Invisible. Shrouded. Hidden. Veiled. Unseeable.
Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again...could be an injury.
When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why? I. Don't. Know.
Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?
So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly."
Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."
Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."
And, "Please don't make "Arrrr, matey" sounds when I have a patch over one eye. I have double vision, probably a severe headache from the double vision, and I'm exhausted. Unless I take the lead, I'm probably not in the mood for jokes."
I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."
And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"
We are out there. We are someone you know.
Ever wonder why the middle age man on the subway is always so grumpy? Maybe he's in chronic pain.
Ever think that the young woman who "can't control her child" on the train has an invisible illness that makes her so weak and tired it's truly a miracle she and her child are even ON the train?
We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.
And we don't want to be invisible anymore.