Over one hundred years ago, the name trichotillomania was coined by a French dermatologist working with a young man who pulled his hair.
In 1989,when I originally learned there was a name for what I had been doing for 20 years, I was overwhelmed. First with relief – OMG there’s a name and other people do this – then with Urgh – but WHAT a name. Makes me sound like I am crazy.
Today, twenty years later, I have gotten used to the word, and it no longer causes me any ruffled feathers. That said, I would still very much like to see a new named devised for the hair pulling condition, based on complaints I have heard over and over again.
Frankly, it is the “mania” part that most object to, as it leads to association with hysteria, psychosis, crazy – those kinds of assumptions. At least when it is discussed with someone who is not familiar with the term and all that it describes.
Two names being bandied about right now are “trichotillia” (simply dropping the mania suffix so it would mean Tricho -Hair, Till- to pull, ia- disorder, pathology in Greek)
and “Hair Pulling Disorder” (moving toward simplified English is a current trend in the diagnostic community).
I would love to know how any of you site visitors feel about it! Is this a battle worth fighting? Do we need to reframe the disorder with a new name? Or should we simply let it be, and work to change it in the future…
Looking forward to hearing your comments!
Love Christina
56 Comments
Christina,
I am completely in favor of a name change! I think it could be an opportunity to “rebrand” (sorry for the marketing-speak) of a disorder that is becoming more and more known.
By the way, did you know that “trichotillomania” was one of the words used in the California State Elementary Spelling Contest on May 16?
Personally, I’d opt for “Hair Pulling Disorder.” There is no question what that is.
Thank you for all you do!
Gary
P.S. Please feel free to check out my blog. http://blog.dosesofcomfort.com.
I too am in favor of a name change, though I have gotten used to it as well, “Trichotillomania” only serves to make it sound almost foreboding and definitely even more misunderstood It is difficult enough, at least for me, to explain WHY? I do it,never mind having to explain the name for it. Only those in the medical field and those who have the disorder, and our loved ones, even know what the word means!
“Hair Pulling Disorder” would get my vote, plain and simple, self explanatory. We spend so much time creating names and acronyms for things, why not just “tell it like it is”, so to speak. As Gary stated, there would be no question as to what it means.
I like Trichotillosis which I’ve heard in place of Trichotillomania. I totally agree with you about the “mania” part althought the first time I read Mania I thought of Hulk Mania and laughed.
If I had to choose between the two options above, I’d opt for Trichotillia.
Thanks for the great resources, I visit your Trich.org often.
Feel free to follow my hair pulling struggles on twitter – http://twitter.com/trichotillosis
Hey, thanks for commenting! I have not heard the term trichotillosis before so I am glad you posted it. And thanks for the twitter link! Much love, Christina
Christina,
I am for either Trichotillia or Trichotillosis. These names give a commanding presence to the daily fight of someone who suffers from Trich and their loved ones who must accept their inability to change another human being. “Hair Pulling Disorder” seems to trivialize the courage and tenacity of a “TrichFighter.” Take the mania out but retain the respect of the fight!
Susan
I like “trichotillia.” It rolls off the tongue easier than “trichotillosis.” And I also agree about removing the “mania” part. We don’t need the negative connotation.
I think Trichotillia could work. I don’t like Trichotillosis; sounds too much like an internal disease, too much like trichinosis. I’m not keen on Hair-pulling disorder. We ought to spend a year tossing around these possibilities, so that when we settle on a new term, it’s a keeper.
I totally agree with constant reader about the
trichotillosi sounding to much like trichonosis!
I like the sound of Trichotilla
I like renaming to trichotillia too. The mania part is a bit misleading and scary.
Christina,
I think the “mania” part can be associated with shame as well. I’m all for the Trichotillia.
Susan
PS This is my first blogging experience. Very cool.
I agree I really like Trichotillia.
I already feel crazy enough hiding this secret from other people. Let alone if when I revealed the time I had to make myself sound like a maniac.
I know this is my second comment, but I just wanted to say that I couldnt agree more. I have recently started to “come out” so to speak and have been slowly telling close friends and family,after all these years. I can’t decide which is harder to admit, that I pull out my own hair, or that it is called “trichotillomania”,which sounds just horrible ! almost anything would be better, as long as mania isnt part of it>
I completely agree with changing the name. My son started pulling as a teenager and the name was a scary to him as the disorder. People with trich have enough to think/worry about.
