Chapter 1 – Early days 

Like most I remember my first brush with alopecia very clearly. I was sitting on my bed brushing my hair, my mum came in, sat next me and we chatted. She put her finger to my head and rubbed a small bald spot just above my right ear. I had thick, long and fairly course hair so I wasn’t too worried at this point, assuming I had brushed too hard and pulled some out. This was just a few weeks before my 22nd birthday in March of 2014. Over the next few days my head began to itch, so much so that at times I thought it was going to explode. I kept thinking about that scene in Friends where Phoebe gets her hands taped into oven gloves to stop her scratching her chicken pox. That seemed like the only rational thing to do to stop the maddening itch. Around the same time I noticed some extra hair fall in my brush and in the shower. My mum bought me every pill, shampoo and lotion that could be found to try and stop the itch or ‘grow your hair’. Thinking again this was all that was needed I continued to just think of this as a minor inconvenience that would soon go away. Little did I know that really this was the start of a whole new life for me.

Within the next week my hair loss continued at quite a rapid rate, more patches appeared and I realised I needed to see my doctor. Let’s just say my first GP experience was less than ideal… my doctor was an older man who took a magnifying glass to my head, picked up a book from the shelf had a flick through and said ‘Yep, you’ve got trichotillomania’. I was gobsmacked. Did he really think I was pulling out my hair? I was so confused; I knew this wasn’t the case, but he was pretty sure. ‘It could also be alopecia but I can see some bits growing back so I highly doubt it’. I left with more questions than answers; What was alopecia? If it was that, did that mean my hair would be gone forever? What can be done about it? I left dejected, upset, scared and, honestly, a bit angry.

Skip forward a few days and I wanted a second opinion, this time I booked in to see a female doctor, hoping for a little more of empathy. This time I felt a lot better, she explained what alopecia areata was, apologised for my previous experience and reassured me that my hair wouldn’t all fall out. Phew! So off I went on my merry way. Well, let’s just say she couldn’t have been more wrong….

Chapter 2 – The dreaded dreadlock

Honestly, the days and weeks the followed are all a little bit of a blur. I often say it felt like I was floating above my own body watching someone else experience it, I just felt numb. My hair loss continued at a rapid rate, I could pull clumps of it out at a time and washing my hair became a great source of anxiety for me. It took a toll on my relationships too. I could feel how heartbroken my parents felt, knowing they couldn’t do anything to help. I became reclusive and didn’t want to see my friends because it felt too hard to talk about, especially as I didn’t know why it was happening!

One of the things I remember more vividly than anything else is the day my mum had to help me to remove the remaining hair. Once the majority of hair was falling out I decide to tie my hair into a French plait. It hid a lot of the patches, made it look neater and I felt maybe it wouldn’t be so distressing as the hair couldn’t fall out and show up all over my clothes. Unfortunately, this quickly led to a matted, huge dreadlock of hair on the back of my head. I refused to wash it, brush it or even touch it. I was just in denial. My mum told me it was time to take a look at it. She led me to the bathroom and with equally teary eyes she began to slowly untangle my hair. We must of sat there for hours whilst she teased the hair, gently brushed the knots and tried her best to keep me calm. By the end she lifted away what was about 60% of my hair, leaving me with small, straggly lengths of hair sadly reminiscent of Gollum from Lord of the Rings. I think devastation is too small a word for how I felt. I wanted the world to swallow me up. I wanted to never leave my bed again. I wanted to go back in time and find the answer for how to stop this.

Those who know me know I live a very ‘stiff upper lip’ kind of life, I’m usually quite good at dealing with my emotions and putting things in perspective, seeing the positives and generally being a perky person. But alopecia had taken that from me. I felt worthless, useless, hideous. There were no positives to this. I’ll be honest, even now, years down the line, I still have my days when I feel this way. But luckily these are less and less frequent. But I digress…

Chapter 3 – The U S OF A

By May of 2014 I had lost all of my hair on my head and now had Alopecia Totalis. I’ll be honest, I took very few photos around this time. Any I did take I have since deleted as I just found them too hard to look at. With hindsight I was I had kept them to reflect on (and to break up this text bit!)

