Just Work: What If You Get Sick?

Seven years ago, at age 50, I settled into a challenging and rewarding job. After years of struggling to make ends meet -- raising a daughter as a single parent, patching together various jobs, and putting myself through graduate school -- I started working as a psychologist at a community health center in Brooklyn. Finally, the arch of my life was beginning to bend toward success: from a working-class background to a more solid middle-class future.

Then, just as I was beginning to exhale and really celebrate my accomplishments, I got sick. And I got really sick. Four years ago, I was diagnosed with breast cancer. On a warm spring day in New York City two years ago, my doctor told me that my cancer had progressed to stage 4, that it had metastasized to my lungs, and that I could expect a shortened life span, with perhaps months or years to live.

A million questions ran through my head. Not the dreamy questions like, will I see my daughter graduate from college or will I make it through another Christmas? No. The questions running through my head were those that anyone else who is living and working with cancer has to ask themselves. Will my health insurance cover me if I move to be closer with family and friends? How will I afford to live if I can't work? If I can't work and I lose my health insurance, how will I pay for the treatment that keeps me alive?

You see, "getting better" is not the first battle you face when you get sick. With healthcare tied to work and inadequate short-term disability options, the first battle is financial. For many people with terminal illness, full-time work is no longer an option. For most jobs, that means the paycheck stops and the healthcare drops. Unless you have a special arrangement with your employer or you can live off of a family member, the options for how to live out your remaining months or years can be grim.

I am better off than most. My union has helped me negotiate a work balance that allows me to fit in my weekly, half-day hospital visits for treatment. And my healthcare coverage provides real coverage. Unlike so many other cancer patients, I don't have to deal with high deductibles, merciless HMOs, or an insensitive employer. For the most part, I can just concentrate on killing the cancer cells -- and living. Good treatment has kept me feeling good and I continue to work and be productive.

That's how it should be; managing a job while battling the disease is hard enough. When John Edwards was criticized for not "slowing down" after Elizabeth got sick, I wanted to shout out, "Most Americans don't even have that choice!" Far too many don't even tell their employers for fear that they will be fired. Although it would be nice to slow down, or have a spouse take over, that's just not the reality for some Americans like me who are living with cancer.

On an average day, I leave my home at 7 a.m., commute by subway one hour to work, see around nine patients a day, supervise trainees, spend a couple hours completing paperwork, and then I return home after 8 p.m. to exercise, cook dinner, and then prepare to do it again. On Thursdays, I stop off at Roosevelt Hospital in midtown Manhattan where I receive chemotherapy treatments. Just like so many others, I am left exhausted, suffering from muscle pain and nausea. But it's this work and treatment balance that is key to getting better -- or getting by.

I have much to be grateful for. I have a job I love, a caring family and supportive friends. Many times, my patients are the ones who inspire me to keep going through the workday and fighting for more life. But despite my good fortune, I can't help but think about what I'll do when I really can't get out of bed in the morning. I don't have a substantial pension. Cost of living and education debt make it impossible for me to live off of what I've saved. But most importantly, having my health insurance tied to work means I can't really get sick. And I'm not alone.

Terminal cancer can rob too many Americans of a full life. The least we can do is ensure that the final months are spent in the way the person chooses. It's time to fix our broken healthcare system so that it works for me and for everybody else who is living -- but no longer able to work -- with terminal illness.

Barbara Principe, Ph.D., is a practicing psychologist at the Interfaith Medical Center in Brooklyn, N.Y., and a member of the Service Employees International Union (SEIU) Local 1199. Before becoming a psychologist, she held a variety of positions in the social justice field, including community organizing in Rochester, N.Y., cross cultural counseling in Vermont; and working with handicapped children in rural New Hampshire. In the future, Barbara looks forward to writing more about her experiences living and working while battling cancer.
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Just Work is a series presented by the Service Employees International Union (SEIU) to give a voice to working people to discuss their daily struggles to balance work, afford life, and participate in a more just society. SEIU welcomes submissions to Just Work. Send your story (800 words or less) to [e-mail].

The 1.9 million-member SEIU is the fastest-growing union in North America. Focused on uniting workers in three sectors, SEIU is the largest healthcare union, including hospitals, nursing homes, and home care; the largest property services union, including building cleaning and security; and the second-largest public services employee union.

Comments

[Zina]

Imagine having lupus, a chronic disease that can affect any organ for which there is no cure. It is considered one of the most expensive diagnoses to have. Millions of people languish in the gray area of not being full disabled, yet too tired to work full time.

[Foyt101]

In this country of such excess it's pathetic that we let the terminally ill suffer the way we do.As you said in your essay this system needs to be fixed. We have the talent in big business and goverment to implement a better system.The problem is that the people in a position to do something about the system don't feel the pain because they usually have the financial resources that shields them from experiencing how screwed up the system is.
Something needs to change.....Quick !!

[olivine]

This IS so sad, but why can't anything be done to keep so many people from getting cancer in the FIRST place?The statistics are absurdly high , to the point that every American will need their own oncologist, forget the family practice doc.

[rlehman]

Within minutes of my cancer diagnosis in July I began researching the cost of treatment. With insurance and the negotiated discounts our insurance company imposed on in network providers we were still looking at choosing between a home with electricity, running water and a fridge with food and keeping me alive. For those without insurance there is no choice to make. Pain management at the end of life might be available but treatment for the cancer, not so much. Luckily the 20 minute in office surgery that cost us $2500 (yes, us, not the insurance company) removed the entire malignancy. Unfortunately, I don't believe we will be able to pay that off before my scheduled 6 month follow up on whether or not the cancer has recurred. Even if we could, the appointment is scheduled for 2008 which means our deductible will have to be met all over again.

[BAP18]

We have got to get this changed! Come on, let's talk about some basic rights here: life, liberty, the pursuit of happiness!!!

What has happened to us, the USA?

[fact finder]

Well said and oh so true.