It’s been 35 years since I developed the first symptoms that were eventually identified as signs of Multiple Sclerosis. Over the years, I’ve developed other autoimmune diseases and syndromes and when I think about it, all I can say is that it’s been a slog. Illness has taken up too much of my life: the time spent trying to figure out how to get things done while my body screamed with pain or the need to rest, time spent searching for diagnosis and getting treatment. Too much of my life’s identity consumed being a patient.
This past year, I’ve been healthier than I’d been for the previous 6 years. And guess what? Being healthier, I felt a little lost. Now that my life wasn’t consumed with taking care of myself, I could focus on the fun stuff — family, friends and work . But I didn’t slip into this easily. I found myself wondering who was I, now that illness no longer consumed my time?
Funny thing is that once I realized what was going on, I recognized a familiar place. I’ve had several long bouts of even worse health issues than this that were then followed by periods of ‘normal’. Each time, I have to recalibrate who I am. I find myself questioning my work (is it enough, am I good enough, what do I want to be doing?), my family (do I give them my full self, am I pretending to be what I’m not, am I hiding behind illness?), my friends (do I know how to be a good friend now that I’ve got the energy for it, do they know how to be a friend to a healthy me?) This time I had to dig deep into the pockets of resilience that are still there.
I think this ‘off balance’ response to moving into a healthier state makes sense when you live with debilitating chronic health challenges. As health waxes and wanes, your identity shifts to adjust. It makes sense when I think of it. But it’s tricky. I watch as my clients struggle to adapt and I tell them (and me) that this is another example of why resilience is so important.
It’s helpful to know that this is necessary. I don’t ever want my identity to be wrapped up in being a sick person. And, certainly , even less so, when I’m in a healthier state. But knowing this doesn’t make it easy, does it?