Losing My Hair, Losing Myself, & Finding Me Again

Jun 24, 2024
9 min read

Updated: Jun 25, 2024

While we may not always realize it, hair makes up a big part of who we are. Whether it’s up, down, long, or short, hair is often a way that we signal to the outside world who we are. Even for those who cover their hair for personal or religious reasons are signaling to others what’s important to them. Often it’s an unconscious part of our everyday routine - you get up every day and do your hair. And when that routine is suddenly shifted or in my case, completely taken away from me, it can really make you feel like you’ve lost a piece of who you are.

So I’ve always had pretty long hair and while I’ve cut it from time to time, I’ve always felt my best when my hair is flowing down my back. My hair was also very curly, and while that has posed a bit of a challenge for me, my dad has always told me that people pay serious money for hair like mine.

And while I’ve always been a pro at the messy bun, the older I get, the more I love leaving my hair down and the more I enjoyed experimenting with different styles. I had even started learning more about how to take better care of my curls, prevent my hair from being so frizzy, and generally keep my hair longer and stronger. But when I was going through cancer treatment during my first journey with breast cancer, I lost all of my hair and ended up struggling with some unexpected issues mentally and physically.

Let’s talk about the physical struggle first - as I personally it’s less complex than the mental journey I went on. So when the oncologist says you are going to lose your hair, they don’t just mean the hair on your head - they mean all your hair…. And I do mean all or at the very least it’s going to thin out like crazy. The hair on my arms thinned out quite a bit and the hair on my legs disappeared entirely. It was WILD!

What I’m saying is that you will be looking like a dolphin…. And I bet if you took up swimming, you’d be moving through that water like Michael Phelps.

Losing your hair isn’t painful or anything; but I will say that your skin suddenly feels very unprotected. And no hair means that you can get cold quite easily. Because I went through the majority of my chemo treatment in the wintertime, I tended to wear mostly sweatshirts and sweatpants. I also kept a heating pad on most of the time and I put several blankets on the bed for me to curl into at night. I kept my head covered most of the time for 2 reasons: 1. I was very cold and 2. My scalp was very sensitive to everything and I am pretty sure I got a sunburn on more than one occasion.

Having no hair on my body also posed another interesting physical challenge, I noticed that my skin was pretty dry a lot of the time and I would become “ashy” more quickly than I had before. Because I worked from home and was covered up most of the time when people would see me, it wasn’t too much of an issue, but it was something that I noticed almost right away. I would often have to get my husband to help me with lotion because otherwise, the dry skin would become super itchy, especially my back. And seeing as how I was already uncomfortable, I didn’t really want to add one more thing if I didn’t have to.

Oh before I forget, let’s talk about what happened to my lashes and eyebrows. While my eyebrows didn’t fall out completely, they thinned quite a bit and became pretty patchy. I had to learn how to fill in my brows in order to frame my face and eyes. Took some time to learn and I’m pretty sure I walked out of the house a few times with one brow longer than the other, but I did eventually get there. I’m by no means an expert, but I can get my brows more aligned and even. As far as my lashes, I lost them several times throughout chemo. I’ve always had very long straight lashes and during chemo treatment, they became brittle and weak. In the picture I posted at the top, if you look closely, you’ll see that I’m missing quite a few lashes in the middle. Throughout the chemo treatment and into recovery, I noticed that my lashes would come and go. When they were there, I noticed that they would often break and I would end up with very short broken lashes. To combat some of this and because I didn’t feel my face looked right without them, I learned how to put on magnetic lashes - the kind that stick to a special eyeliner. That helped to mask some of my insecurity and made me feel more normal as my lashes were going through transition.

It took a good long while for my body hair to grow back - probably about 3-4 months before it was noticeable. And it never really came back with the same thickness or dark color that I had pre-cancer. To this day, my body hair is still pretty patchy - which as someone who used to have to shave every other minute in the summer, I am thankful for.

The hair on my head took much longer to come back but I’ll talk about that a little bit later in this blog - I have thoughts and feelings about it.

When it was first brought up that I was going to lose my hair, I played it off as “Whatever it’s just hair”. But if I’m really honest, I was not ready to lose my hair and I’ll be super honest, it was DEVASTATING when I found out from my doctor that all my hair was going to be gone. I Kim K ugly cried on my way home from that appointment. Because I knew I was going to have little choice in the matter of losing my hair, I wanted to make the choice of how the experience was going to go. So I took matters into my own hands and went to a salon and cut my hair really short… AND it was giving Karen…. So I cried some more, and my hero of a husband looked for another salon near our apartment at the time and asked for her help. She rescued me from a horrible haircut and styled it into a cute pixie cut that I was willing to live with. For mental health reasons, I do not have a photo of said Karen hair but basically I went from a cute bob in July to an extremely short pixie for my birthday in September.

