I’m 20 Years Old, and I’m Losing All My Hair

My battle against an invisible illness.

People often tell me they love my hair.

“It’s so beautiful!” They exclaim, stroking it through their fingers. It’s long, trickling past my breasts and almost reaches my belly button. Messy waves dance down my back. The ends are healthy. It’s the hair I’ve been dying for since forever.

But it’s fake.

A few years ago, life gave me the best gift I’ve ever received- Great Lengths hair extensions. They’re basically real hair. Nobody has any idea I wear them, and even I hardly notice. They are an absolute miracle.

I was only thirteen when my hair started falling out. Well, not falling out, more like breaking off. I’d be brushing my hair, and clumps would just snap off from the ends. I remember gathering all my hair off the floor in horror and looking at it in my hand. It felt like I was dreaming.

I never colored it, styled it with heat, or did anything damaging. I began taking prenatal vitamins and eating healthier, trying a thousand different brands of expensive shampoo, and I even bought a silk pillowcase. Nothing worked.

Why was this happening?

I decided bloodwork might be the answer. However, my labs always came back perfect, which infuriated me. Not that I wanted anything to be wrong, but I needed something to be. I prayed a test would show that I was low in some random vitamin, and I’d take a supplement, and live happily ever after.

Some immune tests looked weird, though, proving that I was sick with something. My mom scheduled appointments with a rheumatologist, an endocrinologist, a dermatologist, and all the other “-ologists.” Some of them didn’t know what to think, so they’d just refer me to another doctor. And others told me to gain weight, drink more water, get more sleep — such bullshit. (If nutrition were the issue, I’d have mermaid hair by now. I take a concoction of vitamins.)

Finally, one summer, my hair began to look better. It became less brittle, smoother, and so much easier to manage. I thought I made it to heaven, that I’d won the fight.

But then, it began breaking off again. My heart broke along with it. At that point, as I watched it continue to get worse, I surrendered the war and got extensions so I could hide my biggest insecurity from the world.

It continued in this cycle- for a few months, or summer, I’d have pretty hair. I’d get my hopes up, only for it to just fall out again. And then a year or two later, it would start getting better. And on and on and on. I even stopped wearing extensions last year because it looked healthy enough to show to the world.

Also, my body and mind just felt good when my hair reached its healthy stages. Physically, I wasn’t weak or tired like usual. My depression and anxiety lifted away, and I could sleep with less medication. My motivation burst through the roof. I could focus, read, write, and everything in between without my ADHD medicine. I could run without my muscles cramping, and stand up without blacking out. I could breathe again, completely filling my lungs with fresh air.

Now, a year later, I’m waiting out another “bad phase.” I didn’t care much, but a few weeks ago, my actual extensions started falling out. I panicked. My hairdresser squeezed in an appointment for me to get them redone. Once she took them all out, my hand instinctively tried to feel my hair. I reached back and felt… nothing.

I turned my chair around to face the mirror and gasped. The hair I did have left hung to the middle of my back, but it was so thin that you could see straight through it. Never, ever in my life had it gotten this bad.

I choked back heavy sobs. “Um… that’s not normal.”

My hairdresser looked shocked. She’s been on my hair journey for a while now and seemed just as devastated as me.

“You need to see a doctor,” she replied in horror. “You look like you’re sick.”

She was right. Without my extensions, I look like I’m withering away. A close friend of mine from high school, Kayla, got sick with an autoimmune disease and was in the hospital for months. She lost almost all of her long, thick, blond hair. I immediately thought of this and realized that my hair now looked like hers did back then.

Something’s wrong with me.

Although I am used to the feeling of having very little hair, it has never been as severe as it is now. I’m not sure how to describe my feelings. Gut-wrenching. A wave of nausea hit me the moment when I reached for my hair but found nothing to grab.

I feel guilty because I still have healthy hair on my scalp. Some people go bald. Some people lose their hair to cancer.

I feel superficial, as though I shouldn’t pity myself over something as petty as hair. “Pretty little princess rich girl,” as someone said to me once.

I feel scared because if I lose any more hair, I probably won’t be able to wear my extensions. If that happens, I’ll be left with nothing but a few strands reminding me of what I had. I’d probably have to wear a wig, too. A fucking wig. Kayla eventually ended up with one.

It’s not just about the hair, though, which gives me the most anxiety. Other symptoms bother me as well. I went to see a doctor yesterday who told me to see a neurologist because it could be multiple sclerosis, and I’d need an MRI. What? Me? My mom is talking to her friend/doctor at Duke. I want answers so much, but what if it is multiple sclerosis or something like that? What if I finally find the culprit, but it’s a progressive disease without a cure?

Photo by Hailey Reed on Unsplash

However, I feel hope above everything else. Whatever is happening in my body, I’ve had for seven years, and I’m still okay. I’m still living my crazy life like an ordinary twenty-something. I’m lucky my dad is supportive and told me to do whatever it takes to figure this out. That I’m not allowed to worry about the money part.

I’m hopeful that one day, I’ll be back to feeling on top of the world again. I’ll finally have my own beautiful mermaid hair that people compliment, and I won’t feel like a fraud for pretending it’s mine — because it will be.

21. Philosophy student. Learning what it means to be a writer, one mistake at a time // caelyyyn@gmail.com

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