Braving the Storm of Illness
Brené Brown has a new book out – Braving the Wilderness. The subtitle is – “The Quest for True Belonging and the Courage to Stand Alone.”
What does that mean exactly and how can we belong or stand alone when you have a chronic illness? We are alone in our bodies experiencing the pain, discomfort, and sensations. How do we muster the wherewithal to weather the storm when we can barely get to the shower?
But first a story ::
Over a decade ago, in 2003 or 2004, I was going to my gym and something happened to me that I’m sure has happened to many of you who live with an invisible illness and who have a handicap tag. I got accosted by a stranger for parking in a handicap spot.
We were standing by the elevator, and she scoffed at me – audibly. And very unlike me, because I’m not good with confrontation but especially not on days when I’m not feeling well, as I was not on that day, I stood up for myself and said, “Why are you scoffing at me?”
She didn’t reply.
So then I said, “Would you like to see my disability ID?” Which luckily I had. I had just moved back to DC but New Jersey at that time, where I had been living, issued a disability identification card along with the tag. And I was still using the NJ handicap tag. DC didn’t offer a disability ID card then but they do now. The card validates the user is in fact disabled despite appearances. And that helped me and enable me to speak up for myself.
She still didn’t reply.
So I added, “Not all disabilities are visible.”
Later, she saw me in the locker room. In the garage, she must have thought I was there going to gym to work out – which I was not. In the locker room, she saw me in a robe. I was in a robe on my way to get a massage because I was in so much pain.
And at that point, she apologized to me.
I couldn’t speak. I just burst into tears.
I cried because I was ashamed I was parking in a handicap spot. I cried because I was embarrassed. I cried because I was angry that I was not well enough to work out. And I cried because it was tough. It was tough to stand up for myself in that moment.
How did I brave that? Where did I find the courage?
What is the wilderness?
What does the wilderness mean for those who live with chronic and/or invisible illness? Brené Brown talks about how theologians and poets and musicians and writers uses the wilderness as a metaphor to stand for a couple of different things ::
a vast and dangerous environment,
forced navigation of trials, and/or
a refuge of nature and beauty where we seek contemplation.
Those familiar with the Bible may recall that Jesus went into the wilderness for forty days before he accepted the call to become a teacher and a preacher.
So this metaphor repeats often in literature, poetry, parables, and fairy tales.
Brown adds that all of them in common evoke notions of solitude, vulnerability and a quest – either an emotional quest, a spiritual quest or a physical quest. (1)
Brown also address the shame some feel around the choice to go into the wilderness – to pursue that quest.
But when we become ill, we are shoved into the wilderness. It’s a storm in the wilderness, often a perilous one
Unlike most, we don’t have a choice. We enter a vast and treacherous place and are navigating trials and obstacles in a quest for physical wellness.
How do we trust ourselves?
What is self-trust? For most of the book, Brené Brown discusses how we trust and create intimacy with others. Trusting ourselves when our bodies are not reliable is a particular challenge. This unsettled relationship with our bodies can truly shake up our foundation and sense of ourselves. Brené Brown breaks down self-trust into 7 components, and below I’ve added some additional considerations and questions for how these apply to we who are ill.
Did I respect my own boundaries? Are we careful about the people we allow into our lives and into our space – physical and psychic? Do you listen to your body and rest when you need? Do you respect the boundaries of your special requirements for rest, nourishing food and movement?
Did I do what I said I was going to do? This, for me, requires a focus on effort rather than on outcome. Because with our bodies being unreliable, we can’t control the outcome. Did you reliably try? Also, don’t perfectionism get in the way of at least trying. We often let the fact that we can’t do things the way we used to be able or the way that we ideally would like to get in the way and so we don’t even try.
Did I hold myself accountable? What are you accountable for? What is in your control and what is not? What can you direct? Truly? Are you acting responsibly for that which you can account for? Are you overly responsible and does that cause you to feel shame? Do you believe you should be able to control more than you actually can? What happens when your expectation hits an immovable reality? Do you hold yourself accountable for things you should not?
Did I respect my vault and share appropriately? In the context of others, these means when you share a confidence, you don’t disclose to others. With respect to ourselves, what is appropriate changes from day to day and even in different contexts. Those with us with invisible illness tend to try and convince people. So we share a lot and perhaps more than we need to because we are trying to help others believe us. We should not share from a need for external validation but to create intimacy – heart to heart.
Did I act from my integrity? Do you have confidence in your own perceptions and perspective? Do you act on what you know is real? Sometimes we don’t know what’s real, we can question our sense of reality because we can’t remember what it feels like to be well and to not be thinking of your body and how it functions all the time. We become inured to a new normal. But we need to believe in our reality because if we don’t know one else will. We need confidence to speak your truth?
Did I ask for what I need and was I non-judgmental about needing help? This is one I still – after nearly 20 years – struggle with so much. I still have a hard time asking for what I need. I still feel ashamed for my lack of self-reliance and for needing help. I struggle with judging myself for being dependent.
Was I generous toward myself? Do you have self-compassion? Are you able to care for yourself without guilt or shame? Is self-care a dirty word to you or are you able to nurture and care for yourself appropriately, as you need? Your illness may require you to need more. Are you meeting that need?
Now you may have have noticed that these 7 aspects of trust spell out B-R-A-V-I-N-G. Brown created an anagram to help us remember!
How Do We Belong?
What can belonging even mean when we don’t even feel we belong to our bodies? Brené Brown had a definition of belonging in one of her earlier books but she has since modified and expanded on her definition. Some parts of it are more applicable and more challenging to those of us who live with illness.
True belonging is the spiritual practice of believing in and belonging to yourself so deeply that you can share your most authentic self with the world…and find sacredness in both being a part of something and standing alone in the wilderness. (3) When we are chronically ill, we don’t like our authentic self because it’s ugly and sick and sad and angry. So we don’t wish to show that aspect of our “authentic self.”
How do those of us with illness who often feel alienated from our friends and family because they don’t understand what we are going through feel a part of something? We are often too much tilted in the directed of standing alone in the wilderness. That first part – the sacredness in being a part of something – especially challenges those of us who are sick. But also – how can we be strong enough to stand alone in the wilderness – amid our vulnerability – when our illness saps all our strength?
True belonging doesn’t require you to change who you are; it requires you to be who you are. (4)
If you’re sick, we often identify ourselves as being a sick person. And of course we want to change that. How does true belonging happen when who you feel you are – a sick person – requires change, when you legitimately desire change?
This is not a part of her official definition but follows on the next page. This to me, is the best part of her definition. In my case, it wasn’t just what I carried in my heart, but that disability identification I carried in my wallet!
What do you do to whether to storms?
How skilled at you with that non-judgement?
How secure is your “vault”?
Do you trust your own experiences and perspective and act from integrity?
EXTRA ELEMENTS OF INTEREST
WEBSITE + WORKSHEET
Conversation Starters and Questions
Brené Brown's website
Strong Back, Soft Front, Wild Heart - A Conversation with Krista Tippet
Sunday Sermon by Dr Brené Brown
Washington National Cathedral
January 21, 2018
Sunday Forum with guest Dr. Brené Brown in conversation with Bishop Mariann Budde
Washington National Cathedral
January 21, 2018
1 Brown, Brené. Braving the Wilderness (Random House: New York) 2017, p. 36.
2 Ibid. p. 39.
3 Ibid. p. 40.
4 Ibid. p. 40.