I Have Trichotillomania, TTM For Short

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~ Morning Zen Guest Blog Post - Cynthia Trich ~

I follow the receptionist through the turquoise and white blowout bar past the counter where women perch sipping Bellinis while their hair is dying and their nails are drying. She seats me at a makeshift station set up in a private back room. This is where they serve women whose religion doesn’t allow men to see their hair. My stylist, Kat, does not look alarmed when I remove my wig and shove it into my handbag.

I pull out bobby pins and shake my long hair down my back as Kat says, “We’ll do your color first. What were you thinking?”

“I would like to cover my gray and match my natural dark brown color.”

“I think some red and caramel highlights would look good. Is that all right?”

“You’re the professional. I trust you.”

Kat leaves the room to mix the color, and I breathe in deeply for six counts and out completely for eight counts like I had learned in therapy to calm myself. Kat and I haven’t discussed how she would cut my hair, and I worry it still isn’t long enough do anything fashionable enough to allow me to lose the wig. My last time in a stylist’s chair, 6 months ago, was disastrous.

That summer day I asked a different receptionist in a business across town, “Would you mind if my daughter sat in your waiting room during my appointment? She brought a book and she’s quiet.”

“That would not be a problem,” the woman said. “But you won’t come back out this way. Clients leave through a separate exit. For privacy.”

Resigned to the fact my 10-year-old would have to accompany me, I settled into a chair in a waiting room very much like a doctor’s. There were lifestyle magazines on a coffee table, a fake Ficus tree in the corner and cheap prints of flowers on the walls. Before long an assistant called my name and led us through narrow corridors to the treatment room.

Seated in a hair stylist’s chair by a sink opposite a display of wigs, I felt like I was in a beauty salon. Yet the privacy of the room and the rubber gloves and unfamiliar tools made it feel sterile. I held the clipboard and filled in blanks. I was hoping to get an integration, a semi-permanent hairpiece that is sewn onto existing hair, to cover the bald spots on my crown and blend into my natural hair. It would be cooler than a wig in hot weather and would not slip – meaning I could finally swim and ride rollercoasters.

A few minutes later, the owner of the hair replacement practice entered the room. I looked closely at his hairline to see if he had plugs. I removed my wig and he looked closely at my scalp, moving some strands of hair. I peeked at my daughter; I felt my forehead flush when I realized she was taking in every bit of the exchange, her Harry Potter book forgotten between her thigh and the chair’s armrest. I was embarrassed that I was weak in front of her. Like I was setting a bad example of negative self-image or covering up a problem instead of solving it. I felt almost naked even though she had seen me bareheaded many times. But I never pulled my hair out in front of her.

I have trichotillomania, TTM for short, the uncontrollable urge to pull out hair strand by strand, causing baldness in extreme cases. I seldom wore a wig or scarf at home with just her and her father. When an unexpected visitor knocked on our door, she would snatch my wig or scarf or hat off a chair or table and run to me so I could put it on before I answered. To her, covering up my baldness and keeping my secret seemed normal. I resent the reversal of the caretaking roles.

“Your hair will have to be longer before we can attach a system,” the owner said, snapping me back into the present and the treatment room. Hair replacement companies call their products “systems”, which I guess is preferable to the slang “weaves”, “rugs”, and “plugs”.

My chest tightened and my head buzzed so that I could hardly hear him as he showed me new wigs I could wear while my hair grew out.

“You’ll need two,” he said. “You will have a spare to wear while you send one back to us for cleaning and styling. Whatever you decide you have to replace that ratty old thing.” He gestured to the 15-year-old brown bob in my lap and my cheeks burned. He did some calculating; the monthly installment plan was not interest-free. His assistant thrust a catalog of wigs and the price quote for $2,000, not including the regular maintenance, into my hands and showed us out the back way.

In the parking lot I phoned my husband. It was a short conversation.

“I would rather spend that money on therapy,” he said.

My eyes filled with tears; my past attempts at therapy had been a waste of money and time.

* * *

My first therapist was my pediatrician’s wife, and I met with her in his office. She gave my mom a photocopied magazine article to explain my diagnosis. That was in 1988, when I was 11 years old, and information about treating TTM was more limited than it is today. My case isn’t as severe as some I’ve read about; they pull every hair on their bodies including eyebrows and eyelashes. Some eat the hair – a condition called trichophagia – and have intestinal problems, basically a hair ball, and it can be fatal.

