Emily started the call by saying she wanted to explore her new limits and what that’s doing to her. She’d been keeping an activity log since the last time we spoke and was surprised to find that she has 4 hours of good ‘battery power’ on her best days. She hadn’t realized the profound changes that lung sarcoidosis was imposing on her life. She’d always been proud of how much she could get done particularly in her job as a senior manager in a large banking system where she’d risen through the ranks by being the ‘go to’ person. “I was Ms. Fix-it “, she laughed, happy in the memory. Emily was no stranger to chronic illness. She’d already been living with Crohn’s disease for 20 years. Crohn’s, however, had created only mild bumps in her road. When symptoms got bad, she would temporarily increase her meds, ramp up her stress reduction techniques and, if necessary, take a day or two off from work. She thought that sarcoidosis would be more of the same. It wasn’t.
She was completely unprepared for the extreme exhaustion and breathing problems that caught her off guard when she least expected it. When medication didn’t improve her condition and she felt worse, her doctor suggested a six month leave of absence. Emily assumed that this time away from work would allow her to get better quickly. She expected to use the time off to create a return to work plan that would ease her back into her life as she’d known it. She was certain in her belief that with the same hard work she’d always relied on, she’d return to work with the right modifications.
But six weeks into the leave, she was barely functioning and her symptoms were getting more intense and debilitating. Now, instead of solving everyone’s problems, Emily’s most pressing concern was her shrinking life. She felt isolated and lonely but was stumped figuring out what was possible for her to do, what to commit to, where and when to say yes or no to those she loved and wanted to be with. This was new territory for her. She’d never had to make such choices before and found herself saying no to everything. A physically safe but emotionally terrifying move.
I knew she wanted a list — 10 Things To Do to meet expectations when you live with Chronic Illness. I don’t blame her but it’s not likely to help.
Emily’s situation is all too familiar. When I was 40, I’d been living with multiple sclerosis for over a decade. I had a husband, 2 children and a demanding career. It was all relatively ‘manageable’ until new symptoms led to a diagnosis of ulcerative colitis. But now, this disease was much more intrusive and unrelenting for me. It put me in a constant state of high alert around my unpredictable bowels and left me exhausted beyond anything I’d ever known. It wasn’t long until I was under performing in every part of my life while barely getting through each day.
l left my job – – it was the only choice open to me – – and put whatever energy I had into my family and surviving. I wish I could say that I did this with clear intention but I’d be lying. I was out of my league. I was as unprepared as Emily and so many who face increasingly debilitating health. Looking back, I can see that reducing the pieces I had to juggle made it easier to prioritize and lowered the level of conflict and guilt around what I could and couldn’t do. I’m not saying that those lifestyle changes improved my health. Nor did it eliminate the deep sadness and frustration I felt around my diminished capacity. But it made it more tolerable. And that gave me emotional space to face the changes in my life.
When I first started working with people living with difficult health, I thought that the solution to meeting expectations, your own and others, was to prioritize and plan. But I’ve learned that it’s not so straightforward or simple. Do you find yourself in an intense internal battle around making and meeting commitments? Does this conflict put added burden on your limited resources? Is it developing into a stand off between your lifelong values and beliefs and your current state of being?
Emily knows that she’s no longer that person who can say yes to everyone. But what isn’t clear is, who is she now? She’s described it as a puzzle with misshapen pieces that don’t fit together. When chronically difficult health transforms your life, it’s a challenge to fit the pieces together so they make a whole again. It can mean putting aside or letting go of pieces that no longer fit, finding new ones and maybe creating a different frame. It’s like you’re building a new internal foundation that allows you to adapt to and develop your capacity to live with the stuff that’s outside of your control. This foundation builds resiliency and, in this world of chronically difficult health, we need resilience more than ever.
Have your beliefs and values about yourself changed since facing the challenges of chronically debilitating health? How is it impacting your ability to spring back and adapt?