Common, but Unknown- Day 6 of 7 Day Trichster

I’m amazed at the amount of outreach, of sharing, and the courage of those who have come out of hiding since I began this journey six days ago. Those who’ve reach out, those who I was unaware suffered as I do. I’m not alone, as others aren’t either, we’re just…

HIDING.

I question why?

There’s support for the mental health movement, as a society we are moving towards being more open. It’s not perfect, we have a long way to go. Yet awareness for most afflictions is growing, and daily I see posts on my Facebook about self-care, and even many speaking out about their own mental health struggles. It makes my heart happy, but it also makes my belly burn with fire. So many live with Body-Focused Repetitive Behaviours, “2-5% of the Canadian population, or approximately 2 million adults and children” according to the CBSN. That is not a small number. Yet still most Canadians, mental health advocates, and even physicians have no clue what BFRBs are.

I’ve seen three psychologists since being diagnosed with Trichotillomania. Two of them have called what I have “a habit”, suggesting I simply “stop it” and fiddle with my hands instead.  One recognized my struggle, researched the disorder, and openly admitted she had no idea how to help. This. Is. Not. Okay.

One factor is awareness. The second is the way BFRBs are portrayed in media and popular culture.

Trichotillomania has been featured on ABCs 20/20 My Strange Affliction more than once. Featured along with those who love carpets, and a life-time witch who is afraid of water. Also seen on TLC’s My Strange Addiction Trichophagia, Dermatillomania and Trichotillomania have been featured as recent as last year. A show famous for displaying the oddities and lifestyles of those who suffer from addictions of all kinds, yet BFRBs are not an addiction? BFRBs are a mental illness. Finally, it seems BFRBs have been featured by Ripley’s Believe It Or Not.

Its no wonder those with BFRBs feel the need to hide!?

The culture that surrounds us is labelling us as odd, weird and unbelievable. If someone with another more well-known mental illness were to featured in such a way I find it hard to believe there wouldn’t be some sort of uproar.

BFRBs affect a significant proportion of Canadians from youth to adults. BFRBs hurt families, inhibit the ability of some to succeed, but mostly damage confidence and self-worth of all affected. It’s time those who are affected start to feel represented. The only way to do this is through speaking up, and sharing information about BFRBs.

Let’s Connect! My goal in this blog is to create a community, help others and in turn grow myself. This is not just about sharing my story, but those of others- Want to collaborate? Suggest a post? Ask a question? Meet to chat? I’m all ears! Send me an email, instagram or via @AnaSmallwood

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So it’s like self-harm right? Wrong- Day 5 of 7 Day Trichster

No it’s not self-harm. It’s harmful to self, but harm is not the goal.

A question I’ve often had to answer in the past is “How BFRBs and Trichotillomania are different, or if they are, from self-harm”. Self-harm as described by The Canadian Mental Health Association  “refers to deliberate acts that cause harm to one’s body, mind and spirit.” I too used to ask myself if what I do is self-harm. Yet over the past few weeks I’ve learned this is far from the case. The Canadian Body-Focused Repetitive Behaviour Support Network (CBSN) confirms that BFRBs are a not self-harm defining the key difference being those who live with BFRBs don’t aim to harm, but rather to fix, correct or improve some aspect of self. Pulling, picking, biting are not seen as harmful, but relieving, helpful, and aiming towards a goal. The resulting harm is not desired.

When I pull hairs, I pull “weird ones” the thick, the curly, the darker, and the oddly textured. When I pick I pick at uneven skin, and imperfections be they hang-nails, dry spots or pimple scabs. Trichsters often look for hairs of specific quality, or in a specific location. There is no release by pulling, no sense of gratification. If anything the act of pulling creates more pain afterwards than during. Those who self-harm find release in their actions, Trichsters find release in giving into the urge, the harm to self is a by-product.

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This week hasn’t been easy- there’s been highs, and there’s been extreme lows. The stories I’ve been told, the thanks I’ve received, and the awareness of self I’ve gained has been overwhelming to say the least. Hard, BUT it’s far from over. Three more days and a lot more to talk about.

Stay tuned and THANK YOU everyone of you who has supported, shared, liked, retweeted, followed, commented and been here ❤

-A

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.

