When I was 11 years old, I had medium-length, shiny brown hair.
Then it started falling out.
I was sitting on my bed, alone, when I ran my fingers through my hair - and I noticed a smooth, round bald patch. It was about the size of a 10p coin. Suddenly, I started feeling a bit sick, like I'd been punched in the stomach. I had no idea what was happening, but I was terrified.
My parents took me to the doctor, who explained that I had something called 'alopecia areata'. They told me that it causes you to lose your hair, but that it wasn't anything to worry about. It's not contagious, and you can't die from it. There were lots of ways I could cover my head, they said, including wearing wigs. It was all really daunting.
According to the British Association of Dermatologists, around one in 50 people will experience some form of alopecia in their lives. But it's still a mystery to experts - it’s not known exactly what causes it, or exactly how many people have it in the UK. It's thought to be hereditary in about 20% of cases.
At that point I was only losing patches of hair - not everything. But I didn’t realise at the time that I would eventually develop alopecia universalis – a form of the disorder that would cause me to lose all of the hair on my head, face, and body. Even my eyebrows.
As a child, my bald patches made me feel so self-conscious that I didn’t want to go to school. I would cry in the mornings and beg my mum to just call in and tell them I was ill. Whenever I did go in I'd make sure I covered my head with a hat - but it didn't help. Boys in the year above me would bully me for it. I tried to cover my head, and preserve at least some of my dignity, but they would just snatch my hat and run away. When that happened, I was so hurt and ashamed that I'd hide in the bushes to cry.
At night, I'd lie in bed for hours crying and eventually I had to be prescribed sedatives. A couple of years later, when I was still just 13, I was prescribed anti-depressants.
I missed almost two years of secondary school, and didn’t do any of the usual teenage girl things like going out with friends regularly or, well, doing any school work at all. The kids in my year group were lovely, though - when I was off sick, they would all pitch in to send cards and flowers to me. That's something I always remember.
I even missed some of my GCSEs. To be honest, I just didn’t see the point in any of it. As soon as I turned 16, I began training to become a hairdresser - a job I did for a few years, despite having patchy hair myself - before becoming a receptionist for a law firm. I never went to work without my wig on.
My hair continued to come out in clumps until I was 21. I'd met someone, and I had my my first child - a baby boy. To my relief, most of my hair started to grow back after I gave birth and I didn’t seem to have any problems with it. Usually women are warned that their hair becomes thinner after birth, but the opposite happened with me - I'm not sure why. But I hoped that, after losing my childhood to hair loss, that chapter was finally behind me for good.
After my son was born I started working at the local hospital as a clerical officer. The following year, when I was 22, my boyfriend and I got married.
Even when my hair and work seemed OK, other parts of my life became increasingly bleak. My marriage wasn't going very well - in fact, it seemed to crumble a little bit more every day. The insecurities I had developed as a child never really left me. Even through all of this I managed to become pregnant again - this time, I had a little baby girl. But having two beautiful children didn't improve things in my marriage and eventually, when I was 27, my husband and I split up.
For the next seven years or so I focused on bringing up my son and daughter who, at six and two, were still very young. I didn't date, but I had a group of close friends, a good job, and somewhere nice to live. We were a happy little family together.
But when I was 34, my scalp started to itch.
At first I was scared that I had head lice, and tried special shampoo. But one day, when I reached up to scratch, I pulled away huge clumps of my hair. I went to the doctor, and they told me that I had developed alopecia universalis - and that I would soon be completely bald.
At first I tried to wear hair extensions to cover the bald patches, but eventually so much hair fell out that I cut my remaining hair short and started wearing headbands, hats and, sometimes, wigs – anything to hide the intense shame I felt about being bald. But, most of all, I went into myself completely. I didn’t want anyone to see me. I wanted to just disappear.
Seeing myself without any hair at all just floored me. It was awful – I’d had patches of hair loss before, but I’d never seen myself completely bald.
Although I was now in my 30s, I immediately reverted back to being that frightened 11 year old girl who couldn’t face leaving the house. The fear, pain, and insecurity came flooding back and hit me like a speeding train.
