It sounds crazy when I say it out loud, but there are people in this world who think that telling me they wish they could trade lives so they could stay home is some kind of compliment. But it’s not.
What it really is is a showing of the ignorance of what it’s like to live with an autoimmune disease and the romantic ideal they have developed. Hell, it’s a romantic ideal I have developed and often fall into funks when I can’t meet the expectation in real life.
The ideal in my head says that I will clean the house and take care of the dogs on a regular basis. And when I’m feeling great and can drive again, I will visit friends for coffee and short road trips to thrift stores. When I’m too tired or painful, I’ll lie in my bed or on the couch in my pajamas and crochet gifts for work on my blog or business.
The reality is painfully far from that. So far, the chasm so wide between, that it’s nearly laughable that anyone, including myself, would ever think anything else.
The reality is not trips to the coffee shop on my good days and crocheting gifts on my bad. Because my good days aren’t that great yet and my bad days are laughably harder than that.
The reality is that on a good day I can load and unload the dishwasher OR fold and swap laundry. A good day rarely consists of all of my self-care, my housework, my business work, and time for my pets care. A good day consists of three checkmarks on my two do list and, if I’m lucky, a shower. Most days, I have to choose between clean dishes or clothes OR that shower.
Each day that I spend at home is a day spent in a private prison. It is endless days of the same walls. It is weeks without leaving the house aside from taking my dog on short walk to poop in the morning. That means it is weeks that I can go without losing sight of my front door.
My life is a lifetime of never being able to rely on my own self. Not my health or pain or emotional state. It means never trusting myself. It means never knowing if I will be too tired to even read or if I will have the focus to follow the plot of a show (Spoiler Alert: I rarely do. It can take me hours to watch a show that is only 30 minutes because I have to constant rewind to remember what happened.) It means that even the act of vegging in front of the TV takes effort that I don’t always have.
I understand that implication of “working from home,” which is often that people are doing nothing and pretending to work while eating cereal and watching TV. They don’t do that, but that is what people think. So, the very idea that I barely “work” some weeks (even when I am truly working on my blog or business as much as I possibly can) some how denotes that I lounge at home on my bad days and the rest of my time is spent living a fantastic life of leisure filled with social events and Instagram.
The reality is that I rarely see humans that aren’t my doctors. I talk to my dogs more than anyone I know and I sit on my couch and wonder why I got out of bed at all. What makes the confining walls of my living room that much different than the suffocating walls of my bedroom?
The reality is that even I daydream of what I wish it were like to have an autoimmune disease and be housebound. I wishfully think of coffee dates and dog walks with friends and reading 100 books a year, because I do nothing but read and crochet and stitch when I can’t do much else. I, just as much as anyone else, have a romanticized ideal in my head of what being unable to work means.
But the reality is that I can’t leave my house and I feel as if I may be slowly going mad. The reality is that some days I’d kill to leave the house everyday and others I hope to never leave again because I no longer feel like I can assimilate into normal society.
The reality is that being home when it’s not by choice is slowly killing me. And it’s not something you should ever wish for. But believe me, I’d trade places with you in a heartbeat if I could too, but I wouldn’t wish this on anyone.