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.
Danny van Leeuwen says
So far, at 64 I still feel resilient. I call it pathological optimism. But I appreciate what you’re saying. My MS is progressing and I’m settling in, waiting for my new baseline. I find myself taking Ativan more often to sleep at night as that’s when I worry – how much worse will I get? I depend on my wife and kids, I see that they’re worried. I don’t want to burn them out. What if I end up alone? You know – stuff you can’t do anything about and worrying helps not at all. It messes with resilience. I’m very committed to self-care and recalibrating that. I really support my family’s self-care. I’m trying to do the dishes every day and dust since I can’t shovel or vacuum. Anyway, thanks for writing about this. Happy New Year
Kim Wyatt says
I was terminated from my most recent job for “attendance issues”. I had a boss who literally rejected my efforts to be forthcoming with her about my ulcerative colitis, enteropathic arthritis and how my conditions could affect my ability to concentrate, how I could get sick with no warning and how my treatments weakened my immune system.
So I’m trying to come to terms with how I can contribute to the finances of or family (4 people, southern California, its expensive) and not keep losing job after job. Do I just try again? Do I switch gears and work 2 or 3 telecommuting jobs with no set hours? Do I try relaunching my career as a fine artist? I had to stop painting and marketing my art about 8 years ago to focus on working full time. Something had to give and the job with health benefits won.
This is not the first time my medical condition has forced me to change the direction of my life. At 32 years of age, I was busy trying to break into public art. This would be art commissioned for Government Buildings, as part of big development projects, at airports, libraries, fire stations, etc. I was networking, learning to write proposals and then I got sick. I realized, there was no way I’d even be able to travel for these projects, much less physically complete large scale artworks. So I decided to stay at my day job in telecommunications. I worked for a great company who then laid off everyone in my department in my state.
So now what do I do? How do you find a full time job when every 7 weeks my Remicade infusions make me sick for 5 days. I’m trying not to get depressed but with financial burdens surrounding us it’s really hard to stay upbeat and positive.
Thank you for inviting us to share our stories. I welcome any suggestions.
Kim Wyatt says
oh, in my previous post I forgot to mention that my pain and fatigue are so much harder to deal with at 49 years of age than 32. In my 30’s I could sit down and rest and get up and go a little while later. But now, I have days where I can tell anything, even a trip to the grocery store or walk around the block is going to be all I can do. Now, If my colitis is flaring I can’t eat till I run my errands, and if it’s hot or cold out my joints will hurt. And recently my hands shake a lot, so its hard to do things even tie my shoes. And of course starting last summer I have a new and exciting symptoms of paresthesia that seems to happen anywhere, hands, face, legs, inside my mouth tongue and throat and weirdly inside my ear. My Dr says that it could be a vitamin deficiency or be caused by pain meds or my least favorite, cranial nerve inflammation.
Rosalind says
Lucky you! Optimism is no pathology. It’s a gift especially if it continues through your health challenges. I think that worry is natural and sane (given your situation) but resilience, bouncing back and going on, comes from luck & willpower.
Rosalind says
Thank you for sharing.
Rosalind says
OH – just saw this. Yes, it does get harder, doesn’t it? I don’t have answers but I do believe that we all need support in living with this — and a place to be creative about what we’re doing to manage it all, including work, health & our spirit. That’s why I coach others – I’ve seen what a difference it can make i people’s lives. What do you do to get the support and input you need?