RensKnight [2022-06-20 05:59:43 +0000 UTC]

On Body-Focused Repetitive Behaviors: A Confession,Trigger Warning: I don't use these much but in this case I will, because there can be actual, legitimate triggers for many people who experience body-focused repetitive behaviors (BFRBs) such as hair pulling or skin picking. If you are having trouble with your symptoms right now, or you know you are susceptible to an episode if the subject is discussed, please use caution. I will endeavor to avoid overuse of details not needed to get the point across but I can't make any promises. Finally, as always when I talk about medicine, I am NOT a medical professional. Do NOT take anything I say as treatment advice or scientific gospel. You should consult a qualified physician and/or therapist to come up with the right course of treatment for you.You would really think that in 2022, when it seems like just about every condition or disorder is getting public airtime and there is a huge push for acceptance, that I wouldn't have waited so many years to post this. I started this account in late 2015, and since then I've made a lot of great friends: @EsmeAmeliaSolo, @Masterof4Elements, @RainingStarWars, @idrilhadhafang, just to name a few. (If you're not mentioned please know it's just because it's late at night and I'm writing fast. You're still a treasured friend! )Being open about anxiety and depression (which I am blessed to say are now very well treated) on DA hasn't been hard at all. They're something that has been openly talked about since the late 90s when TV drug ads became legal in America. Though I have a lot of beef with the way the pharmaceuticals market sometimes, I can give them at least some credit for kicking off open discussion and beginnings of destigmatization for mood disorders.Body-focused repetitive behaviors (BFRBs) as they are currently known...that, however, is a whole other ball of wax, and to say I've experienced huge amounts of fear, pain, and shame because of it is a freaking understatement.Basically, BFRBs are repetitive behaviors like hair-pulling and skin-picking that are difficult to control and cause distress and damage to the sufferer. Older names you may have heard are trichotillomania (for hair-pulling) and dermatillomania (for skin-picking). And for something that must be common enough that we have sayings like something making you want to "pull your hair out," or even seeing it happen for laughs in a cartoon, there is one hell of a lot of stigma for the actual disorder, and the people who have it.(TBH I think phasing out those old names is a good step. The "-mania" ending brings a lot of associations that are both very negative and seem to be inaccurate from a more scientific perspective.)Now...another thing that's an understatement is that I do not see eye-to-eye with Amy Schumer in just about anything. That said, there are two areas where I do agree. One is her advocacy for increased mental health funding. The other is the fact that she very recently went public with the fact that she suffers from hair-pulling disorder. That takes a lot of courage. And that's one of the reasons why I finally felt like it was time for me to "go public," at least as far as my online life is concerned.It has been a long, long, long struggle for me.It first started for me at 12 years old, which also happened to be about the same age when anxiety and depression first really kicked in. Whether that's directly linked or not--whether the chicken or the egg came first--that's something I still haven't figured out. There's a lot I have yet to figure out, and I've been dealing with this godawful thing for over a quarter century.In the already harsh environment for middle schoolers in the 1990s--and yes, every stereotype you've seen from that time period is true if not worse--it turned life into an absolute living hell at school. The ridicule was bloody relentless. And not only that, but many teachers seemed to openly condone it and believe it was deserved. And as if THAT weren't screwed up enough, the school principal had the freaking NERVE to call my mom to school, corner her in his office, and accuse her of child abuse to cause the hair pulling.When I force myself to be completely objective, I can understand where, in the literal ignorance and also the victim-blaming mentality of the 1990s, someone might jump to the assumption that a damaging behavior like a BFRB could be the result of some sort of trauma or abuse.But in my case, and the case of many who suffer from BFRBs, that wasn't it at all. And I have never, ever seen my mother so absolutely destroyed and betrayed as I saw her when she came out from that meeting. The sight still haunts me to this day.So too does the awful fallout of my parents' attempts to try to control the problem at home. Again, I want to reiterate they were not abusive parents. That was not the intent behind forcing me to wear an awful, ratty hairnet/scarf type thing at home, doing daily "hair checks" to hunt for signs of damage, or checking the floor of places I'd been either behind my back or when they thought I was asleep. Still, the break in trust between me and them...especially between me and my mom...only made things much worse.Why did they do these things? They were under the assumption--again one I can force myself to understand objectively--that BFRB behaviors are a "bad habit" comparable to nail-biting. (And yes, I do bite my nails very much in the "normal" way, like a huge percentage of the population does. That little habit is a battle I have chosen not to fight since in my case it does no harm and I have also never once had the misfortune of experiencing a broken nail. )Unfortunately, BFRBs are not mere bad habits. It's so hard to explain why an episode happens. In general, most people who suffer from BFRBs are rational, reasonably intelligent people. We comprehend that damage is done, we know that's not a good thing, we are not doing it for attention or any other reason stereotypically associated with (and also not necessarily accurately) other types of self-injurious behaviors. Believe me, we HATE attention and when you figure in the trauma that attention often brings, I hope that drives the point home. Like I said, it's taken me a long damn time to get the nerve to write this thing.I have struggled for a long, long time trying to understand why this has happened to me, and to others who have BFRBs. I don't mean that in a "poor pity me" way...though yes, I wish I'd been approached with a lot more sympathy and understanding instead of bullying, blaming, and anger when I was younger. I mean that in a very literal sense. I am a person with a LOT of curiosity and a need to understand what is going on with me and my environment. I HATE having something that can be so disruptive on a bad day, that I cannot get my damn mind around and cannot always reliably stop.I've considered a lot of possible connections--some of which, it turns out, actual qualified neurologists, psychiatrists, and geneticists have considered too. Connections/hypotheses I've contemplated include:ADHD (which I am officially diagnosed with), which is now understood to sometimes have some sensory issues with itSerotonin-driven mood disorders like anxiety and depression (which again I am diagnosed with)Obsessive-compulsive disorder (OCD) or even tic disorders like Tourette's (which I am not diagnosed with)Autism spectrum disorders (which again I am not diagnosed with, though I have seen some suggestions that similar genes have been implicated in both ADHD and autismAtavistic and in this case overdriven grooming instincts perhaps possessed by earlier furred hominins, similar to those that sometimes lead to overgrooming in other animals like cats, birds, and furred primatesA few hypotheses that I've pretty much discarded based on my personal experience and the fact that I'm not currently seeing them as research targets, but I am still putting them here