When I Hear 'Anyone Can Die at Any Moment' as Someone With a Fatal Illness


I’ve spoken previously about the day that I was diagnosed with pulmonary hypertension (PH). There are a few moments that stick out from that day that will probably stay engraved in my mind for eternity. When I was first diagnosed, the doctor promptly gave me a life expectancy. It couldn’t have come at a worse time. I was 25 and just starting my career after working less than ideal jobs since the age of 15. I was obviously devastated to hear that my life was ending during a time it felt like it was just beginning. It felt like someone crumpled up everything I worked so hard for and threw it in the trash.

As I started to cry my doctor said, “Any one of us could die at any time. I could die in a car accident.”

This was the first time I heard this expression, but sadly, it wasn’t the last time. As the days, weeks, months and even two years have dragged on, numerous people have told me that anyone could die at any point, that the future is promised to no one. While I am aware of everyone’s mortality, living with a fatal illness is a very different experience than the advice I have been given. I know the people who have said that “anyone could die at any moment” and “the future is promised to no one” are attempting to comfort me. However, these pieces of advice are often coming from a very privileged source. The doctors who have told me this are able to work full days and have a family. The people my age who have told me this are purchasing their first homes and traveling.

The advice that “the future is promised to no one” is often said in an attempt to equalize my situation with the rest of the population. Unfortunately, I am not like the majority of the population. I had about a one in a million chance of developing idiopathic pulmonary hypertension. Because the disease is considered rare, Canada does not have access to less invasive medications that have been available on the market for nearly a decade. Rare disease medications are also very expensive, meaning new medications are not always introduced in Canada, or are not approved for funding.

Pulmonary hypertension causes damage to the heart and lungs, eventually leading to organ failure and death. It is a progressive disease that leaves many people breathless and disabled. I am disabled because of pulmonary hypertension, and am oxygen-dependent for certain activities. I was on oxygen 24/7 for over a year after diagnosis. Knowing PH is progressive, and I might be that sick again, is very frightening.

While death is promised to us all, there is a difference between living with a fatal illness and living without one. Although I try my best to live in the moment, there is often a dark cloud hanging over me. I worry about what will happen to me. I worry about the slow progression of the disease leading to further disability and death. Life is filled with difficulties and tragedies. However, not everyone will understand the feeling of the dark cloud that living with pulmonary hypertension can put over your life. Healthy people who say “everybody dies” in an attempt to over-comfort are forgetting one of the scariest things about living with a fatal disease: the progression.

There are so many movies who have used this plot to write a love story. While I am very lucky to have someone who has stood by me through all of this, I know having a fatal illness is not a selling point. It can create a lot of chaos and complications. My life revolves around medication, doctor appointments, tests, restrictions, limitations, disability, and oxygen. I know not everyone is as lucky to have the kind of love I have in my life. Life-threatening diseases are scary and sometimes they chase people out of our lives.

I often feel like I am living a fine line between quality and quantity in my life because I choose to do what I can while I can still do it. While all of us will someday die, not all of us will have to live with the burden of having a fatal illness, especially as a young adult.

What’s the worst piece of advice someone has given you about living with pulmonary hypertension?

A version of this post initially appeared here on Pulmonary Hypertension News

Follow this journey on The PHight or Flight Project

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.

 

JOIN THE CONVERSATION

Related to Pulmonary Hypertension

Person walking in hallway with IV stand, blurred shot

When an Article Suggested 'It's Up to the Patient' to Raise Awareness

My friend, who also has a lung disease, recently shared an article about how wearing supplementary oxygen can help raise awareness for lung diseases. The page discussed how it was up to the patient to raise awareness for a disease like pulmonary hypertension (PH). It suggested when patients wear their oxygen, Congress will take note and want to [...]
Stressed Female Doctor

Why Doctors Shouldn't Give Up on Treating an Idiopathic Diagnosis

Serena. “What’s wrong with me?” This was a question I found myself asking only a couple of months before being diagnosed with pulmonary hypertension. Upon diagnosis an expiration date was stamped on my back like a carton of milk. I was officially diagnosed with stage 3-4 idiopathic pulmonary arterial hypertension (PH). The word “idiopathic” is [...]
Gordon downie on stage singing

How Gord Downie Helped Change the Way I Face My Illness

On May 24th Gord Downie and his doctor from Sunnybrook Hospital in Toronto confirmed he was diagnosed with terminal brain cancer. Their report stated that Downie had been dealing with the very serious disease privately since December 2015. Later that week, the Tragically Hip, a band that Downie has been performing with for over 20 [...]
Vacation concept: Pair of beach loungers on the deserted coast sea at sunrise.

6 Tips for Facing Early Retirement as a Chronically Ill Young Adult

In December of 2013 I was diagnosed with idiopathic pulmonary hypertension. Although my symptoms came on quite quickly, I was only diagnosed once I was in severe right-sided heart failure and required supplementary oxygen 24/7 a day. Months prior to my diagnosis I had finally started my first adult job after years of pushing tea [...]