Yes, that is a Friends reference.
After I took part in the Ehlers-Danlos Society’s Awareness Challenge, I went pretty quiet for a couple months. The reason I wanted to use: “I needed to focus on my family.” In reality, I unconsciously shut down my ability to be vulnerable publicly. It’s almost as if my brain could only handle so much sharing and once I gave it a breather, it went into protection mode and shut the gates to Mordor. (Why Mordor? I think because of how many obstacles Frodo and Sam had to go through to get past the gates. That is what it feels like when I’m trying to share my struggles online. Though, usually with less lava and orcs. Unless you consider my inner guilt-demons as orcs, in which case just less lava.)
I have discussed my condition with coworkers and it still feels like an open wound. I felt embarrassed, and several times caught myself regretting being open about my condition. It is much more comfortable when I keep my crazy body issues to myself.
I was more open with my family; I cried with them when before I would cry alone. I talked to more family about it, answered questions, and took many satirical jabs as they tried to process. Watching people you love be unable to understand what you’re going through is extremely difficult. I felt like I should limp because that would give people the visual proof they were seeking.
The hardest part was not being able to play and wrestle with my nieces and nephew. “Fun” Aunt Amanda has now become “disabled” Aunt Amanda. Talk about a knife to the heart. I was able to explain it to my older nieces, but I didn’t have it in me to try to explain it to the littles. It was heartbreaking enough to do so with the others.
There are so many ups and downs with EDS and chronic pain. Some days are good, while others I am a wreck. It is hard to put yourself out there when you don’t know how your emotional state will handle whatever blowback you receive, just by being you. I blamed my lack of vulnerability on being tired, on being overwhelmed, on not knowing what to say, on not having enough experience, and on my Facebook account being hacked. Then I realized it was actually my fear.
Anxiety about making mistakes and receiving endless criticism shattered the confidence I had gained by being vulnerable. I started to question and see the negative in everything – my motivations included. I lost my intention, my focus, and my thoughtfulness. Being open in a world full of hate is not something I have overcome yet. Because of that, I lost my balance and reverted to anxiety driving my intention.
Then, despite the pain, I laid down a vinyl plank floor in our short bus.
I took a selfie (something I rarely do) laying on a cushion on the floor I had just completed, proud of what I had accomplished, trying to smile through excruciating pain. I instantly wanted to share it with other Zebras. That’s when I realized that fear was what was keeping me immobile. Fear created the feeling of inadequacy and being limited in life’s opportunities. Fear of situations that hadn’t even happened yet. Fear of measuring up to nothing while increasing my anxiety about doing anything.
“Get the fork out, Mordor guilt-orcs.”
It has taken me a little while to get back on my feet and embrace the uncomfortable, but here I am. I’m slowly finding myself again and putting the pieces back into place. It’s a struggle because fear is such a strong adversary. It is the devil’s best tool. I shall overcome, in some shape or form, and I’ll be getting a lot of bruises along the way.