A colleague emailed that she’d been quite sick lately. “It’s the chronic stuff … old and familiar. Unfortunately it doesn’t get emotionally easier or less frightening as years go by. It surprises me how the chronic still sends me reeling- – after all this time and experience with it!”
I was surprised. She’d never spoken of fear around her own chronic illness. It seems that experience and wisdom weren’t making her chronic illness path less bumpy.
Over the past few years, I’ve been wrestling with my own resilience. I’ve lived with chronic disease since I was 29 and it was clear to me from the first multiple sclerosis flare, that I responded to chronic health challenges with some fear and anger — and a good dose of optimism. Somewhere deep in my core, I believed that regardless of how horrible the present moment might be, it would get better. Either the disease would quiet or I’d find a way to feel as good as possible about my life. I referred to this optimism as the most healthy part of my body, it was my ‘denial chip’.
Truth is that a part of me was surprised by my ability to bounce back. I really liked that person.
Now, in my mid 60’s,she’s harder to find. If I had to guess why, I think that the repeated health events and, in particular, the unpredictable nature of it, made the spongy nature of resilience, that bouncing back, wear thin. Over the past few years, when I don’t feel well with new or old symptoms, too often there’s a sad child’s voice. She’s frighted about the future and feeling hopeless about the present. On the good days, I can see that I’m not that child, and I can remind myself that I have the skills to work with her. But the bounce back is a struggle, it doesn’t just organically happen on its own as it once did. Is this the natural course of an aging person? Is this what long time difficult chronic health can do to a person? Could it be both or something else?
Many tell me that the ability to stand up for ‘another round‘‘ seems overwhelming and elusive. Clearly, some of us have to work hard to build a resilient response while others find it comes easily. Still there are others, like me, to whom it was a natural response and, although not completely gone, it takes enormous effort and vigilance to revive.
It seems to me that the idea of resilience has grown increasingly popular over the past decade. Just today, I got this in my inbox: A Loving-Kindness Meditation to Cultivate Resilience I can only guess how many shows Oprah has featured on the topic. And yup, it’s got a hashtag, #resilience. Funny thing is that when working with a client, I can find myself tripping over the word since it’s become such a cliche. Cliche or not, however, my own experience and from what I’ve learned working with many hundreds over the past two decades, resilience is a critical key to being able to live as successfully as possible with chronic challenges.
No doubt about it. When your body/mind unpredictably and continually lets you down, it’s easy to understand why fear overpowers optimism. We need that other part to push us out of bed to live a life, rather than watch it slide by.
So, here’s the thing. Following the results of the U.S. election, many write about experiencing profound despair around what is and fear around what’s to come. They describe their own struggle to feel resilient in the face of these difficult feelings. I’m wondering:
- Does fear of external forces (e.g., the results of an election) become easier to live with than fear of internal forces (e.g., your own unpredictable body)?
- Do those who express this despair have prior experience with such emotions? Did this event spark something that hadn’t been there before? Is it different for those who have experience than those who don’t?
- Many have been mobilized to action. Do they also experience despair or are the two (despair and action) incompatible?
- How does age and prior experience with suffering impact how a person responds to such events as these?
We, in the chronic illness community, have a lot of experience with the notion of resilience. What’s your story? How do you respond when you experience fear, despair or pain? Has your response changed with growing up and older? How have you managed the changes you face?
Please, share your story here.