Why Talk About Trichotillomania?

For me there are three answers to this question. First, the hardest thing about having trichotillomania is the intense secrecy attached to it. As with all secrets the more time that passes without your secret being revealed the deeper your secret becomes imbedded within you. For me this secrecy only served as a feeder to my trichotillomania which worsened as the years passed. In fact my trichotillomania started when I was eleven years old and I turned forty before I decided to bring my secret completely into the open. Once I started talking I found that I couldn’t stop, and as I continue talking, I realise that I am looking deeper and deeper into myself and as a result of this am being really honest about my trichotillomania. The necessity for honesty became the second hardest aspect of facing up to my trichotillomania. I know that to simply say I have trichotillomania is not enough, as it is my behaviour whilst carrying out the trichotillomania and the feelings and visual impact (the bald and sore patches)that I am left with afterwards that have the most profound effect on me. The third hardest aspect was in deciding how I want to define myself. Do I want to be a victim suffering from trichotillomania? Or do I want to be a survivor dealing with trichotillomania? I choose that I will be the latter. A survivor dealing with trichotillomania.
My decision to write my memoirs was borne from my honesty and I accept that some of the details of my trichotillomania behaviour are graphic. My reasons for being so honest and graphic are my desire to leave no stone of my experience unturned so that others who carry out the same or similar trichotillomania behaviour know that they are not alone, and that their own honesty may inspire them to become trichotillomania survivors.

The Safe Room

My therapist unlocks a door to a bright airy room. This is to be my therapy room and, to prevent me from having to wait in the corridor, will be unlocked ready for me every week .At the far end of the room there are two soft chairs and a large plant in front of a large window which looks out into a private garden. There is also a large table and two hard backed chairs and it is here that we sit. On the table are many art tools which include pastels, paints, crayons, pencils, charcoals, clay, paint brushes, water colours and oils. There is also a huge stack of paper.
As this is my first art therapy session half the time is taken up with administration. My therapist explains to me how long my session will run to each week (one hour) and that my therapy will always be held on a Wednesday at 9am. I also sign some documents relating to the art work that I will be doing. The documents explain that all my art work belongs to me, but during my treatment it must remain at the day hospital where it will be kept secure. When my treatment is over, and if I so wish, I may take the artwork home with me.
Then we start talking. My therapist tells me that she appreciates that I may find it difficult to talk to her as she is a stranger and there is no element of trust established between us yet. She tells me that I should think of the room as a safe place, my safe place where I can say anything about absolutely anything, where I can express myself freely.
I don’t know where to start. My therapist replies that it does not matter where I start and this encourages me. I tell her that I hate having trichotillomania and I hate the other self harming that I do to myself, both of which feel stronger than me as they have such a devastating hold over me.

The Fist Day Of Therapy.

On the morning of my first therapy appointment I feel physically sick as I am so nervous and my hands are shaking. So that I do not have to walk through the building on my own my therapist has told me that she will wait for me in the reception area of the day hospital.
I feel embarrassed and a little ashamed as I approach the doors of the building. My embarrassment is based on vanity, I am worried that I will see someone that I know, or worse, someone I know will see me, without me realising it enter the building . The Mental Health building. My shame is based on the fact that I know that I cannot make myself better on my own, that my problems have escalated to such a point that I have asked professionals to help me, help me with this trichotillomania hell.
I dismiss these thoughts from my head as I convince myself that as always I am so smartly dressed, if anyone I know does see me they would probably assume that I am attending a business meeting , particularly as I am being met in reception.
As I push the large glass doors open I feel the shame flush my face, to my relief I see my therapist waiting for me, as she said she would.
As I walk with my therapist through reception I expect to see lots of people, patients I suppose and the prospect of this frightens me. However I only see a couple of people who return the smiles that I give them. I kid myself that these people think I am an important official visitor to the day hospital. A cleaner is vacuuming the carpets and stops her work to let us pass, she does not look at me, she appears to avert her eyes as I walk past her, perhaps out of respect for my privacy, I can sense that she realises I am a patient, she looks like she has seen it all before.

