When a healthy person thinks about the challenges of living with a chronic illness, I’m pretty sure that work doesn’t make the list. There are too many other important issues, right? But we know that work plays a huge role in a person’s well being. All the studies show it — and think of your own life.
My health took a serious nose dive when I developed multiple sclerosis at 29. Yet I’ve lived what looks like a ‘normal’ and happy life. I’ve stayed married, raised a family and have loving relationships. The one area that didn’t meet my hopes and expectations was my career. After the initial diagnosis and periodic flares, my time at work became defined by how symptoms affected what I could and couldn’t do. Twisting and turning to fit in the workforce, it became obvious I didn’t fit into the demands of organizational life. When I developed a 2nd autoimmune disease, ulcerative colitis, and became too sick to leave my house, I gave up trying to work. Although I was fortunate that I didn’t need to work to feed my family, I realized that I needed to work for my mental health. I was also lucky because surgery improved my health enough so I could function again with significant limits. But the career I’d pursued for 20 years required physical stamina I didn’t have. I considered going back to school for a different career path. I looked at those options and saw a workplace with long hours and inflexible rules. I feared that I wouldn’t make it through graduate school, never mind hold a job again.
Which is why, 20 years ago, I reinvented myself and developed my own business. I didn’t want to work alone or be my own boss but I didn’t see any options. The work has given me what I want and need most: work I enjoy doing and the flexibility to schedule my time around my health needs.
But not everyone is cut out for self employment and creating a business or has the financial resources to do so. The problem is that finding and keeping a job when you live with a debilitating and invisible health condition is so difficult. A recent study out of Rutgers University shows that these challenges start before the interview. Researchers found that”… employers show bias against people with disabilities by showing interest 26% less often in candidates who disclosed disabilities in cover letters.” (my italics)
“More surprising and troubling to researchers was that the more experienced applicants with disabilities were 34 percent less likely to get responses than their non-disabled counterparts, who received the most interest.” (my italics) Only 34% of working-age people with disabilities were employed in 2013, compared to 74% of those without disabilities, according to studies cited by the researchers. A study on cancer survivors reports, “… job applicants who are cancer survivors are less likely to receive callbacks from potential retail employers than those who don’t disclose their health history.”
And most disturbing of all: “People with disabilities are often told to get an education, get the qualifications needed for jobs,” says Lisa Schur, a Rutgers School of Management and Labor Relations professor and research team member, noting people with disabilities are more likely not to have college degrees. “Our findings indicate that that’s not enough. The gap is greater for people with disabilities who have more education, experience, and qualifications, which is a sobering finding.”
Honestly, that’s not been my experience with hundreds of clients. For the most part, those who are highly educated and have significant qualifications seem to be more employable and to be better able to hold their jobs than those who are not. What do you think?
Have you found it difficult to continue in your job because of bias, a lack of support or the flexibility you need that would allow you to do the job? Have you disclosed before or during the interview?
How has it gone for you?
Wondering about talking about this at work? My Guidebook, Are You Talking, covers the who, what, why and when.