It’s Only Hair…

…Except it’s so much more than that. Hair is such an important part of one’s identity. When you look at someone, you immediately notice a few things. Their face, their clothes, and their hair. Some people keep the same hair their whole life. Others change it frequently. They experiment with color, length, and various styles. What happens when that form of self expression is no longer an option? Let me tell you a little about my experience with hair. Or rather, my hair loss.

Up until about 8 years ago, I had long, beautiful, curly hair. I loved keeping it long and wearing it down most of the time. I also loved that if I wanted to tie it up, it could still look beautiful. I had the kind of hair that you often see in old Medieval art. It had long tendrils and corkscrews that cascaded down my back. I liked keeping it long enough to reach the middle to bottom of my back. It was a lot of work to maintain, but I loved it. I’ve tried different colors for excitement like red or blonde highlights. I found my natural brown color to be too boring.

For most of my teenage and young adult years, I was known by my hair. I was always “the girl with long curly hair”. It was the first thing anyone noticed when they looked at me. It became who I was. I felt beautiful, feminine, and sexy. I felt that my hair was my best feature.

After the birth of my 3rd son, I wanted to try something new. I decided to cut it short and experience life with this new easier-to-maintain hair style. It was cut just above my shoulders. I felt light and free. I loved it. It was cute and mature. It gave my face a whole new look as it seemed to make my face appear rounder. I experimented over the years with different shapes, colors, and styles. I had plans to grow it out again one day, but that was for the future sometime. I kept it this way until last summer. That’s when things changed drastically.

One of the many side effects of my disease is hair loss. I’d had thinning hair on and off over the last handful of years. I didn’t think much of it at the time since it was more of an inconvenience with my bathroom drains than anything. I didn’t really notice any difference in my appearance. About 2 years ago, I noticed that my hair didn’t seem as full as it had once been. I noticed that when I pulled my hair back, my scalp was becoming visible on the sides. “No biggie” I thought as I just wore my hair down to cover it up. This worked for a little while, until it didn’t. My hair started to look stringy and thin. It was becoming more see through. I noticed that when I pulled my hair back into a ponytail, I had less hair to hold onto. It was noticeably thinner. I also noticed that my shower drain was clogging much more often than before. I had hair all over my sink and floor. My brush had to be cleaned more often. The truth was smacking me right in the face. I was actually losing my hair this time. This was a hard fallout that lasted about 6 months, and it was starting to show.

I became obsessed with the fallout. I’d use a fine toothed comb and pull it through my hair obsessively. I’d brush a small section a few times and watch how the bathroom counter became covered with my hair. It was terrifying, yet satisfying at the same time. I got some kind of sick satisfaction out of seeing how much fell out each time. I definitely didn’t enjoy the loss, but I couldn’t stop touching, brushing, and playing with my hair. Maybe this was my way of accepting the inevitable. It’s like I was watching my own medical specimen as the disease progressed. The rate of my hair loss was a scientific observation to me. I am obsessed with science, especially medical science. I find it extremely fascinating to learn about my disease first hand. I like trying experiments with food, medicine, lifestyle, etc. to see if and what effect it has on my health, as if I’m my own lab rat. I’m a weirdo. I know.

Anyway, by last winter, I’d realized that I was a past the point of denial. I could no longer pretend that I was imagining this. My hair was mostly gone. Whatever was left of it was almost shoulder length and I mostly clipped it back into a tiny bun to try to disguise it. When I realized that my bun was getting small and smaller, I knew this was real. I decided one day as a last ditch effort to leave my hair down and style it the way I normally do. Maybe I was imagining all this and it really wasn’t that bad. So I styled it, and took pictures. It was terrible. This was my epiphany moment. There was not much there. It was thin and wispy. I looked like an old lady with just a few sad strands of hair on my head. Oddly though, I wasn’t bald. My scalp had remained mostly covered, which helped to hide the hair loss. I figured out that almost as quickly as it fell out, it started growing back but thinner. I had new baby hair growth mostly on the top so my scalp stayed covered. It tricked me into thinking the hair loss wasn’t that bad. Except it really was. I realized it was a lost cause and any of the remaining long strands needed to go. I was hanging on to it for no good reason at all. I decided it was time to for it to go.

At first I thought of shaving it. The most extreme thing seems to be the first thought. After sleeping on it, I decided to just go with a short boy cut. I didn’t have bald spots so I didn’t need to shave it all off. The new baby hair did a good job of covering my scalp so I used that to my advantage. I made an appointment with my salon and was sitting in the chair by Saturday. When I told my regular stylist to just cut it all off, she was shocked. I explained what was going on and she went ahead and started cutting. There was no shaving. Just a lot of close cutting. She was wonderful. So kind and patient. She promised not to make me look like a man. As she cut, I cried at the reality of the situation, but I told her to keep going. Finally it was over. My hair had never been so short in my life. It was a new experience for me. I hated how short it was, but I knew it had to be done. It was a cute cut, although I hated it in general. I hated that I was forced to make such a drastic change. My hair… my identity was gone. Just like that. I instantly felt unattractive. I didn’t feel like a woman. I felt ugly. I was embarrassed to let my husband see me. Even though he was supportive, I knew he hated it and he’d find me unattractive.

