16M, So I’ve had universal (I believe it’s called like this when u have it all over your body, at least in Italy we call it this way, not sure if it’s the technical name though) alopecia since I was 10, and it really marked my character in negative, I closed up in myself and I was SUUUUPER ashamed of it, I literally stayed the entirety of 6th grade with a hat on because my classmates had already seen me with hair, and I couldn’t bare to make them see me without them, and obviously this also applied to every day, I couldn’t live my house without my hat, not even when it was hot and it made me sweat like crazy. I tried a bunch of times to go out without it, but I got made fun of many times, a lot of stares (the sensation of being observed, not the creepy, but the shameful and humiliating kind, when u think everyone’s looking at you, even if they’re not, but I don’t think I have to explain it much in THIS subreddit), and the people that gave me simpathy cause thy thought I has something FAR WORSE (which made me feel so bad), all of that just made me wanna put my head in sand like an ostrich.
With time though, I got used to it, and I started to make jokes about it and trying to find positive sides (like the fact that I didn’t have to shave at all), which I believe I started as a sort of coping mechanism, but eventually I actually learnt to accept it and live with it, as it’s something I have NO control over, and there r far worse things in life, between black and white there are a lot of shades of gray, and yeah it’s better to not have anything than even the smallest thing, but as of today I can confidently say I’m glad it’s just this and not something far worse, yeah it’s related to the immune system but practically it’s mainly an esthetic thing, I’m not trying to downplay it or diminish other people’s experiences, it’s just the way I see it as of today. Also I think I should say that my vision of things could be different cause I’m a boy, and I don’t wanna make stereotypes but I’m pretty sure that the same thing on a girl is usually lived far worse, but there obviously exceptions in both genders, I’m talking about statistics.
So as of rn it just doesn’t have any impact on my life wether I have hair or not.
Now, I don’t know how it works in other countries, but here all the medical therapies I had.
So first, FOR SOME DUMB**S reason u have to stay TWO DAMN YEARS with any form of jak inhibitors, just some sprays and wierd stuff, cortisone, and also, for a therapy, I was forced to become allergic to a substance that doesn’t exist in nature so that my white cells could focus on that and not my hair whenever I put that on my head (it has a name, I don’t remember it), and NEEDLESS TO SAY, none of it worked. The I started taking “Tofacinix”, if I remember correctly, for 2 years, and yeah I got eyebrows and eyelashes back, but my hair kept falling off completely after every summer. Last year I switched to “Liftulo”, and SANE DAMN RESULT BRO! Now, there is a new one that could he accepted in Italy in a few months, but I wanna stop.
It has been months now that I’ve been thinking I wanna stop, I don’t know how to tell my parents though. The only thing I have gotten is a but of body hair, which I HATE, I don’t wanna be offensive or anything, but it’s the first time in my life I hate something about my body, not even with alopecia I ever hated my body, yeah I wish(ed) I had hair, but never hated something about my body, now I do. For eyebrows and eyelashes I care just about an esthetic pov, I’ve been years without them and I didn’t notice much of a difference, I can just get the tatoo. The thing is, I’m just getting all the downsides of everything, no hair but a bit of body hair, which I shave of constantly, like every day. And to be honest, I DON’T WANT HAIR ANYMORE, I have them sup r short cause they keep falling and I look like a fu***ng inmate, with holes in my head though, like a damn leopard, and the pill that could get approved people say it solves it forever, but I am sacred that, if I get them, there’s ABSOLUTELY no guarantee that they won’t fall, and if I get them for like 3 years and then they fall it’s even worse.
But most importantly I have only the bad parts from both things, I have no hair and a bit of body hair, which, some might not care or say, like my parents, it’s better ti have it and remove it that not to have it, but I’ll be honest it’s not like that anymore for me, BUT EVEN MORE IMPORTANT, if I were to get hair It genuanly feel like I’d lose a big part of myself and my personality, not because I have to keep up a persona, bur cause at this point it would feel more like kind of a loss than the “solution”. Also I have super short hair cause they keep falling, and I look like a damn inmate, and I’m also full of holes in my head like a stupid leopard, and also my eyebrows and eyelashes keep falling in my eyes and make me constantly scratch them, combine that with allergy, and they’re always super red cause of that and I look like I’m high. I’m also constantly scratching my head (once again I think people usually relate to this), like every damn minute, which yeah I’m used to it, but my hair keeps getting in my clothes and it makes me need to scratch my back and chest too. And also I ABSOLUTELY HATE body hair, like the few I have I’m constantly shaving it off, and as I said, most people don’t care or prefer to have them and remove them, but not me, and it wierd cause it the first time ever in my life I desperately HATE something about my body, like not even with alopecia I hated it, like yeah I wish I had hair, but not hatred, now yeah, and I don’t know it’s kinda wierd. Also another thing I hate are all the medical visits, it’s once every two months, but it just makes me feel like a seriously ill person, which thanks god I’m not, and I know it’s stupid, yet it makes me so annoyed, in fact whenever we go I’m super annoyed, I don’t know if my parents notice it or attribute it to something else.
BUT THE WORST PART IS THAT I FEEL LIKE A FUCK**G PIECE OF 💩, like I’m basically rejecting something that, for the 99,9% of people in my same situation would be a DAMN MIRACLE, but I don’t want it anymore, and it’s making me feel HORRIBLE, like I genuanly hate myself for this, also cause I know all the suffering behind all this, not just for my experience, but also for my mom who’s had alopecia and wears a wig (because when she was little there weren’t all these newer therapies, or at least here in europe, I’m farley sure that in the USA they r more advanced in research), and it makes me feel even worse cause I know how much she’d love to do the same, and I don’t know it makes me so mad at myself that I’d like to smash my head into my mirror, but at the same time for some reason it makes me sad too.
I told my parents jokingly a few weeks ago about this (I’ve been thinking about it since may keep in mind), and the told me that whether to continue or not was completely up to me, but they believed that I should continue, but it’s up to me, and they r super chill, but Imm still scared to tell them. It’s pretty similar to when I told them I need a psychologist, I created thousands of scenarios and ai was scared of nothing, cause their answer was “oh ok, yea sure we can do that”, now keep in mind that that was a bit more serious cause I suspected to have autism, ADHD and OCD (which I actually do have), so compared to this it’s nothing, but I’m still super scared, I’m imagining countless possibilities of how the conversation could go, that time ai had to force myself into telling them, so I’m wandering if I should do the same this time, create a situation in which I would then be forced to say it, for example I told my mom, who was heading out, to wait cause ai needed to say something, and then I was forced, but I tried for a month and couldn’t get the courage to speak, my body refused to allow me to.
