Guest Post by Marcia, parent of a trichster
If I had a magic wand I would wave it over my daughter and she would magically stop pulling her hair. I started having this wish when my daughter was a nine year old. That’s when she first started pulling. At first it was seen in uneven edges around her bangs—a little pulling here and there of her beautiful blonde scalp hair. By the time she was eleven it started to become more noticeable and from then on until now, at the age of 17, she is pulling scalp hair, eyebrows, and pubic hair.
Both my husband and I are nurses. We are smart people who have the educational background to figure out solutions to many problems. But this one was more challenging than the others we’ve dealt with in our own practice. For one, this was our daughter, not someone else’s daughter for whom we could provide nursing care. This girl was a member of our family—a much more difficult family assessment to make than when someone else’s daughter is admitted to the hospital for a surgical procedure or an acute illness. So, we resorted to what parents do when they have no control over situations and have little understanding of what is happening. We screamed and yelled at the sight of clumps of hair in the sink or in the car. We cried when she returned home after her first week back to school in the fall with over half of her scalp hair pulled out. We argued with one another about the best way to deal with her pulling. We advised her brother to stop telling kids at school that his sister “has issues” when they would ask him why her hair is so thin. We tried koosh balls, gloves, soft brushes and endless other ideas to prevent her from pulling. We tried incentives. Countless well-meaning friends and family members gave us ideas to get her to stop pulling or pointed out how much and how often she was pulling. They peppered us with questions: Is it related to anxiety? Is it because of the fetal alcohol history? Why does she do it? Will there be a time that her hair follicle is destroyed and doesn’t grow back?
Making the situation all the more complex is that our daughter was adopted at the age of five. We know little about her background so information about genetic linkages is interesting but doesn’t mean a lot to us since her brother doesn’t pull. As “good” nurses and “good” adoptive parents we read multiple books about attachment, post-traumatic stress, fetal-alcohol effects/disorder and other behavioral challenges that occur in some adoptive children. She has been diagnosed with ADHD, Obsessive Compulsive Disorder, and Anxiety. As nurses, we know how to use our resources. We live in a metropolitan area with ready access to child psychiatrists, child therapists, and even a renowned hypnotherapist who has specialized in the treatment of trichotillomania. We took our little girl to see all of these people. The psychiatrist continues to follow her and provide mental health care with medications that have yet to provide consistent results. The child therapist told us that she couldn’t continue to work with our daughter because she lied too frequently. The hypnotherapist informed us that she wasn’t participating in the therapy and so we chose to terminate rather than waste time and money since she wasn’t ready to engage in the therapy. Given this we’re holding off on cognitive-behavioral therapy at this time.
One of the many suggestions made by well-meaning friends was to purchase a wig. We did just that—and within 5 months she pulled almost all the hair out of the acrylic wig. We thought that maybe a human hair wig would work better. We purchased one for her and within another 6 months she had pulled out most of the hairs of that wig as well. We were at wits end and then, when accompanying her to the salon where she was fitted her with a wig, I saw a pamphlet published by the Trichotillomania Learning Center “I have trichotillomania (trick o til o may nee ah)” Spelled out in a way that my reading challenged daughter could read, answering questions using understandable descriptions/ terms, and most importantly leading my husband and I to discover the Trichotillomania Learning Center.
Many of you reading this personal account are likely to be able to identify with much of what I’ve written. Like you, I have read many of the publications on the TLC site and countless other articles published by members of the Scientific Advisory Board. However, in some ways I might be different from you. I am a PhD prepared nurse educator teaching nursing at a local university and am a published nurse researcher. The point I am making is that because of my professional background one would expect that I would somehow know more about this disorder than the average consumer. But I didn’t and I learned so much since I first started my reading. Now I have much more knowledge that I can share with students in my classroom and school nurse colleagues.
However, more personally, it has taken a good deal of time for my husband and I to realize that although we have no idea why our daughter continues to pull her hair (that journey of discovery we’re still traveling together) and despite my PhD in adolescent health care, I ignored much of what I had learned in my studies about adolescent development and parenting. I could see the normal developmental struggles we encountered as Anya tried out her growing independence when we set limits about the hour of the night we expected her to return home. However, I didn’t connect a similar struggle for achieving autonomy while pulling with my own unwillingness to relinquish my needs to continue to protect, control and maintain responsibility for pulling behavior that I believed would in some way embarrass her or our family. In other words control is not support. I am here to provide suggestions. She takes them into consideration or ignores what I have to say.
I share this reflection because I believe that parenting an adolescent is challenging and from my experience parenting an adolescent with trichotillomania is even more challenging. I don’t know all of Anya’s family history and indeed it is complex, but for me it points out the fact that each individual struggling with pulling is unique. There are similarities among “pullers” and investigation into these similarities will bring us closer to a greater understanding of the disorder. Likewise, there are similarities among individuals parenting an adolescent with this diagnosis. Studying these similarities will bring us closer to a better understanding of how to parent in a way that supports independence and efforts at treatment but doesn’t attempt to control behavior. Many members of the TLC community are engaged in these investigations. I hold great hope both in discovery of successful treatments for the disorder and for interventions aimed at parenting, particularly with adolescent pullers. ~Marcia