Coexisting with your chronic illness

I know I have Lupus, yet I’m always a little bit surprised when I actually have Lupus. The latest case: I’m a graduate student attempting to work full-time and take classes full-time. I’m in my second week of a 10-week quarter, and I’ve realized that it’s not sustainable.

And now I’m super pissed off.

It should be no surprise to me that I can’t take 9 hours of coursework per week, which requires a minimum of 4 hours of additional work per week, and work full-time, without becoming completely worn out. That is way to goddamn much for someone with this disease.

And yet…I attempted it.

I mostly blame myself, because I’m impatient. It’s possible to finish this program in 5 years, and I’d like to, but that’s probably not feasible for me.

However, I also blame inspiration porn and this tendency society has to want to applaud whenever someone with some sort of limitations or hardship does more than other people think they should. It makes me feel like I need to push myself harder than someone like me can really tolerate, and makes me feel like a failure when I don’t.

I hate the “warrior” rhetoric I see in Lupus support circles. I’m not a warrior. I don’t want to be a warrior. I’m not fighting, because Lupus isn’t curable. It’s here to stay. There’s no winning and losing here; I’ve got this disease, and that’s that. Lupus causing problems doesn’t mean I’ve been defeated, it just means Lupus is causing problems. I prefer to say I’m managing Lupus. It’s a more neutral framework.

Truth is, on a day to day basis, I’m just trying to figure out how to live with this damn disease. I don’t see it as a battle, because I don’t like war rhetoric when it comes to disease or disabilities. I see it as an integration. Lupus and I need to coexist. There’s going to have to be some give and take.

Right now, I need to give up a class and take some of my free time back. I need to make sure I’m resting enough and not overdoing things, not adding stress or doing too much. I need to take care of myself, and do my best  not to cause a flare. Taking only one class means I have  more time to get the weekly workload done; I can take days off from working on my project if I need to.

Put it another way: Taking a full course load and working full time with Lupus may sound heroic, but I wouldn’t be setting myself up for success. Slowing down and doing less will actually help me manage and live with my Lupus more successfully, and make me a more successful student.

Sometimes less really is more.

That said, I don’t want to encourage people not to try, or to never push themselves or do something that others think you can’t do, but I will say this: When you have a chronic illness, or any sort of disability, it’s okay to accept your limitations rather than chafe against them.


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