As much as I hate myself, despise my existence, never feel comfortable in my skin... There is one part of me that I've always loved. I love my hair. I know it's awesome, it's silky and shiny. But, like most things in my life, I have a conflicting relationship with it. I have Alopecia, which is an autoimmune disorder that causes patchy hair loss. There are three variations of it and I have been through them all. Alopecia Areata is patchy hair loss, but there is still some hair on your head and the rest of your body. Alopecia Totalis is hair loss on your scalp, completely bald but you still have other hair on your body. Alopecia Universalis is hair loss everywhere... Seriously. Eye brows, eyelashes, nose hair and ear hair. It isn't life threatening, just heart breaking. I don't want sympathy. "It's just hair," as I tell most people when I'm trying to explain it. But, it's more than that. This is something that has shaped me as a person since I first found out.
Here's my hair loss story beginning to present.
I was first diagnosed when I was in middle school, I was around the age of eleven. I don't remember dates or too much about the whole time, but there are a few things that stuck with me. When I was a child I was quiet and shy, I kept to myself and wouldn't speak unless spoken to. As an Indian girl in a North Texas middle school, I was trying to figure out where I fit in. I could count the other South Asian students in my school on one hand. To make things better I was in middle school in 2001 for 9/11, I spent the next years trying to figure out what the students around me thought... and if they hated me, even though I had nothing to do with any thing. Those next few years were tough because I knew people looked at me differently, but I didn't know what to do about it.
They say Alopecia can be triggered by stress, and I believe that because middle school was probably the first really stressful time for me. Puberty, school, 9/11, facing death of family members I didn't really know, being a shy Indian girl in a predominantly white Texan area. I stuck out regardless of how much I tried to hide behind my long, black, silky hair. Yes. There it is... my hair.
I was at a friends house, and I remember she left the room for some reason and I was sitting there running my fingers through my hair and suddenly felt smooth skin. Really smooth skin where there should have been hair. I remember that day in snippets after that. I remember my heart leaping into my throat while I tried to figure out what I was feeling. I remember the sinking down into my stomach when I felt the two other bald spots. I didn't understand, I didn't know what I was supposed to do. I didn't want to tell my parents because I was so scared, what was wrong with me. Why was I losing hair? When my friend came back I played it cool, pretended nothing was going on and left as fast as I could to go to home.
I remember standing in front of the bathroom mirror at home for what felt like hours while I tried to figure out what to do. I couldn't really see the spots. It was hard to confirm how big they were, or if they even existed. I didn't want to believe it. I sincerely wished I were just imagining it at that point. I don't remember how I approached my mom, or how things went from there. But I remember going to the doctor and being told I have Alopecia Areata and the treatment option was a steroid cream. I wasn't sick but my hair was just falling out.
From the research my mom did after my diagnosis I remembered her telling me it was something that could come back later in my life, and that it could get worse or it possibly would never bother me again. I don't remember how I dealt with it after that, I know that my hair ended up growing back and life went back to normal later. I remember cutting my hair short in 8th grade because my hair had started growing back and I needed to even out the short and long. It was a big deal in school. People I didn't really talk to at all commented on it. I mean, my long hair was my thing. Now it was short. People noticed, but they didn't know why and I didn't want to talk about it. I wasn't planning on telling anyone ever.
Afterwards there was always that nagging thought... how long do I have this hair? Will it end up leaving me again? Will it be worse? What would I do if I were to lose all my hair? Every time I found more hair than I was used to in my hair brush, or in my fingers my heart would jump, and I would quickly comb my fingers through my hair, hoping I wouldn't find any smooth spots. All through high school I worried... and cherished my hair because I wasn't sure how long I have it. Eventually I graduated and went on to college. Life went on, and slowly those worries subsided and I forgot about my once upon a time hair-loss. Until March of 2012.
