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woman with balloons overheadMy life did get better after 50. But not for the usual reasons.

Five years earlier, I had surgery to remove my diseased colon (ulcerative colitis), and I started therapy with a new drug for multiple sclerosis that led to remission. By any standard, at age 50 I was healthier than in any of the previous 20 years. I had more energy and endurance, less pain, and better mobility.

If my 50 was atypical, so was 30 and 40.   Only now, with 60 behind me, have I realized how isolating it’s been to be so be different from “healthy” people.

This story begins a few days after my 29th birthday and two months after getting married. While running on a hot summer day, I lost vision and, within minutes, was unable to walk. After several years of vague symptoms and diagnostic tests, getting the diagnosis of multiple sclerosis (MS) was a relief.

But a diagnosis is neither a solution nor a cure for chronic disease. Nor does it help others understand your experience. The invisible and unpredictable nature of chronic illness creates a huge disconnect for someone (like me) who creates relationships through shared experience.

Within three months, I returned to work and to my life. But nothing was ever the same again. No decision — small (should I go to the party?) or large (should we have children?) — was made without consideration of my health.

On my 30th birthday, happily married and financially comfortable, my life looked normal. But I had found my job and career path too physically demanding and switched from a job in media production to the sales side.

When I told a friend about this, she said that she knew how it felt. An appendectomy had prevented her from attending her best friend’s wedding. But this wasn’t a bad week for me, this was the rest of my life. I was stunned and remember thinking, “I’m different now.”

As symptoms increased over the next decade and I continued to make switch back turns, changing jobs to find a good fit, even if I wasn’t clear what that meant. The only advice I got was to stop working, so I could be less stressed. How was that a good idea, since I liked working and it energized me?

I hoped children would normalize life for my husband and me. I was exhausted during pregnancy and after the birth of each of our daughters. But so were all the other moms in the baby group, right? I knew my tired was different, but how to explain this and why? When I shared my concern that I was more tired than ‘normal’ with a new mom friend, she asked if I wasn’t being a bit too dramatic? OUCH. Clearly, talking about how crummy I felt would not be my ticket to social success.

Friends were running marathons while juggling family and career, and I was barely managing the housewife/mom stuff. Work was a respite. But at the end of each day, it felt like I’d run a marathon.

Then, as I turned 40, I developed another autoimmune disease, ulcerative colitis (UC), which, in my case, was even more aggressive than the MS. Many days I was too sick to leave my house, never mind show up at my job, teaching communications at BU. My only option was to leave the workforce. I was a physical wreck, and miserable, to boot.

While others were doing triathalons, moving up career ladders, and active in their kids’ lives, I could not reliably do food shopping or carpools. They planned their futures; we couldn’t plan a vacation. I desperately missed being employed. It felt sad and disconnected to be so different.

So here’s where this story gets happier. At 45, I got rid of my colon, curing the UC, and I started a new MS drug that slowed diseases progression. Ready to regain some sense of ‘normal’, returning to work was at the top of my list. I realized work had to fulfill certain criteria for this to succeed. It had to:

  • be sufficiently satisfying and motivating to keep me going when my health was bad,
  • earn enough money to restore my sense of independence,
  • be sufficiently flexible for my still unreliable body (too many auto immune issues and parts that were broken beyond repair).

By 50, I had reinvented myself. Taking from own playbook, I founded a coaching practice focused on giving people living with chronic health conditions the tools they need to stay in the workforce. Using my own experience to my advantage was transformative. In fact, I’ve gotten even more than I could have imagined.

What’s different now that I’m 63? As my family, friends and community grow older, experiencing what it’s like to live with difficult and unpredictable health, I feel less alone.   I no longer feel like the only one with physical limitations or with a sad tale to share. It’s cold comfort, though, to be part of a community that no one is happy about joining.

Rosalind Joffe is the co-author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, and publishes a widely read blog, Working With Chronic Illness. and can be found on twitter (@WorkWithIllness) and Facebook (ciCoach.com).

 

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The Invisible And Unpredictable Nature Of Chronic Illness was last modified: by

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