I’d like to provide some clarification about my intentions in writing this blog. I’ve noticed a common thread in many of the responses I get to this blog, and to my story in general. Note: Nearly all of these responses are in person or through private messages (don’t worry, folks, commenting is encouraged here!). This common thread is pervasive throughout our culture, and seems to have deep roots in several religious traditions. This is also not anything new to me, it’s just become more and more obvious to me this year, since my cancer diagnosis. And it stands in contrast to my own view of my illness and the reasons why I share my experiences publicly.
In writing this blog, I am not asking for pity, or comfort, or attention. I am not even asking for commiseration. I do not write about the hardest parts of my experiences of illness with the hope that others will read these words and somehow share the burden of my suffering. I am not putting all this out here wishing that you will relieve me of some part of my tragedy, or pray away my grief, or even “bear witness” to my pain and misery.
In writing this blog, I am not asking for pity, or comfort, or attention.
And that is because, as a person with chronic illness, my life is not one giant tragedy. My days are not suffering end on end. I live a full, happy life with continual ups and downs, just like any other human being. I am living well with chronic illness, no in spite of it. It’s just that the facts of my reality might be slightly different than yours, and the vocabulary of my regular experiences might seem foreign to you. But just like every other “sick person” out there, I am not a walking tragedy.
Just like every other "sick person" out there, I am not a walking tragedy.
The view of sickness, especially chronic or life-threatening illness, as abject tragedy comes from many sources in many cultures, throughout history. This view is also deeply ingrained in us, from our childhoods and from the traditions we inherit. It only just occurred to me this morning that Christianity, the specific tradition that I come from, carries many beliefs that position sickness as pure suffering, a cross to bear, or grief that others can pray away. Don’t get me wrong, I really do appreciate when others pray for me, because it means, deep down at the core, that they care about me and think of me kindly. But I don’t think I believe that sickness is inherently something that others need to bear witness to in order to ease my suffering, or that I should ask others for intercession to relieve my pain. While these ideas give people a way to care for those who are sick or in pain, they also create a binary in which sickness equals bad and non-sickness equals good. I’m only just beginning to see the far-reaching repercussions of that binary.
My own spiritual beliefs fall closest to the Buddhist tradition, and I find a lot of peace in Buddhist practices. So, I believe that there is a difference between pain and suffering. Everyone experiences pain in different forms; it is a fact of the human condition. But suffering is what we control. Suffering is the individual’s reaction to the reality of pain. As Tara Broch writes, “pain is inevitable, but suffering is optional.” Within that schema, illness is pain, not suffering. Sickness will come and sickness will go. Some will know it and some will not. This means that sickness is not, in itself, a tragedy. The body is impermanent, anyway.
So, why do I write this blog, then? To advocate, to normalize, to search for solidarity. Because I believe that people with chronic illnesses are not walking tragedies, I want to advocate for all of us, within the culture and traditions that so often respond to us only with pity. I want to raise awareness about the reality of illness, the truths that 117 million people in the U.S.* alone live with every day. We are more than our illnesses, but our experiences of illness still deserve to be talked about. If we don’t talk about these realities and try to normalize them, then how can our society view our experiences as anything but tragedy? To work to normalize chronic illness is to work to give everyone with chronic illness dignity and acceptance. After all, there is nothing wrong with us, really. We are just like everyone else. But there are still so many forces working against us, and so many of our everyday truths are still things that only those with illness understand. So solidarity between those living with chronic illness can help us feel better about ourselves, and not let those cultural traditions that see illness as an aberration or a burden overcome us with grief and self-pity.
So, why do I write this blog, then? To advocate, to normalize, to search for solidarity.
This means that I am asking you, dear reader, not to read about my experiences and think, “Oh no, well at least I can bear witness to her suffering.” I am asking you not to see my life as sadness and tragedy, but as simply a regular human life. I am asking you to share these experiences with me so that we can all work to normalize illness in our society, and advocate for the dignity of all those who live with chronic illness. Let me close by quoting the final paragraph of my own first blog post:
“If being sick is a core part of my self (which it absolutely is), then I cannot allow my sickness to be a negative force in my life. Self-respect and self-worth lead me to honor my sickness as simply my reality, not my burden or my shame. That doesn’t mean it’s all pretty, but that does mean it’s all true, and it’s all worth sharing.”