In spring, I started a new graduate school program. It was everything I hoped for and more. Along with interacting with the most supportive set of classmates, I also have professors who truly want the best for their students. To top it off, we get to interact with guest lecturers during a 10-day, on-campus residency twice a year.
While at my graduate school residency, I attended a session held by author Jillian Lauren. I’d read her memoir, as I always enjoy reading the work of someone I can learn from. Not only did I instantly become a fan of her work, I'm also a fan of her husband, Scott Shriner, the bass guitarist for Weezer (one of my favorite bands). I had the opportunity to meet one-on-one with Jillian for a 15-minute discussion and walked away realizing I was so nervous—yet excited—that I forgot to introduce myself. I can be awkward sometimes.
Her session, though, is what struck me. It dealt with the Jungian theory of "shadow self." From what I understand, in a rather distilled form, shadow self is that part in each of us that we keep locked away. We don't let others see that part because it doesn't match up with what we'd like them to see. It's a part of our personal history, or character traits, that we're not proud of, or we feel it makes us appear weak. It's everything we don't want to be.
In the session, Jillian had us write a letter to our shadow selves. What encompasses my shadow self? I worry that I am not perfect enough. I worry that I have to work so much harder to keep up—to make up for health issues that I’ve always perceived to be a character flaw. I want to be a great advocate for our community, and I realize now that the only way to do this is by including my humanistic qualities. If I’m putting on that brave face, I’m only perpetuating that stereotype to everyone else. When I’m “in it” with my health issues, I cry. I experience pain and frustration just like everyone else.
In this session we also wrote a letter back from our shadow selves. My shadow self letter was pretty simple: Why do you never let anyone get to know me? Why do you just assume they won’t like me?
I know it’s a weird process—writing letters to and from yourself—but I think it can hold merit for people, especially those used to telling patient narratives. As someone who experiences health issues, it is so easy for me to become detached from my own story. I can rattle off things that have happened to me through my medical journey without any inflection of the pain they’ve caused me. It hasn’t been all bad because I’ve gained a community in the process.
Not everyone is creative, but we are all storytellers. How we tell our story is a big part of how we train our brains to see our lives. After bad hospitalizations, I’d often come home and think, “I’m not even a person.” It’s hard to feel like a person when 20 medical students are shuffled into your room to gawk at you. In time, I learned it was necessary for me to repeat things to myself even if they didn’t feel true. I’ve switched to: “You are worth more than this,” “Your story matters” or “You are not inconveniencing your doctors by not being a simple medical case.”
I know I am not alone in this. I have heard others rattle off a list of their bleeds, sounding as though the setbacks they caused didn’t affect them. I’ve heard people downplay their own life stories because they (fortunately) were diagnosed early. This doesn’t mean that they lack stories. They are choosing to interact in a community of similar individuals. Each contributing person (no matter what level of severity) makes us formidable as a support system for one other. It also leads to spotlighting progress, as we see how each of our patient narratives can be easier through earlier diagnosis and better treatment. We need these stories to see how things can be!
My suggestion is to approach your patient or caregiver story in a new light. Take some time for yourself; sit down and group your thoughts for a moment. Write a letter to your bleeding disorder—or to your loved one’s bleeding disorder. Tell the bleeding disorder how it has affected your life, in positive or negative ways. Figure out how it has shaped you as a person. Then take a moment to regroup, and write a letter back from the perspective of the bleeding disorder. You may discover things you never realized you were thinking before. You may feel a little bit more in control of your own story for a few moments. Words are power. Words can free us.