Okay, so where were we? Oh yeah.
So by this point it’s coming up to the end of November, and my hair is still falling out and growing back thick and fast. Some of my head is bald, some of it is all tufty and the rest is still long and red.
So I go and see my amazing hair dresser Ria to see if she can do anything to hide my patches a bit better. She cuts the length off from past my shoulder to a chin-skimming bob and then shaves off one side so I look a bit like Skrillex. Although that does a pretty great job at hiding my patches, when I looked in the mirror and I just didn’t see me. I’d lost so much hair that it was all so thin and limp. But Ria assured me that if it got much worse I could come back and she would shave it all off.
Meanwhile, my wonderful Doctor, Doctor John has referred me to the dermatologist to see if they can help with the hair loss.
So the Skrillex hair cut lasts for little under a week before I lose a massive clump of hair right in the middle of my parting, I go back to Ria and she shaves it all off, the best thing about having my hair shaved right down to a number 1 is it got rid of all of my half growing back patches and made it look way less patchy, and I could almost imagine that my hair was like that because I chose it to be, not because this stupid disease was ruining my hair, my happiness and my self esteem.
Around the beginning of December some of my friends and I got tickets to see Snoop Dogg (or rather, DJ Snoopadelic) at this club in town called Shoosh. Not actually being 18 at the time, I borrowed my friend Emmy’s ID. The thing was, I couldn’t really wear a big itchy, hot wig in the club, it was going to be rammed. So, I went bald. This was one of the only times I had been out in public without anything covering my head. This was partly because my head got so cold, and partly because I was insecure. I almost always covered my head with a beanie, wig or headscarf.
Exposing my head in a public place was a big step for me, and although all my friends, family and Dylan were incredibly supportive, I cannot say the same for the British public.
For one thing, that night at Snoop Dogg, I went to the loo and came out to wash my hands (avoiding my appearance, for obvious reasons) when girls behind me who were re-doing hair and touching up their make up decided to openly bitch about me. There was barely a meter between us. What shocked me most was not the horrible things they said (saying I looked too masculine to be in the female toilets, that I looked like a bouncer etc etc) but that there was quite clearly something wrong with me but decided to make me feel even lower than I already felt.
On another occasion when I had taken of my beanie for a quick scratch, a man walking past me stopped, physically recoiled before proclaiming “eugh, I thought you were some faggot transvestite’.
Incidents like these, accompanied by odd looks in the streets and whispers as I passed in college and in the street made me feel totally isolated and alone. It was coming up to Christmas by this point, but my Christmas cheer was evaporating. I had begun to research alopecia online and although I had found forums etc, I didn’t feel connected to these people…so I turned to YouTube, and to this day I consider that one of the best decisions I have ever made. It was because in doing so I found Charlotte’s YouTube channel.
Charlotte was, and still is, my best friend. She had developed brain cancer when we were sixteen, and had decided to do something about it, so dedicated a YouTube channel to her cancer experience. Charlotte and I had gone to the same secondary school but never crossed paths, but when I watched her Youtube video on ways to deal with hair loss I felt more connected to her than most people I knew. Despite having never talked to her before I messaged her and we immediately clicked, which subdued my total isolation.
A slightly less cheery element to christmas, was losing my eyebrows on Christmas Eve. This happened when I was wrapping presents for my family and raised my hand to rub my face, and when I did I felt a weird furry sensation, that was half of my eyebrow coming off. The other half followed on Christmas Morning and it wasn’t long after boxing day that the right eyebrow followed suite.
The thing is, you forget that eyelashes and eyebrows serve a function. When I proceeded to lose my eyelashes in February 2015, I could not believe how much of a difference it made. My eyes were constantly swollen and streaming, and dust, incense, moisturiser and everything else permanently irritated and aggravated my eyeballs. I had taken to drawing on my eyebrows with a pencil (luckily I’ve always had very thin eyebrows so it wasn’t too obvious) and wearing fake eyelashes on my top lid and drawing on lashes on my bottom. My amazing friend Meg bought me a whole selection of good quality, natural looking eyelashes and a brow stencil which saved my life. But unfortunately my false lashes, brows and penciled eyelashes had an awful habit of sliding down my face.
So there I was, no hair, no eyebrows, no eyelashes… no self esteem. Realising that sooner or later I would have to come to terms with the fact that this might be my life from here on in; having my hair shaved down every week to feel better about my condition, being stared at my strangers in the street/ school corridors/ work because of my bare face, beanie or wigs, and spending almost two hours on my make up everyday so I would resemble something close to normal. I was beginning to think there was no solution, but eventually there was. But I’ll get onto that next time.