I had hoped to start dating again after splitting up with my ex, but losing my hair made me feel so unattractive that I just couldn’t see how anyone would ever want to be with someone as hideous as me. I couldn’t even look in the mirror, and even when I was walking around the house I’d make sure I had my head covered in a hoodie or something – just in case someone happened to see me or I accidentally caught my own reflection. If someone knocked on the door, it sent me into a blind panic, and every mealtime I drastically restricted how many calories I ate.
But I knew that was no way to live, and eventually I sought help from a support group run by the biggest alopecia charity in the UK.
Meeting other people going through the same thing that I was made me realise that, despite how I felt, I wasn’t alone.
The first thing I needed to do was learn to love myself. I had never thought particularly highly of myself before – I’d always struggled with my weight in particular. So I figured that the best way to build my confidence was to spend five minutes every day telling myself, in the mirror, that I was beautiful.
This was easier said than done – especially since, until that point, I couldn’t even face looking at my own reflection.
But I did it. At first I would tell myself, 'Oh, you’re not too bad today, you’re OK actually'. Then I worked up gradually to looking at myself in the eyes and telling myself, matter-of-factly, 'You are beautiful'. After a few months of repeating this mantra every single day, sure enough, I didn’t actually have to tell myself anymore – I actually, finally believed it.
It wasn't always easy, though. There were times when I thought, 'If only someone could give me £20,000 out of nowhere, I could spend it on plastic surgery to change myself'. But I had to make an active effort to talk myself out of thinking things like that.
And there was another barrier I had to break - dating. After doing the mirror exercise for a while, I decided to join a dating website. It was really quite scary, honestly. I had no idea what all of these strange men, who knew nothing about me, would think of my alopecia. But, at the same time, I felt that I needed to be open and honest about my condition. I was upfront, and said in my profile that I was bald.
My baldness did put some men off. They would message, and then lose interest once they realised that I had no hair. It was as if it was something they just couldn't see past - and I get it, in a way. There's so much focus on hair as a sign of beauty that you can't entirely blame them. Fortunately though - and to my pleasant surprise - these men seemed to be in the minority. I got a lot of messages from men interested in me regardless of my alopecia, and as time went on it gave me a real ego boost to chat to people who didn't see my condition as a big deal.
In the end, though, I was asked out by a man I already knew. We'd known each other before I lost all my hair, and, after I went bald, I was too scared to meet up with him again. However, he eventually messaged me and asked if I'd still be up for reconnecting with him - and I decided to go for it.
Despite all my new-found confidence, meeting him again for the first time was really nerve-racking. But he doesn't see me as 'Carly with no hair' - to him, I was just 'Carly'. Although we're just friends now, that helped me to see myself as just 'Carly' too.
Once I learned to love myself, I wanted to help other people love themselves too. So I started selling wigs, mostly to people with alopecia. Still, I realised that was only really a quick fix, and half the time I’d find myself telling my clients that they were already beautiful without their hair.
A lot of them would tell me to go into life coaching or counselling, because they would feel totally different about themselves after meeting with me.
So now I'm focusing on running a body image consultancy. I realised that if you don’t feel that confidence inside, then even the most expensive wig in the world becomes totally worthless. I personally do still wear wigs sometimes, but it’s more like an accessory to me now – it’s no different to a scarf or a pair of earrings.
That's what I try and tell the people I help - like Anna, an 18-year-old woman who was so conscious of her hair loss she gave up playing sports.
Sometimes I do stop and reflect on how far I’ve come. I didn’t choose for all of my hair to fall out, but I did choose to deal with it the way I did. But I’ll never let alopecia beat me again. I didn’t realise I had this much strength within me until I really needed it, but since finding it I’ve grown so much.
If you gave me the option of having my hair grow back, I wouldn’t even hesitate – the answer would be no. Losing my hair has been a huge hidden gift for me. It has given me the amazing life I know I always deserved.
As told to Ashitha Nagesh
This article was originally published on 3 September 2018.