The Assessment Result

I receive a phone call from my assessor at the beginning of the last week of September 2008. She tells me that my case has been successfully presented to the psychiatrist and the rest of the team and a decision on my treatment has been reached.
I am offered weekly treatment, lasting a year in the form of art therapy. I immediately accept as I am anxious for any sort of treatment to begin. The assessor then arranges to meet me a couple of days later so that she can introduce me to my therapist before my treatment starts.
I am filled with mixed emotions after this phone call. My very first thought is of ridicule and disappointment at the decision to give me art therapy. I wonder what use doing a load of silly drawings will do me. My next reaction is one of smugness as I tell myself that it must have been noticed how artistic I am to have been offered art therapy in the first place.
I talk it all over with my husband, who as always listens with care and attention. I realise that I feel afraid now, knowing that I am now in the “system” and knowing that it has been recognised that I am unwell and need treatment.
But my desire to claw my way out of the hell that is trichotillomania far outweighs my fear and gives me the strength to approach the treatment with an open mind.

The Assessment cont.

After three weeks she tells me that she has enough information to present to the team. She tells me that due to staff holidays, general workloads and other team commitments I will not hear anything for more than a month.
As I leave I tell her that I desperately need help and ask her to put as good a case as she can forward for me. I tell her that I am prepared to try anything as I am serious about getting help. I tell her I know that even though treatment is free due to our National Health Service, I understand that it still costs and is very expensive to deliver to patients.
I assure her that I really do need and want treatment and that I will attend every appointment given to me.
As she holds the door open for me to leave she smiles and nods her head at me.
The intervening weeks seem to pass very slowly. I am tense and on edge as I wait to hear if I am going to be offered any help.
Pops (my father-in-law) buys me a complicated three dimensional puzzle to keep me occupied whilst I am waiting.
My husband is very supportive. He tells me that there is nothing we can do but wait and as he constantly comforts and reassures me he tells me how brave I am, how proud of me he is and how very much he loves me.

The Assessment

I arrive at the Day Hospital where I am met by a very nice lady who introduces herself as my assessor as she leads me to a private room. She explains the assessment process and that she will be taking notes all the while she is talking with me. She says that it is important that I know this as she does not want me to wonder what she is writing or to think that she is not listening to me whilst she is writing. She asks me lots of questions, a large proportion of which relate to my childhood, my mother, my siblings and the rest of my extended family. Some of her questions are in relation to communication and social skills, in both childhood and adulthood.
She apologises at times for the awkwardness and difficulty of some of her questions. Again she explains, the reason for this is that she has to gather as much information as possible during the assessment to enable her to present my case to the psychiatrist and the rest of the team. The purpose of this, she further explains is to present such a strong case so that I will qualify for not only help but the right sort of help.
I thought that my doctor’s referral would guarantee me help, I did not realise that I would have to meet a criteria for help to be offered.
Considering this I know that I will have to put all my fears about talking to a stranger aside, confide in her, tell her the truth, as I have done with my doctor about all of my problems along with the trichotillomania and self harm.
I feel so vulnerable and scared, but also I feel a determination. I desperately want help and I know that I must get it.

The Trichotillomania Referral

A short time after writing to my doctor I make an appointment to talk things over with her. I don’t actually have to talk much at the appointment as I have said so much, and in so much detail in my letters to her.
I agree with her decision to refer me to the Community Mental Health Team (CMHT), at this stage I have no idea what type of treatment is available or may be offered to me. I am just glad to be referred because I feel so out of control yet at the same time totally numb. The only thing that I am certain of is that I need and want help.
A few weeks pass and I receive a telephone call from the CMHT inviting me to attend an assessment. I immediately accept and am told that the assessment process will be for one hour a week over a three to four week period starting at the end of July 2008.
On the day of my first appointment I am so nervous I feel physically sick because I am dreading the thought of telling a stranger the intimate details of my life that have brought me to this place.