About a month before actually cutting my hair off, I decided to start wearing a wig to cover up my disgusting mess. With my hair being so important for my image, I made the decision to continue to be fabulous and buy the hair I’ve always dreamed of having. Eddie and I did some research and found a great brand called Jon Renau that makes gorgeous real hair wigs. I needed something that would look like real and not scream “wig”. I’ve always dreamed of having long, wavy hair, so I found the longest human hair wig I could find. I chose a gorgeous red color. It was quite expensive (over $2000), but worth every penny. It took some practice to get used to wearing, both physically and mentally. It took a lot of convincing to actually be seen with a wig. Once I bit the bullet and finally went out in public with it, I felt better. It could pass as real hair and no one noticed. I had to figure out how to handle seeing people I actually knew. Clearly, my hair hadn’t grown so long in only 3 months (during the beginning of the Covid lockdown). I felt like a fake. Like an imposter. I decided to just come out with it and be honest that it was a wig. I lost my hair, and this was how I fixed it. I had to be ok with it. So I tried my best to have fun with it. I ended up buying 4 more wigs. Different colors and lengths. I had a blue one, pink one, long, short, bangs… I was buying all the hair I wished I had at some point and was living out my fantasy. It WAS actually fun for a while. Each wig was like a different character. It was like deciding on an outfit for the day. It was exotic, ridiculous, and a little silly. I just went along with a smile.

I wore the wigs daily for about 6 months. When I had my surgery this past November, I stopped wearing them altogether. The surgery also triggered a nasty flare that I’m still feeling in January. I was too sick, exhausted and in pain to care. I didn’t see anyone or go anywhere. I couldn’t get dressed and dolled up like before, so what was the point? I had to just accept what I looked like. At this point, my cute boy haircut had grown out into a curly mess. Too short to do anything with and too long to ignore. I tried my best to make it work. I bought headbands, hats, fancy hair clips and experimented on the days I didn’t feel like total death. I even went out in public a few times without covering the mess. As hard as I tried to embrace my new look, all I saw was UGLY! I hated seeing myself in the mirror. I hated to feel my short hair. I hated how I looked! This was on top of my drastic weight loss which caused my boobs and butt to shrink to flatness. I was a shapeless, bony, hairless, sick, ugly thing. My beautiful hair and female curves were gone. I felt ugly and disgusting. I did not feel like a woman anymore. I wanted to cry everyday. Some days I actually did. I apologized to my husband daily for being so ugly. I stopped getting dressed and putting on makeup. I avoided mirrors and wore hats most days. I hated myself! Depression started to set in.

I decided a few days ago I was tired of feeling this way, so I started wearing my wigs again. I needed to feel a little pretty again. It played some mind games with me though. My neighbors and school bus drivers had all seen me with short hair all this time. I had to mentally prepare to be fake again. I had to build up the nerve to deal with the questions and have a quick explanation ready to go. Even though I may seem cool and confident on the outside, I am burning on the inside. I feel embarrassment, shame, confusion, fear. I feel like I’m deceiving people. It feels like an elephant in the room. I can’t stand how people deal with it. They seem embarrassed for me. Like wearing a wig is some kind of terrible thing that they have to politely ignore. I combat this by trying to be obvious about it. I’ll say “look at my gorgeous new hair” or “I lost my hair so I bought the hair I’d always dreamed of”. I try to make it fun so they’ll feel less awkward. To be honest, it is fun to choose different hair each day… at times. Not all the time though.

I still cry some days. My insides burn as I desperately want my own long, curly hair again. I keep saying I want to grow it out long again, but I know this probably won’t happen. Even though it is growing back nicely, I can see it thinning on the sides again. I see my sink filling up with hair again. I know I’ll probably never have my long, gorgeous hair again. It crushes my soul that its gone forever, but I’m a realist. It would take me 5 years to grow it that long again. I also know it’ll never be as thick as it once was either. It will always be thin and stringy by a certain length. I’ve noticed that I have a big fall out about once a year. The last one was by far the worst, so I don’t expect it to suddenly get better. I grieve for my hair. Seeing old pictures of me with long hair makes me tear up. It’s like seeing a picture of a lost loved one. It hurts. As a woman, losing my hair was devastating. I never imagined that I’d face such a thing at any point in my life. Then again, I never imagined how immobile and disabled I’d be at 39 either. Life likes to throw curveballs and I got hit right in the face!

For now, I have to just get used to wearing wigs again. Maybe one day my hair will be long and beautiful and make me feel like a beautiful woman. I can dream.


2 responses to “It’s Only Hair…”

  1. Wow! Thanks so much for sharing your story! Your journey of hair loss was interesting and so relatable. I started losing mine around your age too. It kept growing back but the hair follicles became thinner with every regrowth. I’m now 65 and my hair is very thin and lifeless. Not bald yet thank goodness but I have to work with my hair a lot to hide my scalp. It’s something that I just had to get use to. But I still hate it. I usually wear a cap when I’m outside to protect my scalp from the sun. Good grief, It’s hard enough dealing with this disease and being sick a lot without having to deal with this too. Oh well, no choice but to carry on.
    I love your wigs! Very natural looking. ☺️
    Take Care!

    Liked by 1 person

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