If I were a crow, I could leave my house and be perched on the dome of the United States Capitol in about 17 minutes (trust me, I’ve done the math on “as the crow flies”). But I’m not a crow. I’m a 72-year-old woman living in constant pain. My house is less than a mile from the District/Maryland line, but I haven’t visited DC or enjoyed its myriad museums and galleries, award-winning restaurants, and beautiful architecture for at least 15 years because I can’t stand or walk for more than a few minutes. My house sits between two lovely creeks, each bordered by a paved path under a canopy of majestic trees. Once or twice a month I walk along one of these paths, by myself, for about 20 minutes. Then I have to rush home to take a prescription painkiller before real agony sets in.

I have severe fibromyalgia and other nervous system disorders. It’s partly genetic. My integrative medicine doctor did a genetic screening a few years ago that identified a mutation in the MTHFR gene (laughingly referred to as just what it looks like), which some doctors believe is an indicator for fibromyalgia. I walked to school and back when I was in grade school, and many days I could barely limp home. Sometimes I would ask my teacher if I could go home early. When she asked me why, all I could say was, “My legs hurt.” No one ever suggested looking for an explanation for this pain, so unusual in one so young, but even if they had, none would have been forthcoming in the 1950s and ‘60s. It was chalked up as just one more unusual thing about my unusual self. On Sports Days I had special permission to hang out with the school lunch lady learning the proper way to chop celery. Talk about isolation!

The pain and stiffness in my muscles and joints increased over the years and spread to all parts of my body. I learned much later that this was quite possibly a result of serial emotional abuse inflicted first by damaged parents and later by an equally damaged husband. As explained to me by physicians who actually listened to me and took me seriously, living in constant high-alert, fight-or-flight mode switched on pain centers in my brain that now do not know how to turn off.

I also experience hyperalgesia (“unusually severe pain in situations where feeling pain is normal, but the pain is much more severe than it should be”; Cleveland Clinic) and allodynia (“pain due to a stimulus that does not normally provoke pain”; National Institutes of Health). I’ve sometimes thought half-seriously that I’d get a lot more understanding if I were confined to a wheelchair or wore a bulky brace of some sort. As it is, my general constitution is in remarkably good shape, but neurological problems don’t show on the outside. So I’ve gotten used to comments such as, “But you look so good!” That’s always nice to hear, but rather than try yet again to explain my condition, I just smile, pack up my weird medical secrets, and retreat to a safe place in my mind.

My chronic pain is accompanied by chronic fatigue. I still work full-time for the NIH as a writer and editor (thankfully, from home post-COVID) to maintain a home for myself and my adult son who is on the high-functioning end of the autism spectrum. Besides doing my paid work, I schlep around grocery stores, clean house, and provide my son with the high-octane mothering he still requires. I even, foolishly perhaps, do much of my own yard work on weekends, out of a deep-seated need for connection with nature. But I pay a high price in pain and painkillers, and am limited for the next week to interacting with the world through windows. Most days, I’m totally spent by 4 o’clock, barely able to drag myself around on aching legs and throbbing knees, literally staggering and ready to collapse into bed. This is how pain rules my life and isolates me from the world. After all, how many social events are over by 4 o’clock? What kinds of social events are even available to someone like me? The people I would want to associate with are ruled by entirely different body clocks.

My advice for lonely women in chronic pain is to do what I did: adopt a couple of young shelter cats. They’re marvelous company and highly entertaining. They don’t need to be walked, and they don’t ask awkward questions about why you can’t play with them this afternoon when “you look so good!”

Bonnie L. Casey is the author of Growing in Circles: My Struggle to Make Peace with God, Myself, and Just About Everything, available from Amazon.