Life With Trich

It all started as picking a few split ends- looking at the ends of my hair, separating the splits, and moving on with my life. Fairly harmless, almost every girl does it sometimes (I know, because, I asked like every girl in my life as I was starting to get worried that this was more than just picking my split ends).

Very, very, quickly, it escalated to picking more than “a few” split ends, to picking every single split end, creating new split ends so I had something to pick, and ultimately to pulling out the whole strand of hair. I did this so that when I picked the splits off of certain strands, those now-shorter strands would not stay in the mix with the rest of my hair. I did not want my hair to look noticeably shorter, so I figured that eliminating the entire strand would leave me with just the longest hairs on my head. I aimed for the coarse strands, the pieces of hair that didn’t feel like they belonged. Then, after every semi-undesirable strand of hair was extracted from my head, I guess I dropped my standards, and started to pull out any-and-all strands of hair.  As long as no one knew what I was going through, it was fine.

Eventually, I went to a therapist to talk about the anxiety that was always present in my life, and start to discuss the hair pulling. At that point, I had never heard the term trichotillomania, I did not know there was a disorder where people pulled out hair from any part of their bodies, and I was most concerned with what other people would think of me. This is a problem. No one even knows what Trichotillomania IS.  After all, I was a junior in high school - a time where I felt extremely judged and knew that introducing trichotillomania into my identity would not be a good move for me. So, I silently sat in classes, at home, in the car, and even walking around in public, picking my hair endlessly, despite my friends’ and family’s tireless efforts to try and get me to stop. I ended up getting angry with anyone who told me not to pick my hair, tried to help me ease away from the habit, or even comment on anything regarding the hair pulling.

By getting angry with everyone who loved me, I started to feel immense guilt. I hated myself for trichotillomania, and I hated myself for hating everyone. In my eyes, I was a horrible person. I thought, “Everyone is trying to help me, my support system is infallible, and here I am: pushing everyone away, silencing their concerns, and ignoring their efforts to help me. “

It was fine, until my hair was noticeably shorter in some areas than others, there were bald patches, and my beautiful hair was the farthest thing from beautiful every time I looked in a mirror. Mirrors became the enemy. I had to resort to a wig at the beginning of my freshman year in college. There I was, trying to make friends, generate a group of people who I felt comfortable with, and succeed in my classes, when I had to explain my disorder to everyone I came in contact with. I developed a sentence to tell everyone:

“I have trichotillomania which is an anxiety disorder that causes me to pull out my own hair. My real hair is very short, so I wear a wig to feel more comfortable.”

I said nothing more, and nothing less, for a very long time.

Wigs are absolutely, positively, horrific. They induce sweat on your head, they are itchy and uncomfortable, and no matter what, you are acutely aware that there is a wig on your head. Walking outside is no longer commonplace, as the wind could be a reason to stay in that day. As if a person prone to depression and anxiety needed another reason to stay in and stay away from responsibility, here it was: a wig that I never thought I would be wearing.

The worst part is, as much as I hate the wig, it is my ultimate security blanket. No matter how much it irritates, annoys, and makes me feel less “normal,” it is still the sole reason I can go out in public and not feel entirely ashamed of my disorder.

 

Flash Forward to Spring Semester Sophomore Year:

Here I am. One of the top students in my Nursing Class at Rutgers University, part of a great network of peers who know of my struggle, accept it, and move on, my mother’s undying support, and my therapist, Michelle.

I wish I could say I am doing better. I wish I could say that my real hair is growing back steadily, I am leaning towards the elimination of wearing a wig, and therapy has been largely helpful.

I am not. My hair is worse than it has ever been. I have destroyed about 10 wigs that my mother pays for, even though she cannot really afford them and did not sign up to have an extra expense every few weeks when I have destroyed yet another wig by picking at it.  I cannot sit in classes, as it is hard for me to focus when all I can think about is ripping hairs from my head.  I am constantly aware that pieces of my natural hair may be poking through my wig, and it causes me crushing anxiety in my chest – but why? How can I learn everything I need to know to be a good nurse and help people in the future, when all I can do is fall victim to my disorder?

Every morning I wake up and remember that I don’t have my hair anymore. What was once thick, beautiful hair that was complemented by every hair stylist I went to is now thin, patchy, short, unhealthy hair that I have systematically created with my very own fingertips.

 

According to the DSM5, trichotillomania (hair pulling disorder) is most commonly characterized by:

  • Recurrent pulling out of one’s hair, resulting in hair loss.

    • Check.

  • Repeated attempts to decrease or stop hair pulling.

    • Check.

  • The hair pulling causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.

    • Check.

  • The hair pulling or hair loss is not attributable to another medical condition, such as a dermatological condition.

    • Check.

