Trichotillomania

I have a condition called Trichotillomania; it's classified as an impulse control disorder. That classification may actually explain many other things about me.

Having trichotillomania, means that I pull out my hair. I currently wear my hair up to prevent myself from pulling even more.

I've had trichotillomania since I was five, when I began pulling out my eyelashes and eyebrows. Around the time I hit puberty, it got worse...I remember looking at the hairs on my head and thinking, "Wow, there are so many of them - people wouldn't notice if a few were missing."

Before I knew it, I had such a bald patch on my head that I could place my entire hand down, starting at the hairline on my forehead and not touch where my new hairline started.

After that, there was no stopping the trichotillomania. I was 12, in grade six - children were not nice. Even the people I called "friends" would chirp in behind my back. I understand - everything was about fitting in back then. I think the only friend I never heard chirp on me is my best friend since grade one. Maybe because she had her own issues bugging her, she understood. Whatever it was, it was nice knowing she was - and still is - there for me.

By the time I hit high school, I was able to manage my hair. I had a nightgown that was so thin I shouldn't have worn it anymore; it was perfect because it would only let the little prickly hairs through. This was my Achilles heel to hair-pulling and would keep the long ones safe from my fingers...

I then discovered that make up could hide some of the effects of having a bald face.

I should probably jump back and let you know that my parents tried everything they could, except putting me on medication - they didn't like the idea that their child may take a medication that fucks with the brain. Eventually, I think, they ran out of ideas to help and gave up. I can't blame them; when they would ask me about missing patches of hair, I would lie.

It was embarrassing to know that my hair pulling was so obvious. Oh, and the looks that strangers would give! Some of shock, some of confusion, some concern mixed with pity, and others were full on horror.

There was a point not too long ago where I just came to accept that trich was going to be with me forever.

Like many other conditions, this is NOT easy to live with. Something that I did come across within the past year was research saying that antidepressants have been known to reduce or completely STOP this disorder. Therapy may work, too.

I tried therapy but I just couldn't seem to stop myself. I've freaking yelled at myself and I can't stop it! I do it because it's calming, and I get a good feeling out of it.

I've tried replacing the compulsion, but nothing replaces the feeling of pulling my hair, nothing at all. After thinking about it for a few months and going through a year-and-a-half-long stretch of pulling quite badly again, I decided that trying medication might be the best thing for me. I went to the doctor and he put me on an antidepressant. I was told to give it six weeks to fully take action.

Wouldn't you know it, it fucking worked!

After three or four weeks I noticed that I was hardly pulling, and when I would, I was able to say to myself, "Hey. Stop it! You don't need or want to do this...go do something else!" AND I DID! I drastically reduced my hair pulling for an entire month!

Unfortunately, there were side effects: my emotional range became limited to very happy, very angry, or uninvolved. I had very little emotional response, unless it was super happy or livid.

Then I became sickened by even the thought of anything sexual. A kiss, a sensual rub, a playful touch made me feel ill. I talked to my doctor, and after it didn't go away, we figured it was best to stop the medication. I would rather love my husband and fully enjoy my children than stop pulling my hair!

The pulling came back with a vengeance! I had one spot nearly grown in, but within two weeks I had one large spot and three smaller ones. My eyelashes were almost grown in and before I knew it I had missing patches and thinning eyebrows.

Despite this, I figured that I had almost stopped once and I should be able to do it again on my own. It only hit me that I couldn't when, one day, putting my hair up didn't hide the large bald spot.

Back to the doctor I went - I was afraid that this time the spot would encompass my entire head if left unchecked. Unfortunately, after seven weeks I have seen no improvement. I have no self control, no growth, and I am always tired and nauseous. My sex drive has increased, but I have also gone back to thinking about previous events in my life.

Should I risk going back to the first medication and becoming mostly emotionless and sickened by the thought of sex to stop my hair-pulling of 21 years? Or do I go on to the next drug and hope it works?

The first thing I plan is talking to my husband because he was greatly impacted by my reactions when I was on them. Then I will be talking to my doctor again.

