Being sick is overwhelming. You have to take off work to sit in these waiting rooms and offices. You lose money every minute that goes by that you aren’t working. You lose money every time you pay for your appointment and they say “I’m so sorry I couldn’t help more” and refer you to 3 other specialists who turn around and tell you the same thing.
You spend hours researching your bloodwork. Getting second opinions. Now you have to pay for parking. Now your visit. Now your medicine. Oops insurance only covered part of your MRI, please pay $400. Oops we forgot to run 2 tests on your bloodwork. Please come back and give us more blood, more money, and more of your time. I’ve had doctor’s switching out prescriptions like it was candy. Oh that didn’t work? Here try this. Oh, not that either? Here try this. I watched a woman puking in the bathroom at the hospital today and felt sorry for her. I sobbed in the stairwell while a nurse stopped to comfort me and people scrunched by uncomfortably, and I could tell they felt sorry for me.
I borrowed money so I could pay for my visits. I’m working as much as I can and it’s not enough. People with cancer and autoimmune disorders know this best of all. Somedays you are great. You look great. You feel great.
Other days you are struggling.
Unless you are 300lbs, older, and literally about to keel over, doctors dismiss your concerns. Or like today, they just plain aren’t sure what to do or honestly don’t have the time to devote to you in order to figure it out. And I just plain don’t have any more money or time to give them.
That’s a tiny glimpse of what it’s like being sick. Some of your friends fade away. New ones come along. People get tired of hearing about how you’re sick and honestly you get tired of talking about it.
We all have struggles.
So you get up and you work, or you write, or you go on stage and you laugh, about how your hair is falling out and you’re turning into Pat or how you think someone has a voodoo doll of you. And for a few moments when you’re with your friends after a show, and they’re making fun of you, or you’re making fun of them, you feel normal.
But that is just a glimpse.