Another Variety of Heartbreak

Trichotillomania: hair loss from repeated urges to pull or twist the hair until it breaks off. Patients are unable to stop this behavior, even as their hair becomes thinner.

It’s been a long time since I’ve written about Annabelle’s hair-pulling, partly because the older my kids get, the more I struggle with weighing their right to privacy against my penchant for being an open book, and partly because, although she has continued to struggle with hair-pulling, it’s been mostly manageable for the last year or two.  Addressing the first concern – her right to privacy – all I can say is that in the end, I’d like to raise a little awareness about this disorder.  My experience has been that when I’ve written about it in the past, people come out of the woodwork confessing that they pull their hair or have a child who does.  The point is, it’s a lot more common than people realize, but it’s something that is usually dealt with in secret because it tends to be so shaming and stigmatized.

While Annabelle has never been officially diagnosed with trichotillomania (trich, for short), I have no doubt that that’s the name for what she does.  She has been pulling her hair since she was about ten months old, and for a long time we hoped it was a phase she would outgrow (our pediatrician assured us she most likely would, as well) – and most of the research out there does support the fact that most children who begin pulling/twirling their hair before age 6 usually do outgrow it.  However, Annabelle has now been doing it for seven years, and I think the chances of her “outgrowing” it are next to nill.  I’m pretty certain at this point that it’s something she will struggle with over her entire life.

Here’s the history of Annabelle’s trich:

Trich, revisited

Parenting a Child With Trich

So why am I writing about it now, after all this time?  Good question.  Answer: because it’s worse right now than it’s ever been.

Like I said, it’s continued to be an issue, but it’s mostly been manageable.  She tends to twist the hair on one side of her head, until it breaks off, leaving the hair on that side noticeably shorter.  So, every so often I’ll trim up her hair to even it all out.

When school let out for summer break a few weeks ago, I decided to try cutting her hair very, very short to see if that would minimize the pulling.  My thinking was that there would be very little to pull, and really not enough to twist at all, and maybe that would alleviate the situation.

This was her hair at the end of the school year:

On the last day of school, when she got home, I bribed her with Oreos and got Michael’s electric clippers out and gave her a pixie cut:

Honestly, I was very surprised at how much I loved this on her.  I know I’m biased, being her mom and all, but seriously, she’s got such a beautiful face, and this cut really shows it off.  She can absolutely pull off a do like this, no problem.  I actually started thinking, hey, we’ll just keep it this short all the time, just because it looks so sweet on her – hair pulling or no hair pulling!

It was only a week or two later, though, that I noticed this:

Yes, that’s right: she has pulled out a bald spot on the back of her head.  A completely new spot for pulling for her, by the way.

I was horrified.  Horrified.  The bald spot has actually grown since I took this picture.  Every time I look at her head, it’s all I can do not to break down crying.

And you thought Down syndrome was a big deal?

This, my friends, is heartbreaking.  To watch your child engage is self-destructive behavior and be utterly and completely helpless to stop it.  She is seven years old.  She has an entire lifetime ahead of her during which this disorder of hers will likely cause her all kinds of self-esteem issues.

So the super short do ended up being an experiment that didn’t work.  For now, we are wrapping her pulling fingers in tape (only because she’s willing; I learned a long time ago that trying to take measures against her will only creates a lot of tension and resentment) and hoping the bald spot fills in somewhat before school starts back up.  She’s going into third grade, and I know that the kids at that grade level are old enough to notice things like that and to be cruel about it.  And despite Annabelle’s acting like she doesn’t give a shit what anyone thinks, she does care.  I know, because she won’t go out in public now without a hat on.

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19 Comments on “Another Variety of Heartbreak”

  1. Becca
    July 12, 2012 at 9:59 pm #

    Oh, this breaks. my. heart. I feel a little stab of pain in my chest reading this, seeing the photos of your beautiful girl, venturing a guess at what you must be feeling. 😦 Samantha, for a while, was doing that to her hair, in the front. We had to trim up the front so it wouldn’t be so ragged, and somehow, miraculously, she stopped. Now she’s putting her fingers in her mouth. Constantly. She seems to go from one thing to the next. But I do know a mother of a typically-developing girl who was pulling her hair much like your little girl is. They tried everything – hats, short haircuts, whatever. Finally she’s stopped, I think, but I honestly do not know what finally did the trick. If you like, e-mail me privately and I’ll give you her contact information. ((hugs))

  2. Sue
    July 12, 2012 at 10:16 pm #

    I enjoy your blog but have never commented before. Have you considered some behavioral therapy? You know how it is, sometimes the kids respond better to an unrelated adult giving them suggestions about how to tackle a problem. And I have a hard time believing this isn’t related to anxiety in some way, given the timing with the birth of the new baby.
    As for PPD, I agree that NO ONE *feels* normal right after the birth of a baby. I look back on my two post-partum experiences and I think 1) Wow, I was not myself and 2) I can’t believe anyone let me drive a car!!! With a baby in it, no less! If the hormones don’t do you in, it is well documented that sleep deprivation is a huge mood changer-hence its use as a torture technique.

