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Trichotillomania Acceptance

“You can't stop the waves but you can learn to surf." -Joseph Goldstein

Liberating Exhaustion

I’m not going to pretend like there aren’t some shitty things about trich. It causes shame. It causes guilt. It causes a lot of embarrassment. I’ve been there.

Before I started pulling, I’d rub my mouth against the hair on my legs and arms. I’d run my head hair through my lips. I’d play with individual hairs on my eyebrows. It was like my brain had this massive craving for something but I had no idea what. I had no idea what this seemingly instinctual, overwhelming craving was until I pulled that first hair.

This is why I don’t believe it’s merely a habit. In fact, I hate that word in regards to trich.

The definition of a habit is,

“A settled or regular tendency or practice, especially one that is hard to give up.”

With the definition, it makes sense why my old counselor insisted it was just a habit, but I still disagree. If you don’t brush your teeth twice a day, that can develop into a bad habit. If you eat right before bed every night, that can develop into a habit. If you work out every day, that can develop into a good habit.

This feels like more than a habit. There is some unknown reason my brain needs this and nobody knows what that is, and it was there even before I pulled that first hair.

I started pulling when I was 13. Some people had been telling me how bushy my eyebrows were and how I should pluck them. It was around that time where I started caring about being pretty. I remember being worried it was going to hurt. I had a moment of motivation and I finally took a pair of tweezers, went into the bathroom, and pulled a hair. It wasn’t painful. It was one of the most relieving feelings I’d ever experienced. Some seemingly unknown force took over my hand, my eyes and my motions. Suddenly, I was no longer in control of my eyebrow grooming. In the same moment I wanted to groom myself to appear more attractive, I pulled out every single hair. I went from feeling euphoria to a sudden, devastating panic.

If you don’t have trich, just imagine your hand suddenly starts ripping your hair out and no matter how much you say, “Ah, stop!” or “What are you doing?” you can’t stop. That’s exactly what it is.

I thought I was crazy. I thought I was alone. I just wanted to hide and never been seen again. I managed to draw on some horrible looking eyebrows with an old eye pencil I found at the bottom of a drawer.

A year later was when I started pulling at my eyelashes, and it was met with the same shock and panic as the first time I pulled from my eyebrows.

I hid it from everyone including my parents and closest friends. I wore fake lashes every single day (Which was a pain in the ass), I kept my head down at school and in public places. I found I couldn’t even talk to some people for fear they’d notice. If anyone asked me why my eyebrows looked like shit or why I was suddenly missing eyelashes, I’d become overwhelmed with anxiety and embarrassment. I’d say, “What do you mean?” or “I don’t know what you’re talking about.” Every single confused look I’ve ever gotten is permanently engraved into my memory. I continued hiding for a good 7 years until I started pulling from my scalp.

I decided that hiding it was fucking exhausting.

While it’s difficult to do so, I’ve learned it’s so much better to just say, “I have trichotillomania which causes me to compulsively pull out my hair out.” They may not understand, they may have a lot of questions, they may give you a weird look, but there’s relief in knowing you’re not hiding something that has such a big impact on your life. The understanding and amount of support from opening up can also be a surprising weight off the shoulders.

Opening up to others and being honest about trich was one of the best things I’ve ever done for myself. Only then was I able to truly start being comfortable in my own skin again and was the thing that ultimately lead me to being able to accept it.

The problem is, there are still people out there who think they’re crazy and alone. Opening up and spreading awareness is extremely important, and can benefit not only you, but others with trich too.

-Ann

Featured post

Mental Illness and Behavior

Many people feel that those who are mentally ill cannot be held responsible for their actions. This is kind of a gray area and for me and depends on whether or not the person is aware that they have a mental illness.

On one hand, if they’re not aware of it, how could they possibly be held responsible for their behavior if they don’t know it’s wrong? I understand that.

On the other hand, If someone has been diagnosed, gone through therapy, and talk about their mental illness on a daily basis, they’re aware of it and therefore should at least try to take responsibility for their own actions. It shouldn’t be used as an excuse to hurt someone else and they’re not entitled to special treatment by every single person they meet just because they have a diagnosis.

If you’re reading this, I’d love to hear your thoughts.

