-Shame and Illness-
I was watching a movie where a young girl fought off an attacker in a dark parking lot. She received several bruises but a bystander stopped in, preventing anything else from happening. This young girl, bruised and traumatized did not want to report the incident to the police. She understandably wanted the memory and the event to fade into the background of her life and continue moving forward.
A well-meaning friend saw her withdrawing from society. He knew what had happened and wanted to help. It needed to be reported. Against her wishes, he told a trusted adult who stepped in and took her to the police station. Shame was written all over her face as she retold the story. Why as the victim, should she be ashamed, she had done nothing wrong? She was in the wrong place at the wrong time, and yet the burden of proof was still on her. In addition to the trauma, she now carried shame and fear with her.
I cried with her because I too have carried shame. Shame from an illness that for many years had no name. Shame from the lack, that eventually wrapped itself around every aspect of my life. And shame from my illness, that stole away much of the vigor and joy I had wanted to pour out on my kids while they grew up. In the documentary that we filmed this year called Disappearing From Society, I say “I’m not sure why there is so much shame involved with illness, BUT THERE IS.
I watched as this girl cringed while showing her bruises to the indifferent camera man at the police station. Unaware that his indifference towards her reinforced the shame she had already began to carry. I cried with her because I felt that way through 15 years of doctor appointments. And 15 years of not having a diagnosis. I tried so hard NOT to cry in these appointments because if I did they would put me in the ‘depressed category” and stop searching for options on my behalf. But it is hard to hide your tears as your life is slowly falling apart.
I couldn’t articulate it at the time, but time and time again as I searched for answers, I found myself carrying the burden of proof. It should not be this way. We shouldn’t have to hide our trauma in order to receive adequate care.” We should NOT have to carry the shame of lack when medical bills can swallow a year’s salary in less than 30 days and still leave you broken and sick. Does the shame mount because we look worn and tired? Or is it because many of the clothes we wear are at least 10 years old?
The part that grieves my soul the most is that after years of appointments and specialists. When you finally do have “proof” that something is in fact terribly wrong because you can no longer walk, or think or work. You are told that it is all in your head, or that you are causing it through anxiety or maybe you want some attention? Our battles my friends are not fought in dark parking lots but within a physicians office. They too can leave bruises on your soul that you long to cover up, because after years of dysfunction you began to doubt yourself.
I have been on this journey now for 21 years. As I have found good physicians and began to crawl out of this accidental journey of life with Lyme. I see things more clearly, for those of you who are still searching for your path towards wellness I urge you to reject shame. Shame in any form does not help you to heal. Instead, it holds you captive. If you are already living within the shackles of chronic illness, don’t agree to be shackled yet again by shame. My heart is with you all on this journey. There is hope and there is healing. You are not alone. The road is long but people are healing in a wide variety of ways.
*Because people often ask, I received good care at a clinic in 2013 and also implemented the Gerson protocol. I continue with both in maintenance mode.
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