When things are good.

Sometimes it’s hard to write when you’re feeling good. Sometimes it’ scary.

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I’ve been struggling to write lately.

Struggling to find a topic, struggling to sit still and write, struggling to find the motivation. Partly I think it’s because I’m not struggling right now, things are good.

When I started blogging there was no goal. There was just a need to talk, to write and to reach-out. When I started blogging pulling was fine. It was there, but it was alright.

As the blogging progressed passed the first #7DayTrichster series it was alright, but things were also not fantastic. Stress, an odd time emotionally and other life events got in the way. Pulling was bad.

Listening to the stories of others is hard emotionally, rewarding yes, but hard on the brain. I found myself frustrated by the lack of awareness, of endlessly hearing of the lack of support. Of hearing others struggle I became exhausted.

Writing more meant dealing with more.

Every blog, every share made me want to pull more. Made me more frustrated, more sad.

Things have turned around now, things are looking up. Things are good. 

So now I sit here re-evaluating. Not only for myself but for all those with Body-Focused Repetitive Behaviours. Do I keep writing, despite not feeling it? Or do I focus on something else? Do I continue to share via this blog when the feeling strikes?

I don’t know.

I’m in a good place, but an odd one. Bare with me folks. I’ll be back.

In the meantime I’d love some inspiration- send me some ideas? 

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Let’s Connect! Want to collaborate? Suggest a post? Ask a question? Meet to chat? I’m all ears! Send me an email or connect via @AnaSmallwood on twitter or  @timetotalktrich instagram. 

 

 

The Cycle.

Those who don’t have Trichotillomania must wonder what it’s like. Do I constantly pull? Is there always an urge? What starts it? There must be a lot of questions.

Maybe here’s some answers.

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It generally starts with some boredom. A day in the car, a long movie, an evening by myself. Activities I generally enjoy, cherish even- but ultimately my Trich loves to take advantage of. It begins with a tickle, a slight urge, one pull. 

Other times it’s an effect of another symptom. A dry scalp begins a path of destruction. Picking a scab, starting another, one where once there was none before- skin picking. Repeatedly picking, healing, picking, healing- rarely healthy. 

On the daily I pull a few hairs here or there. Odd lengths, weird textures, nothing substantial. Sometimes however it gets a lot worse. Days when the world just doesn’t seem right, when I’m “not okay” for an undefined reason-lost in thought. Then is when I pull until it hurts my head, and my fingers ache. When I shake in realization of what I’ve done. When I feel so much hate towards myself, my own actions.

Most days things are good, I rarely pull, and picking isn’t a thing. 

Other times I stare in amazement at the bald spots I’ve been able to create. Baffled at how I’m going to hide another patch of short hair. Wondering if anyone will see the blood from the scab I just picked through my blonde hair. Vowing for the millionth time I will stop this time. 

Feeling once again- unattractive, unworthy, annoyed at myself.

There’s days I wish I could  just get rid of the itch, the urge, to pull. To take it from my brain and throw it to the floor instead of the hair that currently lives there.

Other days I welcome it as a distraction. For it provides control, it’s part of who I am.

I haven’t been in a welcoming mood as of late, and I’m okay with that.

I wonder what’d it’d be like to be pull free. To really feel like me, and not me + this friend I call a BFRB.

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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 or connect via @AnaSmallwood on twitter or instagram. 

Dear Me.

Dear Little Me,

You with the long flowing golden locks. Without a care in the world but only to get to the beach as quickly as possible, and what the next book you read will be.

Now, but days later you’re afraid, you sit with a pile of hair in your hands. You’re questioning “What kind of monster rips out their own hair?” scared at first, then filled with hate.

Thoughts that fill your every fibrous being. Thoughts of hatred, thoughts of dismay, confidence basically none existence, thoughts of guilt, of shame.

Everyday you’ll wake and automatically reach for the tiny tuffs of hair a-top your head, instantly saddened, angered at what YOU, you’re own being has done. Feeling spikey short hair, feeling baldness, feeling everything but relief, until “pluck”.

With that rush of emotions, an ease, a release- the minute a hair, or several leave your scalp.

A release from the turmoil inside.

Turmoil that you’ve created.

Hating yourself, ashamed to even share with your  family what you can do, what you must do.

Little me, it does get better. There will be days when you’re mind races so fast, when your life seems so out of control that you simply can’t leave your room. There will be those days when pulling is all you can do to help. Yet there will also be days, weeks even when you don’t pull at all.

You’ll learn to craft eye-brows, apply fake eyelashes and you’ll rock awesome braids in your hair- gaining compliments along the way. Life will be different little me, but it is your life.

Draw strength from your perseverance, from your ability to cope and to continue despite what you hide. Focus on the good, not on the bad- you are not a monster.

One day you’ll reach out and share your story, people who thank you will make it all worth while. The relationships formed, and the stories shared will keep you going, even on the toughest of days.

Hang in there little me,

-Me.

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.

 

 

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

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.

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.