My Life with Ehlers Danlos: The Diva Test
November 4, 2015
By Tiffany Early
I’m a diva. Well, more specifically, my body is a diva. I get it; I’ve accepted it. My body just demands more than most, and it’s okay. Seriously, my body couldn’t even acquire a normal disease/disorder. No, it wanted something rare; it wanted to be “special.” In a room of one hundred, my body is begging to be noticed. It isn’t because of my amazing physique; nope, I’m the one that’s falling apart. My body’s disorder is forever and always begging to be noticed- like a cranky toddler at church.
I have Ehlers-Danlos Syndrome (Hypermobility Type with classical crossover symptoms), so basically my body is making collagen that isn’t capable of doing its job of fortifying my body. As a result, my ligaments are too loose, and my joints spend as much time dislocated as they do… um… located.
My organs are a little too floppy- which comes with it’s own set of trouble. My blood doesn’t pump back up from my feet to my brain as well as it should. My digestion is strange at best. Basically, when walking down the street, normal people just walk. I’m trying to keep a hip or ankle from dislocating. It adds up to a sometimes frustrating and painful existence- one that I know the members of the rare disease community can understand completely.
Now, I didn’t tell you all this so you can pity me. We all have our own issues; I get that. I tell you about my rare disorder so you will understand that my symptoms and limitations sound strange to the healthy world. That’s one of the problems with being a part of the rare community- nobody gets it. It sounds ridiculous when a generally healthy looking adult says she can’t open a door for herself- or else her shoulder will dislocate. When I tell someone that I physically cannot open a twist top bottle, they look at me as though I just told them I’m raising singing unicorns. I get it; I’m a mess.
Because the requests I have to make seem so bizarre at times, I have developed a method to keep from feeling guilty over what I’m asking of others. I employ “The Diva Test.” Here’s how it works- If I am asking someone to do me a favor I ask myself, “Is Ehlers-Danlos Syndrome (EDS) being the diva here or am I?” If EDS is being the diva, then my body will not let me accomplish a task- at least not without pain or danger to myself or others. If EDS is being a diva, I try to forgive myself for whatever the request is, because I’m pretty much out of options. If I’m being a diva, it’s something I CAN do myself, but I would just prefer not to.
I realize this may seem obvious to the rest of the world, but it’s not always that simple in real life. In reality, when I feel terrible and everything is painful, it’s easy to just be a diva and make unnecessary demands. I don’t WANT to be that person, but I’m human; it happens. The Diva Test has allowed me to have less guilt in my relationships with my spouse, my family, and my friends. EDS will always be a jerk. It will always demand its own way, and sometimes it will completely squash my efforts for independence. When EDS is being a jerk, then I need help. I’m not being a diva- my illness is. It’s okay to say No to coaching that little league team when I know that my health is not in a place where I feel comfortable supervising children alone. (I mean, if I had a kid, I wouldn’t want to leave them alone with a woman who is trying to pop a hip back in. I would assume she’s a little distracted from the whole childcare scene.) It’s okay to ask my husband to go to the grocery store for me, because if I go there’s no possible way I’ll have the energy to cook the food once I get it home. Ultimately, the sometimes flaky and distracted person I can be when illness is at its worse is forgivable, because EDS is being a diva- not me.
The Diva Test has also helped me see when I am expecting too much of others. Granted that doesn’t keep me from texting my husband while he’s at work and requesting a grape slush when he comes home (even on days when I’m fully capable of getting it myself). It does, however, keep me from expecting that he will absolutely get it. It makes grateful for the things he does for me, regardless if it’s EDS being the diva or me.
I’m not necessarily saying that The Diva Test is necessary for all chronic illness patients. I’m sure there are members of our community that are totally capable of handling their illness and their relationships without having a collision of the two. For me, it gets complicated. I need a system to keep myself in check. Chronic illness happened, and it stinks- it really does. Fortunately, there are great people in my life that matter so much more than all that, and I don’t want to make their worlds’ revolve around me any more than necessary. So, it’s up to The Diva Test to keep us all sane around here.
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her nephew and niece, Hagan and Mia.
Tiffany manages her blog where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.
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