Tobi Talks Video

Creation vs Chronic Illness

Reconciling living with a chronic illness and leading an active, adventurous, full life can be difficult. Like most people, I tend to post the highlights of my good days on social media, but that’s not the full story, is it? My last post talked about Impostor Syndrome and the fear of being dubbed as a fraud. Likely, a bit of that fear stems from the fact that the full story is rarely represented. Blogging is quickly becoming a great tool for me to round it out.

Self Portrait 7/23/17
First image of a new Self Portrait series, chronicling The Whole Story.

It’s the weekend. The first one in at least a month @kyledanley and I didn’t have prior commitments, and the last one in at least a month that we won’t. I woke up at 6:30am (which is incredibly early for me) feeling like I got hit by a Mac Truck. I have a chronic muscle connective tissue disorder called Ehlers-Danlos Syndrome, or EDS. Simply put, the tissue that holds most people’s joints in place is fibrous and malleable like chewing gum. Mine is unstructured and mushy, like mashed potatoes. My joins slip around, sublux and dislocate regularly, and the surrounding muscles tense up to overcompensate. It doesn’t stop there though, it affects all soft tissue – skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, etc. There’s not a part of my body, both inside and out that isn’t affected every day. The best way I have found to describe what it feels like living in my body is that I’m a human-shaped flesh bag that someone threw bones, muscles and guts into and hoped they’d stay where they’re supposed to; they often don’t, because there’s nothing keeping them in place. This morning when I woke up, my first sensation was the subluxation of both hips. Subluxation is the partial but incomplete dislocation of a joint, and with every step I have taken throughout the day I run the risk of one or both hips dislocating. Luckily one of them has slipped back in the socket (for now), the other is still precariously teetering.

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People with chronic illness refer to their energy levels as “spoons” Click to read more about the Spoon Theory.

Arguably the most difficult part of having EDS or other “Invisible Illnesses” is just that, they are invisible. Anyone looking at me today or any other day would have no idea am living at a pain level 8/10 and a fatigue level of 13/10. With the invisibility comes certain expectations and assumptions, and a lack of empathy for pain. When I say “my back hurts” or “I need a massage”, it means I have been dealing with 24/7 back spasms as a reaction to my discs and shoulder joints inability to stay put, not that I want a pampering day at the spa. I never want to minimize anyone else’s pain or suffering, but when an able bodied person has been standing for a few hours and complain about their feet hurting, it can be difficult not to get frustrated – my feet have been reconstructed with pins, rods, a bone graft, and severed/lengthened Achilles’ tendons just to keep me upright. I don’t know what “My feet don’t hurt” would even look like.

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This is what being out of ‘spoons’ looks like. 

Despite all this, I am not content with “resting up” or “laying low”. I want to be adventuring or creating or just living as much as humanly possible, especially now that we have a vlog. This weekend Kyle wanted to get out of the house and paint a mural, and while walking isn’t the easiest or most comfortable thing for me to do right now I knew I would regret it if I didn’t push myself to go out too. I am so glad I did! We stumbled upon a wild punk-rock brass-band party called Crash Detroit that I couldn’t even begin to describe (thank god we took video) and I got to hang out and film Kyle while he created a masterpiece.I took it easy while we were out and about (I have got to get comfortable bringing my cane out with me, but we’ll save that for another post) but having an experience and creating content was so much more fulfilling than staying home in bed would have been. It is a constant line – does self care mean getting all the sleep my body craves (I kid you not, I have slept 30 hours at once waking only to pee and eat) or does it mean satisfying the itch to get out into the world and live to the fullest, despite feeling like a clangy boned meat sack? I say the answer lies in naps, and luckily Kyle’s always down for that too.


Watch the adventure start to finish:


One comment

  1. I think you are amazing for making it a priority to get out and live, even when you don’t feel great. You are such a strong person. <3 <3 <3

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