I’m a very capable person, my parents even joke that I have responsibility stamped on my DNA. I couldn’t be irresponsible if I tried because I’d be too overcome by guilt. Which is why I hate that people see me as being less capable because I have a chronic illness. People see me as being unreliable instead of seeing that it’s my illness that is unreliable. And because I’m unreliable I’m also useless and not capable of accomplishing anything.
I’ve come to a place where I’ve realized that having a chronic illness does not diminish my self worth, but I struggle with the knowledge that everyone else thinks my illness diminishes who I am. I spent too many years feeling like I was broken because my body is broken, but I know now that I’m not my body. Subsequently, I hate when people assume I must be useless because I don’t fit into society’s neat boxes. Yes, I don’t work a regular job, but that doesn’t mean I sit around all day. Never mind that I have my own website and I do freelance writing for other sites, that’s not “real work” so it doesn’t count. Never mind I’m a talented planner and organizer. Never mind that I have a degree which qualifies me to do any number of things, I must sit at home all day doing nothing because I’m useless.
I very rarely cancel plans because of my chronic illness anymore. For the past year and a half the only reason I’ve cancelled anything or dropped any responsibility was because I had a kidney stone or a malfunctioning gall bladder. Each and every time I was racked with guilt and had to be reminded that no human being can be fully functional when they’re passing a 6mm kidney stone. And yet my unreliability because of those stones is seen as confirmation of my uselessness. Never mind that no healthy human being would be able to bear the pain of passing 15 kidney stones in year and a half.
My body has it’s own agenda, it’s true, but that doesn’t mean that I’m incompetent. How do I handle the unpredictability of my body? I’m still the same person that I’ve always been, I just have to plan my life better than most people. I have to map out activities on the calendar and make sure I don’t overlap too many things. I have to weigh which events are the most important and make priorities, but if I follow this procedure I am generally very reliable. Sometimes I have to put off responsibilities a day or two until I feel better, but I always manage to get things done. However, I can’t predict kidney stones or gall bladder surgeries because I’m not God. If I had that kind of power I wouldn’t be dealing with all this.
I think some people assume I’m not capable of doing anything because they are too afraid to talk to me about my health. To these people I want to say, just talk to me. You will not hurt my feelings or make me uncomfortable. I’m not afraid to say no if I can’t do something, but if you ask it’s your responsibility to listen. Don’t try to guilt me into something I say I can’t do. I know my limits and I need the boundaries I’ve set to be respected. Please remember that I’m not useless, incapable, inadequate, or broken just because I’m not like everybody else.