Six months earlier I had signed up to be a Camp Counsellor through Camp America. It was an experience I was really looking forward to. Unfortunately, my hair loss happened mere weeks before my flight. I ummed and ahhed as to whether I should still go and, with the help and support of my friends and family, I came to the decision that it was too good of an opportunity to miss. I found a wig that I liked and told my employees what was happening so that I knew I could talk about it if I needed to. I could write for days about my experiences there but I’m going to try keep it short. On the whole it was enjoyable; the job was great, people friendly, kids really cute, experiences memorable, BUT...And that was the thing! Over every great moment loomed this horrible feeling I couldn’t shake. I just wasn’t myself. I was self-conscious and quiet; my wig was super short (not like my bio hair) so every time I looked in the mirror it didn’t feel like me. What made this worse was whilst I was there, I also lost the rest of my body hair, I woke up one morning and practically just wiped away one eyebrow. I felt I had no options but to carry on but I felt broken and didn’t really talk to anyone about how I was feeling.

Before any hair loss when i got my Camp America place (Me on the far left) During my Camp experience with a wig that didn't feel like me! After Camp visiting a friend in Canada. Picked up a cheap wig and was drawing on some very uneven eyebrows! 

I look back now and wonder whether going to America for those three months was good for me or not. On one hand it forced me to get out of the house, it gave me a fairly decent distraction and stopped me from curling up into a ball and allowing what was happening to consume me. On the other hand I think it convinced me that pushing my emotions and feelings down and bottling up was the way to handle this. So that’s what I continued to do.

Chapter 4 – Dealing with it

For the next few years I carried on with life as best I knew how. I got a wig that looked more like my old hair, I got a new job and barely told any of my colleagues about my alopecia. I met new friends and rarely talked about it. My wig only came off in front of family and close friends. I just put it into a box and put it to one side and tried not to think about it. This really only started to change when I woke up one morning and noticed I had some white fluffy bits of regrowth on my head. I couldn’t believe it, it was coming back! This was it! See ya later alopecia!!

It took a loooong time but more and more hair started to grow. Patchy and white at first but then the colour returned and it started to get thicker. This was a catalyst for me. I realised that I had put so much importance on this hair. I had actively stopped myself from doing things. I no longer went swimming or on rollercoasters or on dates. I passed up opportunity upon opportunity and I just couldn’t allow my alopecia to have that much power anymore. I decided that regardless of whether this regrowth continued or not I would aim to be more open and not let alopecia stop me.

It sounds too simple but honestly from that point on my life has changed for the better. I am now a lot more open about my alopecia with friends, family, strangers – anyone who will listen! I went travelling for 10 months where I ditched the wig and just let my hair do its thing (sometimes for better or worse 😉) I opened myself up to dating – something that was a huge barrier for me, and on the most part had some fantastic experiences! I lived and I was truly happy.

Travelling without my wig felt like a bit step! Fortunately i had lots of nice distractions!  At one point i even had enough to go purple! (I look miserable but i swear i was happy!)

Then came Alopecia UK. Strangely throughout all of this I had never reached out to the charity for help, I knew they were there but something always stopped me – most likely my pride, believing I ‘didn’t need help’. One day they put out a job advert and coincidentally I was looking for a new job path at the time so thought this could be a great opportunity. I was very lucky to get the job and not only has it been an amazing new career for me, it’s also helped me to really accept my alopecia and see the power of peer support.

Chapter 5 – Where am I now?

Well, that is a good question. Since the start of the regrowth that I mentioned earlier I’ve gone from patchy hair – full head of hair – patchy hair (choosing to shave it off) – some regrowth – full head of hair. Which is roughly where I am now, minus a few small patches hiding in amongst the curls. Sometimes I wear wigs, sometimes I don't - I tend to see how the mood takes me! I still live in hope that it will all grow back and stay put, but I also live with the reality of it never quite being the same again. After the first full regrowth and those patches appearing again, I was obviously devastated. So I take each day as it comes. Experiencing alopecia really is a rollercoaster and the best way to get through the highs and the lows is with a community of people around you to help you through it. I’m just so glad I found them 😊