The first time my hair fell out seemed like a life time ago. I had totally forgotten about it by the time I got out of high school. There were other things going on in my life, new things which kept me distracted. I stopped stressing out every time I saw a little extra hair in my hair brush... or when I was washing my hair and found more than what I was used to. It was almost... almost like in the Lord of the Rings intro (Yes, I am tilted to the nerd/geek side of the radar)
And some things that should not have been forgotten were lost. History became legend, legend became myth... Darkness crept back into the forests of the world. Rumor grew of a shadow in the East, whispers of a nameless fear and the ring of power perceived its time had now come.
All through high school I had hair loss looming over my head, but somewhere things changed. I gained some confidence and eventually got so wrapped up in life and living it that I had forgotten that it was a possibility. I graduated high school, stayed at home and went to a community college. I had a set schedule where I worked and went to school, eventually moved away to go to a university. Four hours away from home, away from friends, lived all by myself. But even that was not enough to trigger my hair loss, so again it stayed hidden and it didn't even cross my mind. The third month into my first semester as a senior, I was going about business as normal. Putting my backpack down after classes were over for the day and suddenly feeling that familiar smoothness on the back of my head... it was hidden, nothing that I had noticed before obviously. At this point it was about the size of a half dollar coin. Again, I couldn't see it so I ran to my boyfriend's room (we were in dorms as seniors) and immediately plopped down face first on his bed waiting for him to get back. Once again most of this is a blur...
I'm pretty sure I was still in shock when he got there, and asked what was wrong. I moved the hair aside when I was laying down and let him look at it. I remember there being silence, and I had to think back to if I had told him about this problem of mine in the past. I know I hadn't completely forgotten about it... I just stopped worrying about it coming back. I asked him if it was there and he quietly said "yes." I'm sure at that point was when I started bawling. I needed conformation that there was something there, or rather, not there.
Most of what is posted above was written years ago. I needed an outlet in college. It was 8 months after I found that bald spot and I was still just patchy at the time. Writing this out had helped some. Anyway, I went on to graduate Dec 2012 patchy. I lost all the hair on my head by May of 2013. By the end of 2013... I was completely bald. Nose and ear hair included. The worst part was not having eyelashes.
I was completely bald for years... and then it suddenly came back in 2018. I've had a full head of hair for a year now. I don't know how to feel about it. When I see people they comment on how great it looks... it does look great. But it's also just really weird... Thanks guys... yeah I'm glad my hair is back but do you also understand how difficult it is for me? I don't have any guarantee that it isn't just going to fall out again. I'm back to how I felt in high school, but this time I have lived through it at its worst.
Yes. It is just hair. But is it really so much to want to have hair? Want to know that when I wake up tomorrow it won't be falling out? I don't really think that is too much to ask for. But I also know that life is unpredictable. While I hated losing my hair... it forced me to become comfortable with uncertainty. I had to be comfortable with awkwardness. I started to embrace it, briefly. There was a small span of time where I really did feel comfortable going out in public patchy or bald. I always hoped I would get back to that point but I regressed after awhile. Went back to hiding. I had wigs and many hats. I used the excuse that my head was cold, I loved hats and beanies. I do love hats and beanies... but sometimes they can be painful. I have glasses and they would get pressed into my head when I wore hats too long. This would trigger migraines.
No matter how much I tried to present myself to the world as comfortable with being a bald women in her early twenties, I couldn't look at myself in the mirror. I looked alien. I was getting really close to getting a tattoo on my head because I was tired of there being nothing there and I love tattoos. I was going to design it myself. A phoenix above one of my ears because I felt like I was reborn when I lost my hair the second time. It changed me as a person, forced me out of my shell, forced me to deal with my greatest fear. I feel shallow that hair loss is my greatest fear... but I'm not scared of death or heights. I hate bugs, but as long as they aren't near me it's okay. So hair loss was always the thing that I feared. I didn't want to be bald. I had to deal with that though. I have hair now and I'm scared that it's going to fall out again.
If it happens again... am I prepared for that? I handled it before. Surely I can manage it again... but at the same time, I don't think I actually came to terms with it. Eventually I was just numbed to caring. I feel as lost now as I did when I lost my hair. I should be happy though? At least I have hair again?