This year for me marks a significant milestone of 50 years old and most importantly 50 years living with alopecia. I have had alopecia all my life and been through every stage of alopecia areata. Starting with patchy alopecia areata, then alopecia totalis, and now, for the past 30 years, alopecia universalis, total body and head hair loss.  

Decades ago, life as a child with alopecia was a mixture shall I say. I was so fortunate enough to come from a loving and very supportive family.  However my school life was quite the opposite, especially my years at secondary school when unfortunately the bullying began, both mentally and physically.

Mental health was not discussed, or even really heard of, in those days. To say it was tough was an understatement and one day I hope to write a book about my full experiences and what got me through all the bad times. I often think about the positives and negatives of living with alopecia from my lifetime of experiences and would like to share these with everyone..

Positive things to consider

  1. Be YOU.. and believe in YOURSELF. Hair is just dead cells. It’s WHO you are, and not what look like, which is paramount. Focus on all the great things in your life and what you enjoy and are good at. (I’m very good at dancing and running, they are my two main passions). 
  2. Do not let bullies win. Ignore any cruel comments. I believe in what goes around, comes around. Bullies are the ones with the problem, not us. Keep strong and positive. 
  3. Everyone with alopecia is different and has different ways of coping. If you want to wear a wig then absolutely perfect, but equally if you don’t want to wear a wig that is also absolutely perfect! Don’t feel pressured to feel like you have to be like the next person. Make the choices that are right for you!
  4. You don’t have to spend hours doing your hair and don’t have the burden of going to the hairdresser every week and spending loads of money on a style that if you don’t like and cannot easily fix. 
  5. As a woman, I love that I don't have to spend time shaving my legs!
  6. In Egyptian times, it was considered that a bald woman was seen as a sign of beauty. That speaks for itself - bald IS beautiful! 
  7. Never feel intimidated if in a group, women start to talk hair and hairdressers (particularly for what seems like hours!) If someone asks about your hair (and it’s a wig or not) remember that you are in charge of that conversation. It's entirely up to you whether you want to share it with the group or not. (Don’t feel pressured). 
  8. For wig wearers, there are loads of amazing wigs available and credit and praise goes to all the wonderful wig makers and manufacturers that create the most beautiful wigs. When I was younger, the range was extremely limited and quality used to be very poor. Now I smile every time someone says to me, “Your hair is gorgeous, where do you get it done?”. 

The not-so-positive things that still get me down after all these years  

  1. I am still surprised that in 2023 there is still no cure for alopecia 
  2. Alopecia is still treated as a cosmetic condition. Alopecia affects every aspect of a person's life, both mentally and physically, and should not be disregarded or dismissed as 'just hair'.  
  3. NHS wig provision is not what it needs to be. I think there should be more help for wig wearers. The standard 2 synthetic wigs per year is not enough when the life expectancy for a synthetic fibre wig is 2-3 months. 

To bring this back to a more positive conclusion, I think it is fantastic that there is so much research happening around the world to find a cure. It is also amazing there is a great network of support groups available all over the world, including the groups run by Alopecia UK. Alopecia UK didn't exist when I was younger so it's brilliant to now see so much happening for those with alopecia in terms of support, awareness research. 

I still find it quite surprising when I do tell some friends about my condition that they have never heard of alopecia. So to do my bit to raise awareness, I have become a Charity Champion and I will be doing a half marathon in September (Alopecia Awareness Month). If anyone would like to support my awareness and fundraising efforts, you can find my online page here

My final advice to anyone reading is to keep strong, enjoy life, and remember, Bald is Beautiful.  

If, like Jayne, you would like to get involved in raising awareness and funds for Alopecia UK this September, you can find out more here