According to the CDC, an estimated 62% of adults with arthritis are younger than 65 years old[i], which means that the majority of people who are living with arthritis (including RA) are in their prime working years. Achieving a work/life balance is hard enough, but it becomes exponentially more complex when you layer on an unpredictable chronic condition that may require a great deal of time to manage symptoms and treatment.
My work life started early with babysitting and waitress jobs as a teen. It morphed into a great career that was challenging and rewarding but often required 70+ hours a week and frequent travel. While I know many people with RA who successfully work full time while managing busy lives and families, the balance in my life shifted eight years ago when I was diagnosed with RA. Frequent fatigue, flares, multiple joint-replacement surgeries and recovery periods and resistance to treatment plans all conspired against my ability to sustain my fast-paced career.
While the RA/workplace balance is indeed a tightrope, I found it can be navigated with the three-pronged approach of the support from your rheumatologist, your employer and your community.
The first key component for me in navigating this tightrope is a good rheumatologist. Clearly discussing your career with your rheumatologist will help you set and meet realistic goals, especially in these important areas:
- Creating a treatment plan together for optimal disease control that also meets your work restrictions. For example, is an occasional infusion more convenient for you than more-frequent injections of a biologic medication? Some treatments may require time off from work which is something to consider.
- Providing professional guidance on workload. Your rheumatologist is an excellent resource to help determine if workplace stress is a factor in your disease activity and can help you make decisions about your employment to improve your health. This might mean seeking a less-demanding position or even changing from a full-time to a part-time position.
- Supporting a decision to leave the workplace due health reasons. Because of the great treatment options now available as well as aggressively treating RA at an earlier stage, many people can enjoy long careers. However, should you need to leave the workplace to concentrate on your health and manage your RA as I did recently, your rheumatologist will be critical in documenting this for extended leave requests or disability claims.
The second crucial part of the equation is, of course, your employer. As reported in a New York Times article[ii], laws protecting people with a chronic illness “are thin and somewhat vague.” In addition, you have to be aware of—and comply with—your employer’s specific policies on attendance and sick leave. While some people choose not to disclose they have a chronic illness, at some point you may need to ask for accommodations, so it’s best to have an understanding of the laws and policies that apply to you. At my last job I was in the enviable position that the Human Resources Director also had RA so she had a first-hand understanding of my situation.
Your employee manual should detail company policy. Two important laws that affect the situation are the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA). Both apply to companies of a certain size (the ADA to companies with 15 or more employees and the FMLA to 50 or more employees), but smaller companies may adopt some of these guidelines as well.
- The ADA provides certain protections from discrimination against people with disabilities and the framework for accommodation in the workplace. Getting your personal RA situation defined as a disability can be a challenging endeavor. However, my experience is that if you ask for a reasonable accommodation because of an illness, your employer will try to work with you. The key here is to be reasonable. If you need to come in half an hour late because you have a physical therapy appointment, your employer will be more inclined to work with you if you offer to stay late to make up the missed time.
- Generally the FMLA provides for 12 weeks of unpaid leave due to your illness or if you need to care for an ill loved one. Company policy may require you to use up any paid leave prior to applying for FMLA.
For various reasons, I made the decision not to disclose the full extent of my RA condition until I left the workforce. Until that time, I dealt with the situation on an as-needed basis – such as, “I need to have knee replacement surgery.” Your decision is also a personal one and should be made based on all the factors that affect you. I can only say that from my experience that being as honest as you can with your employer may help pay dividends.
As a disclaimer, this is not legal advice. This is general information that I’ve learned from personal experience. You should discuss your situation with a legal professional if you have any questions.
The final piece of the puzzle is one that sometimes gets overlooked, and that’s community. Connecting with people who have faced similar challenges can be very empowering. It can lead to valuable sources of credible information and resources that you need to navigate balancing work and living with RA. I encourage you to build your own community and “go-to” resources to help you on your journey. One of my favorite sources is JointDecisions.com because it is specific to understanding and managing RA from the patients’ viewpoint. It’s an important resource I use.
Your rheumatologist, your employer, and your community – all are essential components to finding that critical RA/workplace balance. You should use all of them to your best advantage.
This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.