I am so sorry for your son. He is very fortunate to have parental support & help!
I wholeheartedly agree a name change is in order, at least dropping the mania-suffix which has been proposed. I would even consider shortening it further from the suggested trichotillia to tricho-tia which is easy to pronounce and is by the way is how one would pronounce the word trichotillia in Spanish.
Hi, I agree with Susan Smith and think Trichotillia would be a good name. It makes it sound like a true medical condition. I think Hair Pulling Disorder would sound like just a bad habit and would not encourage the understanding of how devastating this can be and how hard it is to control.
I totally agree with everyone! I hate seeing the word in print, hearing it and the “mania” reference is awful…trichotillia sounds like something I can beat! I am new to blogging, first timer, but I for the first time I do not feel alone with my trich.
Mania is the only part of that word that I understand. How about pullorexia or hairaholic or hair-pulling syndrome. It may explain it better, but it feels more like mania to me. Why not call it what it is?
I like trichotillia, pronounced tricho-tia like Debby S said. It’s official enough sounding to demand respect but easier to understand. I don’t like Hair Pulling Disorder because I don’t like to think of it that way. It’s more than just pulling hair to me. And I don’t always want someone to know that when I’m talking about trich that I’m talking about pulling my hair. Also, if there’s a Hair Pulling DISorder that makes it seem like there’s some normal pattern of pulling hair. I don’t know. That just doesn’t make sense to me.
Funding-wise, I think a new name could actually draw more funds because new names make the rounds and people actually hear about the things that are changing and get more interested in them.
I agree with in that if there are extra resources available, they could be used for a name change, but they would be better spent on education, spreading awareness, and research on causes and treatments.
Although if I had to choose a name change, I would go with trichotillia. It’s not pleasant being a “trichotillomaniac,” but it might be easier to think of oneself as a “trichotilliac.” It’s not that important, but it’s something to consider.
Mania sometimes is defined as madness. In my mind, the true ‘madness’ associated with this condition is the lack of awareness in the medical community and hair industry. There are all sorts of connotations associated with the word ‘mania’ that are all open to personal interpretation. However, it is the ones which link it to a medical condition which convey the seriousness and obsessive nature the general population can understand ( for examples see…http://en.wikipedia.org/wiki/-mania). I’d like to see an awareness campaign targeted toward the educatation medical professionals and hairdressers. I really don’t care what you call it..it just needs to become more mainstream otherwise effective treatment will never be developed.
I don’t think there would be much chance of getting a name change just because we want one. The name Trichotillomania is definitely misleading because it implies that what we do is a psychological problem, and I disagree with that.
I call what I do a hairpulling ‘condition’, rather than ‘disorder’. Even the word disorder has negative connotations for me.
I vote for the name of Trichtillia as was suggested,W/O the mania !
I’d go for either trichotillia or “compulsive hair-pulling disorder”. I do think a name change could make it easier to open up and talk about the condition.
I like “hair pulling disorder” too. I find that people who are not familiar with it (like my FAMILY) are hesitant to say ‘Trichotillomania’. It’s intimidating, or something….I don’t know. This way, there is less explaining to do….
Does this make sense?
i like the trichotill without the mania also. when i have told school teachers and personel in the past they look like i told them my son is a murderer or something.the schools are the worse to judge those with this disabilities. thanks..tn.
Finding a new name (like trichotillia) and educating the public and the medical community are not mutually exclusive. We can do both at once without harming our educational mission. Fifty years ago, doctors who hadn’t a clue about how to help a person with trich end that habit shamelessly collected money from me for months on end before I realized how incompetent they were and how unwilling they were to admit they knew nothing about how to help me. It wasn’t until the 1980s that I started to meet therapists who had actually heard of trichotillomania and met the one who told me about that term. Our new name should be easy to pronounce upon sight: tricotia might end up being pronounced triCOTia or tricoasha (as in Nova Scotia). What do others think?
Trichotillia gets my vote. “Disorder” sounds like it is something you can never overcome. But “mania” needs to be taken out immediately. Rock on and thanks for having such a great supporting group!
Can we get the word out to main stream care-givers and hide behind our shame at the same time? We are highly functional, rational people, but the effect is devastating. I suffer a loss of self-esteem, quality of life and who I want to be. The fact that this isn’t physically fatal keeps the attention at bay. The consequence of living with and battling this makes me almost wish it was.
