Christina's Blog

Good morning, world!

We do have it. Believe it or not, there IS effective treatment. Or, let me rephrase it more correctly – We now have treatment that is pretty darned effective. Problem is, it is hard work for the sufferer, and often uncomfortable. But – it does work. The other problem is few doctors know how to offer this treatment. But this is slowly beginning to change.

I’m in New York City at the moment, for several reasons. To attend the Association of Behavioral and Cognitive Therapy’s annual conference, to give a one-day workshop, and to meet with various TLC members.

Yesterday, at the ABCT conference, I had the opportunity to attend the 5-hour institute on CBT for Trichotillomania and BFRBs presented by Martin Franklin, Ph.D. and Douglas Woods, Ph.D.. They are both true experts in the field, and esteemed members of TLC’s Scientific Advisory Board.

What was wonderful was to see the 40 or so doctors who had come early to sign up for this institute, paying an extra fee on top of an already expensive conference. To watch as they paid close attention to Doug and Marty, asking relevant questions, and having an obvious desire to offer better treatment to their clients.

What was also great was to watch how these two professionals presented models for treating both children and adults, with a lot of overlap, but also some real differences in approach, mostly due to developmental processes as the age groups have such different needs.

Both of them have written books , that are available on www.trich.org and I highly recommend them.

TLC trains professionals, with our Annual Professional Training Institute (PTI). The great news is we are in the process of developing a multimedia “Virtual PTI” that should be ready for distribution in the Spring of 2010.

What was interesting for me, was how my own view of the recovery process is somewhat different, simply because I have experienced it from the inside out. There were times in yesterday’s session where I could have clarified things, but didn’t want to butt in to the doctor’s process. Like how the urge changes internally over time. How it really does diminish, when one no longer “feeds” it with reinforcement or emotional power.

Which made me want to get home and work on my own book!  Which I believe will help our community, and also help those that want to help us, by clarifying some of the things that you just cannot know unless you have experienced them.

Gotta get ready for the day!

Much love, Christina

Good morning World!

Got lots to do today, but am working to remind myself to post more often on my blog. It’s a lot of fun to have a blog I am finding!

Okay, here’s today’s news that is going to go out by Elert, but I wanted to mention it also – because here I can actually comment on it.

Finally, at long last, trichotillomania is “a disorder of interest” and is moving higher on the radar at NIH’s National Institute of Mental Health.

The link with a bit more information is at the bottom of this post.

 Now here’s what I want to comment on!

What an upstream swim this has been! When I started TLC almost 20 years ago, I actually thought we would be where we are today after about 3-4 years of existence. 

I knew the sufferers were out there, I knew it was a complex disorder, that if better understood, would shed light on other problems, and I knew I had the fortitude to get things going.

But Good God, it has taken a lot longer than I assumed. Why? I think there are manyreasons, but I used to feel that I just wasn’t doing a good enough job. Talk about a dose of grandiosity… but I do tend to be egocentric, especially in taking on perceived burdens and then flagellating myself when things don’t move fast enough.

It is only when I step outside my own “stuff” that the bigger picture emerges with some clarity. The archetypal species-wide assumption of shame and sorrow that is attached to hair pulling and skin picking…   kind of like the big elephant in the social livingroom kind of stuff that no-one really wants to deal with.

 There’s a subconscious tendency to sweep this awareness “under the rug.”  Problem is, the lump under the rug just keeps getting bigger, and at some point, needs to be dealt with.

Which brings a story from my childhood – there was a period of time my own Mom, when in a rush, would actually do just that. Sweep the dirt on the floor under the nearest rug. Go figure! My sister and I were so embarassed and would have died of mortification if anyone found out.

My Mom was a brilliant woman, and also suffered from severe depression among other problems. There were days when she could not get out of bed, and later in life she commented to me that there were times she was certifiably “crazy” but no-one did anything about it.

It took me years to learn to clean appropriately, and I am still not very domestic. But I did learn one thing: It doesn’t work to simply rearrange the dirt, it needs to be shook out, disposed of, washed up.

I am rambling here, but it just feels good to have trich coming out from “under the rug.”  It’s always been here, just not very acknowledged.

So today is a very good day.

