Don't Ask, Don't Tell (part 2)

This post comes a week late. I intend to pick up on the theme of shame that I brought up in the first instalment of "Don't Ask, Don't Tell," but I've really been struggling with it, and I'm not sure why. So rather than continue to over-analyze and self-edit, I'm just going to jump in and see where things go.

Cage of Shame, Levoča, Slovakia
(image licensed under Creative Commons)

In Part 1 I wrote about shame and how it impacts people with chronic illness, specifically inflammatory bowel disease (IBD). My sister commented on the post and left a link to an incredible TED talk by Brené Brown, Research Professor of Social Work at the University of Houston. In it Brené talks about the relationship between vulnerability, shame, and how shedding a light on shame--speaking about that which shames us--perhaps doesn't eliminate, but certainly reduces, the power that shame holds over us. This has certainly been true in my case; speaking and writing about my experience living with Crohn's, and now an ileostomy, has been incredibly empowering. Yet I still find myself procrastinating over this post, and I can't quite figure out where that hesitation is coming from. 

In her talk on shame, Brené describes the "vulnerability hangover" that she experienced after giving her first TED talk the year before. I want to be honest in what I write in this space, because this blog is as much about working through things for myself as it is abut educating and supporting others. But I'm afraid of sharing too much, of inviting too many people in too intimately. I do, in short, fear the vulnerability hangover. But, as Brené points out, opening up and inviting people in is exactly what is necessary to move past shame. She says:

Shame is an epidemic in our culture. And to get out from underneath it, to find our way back to each other, we have to understand how it affects us and how it affects the way we're parenting, the way we're working, the way we're looking at each other. [...] If we're going to find our way back to each other, we have to understand and know empathy because empathy's the antidote to shame. If you put shame in a Petri dish, it needs three things to grow exponentially: secrecy, silence, and judgement.

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For a long time I lived in secrecy and silence about my Crohn's because I feared the judgement. I didn't want my Crohn's to affect my relationships, particularly those that were still developing. I didn't want my Crohn's to define me. I still remember meeting a friend of my aunt's for the first time, and after my aunt introduced us her friend's first words were, "Oh, you're the one with Crohn's!" That's exactly what I didn't want; I didn't want people to remember my disease before they remembered my name. I still don't want that, but over the years, as I slowly got sicker and sicker, I learned to embrace that part of my identity because Crohn's does define me--at least a part of me, anyway. I would not be who I am today if I did not have Crohn's, and now an ostomy. How could I expect anyone to accept me without judgement if I couldn't even accept myself? In many ways, the world sees us as we see ourselves; we wear the lens through which others view us. If we project nothing but self-criticism and chronic shame, how can we expect the world to give us anything back other than judgement?

In her talk on shame, Brené reminds us that Carl Jung referred to shame as "the swampland of the soul." It is such an apt metaphor. It is so easy to get mired in shame to the point that we cannot extricate ourselves unaided. And that's where empathy comes in for, as Brené says, "The two most powerful words when we're in struggle: me too." But in order to allow others to empathize with us, we first need to open up, to--in short--be vulnerable. It took me a lot of years to learn that lesson. I needlessly suffered alone for so very long, and it came at the expense of my mental health. Ironically, even though mental illness is probably among the most stigmatized of health issues, I was more willing to discuss my depression than I was my Crohn's. But when I finally did start opening up about my Crohn's, do you know what happened? People almost always responded with empathy and support rather than suspicion and judgement. That's why, from day one, I decided to talk about my ostomy. I'm done hiding.

One last thing before I end this post: I should address the title. The reference to the American military's "Don't Ask, Don't Tell" (DADT) policy is intentional. DADT created a legacy of shame that is only today being addressed, if not redressed. DADT has also become shorthand for how shame is endemic and even institutionalized in our culture. I've learned, since letting go of my own shame, that it can be internalized to such an extent that we no longer realize the impact it's having on our lives. And that's the real shame in all of this.

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Don't Ask, Don't Tell (part 1)

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In my previous post I made brief mention of the sense of isolation one feels when dealing with a chronic illness. In writing this post I quickly discovered that I have *a lot* to say on the subject, so I've divided it into two instalments.

