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BFRB Week: How you can support your family and friends

Thank you in advance for letting me expose some vulnerability with you all… I’ve been reading Brene’ Brown’s “Daring Greatly,” so I figure, why not just lay it all out on the table before I start…

Here I am, trying to stem off a panic attack as I attempt to write the first of a series of blogs to bring awareness during BFRB week, but I realized I am putting too much pressure on myself to do all the things I want to do. Finding the time to write is almost impossible. Over the past few days I’ve been fighting a head cold. I also scheduled too many events over this weekend in an attempt to connect with people again after a long period of isolation. Not to mention, I’m in the midst of mothering an almost-2 year old who basically has the temperament of a wind up toy car. Today she didn’t nap and decided it was hilarious to try and smack both her father and I right before bed time…

Therefore, I’m going to write one blog for BFRB week. It’s not going to be perfect and it may not even touch on everything I wanted to touch on, but I hope it will at least give readers an idea of WHY BFRB awareness week is important, and HOW you can help support people with BFRBs through their struggles.

October 1 through the 7th is BFRB week. BFRB stands for Body-Focused Repetitive Behaviors. These include compulsive hair pulling (trichotillomania), compulsive skin picking, nail biting, lip biting, etc. The TLC Foundation for BFRBs says the following about Trichotillomania:

Hair pulling may occur across a variety of settings and both sedentary and active activities. There are times when pulling occurs in a goal-directed manner and also in an automatic manner in which the individual is less aware. Many individuals report noticeable sensations prior to, during, and after pulling.  A wide range of emotions, spanning from boredom to anxiety, frustration, and depression can affect hair pulling, as can thoughts, beliefs, and values.

Although the severity of hair pulling varies greatly, many people with trichotillomania have noticeable hair loss, which they attempt to camouflage. Thinning or bald spots on the head may be covered with hairstyles, scarves, wigs, or makeup. Those with missing eyelashes, eyebrows, or body hair, may attempt to camouflage with makeup, clothing, or other means of concealing affected areas.

Due to shame and embarrassment, individuals not only attempt to cover up the effects of trichtotillomania, but may avoid activities and social situations which may lead them to feel vulnerable to being “discovered” (such as windy weather, going to the beach, swimming, doctor’s visits, hair salon appointments, childhood sleepovers, readying for bed in a lighted area, and intimacy).

As someone who has battled trichotillomania for the past 27 years, since I was 10 years old, it’s extremely important for me to educate the public and people in my personal life on trichotillomania and other BFRBs. As many as 1 in 25 people are struggling with some type of BFRB. It is very likely you know someone with a BFRB, even if you don't realize it. It is more prevalent than schizophrenia (1 in 100 people), anorexia (1 in 200 women), and autism (1 in 68 children), yet even though almost everyone has heard of those issues, hardly anyone is aware of Trichotillomania and BFRBs. Why is that? BFRBs are shame-based. We do this to ourselves. It’s literally our hands reaching up and behaving a certain way that creates the outcome – bald spots, lack of lashes, bleeding skin, etc. The disorder is extremely visual, and can be noticeable; however, many people mask their hair loss and damaged skin through makeup, wigs, and hats. We don’t want anyone to know… Like so many others, I thought I was crazy and was the only one who did this, until I read a book in college and learned that my issue had a name and millions of others also pulled their hair out.

Growing up I felt socially awkward and isolated, with very few friends. To this day, even as I’ve worked through some issues and found more confidence in myself as a human being outside of my trich, I still find it hard to develop close intimate, trusting friendships. 

It bothers me that as an adult I am still reverting to a coping mechanism that I developed as a child when I had no other outlet for my anxiety and fear. Luckily, there are so many more resources available now for people with trichotillomania and other BFRBs, that adolescents and their parents are much more equipped to begin the recovery process sooner rather than later.

It’s important for me to help the loved ones of people with BFRBs to understand what their friends and family members are going through and how they can support them. I asked individuals in some Facebook support groups for their thoughts:

If you could have the chance to tell your loved ones, family, friends, spouses/partners, parents/siblings, teachers, doctors, therapists ONE thing that they could do to help you through your recovery process, or ONE thing you wish they would know about the reality of what it's like to live with Trich or BFRBs what would it be? 

