Having lived with Alopecia Universalis for 18 months I now feel I have gone through 3 major phases of my life and come out the other side a much stronger and better person. Loosing my hair on my head in two weeks at the fine old age of 42 was somewhat of a shock and I spent the first six moths as follows:


Months 1 to 6

Total panic, shock then sheer desperation and finally depression! The “why” me questions could not be answered by anyone. Doctors can not tell you a thing about the illness, the specialist you pay good money for can’t tell you why and even worse is to come you are told it will never grow back either! This is something I never even contemplated to be honest and when I was told it was sheer disbelief. Here I am sat at the Nuffield with my partner being told my hair will never grow back, I was shattered by this news. In less than 2 weeks my whole world had been turned upside down. I knew my father and brothers suffered hair loss but never associated any of this to alopecia and I certainly didn’t think it would ever affect me. I was told my only option was to wear a WIG.


We left the hospital and when we got home I took the decision to shave the last few strands of hair off my head. I couldn’t stand the though of everyday waking up with hairs in my face, in my eye’s, mouth and up my nose, brushing my hair, only to see it fall into the sink. No I had had 2 weeks of this and though no more I had had enough.


I then had the next hurdle to overcome WORK, how on earth was I going to go back to work with no hair on my head? This thought sent me into a sheer panic, what will they think, I can’t walk into my office with no hair. Oh my God was all I could think about. My friends and family had spent 2 weeks going through the hair loss with me but no one at work knew what had happened as it was over the Christmas holidays. I decided I would get a wig thinking that would answer all my prayers, I would wear that and no one would ever know I had lost me hair. How stupid was I. I got a cheap and cheerful wig plonked it on my head to find it itched like mad; it was so uncomfortable it made me cry at the thought of wearing it. By this time the depression had kicked in as I didn’t know what on earth to do next. I looked on the internet for help and advice but there are not many sites designed to help and there was no one in my area that I could turn to for help either. I couldn’t stay off work forever so I managed to find some bandanas I could wear and eventually I went back to work. 3 weeks after suffering my hair loss.


I walked into my office with my trendy bandana on and everyone was really pleased to see me and very supportive too. I felt like a huge weight had been lifted off my shoulder and I was getting somewhere now. It didn’t last for long though.


My friends, family and work colleagues were all fine and accepted without any problems me as I was, but I couldn’t accept what had happened. Everyday I would look in the mirror and see someone else staring back at me. No emotion, no smiles, nothing. It was me but it wasn’t me. All I saw was a blank expressionless face staring back at me. I could not recognise who I was. I seemed to have no identity at all now. I hated myself which I know you are saying is silly and I was probably over reacting but I literally hated myself. To make things worse the reaming hair on my body started to fall out too. My depression worsened and I was hitting rock bottom. My first experience of a wig had put me off them for life I was getting very fed up with hiding away under my bandanas. It was just a ridiculous situation to be in and no one knew how to help me and I didn’t know how to help myself. The following few months was like living in no mans land I was just existing.


I decided to ditch the bandanas and go with the Gail Porter approach. I got stares from lots of people and stupid remarks and questions too but it made me feel better as I could actually forget I had this stupid illness or long periods of time.


Months 6 to 12


After spending my first 6 month in somewhat of a wilderness I was told about a support group that was being set up in Sunderland. I contacted them and the first meeting went ahead on July the 6th. I was excited to meet others who had alopecia and scared too as I didn’t know what to expect. I was so nervous I actually took my friend Suzanne with me. We walked into the first meeting and I though god we have the wrong place. All these women have hair; none of them seemed to have anything wrong with them. However we were greeted by everyone and offered tea, coffee, cakes etc. It was really strange. I looked at my friend as I was not wearing anything on my head I was in my Gail Porter look. She could tell I was thinking what on earth is going on here? Anyway the meeting got under way and we started introducing ourselves to each other. Everyone there had alopecia and it finally dawned on me they are all wearing wigs! I couldn’t believe it, it was amazing. They looked so natural and a far cry from the horrible wig I had bought 6 months back. I was fascinated. We all started to share things with each other and I felt at last these girls no exactly what it is like having this disorder. It’s not an illness I thought. Some of these girls have lived with alopecia for 40 years. They had made it a part of who they were and part of there everyday routine. Like I used to get up and wash my hair, they get up and put there hair on. I was honestly gob smacked and fascinated at all the advice, help and support these people were willing to give me. I was given a lot of advice about wigs where to go, what to look for and more importantly I didn’t feel alone any more. I did belong somewhere now and I didn’t feel I was stuck out in the wilderness anymore.


Once the meeting ended I was on a huge high, at last people who understood what I was going through as they have gone through it too. There were young girls there aged 4, 10, 12 14 etc and ages of adults too. I was looking forward to the next meeting as soon as I left the first meeting.


Over the next few months I was able to get a wig which was very comfortable and I was even involved with a calendar shoot for a new charity (BE BOLD) which was forming on the back of the support group. It was brilliant, all my new friends from the group were involved to and it was a real sense of achievement. The calendars went on sale and things were looking good.


I was asked to be a trustee of the new charity and that was a major achievement for me to be asked to help others like me.


However I was still suffering terribly with the depression. Christmas was coming around and this would mark my first year of living with alopecia. I still didn’t feel right. My excellent new wig was not working for me. I hated wearing it or was it I resented it? I wasn’t sure to be honest, I felt pressured into wearing it. It was as though it was unacceptable not to wear it and this I think looking back was the problem.


Over the Christmas and New Year I really tried to enjoy myself but I couldn’t get over the fact my hair had not grown back as deep, deep down I thought I would have. I think that 1% of hope was dying and so was I inside again.


Months 12 to present:


January passed and our next group meeting was held. I was feeling quite low at this point I just wanted to get passed the depression I was suffering. Being at our next meeting helped me greatly. An amazing woman turned up to our group, Michelle Chapman. The work she has done for women with hair loss and her confidence really inspired me. She chatted none stop to everyone in the group and really made me think. The next phase in my alopecia life was kick started. Also being involved in the Be Bold charity too and doing things for others like myself was also having a big impact on me. After speaking with Michelle, emails and text I was able to loose that 1% of hope I was desperately clinging to.


I started seeing myself as this new person and each day I was able to concentrate on the positive things. I’ve always been able to joke about my hair loss but now I was actually enjoying the jokes and having a laugh with my friends. I started to go out again with my wig which was now called “Olive”. I still hated wearing it but at least I was confident enough to go out.


The charity was growing and we were starting I think to make a difference. We have lots of ideas to help others and we have the right people behind us to achieve our goal. We had our first big fundraising event which went really well, we have planned our next event too. We are starting to raise money which will allow us to raise awareness and help others who have alopecia. We have made new friends with other Alopecia groups through out the UK and we are starting to network really well together.


I wake up every day now and never give my alopecia a thought I see me when I look in the mirror. I feel I have grown in confidence and I am much stronger in who I am now. I can talk open and honesty now about what I have gone through and I don’t get upset anymore. I feel I can give others a lot of hope and help and being part of the BE BOLD charity I can do this.


Life is fine and dandy for me. I want to thank everyone who has helped me through the last 18 month especially Darren and Ann-Marie who without setting up the support network and Be Bold I would be lost still.