Living with chronic kidney disease means managing an illness that has become a significant part of my identity. Before, I was Joab: an engineer driven by a passion for cars and a goal to change the world.
Now, post-kidney transplant, I find myself reduced to kidney disease buzzwords and misconceptions.
No, I’m not an alcoholic, and yes, both kidneys failed. What’s harder to handle is the long-term pity I encounter.
After the initial shock of my diagnosis, I reached a place of acceptance. This condition is lifelong, and I’ve made peace with that. Yet, when friends or acquaintances constantly say, “I’m so sorry,” I struggle to relate. Once or twice, I understand—but every single time? Instead, I’d rather people direct their concern to the situation we face.
Too often, conversations turn insensitive. Someone may thank God for their health right after hearing about my condition. While gratitude for good health is fine, airing it at such moments feels dismissive. There’s a fragile line between celebrating health and ignoring the realities of illness. Everyone will face sickness at some point, and healthcare exists as a safety net to catch us all. However, when healthy individuals overlook the inefficiencies and inequities of the system, I find myself pitying ‘them’.
Consider this: someone avoids treatment because they can’t afford the hospital bill. Another must choose between buying food or medication. Then, there are countless chronically ill patients who can’t secure reasonable insurance. Once you’re chronically ill, you’re a liability to insurers who prefer covering those with occasional colds, not someone like me, with monthly check-ups and costly medications. When I tried to renew my insurance, I learned they’d cover anything ‘except’ my kidney disease, hypertension, or diabetes.
What’s the point of insurance if it excludes the very conditions, you need covered?
Insurance should include pre-existing conditions—it’s critical for chronic patients. But fighting for this is exhausting, and most of us don’t have the energy to take it on. Instead, we work as hard as everyone else and spend a significant portion of our income on healthcare systems that feel adversarial, insurance policies riddled with exclusions, and doctors who charge every time we visit.
The result? Many of us are financially drained and disillusioned.
Healthcare is like a bus. Some people ride it out of necessity; others have the luxury of choice. When you’re forced to ride the healthcare bus—whether because of chronic illness or a loved one’s condition—you become painfully aware of its flaws. You know the uncomfortable seats, the unhelpful conductors, and the other regular passengers.
I can’t change the fact that I’m on this bus, but I can advocate for improvements—better seats, more maintenance stops, even air-conditioning. However, meaningful change requires collective effort. Those with the privilege of stepping off the bus must care about the state it’s in.
After all, unlike a real bus, the healthcare system is one we’ll all rely on at some point in our lives.
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