The Numbness Of Trichotillomania

I don’t feel anything during any session. I feel no pain or discomfort even, at pulling out my hair and picking at my skin. During this time I am not aware of anything around me, I don’t hear general everyday noises like traffic passing my house or people talking on the pavement outside. It is as if I am not really here at all, as if I am just floating along.
Weightless. Voiceless. Silent. Numb.
I suppose I am in a trance like state with my only focus being the self harm I am carrying out. This trichotillomania.
Then I stop.
I have no idea what makes me stop, indeed I am not consciously aware of making the decision to stop. I just do.
Then I feel the pain.
It is the first of my senses to return. My brain starts to recognise my pain and it screams at my body. My head is throbbing and my genitalia feels as if it is burning.
Almost immediately I notice the debris, so much hair, everywhere, over my clothes, on the furniture, in the bathroom basin below the mirror, wherever I have gone in my trance like state there is debris.
Often my fingertips are smeared with blood. I clean myself up as best as I can, it is difficult to clean my genitalia as it is so sore.I am truly exhausted now. I am always exhausted after a session and I usually start crying, at what I have done, then I usually lie down and fall asleep

More Intimate Truths About Trichotillomania

About ten years ago I added a new dimension to the pubic hair pulling by really picking at the skin in this area.
Because of the years of self harm I have a lot of scars in this area, and during a session I examine and pick at this scar tissue along with any blocked hair follicles I find.
Five years ago this really intensified and I became more and more intrusive in this area, using an angle poise lamp and a mirror to illuminate the area.In reality I know that they are blocked with sweat, talcum powder and soap, but in my head, during a session I believe that they are full of all that is bad about me. All my madness, my crazy insanity. So, I pick at them, sometimes using a fine sewing needle in an attempt to pierce them so that I can squeeze their contents out. Most of the time I am unsuccessful and my attempts cause the area to bleed and become infected. When I am successful and the inside of these spots are squeezed out I am very satisfied, and as I examine the gunk that has been expelled between my fingertips I believe that I am right, that I have successfully removed a little piece of the evil, badness and insanity that is inside of me.

Intimate Truths About Trichotillomania

It is not always the hair on my head that I pull, I also habitually pull the pubic hair from my armpits and my genitalia.
Because I shave my armpits the hair is short and stubbly, so I use tweezers to grip the hair so that I can pull it out. I also feel my armpits for any blocked hair follicles and tiny imperfections. Sometimes I can actually see these by looking in the mirror. I use hairpins to try to squeeze out the blocked hair follicle. I also try to remove the actual new hair growth before it has broken through the skin.
Again I am searching for the right hair, the one with the good root, and when I do find it I destroy it.


My other main area of intense hair pulling and skin picking is my genitalia. I have self harmed in this area since hair first appeared ,when I reached puberty and about six months after I started pulling the hair on my head. At first I used mother’s tweezers to remove the pubic hair, but as the years passed I became expert at pulling the hairs using the tweezers and my finger tips.

Further Truths About Trichotillomania

Again, if there is a good root attached I will examine it and then either destroy it immediately or place it intact on the mirror whilst I search for more. Sometimes I inadvertently leave the hairs for too long on the mirror, my leg or whatever surface I am using. This results in the hair root drying out leaving the root bulb stuck to the surface that I have laid it upon.This prevents me from destroying the root myself and leaves me feeling disappointed and a failure.
On rare occasions I pull a hair that is so big and bulbous it actually has blood on the tip of it. This fascinates me and I spend a long time examining a root like this. I trace the bloody root bulb across the back of my hand, to see if it will leave a tiny trail of blood. Sometimes it does, which just adds to my fascination. When the blood source is exhausted I set about removing the root bulb from the hair shaft in my usual fashion.
Of course during a session there are many many hairs that I pull out without their roots attached. I am completely disinterested in these and immediately discard them.

