The idea of ‘living with an illness’ continues to intrigue me. Lately, I’ve been thinking about the transition from an illness ‘crisis’ to the ho-humness of living with an illness.
In the first few years after my diagnosis, I was anxious about the illness, the treatment and about dying at such a young age.. There was an intensity and drama that shaped my days. Life was suspended as I waited either to die or to get ‘back to normal’ and move on from my illness.
Except neither of those things happened. Fortunately, I didn’t die, but life never really got back to normal either. Or, rather, a life of illness became the new normal. It became normal to not have much energy. It became normal to look pregnant. It became normal to hang out at the chemo unit. I don’t remember when or how the transition happened. When did I come to accept that this was my life?
I look at other patients in the hospital sometimes and see the deer in the headlights look that some have. I remember how it felt to wear that look. I remember those early days and what a scary and intimidating place the hospital was (in my pre-flouncing days). I remember that time, but as if I’m looking through the wrong end of a telescope. I remember the feelings from before, I can see the change to the present, but I can’t remember when that moment or series of moments happened. It was a subtle change.
While I don’t remember the ‘when’, I can surmise that the ‘how’ was an acceptance of my new life. Not a giving in, but finding a way to say, “All right then, let’s just carry on.” Not that I don’t still have my moments, but they are fewer and farther between.
I’m just now realizing that when I meet people who are hearing about my illness for the first time, that they are thrust into the drama and intensity part. What I need to convey to them is that I’m already in the acceptance part. “Oh, yeah, this is old news. I’ve lived with it for years.” This might just be the key to helping people with the shock of learning my story for the first time.