(xposted to my own journal)
Can anyone direct me to personal narratives/stories/support sites/biographies/etc that talk about this issue: what it's like to be the spouse of someone who is chronically ill/disabled/incapacitated somehow?
Most of the stuff I've found addresses elderly people. The two people I'm writing about are middle-aged, and one is in perfect health. They are also both religious people/pillars of the community. The sick one is a very important person (though not president or anything like that), and has reasons not to reveal his growing debility to the greater public - although the cultural context is such that it might not get revealed *anyway* (the culture has a taboo against discussing/admitting illness). I'm wondering what kind of factors will be coming into play here; I imagine his spouse will feel very much alone, like she can't share her frustration/pain with anyone, and like she has two full-time jobs. At the same time, they live in a small, tight-knit community that they are leaders of, and I imagine people might come forward and quietly take over some of the work.
Nobody in my immediate family or circle of friends has been in this position, so I don't have the personal experience with it.