More Truths About Trichotillomania

Sometimes, as soon as I pull a hair with a good root on it I destroy it immediately.
Other times I wait until I have a collection of hair with good roots lined up on the mirror, my leg, or whatever surface I’m using, and only when I feel I have enough with good roots attached do I start to destroy them. I destroy them by holding the hair between the fingers of my left hand and pulling the root off between the pinched finger and thumb of my right hand. I roll the severed root between my fingers, feeling its texture, then I throw it away. I don’t have any particular place to discard the destroyed hair and root, I just rub the debris of my fingertips and let it fall wherever.
Sometimes when feeling for the right hair to pull I can also feel shorter,stubbly hairs, the regrowth of previous pulling sessions. Finding these prompt me to move to the bathroom mirror where I use a comb to part my hair to help me to locate these coarse stubbly hairs, and when I do I use tweezers to remove the hairs.I never recognise myself in the mirror, it is as if I am faceless.

The Truth About Trichotillomania

My hair pulling sessions range from about 50 minutes, which are concentrated and intense, to sessions which last for several continuous hours. Sometimes it lasts all day, which involves several intense sessions continually throughout the day.
My areas 0f trichotillomania and self harm also vary.When pulling the hair on my head I could be sitting on the couch in the lounge or sitting in my bedroom. I never pull in clumps, I always pull individually hair by hair. I immediately check each individual hair I have pulled. What I’m looking for is a hair was a good root. Sometimes I know I’ve been successful in this as I can feel the distinguishing popping sound that a hair with a good root makes as it is being pulled. Once I have successfully got one of these good hairs I will hold it in the tip of my fingers at the opposite end to the root. I watch as the weight of the root makes the hair bends downwards. Then I lay the hair down, with the root still attached on any surface that is near to me, this could be my leg, a mirror or the edge of the table. The roots sticks to whichever surface I use, and I leave it there until I’m ready to destroy it.

Letters cont.

I retreat further and further into myself. My trichotillomania and self harm are getting much worse as each day passes. My body is sore from all the hair pulling and skin picking. I have caused an infection around my genitalia, from all the picking. My Dr. Gives me antibiotics.
I feel so ashamed as a drift around a my own little world.
One day I start writing to my Dr.
At first my letters tell her how miserable I am and how I am struggling with the trichotillomania and self harm. Once I start writing to her it's hard to stop, and as I continue to write ,my letters become more graphic. I start to tell everything, the real truth about what I do, how desperate it makes me feel.
Now I’m going to tell you.More often than not I don’t know what triggers me to start a pulling session. I can be anxious, tired, angry, happy or sad. A lot of the time I just feel numb, isolated and afraid. I’m always afraid of the same thing, the madness which I’ve been told all my life I have and which I believe is as much part of me as the trichotillomania and self harm. I feel trapped in a vicious circle.

Letters

In February 2008 I receive some shocking news.
After a silence of five years my brother makes contact with me. However, this is not a reconciliation, my brother is saying goodbye to me. He is leaving. He is emigrating with his wife and children in two weeks’ time.
I’m so shocked I put the phone down on them.
I am crying, really sobbing. My husband tries to comfort me, but I’m inconsolable. An hour passes and I feel I must call my brother back. He tells me he will come to see me, to say goodbye in person. I ask him why does he want to do that considering he hasn’t been in contact for the last five years. He says he is saying goodbye to lots of people and he is doing so to draw a line under everything here, in this country.
I can hardly speak, I’m sobbing uncontrollably.
I tell him not to come, but I can’t bear it. I tell him I love him and that I thought about him every day the five years. He says he will come to say goodbye, but I repeat my plea for him not to.
I really can’t bear it.
I write him a letter. I write that I admire his strength to take his family away to a better life. I write I love him and wherever he is a I will always love him. He is my brother and he will always be my, heart.
I post the letter, I hear nothing back.
Two weeks pass and I know he has now gone.I become obsessed about his immigration. My shock is compounded into disbelief because he was always Mother’s favourite. I am convinced Mother has caused this emigration.

More visits to the doctor

In 1998 I am at my doctor's surgery attending one of the many appointments I continually make for myself. I still desperately want to confide in her about my trichotillomania, and as I wait for my name to be called I have no idea that today is the day that I am finally going to tell her.