just in case a scientific breakthrough somehow makes a connection I didn't anticipate:That BFRBs are related in some way, albeit not the same, as other types of more well-known (and also stigmatized) self-harm behaviorsSome form of body dysmorphiaRelations to other genetic disorders that can result in more severely self-injurious behaviors and/or make the call of the void far harder to not act onAs you can see, that's a lot of hypotheses with no definite answer. Especially for something that I've seen estimates of possibly affecting up to 1 in 20 Americans.For me, the lack of an explanation hurts. It offends every part of me. As a society, we've become pretty good about accepting alopecia, an auto-immune related disorder causing hair loss. (Let's please NOT have the Will Smith discussion here. His behavior was inappropriate. Full stop.) Even in the 1990s, that was fairly well known. And of course plenty of people lose their hair when they go through cancer treatment. Had the visible problems I've experienced at various points in my life been down to something like that, for me it would've been a lot easier to accept. Hell, I might have even leapt head-first into styling with wigs, scarves, and goodness only knows what kind of craziness I might have tried when con season rolled around. The thing is, no one is to blame for alopecia. No one is to blame for the effects of chemo and radiation. They are "medical," as society understands it. They just are.But with this...God, it's so hard to shake the idea--one that comes from both inside and literally came from the bullies (both children and adults) and the unintended messages from my parents--that this is my fault. That this is a character weakness. That I am not strong enough, not disciplined enough, or whatever it is.What can be done? Again...it's variable, and frustrating. There is currently no textbook treatment method with the kind of scientific rigor that exists for treatment of mood disorders or PTSD, for example. One of the better routes I'm aware of is to see a therapist experienced in treatment of BFRBs. There have also been some anecdotal reports people who found that, if being treated for anxiety or depression, that their meds for those disorders also helped with BFRB symptoms. Unfortunately I found no effect there. What improvements I have found have come on the therapy front though it is still frustrating and it is still a damn struggle.I've seen some other medical treatments researched as well, but one that I was reading the scientific literature on and rejected out of concern for the side effects...well, another reason I am not naming specific treatments in this article besides the little thing of not being a licensed medical professional is because that one I had been tracking got flagged by the FDA in 2020. It was being used off-label for treatment of BFRB and other psychiatric conditions. But the same drug was being marketed as a "nutritional supplement" (and even my therapist thought that was all it was), and that was halted. The FDA is currently reviewing that decision and has yet to issue final guidance, but the fact that they got concerned with it on top of the concerns that came out of my own literature review made it VERY clear that no drug or supplement should be started without consulting a knowledgeable psychiatrist and pharmacist under any circumstances. You HAVE to work with people who know what they are doing, even if you feel comfortable with reading scientific literature and you think you would make a "go" decision where I wouldn't. Like I said, your safest bet is to start with a therapist who is experienced in treating patients with BFRBs and work with qualified professionals from there.The other thing we can do is education and destigmatization. Those of you who know me know I am very anti-woke. From my own perspective, I don't want pity. I don't want other people feeling like they have to tiptoe around me or give me any special privileges. I don't want to beat other people over the head or make them feel guilty...and yes, I still feel that way even though people have legitimately hurt me in the past.But I do think that knowledge and education are power. Again, not in a way that attacks people, but that makes them aware that body-focused repetitive behavior disorders exist and that those who have them are not weak, defective, or whatever else, and that they should not be made to feel ashamed in cases where people have visible damage. Hairstylists and dermatologists need education too, so they know how to work effectively and in a dignified manner with clients who struggle with BFRBs. And employers too--I am aware of people who feel they can't be accepted in the workplace because of their symptoms and even well-meaning hiring managers might pass over someone if there is visible damage.Again, though, I don't want preferential treatment or pity. As far as I'm concerned, education and just not being a dick to people or excessively nosy if they look different is all I ask. Doing this, at least, can help lessen the cycles of guilt and shame that many people experience, and make it easier for them to seek treatment.How am I doing at the moment? Well, for the sake of other people who suffer BFRBs, I am keeping it intentionally vague, but what I can say is that I do have hair that I can style and that hasn't brought any embarrassing comments or questions at work. It's not the quite style I had at my best period in life, but it is one that works, and that's a very good thing. I'm not counting out getting back to something closer to my favorite style, the one that looks a lot more like my favorite Star Wars character, Kylo Ren. I also bought a scarf of my own for when I'm at home, that is very much NOT the thing that was forced on me when I was little. It's another Darn Good Yarn product--it's handmade, and yes, it's on the pricier end, but it's MINE and it's something I chose for its beauty and that was not forced on me. (These are some examples...gorgeous and sustainable! )In fact, they're so nice that I bought another one for my mom for Mother's Day for any time she might like to accessorize. She doesn't know about what I use mine for...I'm still not where I willingly bring the subject up most of the time with her...BUT still, we've come a long way from our nadir in high school and college, and I loved seeing how happy she was with her present!I'd like to close out with a few resources--I am open to suggestions from others, especially any qualified medical professionals who may be reading. Please note I will not post links to any pages that have images or explicit descriptions BFRB sufferers could find triggering as this is a context where even an anti-woke person like me finds the word legitimate. If I find such images or descriptions, I will unfortunately have to remove the comment even if well-meaning.Overcoming Body-Focused Repetitive Behaviors: A Comprehensive Guide: A book published in 2020 that's pretty well up to date. Please don't use it as a substitute for seeing a qualified professional, but even if techniques it lists don't necessarily help, it will probably make you feel less alone. The TLC Foundation for BFRBs: An organization that educates on BFRBs and supports those who are suffering. (Just a heads up...one of the "popular articles" describes the substance that is currently under FDA review. The article was written in 2017 and does not appear to have been updated to take the new situation into account.)@GuidingLightProject: A moderated group on DA for support for all mental health issues.Please feel free to reach out to me here in a Comment, or in a Note or in Chat! And please feel free to share this with anyone who may find it helpful!! (If you need to discuss or share art with explicit images or descriptions of symptoms/damage/episodes, please keep that to Notes or Chat.) Finally, a stamp feature because...stampies! You know me; I can't resist stamps!! ,

