“Used To It”

Fifteen minutes. That’s how fast the delivery driver got me my medicine. The house is quiet. I’m alone, sitting on my bed, switching between eating gummy bears and popping each pill out of the aluminum sheets.

A couple years ago when I was in the U.S., I remember trying to pick up this prescription. I was in a drive-thru. I handed over my discount card for the medication, and the pharmacist told me it would be $400. I was so broke at the time. I asked if there was any other way to lower the cost, and he said $400 was already the discount. I told him I couldn’t afford it and drove into a parking spot in one of the richest neighborhoods in San Antonio and cried. I cried for myself. I cried for all the others.

My condition isn’t life-threatening, but it is life-altering. The medication helps make some days less terrible. The flares I get are extremely uncomfortable, I’m constantly exhausted, and it’s all so predictably unpredictable. There are more good days than bad but even good days aren’t great. I miss out on so much. This week, I missed an entire family visit from Jonathan’s brother. They had a big party for him, and I couldn’t go. When he got back I asked if the family missed me and he told me they were “used to it”, that the same thing had happened last time. I wanted to argue and defend myself but I knew I couldn’t, because it was just the truth and arguing against the truth is like trying to breath under water. Fucking useless.

I hate hearing those words, “used to it.” I don’t want to be “used to it,” even though maybe I should be. The guilt I carry for not being able to show up hurts and I am in no position for more pain. It’s especially hard here in Mexico, where everyone shows up for everything. They might be late as shit, but they show up. It’s easier to get away with this in a country addicted to separation, like the U.S. Here, I find myself constantly comparing my health to others, thinking things like, “I bet they would still show up even if they felt like me.” There, you could be dead on a subway for hours before anyone notices.

Every time I say ‘I’m sorry, I can’t,’ the guilt tightens. It’s hard to give yourself grace while also hyper-policing yourself, making sure you don’t take this on as an identity. Why would I, who would want this identity? I’ve known people with autoimmune conditions who use it as a weapon to excuse their shitty manners and failed relationships. Perhaps they have just given in and stopped caring, while I still sit here fighting myself and denying something that everyone else is already “used to” except for me. I tell myself I’m not like them but then there’s the whole breathing under water thing again.

It’s impossible to explain to people what it’s like to have some unexplainable immune issue that keeps you in bed, bored, watching the world keep moving without you. Sometimes I wonder how long I’ll keep a husband before he realizes he deserves someone with the same energy to enjoy life with. Wondering when the “used to it” will shift to “I can’t do this.”

Pero ni modo. For now, I’ll keep popping out these pills and sticking them into another container for easier access. At least they’re $30 here in Mexico, and I can afford them.