How I Navigate Professional Life While Living with a Chronic Illness

When I was diagnosed with rheumatoid arthritis (RA), I was terrified that my career was over. These tips helped me adapt my work life so that I could excel.

It started with joint pain and limited use of my left thumb.

Then came the debilitating fatigue that was so profound I couldn’t finish my workday. After numerous tests, office visits, and misdiagnoses, I was diagnosed with RA.

RA is a chronic, systemic form of arthritis that attacks the small joints in the body. This can lead to eventual joint deformity and immobility. I found myself not only grappling with what this new diagnosis meant but also fearful for my job.

I had worked so hard to be where I was in my career. I had dedicated my entire life to working in healthcare, and I was terrified I wouldn’t be able to continue.

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The challenges of working with chronic illness

Workers with chronic illness face unpredictable days and uncertain futures. They may worry about their own health, how their condition will progress, and what this might mean for the future of their employment.

The protections afforded chronically ill workers in the United States are vague.

To protect their health and their jobs, workers must navigate employers’ policies, which may include short-term and long-term disability plans and a patchwork of federal laws and regulations.

A 2009 report by the Center for Economics and Policy Research found that among 22 well-resourced nations, the United States was the only one that did not guarantee workers paid time off for illness.

There are two main laws that provide some protection for those with chronic illness in the United States.

The Family and Medical Leave Act

The Family and Medical Leave Act allows employees to take up to 12 weeks off each year for medical or family emergencies, but pay is not guaranteed. This law provides job security if someone needs to take time off due to illness.

The Americans With Disabilities Act

The Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.

Strategies for working while navigating chronic illness

If you are dealing with a chronic illness, here are some strategies to help you maintain and even excel at your job.

Decide who you’re going to share your diagnosis with

Sometimes an empathetic co-worker can help with productivity. Other times, no one needs to know. It’s your business. Have questions about the Americans with Disabilities Act? Check out the Job Accommodations Network. Is it against the law to discriminate against a disability. For further information on filing a complaint, check out the Equal Employment Opportunity Commission.

Make a schedule — and stick to it

If you need 90 minutes to get ready before work, 3 hours to get ready for bed, or a midday nap, plan for it. Planning appropriately, and generously, can help you optimize your time while at work.

Optimize your body’s ability to function by listening to it.

Take breaks

Even people without brain fog or medication side effects need to take breaks every 1 to 2 hours, especially when working on a big project or working long hours.

Reject the guilt

Lose the guilt when you call in sick because you are really sick. All too often, we tie too much emotion to calling in sick. If you’re really sick, you shouldn’t be at the workplace anyway. You are human!

Find the right fit

When thinking about having a career when you live with a chronic condition, there are certain factors to consider more seriously. Start by taking an inventory of what you need out of a working environment. Ask yourself these questions about the role or career you are contemplating:

• How many hours are required and expected?
• Are hours set or is the schedule flexible?
• Is there sitting, standing, or lifting involved?
• Are you working on a computer?
• Is the workspace ergonomic and comfortable for your specific needs?
• Is the space climate-controlled?
• Is there travel involved?
• Is it possible to take time for medical appointments?
• Are there medical benefits? Is your current care team on this plan?

Schedule for the right shifts

Sometimes it’s not a matter of what you’re doing but when you’re doing it. If you’re not a morning person, don’t work at a coffee shop.

Are your best hours in the afternoon and early evening? Maybe a receptionist role at a dance school is a good fit. Try to find a career where the hours fit your natural sleep schedule or the times of day when your symptoms tend to be the most manageable.

Look into self-employment options

Can you break off and start your own company? Working for yourself has its benefits. Maybe there are freelance options at companies you are considering.

Use adaptive devices and furniture

Upgrade your office chair, splurge on the ergonomic mouse, and adjust your monitors or other equipment to minimize strain on your joints. Here are some great tips from the Arthritis Foundation about creating an ergonomic office space.

Manage your pain as best as you can

Bring your medications, compression gloves, braces, ice packs, heating pads, ace wraps, and anything else you may need with you to the workplace.

If it helps you to be more productive, have it available to you throughout the day.

Check with an advocacy organization

Advocacy organizations may offer resources that are specific to your condition. They may offer support, resources, or advocacy in your area, which may be helpful. I’d recommend starting with Chronically Capable.

Know and respect your limits

If you can’t work anymore, you can apply for Social Security disability insurance. The process is lengthy, and the payments are modest, but you automatically qualify for Medicare health insurance coverage once approved.

The bottom line

If it doesn’t work, change it.

If you know the job you’re in now is not a good fit, it’s time for something new. Change is scary, but staying the same can be terrifying.

There are many ways to have a fulfilling career with a chronic illness. If you are open-minded and ask yourself the right questions, you can find something you love. If you love what you do, it will never feel like work.