So here's something I don't talk about much.
Okay. I actually want this to be, if not long, at the very least not short. Which is surprisingly difficult for me, and one of the reasons I always thought I'd never write professionally - I don't mince my words. Some people bang out five times as many words as me to say the same thing. Not that I consider being succinct a bad thing, but it can make achieving word counts difficult in essays, for example. Anyway. I know it's been a long time since I updated LJ, and that not very many people read this anymore. What can I say, it's a busy life and clearly I don't feel the need to vent as much as I used to.
Having alopecia has always been a large part of my identity. Of course it is; how could it not be? Disguising it has been my life's work and there are many paths I have considered. When I was younger (with more opportunity to do so) I thought about going into medical research to try and find a universal cure. I decided I wasn't suited to it, and as far as I'm concerned that was the right decision, then and now. My first encounter with alopecia was at seven years old. I have never known specifically why it happened, or why my hair came back for two years. It happened, and I told everyone. That has possibly been one of the more difficult parts of my journey. I am inclined towards an open trusting nature, and this has become my closely-guarded secret. Those who read this may not think it so, but do I face the world? No. In part I know this is due to how my schoolmates reacted. I think I was fortunate enough at that time; either not much mention was made of it, or it has all faded from memory. In that year, there were only two hard times for me - once I got hit on the head with a netball and my wig became off-centre, and the other I was doing forward rolls on the field and I think it came off entirely. But not much was made of it, everyone told me how brave I was and that was that.
So as far as I was concerned, there was nothing to worry about. Back then, it was a one-off incident. It was not until my sister found her own bald patch that I became once again worried about my own head of hair. I don't remember an awful lot, to be honest. I know that slowly, patches came and multiplied and grew and joined, and my head became a shifting pattern of hair and not-hair. I know that my mother tried her very best to cover every patch with the hair I had left, which was fortunately both thick and longish. I remember having plaits, and I remember worrying about the wind revealing the patches. I don't particularly recall the decision to wear a wig again, and I don't know how much it was my decision, but I was only thirteen, so of course my parents took the lead. I told a few classmates, and went to Hove for a trying-on session. That was fun, and it remains the best part of choosing a wig. I came back with two - one inspired a classmate to tell me I looked like a Beatle, so I switched to the other.
It was during that time, my schooldays when I wore a wig, that I learned not to trust people. One time someone tried to pull it off, while we were standing in line for PE. I don't know if he was just curious, I don't even remember who it was. I was, rightly enough, angry, and my friends were shocked. I almost went home, but he was bulldozed into apologising. Another time I was mock-fighting in my tutor room and someone did take it off my head completely. Maybe they had a morbid fascination with what was happening to my head - all I wanted to do was disguise it, and I suppose that put a certain mystery into it. Some girls in my sister's year took it upon themselves to bring it up whenever they were in my presence, and group of boys shouted wig at me during a breaktime. Another person took a swipe at my head in an empty corridor and took it off. I put it back on and walked away. I'm sure a lot of people thought I had cancer, because very few people associate being bald (especially as a female) with being totally random.
So yes, in that time, I began to distrust people, and since then it has only ever been my friends that have known. This is very definitely at least one of the things preventing my bald escape into the world. Of course, it's also pretty impractical - I don't know about other bald people, but my ears get cold! Even around the house I tend to wear a hoody or a scarf on my head just for warmth. I don't want to be looked at as different, because I'm not. I don't know if I'll ever get used to the idea that if I do go bald, people will stare. Or perhaps children would openly stare, and everyone else would do the polite thing by stealing glances and pretending not to look. Even if people didn't stare, I know being bald is as weird as if I had a third arm, and I don't know if I could handle that.
Amazingly, the response I hear from people an awful lot is "if I went bald, I would just wear funky wigs all the time". This response seriously makes me want to just grab them and SHAKE them. NO. For one thing, nice wigs are really expensive, so if you want to wear funky wigs, be prepared for them to deteriorate quickly. For another thing, as a woman, your hair is often your crowning glory. I've actually started feeling lucky I lost mine to an almost full point at thirteen, because it meant I never integrated nice hair into my identity. The time I changed the most, I feel, was at sixteen. I had a phase of regrowth, a large enough phase that I could do hair and no wig. It was shortlived, however, as I discovered the most tiny patch - barely a fingertip, but I knew, and sure enough I was right. That was probably when I realised my hair not only might not come back, but probably wouldn't. Having never really had hair through my teenage years and probably continuing through my entire life without it, it's not a problem for me anymore. I wear a wig, and I hide it and I worry. The thing is, when you go bald, you just don't want people to know. Often people think they are less attractive - I know sometimes, even after all this time, I look in the mirror and go "wait, what?" Losing your hair is emotionally devastating, far more so than people realise.
All that said, I feel now that maybe I've earned the right to go ahead and get the funky wigs. Totally unbelievable and unbelievably cool. I've done my time. I can still be normal, but I can have my fun. I can go out in a purple wig. I have yet to do this, but I am actually quite looking forward to it. Still. I will worry about people staring and what people think. At the moment I feel one of the strangest things about my face is the lack of eyebrows, but soon it will be the lack of eyelashes. Eyebrows do actually add a lot of expression to a face, and they're a kind of finishing line - "my face starts here, look down into my eyes". Without them, I go from eyes to an expanse of forehead.
My journey through alopecia has been chronicled here. I know I had a period of monthly patch updates, and actually I have relatively slow-progressing alopecia. It took months for my patches to overtake my head. I do not ever expect the status to change now, and I only hope that I lose all bodily hair. I notice the gap in my left eyelashes although nobody else will unless looking, but it worries me. My wig worries me. My drawn-on eyebrows worry me. But I continue. I persevere, and most of the time I ignore it. I allow myself the odd thought of wishing I had hair, but in the end it makes no difference. I know I am bald, and I accept it.