On the rare occasions, I have revealed my disorder, the first thing people say is ‘Doesn’t it hurt?’ I tell them that pulling out individual strands of hair by the root does not hurt the way it feels when a clump of hair is pulled out.

But how does it feel? Well, physically there is a release when the follicle lets go of the hair’s root. Psychologically, there may be some small relief of mental or emotional pressure. I believe this is where the idiom “so upset I could tear my hair out” originated. Hair-pulling, sometimes done unconsciously, can be soothing to someone having anxious or upsetting thoughts. Think about a child sucking her thumb.

I probably had signs of the disorder years before my diagnosis. As a young child I liked to rub my eyelashes between my fingertips. TTM is often about sensory experience; the fingertips caress and select a single hair and tug, sometimes rubbing the hair across the lips, then another and another. It is a body-focused repetitive behavior, like its cousin, skin-picking. Sometimes tension builds up in my chest and stomach; I feel really anxious and my fingers fly to my hair.

To keep my hands busy, my first therapist gave me a foam stress ball to squeeze. She encouraged me to snap a rubber band on my wrist when I caught myself pulling. I learned many years later the technique is called a competing response. At her office, she asked me why I pulled. I was 11; I didn’t know. Twenty-eight years later I still can’t explain the relief or release or reward I got when I pulled. I also don’t know why my mom stopped taking me to that therapist. I hadn’t been effectively treated.

* * *

Kat returns to the room and commences painting color onto sections of my natural hair she then wraps in foil. If she is curious about my condition, she doesn’t ask, except to see if I would be comfortable getting my hair rinsed beside other women in the open salon. I am.

Until now, I had dreaded the stylist’s chair and would go years between haircuts. Explaining the bald patches on my scalp to a stylist – or worse, removing a hairpiece or scarf in front of other customers – was too embarrassing to face. While realizing I wasn’t bringing much to the chair for her to work with, I still desired to keep the relationship with the stylist “Don’t ask; don’t tell.” I hated answering questions but my standard response was “Stress makes my hair come out,” which was close to the truth. I hid the bald patches with headbands, hair clips, scarves and hats. At my lowest points, I wore wigs.

My mom bought my first wig at a store in the mall – a hot, scratchy hairpiece in an unfashionable style. It was wavy and looked like it belonged on a middle-aged woman. I wore it in 8th and 9th grades with a wide headband because I was afraid the wig would slip or blow off, which made me look like Annette Funicello in a 1960s beach party movie.

In the best of times, I would stop pulling and my hair would grow back. TTM can relapse and remit. In the worst of times, I covered the problem with scarves, hats, and wigs.  The year after I turned 21 should have been the best time of my life. I was newly married to my high school sweetheart.  I was a newspaper intern and a journalism student. Life was good, but the pressure was great; I pulled out handfuls of hair. When I could no longer cover the bald spots, my mother ordered from a catalog a new wig in a brown bob.

Over the years I occasionally sought treatment. I tried the antidepressants Prozac and Luvox because I had read that selective serotonin reuptake inhibitors were effective in treating obsessive-compulsive disorder, which is what researchers used to classify TTM as. Now they see it as an impulse-control problem.

At another time I saw a psychiatrist, who took notes while I rambled about my stressors, mainly a toxic boss, for an hour. She left me to figure things out for myself. She never told me how I was progressing and she certainly never mentioned when my treatment might end. I pulled more. I stopped seeing the shrink in 2007 when I quit my job because of the stress. The crown of my head was nearly bald. I covered it with scarves for the next three years, until 2010, when at a dress rehearsal for a concert, I realized the scarves were no longer giving enough coverage.

* * *

Poinsettias ringed the dais beneath a gleaming wooden altar in the 100-year-old church. The Community Chorus was dreaming of a white Christmas. I was praying the singers standing on the risers above and behind me were not looking down at the top of my head and seeing what isn’t there. My face felt as red as the Christmas flowers.

I drove home and went straight to my bedroom. I stood on tiptoes and felt around on the shelf in my closet for a metal pail printed with flowers. My fingers closed around the handle and I pulled it down and pried off the lid. Inside was my old wig, the brown bob of synthetic fibers my mom mail-ordered more than 10 years before. I washed the wig and hung it to dry and accepted the fact that I was sick enough to go back to wearing it. The wig would give my real hair time to grow back on top of my head and, when I had a full head of natural hair, I would stop pulling it, I lied to myself for the umpteenth time.

