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Lee Shapiro, M.D., FACP, The Center for Rheumatology, LLP, Albany, New York Robert Simms, M.D., Boston University School of Medicine Carol Feghali-Bostwick, Ph.D., Assistant Professor of Medicine, University of Pittsburgh Thomas A. Medsger, M.D., Jr., Gerald P. Rodnan Professor of Medicine at the University of Pittsburgh School of Medicine

 

Coping with Scleroderma

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Running On ... Hope and Resilience!

by Rosalind Joffe, M. Ed. (originally published in "Out in Front," Feb. 2007)

My friend, Trisha, and I were catching up over coffee. She told me that she’s been running on empty – the warning lights are on. Trisha has been going full throttle for the past year, putting all her efforts into building her business. She said that she knows that she’s running out of gas and that it could become a problem.

Rosalind Joffe, M.Ed.She hasn’t been watching what she eats and is gaining weight, she hasn’t been going to the gym to work out and she skipped her yearly check up with the doctor. She knows this isn’t good but she just can’t change old behavior.

She said, “I’d always thought that a car should maintain itself but I found out I was wrong when I actually ran out of gas. I remember yelling at the car, telling it to go when my four year old daughter suggested that maybe we’d run out of gas. I honestly never thought it could happen! Luckily there was a gas station down the road. I didn’t learn though. To this day, I never fill up until it’s almost at empty.”

But Trisha, who turned 50 last year, can manage to run this way and not stall out. She’s healthy and can always refuel to catch up. She’s willing and able to take the risks. Her body and her mind are still resilient.

When you live with a chronic illness, however, you can’t operate with a low gas tank. It’s a slippery slope from ¼ full to empty -- and that can be scary. It’s fear that stops us from trying. Do you skip the trip to Alaska or even the dinner out– reject the big project that’s coming down the pipeline at work – order online rather than ever go to the Mall? Are you afraid to take risks, afraid you won’t bounce back and instead choose to withdraw rather than pursue a life worth living?

It’s difficult to know when you can push yourself harder. How do you decide how much is too much to do? But, I’ve noticed that living in fear can be just as bad for your health as running on empty. We need to cultivate our hope in what is possible. And nurture out resilience, the ability to bounce back from the punches, to keep ourselves in shape, to stay physically and mentally healthy. It’s particularly difficult to maintain mental resilience when your body refuses to comply.

It is resilience and hope that encourages us to take risks that allow us to thrive, not just survive. This gets put to the test every day when you try to hold down a job while living with a chronic illness.


Recently, a client sent me some research done by Marshall Raskind,Ph.D and his colleagues at Schwab Learning regarding how risk and resilience in children with learning disabilities could be predictors of vocational success. I think their findings apply just as well to adults with chronic illness.

Briefly, the traits they identified as critical to risk taking and resilience are:

  1. Self-awareness
  2. Proactivity
  3. Perseverance
  4. Goal setting
  5. Presence and use of effective social support systems
  6. Emotional coping strategies

I’ll bet that those of you who don’t live with either learning disabilities or a chronic illness are saying to yourselves, “Ok, but isn’t this true for everyone, even ‘normal’ people? " Yes. I think it is. It’s just that when you live with a condition that creates even more challenges in life, such as learning disabilities or chronic illness, you have to use everything you’ve got.

As the poker players say, You need to go “all in”. You’ve got to take risks and cultivate resilience even more than the next guy (or woman). Do you agree? Do you want to improve your capacity for resilience? Email me to talk about the program I'd suggest that can help you develop both.

“Living with chronic illnesses for 30 years has taught me how critical work can be to health and well-being. That's why I'm committed to giving people who live with chronic illness the tools they need to be employed.” - Rosalind Joffe, CICoach.com.

Reprinted with permission.

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