This is going to be a very vulnerable post for me, and not because I’m half naked and showing my face. This is the beginning of a photography series involving chronic illness.
In December of 2015 I was diagnosed with a genetic disorder called Ehlers Danlos Syndrome after a lifetime of health problems that never seemed connected. EDS is a collagen error in my genes meaning my collagen doesn’t form the way it’s meant to. Since collagen is the glue of the body, this means that almost everything can be affected. From Wikipedia, “Collagen provides structure and strength to connective tissue. A defect in collagen can weaken connective tissue in the skin, bones, blood vessels, and organs, resulting in the features of the disorder.” People with EDS often have chronic pain in their joints due to loose ligaments and weak muscles allowing those joints to frequently dislocate. Muscle spasms and nerve pain are also common. The pain involved with EDS is what this set of photos focuses on.
I experience chronic pain every day. I tend to keep it hidden because continually complaining about my pain will only make it harder to handle. It’s not something you can see so I know people, aka my family, have a hard time believing that it’s actually happening, especially when I push through my pain with a smile.
This set of photos is meant to help people visualize the pain I experience that they don’t get to see. It’s meant to bring an understanding that you can never know what someone may be experiencing that you can’t see.
The pink/red spots highlighted on my body are places where I experience pain regularly, most often all at the same time.
(Okay to reblog, please don’t remove the caption, 100% NOT for blogs with raunchy porn or fat fetish/feeder blogs)
thank you for sharing this. you’re brave and beautiful.
having an invisible disability is so frustrating. it’s easy to get mad at the people around me for inadvertently making my life harder, but even when they know intellectually that i have these problems – and even specifically what the problems are – they can’t SEE when i’m having a rough day, they can’t SEE when i’m having a flare-up. some days, if there’s an empty 12-pack box on the kitchen floor, i can easily pick it up and take it out to the recycling bin; some days, i can’t even step over it, and just nudging it aside with my foot makes me wince. it’s not my friends’ and family’s fault they don’t know when i’m hurting. i don’t want to guilt people for that. what i do want them to understand is that the fact my illness is invisible makes it even suckier.
i’ve taken to using my cane in public even when i’m not having a bad mobility day, because people see it and are a little bit more careful around me, so they’re less likely to do something that will give me a bad day. OP, if you don’t use a cane, you might consider starting, even if balance while walking isn’t an issue for you; people bump into you on the sidewalk a whole lot less, and don’t let their dogs jump on you. 😀
Holding the Bowl 