Prolonging the Inevitable: My Life with Androgenic Alopecia

Photo by Bennie Lukas Bester from Pexels

As a kid, I had an abundance of thick, long, brunette hair. Despite possessing the ability to pull off every variation of ponytail and braid that accompanied 80’s/90’s fashion trends, I despised how quickly that hair morphed into a fluffy, frizzy mess at the first sign of humid NY summers. Only an obscene amount of hairspray or gel could tame it, leaving me with hair so crisp, I imagined it snapping in half. It feels like a lifetime ago — these days, my hair resembles a tumbleweed more than anything.

I was diagnosed with PCOS (polycystic ovary syndrome) as a preteen. I was prescribed spironolactone and oral contraceptives, but was admittedly noncompliant. Some time later, my hairbrush noticeably began holding more strands than before. Naively, I hoped this would somehow lead to having those enviable silky smooth locks flaunted by supermodels in shampoo commercials. Dissecting my reflection each day, there was no cause for panic, no visible indications of the journey that would consume the next twenty plus years of my life.

One day, my mother pointed out that the front of my hair was thinning. I wasn’t bothered by it, but we were off to the doctor, where I received a diagnosis of androgenic alopecia (also known as androgenetic alopecia or female pattern baldness). An unfortunate symptom of PCOS, it felt as though I’d become a poster child for the condition. Suddenly those visions of a future with commercial worthy hair were replaced by visions of a shiny, bald head. It was time to panic.

“No cream, shampoo or magic pill could restore my hair to its former glory, and I had to accept that.”

My dermatologist confirmed androgenic alopecia to be incurable. Topical treatments (such as minoxidil) and prescription medications (spironolactone) might help simmer loss but, outside of that the well was dry. No cream, shampoo, or magic pill could restore my hair to its former glory (frizz and all), and I had to accept that. As time went on, that fact became the hardest pill to swallow.

Choosing not to pursue topical treatments, medication just needed to work. Struggling to take pills consistently, I began making an effort as visions of a bleak future lingered in my head. Topicals came with the promise of shedding before potential regrowth (normal, yet I feared the worst), but the idea of having to apply it perpetually was too daunting. Hair loss was unavoidable, it was only a matter of how much and how fast.

The back of my head remained pretty lush for years, while the front continued, and the crown area began to decline. Already self conscious with excess body hair, weight gain, and acne — hair loss was evolving from manageable to becoming the largest thorn in my side. Hours spent in front of two mirrors (one to perfect the front, the other to ensure no scalp peeked through the back), I felt cursed for having dark hair.

Various volumizing sprays and thickening products were standard, and the part could be adjusted. However, sometimes even my best efforts failed to be sufficient. My body filled with frustration and I’d burst into tears as I wished to be anybody else. Anxiety attacks became a mainstay. Plans cancelled last minute, events skipped. Nobody understood what it felt like as I stared into the mirror wondering what it would take for me to step foot out the door. To everyone else, it was just hair.

Family and friends attempted to empathize, but repeatedly hearing “It doesn’t look bad” or “Well, I can’t tell”, only added fuel to the fire. My reflection confirmed fears while feeling invalidated by the well meaning people surrounding me. Sure they couldn’t tell that my scalp wasn’t peeking through my near-black hair, but I could, and I knew they were only trying to spare my feelings. Essentially, I was being gaslighted before ever knowing what it was.

Soon after meeting my husband, I took a gamble, unloading all of my baggage. PCOS, body issues, hair loss, plummeting self esteem — you name it. Without a shred of hesitation, he held me close while I cried in embarrassment and relief. From that point on, he became my official hair inspector before we went out. Having someone ringside to my meltdowns felt awkward, but his honesty and empathy provided encouragement when I knew damn well I would’ve bailed otherwise. He wasn’t always successful, but his efforts were welcome and appreciated.

“Nobody understood what it felt like as I stared into the mirror wondering what it would take for me to step foot out the door.”

Years later, in preparation for our wedding, I ordered a cheap synthetic clip-in piece to cover my ever-thinning part and the small patch that had become increasingly obvious on my crown. It’s not uncommon for women to seek the assistance of “helper hair” for their big day, and I was no different. I knew that if even one photo came back exposing any portion of my scalp, it would linger like a raincloud over what was supposed to be the happiest day of my life. I wanted to know that at least for one day, my hair would be perfect — and it was.

That strip of synthetic strands gave me confidence for several other occasions until the loss became too great. I got by utilizing hair fibers to fill in the gaps for a while, but ultimately needed more coverage. Diving into the vast world of alternative hair, I immediately realized how overwhelming and pricey it can be. Varying densities and cap sizes. Lace fronts or silk tops. Wefted vs hand tied. My head was spinning.

While browsing social media, I discovered hair toppers (smaller than a wig, bigger than a strip). It was exactly what I needed! I took the plunge and purchased a silk top human hair topper. It wasn’t cheap, but a necessary investment in attempting to feel like myself again. After being professionally cut and styled, I wore it occasionally. Now instead of being self conscious over my scalp showing, I was convinced people were ogling the too perfect hair I suddenly had. Due to this, it’s spent more time in the box than on my head.

“I’ve come to learn that the hair on my head (or lack thereof) does not define my worth.”

Consistently on spironolactone for a fair chunk of my life, I believe it helped prolong the progression. That said, over the last year, I’ve shed more than ever. Perhaps exacerbated by the stress of quarantine, not only did my hair get thinner all around, but the texture diminished to wispy, frizzled broken strands. Blood tests confirmed hormones, vitamin levels and thyroid panel all to be in the normal range. The answer, as always: androgenic alopecia.

Countless tears have been shed as I’ve mourned losing a piece of my femininity (I can thank PCOS for the rest). While being a woman is more than having long, flowy hair — having wispy, brittle strands fall where they may is a constant reminder of what once was. The grieving process has been long and dismal.

I’ve come to learn that the hair on my head (or lack thereof) does not define my worth. It has, however, impacted my self image. Days spent wallowing, not recognizing the person staring back at me in the mirror. Moments contemplating shaving my head. Hours of wig shopping because eventually I’ll need one. A constant tug of war to gather the mental strength to wear my topper on a regular basis because either way, I’m still self conscious (I’m told this goes away the more you wear your wig/topper).

Despite androgenic alopecia being a legitimate medical diagnosis, insurance companies don’t always view hairpieces as medically necessary. For instance, my insurance states, “services related to androgenic alopecia, ongoing treatment of hair loss and items used to cover thinning/bald spots (including “cranial prosthesis”) are not medically necessary.” Essentially we’re told it’s cosmetic and are left to figure out how to cope with devastating physical and mental components.

I did not choose to have androgenic alopecia. I did not choose to have PCOS. I don’t readily have several grand to shell out on a hairpiece. I don’t know if or when I’ll gain the strength to wear one daily. Every day I’m forced to cope with hair loss. Each day is a process, a routine I’ve been forced to master. Day after day, I miss that obnoxiously thick head of hair — frizz and all.

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