Health care professionals
The experience of finding out you have alopecia as a child can be made easier by ensuring they don't feel blamed, says Julia Cobb. Her description of her personal experience may prove a useful insight for professionals dealing with children with alopecia.
I discovered my first bald patch just after my 10th birthday. I wasn't too worried about it at first. My mum thought, though, that I should have it checked out and so we went to the dermatologist a few weeks later. Again, I wasn't too worried about it, just curious what the doctor might say. I wasn't prepared for what she did say, though. "It all comes from the 'inside', from the way you're feeling," was her way of explaining to me that she thought alopecia was entirely psychosomatic. "Try not to be so stressed", she said. I took her words to mean 'It's your own fault that you're losing your hair.' I felt at a total loss - I hadn't realised that I had been stressed, so how would I go about not being stressed?
Not entirely happy with the visit to the local dermatologist, my mum took me to a dermatologist in another city who specialised in alopecia. He talked to my mum about my condition like I wasn't in the room. "Basically, if she is still losing her hair in six months time, she will suffer from alopecia for the rest of her life," the doctor said. Talk about putting pressure on somebody. My mum took me to a fancy cafe after the visit and I remember trying not to cry on my cake. I did want to make my hair grow, but I just didn't know how.
In the weeks, months and years following my first visits to dermatologists, to an extent even today at 37, the feelings of powerlessness and guilt stayed with me. I was causing my own hair to fall out! But I wasn't able to make it stop.
Today it seems odd that the first dermatologist placed the responsibility so firmly on me, without offering any further psychological support. If she thought that I was a stressed and anxious little girl, suffering from a purely psychosomatic illness (which I now know not to be the case), why didn't she suggest some sessions with a counsellor?
I hope that things are different today. Being told that they have alopecia shouldn't be a traumatic experience for a child. I would wish for a doctor to be factual but kind, sympathetic without painting too dark a picture, advising their young patients that the illness is part of their lives but it shouldn't rule their lives, and above all I would want a doctor to point out that emotional support - from organisations like Alopecia UK or from a counsellor - is available.
If any professionals would like to add their advice
to this section, we would be very happy to receive it.
Date: 21 June 2007