It's been a little while since I made a post. I've been having health problems (as always), there's a global pandemic, and also I moved into a new house and the basement kept flooding and also (surprise bonus stressor!) one of my pets had a medical emergency and it turns out he has both pancreatic and adrenal tumors.
I actually wrote an entire post a few weeks ago that was pretty cute - it was all about how having a chronic illness and trying to deal with regular problems, like your basement flooding or your pet needing to go the emergency vet, makes everything extra-difficult. There was a fun metaphor about how my shitty roommate (a personification of my chronic illnesses, for you uninitiated) keeps changing the difficulty setting of the "video game" of my life to "hard mode" on me, and there was a nice uplifting message at the end about how you get more experience points in hard mode. Or something like that. Fuckin'... I dunno. I kinda stopped caring about that post. Every time I sat down to illustrate it, I just couldn't do it and would go clean the bathrooms or cook a nice meal or just stare at the ceiling or whatever. Because George Floyd got murdered by the police. And then protests got met with even more police brutality. And in a time when people of color (especially black people) can't fucking safely exist in my country I feel like a fucking tool for making some friendly, uplifting, rose-fucking-tinted-glasses illustrated blog post about how carrying boxes out of my basement makes me limp for a little while. Astute readers would know from looking at my self-illustrations that I'm pretty goddamn white. Not only am I white, I'm blonde! And not fat! And most of the time, my disability is invisible! And, not to toot my own horn, I'm not bad to look at. I'm cisgender, well-educated, fluent in English, appropriately (though punk-ly) groomed and dressed, not poor, married to a super hot cis-male engineer, and on and on - basically, aside from having a body that is just trash and some trauma in my past, I've been dealt a decent hand and have a lot of privilege. However, like all the Cool White People (TM) feel the need to profess, I'd love to add: I'm not completely clueless about police brutality and systemic racism! I've got a sign that says "Be Anti-Racist and Value Black Lives" in front of my house. I've donated to bail funds. I've read books about racism. And yet... the privileged world I live in leaves me still clueless enough that, when watching the recent Last Week Tonight episode about police brutality, a quickly-mentioned statistic from a 2019 article in the journal "Proceedings of the National Academy of Sciences of the United States of America" profoundly surprised me: in the United States, "over the life course, about 1 in every 1,000 black men can expect to be killed by police." Fuck. Look, one of the main reasons I started this blog (other than my therapist telling me to) and why I'm so outspoken about having an invisible disability is because I want people to realize that invisible illness isn't that rare, and that people with disabilities are just regular people. I think that I am, for the most part, a likeable person that lots of middle and upper class privileged and powerful people find it easy to relate to. I want them to know that I'm great and likeable, and that I have a chronic illness, that I have a disability, that I have Ehlers-Danlos Syndrome and realize, on some level, that people with disabilities are all around them and should be given the benefit of the doubt. A lot of the time, people are curious and want to ask me questions about Ehlers-Danlos Syndrome, which I'm always happy to answer. One frequent question I get is, "how common is EDS?", so I've always got the statistic at the tip of my tongue: about 1 in every 5,000 people have EDS (if you include all the sub-types) according to the U.S. National Library of Medicine. Usually, people respond by saying that 1 in 5,000 isn't really that rare, and I agree with them! I certainly feel like people with Ehlers-Danlos Syndrome are everywhere - celebrities like Sia and Jameela Jamil have EDS, I've got loads of friends online with EDS, and after I started publishing this blog, I had people I already knew reach out to me and tell me they have EDS too! So, if EDS is everywhere and touches so many lives, and "everywhere" is this instance is 1 in 5,000 people, and 1 in 1,000 black men in America are likely to be killed by the police... holy shit. Holy Shit. Holy SHIT. Look, if you've ever read my blog and felt any compassion for me, I need you to take some of that compassion and funnel it towards black Americans. Because here's the thing - your compassion for me is wonderful, and I'm so grateful, and it makes my heart grow three sizes when someone tells me they're thinking about me, or praying for me, or were moved by my words - but I gotta be honest, besides making sure that I'm getting the help I need from my doctors/physical therapists/etc and that I have enough financial support to not work full-time, there's kinda fuck-all that anyone can do to help. But there are LOTS of things that can be done to change the systemic racism that is killing black people. Short of me not being born, there's nothing that currently exists that could have prevented my EDS. There are a lot of things that could have prevented George Floyd's death. I would like to see murder at the hands of the police be rarer than my "rare" disease.
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Hey folks - in honor of 2019 (a year that was, frankly, mostly shit for me) coming to a close, I thought I would share some cold, hard, chronic illness-related data analytics. That's right everybody, no cute comics or mushy, untrustworthy feelings here! We, as superior people who believe only in logic and facts and efficiency and data-driven decision making, prefer the things we read to be completely devoid of emotion or opinion. Truly, not only do we welcome the approaching robot overlords, we strive to become them. In all seriousness though, I understand that it can be difficult for people who are able-bodied to understand and quantify the impact of chronic illness. It is difficult to imagine the cost of chronic pain, nausea, exhaustion, fear, and needing to be near a toilet in case you have a sudden bout of explosive poops. Also there are jerk-people who discount subjective experiences and think everyone should "power through" (you know who you are). For that reason, I'm sharing very objective data here: counts of every health-related appointment and test I had done in 2019. Please think about the time and efficiency losses as you view the charts below. Without further ado, here are some infographics I put together to show the breakdown of appointments and tests I had done in 2019. Come with me on this magical fucking journey through the past year. Alright, well, obviously I do go to my social worker a bit. Medical check-ups are a close second though, and jeez, do those take a looooooooong time. As much as I sincerely love Saints Claudia and Lisa, if my body could just get its shit together and I could see them less frequently that'd be fucking fabulous. Obviously, medical professionals are super into taking my blood, which is not ideal because I am frightened of needles. Those 26 blood tests represent me suppressing an anxiety attack by whispering "Invictus" by William Ernest Henley 26 times. The imaging is zero fun as well, and also often included needles. Sometimes, they included ultrasound wands and/or (on one memorable occasion) some sort of cervix-opening-nightmare-crank being inserted into my privates. These also called for "Invictus" mutterings. Ok so, again, I see my social worker a lot. But beyond that - 8 is an upsetting number of times to have to go to the gynecologist in a year. Have you been to your sibling's home 8 times in the last year? How about your best friend's? Because let me tell you, I haven't, but maybe I'd have more time for socializing if I wasn't AT THE GYNECOLOGIST ALL THE GODDAMN TIME. Crap on a cracker, I could save a lot of time if I didn't have endometriosis. If you happen to be wondering about the high number of "other illness" tests, 3 of these were throat swabs/cultures for suspected strep (negative), a few were vitamin D tests (my vitamin D levels are always low even though I take 4000 units a day - I seem to have some absorption issue), and the rest were testing me for things I didn't end up having (like thyroid or liver problems). Thank you for accepting this quantifiable data into your information processor made of electricity and wet meat. Eventually your meat will be phased out because, as these charts have made evident, it is highly prone to malfunction. Beep boop. Fine print disclaimers about this data:
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Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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