When your partner* is chronically ill, you become an expert in the subtleties of their behavior. You become a scholar in the way they move and breathe and sleep. You get your PhD in Observation & Reaction. You know when to speak up to ask how he is, when to stay quiet, when to end the visit with friends early, when to say no, we’ll just stay home tonight, thanks. You know exactly what it means when there are grey smudges under his eyes, and you know the difference between a painful breath and a labored one, and you know when something he says doesn’t make sense that it’s oxygen deprivation.
When your partner is chronically ill, you notice things they don’t even notice, like the fact that he puts on a sweatshirt when he doesn’t feel great, and when he is sick, he puts up the hood. Or the way his body sleeps heavier when he’s sick, and he doesn’t roll over in the night when he’s sick, and it takes him longer to respond to his cell phone alarm at 6:30 in the morning.
When your partner is chronically ill, you understand that their habits are not innocuous. Those sunglasses are not just for protecting the eyes from the sun–they are for keeping the wind from blowing pollen and dust into the eyes and causing a reaction. That bag isn’t carried because he likes to keep his iPad nearby–it’s because it’s the perfect size for his nebulizer and plastic bag full of meds. Those Mountain Dews he downs are not because of addiction to the flavor–they’re for the benefits of caffeine as a brochodilator and as a way to counter the shakes that come from too many does of steroids.
When your partner is chronically ill, your plans are never set in stone. It’s not hard anymore to cancel or drastically change dinner plans, a holiday at a family member’s house, a vacation itinerary, birth plans, Sunday morning routines, evening walks around the block, cross-country moves, date nights.
When your partner is chronically ill, you grow accustomed to doing things on your own. When the church building causes an allergic reaction week after week, and you eventually decide that it’s best to just go by yourself, it’s really not that much of a problem. When it’s your brother-in-law’s birthday at a nearby Japanese steakhouse, you’re fine with sitting by yourself. When your employer asks if you want to go to India for two weeks and asks if your husband would make a good co-leader, you chuckle and say no, you’d rather not let him die from inhaling the smog of Kolkata, thanks, though.
When your partner is chronically ill, you learn to make decisions about trips to the hospital. Eventually, you let him decide not to go, and you realize it was a terrible decision, and that oxygen-deprived individuals shouldn’t make the call as to whether or not they go to the Emergency Room. You set rules like “if you cough up blood, you go to the hospital, no matter what.” Then you follow through on that rule, every time, without fail, even when it costs you too much money and even when the doctors always say, “We’re really glad you came in, but we can’t really find anything else that’s wrong. Here’s a course of steroids to get you through the next week…”
When your partner is chronically ill, you must focus your frustration at the illness and not at the individual. If you let yourself get angry at your partner, what’s the point? It’s not his fault. His lungs are not him. He is not his paralyzed diaphragm or his screwed up throat or is scarred pulmonary system. His illnesses determine what he can and cannot do, but they do not define him anymore than your health defines you.
*my partner is a man, and so I will be using
“he” for specific examples from this essay
Note: This content is being published while I am out of the country, so my involvement in the comments may be limited until I return.