Another New Beginning

Sometimes I feel like I should just fill this blog with inspirational quotes and funny uplifting web comics because there’s really only so much you can say about a single topic. I suppose I could go off about other things every so often. I just don’t see the point in starting another blog that’s just going to end up sitting there for weeks at a time. I might as well just throw it all here, for trichy readers to (hopefully) enjoy, whether it’s about trichotillomania or not.

I had the most intense pulling episode I’ve had in years. About a week ago I pulled out the entire top half of my mohawk and ended up with a shopping bag full of hair! I didn’t know whether to cry or be impressed with myself.

After that I was torn between two different thoughts.

“Holy shit! I was able to see 9 full months of hair growth!”
and
“How sad, I just ruined 9 full months of hair growth.”

I went through so many emotions and cried so much when it happened, but since then I’ve decided to focus on the first thought because dwelling on the hair loss won’t change anything.

I did get a nice new synthetic lace front wig. It’s a different color than I’ve been going for and it kind of makes me look like a different person. Sometimes you just need a change. For anyone interested, I got it here: http://stores.ebay.com/Wild-Hair-Emporium

Ten Minutes of Weakness

Trichotillomania causes mixed thoughts. On one hand, I really want hair. On the other hand, a loss of some hair shouldn’t control my life, my decisions, or my emotions. Either way I’m in a constant argument with myself.

After over six months of regrowth, in just ten minutes I have a new little bald spot. My immediate reaction is, “Fuck.” …as expected.

It makes me feel like shit, if I’m being honest, and it’s not the only bald spot I have in this mohawk.

This is what I was avoiding the entire time I kept my head shaved. I’m done avoiding it and I’m not going to cry over it. I also don’t think it warrants shaving my head again quite yet. I’m just going to finish writing this and move on with my day. There are more important things to focus on, right? I have bald spots…so what?

Empathy

I’ve had trouble writing lately because there are other things on my mind besides trichotillomania. I’ll try not to get into too much detail here, but I’m always able to find parallels between everyday life and this disorder. Sometimes everyday life helps me to understand trich, and sometimes my journey with trich helps me to understand other things in life. In this way, maybe this weird disorder can be looked at as kind of a blessing.

I really feel that trichotillomania has given me an intense curiosity and wanting to understand things I initially don’t agree with. Maybe partially because what I deal with is often so misunderstood.

My hair/lack of hair and the fact that I pull it out often makes me feel like a weirdo. As such, I enjoy other weirdos. People that come across as perfect tend to scare me away. At the same time, whenever you actually get to know someone, you learn they’re a weirdo too. We’re all weirdos and I mean that in the most loving way possible. Everyone is different.

Empathy is the ability to understand or share the feelings of another. I feel like the world as a whole is lacking empathy and critical thinking. It’s possible that it has always been this way, but now we’re now at an age where everything is documented and can be seen/read/heard from the palm of your hand. It’s amazing, really.

I think it’s important to be able to read something you don’t like and say, “Okay why are they saying this? Is it based on fact? Why does this person feel so strongly about it? What lead up to this person wanting to voice their opinion?” While your initial reaction might be based on fear or hate, it’s possible to put that aside to be able to learn and gain more of an understanding- in which case that initial reaction might be dissolved and emotion will be met with logic. You can listen without having an emotional reaction.

At what point do you decide you do/don’t agree or aren’t going to tolerate something and move on? I can’t answer that, but keeping an open mind is important whether you agree or disagree with whatever this hypothetical thing is.

I’m getting way off track here and not sure I’m even making any sense. When it comes to trich, empathy will help you to understand why some people ask, “Why would someone do that?” or “Can’t you just stop?” and even understand why some people say “That’s crazy/stupid.” The simple answer is that from their point of view, pulling your hair out doesn’t make any sense! They haven’t experienced it and that’s okay. While it would be great for awareness and research, not everyone has to understand. At the same time, you can have empathy for yourself. Your hair pulling is caused from a disorder that has no cure- The loss of hair is never the intention and it’s not your fault.

I Don’t Always Want To Accept It.

I started this blog because I try my best to accept the fact that I pull my hair out and I know it’s not something that’s just going to magically go away. I try my hardest to stay in that mindset and I want to share that with others because that’s when I feel most in control. It’s what allows me to be comfortable and happy in my own skin. If I own it, it can’t hurt me. If I have a disorder and it doesn’t have me, I win. Logically, it’s the best mindset to have.

If I’m being honest, sometimes I don’t want to accept it.

I still get angry over finding a pile of hair in my bed.