Here’s the link to the announcement on an NIMH webpage:

http://www.nimh.nih.gov/about/organization/ddtr/developmental-trajectories-of-mental-disorders-branch/trajectories-of-behavioral-dysregulation-program.shtml

So have a great day, and remember  – we are all in this together!

Love to all, Christina

Happy Halloween!

Nice that this holiday is falling on a Saturday. Not that I really participate in it, and haven’t for many years. But upon waking today, and seeing the little ghost lights that my husband put up in front of our house, made me remember back to many years of fun.

And… having to get up early the next morning! 

The other thing I was remembering was at one of TLC’s retreats we were all brainstorming on how to get the word out. One suggestion was to have the Halloween week be our awareness week with Trich or Treat as the byline…

That was soundly defeated, as most did not want to align with a holiday that some people have difficulty with – bad enough we have trich, then also adding political problems? No way!

It’s early – about 7am and again I pray that today I am able to get some creative writing in. It is a dream of mine – yet things like the pets need food, the pantry needs cleaning, laundry is ready… get in the way more often than not.

It’s interesting that I can be so disciplined in some areas of my life, and yet bounce all over the place in others.

The wonderful thing is this: throughout it all – I have learned to be aware in a relaxed sort of way – and find that I do have choice today.

And today – in this moment and this one too – I choose not to engage in picking and pulling! 

Now the problem is – how do we compact this lesson that took me years to learn into a much shorter process?  I’m working on it!

Have a wonderful Saturday – and if you celebrate Halloween, have fun and be safe!

Love to all, Christina

Good morning! Last night the TLC board had its monthly meeting, and the main topic of discussion was the renaming of trichotillomania. 

Here’s a little context: it is evident to both the community of sufferers and the clinical/research professionals that work in this field, that the name of trichotillomania needs to be changed.

We’ve known this for years, but now there is a real chance for change. The DSM-V, or the Diagnostic Statistical manual -Version 5, which is the main resource book for mental health diagnostic information, is being updated as I type. It is a huge international project, and the new text should be published in 2012.

There is a move away from Latin and Greek terms, and an attempt to use English words as descriptors more often in the DSM. 

The name currently being vetted for the DSM-V is Hair Pulling Disorder.  Yes, it describes the problem well – but I find it very simplistic and I worry that many will not take it to be as serious a disorder as it really is.

Plus, the initials HPD also currently are used for Histrionic Personality Disorder – just what we DON’T need to be associated with. This bums me out!

I have felt that simply to drop the mania off of trichotillomania would suffice – Trichotillia, as that gives a more discrete name that sounds like it has more medical significance. Not that I am attached to that, either.

So today this is my personal conundrum: what would really be a more effective name change for this troublesome disorder?  

From the very moment that I learned the name of trichotillomania, I have wanted to change it.  Right now I am sort of kicking myself for not focusing more on this problem, and helping to develop a better solution.

Urk. What else – got to get ready for work, so have a great day!

Love, Christina

Oh my, I am so emotional right at this very moment. I have been crying, and am really hurting from some news I received today. Turns out my schedule next year will not enable me to attend an event (my Eighth Grade Reunion) that is so close to my heart.   I

I am writing because it is so incredible to actually feel so sad, and not engage in pulling or picking. For here is the truth of my life: all I have to do to modulate downward the intensity of my emotional distress, is to pull.

If I was to pull, it would dampen the intensity – I could step back from it, and engage in the microcosmic world of sensation. Take a breather from these overwhelming feelings. But that would start a whole sequence of events that I would then have to deal with, but I would not be in such uncomfortable feelings right here and right now. 

One thing I have learned over time is this: It is easier to stay out than to get out of compulsive behavior. Period.

So I am writing. I remember the first time in my twenties when I wrote and got through the impulses instead of pulling. It was a watershed moment, but I didn’t know how to strengthen it. It took another 2 decades to really understand.

What I have learned is to sit with it -cry, rage, whatever just walk through it even if I feel like I will die.

Then and only then do I get some authentic resolution – learn whatever lesson I need to learn, and move on – without damaging my scalp or skin.

I don’t even care if I make sense right now – I just know that its good to get the intense feelings out.

I am just having a rough day, but still and always – grateful that today in this moment I am not trapped in compulsion.

I hope you are having a better day than I am! The wonderful thing is, I do know this will pass, and although it feels like I have a broken heart, the truth is I do not.

Thanks for visiting.

 oodles of love, Christina