Chronic illness is no fun. If you're here, you already know that.

Iā€™m Julia, and I've been living with chronic illness for more than a decade. My doctors are fantastic, my husband is beyond supportive, my friends are helpful and delightful, and it is still a struggle to get through every single day. This site is here to share the rants, resources, reviews, and ruminations I've created in my time as an angry invalid.

Chronic Illness: A Spouse's Perspective

Chronic Illness: A Spouse's Perspective

The Angry Invalid and I have been married for lo, these seventeen years. And when I met her, she was a high-powered academic professional, working way too much, eating way too erratically, and sleeping far too seldom. She was busy all the time, and I figured that I would trail her plaintively into the sunset, delighting in the few moments I could catch her attention.

And then she got sick.

The story of her illness is hers to tell, and it's long, and, ultimately, about as familiarly dull to anyone with chronic illness as their own story is. But it's changed our relationship in some very surprising ways.

The first, and most obvious, difference is the amount of time we spend together. I have a job; it's a good job, maybe the last good job in America. And I don't need to work full-time, and so I don't. And I imagined that I'd be spending a lot of that downtime by myself, because my wife would be off traveling, or working, or having some sort of adventure. But because she can no longer work outside the home reliably, she and I are together a LOT. And we have, very conveniently, discovered that we adore each other's company even more than we expected when we got married. In her healthier moments, we've taken long car trips---on the order of a couple months, sometimes---all over this spectacularly beautiful country, and never for a moment gotten bored, or frustrated, or unhappy, or angry. It's glorious - but it's only been possible because she can't hold down a regular job. I sometimes feel selfish about enjoying it so much---it's the consequence of a genuine tragedy, and it's allowed me to avoid confronting my own very deep issues with loneliness.

Then there's our social life. The Angry Invalid commands intense loyalty - it's the first thing I noticed about her, as I watched her across a grassy park being greeted ferociously by her friends. But she hates scheduling things that she might have to cancel, and so the burden of getting us out of the house to see people has fallen, mostly, to me. This is not a role to which I am well suited - while I have intense friendships of my own, and I am deeply fond of most of her friends, my issue is that I've never enjoyed sticking my neck out and making my preferences known, presumably for fear that they'll be ignored, contradicted, or rejected. It's silly and childish, yet it's taken me years to shake this tendency. But if we want to see people, by now it's gonna be me who schedules it, and it's been very good for me to have to transcend these limitations.

But my biggest challenge has almost certainly been figuring out how to balance my need for control, and my concern over the Angry Invalid's health, with my own moods and with her somewhat alarming level of incompetence at caring for herself, at least in the beginning. Like many children of astonishingly self-absorbed people, the Angry Invalid has a tendency to devalue her own concerns, and getting her to take positive steps for herself---even something as simple as calling her doctor---was, for a very long time, a real struggle. And I had a really hard time with this---I couldn't fix her, and I couldn't shake my own misery over not being able to fix her, and I was furious at how her time was being stolen from her---like my own mother's time was stolen from her by her own health issues. So there was an embarrassing amount of browbeating---I'm not proud of this, and I credit my lovely wife for keeping me honest about what I was doing. Over time, I think I found a way to express my concern, and to steer her gently but firmly in a more proactive and self-valuing direction---but it was a lot of work, and it was difficult work, and I did not distinguish myself.

Things are better now. We've gotten off lucky, in the grand scheme of things. The Angry Invalid has a good number of very good days, and the summers are mostly good and the winters aren't nearly as bad as they used to be. She's found medical interventions that help, and she's stable and getting, slowly, a bit better. And we, as a pair, are a gift that I never thought I'd find or deserve. But it isn't the marriage, or life, I expected, not by a long shot. It's worse and more challenging in some ways---being sick sucks, and being married to someone who's sick is not a particularly enjoyable circus ride---but the ways in which it's been better are much, much better than I'd planned. I'm not recommending that anyone get sick in order to tap this particular vein; but it's a relief to be able to see it this way.

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