Diagnosis & Death
Dodging curveballs and facing death head-on.
A month ago in December 2022, I was in one of my favourite cities in the entire world. Edinburgh. Magical, mystical and somewhat mythical.
It was a few days before Christmas, and although it hadn’t felt very Christmassy leading up to the festive period, it felt magical now in Edinburgh like everything had fallen into place. I often picture myself living there.
The Christmas markets had come back to life post Covid, though they felt less elaborate compared to when I was there in 2019, the food was still just as good and the atmosphere was still haunting and electric. I loved it there.
Just a few months before this, I had taken on a new role at work which made me feel a lot more stressed, in a good way I suppose, but it had also meant that my body had started feeling quite foreign to me, or perhaps I was a foreigner in my own body.
It’s funny isn’t it, as an immigrant, I never fully felt like I belonged in this country yet when I go back home I’m too westernized to belong there, the only place that ever felt like home was my own body, the safehouse for my thoughts and feelings and everything in between. However, about a decade ago it started to feel a little less like home and I often felt too lost to understand why I was feeling the way I was. It always felt like maybe I was losing my mind, and the flippant comments people made about how lazy I was or how I needed to take my vitamins when I expressed my chronic fatigue just added to the fuel of confusion.
Back when I was 18 or 19, I first started suspecting that something was awry with my body. I remember researching my symptoms and being so sure I knew what it was. I went to the doctors, the blood test came back negative, but the symptoms were still there so I insisted on a treatment that my doctor agreed to, whether or not that was the right thing in the long run, I’m not sure.
I digress, my new role at work and the stress that came with it led my body to feel like it wasn’t my own again, so I did the responsible thing and went to the doctor. This time, things were a little different to when I went to the doctors when I was 18, the doctor booked me in for several tests, not just a blood test, which already felt promising. So, as I woke up a few days before Christmas in Edinburgh, I got a phone call from a doctor I’d never spoken to before in my life to discuss my test results.
Once again, he told me what the doctor had told me 13 years ago, my blood tests were normal.
However, the pivotal test seemed to provide evidence that not everything is quite normal and of course, the symptoms that I first went to see the doctor about 13 years ago were still very much present.
The diagnosis rolled off his tongue in a very haphazard, roundabout kind of way; “so yes, based on your symptoms and the test results, it seems that you have PCOS symptoms, but because your blood test is normal I don’t think you have PCOS. Do you know what PCOS, Polycystic Ovarian Syndrome is?”
Of course I knew.
I knew back when I was 18, when my blood test results seemed normal to the doctors.
I knew when I constantly felt tired.
I knew when my cravings were unexplainable.
I knew when I told the doctor to put me on the pill to regulate my periods.
Of course, I freaking knew.
How infuriating that even after 13 years, the diagnosis was still not conclusive. He said he needed to speak to his consultants about something further, and after leaving me hanging for 3 hours, he finally got back to me, with the same spiel.
“The symptoms are indicative of PCOS but it doesn’t necessarily mean you have PCOS”
Then weeks later, I get another text from the doctor’s surgery to book an appointment to discuss my results.
Now what?
Thankfully, it was a female doctor who seemed to be a little more competent than her counterpart that imparted his chaotic diagnosis a few weeks back.
Her voice was reassuring, calm, firm.
“So while your blood test results are normal, you have two of the three clinical markers that qualify you as having PCOS”.
13 years later, finally a conclusive diagnosis.
I’m sure I’m not the first woman to feel let down by the system and heaven knows that I won’t be the last.
It does make me sad though that we are told to trust the medical systems but it doesn’t really cater for women as well as it should or as holistically as it should, although that can be said of modern medicine in general. It’s great at being reactive but I guess it doesn’t necessarily benefit from being proactive in helping patients. My body knew better than the blood test results or the doctors and it was trying to tell me all these years.
Suddenly, people’s flippant comments started to make sense and I felt less crazy.
It made sense, and that is somewhat of a relief.
It’s so hard to explain to people something you don’t even fully understand yourself, but feelings never lie, I was just struggling to justify why I was still tired after having 10 hours of sleep when the truth is why should we ever have to justify anything? Feelings are valid even when the means of articulating them might not be present.
The irony of this all is, last year around October/November time, I had decided that 2023 would be my year of wellness. Without a doubt, everything took a while to process, especially emotionally and I decided with undertones of bitterness that 2023 would still be my year of wellness.
My little pity party ended two days ago, when I was listening to a podcast about a woman who has been diagnosed with brain cancer and will probably be dead in a few months.
I don’t beat around the bush, because neither did she, in fact the reason she started this podcast was to say everything she wanted to say before she was gone.
In everything she has said so far, she has made a choice to remain positive and to spread a positive message despite what seems like an unfair diagnosis to everyone else.
All time is borrowed time and what we do with it and how we impact others is all that matters. That, and the connections we make with people. We know this from the resounding research that came back from the Blue Zones studies – connections and purpose are the two things in tandem with diet that led to these zones having the most people who lived past the age of 100 (in good health).
So, while my personal health journey was not on my agenda to share on the internet on a cold winter Monday, I think perhaps it can be helpful to others who might feel alone or lost in their own journeys, whether it be mental health or physical health.
I also feel that perhaps when faced with certain death, it can be easier to make the most of the very limited time you have whereas, sometimes living with an incurable chronic condition that requires constant maintenance to alleviate symptoms is a longer, more tiring battle to fight, which is why having a community to share the burden can be helpful.