A permanent affliction: PCOS impairs more than just your health

You're not lazy, fellow patient, just affected by an incurable disease

KARACHI:

Some days, I wake up glad—on those rare, joyous days when my monthly cycle decides to comply with its preset schedule. Yes, if you're someone who has particularly painful menstrual cycles or is even loosely aware of that blood-pouring wrench, I understand this may come as a shock to you. What person of sound mind likes having periods?

Well, thanks to Polycystic Ovary Syndrome (PCOS), I do. Or at least occasionally, anyway. I look forward to the rare times when I am not visited by a cycle that drains me until I'm stumbling on my feet, forced back into the seat I made the mistake of rising from. Silly, presumptuous me. After all these years, haven't I learnt that I must calculate every stretch of my limbs before attempting to move?

A common struggle

Another fact: I'm not the only one plagued by these perils and constantly subdued by their accompanying symptoms. According to the latest statistics from the World Health Organisation, PCOS affects around 8 to 13 per cent of reproductive-aged women, with 70 per cent of women remaining undiagnosed worldwide.

But don't you worry. The infamous PCOS—the invisible horror that tends to surprise its patients with every turn of life—is only a lifelong condition. And life is short, right?

So short that you can feel it slip as you lie immobile in bed, feverish and nauseous, desperately clinging to medicine and praying for a miracle to restore your haemoglobin levels because you have a final exam tomorrow. In fact, you should be practising some equations, not moping about how bilious you feel.

Perhaps, you should be wondering how you're going to make it across campus the next day, or at least tripping over the guilt of using your parents or friends as crutches when you're not tripping over your own figure. What a waste of a perfectly good body and everyone's precious time, you think instead. How will you ever achieve that independence you've been aching for if one bad, month-long bleeding period has rendered you utterly incompetent?

Now you're just chastising yourself. Why? You were diagnosed with PCOS years ago. This is only a harsh consequence of what was already happening to you. So when exactly did it start?

A baggage of symptoms

Let's review life as you've known it, ever since it changed completely. As a tween, you were never fond of desserts nor did you ever truly concern yourself with eating more than what your body required to frolic in the streets with your friends for hours on end. However, since your diagnosis years ago, you developed an intense craving for sugar and binge-eating that you still grapple with. And no, this is not about body positivity; it's about eating for the sake of it. Because, simply put, you have nothing better to do.

Being a common PCOS side-effect, insulin resistance becomes an increasingly clingy companion once you get diagnosed. It affects the regulation of glucose/sugar levels in the blood, thereby making you long for sweets you were once indifferent towards. There's an extra slice of cake in the fridge? You'd help yourself to it. You're at a buffet? It is imperative that you eat until you're satiated. You can't help it. You lose sight of health concerns during such moments.

And once you've had your fill, the dread follows—self-imposed guilt and the dooming realisation that the consequences are lingering just around the corner. You'd be lucky if you don't wake up with an acne breakout the next day. But you—pitiful, substandard, poor thing—are rarely ever lucky. More often than not, your skin would be red with those stubborn, nerve-tingling spots that take weeks and heavy medication to disappear.

But your symptoms don't end there. You learn of this funny word, "hirsutism", which is meant to explain why you have an eager spurt of hair growth all over your body, even your face. That, however, does nothing to justify why you're losing hair on your scalp at the same time. Compensation, perhaps. But you never asked for any of this.

At least the multiplex case of your symptoms isn't lost on professionals. In conversation with The Express Tribune, Dr Rimshaw Raees who works at Medicare Cardiac and General Hospital shared that PCOS is an ever-changing condition, which goes as far as triggering thyroid issues. "Now, even a lean category of PCOS has emerged, which strays from the usual obesity concerns," she said.

A lifelong malady

Life tends to slow down once PCOS becomes a passenger on the rugged journey, and not in a good way. From chronic fatigue to irregular periods, everything between your circadian clock and your infradian rhythm falls into disarray. As you unwillingly battle with all of this, you discover that not only is PCOS a leading cause of infertility, it is also an incurable disorder that will persist for the rest of your life.

"It definitely has a great impact on a patient's well-being, especially knowing you have something that can't be fixed with a temporary dose," validated Dr Rimshaw. "You have to change yourself completely for life, and even then hundred per cent results can't be guaranteed. The mental impact is severe. The hormonal imbalance affects your social life as well, causing mood swings, depression, and even pain in the affected areas."

And so you lie restless in bed, undoubtedly in anguish yet still forcing yourself to believe the know-it-alls. Maybe they're right; maybe you don't need to worry about this until you're married, after all. The thought doesn't comfort you one bit. This is not about Schrödinger's child from some potential future. This is about your present, which grows bleaker the longer you abandon it to the past.

Your condition accounts for your sedentary lifestyle, sure. The problem is, you've all but surrendered to it. As your professional priorities solidify, you begin to view a robust routine as a sport for the wealthy. You're called out for slacking off at work, even though you ensured you were well-rested the previous night. You spend every minute in class blinking your drowsiness away, hoping your instructor doesn't notice.

It is affirming when experts like Dr Rimshaw inform you that the luxury of maintaining a personal routine is a natural challenge for working women with PCOS, especially those bound by shift timings. You even feel seen when she tells you that PCOS affects focus levels and gives rise to anger issues, making it difficult to adjust to the demands of the work environment.

But self-awareness is void without some much-needed hustle. Granted, you rarely get time to yourself, but when you take a moment to ponder just how much work your poor body is putting in, sympathy is sure to arise. Life is a series of institutes you cross over to, jobs you spring between, but PCOS is an inexorable child that refuses to leave your side.

You may not be equipped for parenthood. The feat might not even be in the cards for you. But this mentee is loyal to you, even if she may be nothing more than dead weight at times. So do allow yourself to be harsh, embrace those endless breakdowns, but treat her like you'd treat the inner child you believe you've lost to age and disease.

PCOS might not be the ideal replacement you imagined, but this journey is your hike to brave and yours alone. It will be tumultuous as all journeys are, but the exhilaration of the climb is worth every draining step. The destination might not earn you a star-spangled view. But it will be your glittering reminder that, at the end of it all, you survived of your own accord.

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