I Have a Chronic Illness and I'm Angry About it.

A featured article from the new blog 'Chronically Patient', documenting the life and struggles of someone dealing with their chronic illness disagnosis.

Alex Martin

A hospital room, an ultrasound scan and five words would change my life forever; "she has Polycystic Ovarian Syndrome" (PcOS). After two years of regularly passing in and out of consciousness on my bathroom floor and countless hours of my head in the toilet all just from the pain of my period cramps, I was finally diagnosed at the ripe age of 14 with a disease that will never truly leave me.

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 nobody, not even the doctors that diagnosed and 'treated' me, ever took it seriously enough to consider it a real issue. Not even some of the people closest to me see it as anything more than "just bad period cramps" or "irregular periods" that can be 'fixed' with vegetables, exercise and gummy vitamins. While the first two assumptions are aspects of it, the nuances surrounding this condition are so under-researched and so over-ignored that even I, having carried this soul-destroying monster within me for nine years, only today, on Friday 14th March 2021, realised I have a chronic illness.

Finally. Something that makes it sound how it feels; chronic.

You see PcOS as 'irregular periods'; I feel it as the near-constant anxiety and real danger of the next excruciating period that knocks me unconscious, possibly in public and possibly for days, effecting any professional, social and personal life I have.

You see PcOS as me in bed crying from the 'bad cramps'; I feel it as a pain so strong, 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.

You see PcOS as 'trouble losing weight'; I feel it as having body dysmorphia since I was 12, a constant disconnect between how I think I look and how I actually do. I live 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.

You see PcOS as 'fertility difficulties', I live it as spending my teenage years debating whether the small chance of me maybe wanting biological children in the future is worth me not getting a hysterectomy, something that would give me the chance to live a more 'normal life' but disappoint my mum's hope for two sets of grandchildren in the process.

(And they're just some of only the physical symptoms).

Nine years, alone, questioning, constantly comparing the life I want to the life others want for me, the life society thinks I should have and the life I'll actually be able to live, all before the age of 21.

The label of "chronically ill" in itself has an odd kind of venom within it. Though the title may slightly ease the continual accusations of me "exaggerating" or even "faking how bad it really is", it also brings the hens home to roost. For almost a decade I've held on hope that it might, at some point, get better. The truth is however, that while the symptoms could become less severe, the damage is already done.

Nobody talks about the psychological, emotional and interpersonal scars this disease leaves you with because, well, nobody bothers. 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 my GP). While I am beyond grateful for our NHS and its workers, 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 get on with life.

At no point during my diagnosis or after had an adult, doctor or otherwise, sat me down and told me that I am chronically ill. 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, shaking and desperate to know what this 'thing' was.

The truth is, I still don't know.

I don't think I ever will.

Every time I think I know, every time I think I have it under control, the rug is not only swept out from underneath me, but I am rolled up in it and shoved into a furnace to burn while my life, the life I should be living, passes by me so completely unattainable that it's not even worth trying to get out of bed for anymore.

I have a chronic illness and I'm angry. I'm angry at my body. I'm angry at the the doctors. I'm angry at the people that still don't believe me. I'm angry at the people who never once thought to talk this thing through with me. I'm angry at the universe. I'm angry at science.

I'm angry at myself.

I'm angry that no matter how hard I try, no matter how many pills, surgeries or therapy sessions I have, I am always going to be angry.

Check out 'Chronically Patient' at: https://chronicallypatient.wixsite.com/blog