My Alopecia Story

This is quite a personal post for me but I wanted to share my experience of having had alopecia, wearing a wig and everything else that comes with it.  I wanted to put my experience out there in case it ever helps anyone else or can be of use to someone going through something similar.

My Alopecia Story

Four months before my wedding day, my hair started to fall out.

It wasn’t dramatic and it didn’t happen overnight but slowly I started to notice strands of it coming out in the shower or being left on my hairbrush. I’ve always had ridiculously thick hair so I was easily able to cover the ever increasing bald spots that were appearing on my scalp and for a long time I just carried on as normal. My wedding day came and the amazing girl that did my hair just covered up the missing patches with hair extensions which worked really well.

When it first started happening, I went to the doctors who suggested it could be Alopecia Areata – an autoimmune condition which causes your immune system to mistakenly attack your healthy hair cells causing it to fall out. Unfortunately there isn’t a particular cause or a trigger and it can just happen randomly out of the blue, often for no reason. I was just told to monitor it and come back if it got any worse. It continued to fall out, so I went back to the doctors again and they did blood tests to see if there was anything else that could be causing it. Thankfully all the tests came back negative which was a relief and the doctor told me that apart from having alopecia, I was healthy and although my hair had decided to fall out, there was absolutely nothing else wrong with me. I was referred to a dermatologist who went through my options, however at the time I was in the early stages of pregnancy and couldn’t have the steroid cream that seemed to be the only option on offer. (My alopecia started quite a while before I got pregnant so the two were unrelated.) I found that the dermatologist didn’t really take what I was saying too seriously and brushed it off with ‘well i’m sure it will grow back’ which at the time wasn’t all that helpful.

I’d never had alopecia before and it isn’t something that any of my family have ever had before – so it was a bit of a shock and not something that I had any experience of.

Stress is the first thing that people suggest when they find out your hair is falling out. ‘It must be stress, are you stressed?’ When I look back I did have a lot going on at that time – my husband and I had bought our first house a few months earlier and were completely renovating it throughout, I’d started a new job a few months previously and I was planning a wedding. Looking back, yes all of that does sound a lot but at the time I felt absolutely fine and not particularly stressed at all. I’d also started going to the gym regularly about 4 times a week and eating very healthily – I can honestly say I was the healthiest/fittest I have ever been in my entire life which is quite ironic.

I was also in a very good place emotionally – it was like someone saying ‘well you can have all of these good things happen to you but I’m afraid you’ll have to do it all with no hair’ – which if I’m honest at the time felt like a fair deal.

I decided early on that I wasn’t going to let my hair affect me too much and carried on with everything as normal. The first months went by and as my hair was so thick it took a long time to be noticeable by anyone else. However after about six months, a lot of my hair had fallen out and what remained was very thin. People noticed. I began to feel more self-conscious but was determined that I wouldn’t let it get me down.

It was the random, everyday things that would make me particularly self-conscious – sitting on the bus, I’d be thinking ‘oh my goodness, the person sat behind me can see my hair!’ or standing in the queue for the cashpoint.

A lot of my confidence came from the people around me, my family and friends. My husband was absolutely amazing and helped me so much. He would get up early with me before work every single day and I’d sit in front of the mirror whilst he clipped the few strands of hair I had left into place. Although it didn’t hide anything at all, I just felt better afterwards and I am so thankful to him for all of his support.

I’d told a couple of close friends when it first started happening but as I mostly just carried on as normal I didn’t make too much a fuss about it. As alopecia can be such a visible thing I found other people’s reactions impacted on me in different ways. Some friends asked me directly if everything was ok, others asked my husband instead – some friends didn’t bring it up but continued to be there for me by just carrying on as normal – asking me how I was, arranging meetups etc. All of the above reactions were great and really helped me to just get on with things.

There was one instance of a friend I heard less and less of over the months until I eventually found out they’d assumed I was very ill and they didn’t want to get in touch. This was a bit of an eye-opener for me and really made me reflect on the great support that other people had given me. I know people don’t want to offend and it can be awkward to ask someone if everything is ok but I would much prefer someone asked me outright what was wrong than avoid me altogether or show no interest at all.

Wearing a wig

By October, most of my hair had fallen out and it was getting harder and harder to remain upbeat about it. I’d started to feel less confident and could see it had started to have more of an impact on my daily life. I decided I’d had enough and began to look into my options.  I didn’t really know what to do and the idea of wearing a wig seemed pretty scary to me – where do you even begin to start?!

I started to look online and came across Nicky Oliver’s hair salon that advertised a wig service and even had a private ‘wig room’ where you could try different ones on. I reluctantly booked in and my husband and I went along together one evening for the appointment. Nicky took us downstairs to the wig room and we had a chat about what had been happening – he was amazing and we were both instantly very at ease with him. (I will have to write another blog post about my experiences at the salon another time as he is brilliant and helped me so much.) Nicky knew exactly what he was talking about and I felt that I could trust him to help me. After a lot of deliberation, I chose a wig and he cut and shaped it there and then for me so that I would wear it out of the salon. (We actually went straight out for a meal afterwards and I felt so much more like myself again.)

Going out in public wearing a wig for the first time was nerve-wracking. Will it fall off? Can everyone tell? Those first few weeks I felt like I was wearing a neon sign above my head which shouted ‘she’s wearing a wig!!’ Walking down the street though, no-one looked, no-one batted an eye-lid – if they did realise I was wearing a wig – well so what, no-one was bothered. After a few weeks, wearing a wig felt like a natural thing to me and I just added it to my morning routine and left the house without fuss.

I’ve always been very open about having alopecia and wearing a wig, particularly if anyone has asked and never tried to hide the fact that actually no, this wasn’t my real hair. I felt that trying to hide it would bring more problems and make me feel more self-conscious so I was always more than happy to talk to people about it or answer questions if they arose.

A year on

It has now been a year and half since my hair first started falling out. Since wearing a wig, my real hair has been slowly and steadily growing back. A few months ago I had my very first real hair cut in over a year and half and walked out of the salon without my wig on. Going down the street with my real hair felt quite liberating and even though my hair was very short – I know how lucky I am that my hair has decided to grow back. Some people’s hair falls out and never grows back again, some people’s eyebrows etc fall out as well and I know that alopecia can be a very difficult and upsetting thing to deal with. I feel lucky that my alopecia coincided with a time when I was at my best which allowed me to deal with it well and in as positive a frame of mind as possible.

I don’t know if it will happen to me again in the future and hopefully it is a one off occurrence but I will always be mindful that I am lucky to be happy and healthy and so grateful for what I have.

For more information on alopecia and for help and support: http://www.alopeciaonline.org.uk

 

P.S – Since I originally started writing this post I have had a baby! Over the last few weeks I have noticed that some of my hair has started to fall out again – I know that ‘post-partum hair loss’ can be a thing though so we shall see what happens!

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Visiting Nicky Oliver at his salon and choosing a wig

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Getting used to wearing my new wig

 

1 Comment

  1. 29th May 2016 / 10:23 pm

    Fabulous post. This is very brave of you to speak about such a personal thing.

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