Friday, 10 October 2008

Alopecia

In the Summer of 2000, in the same week I found I was pregnant with my daughter, I discovered a patch of bald skin on my scalp, about the size of a small coin. When my husband looked, it turned out I had a few more.

I was told I had alopecia and that it would probably grow back in time. Lots of people have this experience apparently. Any kind of treatment was ruled out because of my pregnancy and my hair continued to fall out slowly. I wept many tears fearing that the worst would happen and I would end up totally bald. I remember when I was 30 weeks pregnant, telling a friend and lifting up my long brown hair to show her the large bare patches. My one week before the birth, I had lost all my hair.

That was over 5 years ago and I still hate the way I look. People tell me that I look beautiful; one dear friend told me that, because I have such an animated face, it doesn't seem important; lots of people I've met in recent years say they can't imagine me with hair; I am even told it suits me! Twice it has been thought of as a deliberate choice, a fashion statement. Initially I coped with it by being very out-going, blasting through my own self-conciousness by opening conversations and putting myself out there. Somehow this has become part of me, a learned behaviour I guess, and I am far more extrovert than before. However, I still avoid having my photo taken and had to steel myself to take the children swimming when I would have to bob about in the learner pool in a swimming hat feeling ugly and obvious. I would never let myself be seen without a head covering, any more than I would go out topless.

I have tried hard to not let it become a taboo subject and I will talk openly with the children about how I feel. But it is still painful when my daughter tells someone that 'All mummy's hair fell out', or little ones look at me in curiousity. I know that others suffer far worse disfigurements and sometimes I feel shallow for caring as much as I do, but I have learned to accept my feelings for what they are.

On one occasion I went to a health spa with my mum and I took the opportunity to have a few swimming technique lessons. I also braved the pool without my swim hat, just to see how it felt. One morning I was powering up and down the water, putting into practice what the coach had been teaching me. My mother overheard two ladies in conversation, clearly perplexed as to why I had no hair. My strength of swimming ruled out chemotherapy. I was rather flattered to hear that they concluded that I was an athlete and had shaved it off to improve my swimming times!

4 comments:

Jane D said...

Have I every told you the story about the little boy without a lower arm that I used to see - he used to tell people that it had been bitten off by a Lion - he loved to see their reaction to this and it helped him to cope - you do what you feel most comfortable with, others can find their best ways to cope with responses they might get. Much love to you x x.

JoVE said...

One of the homeschool families we see often has a similar experience. The dad has it and he has lost ALL his hair. No eyebrows. No eyelashes. I've not personally checked anything else. He seems to be coping well, though it is probably easier for a guy to do the completely bald thing. But apparently it is hard on the eyes. You don't realize how much your eyelashes filter out until you don't have them, I guess.

Gaynor said...

I, too, have lost all my hair (alopecia universalis!) including eyebrows and eyelashes. At the moment my eyebrows have partially grown back. I miss my eyelashes a lot, not only for their filtering, but also because mascara adds such a glamorous touch to make-up!

Kathy said...

Thank you for sharing your struggles...I so admire your courage and strength to persevere. Your transparency speaks such life and encouragement!
Kathy