Braids, Buns and Hats- The Art of Hiding- Day 3 of 7 Day Trichster

Over the past two days I’ve been struck by one thing in particular- an ability to hide. It seems that as I share my story, others so too feel empowered which I love so much. Yet it makes me sad in our ability to live so close, to know each other so well, and still hide such major parts of our lives.

Here’s how I hide. 

I’m a bit of an artist when it comes to hiding my Trichotillomania, I’ve had to be. Media portrays beautiful women with long flowing, full heads of hair. Beautiful is hardly patchy hair, short in spots and dry in others. I’ve had to hide that, or at least thats the way I’ve felt over the past eleven years.

I’ve developed mechanisms of hiding my reality, of hiding my Trich. However, these masks of the reality also act as coping mechanisms to keep pulling at bay.

Braids- They take effort, and time to put in making taking them out or ruining them by pulling far less appealing. Braids provide a pulling sensation when done tight enough that I find relieving, but is also not damaging. Braids can go all the way around my head, or only hold a certain part in place; they are versatile. When I wear a braid I worry less that a tuft of hair will escape, hence why they’re my favourite for events and long days.

Buns- Once a ballerina, always a ballerina. I grew up with my hair in a tightly made bun,  it’s hard to pull from the crown of your head when there’s a bun there. Buns also take work, and when you’re dancing there’s little time to un-do and re-do one between rehearsals. Although buns do have their downfall in that they perfectly expose one of my most prominent pulling places; behind my ear.

Hats- Ah hats, one of my favourites. Chances are if I’m studying, or watching a movie at home I’ve got a hat or headband on. They serve as physical reminders not to pull. When I reach to pull a hair, fabric hits my fingers first and reminds me not to. Recently at the Jack.org Summit at MSVU I received a snap back from Hats On For Awareness, which has been an absolute hair-saver (see what I did there?). Not only is it great for reminding me not to pull physically, but emotionally as well.  It’s meaning with regards to mental illness and awareness has helped me to focus on not pulling more than any regular old beanie. Check out Hats On For Awareness to learn more about this great organization.

Photo credits to: Haley Myatt, Beth Hoffe & UPEI Photography

But Doesn’t It Hurt?- Day 2 of 7 Day Trichster

The short? No.

I don’t ever remember my hair pulling as being painful. Sure there is the odd moment you pull a hair and a twinge of pain lasting a second appears, but with it comes a feeling of relief.

When I pull I look for certain kinds of hairs, as many trichsters do. Seeking a certain texture, thickness or length. I pull from specific areas, carefully chosen areas. I haven’t always done this, but over the years I needed to hide bald spots, so I pull in targeted places.

I pull from behind my left ear, the crown of my head and when life is too crazy, or a day is really bad, my eyebrows or eyelashes. For me it’s become about being discrete. Even though I don’t want to hide what I do, and hate the way pulling makes me feel; I still pull as I am a trichster. 

Some trichsters pull knowingly using of tools like tweezers and actively decide to do so.  Others, like me, pull unknowingly in moments of extreme focus such as studying, or in the idleness of watching a movie. My hand travels behind my ear in class, on the bus, but most frequently on my couch watching Netflix or at my desk doing schoolwork. For me, keeping busy is key. I pull when I feel a loss of control such as the end of an event, or completion of a campaign. Times are bad when a constant ceases to exist any longer.

Not physical pain, but emotional. 

The urge to pull cannot be stopped, and in that lies the damage of the illness. It’s not a habit. A trichster cannot “just stop it”. The desire to stop and the inability to do so is what causes emotional pain. The moment of realization that you’ve created a new bald spot, that you’ve been pulling for a hour and notice the pile of hair beside you. Moments of shame at what you’ve just done, of doing something you so much desire to stop, but can’t.

Trichotillomania is with me in everyday. It’s there as I decide how much I hate my hair every morning getting ready, it’s in the insecurity about my hair I feel everyday, but particularly on a windy one. Insecurity lies in my fear of wearing my hair in a high pony-tail exposing a bald spot. Insecurities also lie in my fear a tuft of short hair will decide to peak out at any moment. These insecurities, often lead to fits of anxiousness without a reason, reasons I don’t leave the house some days.

Trichotillomania is a part of me, it hurts my confidence, it controls me, only when I can’t control it. 

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Winter 2013, arriving at a friends apartment hair up in a pony-tail. A bald spot growing out on the top of my head.

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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