My Daughter Has Trichotillomania, It Doesn't Have Her.
What is Trichotillomania?
Trichotillomania is a rare condition that causes the sufferer to have uncontrollable urges to pull out their hair. This can be hair from many parts of their bodies, depending on the person. Some people only pull from their scalp. Other people pull from their eyelashes or eyebrows. Even others pull from various other places on their bodies, or a combination of all of the above. There are even people who eat the hair once pulled.
They say that up to 6% of people out there in the world have Trichotillomania, but because it is a condition that most people hide and keep secret, it's really hard to tell for sure. Many people are ashamed of their Trich, not knowing what it's even called or that it's completely normal.
The most important thing to remember about this behavior is that the urges are uncontrollable. The person or child with Trichotillomania cannot help it any more than you can help breathing. Go ahead and try it for a minute. Ready? Go! Just hold your breath. Don't breathe! The longer that you do this, the more demanding the urge to breathe is. The longer you keep from allowing your lungs to inhale air, the harder it is to think about anything else but doing just that. The harder you try to keep from gasping for the life sustaining oxygen that fuels your body, the more important that act seems. It's kind of like that for someone who suffers from Trichotillomania. It may seem like something so easy to stop, but for them, it's not so much easier to control than the simple act of breathing.
She Was Only Nine Years Old
When we first noticed that my daughter had Trichotillomania we had no idea what it was. Just all of a sudden my son asked her what was wrong. Why she had no lashes or brows. I looked at her and was so confused and then angry at myself for not noticing. How could I, her mother, a person who kissed that forehead every chance she could, not notice that she had no eyebrows and no lashes? I felt horrible. I felt like quite possibly the worst mother in the world. And then I was scared. What was wrong with her? Was she going to be okay? How could I get her help?
When asked she told us she didn't know what happened. She told us that she had absolutely no idea, and we believed her. Not understanding her shame. Not knowing that she was so scared to tell us the truth. That she had been doing it in secret. That she lay awake at night, pulling out her own eyelashes, one by one. Pulling out her own eyebrows, one by one. That she was already silently suffering and we had no idea.
The Doctor Visit
The first thing we did, of course, was take her to the doctor. He examined her, but was just as stumped as we were. He had absolutely no idea why all of her eyelashes and eyebrows would have just fallen out. He ordered a whole battery of blood work and when it all came back normal, we were relieved, but perplexed. What was wrong with our daughter? And was she going to be okay? Was there something worse out there that he hadn't tested for? Should we take it further?
A Little Girl's Secret
Finally, after the blood work was normal, but we as a family were still super upset and worried, she told us she had a secret. She came to us and the fear we saw in her eyes... The heaviness of the burden she was carrying alone... We were afraid of what that secret could be.
As parents you always jump to the worst possible conclusion. We feared that someone had hurt her in some way. We were afraid that she had been victimized somehow, some when, and that we had failed her. We had always been the type of parents that didn't trust other people to be alone with our kids very often, but had we let the wrong person get to her? Had someone hurt her? Oh, we were ready to hurt someone back. In just a split second we were ready to decide which one of us would be doing the jail time if someone had hurt our little one. Our precious daughter. Our baby girl.
She didn't want to say at first, and getting her to confide in us without showing her how afraid of her secret we were was kind of hard. We so badly didn't want it to be that very worst of things, but we so badly needed to know what it was so that we could help her.
Finally we asked her to write it down. Whatever it was, it was okay. We loved her no matter what, and no matter what she wrote she wouldn't get in trouble. But that she had to tell us so that we could help make it better. And she did.
She wrote us a note stating that it was her. That she had been pulling out her own eyebrows and eyelashes and she didn't know why. She said in her note that she would stop and we were just so relieved that her secret wasn't that other thing, that really really bad thing, that we held her and told her it was all going to be okay. And because she did stop then, we forgot about it.
For a while.
A few months went by. We forgot about the pulling. We forgot. We thought everything was okay again and when she started getting a little quieter than normal, started spending more time in her room, at first we didn't notice. But then it was easier to see. She couldn't hide it for very long, because we love that face. She had started again.
This time I didn't take it for granted that it was nothing. She broke down. She was angry and scared and hated that she was doing something that she couldn't stop doing. She wanted to stop. She wanted to not be a puppet to something inside her head that kept urging her to pull. She was ashamed.
This ten year old little girl who should be having fun and playing with little plastic dinosaurs (she's always been a tom boy) and laughing at the cartoons she used to love, was carrying this weight around with her. It was sucking up all of her HERness. She was sinking into herself. At ten. She was fading. She had always been so colorful and fun and funny and now suddenly she was just disappearing to a place that we didn't know how to save her from. Because we didn't understand ourselves.
We cried. We were scared. We went looking for answers.
It didn't take us long to figure out what it was. What had our daughter in it's evil grasp. What was feeding on her happiness and stealing it away like a soul sucking vampire. It was Trichotillomania. And it was an ugly beast.
Trich has been around for probably as long as humans have. There's not much known about it except for the fact that there is no cure. There are treatments. Things you can do to try to curb the urge. But nothing that will ever take it away.
I joined chat groups upon chat groups. I scoured medical journal articles and websites. I got as much information as I could.