I vote for Trichotillia. I’m tired of associating the Flashdance song with hair pulling (“she’s a maaaaaniac, maaaaaaaniac…”) Let’s make it official.
Personally, I think we should leave it just the way it is. I has a seriousness about it, that shows that it IS for real. Hair Pulling Disorder, just sounds like something we made up when trying to educate somebody to our situation. Trichotilla, just doesn’t seem worth it. I am 63 and have pulled since I was 8 years old. I know when I heard the word, I was so HAPPY for it to have a serious name. Let’s NOT reinvent the wheel.
I hate the name trichotillomania! I was so happy to find out that other people did this only to be too embarrassed about the name to actually tell anyone. Anything with “trich” in it sounds strange. I vote for compulsive hair pulling disorder. The compulsive part lets people know you can’t stop easily and having hair pulling in the name lets people know what it is without having to look it up. This would be extremely helpful to someone who has it but is too afraid to seek answers. They might come across the name randomly and would immediately know they aren’t alone.
Please do away with the name as it currently stands. The name itself is embarrassing. It’s also probably not something a sufferer would find while googling for answers. Something simple, that other people can understand would be helpful. I’d never tell anyone I had a condition with the current name! That would be more embarrassing than admitting I had the condition at all.
Thanks for all you’re doing to inform and help people. I spent many years also, trying to find answers, and nobody had any. Although my teenage years were a complete nightmare, (I thought I was crazy)–I eventually realized that I was a worthwhile person, and have had a great life, over-all, especially with my 3 children.
And by the way, I’ve almost died twice, because of taking the recommended antidepressants. The last time, I passed out, then came to, long enough to tell my husband to call the ambulance. The paramedics could not find my pulse. I was conscious, but in heart failure, due to depleted potassium. Sometimes, the cure is worse than the condition. (Just a word of caution. Medication isn’t for everybody.)
I have never had a problem with the original name. I’ve never found it offensive. The only complication I had was in the beginning, when I first discovered what I had and was learning to pronounce it. Personally, I much prefer “trichotillomania” to the other alternatives. They’re just as much of a mouthful in my opinion.
Trichotillia, trichotillosis, trichotillomania… Why not keep all of these and give individuals the choice? That way everyone can be happy. Regardless of which term is used, there will always be people who are unsatisfied with it.
I agree with keeping the name as is. It is a scary name but we need people to know that we have something out of the ordinary that traps us and hurts us deeply. I hope someday that the medical community will realize how much we suffer. I do believe it has some psychological background, at least for me, as I have recently realized when and how this disorder began with me. I hope someday there is a “cure” but for now we need for the outside world to know what we go through each day.
I agree with Barbara that there is some kind of psychological background. It’s not one specific trauma, but a sensitive child’s way of coping or tuning out. I also believe it could be about oppression and internalizing, with no safe place for expression. It’s kind of a reaction to nature meeting nurture.
Thanks Karen for your response. I think very few people agree that a childhood trauma can be one reason for their trich.
My daughter was diagnosed with Trichotillomania 11 years ago. I didn’t like the mania part either. I agree Trichotilia would be a better name. Some mentioned “hair pulling disorder” I think this throws it out there too directly. At least with Trichotilia you have a chance to explain it without it sounding so drastic or shocking.
trichotillomania is just a word. it has only as much power as we give it.
if the name of our condition is changed to trichotillia will that make us feel better about what we do to ourselves?
if the name of our condition is changed to trichotillosis will that make it easier for us to tell the world about our condition so we can educate them?
if the name of our condition is cnanged to trichotill will that erase the shame and embarassment and isolation and depression and anxiety and other mental health issues associated
with trichotillomania?
if we change the name to “hair pulling disorder” will that reverse the physical problems that some of us have endured due to years of pulling out our hair, like carpal tunnel? or neck problems that result in arm pain and numbness due to hours spent in awkward positions while pulling out our hair?
i joined a support group online about 5 years ago-”trichotillomania-friends@yahoogroups.com”. i have read and wrote and said and heard all the words about trichotillomania over and over for the past 5 years that used to make me sob uncontrollably. now, i cry on the inside only for years lost, quiet tears on the outside of recovery and acceptance.
i don’t care if the name is changed or not. if it is changed, it is changed. really, it is our feelings about our condition that need to change, to work on acceptance and recovery, which was a big step for me, since acceptance of my condition never occured to me until i joined the support group-”trichotillomania-friends”. i didn’t realize i had to work on recovery, my pulling wasn’t going to just go away on its own, like i wished it would until i was 50 years old. it was a struggle to find my way, support groups help.
