What you didn’t know, was that you would spend the rest of your life trying to convince people that you are broken. Even as you wrestle with the daily mindfuck that is surviving with invisible conditions, people need you to prove your pain and symptoms. Your word isn’t enough. Descriptions of any detail will never be impactful enough. The fact that you attempt to live with and in spite of your struggles is enough of a signal that you are… fine. It gets worse if you dare to thrive or find moments of pleasure in the midst of pain.
“But you were laughing!” “I saw you at the park!” “You posted a photo of yourself looking pretty!” “There’s a complicated project that you are working on!” “Remember that you went on vacation?!”
In many minds, having a busted body means that you are broken in every way. You should not/cannot act “normal” at any time. All actions outside of laying comatose in bed with tears streaming down your perpetually anguished face are PROOF!!! of your deception. This ignorant way of thinking stings the most when it comes from your inner circle. We get use to the doubts and rude comments from outsiders. It comes with the territory of not having dramatically visible symptoms. But, when it’s a friend or family member who levels accusations of disbelief your way, it cuts a little deeper.
My first question is always, “why?” Why would I choose this as an identifying trait? Why would I place physical and mental limitations on myself? The answer usually gets caveated with a phrase along the lines of, “I’m not saying that I don’t believe you, but…” They don’t want to be perceived as rude or incredulous. They want you to explain your maladies in a way they can relate to and approve of whenever you fall into view. More often than not, the doubt and questions are asked through mediation. The poor friend or partner who does understand gets peppered with the explanation game. The unbeliever needs a filter to place over their interactions with you. Through that lens, maybe they can finally accept that you are an entire complicated person and not just a broken body. Maybe. If you explain it well enough.
I’ve written about this a few times before and I will likely continue touching on the terrible social treatment individuals with invisible and rare conditions face. I try to remember that those judgmental people have their own invisible pains and struggles. They don’t watch us in the dark hours of the morning crying and vomiting. There isn’t a partner in their bed who is unable to function for days at a time. No one in their house is dropping glasses and dislocating their knee walking up the stairs. They will likely never feel the crushing tsunami of fatigue and brain fog that holds us down. Instead, they see the between moments. The small breaths of relief and laughs that we count on to get us through the painful majority of our day.
This is just a little message of understanding for my fellow sufferers. A knowing wink between passersby as you exhaust yourself explaining why you deserve to live. I believe you, unequivocally. I’m here.