How Lupus Impacts Work and Career
Last updated: February 2021
Lupus can affect many different areas of a person’s wellbeing. Physical symptoms, emotional stress, and mental health impacts can all take various tolls on quality of life. One area that these issues can affect is a person’s ability to work or to be successful at work. Hundreds of people with lupus replied to our 2020 Lupus In America survey and told us a bit about how lupus impacts their work and career. Some of the interesting responses are below.
Working with lupus
Over 60 percent of people surveyed said their lupus interferes with their career or ability to work. On average, participants said they missed 6.2 hours of work due to their lupus. They also worked an average of 30.5 hours in the past week. This is compared to just over 2 hours of work missed due to reasons other than their lupus. In addition, 54 percent of respondents said that their lupus affected their ability to do their job or reduced their effectiveness at work.
These results show that lupus might play a bigger role than many other life issues when it comes to missing work. Lupus may also impact a person’s ability to work full-time and to the best of their ability.
Lupus’ impact on work-related factors
In addition to direct work-related effects, lupus may also indirectly affect work performance. Stress levels, self-esteem, social support, and attitude may all impact a person’s ability to perform their best at their job.
When it comes to these factors, many responded that their lupus plays a role. For example, almost 40 percent said that they have a hard time managing stress and that their self-esteem is lower because of their lupus. Further, more than half of all participants said they had a hard time asking family, friends, or those around them for support when they needed it. Over 40 percent said their lupus has impacted their ability to stay positive.
All of these factors can play a role in how a person feels at work and how engaged they are in their job. When a person is struggling to manage these issues, it can take a toll on work performance.
How to navigate working with lupus
If you feel as though you are struggling to work with your lupus, there are a few steps that can be taken to help. The first is to talk with your doctor. If you are struggling with the physical symptoms of lupus, such as joint pain, they may be able to recommend a new treatment option or adjust your current plan for greater relief. Additionally, if you are having a hard time coping with the mental health aspects of life with a chronic condition, such as depression or anxiety, they may be able to recommend options or further medical support for these common issues as well.
Another option many find helpful is having an open and honest conversation with a supervisor or employer about what is going on. Of course, not everyone will feel comfortable sharing information within their workplace, however, if you are open to talking with your colleagues or supervisors, any information you share might be helpful. You also do not have to fully disclose what is going on in your personal health journey. Instead, you can start by just letting them know something generally is going on, and that you might need more support.
Outside of your doctor’s office and supervisor, there are government laws that can help protect you in the workplace if you need support. These include the Americans with Disabilities Act (ADA), the Family Medical Leave Act (FMLA), and, eventually, Social Security Disability Insurance (SSDI) if you are unable to work anymore. The requirements for these can be confusing to navigate, but resources like your doctor, employer, or the United States Department of Labor can be helpful in pursuing these options.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?