Don’t Pity Me, Pity My Situation

Joab Wako, a kidney transplant patient, is raising awareness about the reality of living with chronic conditions and the unfair way CKD patients are often treated. In particular, he describes the difficulties for a chronically ill patient to receive health insurance coverage in Kenya.

As a person living with chronic kidney disease, I am always dealing with some aspect of my illness, so much so, it becomes a big part of who I am. Before I was Joab, an engineer with a passion for cars, a drive for efficiency and focus to change the world. Post kidney transplant, I have been reduced to kidney disease buzzwords and misconceptions. No, I’m not an alcoholic and yes, both kidneys failed…Really. I was further puzzled by long-term pity. After the initial shock of finding out about my disease, I no longer felt horrible about the situation. I came to a point of acceptance, where I acknowledged that this condition is for the rest of my life. So, when friends and acquaintances feel pity and say “I’m so sorry” I’m not sure how to relate. I could relate the first couple of times, but every time we meet? I’d rather you don’t say it.

Instead, pity our situation.

In many of my conversations, people beam and thank God for their clean bill of health. Not that there is anything wrong with that, but to air it out at the point of finding out about my condition is insensitive. There is a thin happy/terrified fence that people tread on. We are happy when healthy; however, we all fall sick some time in our lives, and it is this moment that terrifies. Because of this reality, healthcare is meant to be an affordable safety net that catches everyone. So, when a healthy individual doesn’t seem the least bit concerned with healthcare, or how substandard services affect them, it makes me pity them. I realize that part of their perceived terror is brought about by their interaction with an inefficient healthcare system.

Picture a person staying at home because they are worried about how much the hospital bill will cost, or another person choosing between buying food or medicine; worse still the thousands of chronically ill patients who can’t afford reasonable insurance. Realize that once you are chronically ill, you become a liability to any insurance company. Insurance companies want healthy people, who get the flu once or twice a year, not a person like me who has monthly checkups, and expensive medication. When I went to renew my insurance, I found out that they will cover any other disease I get apart from kidney disease, hypertension, and diabetes.

What is the point of insurance then? Isn’t the whole concept to provide support to sick people?

 

Insurance should cover pre-existing conditions; this clause is crucial to us as chronic patients. So why aren’t we as chronic patients fighting for this? Well because most of us don’t have the energy to.

Chronically ill patients continue to work just as hard as everybody else, and spend a big chunk of their income (most times, more than the average family spends on rent), on a healthcare system that treats us like pests, insurance companies that cleverly use clauses to exclude us, and doctors who charge consultation fees every time we see them. This often leaves us broke and generally frustrated with healthcare systems.

Healthcare is like a bus. Some people have to ride the bus, others have a choice. When you find yourself forced to always use the bus, i.e you’re chronically ill or know someone who is, you know which seats are the worst, you know which conductor you don’t like, and you also know the people who regularly use the bus with you. I may not be able to change the fact that I’m on the bus, but I can lobby for better seats, more maintenance stops, and even air-conditioning. But these changes take people, and most times people on the bus can’t get up to help themselves. So, they may sit in buses that are below standard and are uncomfortable to ride. As long as people who have choices to ride the bus don’t care about the state of the bus, changes will be hard to come by. Unlike real buses, everyone must ride the healthcare bus at one point in their life.

You can read more from Joab on his website here.

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