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Sandy Rosenblatt

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Trichotillomania: The Secret I'm Finally Letting Go

Posted: 10/01/2012 12:30 pm

trichotillomania

Who you are looking at in this photo right now is a fraud.

Every day I go to great lengths to hide what I really look like. Every day I make sure you don't see what I do every morning when I wake up and look in my bathroom mirror. Because I have a disorder that an estimated 2-4 percent of the nation has. Few know about it, and even fewer are willing to talk about it.

I have Trichotillomania. Trich for short. The disorder causes people to pull out the hair from their scalp, eyelashes, eyebrows, pubic area, underarms, beard, chest, legs or other parts of the body. Hair pulling varies greatly in severity and location, but many times results in noticeable bald patches. Many who suffer from it go through phases in which it presents as very severe, while in others it is barely done at all. My worst phase was between the ages of 7-11.

If you know someone with Trich or you're reading this and finding yourself wanting to ask me, "Why don't you just stop?" -- please don't. It is a question many of us who have the disorder ask ourselves on a daily basis. When asked by someone else, we usually just wait uncomfortably for the subject to change. Here is the answer: Most of us will never be able to stop. If we could, we would.

Today, at 38, I have no eyelashes on my upper eyelids. I pull them out whenever I'm anxious, sad or stressed. Each morning I spend at least ten minutes meticulously applying heavy black eyeliner before I face the world, so that no one will notice that I don't have real eyelashes. When I'm in a relationship, I find myself sneaking out of bed in the middle of the night to reapply it, so he won't see me without it. I have lived in fear of others discovering my secret.
I, like many others with the disorder, carry a lot of shame. I'm ashamed of the hairlessness, and I'm ashamed that I can't stop. I'm also ashamed that I want to hide it. And I make the whole thing mean something about myself. I make it mean that I am ugly, I am unworthy, I am unlikeable, I am unloveable. This is a story I began telling myself when I was 7 years old, when it all started.

When I was 7, my parents got a divorce. My father moved out of the house and my concept of what a family was, was shattered. I began to pull. I had no idea what I was doing or why I was doing it. I only knew it felt good.

At first no one noticed. My secret was still safe. Then, little by little, tiny bald patches appeared on my head. Little by little, I had fewer eyelashes and eyebrows. At some point my parents began to notice, and I remember them asking me why. I was 7 years old for God's sake -- how was this little girl who was once bubbly, energetic and innocent supposed to explain the sudden self-destruction, the sudden desecration of her own body?

I had no answer for them. They took me to doctors and psychiatrists, only to find that there was no explanation for why the disorder starts, and that for most people, there is no cure. (There are treatment options, but as of 2012, most with the disorder will not be cured. Many of us living with it have the luxury of knowing we will always have to battle this).

Then, just as my parents began to have me see a doctor regularly in hopes of ending what many see as self-mutilation, the kids at my school began to notice. The other kids stopped playing with me and began calling me a freak. I started to dread taking the school bus, as I never knew when the older kids would bully me, calling me ugly or chanting, "What's wrong with you, freak?" Sometimes they pushed me down the aisle or onto the floor, and sometimes they kicked me while I was down there. At one point these same kids came to my house and asked me to come out and play. I was thrilled; I thought maybe they'd changed their minds and I was actually being accepted (oh, the innocent mind of a second grader). Instead, they took me around the corner to beat me up. I was alone.

As a child I used to love being in photographs. But around this time, I began to want fewer and fewer of them taken of me. I couldn't even look at the photos my parents had hung on the walls. I also stopped looking in mirrors. I knew who would be there staring back at me -- that person everyone called freak, the girl that had something wrong with her. Why would I want to look at her? No one else did. And when I was old enough, I took those photos down and hid them. I asked my family to never take them out; I never wanted to see them again. Why would I want to be reminded of a time in my life with such painful memories attached? My family obliged. My plan was to never in my lifetime ever see those photos again.

Then recently, something changed. I went through my 20s and most of my 30s consciously, deliberately, determinedly not looking at the pictures, not dredging up the memories. But little by little, perhaps without me even realizing it, I grew up. I grew into myself. Maybe I grew beyond who I was before. I don't know. I do know that as I have grown into a woman I love, I decided to do what I promised myself I would never do: I decided to look at the photos. I chose to no longer avoid what I had kept hidden away for so long.