Before my hair completely fell out, I would practice wearing headscarves and I bought a few inexpensive wigs so I could practice putting them on. And while it wasn’t quite the same, it did make me feel better and more in control of what was happening to me. I will say that I got pretty good at the headscarves and while my wig skills needed (and still need) some work, having options made me feel better about the whole situation. Plus I got this gem of a photo:

My hair really started coming out around my third chemo treatment right around the first part of October. And it came out quickly. It was there and then it fell out in huge patches. I quite literally had chunks of hair in my hand. And again, because I didn’t have any say about losing my hair, I asked my friend to come over and help me shave my head completely. I have mixed feelings about this point in my journey. While I knew it was going to happen eventually, I was kind of shocked that it came so soon and I was really worried about what my husband and my family were going to think. Looking back at it now, I shouldn’t have been surprised - they loved me through the whole experience. So yeah this is how we lived through most of the treatment: I was bald as Mister Clean, I wore a lot of hats and head scarves and we just lived life the best we could.

Interestingly, it wasn’t until my hair started growing back that I really started to run into a bunch of unexpected mental roadblocks and feelings. You know how lots of babies come out with some peach fuzz on their head? Well, the same thing happens when you’re growing your hair back after chemo. You start with some fuzz and it slowly - extremely slowly- starts to come in. It’s often super patchy and may or may not come in the same texture or color as you had before.

In doing some research into this, I found out that it can take a while for the hair follicles to return back to a normal state. Often the first hairs that come back are gray as the cells that control the color pigment take a while to resume functioning appropriately. When my hair first started coming back in, it sort of had this gray tint to it. It wasn’t until about 6 months post-chemo treatment that I started to see a lot more dark hair coming through. You’re hair is also very brittle during the first stages of regrowth; I experienced a lot of breakage which contributed to the patchy nature of my hair.

Something else to note is that your hair doesn’t all grow at the same rate. The back part of my hair was growing in much more quickly than the top. I often felt like I had an unfortunate mullet which was very distressing. And when the sides started growing in quickly and I was looking like Bozo the clown, I became even more distressed. I often had this feeling of gender dysforia - when I looked in the mirror, I often saw a pre-teen boy. Combine that with having a double mastectomy and a flat chest, I saw a boy in the mirror.

As a cisgender woman, this had never happened to me in my life and I started to get really depressed. I just wanted to hide a lot of the time. I didn’t really want to go out and do things because I would feel people staring at me (even if it wasn’t true). I stayed home a lot during this period, kept my beanie on my head pretty much all the time, and wore lots of baggy shirts that would hide my shape from me and everyone else. I was really struggling and spent a lot of time talking to my therapist about coping strategies to get me through this period. Missing my hair and my breasts just made me really struggle with this feeling of being in the wrong body.

As my hair started growing back, and especially after my reconstructive surgery, I started to come back into my body and feel more at home here. I really struggled and still struggle with the short hair; I just plain don’t like it. It doesn’t feel right to me and it doesn’t match the image that I have in my head about what I look like. When my hair finally got to a certain point in length (about 6 inches all the way around), I was finally able to look for help from someone who could put in extensions for me. And once I got those put in, I finally felt like myself, and my self-image and what I saw in the mirror finally matched. While it’s still going to take a while for my hair to grow back to its natural length - and with this new treatment setback, knowing that I have the option to use extensions to feel normal makes a huge difference in my mental health.

So let’s talk about lessons learned and what I’m planning on doing this time around. My oncologist told me that the hair loss associated with this drug is about 4 in 10 people - and so while statistically, it’s possible that I could have little to no hair loss, I’m not gonna put all my eggs in that basket. I’ve already been noticing some hair thinning in a few places and while I’m not expecting to have huge changes until my 3rd or 4th treatment, I’m keeping an eye on it. I’m doing some research into wigs and getting some further education on how to put them on correctly, make them more comfortable, style them well, etc. And lastly, I feel stronger mentally this time around. Yes, losing your hair SUCKS…. It’s a big blow to the ego and it can give rise to very complicated feelings, but what I’m trying to keep in mind is that I have a great support system all around me.