Chronic illnesses are laborious,
they are always demanding,
and just when you think you‘ve mastered them,
they get even more challenging.
In reality we are always dealing with some aspect of the chronic illness, so much so, it becomes a big part of who we are. You`re never keeping up enough. To keep up, you must spend time learning it, but as a result, a little section of the patient’s individuality is lost to the illness. Let me explain, before I was 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 really failed...Really.
I was further puzzled by long term pity. Let me elucidate, after the initial shock of finding out about my disease, I no longer felt horrible about the situation. In fact I see myself as able as the next person, without a transplant. I think it is mainly because when a person is chronically ill, we must come to a point of acceptance, where we acknowledge that this condition is for the rest of our lives, and if the condition puts you at a disadvantage, we must strive even harder for our life goals. So, when friends, and acquaintances feel pity and say the legendary “I’m so sorry” I’m not sure I can relate. I could relate the first couple times, but every time we meet? Beyond the physical breath of air expended, usually not much effort follows that statement; I’d rather you don’t say it. Spare me the pity and let me live in my world that doesn’t feature trite phrases that don’t impact my life in any meaningful way.
Instead, pity our situation.
Pity man’s over-dependence on good health. I can’t help but think how 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 a little insensitive. In fact there is a thin happy/terrified fence that people tread on. Because health is a valuable limited resource, people are happy when they are healthy; however, unfortunately, we all fall sick some time in our lives; and it is this moment that terrifies. Because of this reality, health-care is meant to be an affordable safety net that catches everyone, not just the chronically ill patients. So, when a healthy individual doesn’t seem the least bit concerned with health care, or how substandard services affect them, it makes me pity them. I pity them because I realize that part of their perceived terror is brought about by their views on an inefficient health-care system. More so because chronic illnesses affect people who were once healthy. If you are lucky enough to get to your twilight years before dealing with our bureaucratic medical system, when you do, it makes it a can of worms; most people give up not because of the disease, but because of the medical system and how much it costs.
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 and buying medicine; Worse still the thousands of chronically ill patients who can’t afford reasonable insurance covers. Realize that once you are chronically ill, you become a liability to any insurance company. Insurance companies want healthy people, who get a flu once or twice a year, not a person like me who has checkups, and expensive medication every month.
In fact, when I went to renew my insurance cover, I found out that they will cover any other disease I get apart from Kidney related issues, and that includes high blood pressure, and diabetes.
What is the point of insurance then?
Isn’t the whole concept to ensure that insurance provides support to sick people? It is at that point I realized the significance of Obama Care, and the pre-existing conditions clause. The idea an insurance should cover pre-existing conditions is crucial to chronically ill patients. So much so, it’s often a matter of life and death. So why aren’t we as chronically ill patients fighting for this? Well because most of us don’t have the energy to. This is a situation worth pitying.
Chronically ill patients continue to work just as hard as anybody else, and spend a big chunk of their income (most times, more than the average family spends on rent), on a health system that treats us like pests, insurance companies that cleverly use clauses to exclude us, and doctors who charge consultation fees for the twenty times we might see them that year. This often leaves them broke, and generally frustrated with a system that instead of being a hero, turned out to be a villain in disguise, ready to ruthlessly execute.
You see, I view health-care 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 sits, 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. The crucial fact about this analogy is, unlike real buses, everyone must ride the health-care bus at one point. And when your turn comes to ride it, will it be a nice comfortable bus, or a rundown, barely moving shell creeping steadily towards death?
Don’t Pity Me, Pity Our Situation