My daughter is 11. She’s adopted and she’s the little being who mended my broken heart after 7 miscarriages…I digress, this is her story, not mine. Izzy is beautiful and brilliant. I know, every mother says that about her daughter, but it’s really true for Izzy. I’ve often said that I got the prettiest and smartest of her and her birthsisters and I mean that 100%. Izzy came into this world with a beautiful head of curly hair and it came to be a defining feature of hers. Izzy with the beautiful, long, curly locks. People we didn’t know would stop us everywhere we went to tell her how beautiful her hair was. Izzy is a dancer, and I never once have had to struggle with a hair style because her perfect hair could do any style the dance studio owner requested. Even on a “bad hair day” she was beautiful. I envied that hair – I had always wanted those natural curls that flowed in perfect ringlets. She would often tell me she wished she had straight hair, and I would always say “oh no….your hair is perfect.” I will never forget her climbing into the car after school one hot and humid day when Izzys hair was a bit large and frizzy from the humidity and she said “see…look at me… my hair looks like a freaking poodle!” We laughed and laughed. I envisioned her putting her head of long curly hair out the car window and letting the wind blow through it with her tongue hanging out just like our dogs would do! And if I’d voiced that vision, she definitely would have done just that!
Izzy has a lot of mental health issues in her birth family. And Izzy herself suffers from ADHD combined type, Anxiety Disorder and possibly OCD. I have always wondered if she’s on the autism spectrum, but have never had a doctor agree with me. In the spring of 2nd grade she started picking on scabs that were on her arms and legs. She would scratch at a bug bite until it opened and bled and she would then continually pick at it and re-open the sore until the depth of the sore was significant. Her doctor diagnosed it as Dermatillamania and tried to encourage her to use fidgets when at school and home so that her hands would be busy with those and wouldn’t pick. But she couldn’t stop herself. I was thankful for Fall and Winter to come around because surely the skin picking would be impossible with socks and pants and long sleeves. But she just found a way around all of that and the skin picking continued. For 2 years the kid skin picked. We had a great medicine to use on her sores and they always healed fairly quickly but not before she would pick them up multiple times first. She always told me that she didn’t like the feeling of the scab and wanted her skin smooth and that’s why she picked the scabs off. In her brain it made sense, and the sensation of pulling a scab seemed almost calming to her. Then suddenly in 4th grade she just stopped. No more picking, no more sores. She didn’t know why, she just didn’t feel the need to do it any longer. Awesome! Thank you God! She’s healed!!
From time to time after the dermatillamania stopped, I would see Izzy pulling her eye lashes or eye brows. I’d ask her what she was doing and she’d brush it off like it was nothing. There were times that she didn’t seem to have very many eye lashes left, but I tried not to worry about it or make a big deal of it. Then 4 months ago, I left home for a 4 day conference in Orlando. On my first night there, Izzy texted me that she had been sitting in the bathroom with tweezers pulling her hair out. Her daddy was downstairs and hadn’t checked on her in awhile and she had pulled a big area in the front of her head. I told her to try and stop and when I get home I’d look at it with her and see what we needed to do. I also immediately texted her daddy and told him to go up and interact with her – so she would stop what she’s doing.
Little did we know that this was the start of something we’d never even heard of. Research on the web (I know, that’s dangerous!) helped me come to the conclusion that Izzy was now suffering from dermatillamania’s cousin, trichotillamania….the urge to pull out ones own hair. It can be facial, head, arm/leg, pubic…any hair. And it’s like a compulsion. She just can’t stop. She pulls at school, she pulls at home, she pulls at dance. In 4 months, she’s pulled out all of that beautiful hair. There’s frustration, there’s impatience, there’s mourning, and now, there’s a sense of peace…A book landed in my lap a couple months ago called “Life is Trichy” and its written by a psychologist who has trich. I devoured the book – and realized that I had done everything her parents had done. I bargined, I yelled, I prayed, I bought her hats and wigs….but this trichotillamania isn’t my fight it’s Izzys. And I can advise, and encourage, I can love and pray, but I can’t fix this. I have to leave it to Izzy and God. That’s hard, but I’m trying. I don’t know where we go from here, but I know through our journey that God’s in control, and he wants us to feel peace.
Izzy and I hope to use this blog to describe what we’ve gone through. The things we’ve tried to help Izzy and where we go from here. As well as how Izzy feels and what she’s thinking (watch out – she’s very black and white and not afraid to curse!). We want to document our triumphs, as well as our down days. To give us a place to just write and maybe a place where others in our trich community can read and feel likeness and know that they are not alone…whether it be a trich patient, or a trich parent, or even our family/friends who are here supporting and loving us.
It's trichy in here 