Chronic cancer in the workplace

ET fatigue and other symptoms can create problems for
workers with chronic diseases.

How many people reading here have quit working, taken early retirement, changed to less stressful jobs, or cut back work hours due to ET? I've done All of The Above. And I'm not aone.

The MPN Research Foundation shared a story from the Minneapolis Star Tribune about the plight of acute cancer patients for whom Americans with Disabilities Act protections are inadequate. The story touches on the complex problems cancer treatment poses for workers and employers: Some workers come out of cancer treatment unable to do their jobs, some workers need more than the 12 weeks of unpaid leave the ADA offers, and some patients are fired at the end of their leave period, losing their health care insurance. This can be financially disastrous for patients who want to work, but it's also difficult for employers who have obligations to meet, and have to hire interim help or train new employees.

Working is even more complicated for chronic cancer patients like those of us who have ET, especially younger ones. Federal work leave requirements allows us to take time off to get used to a new chemo or medication. (I took a week off work when I started hydroxyurea. Even though I was only working part-time by then, my employer was very supportive.)

But most of us generally want to keep working as long as we can. One reason is that anything less than full-time employment to age 66 cuts into retirement benefits. I retired three years before I was eligible to receive full Social Security and lost 25 percent of that income. You can figure what it will cost you to retire  early using the SSA calculator here.

Part-time work usually results in withdrawal of employee-provided health insurance and less income to purchase ACA coverage, the costs of which are rising faster than wages. Some states are now implementing Medicaid work requirements, which means patients will have to prove they are unable to work, often difficult for patients whose doctors pooh-pooh symptoms.

The MPN Landmark Survey (2016) looked at how ET affected workers. Fatigue was the most common symptom reported, and both the disease and side effects of chemo or other drug therapy can be culprits here.  ET fatigue is not just feeling sleepy or tired. It may come with inability to focus or concentrate, bone aches, or physical exhaustion.  As a result of symptoms, the Landmark Survey reported that 30 percent of ET patients reduced their work hours. Another 11 percent left their jobs voluntarily. And, among those still working, 23 percent stayed home an average of one to three days in any given month.

The disease's toll on patients is real, and the effect on the workplace is measurable. It is going to hit younger people, who have to live longer with the disease, harder than those diagnosed close to retirement, and it will hit single people without a spousal income harder.

This picture will vary for patients outside the U.S., depending on national work and health care laws.

A final aspect of ET and the workplace is the desire we all have to be useful and productive. Work allows us to be with other people, broaden our understanding of the human condition, and to take pride in our abilities. For many of us, our primary identity lies in our work:  Think how many times we introduce ourselves by what we do.  Leaving that identity takes a toll on self-esteem.

So what's to be done? How are you coping with working? Or with not being able to work? How do you deal with lost income? Or a lost sense of usefulness? What safety nets are available where you live?

Let us know here or over in our Facebook page (link at top right).

Be well!

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