I can remember the day in February that I felt like my whole world collapsed around me. I was sitting chatting away with my hairdresser when she very discreetly showed me something. At first, I was expecting her to tell me I had nits, I have young children and this wouldn’t shock me in the slightest, instead, she showed me some large patches of missing hair. I wish she had said it was nits. I was mortified, devastated and just wanted to hideaway.
I made a Dr appointment immediately, after over a week of worrying it was confirmed I had alopecia. I can remember crying. I can remember thinking what next. I was scared and felt so alone. I googled everything and probably scared myself in the process. Google wasn’t very helpful with the only certainty that there was no known cure, and that the trigger could be anything from stress, diet or even just one of those things. Not knowing what caused this made it worse for my logical mind because if I didn’t know how it had happened then how could I stop it from happening.
I began doing what anyone usually does in these situations, seeking a cure. Seek a way to fix this but there is no cure and there is no miracle drug and what’s worse is there are people out there making money offering such things. I started cutting things out of my diet such as sugar, wheat and dairy to name a few but nothing made a difference. I started not wanting to wash or brush my hair. Seeing my hair fall out in the shower, I would stand there crying. Looking at the hair all over the bed and on the floor would break me every single time. My mental health was suffering. I wasn’t enjoying the things I normally would, just in case someone would see and say something. I began avoiding social situations and stressing over little things.
I found myself getting upset over silly things, like people donating hair to make wigs for cancer patients who had lost hair. I found myself screaming at my computer, well what about those children with alopecia.
Hair is such a big part of our identity. Regardless of age or gender, we let our hair define who we are. When you are faced with hair loss you feel like you lose your identity and your confidence takes a nosedive. You feel alone, you feel too scared to say something for fear of being mocked and in certain circumstances, you feel a fraud because of how varied Alopecia is. Alopecia has so many forms some people lose patches and some lose everything and so when I sat there crying about the large patches of hair missing on my head, worrying if tomorrow I would have eyebrows or eyelashes it dawned on me that I have no control over this and I can either let it define me or simply just be a part of me.
Accepting it was just a part of me was actually a huge turning point. I like wearing hats, so I wore more hats. I bought all sorts of different ones. I stopped looking when I was washing my hair so I couldn’t see the large quantities falling out any more. My children were an actual part of what saved my mental health because to them I am Mummy. They don’t care if I have hair or not, they care if I am there for them.
What anyone with alopecia wants is for it to be accepted as normal. To not feel judged. As an adult, I found this the hardest part and had to tell myself that I wasn’t scared of the thing I wanted to do I was actually scared of people's reactions. Once you overcome not caring about what others think, you begin to feel free again.
For younger children with alopecia, I think it is important to try and not make it a big deal, so again the alopecia does not define them. Try not to investigate, have hundreds of hair appointments and instead let it be. As hard as it is, there is no cure and the more we prod and poke the more we are aware of the hair loss which brings back self-consciousness.
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Whilst those who have never experienced hair loss cannot begin to understand the emotional impact it takes not only on the person suffering but also the immediate family, it is important to accept Alopecia as normal. Those with hair loss have absolutely no control over it, they cannot stop it from happening and as each hair falls out they feel a part of their identity is lost with it.
If you are suffering from hair loss there are some fantastic and supportive online groups and I urge you to join. It was so reassuring for me to see I was not alone and to see how I was feeling was completely normal. At the moment I have full hair regrowth and I feel incredibly lucky at this. I still have no idea what caused me to lose my hair and probably never will. It may happen again or it may not. It doesn’t stop me worrying it will but if it does I have a great excuse to buy some more hats.
