Personal Stories

Paddy’s Story

International Alopecia Day, 4 August 2012

Until June 2011, to me the word Alopecia simply meant thinning hair. Well, was I ever wrong! In June 2011, my own hair started to thin and within three weeks I had practically no head hair. At first, it was all like a bad dream. You look in the mirror and for a moment you don’t recognise the person looking back at you. Then you recognise yourself but your scalp feels different. Your head feels cold even though you know there is no reason for the cold, except of course that there are large patches on your head with no hair cover.

Within a couple of weeks, I knew I had to do something and my first step was to make an appointment with a hairdresser who specialised in looking after people with hair loss. She confirmed that I had alopecia, but since the hair loss was so rapid, she organised a wig for me immediately. I walked into the appointment with my scraggy bit of hair and I left, totally self-conscious, with my new wig. It was one of those surreal moments when you really believe it will all be OK in the morning, but morning came and I had even less hair. With the wig on, few could have realised what was happening to me.

Within a few months, I had absolutely no hair on my body. Until all this happened, I never realised the importance of hair but hair has many functions including protection, regulation of body temperature, facilitation of evaporation of perspiration and also acts as a sense organ. Translated into day-to-day life, the loss of hair means that you can no longer regulate your body temperature, you have to be more careful about the soaps and detergents you use and you need to consider the clothes that you wear in case they irritate the unprotected skin.

Beyond this, the condition can be quite painful. On a very cold day, you can’t imagine the pain the lack of nasal hair causes. Without eyelashes or eyebrows, a bright sunny day can become the enemy. I love to walk, but I haven’t yet figured out how best to protect against the sun. Sun screen is an essential but as it is being absorbed, it rolls down into my eyes. There is just nothing to hold it back, away from the eye. And of course, there is a similar problem with rain and perspiration.

My journey with alopecia is relatively short. Short or not, it has been a roller coaster of emotion and an eye-opener about how many of us view others and indeed how we are viewed. The celebrity culture we’re in at the moment gives the impression that perfection and happiness come with the best clothes, flashiest car, the biggest bank account and of course, with the right hair and makeup, you’ll win the heart of your prince or princess. I never bought into the celebrity culture, but now, when I see a glossy magazine, I wonder what’s behind our need to see all these perfect looking individuals and wonder if our world would fall apart if imperfection and unhappiness were actually portrayed for us in the media. In fact, I think it would really help if just once in a while we read or saw some people in the news who were having a tough time too!

During the last year, I’ve spent considerable time trying to learn something about this condition. Alopecia has no known cause and no known cure. It affects men and women of all ages, backgrounds, and cultures. Many believe it is stress related but this is not proven. Others suggest it is diet related, but again this is not proven. There are different levels of alopecia from thinning hair to total hair loss, and one can have partial, total or no recovery. The saying one size fits all just doesn’t apply to this condition. Who can understand why a body mistakes its own healthy hair as something bad and kills it. A tingle works its way through the body as the hair is killed, and you know that the new hair has just died. It is like a silent war taking place inside you and there is nothing to be done to bring about a ceasefire.

I can’t figure out if it s gift from nature to help us understand the complications of life. If we consider the body to be like a country, family, or institution, then it is easy to see how this kind of situation arises where silently one part of the country, family or institution attacks another part, seemingly for no reason but with serious consequences. Thinking about alopecia in this way leads me to question if a wig is some sort of cover up, a way for me to run from the challenge that the condition might be affording me. Wearing the wig, however, helps me to look normal in a group and it helps others feel comfortable in my company. It hides the fact that I have no hair but it is only hiding.

Keeping up the pretence is difficult for me and the daily wearing of the wig is uncomfortable and tiresome. I just don’t like it, so I decided a couple of months ago not to bother with it as much. Since making that decision, I find I am more relaxed and more at peace. Neighbours and friends have grown used to the new me and are wonderful. Initially many thought I was undergoing chemotherapy, but since I explained, they are fantastic. Actually, I believe they are closer to me now because they see someone vulnerable and struggling just like them.

On Saturday, 4 August 2012, the family and friends of people living with alopecia will make efforts to publicise this condition and hopefully encourage the medical and social research which will help and support everyone concerned.

Paddy Pender