Invisible Me, Sick Me, Here He Goes Again

Waking up one day with a diagnosis that means you will never, ever get better is a hard pill to swallow - the first of many, many pills to swallow. People with invisible illnesses live in a world where our lives are one of quiet desperation. Where we wear a smile to hide the 5 different “issues” going on that day. Sometimes we do such an amazing job of pretending that things are great that those around us don’t even believe we are sick.

Having been very, very sick the last 5 days, sicker than I have been in years, it has come to my attention that the vast majority of people care nothing about a sick person. Oh, I am sure they care for them once they are dead, of course, because that gives the good Southerners something to do: by being theatrical in the throes of grief and concern. Death changes the equation greatly and death is NOT what I am talking about here. I am talking about the sick but alive people around us.

Or maybe it’s not that people don’t care about sick people so much as they do not know how to interact with them. Maybe that is why cancer stories are so popular. Maybe that is why people with cancer get the visits, the meals, the company that other’s do not get. With the heroic cancer story, the protagonist is stricken down, they fight the valiant fight, and they all succumb in the end. The same pattern is repeated and the supporting actors around the hero know their role like clockwork, because the same roles have been played out over and over again. With any illness other than cancer, the roles are unclear, the direction more vague. I experienced this when my mom was dying as well; the big grey fog was everywhere because it was such a foreign experience.

Outside of “popular” diseases...oh you know, the one’s where walks are organized yearly, nobody really cares or understand about the well-being of sick people. (And don’t even get me started on HIV stigma; that is fodder for another blog entry). You can scream to the rafters that you are sick, alone, scared, and need a connection and yet all you get is silence (or crickets if it’s summertime). But unless someone can check-in on Facebook, or pose for a selfie (with an Instagram filter, of course), then the cries of the sick go ignored. Hell, unless you are a child dying of cancer, even then you barely garnish a hashtag and maybe a few reshares of their bald little heads.

Sadly, nobody wants to acknowledge the existence of a sick adult. Adults, sick or not, are expect to shoulder everything and anything and never ask for help. Being an adult means you are not supposed to expose a tiny shred of weakness to the world, because, like a dog showing its belly to an attacker, you might as well advertise that you are neutered and ripe for being taken advantage of. Adults have disdain for adults who show weakness, period. And that is if they even believe the sick person in the first place.

So what are you supposed to say or do to help? Anything that does not invalidate my reality is pretty much ok. Some things are such common sense it feels silly to even type them! See, watch this:

“How are you feeling?”
“Haven’t heard from you for a while, are you still sick?”
“How’s it going? Are you well enough to catch up?”
“No? Hey that’s tough. So what’s the latest?”
“Hang in there!”

Notice hitting someone up for money was not on the list. Now was there a request for thoughts and prayers. Nor was there someone pointing out how “God has a reason for everything” or “there are a million starving AIDS babies in Africa much worse than you are”. Don’t deflect our reality by giving pop-cultured advice. Don’t tell them to take vitamins, drink more water, get more rest, etc etc because if such advice was helpful or effective then none of us would ever suffer again. Those things are not wanted, appreciated, and are you sucking at being a good person.

Most days I keep it together, 360 days of the year. But this past 5 days scared me in a way that I have not felt since I was diagnosed with HIV. It scared me on a physical level, because being trapped at home alone on top of a long winding hill in a snowstorm with a fever of 102.6 is bad enough. My Kitty is big on being adorable but SUCKS at being Lassie, well, at least he kept me warm I guess. But then being terrified of dying that way and laying there realizing like 3...THREE….people thought enough to ask about you, that is another layer of sadness. At what point did my life become so small and pathetic that 3 people care if I live or die? I have yet to figure that part out. That is definitely a topic for my journal instead of my blog.