Why the shame with chronic pain, anyway?

 

Paris Tuileries Garden Facepalm Statue. Image courtesy of wiki.media.org
Paris Tuileries Garden Facepalm Statue. Image courtesy of wiki.media.org

On Shame

The nature of chronic pain is a camouflaged illness. Chronic pain patients don’t look “sick” and; therefore, they encounter disbelief, suspicion, and stigma from others placing the burden of proof on the person experiencing pain. There is also a level of self-stigmatization that arises. As we become aware of the undesirable stereotypes that surround chronic illness, we accept them into ourselves and build our self-esteem on these perceptions. In the many interactions I have had with fellow chronic pain patients, the resounding expression is that when they have attempted to share their experience of daily pain they feel vulnerable, boring, like a broken record, as if they complain or whine too much, or they are treated as if they want to have pain. I have been there too. We all notice the phone calls dissipating, the “check ins” dwindling, and the feelings of bitterness—“well, at least I know who my real friends are.” Talking about chronic pain or illness puts you at risk of representing self-pity. We are constantly encouraged to take control of our life and responsibility for our health. However, the big secret is we lost control. Therein lies our true problem. I have always thought of myself as strong and having chronic pain. I have pulled 16 hour days. Sure, I winced a lot, covered myself in Lidocaine patches, and had 3 Americanos with extra double shots to counter the sedating medications I am on; but, that is just a part of strength in the face of chronic invisible pain.  There is a secret private world of balancing healthcare struggles, diagnosis, and contemporaneous illness and then there is this person that everyone knows and loves. I have ignored it, locked it away, dismissed it, and called it separate from the self.  In philosophy, according to the Platonic/Socratic trajectory, the tangible and fundamental world is only a shadow of forms.  The forms in Plato’s work, as an addition to the Socratic heritage are: eternal, nonphysical, and essential. The forms embody excellence, an ideal in which the real world participates, but it is nothing like the ideal. I think about my “old” body. She is now my “form”.  I utilize her to manage those 16 hour days and the pain comes from the outside. It doesn’t belong in the world of excellence. So, is that the face strength?  Or is it merely shame and my all-out effort to avoid embarrassment, humiliation, rejection, and a sense of failure?

On Finding my Voice 

My voice is like the subway living down the street. For most of my 10 years living with chronic pain, it has been stalled between stations. There are a great many reasons for this delay.  I get up in the morning decorate my curly hair sometimes with beads or silk flowers, dress in something creative, and I go about my day pretending that I don’t feel as if my spine has been replaced by bricks left out on a hot summer day. I always try to make a little extra effort to validate a “normal life.”  However, lately, I’ve been thinking about shame and chronic pain and why my voice is stuck.  We all know that it is complicated—trapped between our perception of ourselves, what others might think, what we reason others’ feel about us, and how we want to imagine ourselves versus who we truly are. I was told this week that I had to be fitted for a spinal injury corset. Approaching the summer months, I was less than thrilled to be weighed down by something hot and heavy. Walking to the northbound train, after leaving physical therapy, I thought: “well, who’s going to love me now.” I wish I could tell you I thought about my health. That this is a necessary part of healing to stabilize my crumbling spine from the thoracic vertebrae on down until my muscles rebuild the necessary strength to support my body. Or, that I felt determined to whip my body back into shape as soon as possible.  Or, even that I looked at it from a scientific and clinical level from my own training. It’s probably not correct or justified to say but, I only felt fear that I had yet another part of my life to conceal. I had to add extra effort and additional physical and emotional energy overhead.  But a strange thing happened recently. I started to feel that train rattle and rev. My voice is starting to swell. It is growing larger, more robust, and less ashamed. Do you know where it is the loudest? It is with you. Here it is and it’s nice to meet you. You are the reason why I write. Maybe you read something here and you recognize the sound of your voice. Just maybe my thoughts help you feel less alone. If that happens for just one person, then my voice grows a little louder.

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7 Comments Add yours

  1. Reblogged this on soulinsightsblog and commented:
    My new word: painshame

  2. Pingback: Sunlight in Winter
  3. “well, at least I know who my real friends are.” yes, absolutely. except sometimes, i tell the universe, i didn’t want to know. at least not in such clear detail. i wanted to have good intuition, a sense of who would and would probably not be there for me. i never wanted to find out for sure.

    “There is a secret private world of balancing healthcare struggles, diagnosis, and contemporaneous illness and then there is this person that everyone knows and loves.” yes, yes, yes.

    1. Thank you for your comment. I am ecstatic that my writing means something to you. With chronic illness, we are so often left without vindication and so I find solace in the fact that maybe something that I have felt, experienced, or thought relates to someone with similar circumstances. By the way, the name of your blog, does it come from the Camus quote “In the depths of winter, I finally learned that within me there lay an invincible summer.” If not, he is one of my favorite authors. He took on the challenge “how can we find meaning in something so meaningless” and that strongly resonates with me.

      1. Actually, no– I didn’t have that quote in mind consciously when I came up with my blog title. Interesting that you should ask, however– I have heard that quote for the first time about ten years ago, and absolutely loved it. I think I internalized it on an unconscious level. I haven’t read much by Camus, other than reading “The Stranger” in high school, but maybe I’ll revisit his work. There are definitely things I wasn’t able to appreciate at that age that I do now.

        By the way, the name of your blog also stands out to me. My friend/roommate Romina is one of my biggest influences to write– she urges me to be more personal on here, and not to be afraid of what people think. I had taken somewhat of a break from blogging at the time that I moved in with Romina, but her encouragement is one of the main reasons I’m back on here. And who does she talk about all the time? Frida Kahlo. She tells me the story of Frida, and tells me to keep going and create my art, no matter how much pain I’m in. We had just had a big talk the day before I found your blog. I think it’s so interesting that she’s an influence to you too.

      2. Yes, after my back surgery, I had to remain on bed rest for about a month to reduce swelling around my spinal cord. I ended up reading many of her biographies, her letters to loved ones, and picture books. This woman made meaning from her bed, on her corset, and through unbearable pain to create art that touched me in that moment. And every second she could, she drank from life. Isn’t it strange how we find what we need in life in the right moment?

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