On Secrecy

In the midst of Covid-19 lockdown, I took a virtual playwriting course from America’s most produced playwright, Lauren Gunderson. From her wisdom, I gleaned that the key to quality dramatic conflict is secrets. Secrets held by characters. Secrets kept from characters. And, ultimately, secrets spontaneously revealed.

I’d wager that revelation is the fate of most secrets. Eventually, all will come to light.

So why do we keep them?

Sometimes out of fear. Sometimes due to a presumed sense of protection. Often, arguably, because of shame. As shame researcher Dr. Brené Brown is known to espouse, “shame thrives on secrecy.”

For more than half of its current lifespan, I kept my illness secret for all of these reasons. I was afraid people would pity me. I wrongfully assumed that people would discredit my ability to contribute meaningfully to my work, so I kept the disease close to my chest in order to safeguard my company. And in personal relationships, I was ashamed of the burden of disease that would be placed on those that were close to me. And, more than that, I was ashamed of my body, of this vessel that was weak or broken enough to allow the sickness to creep in at all.

All of these fears, shames, and ideologies are fallacies. I see that now. But they were very real to me at the time. Hence, secrecy.

The last two books that I have read featuring characters with MS tell similar stories. 

In Sweet Salt Air by Barbara Delinsky, Julian, a pediatric surgeon, conceals his MS diagnosis and increasing debilitation from his parents, his children, his friends, his co-workers—everyone except for his wife, Nicole. What’s more, Julian insists that Nicole keep his secret from all of her trusted confidantes as well. In doing so, he places a psychological burden on her shoulders and introduces an unnecessary strain on their relationship (on top of the very real burden and strain of disease).  

Ultimately, after his disease progresses beyond the point at which it only manifests invisibly, Julian is outed by his medical co-workers. Spoiler alert: his world does not come crashing down. With the support of his colleagues, he alters his career path to speaking and teaching. His parents and children rally around him. His marriage is happier. Still, he could have saved his wife—and himself—a world of strife and anxiety had he been honest about the situation sooner.

In The Kitchen God’s Wife by Amy Tan, a Chinese-American daughter named Pearl refrains from telling her immigrant mother about her MS so as to avoid the mother’s critical nature, guilt-tripping, and superstitious theories about how the illness could have been prevented. What the reader comes to learn, however, is that both mother and daughter are keeping secrets from one another—and those secrets impede them from fostering a healthy, loving relationship with one another. 

Pearl’s aunt, who emigrated from China after World War II with Pearl’s mother, insists in the early stages of the novel, “you must tell your mother, Pearl. Tell her about your multiple neurosis.” I will admit, upon reading that line and its humorous misnaming of Pearl’s disease, I laughed out loud. Comedy, after all, is rooted in truth, and disclosing secrets can drive a person crazy.

Here’s what I loved about The Kitchen God’s Wife: Pearl made the decision to tell her mother the truth herself instead of having the secret unveiled for her in some high moment of dramatic conflict. In this way, Pearl had agency over her disease. She controlled the narrative—and with an unpredictable disease like multiple sclerosis, the narrative is often the only thing that one can control.

So what was it that finally drove me to exit the shadows?

I suppose it was the weight. Keeping a secret is heavy. It is fatiguing. And I was tired. I was ready to lay down my load.

Was it terrifying to start telling people openly about my disease? You betcha. But I wasn’t met with judgement. I wasn’t met with limiting labels. And I have only been met with a marginal amount of pity.

What I often receive, instead of the shame and constricting narratives that I was so afraid of, is praise. Admiration. Strength. It is liberating and life-giving to live the truth out loud.

And now I fight against the secrecy.

My writing is one way I do so. Speaking about my disease openly is another. Through it all, I am able to embody the fact that living with a chronic illness is nothing to be ashamed of.

Earlier this month, after meeting one of my aunt’s longtime friends, he asked me, “And how is your… MS?” His voice dropped to a dramatic stage whisper as he said “MS,” as if telling me that he knew my secret and could be trusted in his ability to keep it.  

Six years ago, such a delivery would have enraged me. Instead, I answered confidently, at normal volume, “my multiple sclerosis is managed. The heat is rough and I experience symptoms daily, but I haven’t had a relapse in a few years and my current medication seems to be working.” 

Then, because grace is key, I added, “thanks for asking.”