There are side effects of long illness. Isolation is one of them.
I was lucky, relative to other folk with chronic illness, in many ways. I was lucky to not have a partner who would -- or would not -- struggle with this burden. Some few may be lucky to have partners who walk beside them, but from my reading it seems they are few indeed. With all the adaptations this illness required, negotiating through it with another person was a complication I am happy to be without.
When I was well, friendships were grown around activities. Friends and I did things together: auctions, concerts, plays, farmers’ markets, art fairs, antique shops, lectures, lunch, dinner, breakfast … and, of course, work. When all that falls away, it’s no surprise that friends fall away, too.
Or perhaps I fell away. Those first years I was not only fatigued; I was enraged.
Many tried. I tried, too, through the fatigue and frustration.
Friends may also have stepped away due to my own rage and resentment. I was cranky. Not just from pain, but from powerlessness. A workaholic deprived of work; a swimming addict denied the pool -- I was not in a good mood. I was not a graceful patient. I know that some of you were. I don’t know how.
That, at least, is better now. Have I adapted, accepted, or merely given in? I’m not sure, but whatever it is, it’s better. I’m much more able to focus on living a good life, as the life it is, rather than regretting the life that is not.
But the stubbornness, the perseverance, that served me well in my professional life did not serve me well here. It took years to learn to pace myself, and I still struggle with that.