The Board Chair opened with a ‘warm-up’ exercise asking us to share a recent event in our lives. The first person to speak said that worsening arthritis had forced her to stop yoga and give up the daily long walks she loved. Another spoke of his recent and unhappy retirement due to increasingly difficult pain. And another shared that she’d cancelled a trip because a cold had left her too weak to travel.
Yes, there were stories of work successes or exotic trips. But the majority of ‘shares’ were about difficult health.
I was surprised. These aren’t the typical topics of conversation in a professional setting. Looking around the conference table, I saw mostly 60 – 70 year olds and then I understood. Sharing frustration, even sadness, over the loss of what you can no longer do or the pain you live in is what this group does.
I’m finding that at this ‘time in life’, people seem to expect health problems to emerge. And often they do. At 68, I’m in the ‘norm’ again. After 40 years of feeling alone in my experience of debilitating waxing and waning symptoms, I’m no longer so isolated. It’s cold comfort.
When I was 29, I lost vision in one eye and couldn’t lift myself from bed. The diagnosis was multiple sclerosis and I had no idea what it meant. The only person I knew who talked about their body not working right was my Grandma.
Married one month and in a career I loved, my picture for my future was happy working wife and mother, the ‘normal’ expectation. But when I veered from that path, I could never fully return. I was fortunate to have 2 children and continued working for another decade. But while my life looked normal, my body wasn’t. Sharing I was tired, numb or in pain only brought pity or a blank stare. Who could understand what wasn’t visible and they hadn’t experienced? It was lonely. When I developed another autoimmune disease, I was forced to leave the workforce and the life I’d clung to. This set me even further apart from my group.
So I understood when my client, Kris, described how she felt stuck in her 20’s for the past decade. She’d just finished her Masters and was planning her wedding when she developed unexplainable fever and swollen knees. Diagnosed at 28 with Lupus , she became too sick to do anything more than the basics. She lost her job and cancelled the wedding plans. She withdrew from friends and family who gave unsolicited advice – not from shared experience but based on hearsay. She drifted from her childhood friends who were busy with work and children. She and her boyfriend sold their condo to rent an apartment they could afford on one salary. “I became a hermit. The only person who even remotely understood was my boyfriend because he was living with this, too.”
Fortunately, although she still has debilitating symptoms, Kris’s overall health has been improving. She wants to work in some capacity but doesn’t know where or how to begin.
The worst for her was the feeling of helplessness. The past 10 years had drained her of the resilience she needs to restore at least some of what she lost. Like many of us who have unexpectedly hit rock bottom, she has to start by rebuilding her foundation so she has the resilience and the optimism to tackle what’s ahead.
She set what she believes are achievable goals to stay focused and motivated:
- To earn enough money to offset out of pocket medical expenses
- To expand her social life and community.
With a sigh, she said, “I’m not starting at ground zero but it’s pretty close.”
Like Kris, my health gradually improved enough to rebuild a life that approached ‘normal’. I found regaining ‘my life’ meant learning to set limits and expectations that would frequently change and to be comfortable with that. I’d be a carpool parent, committee member, party host only as long as I could set and live with my limits. Figuring out what and how to re-enter the workforce was more challenging and I learned a lot along the way.
I couldn’t shake my sense of isolation, though. There was this chasm between me and my peers because, unlike the expectation for someone my age, I was still functioning with a limiting body.
This sense only shifted when I realized that my idea of ‘normal’, society’s norms, was keeping me from living the life I wanted. Simply put, norms are the stages of adult development, age-related events, that a person moves through. They function as unconscious guideposts for what we can expect for ourselves.
But what happens when your health is unpredictably debilitating and certain life events are beyond your reach? When you can’t meet those norms?
There’s no road map out, no magic bullet for navigating this. But experience has shown me the high value in developing your capacity to:
- Acknowledge, say hello rather than shut down, your hopeless thoughts and feelings.
- Design your own compass and set the destination based on where you are now and where you want to be.
- Remember only you get to set your ‘norm’.
I’ve seen countless times how these 3 steps can be fundamental to living the life you want with difficult health. This is true whether you’re 29 or 70.
Don’t you want to develop your capacity to be a more expansive you?
In case you’re wondering how ‘alone’ you really are in this life with chronic illness, look at these appalling statistics. According to a report by the Center for Talent Innovation:
- 30% of employees in the US have disabilities, while only 3.2% of employees with disabilities self-identify as having a disability to their employers.
- 30% of people with invisible disabilities have experienced workplace discrimination relating to their disability, while 44% of people with visible disabilities have experienced workplace discrimination.
- 57% of employees with disabilities feel that they cannot advance in their careers and have been “stalled” from promotions in their workplace.
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