What It Was Like Living With a Shaved Head Due to Medical Hair Loss

The first reaction I witnessed when my hair started to fall out was my own. The hair loss was a side effect from one of the many medications I was maxed out on, trying to control the seizures and bouts of paralysis I was experiencing every day. Another side effect was massive weight loss. Between the two, I found it extremely alien and mildly terrifying to look in the mirror. Who was that creature, that small shadow of who I was just a while back? I was very self-conscious, which wasn’t helped by the fact that many people treated me differently once I didn’t really have hair. After about eight months of bald spots and itchy scabs, I decided to shave my head so that I could easier apply healing salve to try and help those spots recover.

Once my head was bare (or mostly bare, since I did have some fuzzy bits peeking through) I quickly realized that it wasn’t just my own reaction I’d have to deal with.

Of course there were the standard Sinéad O’Connor and Britney Spears remarks, with a few unsavory skinhead jokes mixed in.

There was also an eerie difference in treatment based on location. On the streets I was just another 19-year-old hooligan, a wild child rebelling against social norms. In the hospital I was suddenly given more room in the hallways, offered wheelchair rides, and sensed the occasional lingering look. Even though I’d been visiting that place on a weekly basis for months, it was suddenly clear to passerby that I was a patient instead of a guest.

Before I went bald, I was already unsure of myself, afraid of letting other people see my illness, see everything that I was struggling with. I was supposed to be strong, I was supposed to be cheerful, isn’t that what people are supposed to do? Hide their troubles from the world? The six months or so when I didn’t really have hair was the first time my invisible illness actually had some visible markers, but it wasn’t exactly an obvious sign. So when people assumed it was purely a choice that I shaved my head, I would rarely correct them and share my story. I wanted it to remain hidden, something others wouldn’t see, and in a way I put myself farther in my little box of denial than I’d been before. Maybe the recently-confident-me wishes now that I was less self-conscious then, but at the time that’s where I was, and other people’s comments added to my distress about my appearance and identity as a person with multiple undiagnosed illnesses.

Once someone commented on my shaven head, “Well now’s the perfect time to do that — you’re still young, you can get it out of your system before you have any real responsibilities or image to keep up.” I could sense my reaction burning deep in my gut. That had nothing to do with it! I actually saw myself as extremely responsible and mature for my age. I also spent way too much of my energy attempting to conform to the image others expected of me. And of course, I wouldn’t have chosen to do this under different circumstances. Hurt, I nearly spat back at her that another perfect time to chop your hair off is when half of it is already falling out in bloody clumps. I kind of wish I did. But I didn’t want to be rude; I didn’t want to make her uncomfortable. I didn’t want to draw any more attention to the state of my health than necessary. Because of my timidity, she will never know that her comment didn’t match my experience at the time. She will probably never know that I was very sick at the time, and that her comment stung, even if it was unintentional.

Occasionally someone would see me from behind and address me as “sir” and then stutter an embarrassed apology when I turned around and they could see more than the back of my head. An understandable mistake, but nonetheless strange encounter, that I always brushed away with a quick smile and a whispered “no worries.” One time I had another person (a drunken stranger, to be exact) scream at me from the safety of the other side of the street to stop pretending to be a boy.

Of course, my experiences with other people weren’t all negative like that. I moved into a housing cooperative and ended up shaving my head about a month or so after I moved in. Everyone there was awesome. A few people actually helped me buzz my head the first time. A housemate wielded the clippers on the front porch and peeled away that layer of comfort that was my hair. Another housemate waited patiently, assuring me that it looked great, then switched spots with me and also got a new hairstyle, a tiny fohawk, which was, admittedly, a bit funkier than mine. At one point, four of the 18 of us living in that house had either no hair or practically no hair for various reasons. That, among many other things, made me feel normal. Proud. Accepted. Confident. They were supportive and caring and always had a listening ear or helping hand available. With their help, I managed to take the first tentative steps towards accepting my health problems and how they’ve affected me.

Unfortunately that confidence didn’t extend beyond my house for quite a while. Whenever I
Skyped my parents I would wear a hat, because even though they knew about it, I didn’t want them to have to see. I didn’t pose for any pictures when my head was super bald, but I did manage to muster up the courage for a few as it was starting to grow back in. A few other things helped me gain this confidence:

My sister had to draw our family for a school project and the floating, cute cartoon head
that resembled me had big, beautiful eyes and a tiny bit of peach fuzz on top. A little note scribbled next to my name said, “She lost her hair, but she’s still beautiful.” When I saw that, I had to smile.

A woman at my work came up to me and said that she absolutely adored my hair. She was the
first person who wasn’t a friend to tell me that. She then went on to tell me that she had breast cancer six years prior to that, and that she loved it when it was just starting to grow back in because it was so easy to take care of. She said her face was too round to keep pulling it off now, but that it worked really well with my frame. She told me that if it ever started to grow out, I would be super beautiful if I chose to keep it buzzed. That was really cool and exactly what I needed to hear in order to start wearing my hair (or lack thereof) proudly.

My hair has been back and mostly healthy for four years now. I actually sometimes look in the mirror and have this massive urge to shave it all off again. One plus of having no hair? No need to wash it. Or brush it, for that matter. There are some days where the brush is too heavy, my neck too unstable and just attempting to make it lie flat takes a good chunk of my allotted energy for the day. Part of me likes my hair, though. I love being able to brush my fingers through it and know that I only have one tiny bald spot left over.

Even though I’m confident now and no longer afraid to talk about my health issues, another part of me doesn’t want to go through being self-conscious again. It doesn’t want to have to handle the stares, questions and comments again. So for now I will hold onto my hair, but also the lessons that I learned about myself from the time when I didn’t have any.