By

True Strength

“Pretending to be happy when you’re in pain is just an example of how strong you are as a person.” A migraine group shared this on Facebook this morning and I’m so upset that I’m shaking. I’m not dissing the group, they’re doing great work and share a lot of helpful information, but I completely disagree with the idea that putting on a happy face is a sign of strength. Having the courage to be vulnerable, showing people how much you’re struggling, being honest about what you’re going through is the truest show of strength.

I’m very experienced at putting on a happy face and pretending like everything’s OK when I’m in massive pain. I did it for years, thinking it was the only way I could survive life with chronic migraine and not be labeled a complainer. Those were the loneliest, scariest, hardest years of my life. This pretending was a five-foot thick wall separating me from everyone in my life — I couldn’t connect with anyone, even my husband, because I wasn’t being honest about the greatest struggle in my life. I wasn’t even honest with myself.

Believing that putting on a happy face would make everything better constantly invalidated my everyday experience. I questioned my own fortitude and perseverance and the severity of my symptoms. I lost my identity, not just to illness, but because I couldn’t see my true self underneath all the pretending I did. I never allowed myself to process the tremendous grief that came with the quality of life I lost due to migraine. I sunk deeper and deeper into depression.

Only by acknowledging the depth and breadth of my illness to myself and others, have I begun to rise out of depression. I didn’t actively choose to show others how sick I was, but became too sick to function without the help of loved ones and too sick to pretend that I was OK. It’s been a slow process and I’m still learning the appropriate level of openness (see Migraine & Empathy for suggestions on how to gauge disclosures). Sometimes I overshare and worry that others will think I’m weak or complaining, but most of the time I’m able to say “I have chronic migraine” as if it were just another demographic fact, like that I grew up in Phoenix or lived in Seattle for six years. I am continually surprised that people do not think I’m weak, but are awed by what I’ve been able to endure and accomplish.

Our culture’s denial of the realities of illness teaches us that pretending you’re happy when you’re in pain is strength, but it’s actually cowardice and fear. True strength comes being your authentic self and acknowledging all the complex, messy intricacies of real life. It’s not easy, especially considering all my years of cultural conditioning and buying into misguided beliefs about illness, but I’m learning that living a rich, authentic life with strong connections to others is far more rewarding that hiding behind masks of artificiality.

By

The Power & Strength of Vulnerability, Even in Illness

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.”

By

Migraine & Sex. . . and Writing About Them

“Writing is easy. You just open a vein and bleed.” I think of this advice so often that I’ve thought of having it tattooed inside my wrist in the abbreviated form of “open, bleed” with an arrow to a vein. The advice came to mind most recently while I was writing about sex and migraine for Migraine & Headache Awareness Month for Migraine.com. In this case, though, I felt less like I was bleeding and more like I’d hung my dirty laundry in the front yard and shined a spotlight on it.

Chronic migraine complicates a person’s sex life, to say the least. Not enough people are willing to write about it openly and honestly, but it needs to be addressed, so I agreed to try. I wrote a draft and put it away, thinking I could go back and take my relationship out of it, make myself feel a little less vulnerable. Revisiting the draft a couple weeks later, I saw that I really couldn’t remove myself and still capture the heart of the message. So I sent it to Hart and asked if he was OK with all that I revealed. I held my breath, simultaneously hoping he’d give me the go ahead and that he would say “no way.”

All this agonizing reminds me of a post I wrote about my homesickness for Seattle when I lived in Boston. I posted it, cringing as I hit “publish.” Even a year later, I couldn’t read it without feeling overly exposed. I saw it earlier this week and thought, “Oh, that’s no big deal.” What felt at the time like baring my soul turned out to be nothing more than truthful, sincere writing. This, I believe, is a sign that I’ve grown as a writer, that I’m willing to dig deeper in the service of my craft.

Opening a vein and bleeding onto the page can be gut-wrenching and cringe-inducing. It also produces the most profound insights and touches readers in a way that holding back never can. Not to imply I do this all for you. I, too, benefit from writing and publishing thoughts outside my comfort zone. But it still makes me squirm. (So much so that I can only link to the aforementioned post about sex and migraine by writing about how awkward it was to write!)