat, and you can’t either.”
I said, “You’re right, Bridget. I can’t make you eat. But if you don’t eat enough to give your brain and the rest of your body what it needs every day, several times a day while you are here, things will keep going downhill, and I have taken an oath, called the Hippocratic Oath. Part of that is to not just stand by and watch something terrible happen that can be prevented. So, what I’m going to do is to go get the supplies and bring a cup of this liquid nutrition — vanilla flavoured because that is the one that is the most popular — in a large cup. But I will also bring some ice in a small cup, and if you would like me to add that to the large cup to make it colder, I can do that. I’ll also bring a straw so you can choose to drink it or sip it up in the straw. Again, lots of options, just not the option of not taking it.”
The difference between “can” and “may”
Seeing the challenge, Bridget asked, “And what if I don’t drink it, or can’t drink it?” To which I said, “Let’s just see if you might be able to surprise yourself and do something that you think you can’t. With other patients, I’ve noticed that there is a big difference between “can” and “may”. My sister was a teacher and when a student raised a hand for permission to go to the bathroom asking, “Can I go to the bathroom?”, she would sometimes reply, “I don’t know, can you?” If that triggered a strange look from the student, my sister would point out the grammatical difference between can I? (am I able to) and may I? (do I have permission to).
Sometimes when patients say, “I can’t” do something, it’s really that the patient CAN do it, is ABLE to do it, but won’t give herself or himself PERMISSION to do it. Or to put it bluntly, it’s not that they can’t do it, it’s that they won’t do it! It’s a statement related to control and power. Some things that patients say they won’t do are no big deal. But sometimes when they say, I can’t or I won’t, what they’re talking about is too important to let it slide. Your health is something I have taken an oath to protect in any way that I can, and your parents have brought you here because they do not want to see you die. So, I’ll be back and sit with you. I’ll have something to drink with you, so it’s not like someone is just staring at you.”
I came back with an 18 ounce cup with eight ounces of cold Vanilla Ensure™ already poured into it, and an eight ounce cup of ice chips if Bridget wanted it colder. I also had a straw with the paper wrapper still around it. I had some juice in a cup for me to drink. Of course, she drank nothing, staring me down as I tried to make conversation about her pets, her school, and so on.
Finally, I said, “Bridget, I understand that you don’t want to drink this, and will not drink it now. So, my duty to you and your parents is to make sure that you get the nutrition that you need, don’t get any sicker and especially don’t die. And the way I can do that is by placing a long, thin tube through whichever side of your nose you choose — it can go into the right or the left opening of your nose, then just push it down into your stomach. At the back of your throat the tube will bend — it’s very flexible and soft — and then it ends up in your stomach. We will attach the end that comes out of your nose to a machine that very, very slowly pushes a small amount of the liquid nutrition down into your stomach. Once the tube is in place, you won’t feel anything going in.
“There is no taste, no sensation of it going in because it is happening drop by drop. The part of the tube that comes out of your nose can be taped down behind your ear on the side of your neck so that it’s out of the way. Kids can go to school and do normal things with a tube like this. It’s called a NG tube because it goes in through your nose — that’s the N part — and ends up in your stomach — gastro is the Greek work for stomach. So, a NG tube goes in through the nose and down into your stomach. It may feel a little odd having the tube in the back of your throat, but kids get used to it pretty quickly. So, I’m going back into the treatment room and your dad can wheel you down there in the wheelchair.”
As I walked down to the treatment room, Bridget’s mom walked with me, and asked me where the nearest bathroom was for her to use. It was just down the hall. In the treatment room, I was gathering the NG tube still in the sealed bag, a 60 cc syringe, a 6 cc syringe, lubricant, and Tegaderm™ and tape to secure the NG tube. The mom came in a few minutes later and asked where Bridget and her husband were. And I said, “I don’t know, we left them in her room, they may still be there”. It was clear that the dad had not brought Bridget back to the treatment room to have the NG tube placed to start feeding. The mom blurted, “Oh, this is ridiculous!” and stormed out of the room toward Bridget’s room only about 50 feet away, but around the corner. She was clearly more upset with her husband than with Bridget. He was the softie in the parenting dyad.
“Are you going to let him do this to me?”
As I walked out of the treatment room and looked up the hallway, here comes Bridget in the wheelchair being pushed quickly down the hall by her mother who had pursed lips and steam coming out of her ears. Walking a few steps behind, with his tail sheepishly between legs, is Bridget’s father, looking forlorn. When mom gets to the door of the treatment room I welcome them all in. I have two nurses to help me, in case there is resistance. Bridget is sitting in the wheelchair demanding to be told what is going on. Mother on the right, father on the left side of the wheelchair. I say that because she is unable to drink the Ensure™, I will need to place the NG tube to provide the nutrition that she is unable to give herself. It will only take a few minutes. Bridget begins to wail, with snot running out her nose, looking side to side at her parents asking, “Are you going to let him do this to me?”