I really just want this hell to be over. I want to go and get my hair dyed and cut, and I would LOVE to wear my hair down in public again! It would also be lovely to see what I would look like with all my eyelashes and eyebrows. Maybe I would be the kind of person who looks great even without make up.

I've had a LOT of time to dream about what it would be like to look normal again...

It is estimated that up to 5% of the U.S. population is afflicted with Trichotillomania.

This is her story:

I have a confession.

It's a small obsession. Okay, it's probably not that small, really, but when I say it, it's going to sound like I'm trying to be funny.

Bear with me, I'm not.

I'm obsessed with my hair. I don't mean that in the way you probably think that I do. The only haircuts I ever get are at those chain salon franchises. Seriously. That's me. $12 haircuts. Only a few. I go months without a trim. It's just how I do.

Anyway, my "obsession," as I am referring to it for the moment, is related to my anxiety. And I have loads of that.

Although not officially diagnosed, I think I might have a mild case of trichotillomania - an impulse-control disorder.

So what does this mean to me?

I'll tell you.

Trichotillomania is a condition in which someone pulls out their hair from various parts of their body. I've never had a bald spot, but I could probably create a small wig with the amount of hair I've pulled out when anxiety hits.

I honestly don't think I'm pulling it from my scalp, but usually tugging at the random strays that are going to fall out anyway. I have quite the head of hair, and it's still there. The whole lot of it.

I tend to pull out my hair when I'm anxious - especially when I'm a passenger in any sort of vehicle. I'll roll my window down briefly to toss a small twist of my now-free strands of hair into the universe.

I think it started ages ago, when took the bus to work. It was an hour long commute and I would spend my time focusing on my split ends. This was back in the day when my hair was much longer and haircuts were few and even farther between.

I'd pull nearly every split end that the sunlight caught before we hit the tunnel. And yes, I've gone so far as to become fascinated with an eyelash in my eye, then tugging a few too many lashes out.

That's my confession.

It's not to the point that trich impacts my life - I live with it as though it's part of who I am. A habit, maybe?

But I feel like I need to say something. I'm not sure why, exactly, or what prompted me to do so right this instance - but I needed to do it.

I'm not looking for an immediate solution - just trying to promote some awareness about Trichotillomania. You really never know what people are going through behind closed doors. You never really know when someone is holding in anxiety that could tear them apart if they let it.

Support them.

Listen.

Just be there.

Sometimes that's all anyone really needs.

Many of us have times when we're tempted to pull out our hair. Most people don't act on those temptations.

I do. I have trichotillomania. I've had it since I was very young.

No two cases of trichotillomania are necessarily alike. For me, it's something I do without thinking. If I realize I'm doing it, I can stop. Some people pluck eyebrows, eyelashes, and other hair sources, but I only pluck the hair on my head. 

Trichotillomania is thought to fall on the Obsessive-compulsive disorder (OCD) spectrum. It is an impulse control disorder and is related to stress and anxiety. Everyone has stress and anxiety, and there are times in all of our lives when stress and anxiety are more of a problem than others.

I'm pretty sure I started pulling my hair out when I was a baby, which means I've been doing it for as long as I can remember. Most days my mom didn't get me up in the morning or from my nap very promptly because she was busy with my twin brother. I believe I started pulling my hair as I waited for someone - anyone - to take me out of my crib.

My intention here is not to demonize my mother, but to try to help you understand how this started.

My mom lost preemie twins a little less than 2 years before my brother and I were born. When my twin and I were born, he was 6 pounds and 9 ounces, while I was 2 pounds and 2 ounces.

He was a roly poly baby. I made my mother nervous. She bonded more with my brother initially. Eventually my mother and I bonded too, but by then, I was already pulling out my hair on a regular basis.

School was, for the most part, a place where I was happy. I succeeded academically and was usually treated well by teachers and peers. One event, which happened multiple times each year, left me disconsolate each time it happened - head lice checks. 