  • One thing I wish my family did was not get angry when I've had an episode, they don't get that just because I don't talk about it or there's not always patches that it's not something I can just switch off
  • I like when people give me things to do to occupy my hands. Like, "let's take a walk!" Would be so much more helpful "just stop!" A lot of people act like it's just so simple to stop.
  • Oh, and it doesn't hurt. A lot of people seem confused that it feels good
  • To stop telling me it will get better. It won't. I can't stop. I'll have this until the day I die.
  • Don't talk about it... the less I think about it, the less I pull. Even if someone compliments me on how much hair is coming back, it brings it to mind and makes me want to pull again... maybe if I grow all the hair back I'll stop getting urges and it won't trigger me, but until then...
  • If I could "just stop" I already would have. And that it’s ok to love myself whether I am pulling or not. This acceptance doesn't mean that I don't want to stop but rather I can accept myself and my worth regardless of how many eyebrows and eyelashes I have.
  • Don't joke about it, it's not funny to me, it's something I genuinely can't help doing.
  • It's an addiction and not a choice
  • Don't talk to me about my hair, even if it looks good
  • Don't be mad or upset if I don't have as much hair as I did the day before; it's not an easy thing to control once you've started pulling.
  • Don't mention my eyebrows, or lack there of. Just don't even talk about it.
  • I would want them to know it isn't controllable, it is very complex so drug therapy or talk therapy alone won’t fix it, and I was extremely ashamed of it.
  • Now I am not ashamed of it. It is a part of me just like my weird pinky fingers, my blue eyes, and my long pointer toes, my tummy fat. Sure I want to change it, but I wont let a part of me shame myself for being me.
  • I want them to know it is a disorder, not a habit, not something that is easily controlled. I want them to know that making you feel shame, or embarrassed only makes it worse, and prolongs the relapses. Don't bring it up. Accept me for who I am.
  • The "just leave your hair alone" type comments. Don't you think I would, if I could?! It just increases guilt, shame, anxiety, etc. Like nagging a smoker; it doesn't work!
  • I think I would want people to be curious about my world but in a genuinely curious way and not from a shaming point of view. Be compassionate with myself and others who may be dealing with something even if they don't quite get it. I would also like people to know it is possible to accept life with trich and feel love for oneself. We don't have to shame ourselves.
  • That it's not as easy as "just stopping." Obviously I wouldn't do it, if it were that simple.
  • Don't shame the family trichster by saying things like "she is so beautiful, if only she would stop pulling her hair/eyebrows/lashes."

I appreciated everyone who shared their thoughts. Here are a few more ideas on how YOU can support someone you know with Trich and BFRBs:

  1. Listen: It’s so important for people with BFRBs to know they have support and that they are loved unconditionally. The best way to do that is to listen to their personal story when they are ready to tell it.
  2. Ask: “How can I help you?” You then put it on your family member or friend to figure out what they need from their support people. It may be as simple as listen (see above) or more specific like, “if you see my hand going to my head, gently touch me without saying anything.” This empowers the person with the BFRB and also allows you to be helpful.
  3. Avoid clichés and empty platitudes: It’s so easy to say “can’t you just stop,” or “at least you don’t have (fill in the blank with another disorder),” or “everything happens for a reason.” These do not help the person struggling feel better about their personal situation, and only may cause them to shut down more and communicate less, in turn increasing any isolation and shame they might already be feeling.
  4. Be sensitive: Don’t post memes or make comments about girls who over-pluck their eyebrows, shave their heads, or have scabs; Don’t say “it makes me want to pull my hair out;” and don’t give hair more weight than it should have. Hair is a part of people’s identity but doesn’t have to be the only thing that defines someone’s identity
  5. Be Tactful: If you don’t know if someone has trichotillomania or skin picking disorder, take them to the side and ask them in private, or even better, email them so they have time to process before responding. I don’t think it’s necessarily wrong to ask, but do so with the intention of caring for the person and wanting to support them, not judge or gawk at them, or immediately try to provide “solutions” to their “problem."
  6. Don't focus on the Behavior: BFRBs are just part of someone's identity. Focusing on that single behavior can increase shame. Remembering and acknowledging all the other positive things about your friend or family member is very important. People need to know they are valued and important outside of their struggles.
  7. Educate yourself/Become an Advocate: Learn as much as you can about BFRBs and educate people. This is especially important in schools, since many people develop BFRBs in adolescence. Education is the most effective way to prevent bullying. If children know that they are not alone and there are other kids with the same struggles, they will be more open about their own struggles and compassionate towards other kids, thus creating an atmosphere of love and support instead of judgment and bullying. 

If you or someone you know and love is struggling with a body-focused repetitive behavior such as trichotillomania, check out the TLC foundation for Body-Focused Repetitive Behaviors (www.bfrb.org) for more information, including events, support groups, lists of clinicians trained in treating BFRBs, books and other resources.

If you are reading this and have never told anyone you have compulsive hair pulling or skin picking, please feel free to connect with me directly. I would love to talk to you! Always remember you are #NotAlone. #BFRBWeek.

*All photos/graphics related to #BFRBweek belong to TLC Foundation for BFRBs.