Mel's story

When Amanda asked me to write my story for her page, I never dreamed that it would be so hard to try and put it into words but I have finally decided to give it a go, so here goes.

For you to understand where I am today I have to tell you a little background information on me and my life. My parents had both passed away before I reached my 15th B'day. My father when I was 11 in 1983, when I was in year 7 (who as of yesterday has been dead for 18 long years) and my mum when I was 14 in 1986, when I was in year 10.

After my parents died we had a a fair few family problems and I was passed on to my youngest sister, who reminded me every day that I was not wanted and that she only had me because no-one else wanted me. She was forever telling me to find somewhere else to live and to cut a long story short treated me like the lowest life form on earth and made my life a living hell. So I left as soon as I could which was just before my 19th Birthday in 1990 and got on with my life without any family.

Several years later in 1994 I developed a second case of glandular fever that lasted for over 2 years and gave me a very bad case of a liver and spleen infection and I was confined to bed for the first few months driving myself and everyone around me mad. At this time I had not seen my family for over 4 years. At the end of the first six months of my illness I developed a very deep and nasty cycle of depression. I was put on anti depressants and started seeing the first of many psychiatrist. At this time I did not have Trich.

From as far back as I can remember I have always been a hair curler and when I was tired, stressed or sick I would do this to comfort myself. I also sucked my thumb for quite a few years until I was about 10 or so. I also went through a stage of what is now known as an OCD and used to wash my hands religiously until they were so dry and cracked that they would bleed. Thankfully I grew out of that before my teens.

When I was finally beginning to get over my illness in 1996 my hair started to fall out, I remember complaining to my doctor that it never fell out when I was sick, but waited until I was getting healthy and was reassured that like my depression it was normal after being sick for so long.

At the beginning of 1996 my sister somehow managed to obtain my phone number from work and rang me on her birthday, it was a day I will never forget. I was shaking so badly after that phone call that I didn't stop for several hours. I was not at all happy but eventually decided to give having a relationship with her a try but she was still as controlling as ever and wanted to control everything in my life and had not changed at all.

In October 1996 I crossed the line between my hair falling out and pulling my hair out. The only thing I can think of is that I was unable to comfort myself by curling my hair so began pulling it out and so began the vicious cycle of Trich and feeling guilty when I pulled and pulling more.

I believe that I came across a name for Trich in 1998 in a very small article in a magazine I was reading, I was so happy to know that it had a name. In 1999 I found the TLC on the Internet and have never looked back. The literature they sent me made me feel so relieved to know that I wasn't alone and the only one out there dealing with this monster on a day to day basis. When I got on my first E-mail support group I cried and was so overwhelmed by the fact that there were people out there offering support and friendship to others with the same condition.

It wasn't until July 1999 that I knew I wanted to stop, I had been to see a behavioural therapist nurse 6 months before and was getting desperate waiting to get in. Finally I got in to see her and had a new psychiatrist to boot. The psychiatrist helped me to deal with my sister and the control she had on me although I still have a long way to go on that score I haven't spoken with her since July 12th 1999 when I finally had the courage to stand up to her and she didn't like it and said if I hung up on her (which I did because I was 27 and didn't need to put up with her yelling at me because I was trying to build a relationship with my older brother who she despised) she would never talk to me again. I must admit I felt a tremendous relief when I hung up knowing that if she decided not to talk to me for that then it was all on her shoulders and for once could see that it wasn't my fault.

My behavioural therapist had never come across Trich before so it was a learning experience for us both and I printed a lot of useful information of the Internet to give to her so we could learn about it together. Around this time my sister-in-law also found a support group for Trich based in Adelaide and I decided to give them a go, although was a bit put off by the fact that they told her that I shouldn't be seeking treatment at the Flinders Hospital as they were useless and wouldn't be able to help me. In the end I never went to the support group until May last year and it was a big let down. I was so glad that I was in recovery (so to speak) and wasn't feeling down and upset about my Trich otherwise I don't know what I would have done. The support groups was definitely not what I expected at all. I was greatly disappointed.

My behavioural therapist and I decided that Trich had become a habit for me, and that I didn't really have any of the urges that most people associate with Trich. So we decided to try habit reversal and even though I was skeptical at first it really did work for me. I saw her once a week for several weeks and had several task to complete and learnt how to deal with my anxiety and stress differently. I also learnt several things to do with my hands when I found myself reaching for my head, which soon became second nature. At this time I was more aware of my Trich and at some stage it had become a conscious thing rather than the unconscious trances I used to fall into before. After several weeks we decided to take photographs to keep track of my progress/slip ups and had them taken at the hospital. My first photo's were taken on the 1st September 1999 and I had several more sets taken along the way.

Fortunately for me I had wonderful support from my fiancee' and his family and this helped me to recover tremendously. I am now 21 months pull free and that will be 22 on the 1st of July. It has been a long hard road to become pull free and the first few months were definitely the hardest. Although I never had and still don't have the urges that most of you get. Once my hair started growing back I have been left with a tremendously itchy head (something I also never had when pulling) and that drives me crazy. It's not the kind of itch that makes you want to pull but if I give in to it, it just goes to loosen and weaken my hair so I have been trying different things for that. If you have any recommendations I am open to anything that will help.

The most important thing I learnt during my behavioural therapy is that it is okay to have slip ups, and it's not the end of the world. I also found keeping a diary when I was feeling particular down or upset helped me tremendously. When I was in high school I used to write a lot of very deep poetry and I must have got out a lot of my emotions that way, so it was nice to start writing again. It is a good way for me to cope with day to day life. I still have depression and I am still on anti depressants but the Trich never made me feel worse, in fact I think that it has made me a stronger person for I now know what I want to do with my life and know how important it is to offer my support to others. I can definitely say that anti depressants never helped me with my Trich in fact I was being weaned of my medication when it started.

Overall I just want to say that everyone's opinion on Trich is right, there is no right or wrong way to feel about it. Everyone sees it differently to another person and what works for some might not work for others. So when you are out there in a support group, whether it be online or off please remember to be open to all opinions and not flame or put people down for theirs.

I would also like to say that living in Australia I have found the options and support groups are virtually non existent so I decided to start an online support group for Australian sufferers of Trich to bond together and relate to each other. We still frequent all the other support groups available but find it nice to have something closer to home. If you are Australian and interested in joining our group please feel free to E-mail me mel@senet.com.au for more information. While we are currently just an online support group we intend to expand and hope to have a centre running similar to TLC and to have real life support group meetings when we get enough members for a state. I am also going to be doing a Bachelor of Behavioural Science next year and will hopefully become a psychologist in a few years time and be able to offer more to people than I already am. At the moment I am in the process of building a web site and will let Amanda know the link when that happens.

Mel