Alopecia hats and head covers, this is my hairloss story.

March 27, 2019

I was 8 years old when I developed alopecia areata which caused patches of varying sizes and number to appear in my hair. At the time there was no awareness of the condition, if I or my family spoke to anybody about it we had to explain what it was because people didn't know by its name and all the doctor could do was tell us nothing could be done about it. Over the years I learnt to live with it by hiding it - only family and a few close friends knew what I had, I never wanted to discuss it with anybody and only returned to the GP once in my teens to find out about developments. All they were able to do was give me a cream to try which ended up not working and would have damaged my skin if I had remained using it. A pattern developed with my alopecia, I would get patches, they would regrow and then develop somewhere else but I was always able to cover it up so after 21 years of dealing with it in the same way it was quite a shock for it to rapidly change to alopecia universalis.

I noticed around August 2016 that I was getting a couple of large patches. I'd dealt with large patches before so they were more of an annoyance than anything (I learnt long ago that stressing about it only makes the situation worse) but what did concern me was that it was still falling out at quite a drastic rate and by December I could no longer hide it and still it was coming out. Not expecting much, I went to see the doctor, just wanting to find out what my options were and what I got was a doctor who was extremely rude, ill-informed and had an unhelpful attitude, which made the situation so much worse. My appointment was before work and when I came in that day I just burst into tears (and I am not somebody who cries easily) - I just didn't know what to do anymore, I had lost control of my own body, what I looked like had drastically changed and I felt like I was losing my identity and a part of who I was but I also felt that I was being ridiculous because it was only hair and I didn't deserve to be so upset and affected by it.
The support I got from everybody was incredible. Everybody in the office, friends outside of work, family and the people I contacted at Alopecia UK and Hipheadwear have all been amazing and I do not have the words to describe how much I will forever be grateful to everybody that was (and still are) there for me. They taught me not to be embarrassed or ashamed and, most importantly, that I am still me. I've been to a few Alopecia UK events and meetings now which have helped massively, I'd not knowingly met somebody else with alopecia before and talking to people who have experience with what it's like to go through is invaluable and I will continue to be involved with the charity. Doing the photos for Sabine helped too. She has a wide variety and so many different styles of bandanas for hair loss, alopecia hats, turbans . She was looking for somebody to model her headgear for alopecians and cancer patients, at about the time my hair was drastically coming out. I’d already bought an All Seasons Bandana for hair loss for my work party and a Jersey with a Knot for everyday use so I already knew I liked the headwear for alopecia sufferers, so it was great to go along. It helped add a bit of fun to what I was going through trying all the different styles and designs.

By the March my confidence had picked up massively and there was so little left of my hair that I shaved anything that was remaining. It gave me some control back and I was ready for it to happen but it was still such a bizarre sensation. I am now much happier in myself, I still miss my hair but I've accepted what's happened. I’m happy to give things a try (currently doing DCP treatment) but I’m pretty much going with the flow. There are definite upsides to no hair (not having to wash it before work or after swimming, not having to shave...) but I still get down days and there are disadvantages too, you don’t realise how functional your hair is until you lose it. Plus there are little things like having my sister play with my hair or being able to tie it up after a day's work that can’t happen anymore. Ending on a happy note though, I know whatever I’m feeling or going through, I have a great support network around me :)





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