  • The hair pulling is not better explained by the symptoms of another mental disorder.

    • Check.

Wonderful! So, I fit into the DSM5’s characterization of trichotillomania…so now what? To begin with, it is a rare disorder that has not been seriously categorized into the DSM5 in the first place– it exhibits symptoms similar to disorders on the OCD spectrum, it exhibits symptoms similar to a tic disorder such as Tourette’s Syndrome, and it is entirely open to question. The Trichotillomania Learning Center does an excellent job attempting to disseminate information about the disease, provide resources for families of people who have trichotillomania, give detailed information about trichotillomania studies that one could participate in and more.

But, no one talks about the differences that every sufferer experiences. I have seen countless articles, blog posts, videos, and forums by people who are going through the same thing I am going through: trichotillomania. But I have noticed that I cannot relate. Much of my trichotillomania is characterized by intrusive thoughts that I cannot get rid of, even if the thoughts are unrelated to hair pulling.  It is an individual struggle, and although having a support group of people going through the same challenge as you can never hurt, it is something that you must resolve within yourself. Easier said than done, though.

No matter what my therapist does to help (and I do love my therapist), I end up realizing that all of this is in my own hands –both literally and figuratively.

Some days, I can come up with methods to help pull my hair as least as possible. For example, my therapist and I have developed a method where whenever I pull my hair, I try to stop within one minute, and if I can, that’s a success. It’s all about the baby steps, celebrating the small victories, and realizing that this is not a competition. I have all the time in the world, but unfortunately, it is at the cost of my hair’s appearance. I would love to say I do not care what others think of me, but of course I care – who doesn’t, in this society?

Other days, I’m not so lucky. From the minute I wake up, to the minute I go to sleep, all I can do is pick my hair. I don’t even necessarily feel anxious, leading me to pick my hair for solace. I could feel totally fine, and still be unable to stop picking my hair. All I can say, is it’s a mean disorder.

I have been prescribed medications from psychiatrists, but all it does is make me feel nothing. The only thing worse than feeling too much all the time is feeling nothing. I was a zombie, I was not me, and even worse, I was still picking my hair just as much. Then, I discovered that marijuana does wonderful things for trichotillomania. It was the best moment of my life – but it’s illegal. Starting in June, I will not be able to smoke marijuana, as I have to pass a drug test for nursing school. Of course, I value nursing school more than anything right now and do not mind stopping smoking marijuana – except that with that, comes the elimination of my only solace from this mean disorder- and I’m sorry, but I just don’t think that’s fair to me.

Sometimes, I want to give up. Like when I went home for Spring break this year, and my father repeatedly told me and my mother that I am the cause of every problem in the house, that I am crazy and everything upsets me, that I blame my mental disorder on everyone else, and that pulling my hair out of my head is absolutely preposterous. He did not use the word preposterous, however, as he does not have very much intelligence, clearly. I wanted nothing more than to just die. When your own parent, one of the two people who makes up your genetics rejects you because of your disorder that you DID NOT CHOOSE TO HAVE, you lose hope. I will never be able to go home and enjoy myself knowing that a person who created me rejects me.

Other times, I feel extremely empowered. I am in a position where my struggles can help me educate, inform, and enlighten others as to what mental disorders can really be like. I am not a textbook definition, I am not my father’s perception of mental illness, I am not “the crazy friend” and I am not any less of a person because of my disorder. I am not Trichotillomania, Trichotillomania is not me. I see myself one day, giving speeches without a wig on, telling young girls and boys that are going through mental anguish that it will get better. But, for right now, I am weak, I am vulnerable, and I need help. It is not just me – there are millions of us, too scared to speak up about what we are going through, too aware that we will be judged by the generation that precedes us, too knowledgeable about our own illnesses that we will not listen to the ignorant solutions presented to us by people who we grew up being taught to respect and too scared that nothing will ever change for the better.

People have asked me what would be my advice to someone who is going through trichotillomania. It’s a hard question. It’s a disorder that makes me wish I were dead half of the time. It’s a disorder that makes me uncomfortable in every situation. A disorder that does not allow me to casually go swimming, go for a walk on a windy day, or go on a rollercoaster- because I am too ashamed of who I am when I am not wearing a wig. I am working on it. I will try to leave my room without a wig on. But, I am not ready yet. I am learning that that is okay. I don’t have to be ready until I just am. My advice would be to keep your hands busy, do what you love as much as possible. Art therapy is magnificent, marijuana is magnificent (I am not ashamed to say it), typing, writing, and cleaning are all great things to keep your hands busy. If you cannot pull your hair, you will not pull your hair (like if I am speaking to a Dean, professor, or potential employer). But unfortunately, most of the time, you can, in fact, pull your hair – and that is the most dangerous part of the disorder: the idle hands.