I was in my last semester of uni, really excited to finish, enthusiastic about my impending travel plans and ready to start a new life chapter when diagnosed with an incurable and degenerative illness at 22.
At such a hopeful time, it came as a total shock. I had never heard of polycystic kidney disease (PKD) and I was repulsed by what I read. Instead of small fist-sized kidneys, mine are enormous and filled with pockets of fluid called cysts. As a result, I have hypertension and vitamin D deficiency.
During this time one question played on repeat in my mind:
“What will happen to me?”
After three ultrasounds, a chest x-ray, CT scan, MRI, blood tests and other jabs, new doctors and finally a visit to a specialist I felt like I’d been hacked by the adjustment bureau.
But I also couldn’t help to learn a few things when coming to terms with my disease:
- To let go of my idea of the future
When I was diagnosed, I had serious concerns about my future. I didn’t know what PKD was and knew no one else with it. My only source of knowledge was Google – and I used it!
I read about renal failure, transplants, dialysis, and a gruesome little irreversible fistula in the arm. I read that I was at increased risk of heart disease due to prolonged unmedicated hypertension.
The future looked pretty bleak.
I didn’t know what stage I was at with the disease or how quickly it would progress and felt like I was running out of time. Not even Google could answer all my questions.
So I talked.
Debriefing to my med student sister, mum, close friends and of course doctors, they reassured me that while PKD had no cure, it can be managed and I can live a normal life, especially since it was caught early.
Being organised is a good thing but this spanner in the works of my plans forced me to detach myself from the future and realise that the only real and important thing we have is the present moment.
- To accept myself as I am
While searching for answers and understanding I instead found isolation.
I believed I was a picture of health but one diagnosis had crushed the whole facade. I had to let go of the idea I had of myself and accept and love myself for who I now knew myself to be.
For years I endured the painful side effects of PKD without realising it was not normal and made excuses for these too. Sore legs, I put down to long standing hours as a waitress. Painful chest? Laughing too hard!
In a sense, the diagnosis taught me why I was the way I was and that diseases aren’t simply confined to organs but impact on your entire being.
I consider knowing myself to be very important, however new circumstances and relationships show us new facets of ourselves, good and bad.
Being told something about yourself from an outsider is also hard to take. However in a quest for acceptance and self-knowledge, we need to be open to facts and opinions of ourselves presented by others.
- Your life doesn’t have to be only about you
While there was an uncertainty attached to my new reality, the extent of its impact depended on my attitude, thoughts and choices.
To have a good life and relationships, I firmly believe that these do not have to revolve around me and my physical condition.
I learned that sharing my story allows others to feel they too can be open about and seek consolation for the suffering in their lives.
Having the good fortune to work with the poor, homeless and mentally and physically disabled I discovered there is no one person in this world untouched by hardship.
Charitable work is truly a life enriching experience. It taught me that having a sickness and suffering does not make me a victim, and I am yet to discover its purpose in my life.
SO… you don’t have to be diagnosed with a disease to experience hard realities. But hard realities can teach us about ourselves and how to appreciate life in the present moment. Our lives are full of possibilities, good and bad, and it should be shared.