  3. Holly F
    July 12, 2012 at 11:21 pm #

    Poor sweetie. Annabelle is such a pretty girl (all your kids are pretty/handsome/cute) but like you said, this will affect her self-esteem at some point.

    A friend in high school had trich. I didn’t know it until one day she showed me the bald spot at the base of her skull (to make me feel better about my nasty habit of biting my nails.) She said that as a child, she would twist and pull hair from all over, but when her parents could not break her of it, they convinced her to only do it in the back so that her long hair could cover the bald spot. While not the best case scenario, could it be a good compromise for y’all once hair has grown long enough to cover it?

    Did you try your idea of a box of tactile items for her to play with? If so, how did that work?

    • Lisa
      July 13, 2012 at 12:57 am #

      Holly, sometimes the tactile toys work for her, sometimes they don’t. At her request, I just bought her several new things to keep her hands busy, but it doesn’t seem to be working to keep her fingers out of her hair right now.

  4. Lisa
    July 13, 2012 at 12:41 am #

    Lisa, I enjoyed reading your post tonight. My oldest has a best friend who deals with this issue. She’s 14 and began by pulling her eyelashes out and then sections of her hair. She has worked hard to hide the issue from friends by masking the bald spots, using creative hairstyles. We feel fortunate that she’s shared the issue with us and made us aware.

  5. Keeping Up With The Holsbys
    July 13, 2012 at 12:45 am #

    It’s tough to overcome something you don’t realize you’re doing. I know a 30 something guy who pulls like mad when he’s stressed and he doesn’t even realize. One side of his head is really quite affected. Good luck. PS that pixie cut totally rocks on her!

  6. Darla
    July 13, 2012 at 2:38 am #

    Lisa, this is heartbreaking. It seems like an OCD type of behavior. Does she do it when she is stressed or bored? My daughter Lexi did something *like* this when she was about 3 1/2 or so. She would twist her hair around her fingers and pull. Obviously, it wasn’t as serious because she quit but I do remember the horror of finding big pieces of hair and having to trim her hair occasionally. At the time, she was also having night terrors, sleepwalking and long, inconsolable crying jags that we determined ( finally) were due to her having dairy, causing *some* kind of chemical imbalance. I am not saying it’s this simple for you, only dishing out my small amount of experience.

    Do you show it to her so she can become more aware that she is hurting herself? Or are you maybe afraid this will do more harm than good? Maybe if she can see this spot she can become more conscious of the damage and try to stop it when she starts. What a burden for her and you.

  7. Darla
    July 13, 2012 at 2:42 am #

    I now see where you wrote that she now wears a hat. I wonder if pictures posted around would help or hurt. Only she can stop this, if *anyone* can. I would just be afraid that it would cause her more grief. I still wonder if it’s a treatable chemical imbalance brought on by *something*. I;m hoping.

  8. Diane Miller Sheets
    July 13, 2012 at 3:25 am #

    I was just thinking about her the other day when I made the appointment to have Falyse’s hair cut. she hasn’t stopped her knotting either and woke up this morning with, what looked like, a hornet nest on the side of her head. it took a lot of patience, a handful of broken hair, and a few tears to get that knot out of her head. it breaks my heart every time I brush it out for her.
    hopefully something works …

  9. mumofone
    July 13, 2012 at 4:44 am #

    I know next to nothing about Trich (other than what I’ve learned from your blog) and this idea may be way out there….but while she’s at home during the summer….what about a wig? She might think its fun (dressing up etc) and she can twirl the hair on the wig as much as she wants to. I’m really not sure if it would work and/or be counterproductive as its not stopping the behaviour just attempting to make it less physically damaging?? She wouldn’t even necessarily need to wear the wig – just have it with her. She might even then get to see how it makes the hair tangled/damaged?? (Though I suspect she already knows this but just can’t stop)
    Either way – sorry to hear this has been an additional stress on you. It must be just so heart-breaking watching your child hurt herself 😦

  10. Stacey
    July 13, 2012 at 6:28 am #

    Oh, I love the idea of a wig for her to finger! To help relieve embarrasment when school starts up again, you can try one of those spray-on fillers for thinning hair. An extra advantage to something like that is, if she plays with her hair when the product is on it, her fingers will get stained & her hair might even look worse, so maybe that extra bit of stick along with the carrot of coverage may help.

  11. jen
    July 13, 2012 at 11:55 am #

    I second the behavior therapy suggestion. Are you in a big enough city that there might be someone who specializes in trich? Everyone has lots of great suggestions here, but if you could get her in to see someone else, who has all the tools in the toolbox and experience working through this with kids, it could really help. At this point, there’s not much hope she’ll just easily grow out of it. 😦 Poor kid.