I get sad over the fact that I have a new bald spot.

I get embarrassed when someone notices I’m pulling.

I find it incredibly frustrating that I have to wait weeks or months to see regrowth.

I hate that everyone can see the damage.

I can’t stand when my eyebrows are uneven. (and my trichy brain insists they have to be even until I pull more.)

I hate it when I have a new gap in my lashes and I don’t feel like I can wear mascara because that’ll bring more attention to them.

I get absolutely devastated when I’m suddenly without any lashes or brows.

I get jealous over long hair.

I get angry when people tell me they’re having a bad hair day.

I hate the fact that I hide and just want to be alone because the damage has caused so much anxiety that I have trouble talking to people or looking them in the eyes even when I HAVE hair.

I still get the smallest urge to say, “Oh fuck you” when someone says they’re so angry/stressed they’re going to pull their hair out.

The “Raise your hand if you still have real hair on your eyebrows” memes floating around the internet still sometimes make me want to flip tables.

It’s not always the hair loss or the time lost, it’s when you realize you had 30 minutes of weakness and because of that you’ll have to wear your lack of self control on your fucking face for the next few weeks, and that’s assuming you can stop pulling long enough to see regrowth.

Everywhere you go and everything that involves women surrounds long, beautiful hair. Every commercial, every ad in a magazine, every website, every book- EVERYTHING surrounds long, thick, beautiful hair and how to keep it that way. It’s often what is expected when it comes to beauty and sometimes I hate it. I hate it with a passion.

I often wonder what these women would do if they suddenly didn’t have it any more. What would they do if they went to put on makeup and realized their eyelashes were gone? Would they feel the same rush of panic that trichsters do? Would they cry? Would they even be able to leave the house? What about looking people in the eyes? Would they still want to be intimate with their partner?

Nobody cares about trichotillomania unless it happens to them or someone close to them. Nobody cares about research or donating hair to people who lose it because they pulled it out. That’s crazy! That’s stupid! They did it to themselves and it’s not due to medical hair loss. You can’t even get a wig if you’re over the age of 18 because it’s not due to medical hair loss. They often don’t even try to understand. It’s always,”Why would you do that?” or “Doesn’t it hurt?” or “Just stop!” or “You’re going to go bald.”

The guilt and the shame is constant.

….Now that I’ve had my purely emotional rant, I think it’s important to say that acceptance means accepting the fact that hair is beautiful. It’s accepting that I will have these feelings sometimes. I will get angry. I will get upset. I will get jealous.

All of these thoughts and feelings and emotions are just a part of the disorder. You can accept them along with the hair pulling. 

It’s what you do with these things that matters. One thing that really helps me is practicing mindfulness and empathy. Mindfulness helps me to be able to step outside of myself and realize that thoughts are only thoughts. They don’t represent reality. Empathy allows me to be able to see the world from another’s point of view- it’s helpful to know that those without trich don’t have to understand, and they might have a whole list of things that causes their own seemingly ridiculous thoughts, feelings, and emotions.

It’s also extremely important to remember that you can always, always turn something that causes you pain into something positive. There’s always a way.

-Ann

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Taking Responsibility

If you go into online support groups, you’ll often find they are littered with trigger warnings or people insisting that the person who shared add a trigger warning.

I often say, “That light triggered a migraine,” or “This situation caused a panic attack.” and then I deal with it. When it comes to trich, it’s often taken too far and instead of a THING causing you a reaction, the blame is put on a person. In a support group, it implies that your reactions are the responsibility of someone else- often times someone who doesn’t even know you. This is why the word is often mocked.

Whatever the case may be, if something bothers you, you should take responsibility for yourself. While you may not always have control of your initial reaction to something, you have control over how you handle it. You could, oh I don’t know- Hide the post. Walk away. Do something else. Use your resources.

We live in a society where people are way too sensitive. Just because you deal with a BFRB doesn’t mean that you’re entitled to special treatment.

While I’m on the subject, there are a couple of things that are often upsetting to trichsters.

“I’m so angry I’m about to rip my hair out.”
“Raise your hand if you still have hair on your eyebrows.”

Although the first one may contribute to the myth that hair pulling is only caused by extreme stress and anger, it’s only a figure of speech.

The second one is just stupid. Congratulations, you have eyebrows.

Either one of these can be seen as an opportunity to spread awareness. There is no need for them to affect you in a negative way.

