I have had to explain to people (friends, family) what Hypermobile Ehler-Danlos Syndrome (hEDS) is since receiving this diagnosis from a geneticist earlier in July. I mean, it's a lot of syllables. I am having a hard time succinctly pulling together what it means to have this connective tissue disorder (truth is, I still am not 100% certain I fully understand what connective tissue IS), which has a multi-system impact. What I can explain is this:
This diagnosis is not something new. This diagnosis EXPLAINS what has always been there, literally since birth. It takes all these seemingly disparate data points and pulls them together into Ahhhh, this is what's going on!
Having a diagnosis puts a name to all the weirdness of my body. And then allows me to find support and figure out what is going to help me deal with this.
The last time I got a diagnosis that made everything make sense was ADHD. It is another set of letters that explain what's hard for me, what's uncomfortable for me, and some things that are actually awesome that come from the same thing. Part of the relief of that diagnosis was discovering that things that made me "weird" and awkward and things that I (or others) saw as personality flaws were actually due to a difference in how my brain is wired. It has been game-changing to tweak things and figure out what works for me to pay attention to stuff, to let people know I need time to process before I can respond and so when I incessantly say "what?" and then get mad because it's not that I didn't hear you, it's that I needed a hot minute to let it sink in. Communicating what I need or why I do certain things works surprisingly well at work and at home and the places in between. Finding tools that work for me for organization (okay, continuously trying different things and SOMETIMES landing on something that works for a longer term) helps me to not be a hot mess. I still take responsibility for shitty things I do that are related to ADHD (I am absolutely INCAPABLE of guesstimating how long it takes to get out of the house) -- it's not a get out of jail free card. I'm still working on how to get to things NOT ten minutes late. I'm actually working on a lot. But, having ADHD and people who are trained to help me figure it out and compensate for those weaknesses also means that I'm always learning new tricks and trying new things. For instance, I'm not ordering my big, beautiful school planner with all the pretty pictures on the cover and all the lovely color coded tabs. It did not work. It was a giant, pretty paperweight. I started okay, but it didn't stick. So I got a simpler one that was way cheaper and I'm going to try to make this an actual habit I stick to. Fingers crossed.
The other diagnosis that explained all the things (and made me a bit mad) was PCOS (now PMOS). I had a doctor when I was in my early twenties say he suspected that I had it, but then was like "you don't have x and x" and then got mad when he realized I shave my bellybutton (extra hair) but didn't consider that was a data point and then offered up the immensely helpful "Some women just have pain." Ew. But PCOS definitely explained why my periods sucked from the start and why "charting my cycle" to hopefully avoid bloody underpants was futile and not a personal failing. (Although it's amazing how the executive functioning piece of ADHD worms its way into lots of areas...) You can chart all you want, but when it's every few months that makes it way less predictable. I am still annoyed that nobody seems to give a shit, medically, about that diagnosis now that I am not reproductively viable in any way. Because it also impacts different systems, not just reproductive. Grrr.
Huh, the adenomyosis was also interesting... explained so much pain during those horrible periods and also was a painful, postmortem reflection that I likely was not going to be able to carry anyway. (Fun-not-fun fact: hEDS has comorbidity with infertility, especially endometriosis and adenomyosis. Yay!)
Explanations are helpful. They are helpful for understanding what impacts you medically in your body and brain. It gives you a thing to research and learn more about how your body works (or doesn't). Thank you, ADHD, for giving me hyperfocus to really dive deep (and deeeeep) into things I want to research. I am listening to podcasts (Bendy Bodies is a great one), and watching videos, and reading articles online. I now know that lying on the floor (or a table), which is something I do at the end of the day at school (and sometimes earlier if it's a particularly rough day) has been a way that I deal with overwhelm, but it's also what's called a "gravity break" for hEDS. It helps make everything feel so much less HEAVY. My body hurts at the end of the day. Lying flat is delightful. It explains why even washing dishes makes my back and neck hurt. And why I often go lie on the floor after.
Anyway, didn't mean for this to be a medical history, more that having a diagnosis is helpful when there's stuff that's not working the way it should. Having a diagnosis makes you feel less crazy for having complaints all the time. NOT having a diagnosis but knowing something isn't right is insanely frustrating. And of course, some diagnoses are ones that come with many more complications and difficult decisions.
For me at least, I feel a tremendous relief when I know what I'm dealing with.
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