Having a chronic illness, like chronic kidney disease (CKD), can provide some new challenges at work, but continuing to work is possible. You may feel hesitant or uneasy because you think you may not be able to work the same as you used to. 

While your fears are understandable, work is a great way to get back into a routine and feel like yourself again. The National Kidney Foundation discusses the benefits of continuing to, or going back to, work with chronic kidney disease and explains your rights to receive “reasonable accommodations” from your employer.*

What are my rights as an employee? 

Many people struggle with asking for help from anyone—much less their employer. With a chronic disease like CKD, however, you may need to learn to ask for help. It is your right to be able to do so without discrimination and/or judgment on behalf of your employer.

Advocacy groups and government officials have fought hard for the rights of people with chronic diseases in the workplace. Laws have been written to offer protection to employees with disabilities, as well as provide guidance for employers. These include the Civil Rights Act of 1964, Rehabilitation Act of 1973, Americans with Disabilities Act (ADA) of 1990, and Family and Medical Leave Act (FMLA) of 1993.

If you work for a company with 15 or more employees, the ADA requires your employer to make “reasonable accommodations” that you might need to work. 

This includes, but is not limited to, the following:

• Making parking lots, bathrooms, and work areas accessible for all people with disabilities
• Having flexible work schedules
• If you request one and one is available, reassigning you to a less strenuous job
• At your request, assigning any of your non-essential tasks to other employees

The FMLA can be helpful if you need to take time off due to your illness. If you work at least 20 weeks of the year for an employer with 50 or more employees, you qualify for 12 weeks of unpaid, job-protected leave for medical reasons. Your spouse, children, or parents may also be eligible for this at their workplace if you need them for care or transportation.

What will happen if I begin, or am in, treatment?

When you’re in treatment for CKD, you may keep working full-time, or you may want to switch to a more flexible or part-time schedule. Depending on when you receive treatment, such as dialysis, you may need to change your hours or need a clean and private space at the office.

Likely, your employer won’t know what changes at work are necessary for someone with CKD, so it’s an important conversation for you to proactively lead.

You’ll need to explain to your employer: 

• how it may affect your abilities, 
• how much work you can do, and
• how much time off you may need.

They will likely also be curious about what this means for your health benefits. Your doctor or another member of your care team can talk to your employer about this for you.

Some other topics that you may want to talk about with your employer include the following:

• Any changes to your work schedule for dialysis and/or healthcare visits
• How you’ll make up time off for medical reasons
• What your physical limitations are if any
• What to do if there is an emergency

What are some other benefits of working? 

Besides any financial benefits, continuing to work, if you can, can be a positive activity for both your physical and mental health.

These benefits include:

• raising your self-esteem;
• getting you into a stable routine;
• giving you time to interact with people; and
• regularly getting you out of the house. 

While these benefits may not seem like a big deal, a positive activity and a consistent routine can help you take your mind off your illness and improve your mental state.

Where can I get help or learn more about my rights if I think I’m being discriminated against?

The Equal Employment Opportunity Commission (EEOC) recommends going through the channels set up at your workplace. If you are unable to get an answer or solution from your company, other avenues are available with your city, your state, and the federal government.

On the local level, most cities and towns have departments designed to help with discrimination in the workplace. Common names include the Department of Human Services, Department of Health and Human Services, Office for People with Disabilities, or something similar. On the state or federal level, you can reach out to the Human Rights Commission, the Department of Labor, or the EEOC.

What benefits are available if I can’t work?

Once you’ve connected with a social worker, they will be able to provide you with information on financial assistance programs, including qualifications and how to apply. The U.S. Federal government programs run by the Social Security Administration (SSA) are the most well-known: 

• Social Security Disability Insurance (SSDI): This program pays a monthly sum to people who are unable to work for a year or more due to a disability. The amount you receive depends on how much time you worked before your disability and how much you paid in taxes while you were working.
• Supplemental Security Income (SSI): Monthly payments from this program are determined by each individual’s financial needs, not by the tax they paid. Local and/or state benefits can be used to supplement this amount.

Additional information can be found in the National Kidney Foundation article on “Working With Kidney Disease: Rehabilitation and Employment.”

*National Kidney Foundation. (2019, June 10). Work and Kidney Disease: Your Right to Special Accommodations. https://www.kidney.org/content/work-and-kidney-disease-%E2%80%93-your-right-ask-special-accommodations