The father remains silent, and the mother says, “Bridget, we are afraid that we will lose you, and if Dr Kreipe thinks that this is what needs to be done, we are choosing to rely on his experience. He’s given you many chances already, and you don’t seem ready to take in what you need, so he and the nurses will ensure that you get what you need this way until you are able to do it on your own.”
At that, Bridget declared, looking straight ahead above the top of the door, “I used to believe that God gave parents their children. But I can’t believe that God would ever give me to parents like you.” With that, I bit my lip and asked the parents to leave so that we could insert the tube. I suggested the parents go to the cafeteria to get some coffee and regroup. Bridget fought a little bit, but the seasoned nurses knew how to hold Bridget while I placed the tube without difficulty.
One of the nurses wheeled Bridget back to her room while I talked to her nurse about the NG tube feedings and the need to keep an eye on Bridget, but also to take her to the playroom after I examined her, so that she could take her mind off things.
When I walked into Bridget’s room a few minutes later, she was lying on her bed with her eyes closed and arms folded across her chest, looking like she was being laid out as a corpse in full repose. When I spoke she opened her eyes, but otherwise did not change position. I said that I needed to examine her because we like to follow things like blood pressure, pulse, temperature and things like that to see them improve as her nutrition improves. I took my stethoscope out of my lab coat pocket and she turned her head to look at me and asked me what I was going to do. I said, “I’m going to listen to your heart.” To which she replied —and I am not making this up — “Don’t bother, you’ve already broken it,” as she flung her gaze away from me….
Don’t give up. It is hard when your daughter says that she hates you. However, it is not your daughter, but the eating disorder that is saying that.
You are a GREAT mother.
PS: Bridget is an adult now, leading a full life.
Key points to keep in mind
- Prior to takeoff, when a parent is sitting next to her/his child in an airplane, the flight attendant gives instructions that if oxygen masks are deployed in an emergency, the parent needs put her/his oxygen mask on before trying to help the child. It’s not only okay, but essential, that you take care of yourself during this very trying time in your child’s —and your—life!
- Although anxiety does tend to have genetic linkages, a child does not inherit anxiety from parents, but does inherit many, many positive qualities 😉.
- Breathe…and every time you pass by a mirror or even see your reflection in a glass window or door, look at what you see as a marvellous person, not perfect, because no person is perfect, and no parent is perfect. You are a good enough parent (www.psychologytoday.com/us/blog/freedom-learn/201512/the-good-enough-parent-is-the-best-parent).
Take time to write a simple, short letter to your child that has three parts:
- Describe good things about your relationship with her. Not about her, not about you, but the relationship, the connection, the bond, that you share with each other. That is where the never-ending mother-daughter love, lives. Don’t go into a lot of detail, just the highlights to point out what always was and always will be.
- Describe things in your relationship with her that you would like to change. Not things about her, not things about you that you would like to see changed. Things about the relationship that you would like to see different, better, improve. The focus is on how things are now—without blame or fault-finding in either direction.
a. My sense is that you might start to blame yourself for being a terrible mother (which you are NOT), but in my experience all that would do is to trigger feelings of guilt and shame, which will NOT make your child open to change, but retreat further into her feelings of worthlessness, badness, even evilness. I’ve heard patients talk about these kind of feelings because they know that they have loving parents and they HATE what they are doing to them, but they hate themselves, when the eating disorder is active, even more.
b. Also, don’t waste time touching on things that she is doing that bother you. SHE KNOWS THE THINGS THAT SHE IS DOING BOTHER YOU, AND THEY BOTHER HER ALMOST AS MUCH AS THEY BOTHER YOU. The only reason I say almost as much, is that there is ONE thing that would bother her more, and that is TO EAT, TO GO AGAINST THE EATING DISORDER VOICE IN HER HEAD!
c. In fact, it’s a good idea to talk about how the eating disorder has disrupted the relationship between the two of you. It is an external force, insofar as it is NOT HER, but she experiences it as inside her, part of her, because it is a never-ending voice, sometimes screaming in her mind. The ONLY thing that she can do to keep it quiet is to follow the rules and demands of the eating disorder, or pay the consequences of overwhelming guilt, fear, disgust.
3. Finally, describe things that you believe can be done to improve the relationship that you share with each other. The focus is on sharing, by describing:
a. What you believe YOU could do to make things better in the relationship you share.
b. What you believe your daughter can do to make things better in the relationship you share.
This will give you a template for moving forward. You can focus on what you both agree would make things better, then help each other to do those things that help! Focus on what you agree on, not what you disagree on. This is the best way to move forward.