It was a decision born of the intuitive sense that maybe (fine, likely) there was something there for me. I didn't know what, exactly. A connection to the past, perhaps? An admission that I had really lived through that, that now I was different -- or that in reality I was still the same? Whatever it was, even after I decided to do it, it took me weeks to muster up the courage to actually look at them. Then, the night I finally sat with them, I studied them for hours. One question kept echoing in my mind:

Who was this little girl I was looking at?

I was looking at a little girl who loved to rollerskate with her dad. I was looking at a little girl who loved riding her bike. I was looking at a little girl who used to jump rope with her sister, with two ponytails in her hair that her mother tied with ribbons. I was looking a little girl who was told she was ugly, that she was a freak, that there was something wrong with her. I was looking at a little girl who at some point decided that what everyone else said (aside from her parents and grandmother) was true.

In other words, I was looking at me, and the time in my life when I made a choice. I chose my story: I am ugly, I am unworthy, I am unlikeable. Worst of all, I am unlovable. I chose to live that story for a portion of my life while doing everything I could to prove otherwise. I worked hard to distract people, to make them like me even though I knew I was unlikeable, to make them love me even though I knew I was unloveable. I believed my story, and I lived it out, every day.

But what I realized, looking at those photos again, reliving those memories, was that it was always just a story. It wasn't "true," it was something I made up. Not only that, but I made it up when I was 7. And that story I wrote as a young girl who didn't really know any better but was doing the best she could, was fiction. As an adult, strong and conscious, I found that the story I'd gone around telling myself and others for years ... it just isn't true.

I believe the stories we tell ourselves about ourselves create our lives. They don't necessarily create the circumstances (although I believe they do affect them in deep and profound ways), but they create our experience of our lives. So even if I'd been loved, I hadn't felt loved, because I had the story that I was unloveable. And even if I'd been told I was beautiful, I didn't believe it or feel it, because in my story I was ugly.

So here's a different story: I am a beautiful, passionate, loving woman who will do anything for the people she loves. I am authentic with myself and with others, even when it's uncomfortable or nervewracking. I am a person open to learning and growing. I am a human being, alive and vulnerable and true.

That is my real story. That is who I am.

WATCH:

RELATED ON HUFFPOST WOMEN: Possible Reasons You're Losing Your Hair

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  • Trichotillomania

    Trichotillomania is an impulse control disorder. Although the underlying causes for this disorder are not concretely understood, its most obvious symptom is the urge to break or pull out one's own hair. Individuals that have trichotillomania cannot control these urges and often pull out entire patches of their hair -- often from the scalp or eyebrows. The disorder is fairly rare -- <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002485/" target="_hplink">4 percent of people in the U.S.</a> are affected by it -- although men are less likely to experience these urges than women are.

  • Hair Care

    Are you a hair dye junkie or someone who consistently flat irons? You could be damaging your hair with these <a href="http://www.aad.org/skin-conditions/dermatology-a-to-z/hair-loss/who-gets-causes/hair-loss-who-gets-and-causes" target="_hplink">hair care practices</a>. Both excessive use of hair treatments (i.e. bleaching, perms, relaxers) and products (i.e. blow dryers, straighteners and curling irons) can make hair brittle. Luckily, these types of hair damage are not permanent -- change the bad-for-your-hair habit and your hair should restore itself!

  • Tight Hairstyles

    Over time, men and women who consistently wear their hair in styles that pull at the scalp (i.e. tight braids, weaves, tight ponytails) may develop a condition termed "<a href="http://www.mayoclinic.com/health/medical/IM01253" target="_hplink">traction alopecia</a>." According to Dr. Alexis, traction alopecia is a hair loss condition that is seen far more often in women than men. A couple of the experts we spoke to also said that in their practices they most often saw traction alopecia in African-American and Hispanic women -- although the condition spans all ethnic groups. Chris Rock's <a href="http://www.youtube.com/watch?v=1m-4qxz08So" target="_hplink">2009 documentary film, "Good Hair,"</a> addressed some of these issues as they effect the African-American community. "Women put up with a lot of pain," Dr. Cotsarelis told The Huffington Post. "Pain to your scalp should be avoided." Sounds like a good rule of thumb to us!