When my name is called I still have no idea that I am actually going to be brave enough to tell her.

But I do.

Before my doctor has chance to sit down I stand in front of her and pull my trousers and underwear down and blurt out the words that I am terrified to say. I say that I cannot stop pulling my pubic hair out and I cannot stop pulling the hair on my head out either. I tell my doctor that I have done this since I turned eleven years old, and that she is the first person that I have ever told.

I pull my clothes back on and sit in front of my doctor.

She is very kind and thanks me for telling her, adding that she realises that it is very brave of me to do so.

But I am not really listening to her, because of my shame.

I feel so very ashamed that I cannot look her in the eye.

My shame runs so deep inside of me that despite the fact that I will see my doctor many ,many times in the coming months and years, I never really talk to her about it again.

In fact unbekown to me at the time, ten years will pass before I finally do ask my doctor to help me.

The Doctor

In 1990 I am a passenger involved in a serious road traffic accident. Because of the injuries I receive from this accident I have to attend my doctor's surgery for treatment. As time passes I come to accept my permanent injuries and the medications that I have to take in relation to them.
However, my visits to my doctor do not lessen.
I continue to use my accident my accident injuries as opportunities to secure appointments with my doctor. A few of these appointments are in relation to my accident injuries.
Most are not.
I attend these appointments to try to establish a contact with my doctor.
I desperately want to confide in her about my trichotillomania and self harm, but I don't know where to begin.
After a life time of Mother and my family telling me I am mad I can't make a decision on whether to confide in my doctor or not.
I am not brave enough.
I am certain that my doctor will diagnose me as mad and that she will be repulsed by me and by what I do.
I often just sit in front of my doctor and cry.
My tears are genuine.
I desperately want her to work it out.
To come to the conclusion that I have trichotillomania and I self harm .
I want her to use her brilliance as a doctor to work this out for herself, so that I don't have to face the shame of saying the words out loud.
But how can she work it out? She is not psychic, she cannot see inside my head and read my thoughts.
I sit before my doctor, I am perfectly groomed, cosmetics perfectly applied, clothes and accessories perfectly coordinated.
How could she possibly know?
I am very careful about my appearance, it is my suit of armour.
I wear it every day so that people cannot reach me or break through to me.
Naturally, my doctor diagnoses me as depressed.
She is right.
I am very depressed, but the depression is just on the surface, the reality runs much deeper.
Some days I feel detached from my body and I see myself as others do.
Some people say that I am unapproachable and I can see this for myself when I am feeling this detachment.
I get a perverse feeling of safety from this, knowing that no one can get near to me. But I also get a huge sense of sadness as the price I pay for this self imposed safety is extreme isolation and loneliness.
The feelings of isolation and loneliness are so intense they are debilitating. They make me feel as if I belong to nothing and I experience the sensation of watching life and the world go by without participating in it in any way.
Eventually my feelings of isolation and loneliness give way to a gradually increasing numbness,until I am so numb that I am incapable of feeling anything.
Totally numb,no one can reach out to me, touch me, make me laugh, engage me in conversation or try to help me.
But still I continue to make and attend appointments with my doctor, and sit before her in the desperate hope that she will be able to reach out to me, to find a chink in my armour.
But, yet again, I leave her consulting rooms with my secrets intact, and the belief that I am mad creates another seemingly impenetrable barrier between her and me.

To The Reader

This is a true account of living with trichotillomania.
If you are a fellow sufferer, I hope that you will come to understand that your trauma is exacerbated by your secrecy concerning trichotillomania.
It is very frightening to reveal your secret, but once you do you can become more open to possibilities to lessen your symptoms and improve the quality of your life.
KNOW THAT YOU ARE VERY BRAVE IN BEING HONEST WITH YOURSELF.
If you are reading this and you don't have trichotillomania, then I applaud your compassion and intellect in your desire to read about this subject matter and help to bring it out into the open.