I have had kidney disease for 10 years now. The day before my 26th birthday (Feb. 13) will be the anniversary of that first biopsy that confirmed to the pathologist that I did in fact have focal segmental glumerulo sclerosis. If you've ever had a chronic illness, you'll know that after 10 years, some things just don't change.
You still ask why. You still wonder if it will be OK. You still wonder if it would be better if you just die. You wonder if anyone understands. You start to think people will never understand. You know most people close to you, don't understand.You know the proverbs and the quotes, and the sermons are true-- that the strongest steel has to pass through the hottest fire. You know that this will make you stronger, wiser, better in the long run. You wonder if you'll make it this time. You wonder if anyone cares. You believe no one cares. You force yourself to believe that you don't care if anyone cares. You pray. You get angry, with God and with yourself. You curse. You want to be surrounded by people. You want to be around no one. You want more friends. You want to be alone. You have to be alone. You are alone. You explain your disease to someone who asks. You lie, and say you're OK. You don't bother telling the truth anymore. You believe no one wants to hear the truth. You know no one wants to hear the truth. You laugh so hard sometimes you didn't think something could be so funny. You cry so hard, that you didn't know you could be so sad. You want someone to hug you. You want to just curl up in a ball and sleep forever. You want someone to understand. You want someone to be genuine. You want someone to call. You want real friends. You want none of those things. You want to disappear.
What I've learned about being sick: there is no way to escape the feeling that you are not completely alone; there is no easy way to communicate what you want or need; and there is no way that anyone will ever understand what you're going through. I've been going through this for a decade now. Nobody in my immediate family and none of my friends have a chronic illness. Nobody gets it. And, nobody probably, hopefully ever will.
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