Okay, so here’s my thing: I realized while doing a writing assignment as part of a research project for a Vanderbilt student that I’m seriously ashamed of my chronic illnesses. Confessing that I have to cope with chronic illness or have to go to special lengths in terms of dietary needs, medicines, etc feels like sharing a dirty little secret. I’m not even sure WHY chronic illness is an issue worthy of embarrassment. Does it make sense to anyone else that we operate this way?
I shouldn’t feel embarrassed or weak because I cope with this. It’s like “unhealthy” even if it’s not your fault at all is the label that we want least. Yet some people who are sick, such as cancer survivors, are celebrated. Why shouldn’t we be celebrating ourselves for being able to handle chronic illness and trying to keep up with a life of “normalcy” while we’re at it? I mean, hot damn – I think being able to push through the fatigue, handle a heart rate that is regularly as high as other people’s exercising just because it can be, seeing spots but living life anyway are pretty big accomplishments.
I’m not necessarily “living life” to its fullest at the moment. I’ll admit that. I’m taking this semester off because I’m afraid of what would happen if I tried to handle school on top of all of my appointments. And I’m antsy about employment too although I’ve been trying to find a job. I actually have a few places that I’m going to go ahead and put applications in at – and hopefully they can adhere to the accommodations I may need in terms of needing a stool rather than being forced to stand for extended periods of time, etc. Because I WANT a job I WANT to feel like I can do something with my life and be a productive member of society. Right now living life for me entails running my parents’ errands (although I’m still at a loss as to why I’m the one that has to run the bills this afternoon when my mom was at BOTH PLACES I need to go now this morning while I was still trying to sleep – woo six hours!). Okay, it’s more than that. I’m trying to be an advocate as best as I can from home – I contacted my reps and asked them about funding for the NIH because if the NIH has more funding there’s a higher chance dysautonomia can be studied and we can make some breakthroughs that I’m pretty desperate for. (PS. You can TOTALLY tell the difference between a Republican and Democrat Rep based on the e-mail responses you get when you ask them for funding for something.) And I’m participating in the Vanderbilt Study – I’m actually signed up on ResearchMatch so that if I can be helpful in any way while I’m stuck taking time off because I can’t do much with my life right now I can. Other than participating in research projects, running errands, and sleeping? I blog and I exercise – sometimes through dance, other times at the gym. Sometimes I spend time with friends too – but I’ve been feeling a bit like a hermit lately. I went over a week without seeing my best friend and the two of us were shocked at how long it had been because we usually see each other more often.
But you know, I think that being able to do all of these things makes me pretty damn strong. I think that having the guts to look at my doctors and say, “The fatigue is getting to be too much and scaring me,” takes strength. I think it takes strength to want to fight against going on disability with every fiber of my being – and using that as the inspiration to talk to my doctors saying, “Something’s gotta give because I’m nervous about going back to school and ultimately teaching again if I’m so tired that tutoring for a day has me out of commission for DAYS.” I think I’m pretty strong for going against my best friend who absolutely insists that I’m simply going to make myself sicker by exercising when I have a stupid weather change cold and/or virus and not only running two miles on top of strength training yesterday but running those two miles a little faster than normal (even if I was pretty miserable and had to push myself to finish out).
So remind me when it actually takes strength to handle all of these things that I’m ASHAMED of my illnesses and feel as though they make me weak? Why does taking some time off to be responsible make me feel so weak?
Dear Zebras (and other CI patients): Let’s change that perception starting with ourselves, okay? Could we do that? I saw someone joke about how the POTS mascot should be a phoenix because we fall down but always get up again the way a phoenix always rises from the ashes. It’s a little accurate – I feel like we’re Fawkes from Harry Potter, strong as hell and connected to something that gives us more strength and an ability to keep going, and the grace and caring nature necessary to be there for others even when things are hard for us. Let’s go!