“Join us for dinner, I feel like cooking.”*
“Yes, get me a ticket for the baseball game.”*
“See you at yoga tomorrow.”*
*unless I’m too pained, dizzy or nauseated to do so
For about 10 years, this was the pattern whenever I’d make plans: My excitement would build as the dinner/concert/play/party approached. I’d spend the day resting, hoping to build energy reserves, and give myself a couple hours to shower and dress. The migraine pain/exhaustion/dizziness/nausea would persist despite my best efforts to supplicate it. I’d push myself and become distressed, and worry and panic would fuel the migraine. Angry, I’d crawl into bed (or sometimes collapse on the floor) and ask Hart to call our friends to cancel.
After years of disappointments — and lost friendships — from last-minute cancellations, I stopped making plans. The pattern was just too painful to repeat. I withdrew further into the isolation of chronic illness, dragging my husband in with me.
Moving back to Phoenix, where my friendships are long-established, I began making plans again, knowing my friends would understand if I had to cancel and that, if we had couple plans, they’d welcome Hart even if I couldn’t come. So now I make plans with an asterisk. I’ll come to your party, meet you for tea, go to a mini high school reunion, as long as I’m up for it. I still don’t like rescheduling and am reluctant to buy tickets for events that I’m not sure I can make, but I am no longer ashamed or embarrassed when I have to stay home.
Shame or guilt were only part of the problem. If I couldn’t go out, I felt like I was letting migraine win. Like my default mode was healthy and deviance was an anomaly. Truth is, my default mode is migraine (“chronic” might have been the first clue). I’d been too stubborn to see and too ashamed to admit that I was too sick to live a “normal” life. Coping with chronic illness isn’t a matter of winning or losing, but of being honest with myself. And that may be the biggest challenge of all.