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b-o-r-z-o-i-i [2016-01-29 00:36:29 +0000 UTC]

yo ive had dermotillomania for 3 years, and it mostly manifests on my head (so i end up with spots just from scratching...) so obviously im no expert on trich.. but i have methods that work for both trich and dermo!! ;v;
--wear a hat constantly, even when you're inside. not just a baseball cap, a beanie or even a swim cap that covers your entire head!! something you cant reach into easily!
--if you pull even 1 hair, immediately stand up and go do 10 pushups lol, you'll be exhausted and it trains your brain!!
--wear rubber gloves and/or keep your hair wet all the time
--tell family/friends to watch and stop you if they see you scratch/pull. ALWAYS have people around you! if you pull on leg/arm hair, wear long clothes,, and NEVER keep your legs under a table. your watcher should be able to see all areas you pull!
--there are certain times and places that trigger trich/dermo!!! for example, when i go into the bathroom before a shower or stay up too late on the computer, i cant help it.. but these triggers are different for everyone. change your schedule so you spend LESS time in these situations!!
--pick wrappers/stickers off containers, pet an animal, tear paper into long strips, squeeze a squishy ball, otherwise keep your hands busy
--pound your fist on the table or LIGHTLY scratch your arm if you catch yourself pulling. please do not actually harm yourself!!!!
--sit in front of a big mirror so you can see your entire body. sometimes seeing yourself in the act will make you want to stop

good luck!! i know you can do it, be strong and never give up<3

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NYCKitsune [2016-01-21 21:14:26 +0000 UTC]

Im 17, I suffer from this since I was 14..

