Not Alone- Day 7 of 7 Day Trichster

Mental illness of any kind affects more than the individual who’s mind it inhabits. It affects families, it affects friends, it affects romantic relationships, and it affects daily life.

This is the reality. 

Long and lustrous hair is the desired, perfectly shaped nails are the expected, and clear dewy skin is the ideal. It’s understandable that those with BFRBs feel shame and lack confidence when not fitting the mould. Compliments on my hair appease more to my ability to hide, and less on my confidence. A lack of confidence that has changed my perception of self, but also affected those around me. Shame- transferred to those relating to BFRB sufferers; family, friends and partners. 

There’s much fear in telling a partner, and any friend you have a mental illness, regardless of what it is. There’s fear of rejection, fear in a lack of understanding, in a lack of support. I’ve told partners and friend my story in the past, but never to it’s true reality. Trichotillomania is hard to describe, but also hard to understand. Often times it’s been easier to let leave the details aside, and say “I pull at my hair sometimes.” I’ve never divulged that I suffer from other BFRBs. Partners of the past have been ashamed, angered at my lack of wanting to speak up, and been frustrated “Oh just stop it already!”. I’ve tried, believe me.

Growing up BFRBs also affected my relationship with my parents. No one wants to see their child suffer, struggle and their confidence crash. It couldn’t have been easy to see your child in such stress and feeling helpless, especially as parents. Parents are supposed to be able to fix the problems of their kids, but what happens when there is no bandaid? My parents, particularly my mom had to deal with this. Begging me to stop, to find another habit, struggling to understand. I was hurting, but so were they. As I look back it was a lack of understanding on my part, on their part, and as a family a lack of discussion. We’ve talked about it now, and in the future I’ve no doubt the conversation will continue and bring us closer. 

Body-Focused Repetitive Behaviours have tested and continue to test my relationship with me, with my confidence. There’s something about hating what you do, seeing it affect your appearance, unable to stop that kicks you down time and time again. Living with BFRBs cause questions in every part of life, and primarily makes you question your abilities.

“How can you, with bald spots in your head, wearing fake eyelashes, and yearning to pull, persevere?”

“How can you succeed when somedays they feel so un-confident it’s a struggle to leave the house?”

“How can you focus when you wonder if the person next to you in class is noticing your fake eyelashes, if the person to your left can see your tufts of hair and bald spot?” 

“How can you be confident, and stand in front of audiences, cameras and peers when all you want to do is hide?”

“How can you present when your cheeks hurt so bad talking seems impossible?”

“How can you grow feeling that those you love think what you do is shameful?”

“How can you attend an event or go to a party when you feel so unconfident you’d rather not move from the comfort and safe-haven of your room?”

“How do you stand explaining a short tuft to a hairdresser for the fifth time before finally just saying it was a hair straightener accident?”

Somehow you do, you have to. You take a deep breathe, find the courage and move forward.

I have Trichotillomania, I have Dermatillomania, and  I have other BFRBs.

I am a Trichster, but I am human too, and I will succeed. I will persevere, despite this illness I live with.

For all the others out there: you are not alone, you will succeed, you will persevere, you are loved.

 

 

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Sometimes It’s Not Just Trich- Day 4 of 7 Day Trichster

I wouldn’t be sharing the full story if I didn’t focus at least one day with my own struggle with other Body-Focused Repetitive-Behaviours (BFRBs). As some Trichsters do, I’ve developed other types of BFRBs over the years. I believe my journey with BFRBs began as a young child as a very bad nail bitter, or in BFRB terms Onychophagia.

Since I began pulling my biggest focus has been hiding it. Thats not easy to do. I rarely pull in the presence of others, if I do I aim to be discrete. So as a coping mechanism, and because BFRBs of all kinds can go in hand-in-hand, I also live with dermatillomania, and cheek keratosis. Big words for other parts of my daily reality. 

It’s not uncommon to see me picking a scab on my head, I put it there. Sure it may have started as a dry spot , but it certainly won’t stay that way. Picking a scab until it bleeds, starting a wound where the wasn’t previously one, the annoyance with any imperfection. The repetition of these types of behaviours are common place in my life. Gross perhaps, but thats not the way I and millions of other Canadians see it, we can’t help it. It hurts sometimes, unlike my hair pulling. Some BFRB sufferers pick their legs and arms, the skin from around their fingers or their faces. I also pick the skin around my cuticles or my face- That is dermatillomania.

I started biting my cheeks (cheek keratosis) as a way to fight the urge to pull, on live television broadcast throughout Prince Edward Island. Sitting on stage at the UPEI Convocation Ceremony, having just botched a speech in front of thousands, I was stressed, but watched. Texts from those watching started to explode my phone:

“Why are you making that funny face?”

“Stop being odd.”

“You look funny.”

“You look weird stop making faces.”

Welcome the funny face into my world. I’m often seen with a funny face, lop-sided smile; I’m chewing the inside of my cheek. Of all the BFRBs I live with cheek keratosis is one that is most prominent as of late. I chew the inside of my cheeks, creating wounds, and sometimes it hurts , but mostly my jaw just reaches fatigue due to the weird movement.  Although I still dislike cheek biting, I feel it’s more socially acceptable, and so its become my go-to. Still painful, still frustrating, but still part of me. 

This is not a complete list of BFRBs, or the fullest of their reality. Visit The TLC Foundation for BFRBs to learn more, or check back later today for my compiled synopsis.

As always feel free to join the conversation, ask questions, like & share.

Why Now? Day 1 of 7 Day Trichster

“It’s been eleven years, why now?”

“Why not in a years time?”

“Why not never?”

These are questions I’ve wrestled with over the past few months. I still wonder if now, rather than other is a good time to speak out. I liken it to a kettle on a stove. What starts with a slow boil as temperature rises, until the temperature is too much and water breaks surface bubbling with anger splattering every which way.

I’ve become that kettle of water. Bubbling along happy to help those with mental illness, promoting we all have mental health. Yet underneath the temperature has been growing. That temperature of feeling- of feeling un-represented, feeling alone in my struggles, and  feeling shame.

My kettle boiled-over a few weeks back at TEDxDalhousieU. TEDx Speaker, and Mental Health Advocate Lee Thomas, mentioned Trichotillomania (Trich) and I nearly fell off my chair. It was a quick mention, just a word, as they explained their struggles to the audience. Things changed after that, for it was the final spike to make me feel a need for change. I’ve heard mental health talks, read articles, and videos over the past few years- not once have I heard the mention of Trichotillomania, or any Body-Focused Repetitive Behaviour (BFRBs). I left the theatre not with a sense of hope as I usually do, but one of slight anger and overwhelming determination act…

My brain has been racing of ways to react ever since. Finally I feel the need to put my own shame about my illness aside. It’s scary, but for the first time it feels necessary. I’m tired of being unrepresented, but mostly I’m tired of allowing myself to feel that way.

A film called “Trichster“, a documentary on Trichotillomania, and the first of it’s kind is launching April 18th on iTunes. It is my plan to blog daily until it’s release. If anything it will have been an experiment in my own resolve to share my story. Yet my hope is that some may listen and learn. Sharing one’s illness is not easy and thats okay. May those who are affected by BFRBs feel the need to speak out when they feel ready- as I do.

7 days, 168 hours, and an aim to tackle shame- just me and my computer.

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