From time to time, I will blog about the experience of being married to someone who is chronically ill. Chronic illness shapes a relationship in some unexpected ways, and I feel that our feminist and egalitarian marriage is a big part of why our relationship is healthy when one of our bodies isn’t.

More on that later, though. For now, some backstory.

It took a long time for me to be comfortable say, “My husband is chronically ill.”

When we were first married in November of 2006, we had lots of hope and few diagnoses regarding Chalupa’s health. We knew he’d had a rough year, breathing-wise, and that his asthma had been acting up a lot. We did not know that over the next six years, he would:

  • never feel “good,”
  • take an average of one trip to the ER every six months,
  • see four pulmonologists,
  • go through a lengthy workers’ comp situation due to an unhealthy work environment,
  • spend about 60% of his free time in bed,
  • rack up an average of $10,000 in medical costs most years,
  • and get diagnosed with five different chronic conditions that affect his daily life.

Right now, our lives revolve around trying to recognize what is causing Chalupa to feel sick at any particular time and then respond to that thing appropriately. Sometimes, it’s a matter of getting him away from an allergen or irritant. Sometimes it’s a round of steroids to get him back on his feet after a cold that turns into a months-long ordeal. Sometimes it’s a trip to the ER for urgent care. Sometimes it’s staying in bed as much as possible for a week in hopes of staving off a worse infection.

For a while, it also meant a constant struggle to come up with the money to keep Chalupa healthy. Now that we are both working career-level jobs, and his insurance isn’t the worst insurance in the world, we only have to struggle to come up with enough money to cover medical costs in the first four or five months of the year. After that, Chalupa tends to start reaching out-of-pocket maximums, and costs drop down significantly. In previous years, though, we have had some scary nights of trying to get through an acute pulmonary situation without going to the emergency room because we couldn’t take on another one or two thousand dollars in medical bills just to have them pump him full of albuterol and take a bunch of chest scans.

Living with a partner who is chronically ill is an experience I didn’t anticipate. We only dated for a year before we were married, and that year was Chalupa’s last year of what we would call good health. If I believed in the myth of correlation equaling causation, I might be concerned that the root of all of his health problems is me!

The short of it is this: dealing with chronic illness is a complicated and emotional thing. It means that there is an uncertainty to life that can be unbearable if you’re not careful. It demands flexibility and willingness to change plans quickly and without getting to hung up on it. Chronic illness requires us to be more patient with each other and to recognize that few things are really within our control. Later I’ll share the ways that I think it makes us stronger as a team because we have to live by our own rules instead of the expectations people normally have for what a relationship looks like.

I would not go so far as to say that I am grateful for Chalupa’s chronic illness, but I am beginning to accept that it is a part of our lives and probably will be for the foreseeable future.