Chronically Angry

A hospital room, an ultrasound scan, and five words would change my life forever; "she has Polycystic Ovarian Syndrome" (PCOS). Two years of regularly passing in and out of consciousness on my bathroom floor, countless hours of my head in the toilet, and my poor mum cradling me, trying to make it better, all because of the pain of my period cramps. I was finally diagnosed at the ripe age of 13 with a disease that will never truly leave me, and I fear I will never truly understand.

Since then, I have battled with not only myself but others too, to figure out exactly what that means for me and my life. The simple fact is that none of the medical professionals ever took it seriously enough to consider it a real issue. Not even some of the people who used to be closest to me ever saw it as anything more than "just bad period cramps" or "irregular periods". The nuances, causes, and treatments of this condition are so under-researched and so over-ignored that even I, having carried this monster within me for a decade, only today, on Friday 14th March 2021, realised I have a chronic illness.

The label of 'chronically ill' in itself has an odd feeling that comes with it. Though it is oddly validating and may slightly ease the constant accusations of me "exaggerating how bad it really is", it also brings the hens home to roost. For a decade I've held out hope that it might, at some point, go away. The truth is, however, that while the symptoms could become less severe, I will carry this thing inside me forever.

You hear me tell you that I have irregular periods, but I spend every day with a near-constant anxiety of the next excruciating cramp that knocks me unconscious, possibly in public, and leaves me recovering for days, affecting any professional, social, and personal life I have.

You hear that I've been in bed crying from the bad cramps, but I feel it as a pain so torturously severe that I pray the next wave either knocks me out or kills me entirely, just so I don't have to feel it anymore. A pain so strong that, similar to birth or many other traumas, my brain blocks it out afterwards almost completely to the point that after a while, I even gaslight myself into thinking "It surely can't be that bad" until the next cycle reminds me of how bad it really is.

You see me and think "wow, she's gained weight since school..." but I have spent every day since I was a young child suffering from body dysmorphia, a constant disconnect between how I think I look and how I actually do. I have lived it as varying severities of varying eating disorders over the years, sobbing over the bathroom scales because nothing I do will make that number go down and stay there. ,y body fights against me at every attempt to lose some, any, weight.

You perceive PCOS as nothing more than 'fertility difficulties'. I live it as spending my teenage and adult years debating whether the small chance of me maybe wanting biological children in the future (which is something I've never even wanted) is worth me not getting a hysterectomy, something that would give me the chance to live a more 'normal life' but potentially disappoint myself and partner if either of us ever come to regret it. That's if the medical system would even let me get one, which is a battle within itself.

You see me being lazy, I cry in frustration as I physically cannot drag myself out of bed some days because the chronic fatigue, depression and anxiety leave my body and brain unable to complete even simple everyday tasks, even when my other symptoms aren't that bad. I cannot get through a day at work or socialising with friends without feeling like my body is going to randomly shut down on me because I'm so exhausted all the time.

And those are just a few of the symptoms.

A decade of questioning, constantly comparing the life that I have to the life that I want, the lives others have, the life society thinks I should have, and the life I'll actually be able to live in the future, all before the age of 20.

Nobody talks about the psychological, emotional, and interpersonal scars this disease leaves you with because nobody bothers to know. It's a 'women's issue' something the NHS "won't properly treat [me] for until [I] decide to get pregnant" (a direct quotation from one of the many GPs I've seen over the years). While I am beyond grateful for our NHS, what I am not grateful for is the passive-aggressive sexism and patient blaming that happens within it. Instead of guiding me through an already difficult puberty, I was shoved on the contraceptive pill and told to lose weight and get on with life.

At no point during my diagnosis, or after, had a medical professional actually bothered to sit me down and tell me what this thing was. Every time I asked, I got mixed messages because none of them actually knew. The day of that ultrasound scan, I returned to school knowing nothing of the life sentence I had just been handed, other than what I read on Google during the 30-minute drive from the hospital. I spent hours in bed that night, terrified, crying, and desperate to know what I had and what to do about it.

I've spent years looking into this thing and how to treat it and while I do have a (kind of) solid grasp on what the latest research suggests, nobody actually knows the answers.

I have a chronic illness and I'm angry. I'm angry at my body. I'm angry at the doctors. I'm angry at the people that didn't believe me. I'm angry at the universe. I'm angry at science and the systemic sexism within the research and medical fields.

Mostly, I'm angry at myself.

I'm angry that it's taken me nearly a decade to accept that this thing is never going to leave me and to implement the changes in my life that would help. I am a long way from being okay mentally, physically, and emotionally with this, but I am making baby steps. I'm hoping those baby steps will eventually add up enough to where I find myself in a place less confusing and scary.

I am angry, but I am hopeful.