Almost daily for the next two years, I braided my long hair or spun it into a French twist, bobby-pinned it to the back of my head and pulled the wig over it, tucking wisps of my real hair under the elastic band of the cap to which the fake strands were attached. And I convinced myself I blended in with normal people because my hair didn’t look any different from theirs. I kept pulling; years kept passing, and the wig kept aging.

* * *

It was the wig’s threadbare condition that spurred me to the hair replacement office. My disappointment there and my husband’s reluctance to spend money for another wig propelled me to a new doctor’s office. On July 16, 2013, I was wearing my ratty wig and sitting on the edge of a sofa in the new therapist’s office. I might have appeared poised to act on the fight or flight impulse I was feeling, but truthfully, if I scooted back, my feet would barely touch the floor. I was conscious of my posture; I bet this woman never slouched. She dressed stylishly with coordinated jewelry. Her blond hair coiled in tight spirals. The sofa’s embroidered pillows reminded me of the last shrink’s, and I took that as a sign this one was going to fail me too. But at the end of the hour-long intake session, the therapist, Dawn, said something no other provider ever had. She suggested a definitive treatment plan: We would start cognitive behavioral therapy at the next session. I drove home and Googled it. Anxious to get started, I tried focusing on nothing but slowly inhaling deeply and exhaling completely for 5 minutes. Grounding techniques such as breathing is an early step in CBT.

After a week of diaphragmatic breathing, I moved on to recording when I pulled and recognizing what triggered each episode.

“Tell me about a situation this week where you realized you had cognitive errors,” Dawn said one morning.  She was teaching me to recognize and dispute the kinds of, often irrational, thoughts that made me want to pull my hair.

I told her about chaperoning my daughter’s field trip and the little boy who wanted me to hold him. How it made me uncomfortable, not wanting to reject him but also not wanting to school personnel to think I was being inappropriate.

“What was your anxiety level related to these automatic thoughts?,” Dawn asked. “From zero to ten.”

“About a three. I was anxious and cautious.”

“What were the unhelpful thinking styles?”

“Mind-reading; that someone would think I was trying to hurt him.”

She also pointed out that I was engaging in “all-or-nothing thinking,” by assuming the boy would feel rejected.

“You saw that as black and white with no middle ground. If things aren’t wonderful, they’re awful, and if what you do isn’t perfect or the right response, then you’re a total failure.”

“I hadn’t thought of it like that before.”

“Now, challenge your irrational ideas.”

“Well, I was in a room full of people, including workers. No one would think I would try to hurt him in front of that many witnesses.”

One day about four months into our sessions, my never-a-hair-out-of-place therapist asked, “Is your hair growing back?”

I hadn’t pulled a strand in weeks. I reached up to remove my wig, something I had never done in front of her. “Would you like to see?”

“You don’t have to if you don’t want to,” she blurted.

“I don’t mind.”

“Cynthia!” Dawn’s discomfort turned to delight. “I think your hair is long enough to ditch the wig. I’m sure you could get a cute, short cut.”

There were no obvious bald spots, but my hair was shorter in some places than others.

I know it seems unbelievable that I could fix the most obvious symptom of my disorder so quickly. I hadn’t tried cognitive behavioral therapy sooner because I had never heard of it. I don’t pull my hair now and haven’t for almost three years.

Still, I didn’t run right out of Dawn’s office that day and make a salon appointment.  When I thought about calling a salon, my throat tightened, my mouth went dry and my hands numb.  I didn’t want a roomful of strangers watching me remove the wig and listening to me explain why my hair was short on top and so long it could be braided in the back. But as I kept recording my irrational beliefs in my thought diary and invalidating each like I learned in therapy, I realized I was healing.

A few weeks after Dawn’s declaration, I was ready.

* * *

Sitting in Kat’s styling chair, I have even fewer ideas for a haircut than I do for the color; fortunately, she does. She trims 10 inches off the back, creating a fashionable, short style that blends new growth into the layers she made. The top, parted on the right, flips over the sides and feathers around my ears while the back juts out in spikes.

“I love it! You look so different!” gushes the salon owner when I pay. “Do you love it?”

I do, and I book my next appointment – for a seat at the blowout bar.

* * * * 

Cynthia Trich is the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."

Comments

  1. Liz's avatar
    Liz
    | Permalink
    This article gave me goosebumps. THANK YOU, Cynthia, for sharing your story and your courage in continuing to seek help. Best wishes to you! This is a powerful reminder that, as therapists, we have a responsibility to each client to provide the right care and to know when we can't. It also brought me much happiness to know that there are salons sensitive to these issues.
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