In and around 1994 I started pulling my hair out. I didn’t think anything of it. It did not hurt, but it actually felt good, really good and comforting. I would sit in class in high school and pull one strand at a time and sit at home in my room pulling for hours while studying or trying to go to sleep.
It wasn’t until about 2 years later had the damage become noticeable to my mother. I denied knowing why my hair looked the way it did. I was rushed over to the pediatrician to whom I again denied that I was doing this to myself…the doctor had thought “alopecia” and at that time I was sent to a dermatologist. The dermatologist ruled out alopecia. The pediatrician then sent me to a psychiatrist.
After meeting with a psychiatrist I was told I just have anxiety, take these pills (Ativan) (all day long!) and stop pulling your hair. For months I spent my days comfortably numb yet still pulling. Months later I landed an appointment in psychiatry at Sunnybrook hospital. Still, I didn’t understand what was going on.
Shorty thereafter, I ended up with a diagnosis of clinical depression and a “hair pulling disorder” which I now know is called and diagnosed in the DSM -V (Diagnostic Statistic Manual of Mental Disorders 5th Edition) as “trichotillomania” compulsive hair pulling. At that time I ended up on anti-depressants also with hope to curb this “hair pulling” and mood disorders. A while after that I learned I had Needless to say the anti-depressants, (every which one I tried over 15+ years) did not help my pulling, It actually continued to make pulling worse. Still I was in bi-weekly appointments with my psychiatrist. I was also medication therapy (attempting) to learn Habit Reversal Therapy (HRT), breathing techniques, Cognitive Behavioural Therapy (CBT) along with the medication therapy. Nothing seemed to work. I did not “get it”, which in turn, thwarted my depression symptoms.
For years I felt like I was ridiculed. I was living in isolation and living in shame. What I did know was this destructive behaviour provided me with short term gratification (with long term consequences). Trich quickly became my coping mechanism for my emotional state; actually, for everything actually.
There was no support or understanding outside of psychiatric and mental health community, and still, it was scarce. I felt like nothing but a crazy who ripped out her hair; I felt I belonged locked up. By 2004 my balding was significant and I was wearing a wig. My frustration grew. In the mid 2000s while still suffering trich and depression I decided to take matters in my own hands research and find some answers.
Then, at that time I came across TLC, Trichotillomania Learning Center based in California. I was shocked to find such an organization and with that came a small sigh of relief. Shortly thereafter I placed a call to TLC to have my call taken by Christina Pearson, the founder of TLC. With tears rolling down my face, on the other end of the line, Christina assured me “you are not alone”. From here on in I knew there was some hope.
In 2009, scared out of my wits, I packed my bags and flew to Boston, MA to attend my first TLC conference. From there I found hope, strength, and courage from other suffers to attempt to defeat this disorder. I returned to Canada and brought my knowledge and understanding to my psychiatrist and doctor here with hopes for a cure, yet still, over the years I continued to suffer and felt hopeless.
In 2012, shortly after returning from a conference in Chicago, IL and with a head 90% bald I felt that I was completely defeated by this disorder, yet I knew there was hope. Trichotillomania and mood disorders had taken over my life and I hit rock bottom. September 29, 2012 I shaved my head. In one breath it was liberating and I felt free; and on the other hand, I felt defeated, that this disorder won. I eventually realized shaving my head was the best choice I ever made. I chose to stay positive and make every effort to work towards recovery and while still working with a psychiatrist on a monthly basis.
In 2009 when I met Dr. Jon Grant (University of Chicago, Department of Psychiatry and Behavioral Neuroscience) and Dr. Joseph Garner (Stanford University School of Medicine) [TLC’s scientific advisory board members] and learned of their scientific research on the amino acid N-acetylcysteine (“NAC”) (a glutamate modulator), and the effect on glutamate & oxidative stress (on the brain) & the effects of the reduction of chronic -pulling.
I diligently followed this research for years. I again met with them in 2012, and shortly after my shave I decided to try NAC (as presented in Dr. Grant’s research). Remarkably, my urges, my cravings, and my pulling were reduced significantly. I then realized that if I put effort into behaviour therapy things might change even more. I started learning and taking a different approach by teaching myself and learning mindfulness/ meditation, urge surfing, breathing techniques, acceptance therapy, and most importantly emotional regulation. All of these are a daily part of my life today.
Over the years I have participated in research studies such as the Massachusetts General Hospital/Harvard Medical School Genetics Study of Trichotillomania and Chronic Hair Pulling and the OCD and related disorders Pharmacogenetics study at Sunnybrook hospital in Toronto, and I will continue to participate in available research.
Today I am glad to say I am nearly pull free with hopes to eventually maintain abstinence. Although I must be mindful that relapse and to revert back to my old ways is always possible, and I must maintain my daily efforts. Recovery consists of willingness to confront and accept your negative thoughts, urges and feelings and the ability to work through them; to practice self compassion, love yourself. To recovery, it is daily work. I will continue to raise awareness, educate and advocate to the public and medical professionals.
I am truly thankful for coming across TLC in the mid 2000s. I am grateful for my wonderful friend, Sarah Robertson for founding the Canadian Body Focused Repetitive Support Network (“CBSN”) in Toronto, Ontario (my home town) and starting support groups across Canada. In addition, she has done an astounding amount of work with The Frederick W. Thompson Anxiety Disorders Centre, at Sunnybrook Hospital and we are grateful for Toronto’s BFRB trained professionals. I am thankful for the OCD Center of Los Angeles weekly reflections and “trich” tips. I am thankful for our Toronto support group. To be others who suffer from the same condition as peer support is crucial to ending suffering in shame and such a helpful tool for recovery. Last but not least grateful for my many trich friends from around the world whom I maintain constant contact with, and the loving support very close to home.
Live one day at a time; and together we are stronger.
Newmarket, Ontario, Canada