  • Nutritional Deficiencies

    Iron and protein deficiencies are two of the most common nutritional triggers for hair loss. If individuals have low levels of iron -- even if they are not anemic -- hair loss may occur. An article published in the May 2006 edition of the <em>Journal of the American Academy of Dermatology</em> concluded that hair loss treatment was made <a href="http://www.webmd.com/skin-problems-and-treatments/hair-loss/news/20060516/hair-loss-may-be-iron-deficiency" target="_hplink">more effective when a patient's iron deficiency was treated</a>. Dr. Cotsarelis says that he consistenly checks the iron levels of any patient that comes to him experiencing hair loss. However, the exact reason behind this correlation has not been proven. <a href="http://www.aad.org/skin-conditions/dermatology-a-to-z/hair-loss/who-gets-causes/hair-loss-who-gets-and-causes" target="_hplink">Protein deficiency</a> is more straightforward. Hair growth requires protein, and when the body is not getting enough, it moves these protein supplies to other, more necessary functions. Once an individual's diet is adjusted hair growth usually returns to normal within a couple months. While not a <em>deficiency</em>, for those that have Celiac Disease or gluten-sensitivity, the introduction of the gluten protein into the system <a href="http://www.livestrong.com/article/443464-gluten-sensitivity-hair-loss/" target="_hplink">may also lead to hair thinning</a> or loss. In this case, it is the immune system that attacks hair growth.

  • Major Weight Loss

    Although this trigger technically falls under nutritional deficiencies, we felt that it warranted specific attention. According to the <a href="http://www.aad.org/skin-conditions/dermatology-a-to-z/hair-loss/who-gets-causes/hair-loss-who-gets-and-causes" target="_hplink">American Academy of Dermatology</a>, individuals who lose 15 or more pounds (even through healthy means) often experience some amount of hair loss. This type of hair loss usually self-corrects without any need for treatment. More concerning is hair loss as a result of an eating disorder, such as anorexia nervosa or bulimia. These eating disorders do not allow the body to receive the necessary vitamins, minerals and protein that it needs to function healthfully -- which in turn <a href="http://www.aad.org/skin-conditions/dermatology-a-to-z/hair-loss/who-gets-causes/hair-loss-who-gets-and-causes" target="_hplink">can shut down hair growth</a>. "Anorexics can have very extreme hair loss," says Dr. Cotsarelis. "I had a patient in her 20s who was anorexic -- her hair was just coming out in gobs because of poor protein intake."

  • Thyroid Disease

    Hair loss is a common symptom of an <a href="http://women.webmd.com/slideshow-thyroid-symptoms-and-solutions" target="_hplink">imbalance in one's thyroid hormones</a>. Both hypothryoidism (an underactive thyroid) or hyperthyroidism (an overactive thyroid) can lead to excessive hair shedding. Once the thyroid imbalance is treated, the hair generally regrows.

  • Menopause

    Doctors still are unsure what the scientific connection is between menopause and hair thinning -- but many women, in their perimenopausal years, experience some sort of generalized hair loss. Some combination of <a href="http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes" target="_hplink">hormonal changes</a> are likely at play. "We don't really understand exactly why, but it's pretty clear [that there is a connection]," says Dr. Cotsarelis. "[Many] women have very thick hair their whole life and then when they go through menopause, they [experience] thinning."

  • Alopecia Areata

    When we hear talk of "alopecia," most likely what is being referred to is alopecia areata. Alopecia areata is an <a href="http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes" target="_hplink">autoimmune disease</a>, which means that the body attacks itself. Alopecia areata is usually characterized by <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002421/" target="_hplink">hair loss in round patches</a> on the scalp or other parts of the body and affects men, women and children.

  • Trauma/Stress

    Telogen effluvium is defined by Dr. McMichael as "shedding due to physiologic stress." McMichael told The Huffington Post that a traumatic or particularly stressful event is a common reason that individuals experience this type of hair loss (even more so for women than men). The most common emotional causes of telogen effluvium are life-altering occurrences such as a death or going through a divorce. These events can cause hair to be <a href="http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes" target="_hplink">forced into the resting state</a> before they normally would be. According to Dr. Cotsarelis, this type of hair shedding often does not show up until two to four months after the trigger occurs.

  • Illness

    Illness is <a href="http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes" target="_hplink">another possible cause of telogen effluvium</a> -- most often triggered by a high fever. The stress on the body that illness causes can become a disruption to the hair cycle. Once the illness is gone, the cycle gets itself back on track.

  • Medications

    Many medications have hair loss listed as a possible side effect, although various types tend to affect each person differently. Medications that contain hormones -- such as the <a href="http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes" target="_hplink">birth control pill</a> are common hair loss culprits. According to <a href="http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes" target="_hplink">Mayo Clinic</a>, antidepressants, blood pressure medications and arthritis treatments are also frequent offenders.

 
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