I am having a hard time lately with my invisible illness. Maybe it is because I have just recently fully admitted to myself, that I am actually ill. I find myself more and more, wanting to explain myself to others, to try and convince them that I really am a different person than who my illness makes me. For some reason I am feeling slightly ashamed to have “let” my illness take control of my life the way that it has. But I did not let this happen at all. I am ill and this is what happens because of it.
When I am in pain, I don’t want to talk to people. I don’t want to have deep conversations that require my full attention. Because when I am in pain, nothing will ever have my full attention. My pain is a small child, constantly tugging at my clothes for attention. I don’t know if I am even capable of a coherent conversation half of the time.
There are days, more often than I’d like to admit, where my brain fog gets the best of me. My brain is drifting above me somewhere, lost in the clouds in the sky. I often mix up words in conversations. I will say “I don’t like honeydew either” and realize, it’s a complete lie. My brain mixed up a cantaloupe and a honeydew and now I am a liar. I tell stories that I SWEAR have happened, only to realize it was a dream. I am often confused during casual conversation, when I cannot keep up with the words being said around me. People take notice and ask me “…why are you so quiet?”
I cannot always hear correctly. I often ask people to repeat themselves, either because I physically did not hear what they were saying, or my brain hasn’t come down from the clouds yet and is incapable of comprehending speech at the time. I have coworkers who will just ignore the fact I asked them to repeat themselves and continue with the rest of the conversation, leaving my completely lost. There are clients who will come in and mumble, refuse to look at me so I can try to read their lips, and then stare at me like I should have understood them. Even in my group of friends, my very small “what?” goes unnoticed and I can no longer understand the topic we are talking about. And then there are people who get MAD they need to repeat themselves so often.
My eyes betray me everyday, showing me things that don’t exist, and not letting me see the things that do. In the car, I am suddenly given the responsibility to watch for the exit sign. It passes, as I am seeing doubles or triples of signs too blurry for me to read. I never saw the sign, and now I am the reason we are lost. I scream to the driver to stop our car from hitting the dog that isn’t in the middle of the road.
I am starting to add up all the little ways people are inconvenienced by my illness and I feel like I need to explain myself. I am not mean, I just didn’t hear you speak. I am not drunk, I am just extremely dizzy and about to fall over. I am not ignoring you, I just cannot see the thing you are trying to point out to me.
In the movie theater, a friend watches me almost fall into the man standing behind us. He asks what that was about and I stumble out some words. “My brain… I have neurological… sometimes my balance is… not good.” And even that is hard to do.
I experience the world in a completely different way than the people around me, and I feel like I have to apologize for it.