-Ann

The TLC Foundation for Body-Focused Repetitive Behaviors

TLC is a wonderful resource for people who have trichotillomania and/or other BFRBs, and anyone who wants to learn more about it.

They offer a lot of awareness materials like bracelets, ribbons, and brochures. They host an annual conference which brings a lot of us trichsters together. (Someday I’ll be able to go!) as well as offer a lot of outreach and support.

With that said, and with much love for TLC, I’d like to touch on something that I feel is important.

They offer a list with the title, “50 ways to stop pulling your hair.”  https://www.bfrb.org/learn-about-bfrbs/treatment/self-help/104-50-ways-to-stop-pulling-your-hair

I often get this list in the mail when I order anything from TLC.

So, there are some good things about this.

“Last but not least learn to love yourself. Only then can you start to heal.”
“Keep a journal of your feelings.”
“Help others, which in turn will help you.”
“If you pull some hair do not beat yourself up about it, just try again.”
“Be patient with yourself.”
“Join a support group.”
“Have a positive attitude.”

These are all wonderful suggestions if they’re out of context, but the whole point of this is “How to stop.” and I’m concerned it makes a complex disorder even more confusing for those who have trich and for parents of children with trich. There are a lot of words in there that are damaging.

“Take a long bath to ease the anxiety.” Again, great suggestion out of context, but it adds to the misconception that anxiety is always what causes pulling.

“Imagine your life without Trichotillomania and with hair.” This one will just make someone dealing with severe pulling feel like shit. Even if it is helpful to stop pulling, just because someone doesn’t pull for awhile doesn’t mean they’re ever going to be free of trichotillomania.

“Place notes that say “NO” or inspirational sayings about stopping hair pulling in places where you normally pull.” …..This is called shaming. This is what a parent will often do to get their child to stop pulling and it’s just as damaging to say it to yourself. Saying, “NO” to myself has never made my pulling any less severe…it just makes me feel worse about it at the end of the day.

“Lift weights. Your arms will be too tired to want to pull.”…..Bullshit. Some people have pulled to the point of injuring their wrist/arm/neck. It may make your arms tired but it’s not necessarily going to stop pulling.

“Pet an animal. Sometimes just running your hands through a pet’s fur can stimulate the same sensation that you need in order to ease anxiety.”…..Again, therapeutic maybe, but what if your urges aren’t due to anxiety?

“Take pictures of your bald spots and post them where you usually pull. When seeing these pictures you will not want to pull since bald spots are frightening.”…..Shaming, again. Yeah, looking at your damage constantly is going to scare you out of having a disorder! Tah-dah!

“Tell your friends and family to tell you to stop if they see you pulling.”….If you pull in public places, sure- bringing awareness to it can help in the moment…but we tell ourselves to stop all the time. It doesn’t work and someone else telling us to stop can add to the unnecessary embarrassment.

This is all 100% my own opinion, and doesn’t mean I appreciate TLC and what they do any less. It’s just an honest perspective. My concern is that people will go through this list, try everything, and still feel like shit about their bald spots. Eventually these things can be damaging and even make pulling worse. Trying not to pull can become all consuming and turn into an obsession. You are not your hair or lack of hair. The expectation to stop something that little is known about and that DOES NOT HAVE A CURE is ridiculous- and it’s everywhere. I’m not saying don’t try or that these aren’t worth trying, but the whole point of this is to illustrate why there is a great need for more focus on accepting it and knowing you can still live a happy life with it. The dialog about stopping is so intense and in your face when it comes to trichotillomania that people have contacted me and they could not grasp the concept of acceptance. There is something wrong here.

-Ann

Making The Best Of It

While there are treatment options, there’s still not a cure all. I will touch on this more at a later time.

I’ve gotten to a point many times in the last ten years where I’ve tried to gain some form of control and ended up shaving everything off again. If you’re going to shave it, you might as well get creative and have a little fun with it.

I was watching Sister Wives one night (Shut up! It’s good, okay?) and a counselor on there said this,

“Whenever we can be able to laugh about something that has been traumatic in some way, that’s healing.”

I immediately thought about my experiences with trichotillomania.

Allow me to introduce the headstache! When I did it, it made me laugh at a time when I was feeling down on myself. I only had it for a few hours, but now instead of looking back on a time where I couldn’t stop pulling, I can look back and see something positive and funny.

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