Having alopecia has always been a large part of my identity. Of course it is; how could it not be? Disguising it has been my life's work and there are many paths I have considered. When I was younger (with more opportunity to do so) I thought about going into medical research to try and find a universal cure. I decided I wasn't suited to it, and as far as I'm concerned that was the right decision, then and now. My first encounter with alopecia was at seven years old. I have never known specifically why it happened, or why my hair came back for two years. It happened, and I told everyone. That has possibly been one of the more difficult parts of my journey. I am inclined towards an open trusting nature, and this has become my closely-guarded secret. Those who read this may not think it so, but do I face the world? No. In part I know this is due to how my schoolmates reacted. I think I was fortunate enough at that time; either not much mention was made of it, or it has all faded from memory. In that year, there were only two hard times for me - once I got hit on the head with a netball and my wig became off-centre, and the other I was doing forward rolls on the field and I think it came off entirely. But not much was made of it, everyone told me how brave I was and that was that.
So as far as I was concerned, there was nothing to worry about. Back then, it was a one-off incident. It was not until my sister found her own bald patch that I became once again worried about my own head of hair. I don't remember an awful lot, to be honest. I know that slowly, patches came and multiplied and grew and joined, and my head became a shifting pattern of hair and not-hair. I know that my mother tried her very best to cover every patch with the hair I had left, which was fortunately both thick and longish. I remember having plaits, and I remember worrying about the wind revealing the patches. I don't particularly recall the decision to wear a wig again, and I don't know how much it was my decision, but I was only thirteen, so of course my parents took the lead. I told a few classmates, and went to Hove for a trying-on session. That was fun, and it remains the best part of choosing a wig. I came back with two - one inspired a classmate to tell me I looked like a Beatle, so I switched to the other.
It was during that time, my schooldays when I wore a wig, that I learned not to trust people. One time someone tried to pull it off, while we were standing in line for PE. I don't know if he was just curious, I don't even remember who it was. I was, rightly enough, angry, and my friends were shocked. I almost went home, but he was bulldozed into apologising. Another time I was mock-fighting in my tutor room and someone did take it off my head completely. Maybe they had a morbid fascination with what was happening to my head - all I wanted to do was disguise it, and I suppose that put a certain mystery into it. Some girls in my sister's year took it upon themselves to bring it up whenever they were in my presence, and group of boys shouted wig at me during a breaktime. Another person took a swipe at my head in an empty corridor and took it off. I put it back on and walked away. I'm sure a lot of people thought I had cancer, because very few people associate being bald (especially as a female) with being totally random.
So yes, in that time, I began to distrust people, and since then it has only ever been my friends that have known. This is very definitely at least one of the things preventing my bald escape into the world. Of course, it's also pretty impractical - I don't know about other bald people, but my ears get cold! Even around the house I tend to wear a hoody or a scarf on my head just for warmth. I don't want to be looked at as different, because I'm not. I don't know if I'll ever get used to the idea that if I do go bald, people will stare. Or perhaps children would openly stare, and everyone else would do the polite thing by stealing glances and pretending not to look. Even if people didn't stare, I know being bald is as weird as if I had a third arm, and I don't know if I could handle that.
Amazingly, the response I hear from people an awful lot is "if I went bald, I would just wear funky wigs all the time". This response seriously makes me want to just grab them and SHAKE them. NO. For one thing, nice wigs are really expensive, so if you want to wear funky wigs, be prepared for them to deteriorate quickly. For another thing, as a woman, your hair is often your crowning glory. I've actually started feeling lucky I lost mine to an almost full point at thirteen, because it meant I never integrated nice hair into my identity. The time I changed the most, I feel, was at sixteen. I had a phase of regrowth, a large enough phase that I could do hair and no wig. It was shortlived, however, as I discovered the most tiny patch - barely a fingertip, but I knew, and sure enough I was right. That was probably when I realised my hair not only might not come back, but probably wouldn't. Having never really had hair through my teenage years and probably continuing through my entire life without it, it's not a problem for me anymore. I wear a wig, and I hide it and I worry. The thing is, when you go bald, you just don't want people to know. Often people think they are less attractive - I know sometimes, even after all this time, I look in the mirror and go "wait, what?" Losing your hair is emotionally devastating, far more so than people realise.
All that said, I feel now that maybe I've earned the right to go ahead and get the funky wigs. Totally unbelievable and unbelievably cool. I've done my time. I can still be normal, but I can have my fun. I can go out in a purple wig. I have yet to do this, but I am actually quite looking forward to it. Still. I will worry about people staring and what people think. At the moment I feel one of the strangest things about my face is the lack of eyebrows, but soon it will be the lack of eyelashes. Eyebrows do actually add a lot of expression to a face, and they're a kind of finishing line - "my face starts here, look down into my eyes". Without them, I go from eyes to an expanse of forehead.
My journey through alopecia has been chronicled here. I know I had a period of monthly patch updates, and actually I have relatively slow-progressing alopecia. It took months for my patches to overtake my head. I do not ever expect the status to change now, and I only hope that I lose all bodily hair. I notice the gap in my left eyelashes although nobody else will unless looking, but it worries me. My wig worries me. My drawn-on eyebrows worry me. But I continue. I persevere, and most of the time I ignore it. I allow myself the odd thought of wishing I had hair, but in the end it makes no difference. I know I am bald, and I accept it.