My Invisible Illness Gave Me A Beard
“Hey mom, I just got back to Singapore! Did you see my pictures from Laos on Facebook?”
“Hi, yes I did, looked like you had a lot of fun. But there’s one picture in which I can see your beard — it’s very visible. Take that down before someone sees it!”
My mother had always been bothered by my “beard.” In high school, she would take me to the Indian beauty salons in Toronto and have my face bleached, the smell of sodium hypochlorite overwhelming my senses for days afterwards. But afterwards, my face would glow like an Oscar, shiny and golden, my beard glistening in the sunlight.
Pakistani women are obsessed with facial hair. Our culture is heavily focused on physical aesthetics, and women go to great lengths to fit the very narrow mold of what is considered beautiful. I was in a kind of beauty paradox though — my skin was light, which is highly desirable, but my jet black hair was also extremely visible because of its contrast with my skin color. And for some reason, when I hit puberty, along with body hair I also developed a very thick mane of facial hair around my jawbone. It was a curse, my mother would tell me throughout my youth, and I believed her.
“Mom, is that all you can focus on? Don’t you wanna know what Laos was like?” I was hurt by her statements, but I didn’t want her to know that. I had learned to take the focus elsewhere whenever she’d point out the visibility level of my beard, but I had yet to learn to deal with the emotional sting of such conversations.
“Hmm, okay, do whatever you want…so, how was Laos?”
I was diagnosed with Polycystic Ovarian Syndrome (PCOS) shortly after my 18th birthday. My family had moved cities and found a new family physician who wanted us all to come in for individual check-ups so she could have a record of our medical histories. The day I went in to see her, she first asked about my beard.
“You have a lot of facial hair. Do you have problems because of that? I mean, social problems?”
I was taken aback by her question. No one had ever asked me that, not even my last physician — a male doctor who had been practicing medicine for over 15 years.
“Umm, actually, I do have problems sometimes. I’m not very confident about my looks — I never tie my hair back. I only keep this one hairstyle because I want my face hidden all the time. I’m scared people will make fun of me if they see my face.”
I had never said that out loud in my entire life.
“Hmm, tell me about your periods. Are they heavy? Regular? How’s your PMS?”
Something else no one had ever asked!
“Uhh, they’re actually not that regular. They’ve never been regular. Last year, I only had my period three times. They don’t follow a cycle. But when I have them, it’s very painful. I can’t go to school some days. I PMS a lot; my boobs get bigger, and they hurt a lot too. I worry I’m going to get my period at any moment.”
She was writing all this down and slightly nodding her head as I spoke, almost as though she knew what I was going to say. She then told me to undress to examine the rest of my body.
“You have hirsutism — excessive hair growth for a woman,” she said towards the end of the exam. “Your BMI is also a bit out of the normal range. Do you struggle with weight loss?”
I gently nodded, a little ashamed of myself for not being able to lose weight as easily as others seemed to do.
“I’m going to refer you to an endocrinologist. I think you may have some sort of hormonal imbalance. It’s not normal to have three periods a year at your age, your cycles should have regulated by now. Your hair growth might also be due to that.”
I was shocked! There was a reason I was like this? It wasn’t just a curse? The possibility that I could have been suffering from some sort of medical condition had never crossed my mind. My entire worldview of how I saw myself changed at that moment.
I called the endocrinologist’s office as soon as I reached home and got an appointment for three months later. The wait was absolutely brutal!
The endocrinologist asked me all the same questions as my physician. After our first consultation, she told me we needed to make sure I had what she suspected, and for that I would need to take hormones for a few months and then have my blood drawn to see how the medication had affected me. She also sent me for an ultrasound to get a better look at my ovaries. After a year of testing out various pills and having my blood drawn about half a dozen times, she finally revealed to me the source of all my physical and mental anguish that had plagued me through my teenage years.
“You definitely have PCOS. It’s great we caught it so early. There’s no cure but there is treatment, and the earlier we start, the more likely you are to see permanent results.”
I was relieved. It seemed like the life I had lived up until then hadn’t been real, and the truth was now finally being revealed to me. I cried after leaving her office that day.
Treatment was a whole other monster I wasn’t quite prepared to deal with. I was on hormone replacement therapy and needed to work my way up to a very high dosage of daily medication. One year into the treatment, the side effects started to hit. Nausea, heightened sense of smell, decreased sex drive, and heavy vomiting — I was taking 11 pills everyday at this point (14 counting the progesterone I needed to induce my period every month).
I had also moved away for university during this time, and with no one to take care of me, I had a very lonely and depressing freshman year. If I wasn’t throwing up in the bathroom in my residence, or leaving class early because the nausea was too much to handle, I was usually making instant noodle soup in the residence cafeteria because it’s all I could keep down. I had to control my urge to vomit because I would also be vomiting out the pills and it would have taken forever to build up tolerance that way. Needless to say, I did not make a lot of friends in my first year.
Three years into treatment, things started to change. I’d get my periods more often without needing to take the progesterone. I started losing weight (though that was also partly due to having better control over my diet). My PMS wasn’t so bad and I could take all my pills without feeling nauseous. Things were happening!
After five years of treatment, I felt confident enough to remove my “beard” by getting it waxed. I couldn’t have done it sooner because my hormones were still out of balance and my hair would have grown back thicker if I had tried to remove it. The irony is, by the time I had it removed, it didn’t bother me any longer. Since I had understood it was caused by a medical condition and it wasn’t my fault, I had been much more accepting of it, and of myself, and when I finally had it waxed off, the occasion wasn’t as grand as I had imagined it would be. Life is funny that way sometimes.
Seven years into treatment, my endocrinologist started to wean me off the medication. I booked an appointment to see her, not knowing it’d be the last time I would. I had gotten some blood work done and she had the results to share with me.
“Well, looks like everything’s normal — your periods are regular, your weight is under control, your hair growth has had a considerable decrease. Make sure you exercise regularly and keep an eye on your diet, and everything should be okay. Hopefully you won’t have to see me again!”
She was right. I never went back to see her.
Less than 50% of women who have PCOS are ever diagnosed. It is one of the most common illnesses suffered by women of childbearing age. I often wonder what would have happened if my physician hadn’t known that hirsutism was a symptom of PCOS. Or that having too much facial hair wasn’t something to gloss over or ignore.
Many people, like my mother, think a lot of the symptoms of PCOS are just growing pains, that girls will eventually come out of it. That’s a very dangerous opinion to hold because undiagnosed PCOS can lead to insulin resistance, and eventually diabetes. I was fortunate to have been diagnosed early in life, but not everyone is that lucky. With 1 in 10 women suffering from the condition, it’s time more people understood it and knew how to spot it, doctors included, so young girls don’t have to live with the fear of social ostracization because of an illness they don’t even know they have.
Sharing this story is my way of raising awareness.