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stafford0705 [2015-06-26 05:42:10 +0000 UTC]

I have had this disorder since i was 14. I turned 40 a few days ago. I remember spending hours pulling hairs from my legs...the digging...the blood...the trance-like state. Things have gotten better but i dont think it ever goes away. Tried therapy, all sorts of meds, willpower, 12 step programs, support groups...and i still find myself, most days, with a pair of tweezers in my hand. But, i am finally wearing shorts for the first time in 26 years so there is hope.

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ChristyReserva [2014-10-01 05:37:42 +0000 UTC]

It's less than 30 minutes until the start of BFRB Awareness Week Oct 1st! Get involve right here: www.trich.org/involved/cal-nba…

Spread the word!

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jessethepirateking [2014-07-06 15:56:49 +0000 UTC]

I have trich and to be honest am only just starting to admit to myself that it might be a problem. So glad I found this support group, it's nice to know I'm not isolated and their are other people in my position.

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Sorenial [2013-11-20 00:35:58 +0000 UTC]

All I can say is thank you, thank you so much for this group on dA. I suffer from trich and I am glad to see a support group on dA.

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TripleMoonStudios [2013-10-08 18:45:29 +0000 UTC]

Its nice to find a support group ive had trich since first grade an I'm almost 23 now.
I'm trying new ways everyday to try an stop pulling. An sometimes Im not even aware that I am pulling.
This is a on going battle but its nice to know I am not alone or a freak.

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CupcakeKoopa [2013-02-15 23:37:38 +0000 UTC]

oh gosh, thank you so much for making this group I used to feel so weird about my trich...i felt like the only one, and i felt like a freak....i'm so happy to know that that isn't true

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hugpatrol [2012-10-12 21:09:33 +0000 UTC]

hey sorry for not answering til now but yes i would love to be a Affiliate again soory for waiting so lond

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thepoisonedapple12 [2012-07-04 17:29:19 +0000 UTC]

Sorry to ask but is this something I should see a docter about? I went as a child but no one could tell me what was wrong with me.

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MandyTheWolfbat16 [2012-06-30 03:19:34 +0000 UTC]

I have this disorder too,but I don't pick out my hair,only my eyebrows and eyelashes.And a person at school was picking on me cuz she spread rumors saying that I got my eyebrows "Tattooed" and now my friends think I'm weird.But this group I can relate to.Now I know that there are people out there just like me.

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AsherFries [2012-04-28 20:15:37 +0000 UTC]

YES! Finally A GROUP With My Disorder! (Trichotillomania)

Its Good To Know That Im Not The ONLY One With This Disorder...

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HaloRAWRS [2012-03-24 07:44:36 +0000 UTC]

can someone please help me with this i just learned that i have Trich and im really upset and worried about it

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tallest-amadina [2012-03-20 00:59:27 +0000 UTC]

oh my god, i am so glad a friend showed me this group, i finally have a sanctuary where i won't e judged and teased for having trich, i am litteraly crying tears of joy right now,

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BrItTaNyBlUeBlOoD [2012-01-03 00:34:30 +0000 UTC]

please read and follow me, if you haven't read the Diaries I have up on deviant (Which I, unfortunately admit are a little childish at the beginning). [link]

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6dragon6 [2011-12-16 16:36:31 +0000 UTC]

Hello, are you accepting deviations here?

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LoveisintheMetal [2011-11-18 08:34:39 +0000 UTC]

[link]

please read you guys!

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YetiChan [2011-11-12 16:45:28 +0000 UTC]

having trouble accepting submission of literatuire to your group? it has a withdraw option but thats it

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Kyrbi514 [2011-10-29 15:53:53 +0000 UTC]

Here is a good article about pulling

[link]

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Kyrbi514 [2011-10-29 15:53:20 +0000 UTC]

Just in the last month I've had "episodes" which messed up both eyebrows, then once again the left one, the last night I targeted my lashes. Luckily the good brow is with the bad eye and the 'better' eye is with the bad eyebrow. I found that putting on that L'oreal eyelash serum on my eyebrows speeded up the growing process from 6wks to roughly 4wks. It sucks cause I take a speech class and also work with groups for other classes so I feel like I can't escape being in close proximity with people.

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W-i-s-s-l-e-r [2011-10-01 11:14:31 +0000 UTC]

A few minutes ago I was sitting an reading on the computer for hours. When I realized I was pulling it was already too late... I don't have eyebrows anymore...

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Rambler4ya [2011-08-15 05:36:33 +0000 UTC]

I can't believe there's a group like this! I have had trichotillomania for about 7 or 8 years now and its been pretty hard to deal with especially since I never had a name for it until about a year ago.

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