Head lice checks made my hair pulling worse. The ladies checking my head were so insistent that I had lice that they usually convinced me I had them, and I would pluck hairs out of my head at two to three times the rate I normally did. I would then check each root and all along each hair shaft for the presence of a nit. I never found one, though, which was most likely a very good thing because the pesticide shampoos probably would have been very painful on a scalp with so many open wounds.

The person checking heads would almost always be so horrified by the condition of my scalp that she would call my mother to leave work and come get me. I can remember sometimes hearing my mom's voice even as someone from the school nursing staff talked to her on the phone. She'd plead with them and insist it was normal for me, but they would want her to come to school despite her protests so they could show her what they were talking about.

She already knew, but she came anyway because she had no choice.

One time as my mom was taking me home and looking at my pock-marked scalp for probably the tenth time, a school nurse very condescendingly said, "For God's sake,you're a psychologist and your husband's a doctor. Why don't you do something with her?"

My mother shrugged as she walked out with me. Once we got inside the car, she began to cry. I recall just sitting there on that November day as my mom sobbed into the steering wheel of her car, thinking what a horrible person I was to make her feel this way.

Even though in some ways both my brother and I were like the proverbial peddler's children who ran around barefoot in relation to our own parents' professions, in fairness, they had taken me to my pediatrician, an allergist, a couple of dermatologists, an equal number of psychologists and psychiatrists, a naturopathic physician,  and even a pediatric neurologist.

There didn't seem to be any fix that would not have left me virtually comatose and drooling. When the cure is worse than the disease, sometimes you have to live with it. They never gave up trying to find a cure, though.

For a while, my mother even made me drink goat's milk because a lady at church swore by it as a cure for plucking, picking, cutting, and all manner of self-injurious behaviors. Mom and Dad eventually gave up on goat's milk because I was suffering from both dehydration and malnutrition. I couldn't keep any food down if I had to consume goat's milk along with it.

The goat's milk didn't seem to slow the hair pulling anyway.

When I used to get my hair cut, the person cutting it would invariably comment on the condition of my scalp. I never knew what to say in return.

I would beg my mom to cut my hair herself. But she always refused, which may have been her way of punishing me for pulling my hair out. My mom used to talk about how nice it feels when her hairstylist shampooed her hair. I didn't know if she said it because she thought it might motivate me to stop pulling my hair, or if she said it to make fun of me because she knew no one would ever willingly touch my scalp. 

I wear my hair long and trim it myself now.

I can remember my problem with hair pulling worsening when my mom was battling leukemia. It was also bad when I suffered PTSD after I was assaulted in a school restroom a couple of years ago.

I've just finished my first year of university. Things happening around here right now have caused me to stress.

I'm recovering from a minor car accident that left me with broken ribs, a broken collarbone, and awful bruises in unmentionable places.

There's little I can do other than watch bad TV and pull my hair out.

The moment I started writing this post, I knew it was going to be hard. Not because I was writing about a dark subject or a long-held secret.

No, the reason why this post was hard for me to start is because I didn’t believe that I deserved to write it in the first place.

When I first thought about the theme of “I Overcame," I surveyed the topics I could choose.

Well, I could write about overcoming depression. Yeah, that's something that people can relate to. I smile now…that’s good right?

But, wait. Wasn’t it just this weekend that I spent two days straight inside, under the covers with no desire to do anything but cry and watch YouTube videos? 

So, nope, can’t do depression.

Okay, so maybe I could do overcoming an eating disorder. I’m definitely at a “normal” weight now. My total daily calorie intake is a four-digit number. I haven’t fainted from hunger in a year. Surely that means I’ve overcome it, right?

But then I remember that all I ate today was a banana and some popcorn. On purpose. And how I love the feeling of being hungry because that means I’m in control. And how proud I was to wear size 4 pants which were too small a couple of months ago. And how I then thought “Okay, that’s great, now get to a size 2.”

Screw overcoming an eating disorder. Not there yet.

*Humph*

This is frustrating.

What else?

Trichotillomania? Nope – still pulling out that hair!

Medication compliance? Nuh-uh. I have to email my therapist every single day to tell her I’ve taken my medication because otherwise? I probably won’t do it.

