3 things well-meaning people don't get about life with chronic illness

This is a tricky topic because it kind of makes me look like a huge, ungrateful bitch. When you have a chronic illness—or more than one, because having one tends to cause more problems—you get more I hope you get better soon's, I'm so sorry you're sick's, and blank stares about diagnoses and medical specialists and treatment protocols than you know what to do with.

Sympathy has a shelf life. It gets exhausting. And the guilt you feel about being tired of people just trying to express their care compounds that. So why do I feel that way? And why do so many people with chronic illness that I talk to seem to feel the same?

Hint: it's not because we're all huge ungrateful bitches. (Some of us are, but that's not the point of this blog.)

1. I will have good days—but I will not get better.

The usual script for someone you know who has come down with something is "Get Well Soon." Chronic, per my good friend Merriam-Webster, means "always present or encountered." CVID (common variable immune deficiency) is chronic—treatable, but not curable. Lung disease is chronic—treatable, but not curable. Dysautonomia is chronic—treatable, but not curable.

When people tell me to get well soon, I know what they mean. But the autistic brain freeze still happens nearly every time I hear it, almost like I'm failing an assigned task: I will not ever be well by any meaningful definition of the term.

The bad days are a guarantee. Chronic illness is literally my ride or die (let me have my gallows humor, okay?).

And my good days? The days I work, attend meetings, go to yoga class, play with my dogs, take a hike, or grab dinner with friends? I'm grateful for them; don't get me wrong.

But those days still involve fighting a body that has been irreparably damaged by my lack of natural immune response, years of recurring infections that scarred and collapsed my lungs, and strain to my other organs from years of oxygen deprivation.

I'm okay with being the human equivalent of a 1997 Honda Accord with 290,000 miles, bald tires, and a transmission that could quit at any time (despite only being in my early 30s). I'm doing the best I can to keep this thing on the road with the proper fluids (thanks, plasma donors!) and regular maintenance check-ins with an array of specialists.

But sometimes I think other people have a harder time accepting that my condition is what it is than I do.

2. Every conversation is educational—and a lot are skeptical.

Maybe this one (the first part, anyway) isn't that bad. I love research and infodumping. Like many people with chronic illness, I am an expert in the things that are wrong with me. And I did used to actually teach. Nevertheless, trying to educate people about chronic illness can be difficult and time-consuming. The fear of not being taken seriously is also extremely real.

It isn't easy to know how to explain CVID to people in my life. On one hand, I want people to know that it's serious. As my immunologist said, "People do die of this. At the rate of your infections, there would be a point that you go into the hospital, and you don't come back out."

On the other hand, my general "fuck it, we ball" attitude tells me to keep things chill. No need to upset people's delicate anti-death sensibilities or leap to the worst possibility.

And on a mysterious, fucked-up third hand, there's the side of me that knows some people will conclude: "Oh great, a self-pitying hypochondriac"—and that makes me want to say nothing about it at all.

3. Chronic illness brands you as unreliable, lazy, unengaged, and antisocial. I hate it more than you do.

Not every chronic illness is the same. In my case, CVID means I get sick way more than most people. When that happens, it's not just a fleeting thing that I will get over. My body can't fight infections or build up immunity the way it should. The sickness is more severe, lasts longer, and exacerbates existing damage—usually to my lungs because I'm most prone to respiratory infections, and they're already so wrecked.

Knowing that I can hardly go a couple of weeks without getting sick makes planning my life, setting goals, spending time with people I love, and enjoying hobbies difficult. I have a yoga membership at Shine Yoga Studio (they're absolutely marvelous), but I hate that I have to miss my twice-a-week classes (Vinyasa and Restorative) as often as I attend them.

I would like to see my friends more: plan movie and game nights, do random weekend outings, or go to events for interests we share. But the chances of my symptoms holding off long enough to be able to endure things like that are slim. Eventually, people start to notice how often you have to back out of plans and stop asking you to do things.

I'm extremely lucky to work at BigPxl, which offers a flexible schedule with the option to work remotely if I need to. I love my job and my coworkers, and I'm grateful that they understand to the extent that they do.

But I'd be lying if I said a part of me isn't envious that other people can live and work and move and plan without having to think about their health every minute of every day.

I know that's a self-centered thing to say—everybody has struggles—but I can't imagine what would hold me back from accomplishing everything I wanted if I were healthy (other than systemic sociopolitical and economic barriers and the persistent threat of society's collapse, of course).

Speaking of work, the BigPxl holiday party was lit!

(Up until the point that I accidentally ripped my nose ring out, and the bleeding wouldn't stop for like an hour!)

Anyway. Enough bitching about chronic illness.

Sometimes I wish I could just grab people by the sides of their faces and hold our foreheads together and telepathically beam our experiences into each other's prefrontal cortexes until a sublime level of mutual understanding is achieved with no language, no miscommunication, no effort, no fear.

As far as my attempts at psychic expression can tell so far, that isn't possible. I don't really expect people to magically understand or relate to what I'm going through. That's just what it's like for all of us as individuals on different paths.

Chronic illness is going to be with me forever, but with the immunoglobulin replacement therapy, I should keep seeing improvement. I'm grateful to finally have a diagnosis. I'm grateful there's a treatment. And I'm grateful there are people in my life who are committed to being along for the ride...even if I sometimes get sick of being sick and come across as a huge, ungrateful bitch.