What's this? A post about guilt?
WAIT! Don't leave yet! I'm not sending anybody on a guilt trip, although I would love to tell you all about my fabulously guilty adventures, if that's alright.
Guilt is part and parcel of being chronically ill, both for the ill person and their loved ones. I've been on both sides of it, and it isn't pretty. I had the first taste of it when I was around 7 or 8 years old. My grandfather had terminal cancer, and during cold and flu season, we were not allowed to visit due to the risk of making him even sicker. I did not fully comprehend why we couldn't see him, but I do remember feeling incredibly guilty. I remember how awful that felt: being so helpless and sad, and feeling like I had done something wrong (whatever that could have been at the tender age of 8). But that's the whole thing! Guilt is often an irrational, illogical feeling. This can be evidenced perfectly in the sick people themselves.
Now that I am the ill person, I've got my very own brand of guilt, and it makes even less sense than the case I just described. I feel guilty for leaving school because I know there are students with Dysautonomia who are able to stay. I feel guilty for being up at 3 AM, writing this when I need the sleep so I can get the house ready for a very special gentleman caller. I feel guilty that my friends and family have to see me so ill. I feel guilty that I can't pick up and go wherever I want, whenever I want with my friends. I feel guilty that you are reading this incoherent slop written by the crazy, sleep-deprived woman with nothing better to occupy her time at 3 in the morning. I even feel a slight guilty twinge at getting such an obscure, under-recognized, and highly-ridiculed disorder. Way to kick me when I'm down, universe! If I have to be sick, can I at least have something that people believe?? There is no better way to add insult to injury than for respected physicians to tell you that "POTS is not a real, physical illness" (see here for my dealings with that gem). I feel guilty for feeling guilty! I'M the sick one here, shouldn't that make me entitled to guilt-free days?
Oh, that's right. I completely forgot. Dysautonomia is the disease for over-achieving, Type-A individuals (studies have actually shown that people who get Dysautonomia tend to be high-achieving, Type-A personalities). Perhaps there is some truth in POTS/ Dysautonomia being a stress-related illness, what with prolonged elevated levels of stress-hormone and all. But just like heart disease, stroke, and other stress-related problems, it is a physical disorder which can be medically verified! I digress. For someone who has striven for excellence since the third grade, accomplished many outstanding achievements, and was in the top of her class (not trying to toot my own horn, just stating fact and making a point), there is no greater irony. I have always been challenge-oriented and extremely competitive. Now the challenges I take on include climbing the stairs without needing to stop and making it through the store without needing a wheelchair to finish what I came in for (no sir, I can't just leave or sit down to rest. I'm here to accomplish something and I will get it done, shoddy body be damned!). Some days getting out a complete and coherent sentence is a competition in and of itself. And I feel guilty because I can't do the things I used to. Guilty because it gets worse every year, and the treatments don't seem to be helping. Guilty because maybe I would get better if only I would listen to all the comments made by well-meaning yet ignorant people (no, I do not care to try your magical root tea made by your local wizard, nor do I care for crystals, small animal sacrifices, vegan diet, marathon running, or any other remedy that you claim will help. I'll consult my doctor on potential treatment plans, thanks). *Bangs head on wall repeatedly*
I am told constantly to "take it easy, do things at your own pace." Oh how I wish it were that easy. While I may be feeling guilty for not being as intelligent or athletic (HAHA! Erm) or exciting as I was just a few years ago, I will be indulging in a combination of chocolate, YouTube episodes of "Here Comes Honey Boo Boo," Pinterest, and copious amounts of coffee. I deserve to have some guilt-free time for myself, to not think about what is going wrong inside of me. I may or may not finish cleaning the house today, as my body decided to deprive me of Melatonin and desperately needed sleep. This post took me over 2 hours to write; I would love to see how house work would go. I'm sick, damn it! I don't need the guilt. And if conquering that emotion and eliminating stress is going to reduce me to one of those strange Type-B people, then so be it. Yes, I know. I laughed too.
Wishing you a stress- and guilt-free day,
Sydney :)
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