Fear of abandonment? Yeah, right.

The list goes on and on. For every single struggle I can come up with a reason why I don’t deserve to claim that I’ve overcome it.

The definition of “overcome” is: To defeat (another) in competition or conflict; conquer.

All right, so I haven’t completely defeated my demons. I haven’t conquered them…yet. But I am certainly fighting a hard battle.

And you know what? THAT COUNTS FOR A LOT.

SO WHAT if I've slipped up? WHO CARES if I still have behaviors I’d like to get rid of? I am WORKING ON IT and that’s what counts. I can still give myself credit for all of the hard work I’ve already done.

So, here I am setting the record straight: I have overcome a lot, just maybe not in the traditional sense.

I told those negative voices in my head to shut the hell up and let me write this post.

And it's done.

An Invisible Illness is a chronic, debilitating illness that you cannot easily see. Those with an invisible illness often struggle to explain their plight to others. They wind up feeling judged, misunderstood and alone. This month, we at Band Back Together are choosing to spotlight the silent, invisible illnesses.

Why?

Because we're tired of living in the dark.

Let's Band Back Together for Invisible Illnesses.

I didn’t think I have anything to contribute to this month’s “Invisible Illness” Spotlight Series.

I tend to do that – discount my experience as unworthy of sharing. But I was wrong.

I have trichotillomania. That's a fancy way of saying that I compulsively pull my hair out. Yes, having trichotillomania means that I PULL out my HAIR.

Thanks to The Band, I know that there are a lot of us “trichsters” – though I still can't get it in my head that I'm not alone.

Is it chronic? Yes.

Debilitating? You betcha.

Something you cannot easily see? At the moment, yes, thank goodness.

It happens when I’m anxious, bored, stressed, excited, depressed, or concentrating. Actually, let’s be honest: it happens any time I’m breathing.

My right hand instinctively goes to my head – my thumb and first finger pinch together to tightly grab a single strand of hair.

My fingers carefully survey the territory on my scalp. I feel for a hair that doesn’t “feel right." I want one that's crinkly, discolored, or lacks perfection. 

If I find one, it must come out immediately. If I don’t find one, I get increasingly agitated and frustrated.

Once I’ve found a suitable strand, I slide my fingers towards my scalp, careful not to lose it because that would be a disaster.

Right before I pull, I feel a surge of adrenaline. “This is going to be a good one, I can feel it!” 

I gently bend my fingers to put tension on the one hair, hopeful that it will come out with a little “pop”, which means that it took the root with it. Those are the best.

That “pop” gives me relief. The crinkly, imperfect hair is no longer on my head, but in between my fingers. For some reason that is pleasurable.

But the pleasure is automatically followed by shame, guilt and regret. The evidence of pulling is all over the floor.

Uh-oh.

Reality sets in when I look into the mirror – oh my gosh, what have I DONE!? I'm so ugly. Why did I do this to myself?

My mood plummets. I can’t go anywhere looking like this. I cancel my social plans for the evening and stay home wallowing in my misery. I pull more hair. 

Do I struggle to explain my plight to others?

That answer is simple: I DON’T.

I don't explain trich to others. I’m in the trichotillomania closet. The only person I’ve told is my therapist and we’re “working on it." It’s hard to talk to her about my pulling, because I'm so ashamed that I freeze whenever she brings up trichotillomania.

I feel judged and alone.

So many people twirl or play with their hair but they don’t pull it out. I feel like people who see me pull are thinking “That girl is stupid! Why is she pulling out her hair? Can’t she just STOP!? That’s the weirdest thing!"

I'm thinking “Don’t you think I would JUST STOP if I could?! People think I’m crazy. No one understands!” But all of those thoughts make me more anxious and ashamed, which just leads to more pulling.

Right now, I consider my trichotillomania an “invisible illness”. Right now, I can hide my problem spots. But if I keep pulling at this rate, hiding is going to be difficult.

Right now, my invisible illness is still invisible.

I hope it stays that way.