By Jay Hunter
One day, you wake up and will never be healthy again.
One day, you’ll learn the hard way how much people take their health for granted.
One day, you’ll have your last symptom- and pain-free day of your life but not know it.
For me, that day was half a lifetime ago. Literally.
I’m 34 now and have been chronically sick since I was 17 years old.
I have a form of inflammatory bowel disease – Crohn’s Disease as well as two other chronic illnesses: one rare (adrenal insufficiency) and one common (chronic migraine), among other health issues. But my particular illnesses don’t matter as the sentiment here is shared across all chronic and incurable diseases and the people who suffer through them.
We are called brave, but we question our will to fight another day every day.
We are told we will get better, but in truth, our lives only get more complicated as we learn how to cope with the pain and get better at hiding our symptoms from the outside world.
We become more defined by our chronic conditions the longer we have them. They become inseparable from our identities, and we forget what life was like before becoming sick.
We become experts in a healthcare system that often bankrupts and fails us.
We learn that other people are inherently selfish, as became painfully clear during the first years of the pandemic as people refused to get vaccinated or wear masks to protect us.
We learn to shrug off all the common tropes that we hear far too often, as people’s best attempts to understand and empathize with us.
“Get better soon!” “I won’t; I have a chronic and incurable disease.”
“You’re so strong!” “I’m not; I just don’t have any other choice.”
“You’re an inspiration!” “I’m not; I’m literally trying to survive the next day.”
“Have you tried…?” “I know you are trying to be helpful but trust us, we have tried or are trying anything to alleviate our symptoms.”
Frankly, a lot of us get by via today’s support groups, aka social media platforms & peer group chats.
Chronic illnesses are incredibly isolating, as people suffering with them often don’t interact with peers in a day-to-day physical manner. We are inherently different from our friends, family and colleagues, with that gap between us growing larger with every new symptom, flare up, hospitalization and missed milestone in life.
We learn to adapt and spend most of our resources on survival, while trying to navigate building lives, families, careers and social relationships if we are lucky; something that most people never have to even think about for a moment in their lifetimes.
We try our best to survive in a world that’s not designed for us and often harms us.
Being sick, disabled, having a chronic illness- whatever language you use, is universal whether you want to admit it or not. Everyone will die one day, some of us just get closer to it a lot sooner than others.
Despite what people may say, we all want to get better and try everything possible in our own ways to accomplish that illusive healthy life that we once had but is currently unattainable.
We don’t give up, but we aren’t inspirational or your “feel good” story.
We simply wake up and try to live the best we can for another day, just like everyone else.
It’s hard to explain how exhausting and tedious the chronic and incurable nature of our diseases are. Sisyphus would be a good metaphor if it wasn’t so abstract and pretentious.
Our conditions are something we have to live with for the rest of our lives which is unfathomable to someone who doesn’t have to deal with something so permanent on a day-to-day level. I have to infuse or inject a medicine that’s currently out-of-stock in the United States into my body every day or else I’ll die. That’s my daily reality.
There’s nothing voluntary that a healthy person has to do every day to avoid death: even dehydration or starvation take more than a day in a normal setting to become fatal.
So what’s the point? What’s the best way to help people like me?
Be kind.
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