I would say that experiences of alienation or isolation are especially true of inflammatory bowel disease (IBD) patients, but Freya Symes, in her wonderful blog Finding Freedom with Epilepsy, recently gave voice to many of the concerns I face. Though I do find comfort in knowing that many people are struggling with the same issues I am, I do believe that each case is unique and not all illnesses are created equal. I was, for example, quite shocked to learn from Freya of the many ways in which epileptics are alienated and ostracized. I've never believed that epilepsy is a contagious condition, so I was surprised to read in Freya's blog how many times she's felt shunned for that very reason. I, of course, can only speak to the Crohn's case generally and my own experiences specifically. 

When I was first diagnosed with Crohn's disease in March 1997, my initial instinct was then, as it is now that I am living with an ostomy, to get involved. So I joined my local chapter (I still lived in Calgary at the time) of the Crohn's and Colitis Foundation of Canada (CCFC) and soon held a position on the executive council. Two things stand out for me, all these years later, from my time volunteering for the CCFC. First, it was through my work with the Calgary chapter that I met Dr. Remo Panaccione, who became my GI specialist. Meeting Remo was life-changing at that time because he helped me not only to understand my condition more fully, but also gave me the confidence to start taking control of my own healthcare experiences (a process which is ongoing). I trusted Remo to such an extent that, when I moved to Edmonton in 2001 for grad school, I continued to return to Calgary for treatment under Remo's supervision. I made the 3-hour (one way) commute regularly until 2003 when I was hospitalized for the first time because of complications related to my Crohn's and required more frequent and closely monitored medical care.

The second thing that has stuck with me for all these years is an off-hand (and rather flippant) remark made at a chapter meeting during a discussion of potential fundraising options. Someone on the executive suggested we hold a gala benefit and silent auction. The idea was immediately poo-pooed (no pun intended) as unrealistic. "IBD isn't 'sexy' like cancer. We'd never raise enough money to cover our costs." Now, this comment wasn't meant to offend cancer survivors, but to point out the hierarchy of awareness among the general public whose hard-earned cash is coveted by hundreds of charities supporting a multitude of medical conditions. Cancer is "sexy" because it has the best name recognition thanks to the massive charity machine driving the cause. Think of Terry Fox and the many "Walks for the Cure" you've seen advertised on TV. In North America it's culturally acceptable to talk about cancer. As Freya points out with respect to epilepsy, some conditions remain well outside of our cultural consciusness, and in many cases stigmas still hold fast. This is certainly true of IBD.

I refer to Crohn's as my "poo problem." And "there's the rub," as Hamlet would say. You don't talk about poo in polite company. No one wants to know how many times I've run to the toilet on a given day, nor how many times I've had to change my pad because my fistulas won't stop oozing. Nope, you just don't talk about it. When I'd call in sick to work because I couldn't leave the bathroom for more than 5 or 10 minutes at a time, I'd say I had a migraine. Once I became friendly with the receptionist in the Faculty of Arts office and had confided in her about my illness, she understood that "migraine" was really code for "I'm spending the day in my underwear because if I have to waste time unzipping my pants I'll shit myself." She insisted the code wasn't necessary, that other people just called in and said they had diarrhea. I couldn't help but wonder what horrible ailments those professors were dealing with if diarrhea was the excuse they willingly left on the office voicemail! But it all comes down to the same thing: shame. Where do each of us draw the invisible line between what is simply embarrassing and what shames us?

We're taught early to hide our bodily functions, even from our closest family. By two and a half years old, my son--unprompted by anyone, as far as I know--started "hiding" to poop. This usually meant squatting behind the coffee table or in the corner beside the TV. Now that he's nearly three and potty training is underway, he makes me sit on the edge of the tub and cover my eyes while he goes. "Mummy don't look at me," he'll exclaim if I sneak a peek. Where does this come from, this seemingly innate instinct to keep the workings of our bowels private? Is it the beginnings of shame that is exhibited in Euan's behaviour? It's certainly not modesty: he happily stands in the tub to watch himself pee at the beginning of every bath time, inviting me to witness the event with an excited, "Look, mummy! I'm peeing!" What difference has he perceived in adult behaviours surrounding peeing and pooping? What makes one acceptable, even funny, and the other disgraceful? And what happens to those of us whose lives become overrun by and identities entangled with that which we are supposed to be ashamed of? See why I need two posts to deal with this? It's a lot to digest! (Again, no pun intended--well, maybe a little one.)