  12. Linda Kirkwood
    July 13, 2012 at 1:08 pm #

    Wow, I understand your feelings oh too well. When my daughter was in elementary school, she started pulling out her eyelashes. I couldn’t believe it. Her pediatrician said it would pass, and it did, after about a year. But, it seemed like an eternity when she was engaging in the behavior. But, that was a small blip on my life’s radar screen compared to dealing with a son with an eating disorder. Yes, a son. It’s been heartbreaking, frustrating and just emotionally draining. He started at about age 14 and is now 20. We’re still fighting the battle. So, hang in there Lisa, as that’s sometimes all we can do. I feel like that picture of the cat hanging on by its claws for dear life!

  13. Amy
    July 13, 2012 at 4:00 pm #

    I was thinking a wig too. She doesn’t even need to put it on, she can just put it on her lap and twist when stressed. Although I am not sure if this would enable her behavior, but for the time being she can save her own hair until she can work through it. Hugs Lisa

  14. Alyson
    July 13, 2012 at 6:07 pm #

    Oh Lisa:(
    I had really hoped it was better since you hadn’t talked about it in a long time,though when I first saw her adorable pixie cut I had a suspicion it was rearing itself again.
    Because it has gone on for so long now,my only suggestion would be finding a therapist who specializes in pediatric OCD/anxiety disorders. I have my 7 year old girl who suffers from extreme anxiety and it is so complicated. As a Mom it is heartbreaking,yet frustrating, sad yet maddening.

  15. Asha
    July 13, 2012 at 8:13 pm #

    Lisa. Big hugs. I too thought that she was getting better. I am so sorry. Perhaps a therapist would know how to help?
    I wish there was an easy answer…

  16. Vonda
    July 16, 2012 at 1:45 pm #

    I know nothing about this condition, and have nothing really to offer, but it does bring back memories for me. When I was 11 I met Penny, who soon became my friend. She was 12 and ALWAYS wore a scarf on her head. I never questioned why, just thought she wanted to keep her long thick hair back out of her face. I knew Penny for years and years and it wasn’t until I was around 16, and Penny was 17 that she told me her secret for wearing the scarf. She had RIPPED all of the hair out on the top of her head. I didn’t believe her, so she showed me. She was completely bald on the entire top of her head. She had been doing this for years and I asked her why and she said she had no idea. I do know that her parents had gone to many doctors and they had tried some drugs, not sure what types and not sure if they even worked. Years later I saw Penny, we both were in our 30’s, and although we hadn’t been close friends for a long time, we smiled and waved to each other……and she was still wearing her scarf. 😦

  17. Melissa
    August 2, 2012 at 2:21 pm #

    I read both of you posts on trich, and thought about them on my drive home, twirling my hair. My mom has always twirled her hair, and I’ve picked up the habit too. So while not as destructive as your sweet girls, I understand the impulsive behavior and the stigma when it affects your appearance. I have terrible eczema on my hands and can’t help but pick it. It’s so bad that you can’t miss it even when it’s not picked at. I once had someone ask if my hand had been burned. 😦 I hope you find something that works for her.

  18. Elly
    August 27, 2012 at 9:59 am #

    On the topic of growing out of it — I don’t want to make you feel like you have to pin all your hopes on that, but after seeing the analogy to nail-biting/cuticle-picking mentioned in your next post, I thought I’d go ahead and put a personal story out there. I was always a nail-biter, and when I’d chewed my nails down to the nubs, I’d go to work on my cuticles, and from there to chewing on pretty much any bit of rough or callused skin anywhere on my fingers. This actually got progressively worse for me through middle school, high school, college… I remember in my senior year, a friend pulled me aside and confessed that he was really worried about my “self-mutilation” — which was totally startling to me, because I just thought of it as a little nervous tic (albeit a fairly painful one sometimes), but when he said that, I could see why all these chewed-up, bloody patches on my fingers would kind of freak people out… But I reassured my friend that it wasn’t a manifestation of any sort of deep-seated self-loathing or anything, and he accepted that, and though I was now a little more aware that I might be frightening people or just plain grossing them out, it wasn’t something I really knew how to control, and so mostly I didn’t worry about it… So fast-forward ten years, and I was going through a bit of an extra-stressful phase, and noticed myself chewing on a callus, and it started to bleed — and all of a sudden I was hit by the memory of how badly chewed up my hands used to be, and the realization that I honestly could not remember the last time I’d made myself bleed that way. Obviously I hadn’t stopped entirely (because there I was that day), but I must have eased off enough that I’d all but forgotten I ever used to draw blood. Even that conversation with my friend — I just hadn’t thought about it in years. I have no idea how or why or even when this happened…but apparently a habit that only persisted and worsened into my twenties somehow, without conscious effort on my part, became essentially a non-issue by my mid-thirties. Which is basically my really long-winded way of saying that neither you nor Annabelle should despair, because it’s never too late for the chance that this stuff will sort itself out — and that may even happen just when she’s least expecting it…

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