Fear of health

I read an interesting article in the Globe and Mail a couple of weeks ago: http://m.theglobeandmail.com/life/health/health-facts-and-arguments/goodbye-lupus-you-dont-own-me-any-more/article2311757/?service=mobile

This entry to the Facts and Arguments section was submitted by a woman who struggled with lupus disease for 25 years before being essentially cured by an experimental treatment. While she was thrilled, there was an adaptation that was necessary to adjust to this new normal of health.

When I was diagnosed 12 years ago with my illness, we were ploughing along on a trajectory of kids, jobs, and new home. We had our life mapped out pretty well when we were suddenly forced to take this unexpected detour created by my diagnosis. We have spent years adjusting. I have had to adjust to a different level of health and a changing body.  We have had to adjust to regular medical appointment and changing expectations of how I could contribute to the household. We have had to adjust to changed expectations of how our life would unfold. I have had to split my attention not only between family, home and work, but I have also needed to stay focused on struggling for good health. So much of my daily experience, including how people interact with me, is shaped by my illness. As much as I protest that I am not my illness, it has a profound influence over my life and my identity. Hey, I wouldn’t be blogging if it were not for my illness.

What if tomorrow, I was told that a full cure has been found and that I could go on to lead a “normal” life? After the champagne celebration, I would likely have a crisis of identity. It would probably be terrifying. What would be my next steps? I couldn’t go back and just pick up where I left off. I would have to reconstruct myself again with another new normal; a post-illness normal. There would be a big void in my life. A welcome one, but a big one nonetheless. I could see it feeling like stepping out into an abyss.    So many possibilities, yet I would have to get used to trusting my health on a daily basis.  I would have to shoulder more of the burden of work.

It is interesting how the idea of being well again holds a mixture of excitement and fear. I hadn’t thought about my own feelings until reading this article and my reaction surprised me.  Perhaps one day a cure will be a reality that I will have to be brave enough to face. I can only hope.



2 thoughts on “Fear of health

  1. Irene Miller says:

    Hi Sam…
    That was a very interestinig and thought provoking story above. Thanks for sharing.
    Hugs, Irene

  2. This “fear of health” happens to me even between MRIs and scans—when the tumors are shrinking, everyone is so happy and then I feel an expectation, even pressure, to be “well” or better,,,,meaning: Back to normal. And I am so happy when I see the full brain radiation and fasolodex working, but I’ve moved to another place internally that understands those tumors will grow again and this protocol– with its side effects– is now what’s normal. I’m different, and life has changed. ” Back to normal” isn’t a real option. I’m lucky because my immediate family understands and lives on this new planet with me, and I have my art work to pour myself into. Love and the healing power of creativity, of art, is what keeps me steady through it.

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