Things are relative. We are living in a world where even facts and ultimate truths are called into question. Those truths get messier the further down we go into the rabbit hole of examining perception and individual realities. One of my favorite punk lyrics goes, “That’s me inside your head”. Our complex human brains are dramatically influenced by self-talk. That voice inside your head that works for good and for bad. Invasive thoughts, imaginary conversations, perceived slights or compliments based on our interpretations of other people. We are living rich fantasy lives in our heads that we just assume everyone else is experiencing some related version of each day.
Something about living with an invisible chronic condition shreds the illusion that we are all running the same life program. When you have to constantly remind the people in your life that you are broken. When you adjust all the seconds of your life that are spent doing mundane things in the accessible ways that allow you to continue. When you work on maintaining a physical nature of happiness and attractiveness that isn’t too far from how you actually feel, but some days it’s still impossible. When a large part of the population verbalizes that they don’t care that their actions might truly hurt you. When you try so hard to keep up with tasks that appear to barely register any effort for others.
Last week, I dislocated my MCP thumb joint. Basically, it’s where the thumb meets the hand. Having Ehler’s Danlos Syndrome, subluxations and dislocations aren’t rare. Knowing about my condition, I do make an effort to mitigate those issues, but I don’t always succeed. Like all dislocations, it was painful. It was visible and accompanied by the familiar burning ache. Luckily, I was able to slide the joint back on my own (not recommended). I now have a thumb brace and am doing physical therapy exercises to tighten the muscles around the joint. Somehow, it seems so small, so stupid, to focus my energy on this singular phalanx. The injury and pain are real. My acceptance of another injury is not.
My doctor reminded me that EDS patients have a higher risk of multiple dislocations of the same joint. As soon as he said that sentence, my brain pulled up an image of a spreadsheet with a list of all my ongoing symptoms. How can I have so many medical problems and still be a human being who presents as “normal”? How can people not see, not know, that my body is in a constant state of disrepair? I am all alone in this chaos. Swallowing my pain and sweeping my oddities aside as I move through each day. I feel angry, resentful about the fully functioning bodies of those around me. I shouldn’t. I know better than that.
The special power we sufferers have to see through “normal”, sometimes it clouds human connections. Empathizing with people we don’t know, that is what opens up the reality that EVERYONE is living in a flawed body. A friend of mine recently had a major surgery. My partner has physical weak points that flare up often. My family members have their own maladies. Chatting up the local grocer revealed that they have an invisible medical condition. Logging onto any internet health forum, there are hundreds of people commenting on their own broken bodies. Of course, there are hundreds of thousands more that aren’t even vocalizing their physical problems and pains. I stopped feeling sorry for myself.
That little ego check is what I needed. Sure, I’m allowed to feel my own frustrations, flares, and new symptoms. However, I need to process them better. My problems don’t make me special. Loosing track of how fragile each of us are and assuming anything about the physical health of whoever is siting next to me on a plane or train… that is selfish and irresponsible. Who am I to decide that they are living with a better blood and organ container than myself? Sometimes you have to get out of your own head and take stock of just how small you are in the scheme of humanity.
Always Bent Sometimes Broken 