Just the thought of being vulnerable makes most people recoil. Open yourself emotionally to the whims of others? No, thank you! But when you’re sick, you have no choice. You must rely on others to take care of you or the responsibilities you cannot deal with; you have to repeatedly reveal your deepest agonies to health care providers (who may not be understanding) and hope they’ll give you the treatment you need; you have to let others see you at your worst, when you have absolutely no strength to keep up airs.
The vulnerability inherent in illness feels like a weakness, when the truth is actually the exact opposite. Vulnerability is a sign of strength and courage, as well as a powerful tool that allows us to connect deeply to others and live wholeheartedly, according to the research of social work professor Dr. Brené Brown. Her TED talks provide an inspiring look at vulnerability and shame (another major emotional factor in chronic illness).
I highly recommend watching both. In The Power of Vulnerability, Brown discusses her research and personal aversion to vulnerability, as well as how important vulnerability is living fully. Listening to Shame addresses the power of vulnerability as well, but looks at the epidemic of shame in our culture and the difference between guilt and shame — an important distinction for those of us with chronic illness.
Brown’s talks aren’t proscriptive, but provide insight into the power and strength of vulnerability. Although I didn’t realize it, I’ve been applying the principles she discusses as I’ve become increasingly open about the true impact of chronic migraine on my life. In letting people see me when I was at my sickest, in reaching out for help when Hart and I were alone in a new city, in not hiding the magnitude of my pain or degree of disability from friends, my connections to others are so much deeper and richer than in all the years I tried desperately to pretend I wasn’t as sick as I am.
By trying to hide chronic migraine, I was putting a wall between myself and anyone who tried to connect with me. Because of my shame over being sick, I wasn’t living honestly or authentically. No one could know me, not even myself. It’s not coincidental that I lost my sense of identity at the same time I was attempting to be invulnerable.
Vulnerability is frightening for everyone. To be open about an illness that is heavily stigmatized and often dismissed as inconsequential or made up is even more terrifying. And, yet, Brené Brown’s research shows that being vulnerable is the key to living wholeheartedly and authentically. It is also a sign of tremendous strength. As she says in her talk on shame, “vulnerability is our most accurate measurement of courage.”
“[T]echniques based on the Buddhist teaching of mindfulness have reliably been the most effective, helpful coping strategies I’ve used in my 25 years with chronic migraine. While plenty of people approach Buddhism as a religion, I think of it more as psychology; a collection of wise insights to help people live their fullest lives.”
Migraine & Mindfulness — “Bruce Almighty,” my favorite of the posts I’ve written for Migraine and Headache Awareness Month is now up on Migraine.com. No matter what your religious or spiritual bent is, mindfulness is an amazing tool, not only for coping with migraine, but with all of life’s stresses. To make this wonderful technique accessible to everyone, I focus on a secular approach to mindfulness in the beginning of the post, then include links to other incredible leaders who are more religious in their teachings.
“C’mon, you don’t feel that bad,” I told myself upon realizing I was slumped over the coffee table with my head resting on my arm. My next thought was “Oh, wait. Maybe I do.” What an exciting moment to realize I was listening to my body.
A couple years ago I conceded that if I find myself sitting on the kitchen floor, I probably feel too bad to be cooking or cleaning. Or if I’m resting on the couch and discover I’m in the fetal position, the migraine is probably pretty bad. Instead of shrugging off my body’s cues as melodramatic, I finally see that unconsciously engaging in pain-soothing behaviors is a good indication I’m in bad shape.
I have long done so much on a good day, trying to take advantage of it, that I push myself into days of sheer exhaustion and severe migraines. That hasn’t been happening so much in the last year. Perhaps this is a sign that I’m paying attention when my body tells me to stop.
How does your body tell you it’s time to rest?
Hart and I planned to go to the Harvard Museum of Natural History last weekend, but a migraine kept me from going out. Instead of sitting on the couch or going back to bed, Hart and I worked in the kitchen then watched a movie and the Olympics. We made salsa, hot sauce and cornbread. It wasn’t what we planned to do and I operated at less than full capacity. But it was a lot of fun and we got to spend time together. In the end, I wasn’t even disappointed we didn’t go to the museum. I still had a great day.
People often ask how I can have such a positive attitude about life with migraine. I always thought it was a joke when I answered “I’d be dead otherwise.” I wasn’t kidding. I can’t imagine how I could have gotten this far being this sick without my optimism. I think it is the lack of disappointment that keeps me going. I can be happy whatever I’m doing (if I’m in the right mindset).
In my “I can’t” phase, I lost the crucial ability to make backup plans. I assumed that if I couldn’t make my original plans, then I couldn’t do anything. Admittedly, this was often because I was so sick that I couldn’t do more than lie in bed or sit on the couch. Yet the art of making plans B, C or sometimes D contributes to the optimism and flexibility that allow me to enjoy life despite migraine and depression. I make lemonade through the optimism that I can still have fun and still do something even if it wasn’t what I intended. I need enough flexibility to come up with alternatives when necessary.
I’m not say it is easy or even always possible to have a positive outlook. I’m fortunate in that I was born a Pollyanna, but I also work hard at it. I try to look for the good (or not too bad) in all that I do. Sometimes it is as little as having the energy to put dishes away or enjoying an episode of Ugly Betty. This helps me stay in the moment and feel like I am truly living my life, not letting it go by in a migraine haze.
I often hear people say chronic illness has taught them to enjoy life. I’ve certainly come to that conclusion. What has life with headache or migraine taught you? How do you get through the days?