A Coach’s Creed: Balancing Work and Life for the Chronically Ill
by amy tenderich
In 1980, Rosalind Joffe was on the verge of landing her dream job with a multimedia production company when she unexpectedly developed multiple sclerosis (MS). Her immediate ambition was derailed, but not her life. She bore two healthy daughters and became a communications professor at Boston University.
Then in 1993, she was diagnosed with ulcerative colitis, which left her weak and sometimes unable to walk. Suddenly, any job requiring her presence on a regular basis was too much. She quit her teaching position but did not want her career to end.
“I still wanted to work, but I had to find a whole new career that would be flexible no matter what my health was like,” says Joffe, 48, who lives in the Boston suburb of Newton. ”Lots of people thought I was crazy. There’s no precedent for people who are sick continuing to work.”
Working from home, she started a consulting/executive coaching business, but that evolved into something even more specialized: a business that helps others with a chronic illness develop their own balance between work and life.
Four years ago, Joffe launched CIcoach.com, offering individual and group consulting. She focuses on living with a chronic illness and the specific workplace issues it presents.
To date, she has helped over 60 people diagnosed with an array of illnesses – cancer, MS, lupus, Crohn’s disease, and of course, diabetes – explore their own altered capabilities and work/life priorities.
“In reality, anyone with chronic illness is dealing with essentially the same stuff,” Joffe says. “Fatigue, frustration, guilt over spending time away from the family. But as long as we don’t talk about it to our bosses or others, nothing will be done about the problems people encounter with chronic illness until it’s too late, and the person goes out on disability.” While a chronic disease used to be considered an aberration, those days are long gone. More than 125 million Americans – and 40% of Americans in the workforce – now live with at least one chronic health condition, according to the think tank Partnership for Solutions at Johns Hopkins University. More than 60 million Americans have potentially life-threatening conditions such as heart disease, hypertension, cancer, arthritis, and diabetes, and nearly 10 million American people continue to work despite a disability.
helping clients connect the dots
Joffe offers an approach that’s a little like “What Color is Your Parachute?” for the chronically ill: through a series of phone calls and “visualization exercises,” she helps clients identify what is possible and agreeable to them in the workplace.
“Each time we talked, Rosalind was able to connect the dots on a lot of things I was saying about what was important for me,” says Mark E. in Minneapolis, a client with MS who works for a large healthcare software company. [Like other clients interviewed for this story, Mark asked that his last name not be disclosed in part because he wants to control who knows about his illness.] “The big ‘aha’ was that being on the fast track to a high-level management position wasn’t really a good fit for me right now. What I needed was more flexibility and less stress.”
Some common missteps occur when people try to ignore their illness altogether, or simply attempt to “charge through it” and perform as if their health didn’t matter. In response, Joffe has developed guidelines on how to discuss your illness in the workplace and any special needs you may have.
After working with Joffe for about six months, Mark E. was able to scale back from a national sales position requiring a 14-hour workday, including a two-hour commute, plus his responsibility for a dozen employees, to a position in business development where he works from home. With Joffe’s help, he was able to do this without losing face at work or compromising his own pride.
“She helped me present myself as a still-valuable employee, who still wants to work hard, still wants a challenge, and is still loyal to the company. I just need to do things differently right now,” he says.
Clients say the magic that sets Joffe apart from other career coaches is her natural empathy and her personal experience working with a chronic illness in the corporate world. Other coaches “don’t get the aspects of being ill, and how it affects your life and family,” Mark E. says.
Jackie V., a 23-year-old school teacher in Connecticut diagnosed with MS fresh out of college, was plagued by a sense of inadequacy. “I was so exhausted all the time, but I didn’t want to ask for accommodations at work. The coaching helped me see that asking for help is not a sign of weakness. I’m not giving in. It’s healthier to remain in work and go about your life rather than stay at home hiding.”
Her talks with Joffe focused about 60% on work issues and 40% on personal matters such as “pivotal relationships” and stress at home. Taking Joffe’s advice to approach her boss with an upbeat attitude and specific compromises in mind, Jackie was “pleasantly surprised” by her colleagues’ reaction. She now works four hours a day instead of eight, and says she feels much healthier both emotionally and physically.
Joffe has had similar results with her diabetic patients. In one instance, a woman was diagnosed following her third pregnancy. She was briefly in diabetic coma, and her husband had begged her to stop working. She was confused and emotional.
“She was basically ignoring her diabetes, and her husband thought stopping work was the solution,” Joffe says. “Through our sessions, she came to the realization that she loved her job. She decided to cut back temporarily, to give herself time to acclimate to living with the disease, but she did not want to stop working permanently.” This client recently went back to work full-time, now confident that she can balance her career with caring for her health and her family.
spreading the word
For many clients, a core issue is disclosure. Who should they tell, and how? According to Joffe, very few people struggling at work due to chronic illness engage the Human Resources (HR) Department. HR simply isn’t trusted, since people assume its members will always have the company’s interests in mind, and they may not keep the information confidential.
“The thinking is, if they know about your condition and they think you’re a problem, they’ll be angling to get rid of you,” Joffe says.
Client Steve D., in his ‘30s and also living with MS, was grappling with the disclosure issue for two reasons. First, “having a secret is very isolating,” he says. Secondly, although his position at a biotech research company in Seattle requires mostly “brain work,” the job description also called for a fair amount of work in a laboratory, which meant hours of standing on his weak legs. His father pointed him to CICoach for help.
“First we talked about the legal issues – what are my rights? And then Rosalind helped me put a positive spin on things, identifying what I can do for the company to still be of value, rather than talking about what I can’t do. Basically, it’s doing a little bit of sales for yourself,” Steve says.
Joffe suggested limiting disclosure on a need-to-know basis, identifying the critical people, and then discussing it with them “in the right light.” The strategy worked, as Steve’s boss was very responsive to his request for an altered schedule. Joffe emphasizes to her clients the importance of finding a boss who is sympathetic and flexible – though, of course, many workers don’t have that luxury.
While Joffe instructs her clients to carefully disclose information about their health, it’s also important that enough people know about any illness in case of an emergency. “Anyone with an invisible and chronic illness faces these issues,” she says. “But as long as it’s continually swept under the rug, we’re kind of living in silos.”
Ultimately, Joffe says, patients have to be their own best advocate. “If we can band together, we can have a voice, which would be really helpful in educating employers, managers, and colleagues so the workplace can be a more supportive place,” she says. “There’s power in numbers – and a lot of comfort around the sense that you’re not alone.”
Learn more about chronic illness in the workplace at:
www.cicoach.com
www.keepworkinggirlfriend.com (Rosalind Joffe’s co-authored blog)
www.partnershipforsolutions.org
http://www.advocacyforpatients.org/
— Amy Tenderich is author of the popular web log www.diabetesmine.com, and coauthor of the valuable book, Know Your Numbers, Outlive Your Diabetes.
