The Thoughts That Haunt Me When I Hear About a Person With Pulmonary Hypertension Dying

How do you process the fact that every, single person, who has the same disease as you, is dying?  Yes, sick or not, we’re all on borrowed time; but, when you’re diagnosed with a rare, incurable disease that has a shortened life expectancy, death is almost always on your mind.

When I was diagnosed with pulmonary hypertension (PH) almost, five years ago, I pretty much always had a “it is what it is” attitude. I got dealt a pretty terrible hand, but there was nothing I could do about it; so, I chose not to dwell or mope or stop living life. For the most part, I try to live my best life. I travel, I live in the moment, I spend time with my family. But sometimes hearing about deaths in the PH community affects me in a profound way and brings me to a dark place where I can only question and wonder and even wait for “my turn.” It’s hard to get a grasp on my brain to prevent it from sinking me even further into that darkness. It’s hard to come back to the positivity I once had. Eventually I do but only until the next death.

With such a small community in Canada, various social media support groups allow many PH patients like me to get to know one another. And even if you don’t know them, you might know of them or at least recognize their name. They become your family. So when you hear about someone with PH dying, the effect is profound. And when deaths seem to occur monthly, that can really throw you into the darkest tunnel where you really wonder if you’re going to be the next one.

It’s been a tough year. Deaths in the PH community seem to be increasing in frequency. But maybe it seems that way because no one is ever ready to hear about a death. This is where things become hard to process. Befriending other patients with the same disease as you is so valuable and important. They become the best support system you can possibly have because they’re the only ones who truly understand your disease. Yet, when someone dies, it becomes the most heartbreaking “price to pay” for becoming friends with them. With this disease, the sad reality is I know I’m going to die because, unless there’s a cure, it’s inevitable. What becomes worrisome is when these deaths happen unexpectedly. Those deaths usually happen because the person’s weakened heart just couldn’t take it anymore.   We all pretty much have weakened hearts —  so, is it just a matter of time for me? For the next person? These are the thoughts that haunt me, and others I’m sure. Maintaining hope and positivity can take its toll. Sometimes it wears you down, especially when the idea of death is slowly gnawing away in the back of your mind. It becomes a hopeless feeling when a member of our “family” dies because a little piece of us dies, too. But, then, we have to dig deep and regain that lost hope because, really, what else have we got?