If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.
Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.
Now, the thing is … I’m not going to get better.
I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.
This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.
It’s just that I have finally arrived at a point in my life that is all about accommodating to realities, living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.
Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better. We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.
“Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA