How I've Learned to Cope With Losing My Hair Due to PCOS

I remember the day I first realized I was losing my hair. I was in the bathroom at my grandmother’s apartment. The side part in my chocolate-colored hair looked very wide and my scalp peeked out in various spots. Anxiety quickly gripped me in the chest; it felt like a fist was squeezing my lungs. That sensation soon turned into a heaviness in my stomach. Overwhelmed by embarrassment and fear, I wanted to cry but no tears fell. That day was nine years ago.

After realizing I had gradually lost a great deal of hair, I began noticing other worrisome problems. I had long struggled with weight, but it seemed like I was gaining pounds much faster than usual. I developed acne along with hairs on my neck and above my lips. My menstrual periods completely stopped. By the time I finally got up the nerve to visit a physician, I had gone over a year without a single period. I was horrified by what was happening to my body, and I often isolated myself at home. The thought of someone teasing or rejecting me over my appearance was excruciating, so I thought it was better not to even risk it.

 

When I first broached the topic of my symptoms with doctors, I was met with a lot of shrugged shoulders and lectures about weight loss. For some of them, weight loss was the cure for all known ills. Their stance was that I would have clear skin, better hair and regular periods if I was stricter with my diet and dedicated to more strenuous exercise. “So, it looks like you haven’t lost any weight since your last visit,” said one physician’s assistant, as I sat half naked on an examination table. “Are you taking this seriously?”

I experienced scenes like this over and over, and I’d rarely do more than nod and look down to study the tile patterns on the floor. Humiliation sucked out all the air in the room in these situations, leaving me tongue-tied or silent. Any feeble attempts on my part to explain that I was following healthier lifestyle habits were met with skepticism or even hostility. The reading on the scale was all that mattered. And since the scale wasn’t moving in the right direction, they assumed I was confused at best and lazy at worst.

Over the next few years, my symptoms worsened as I fought to find a physician who could make some sense of what was happening. My despair tightened around me with increasing strength, eventually enveloping my entire home with the fog of hopelessness. I was in a loop of agony that began with me crying during my morning shower and ended with me crying myself to sleep at night. Depression seemed to burn my very essence, making me unrecognizable even to myself. There’s a line in a Travis song called “Why Does It Always Rain on Me?” that goes, “I’m seeing a tunnel at the end of all these lights.” I’d listen to it on repeat.

Finally, in 2012, I was able to get a firm diagnosis from a physician. She ran several tests and found that my hormone levels were abnormal. That, in combination with the signs and symptoms I was exhibiting, led her to identify my foe: polycystic ovary syndrome, or PCOS. Like many people who learn what causes their health problems, I felt a mix of relief and sadness. I finally had proof there was something medically wrong with me, but that knowledge was also frightening. As the doctor discussed the condition, adrenaline shot through my body like little lightning strikes. It was the fight-or-flight response in action: I knew my adversary and I wanted to knock it out with a few good punches and kicks, but I also felt tingling in my legs that was urging me to run.

But my enemy was within my very own body, and I couldn’t escape it.

That enemy, PCOS, is a complex condition that isn’t fully understood. Its name comes from the prevalence of multiple cysts that form on the ovaries, yet not all women diagnosed with PCOS have these cysts. The abnormal hormone levels, including an excessive amount of androgens, contribute to a variety of challenging issues. Irregular or absent periods, infertility, skin problems, irregular body hair growth, head hair loss, and weight gain are typical problems that those of us with PCOS have to deal with on a daily basis. If those issues weren’t enough to contend with, women with PCOS are at higher risk for multiple life-changing – and possibly life-threatening – medical problems. According to the U.S. Office on Women’s Health, those with PCOS are more likely to develop sleep apnea, high cholesterol, hypertension, type II diabetes, and endometrial cancer.

It’s hard to know how to tackle something that’s so multifaceted and complex. Eating healthy and exercising has helped me keep my condition under control, but lifestyle changes haven’t been enough. My doctor first started me out on oral contraceptives, which, through balancing hormones, help reduce some of the embarrassing physical manifestations of PCOS. Unfortunately, those tiny tablets that millions of women take every day almost caused me to have a stroke. With every attempt to try another birth control pill, I was rewarded with chest pain, legs that felt like dead weights and numbness on the left side of my body.

My primary doctor eventually referred me to a specialist who has studied PCOS for years. “Don’t fixate on the scale. Focus on how you feel and how your lab tests are looking. What’s going on inside your body is much more important than what you weigh,” she told me. It felt as if someone had finally let the air back into one of those examining rooms. There was such freedom in hearing her words, but there was also a limit to how relieved I could feel about her advice; after all, we live in a culture that tells us that we most definitely should worry about the number on the scale. I started a new treatment plan involving metformin, typically used to treat type II diabetes, and spironolactone, a diuretic drug with anti-androgenic properties.

Together, these medications have been instrumental in managing PCOS. Still, we haven’t discovered the perfect dosages that will reduce my symptoms without creating new ones. If I take too much metformin, I have low blood sugar episodes; if I take too little, my symptoms flare up. And I have quite the tortured love affair with spironolactone. The ideal dosage makes my skin flawless and greatly reduces my irregular hair growth – while also making me have prolonged menstrual periods lasting for months at a time. I’m on a much lower dose now that has resolved the bleeding issue, but it is much less effective for treating my skin and hair issues.

With all that’s going on in the world, it may seem that things like hair, skin and belly size aren’t all that important. They have nothing to do with who I am as a woman, as a person. Yet I don’t trust that everyone else gets it. We are inundated day after day with directives on how to look. Women are often told they have to be skinny, hairless, flawless creatures – something more akin to a robotic doll than a live human being. We teach children not to judge a book by its cover, but it seems like all we do is zoom in on the worst features of each other for kicks. And we zoom in on the worst features of ourselves all too often.

That kind of self-punishment is draining, and it led me to complete therapy in order to get a grip on my anxiety and low self-esteem. During one session, my counselor told me that all I see is what I’ve done wrong in life. I don’t see myself as a whole person but rather a collection of failures that no one wants to be around. Logically, I know she’s right that others in my life don’t see me as a walking mass of flaws. Yet anxiety has a rather seductive voice that whispers in my ear when I’m home alone at night. It says I’m too ugly, or I have too many problems to be worth anyone’s time. Those are the really bad nights—the ones where I drift off to sleep on the couch and wake up gasping with a sense of doom. Fear wraps around me in those moments, and it makes me think that life is only going to go downhill from here. Since attending therapy, I have been able to manage my anxiety more effectively, but as everyone with anxiety knows, there are always bad days.

In her book “What Nurses Know…PCOS,” Karen Roush, RN, MSN, FNP, writes that PCOS “should not turn your life into an endurance test.” But that’s exactly what it’s felt like over the past several years. Life with the syndrome means having to always be worried about my organs and how my body functions. It means devoting time each day to ensuring there are no obvious signs of PCOS when I go out into the world. It means always struggling to decide when and if I should tell others about my condition.

It takes a lot of strength to deal with the repercussions of PCOS. I have to remind myself every day that it’s not worth it to dislike myself because of what I see on television or in internet comment sections. I’m smart, funny and imaginative. I love to travel with friends, lose myself in music, wander around bookstores and swoon over British period dramas. I graduated summa cum laude from college, helped adult students improve their literacy and started my own writing business. People tell me they feel safe in my company, and they come to me for nonjudgmental advice. I know how to be the adult in the room without sacrificing the part of myself that’s still just a giggly little girl. I have gorgeous eyes that are the color of the ocean during a storm. How in the world could some missing hair stand up to any of that?

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Thinkstock photo via mixformdesign.