Trich is an interesting thing, to say the least. Adolescence seems to be the most common time that people start to pull, but sometimes even younger kids do. It doesn't hurt when a Trichster pulls. It's relaxing and releases endorphins. The goal to a good pull seems to be a perfect root. People with Trich have more grey matter in their brains than other people.
But it's a scary thing as well. In every chat room I joined there were adults who had suffered with this condition since childhood. Some of them had been brought up in very accepting, loving homes. But some of them had not. Some of them had parents who told them to stop. Who misunderstood their condition and thought that they were just doing it to be stubborn, or bad, or in control. These children had grown up being taught that what they were doing was wrong and shameful and because of that some of these people were full of shame. Self hatred and low self esteem. Some of these people were so heavily burdened by Trich that they spoke of suicide and ending it all. At just wanting to stop so bad that they would prefer to take their own lives than to continue to suffer.
I realized at that moment that our battle was not going to be with her pulling. I would happily love her if she were completely hairless. Our battle was going to be with her self esteem. If she's ever completely hairless, I need her to also love herself. Because it's only hair. It's okay if it's there, or not. It's such a small thing compared to her self worth. She's so valuable. She's so important. And the rabbit hole she was currently falling down was stripping all of that away from her to herself. And that was what scared me. The thought that one day she might be one of those people who were just so tired of the weight they were carrying that they would just want to give up. To just end. I never want that for her. Not ever. Not even a little. Because she's magnificent. She's beautiful. She's perfect.
For A While It Was Hard
For a while, it really really was. Trich was becoming the driver of our car. It was taking over our lives, even though we didn't want it to. Even though we knew that was the opposite direction we needed to go for her.
We bought her fidgets to give her hands something to do instead of pull. But she destroyed them. She said that they weren't working and they made her so angry at herself that she actually physically destroyed them. Everything we were doing was only making it worse. Trying to help her stop pulling, even though we were telling her it was okay, that we loved her no matter what, was only making it worse. She thought that she was letting us down. That she was disappointing us. That she was becoming a disappointment.
She was losing who she really was to the anger. The shame. Her self esteem was spiraling and we as parents felt so helpless and lost. We didn't want to lose her. But we were failing.
We tried to make an appointment with a psychologist to get her in to control behavioral therapy, but we have Kaiser and the only doctor they would let us take her to ended up being a horrible experience for us, and later we found out that CBT hadn't worked for anyone we knew who tried it anyway, so that turned out okay. But we needed something to happen then. We felt like we were running out of time.
Then We Found Heart
We started bringing her to a support group for children who suffer with Trich. We found it through a link I will share below the article. It was called SoCal Heart and it was worth the 6 hour drive to get there. She got to meet other kids who also had her condition, and that was a game changer for us and for her. We all realized that we weren't alone in this. But more importantly SHE realized that she wasn't abnormal. That there were other amazing kids out there just like her who happened to pull their hair.
We learned from them that kids with Trich all seem to be extra smart. They are usually at the tops of their classes. They all have a hard time falling asleep at night and an extra hard time waking up in the morning. They are all perfect and normal and wonderful and smart and beautiful.
And An Amazing Thing Happened
That was when Trich started taking a back seat in our lives instead of being in control. We asked her if she felt like she was at a place where she could stop. Where she wanted to try to stop. And she said no. We told her that pulling is okay. We explained to her that it's not something that she can control anyway. We told her that if she needed to pull, then to pull. We took away the stigma of what Trich is and we ignored the pulling.
And an amazing thing happened.
She went from practically never having any eyelashes or eyebrows to almost always having most of both. She still pulls but not as often. It's kind of a soothing thing, pulling. People do it when they are stressed or tired or bored. They say that it's caused by anxiety, but I say it IS the cause of anxiety. When she was always trying not to pull she was anxious all the time. She was constantly telling herself no when she got the urges, but the urges were stronger than her. When you focus on not doing something suddenly all you want to do is that thing. So when she was always trying not to pull, she was always pulling.
Now it's just a sometimes thing. An I'm Bored thing, mostly. We all just ignore it. It's still there. It's not going anywhere, ever. It just is. It probably always will be. But that's okay. A really smart lady once said that she was at least in one way grateful for her Trich because when she was stressed she pulled instead of turning to doing drugs, or getting drunk or whatever. (That's a paraphrase, but I got it as close as I could remember.) And a really smart little girl once told me that she was glad that she had Trich because with all that extra grey matter, it made her smarter. (Who knows if that's really why she's as super smart as she is are not, but it was a heart happy moment for us, just the same.)
Trich can be this super ugly horrible life altering thing. It really can. It makes you do things that you don't want to do. It changes your physical appearance and uses your own hands to do it. It tries to suck your happiness and self confidence away, one strand of hair or eyelash at a time. But it doesn't have to. It's always going to be there, but you don't have to let it have you. You can find acceptance. We did. My daughter has Trichotillomania, it doesn't have her. And for that, I am grateful.
- Welcome to the Trichotillomania Learning Center
TLC provides education, outreach, and support of research into the cause and treatment of BFRB disorders such as hair pulling disorder and skin picking disorder