Awesome to have a blog! The name could be anything but the most important thing is to get awareness and research backed. Lets get to all the elem. schools then move up the ladder to the bigger schools! Thanks for all you do Christina!
That’s a good idea, Marlis. I started pulling I think even before I entered school (I was so young I don’t even remember when I started pulling), but I didn’t find out there was a name for this until my sophomore or junior year of high school, and that was only by stumbling on an article on MSN by chance. If we can spread awareness to students in schools, there could be a lot more hope of getting them help and treatment and there’s a better chance of recovery the earlier it’s treated.
From my experience as a pathologist I can tell you that many disease entities have antiquated names based on old ideas. They do get updated and changed, usually by experts in the field at consensus meetings. I vote for Trichotillia also and the way to do this is through the psychiatric community, particularly those involved with Trich, as they would have to change it/update it in the next version of the DSM, which does not come out yearly. We need to know when the next one will be decided on and get going on this thing……
Dear Jacki, really wonderful to hear you chime in. My love to Leila! Love, C
trichotillomania is a Greek word. I am Greek, but, believe me, it also sounds scary in Greek too!!! If we take the -mania part out, we should do the same for kleptomania, pyromania, etc. Lets all help Christina and TLC educate more professionals and inform the public, so that the word will scare us no more. Knowledge is freedom.
Hey Nikos, great to hear from you! How are things in Greece? Love to the family, Christina
Dear Friends, urgh – to answer each comment would take a LONG time (as I am a hunt and peck typist) but suffice it to say, TLC IS working with the DSM-V committees involved in updating the DSM. I don’t know if we will be successful this time around in changing the name, but we are really giving it our all. If not the next version, then I am sure we will have a new name by version VI.
Love to all, Christina
Re Christina’s last post: I figured that TLC could work with the DSM committee on providing a new name for trich; we are connected with enough professionals that it shouldn’t be that hard. However, as I wrote before, we (the supporters of TLC Inc) should take plenty of time on coming up with our recommendation. I’m still favoring trichotillia. Trichotillosis sounds too much like trichinoisis or tuberculousis!
I have to admit that, though I’ve come to terms with trichotillomania in many ways and can write about it all the time, I HATE saying the word out loud. I talk to my boyfriend and I just won’t say the word. But I don’t think it’s because of the ‘mania’ part – I guess I would have trouble saying it just because of what it means.
~Penny – Trichotillomania Blog
Trichotillia is good. Pretty, even, without the mania!
My 22 year old daughter has had “hair-pulling syndrome” for 10 years affecting mainly her lashes and occasionally eyebrows. I agree with the majority…drop the mania tag. I also don’t like the “disease” or “disorder” moniker. The word “syndrome” has a much less shameful tone.
Christine, thanks for your blog. TLC has been so helpful, too.
Deb: For medical purposes, such as treatment, research and insurance reimbursement, it has to be considered at least a disorder. What is truly shameful is for those afflicted to be told to “JUST STOP” by the uninformed. Acknowledging the condition as a disorder should actually relieve shame, because it is clearly not the afflicted person’s fault that they pull (or pick) and they cannot cure it with willpower alone anymore than a diabetic can control his or her blood sugar without help. (I’ve got a 16 year old daughter who has had it for almost 4 years.)
I completely agree with the name change. My daughter suffers enough with the disorder not to mention having to utter the word Trichotillo”mania”. If I can help get this changed let me know.
I definitly suggest a name change , something not so forboding and sinister sounding
I have consulted with my group on Facebook and we are voting. I will share the results later
The options are:
-Remain the same
-TLC’s Trichotillia
-What it is already being referred to as; Trichotillosis (Condition, instead of Madness)
Hi Jenne,
The DSM-V Committee has already closed the voting process….it does look like Hair Pulling Disorder will be likely result although there is always a chance it will remain as is: Trichotillomania.
Christina has done it again.
I think the name is hard to pronounce for many.
It leaves many feeling “crazy” with the mania
part. This is a great site, even though I am
a therapist and recovered picker mainly.