Building a Career as a Lupus Warrior
Last updated: February 2021
Health Union did a Lupus In America survey that revealed: "More than 6 in 10 people with lupus feel their lupus interferes with their ability to work." I have felt insecure about my job security during several flares. However, I have been fortunate to have employers who understood and supported me during my worst flares.
Here I will share my 3 principals on building a career as a lupus warrior. Although my perspective may only be relative to those with office/desk jobs, believe that you can still build your own version of success as a lupus warrior.
In my diagnosis story, I spoke of the power of vulnerability I discovered as an adolescent. Today, as a mid-career architect, I still hold vulnerability about my condition at a high value. Whenever I have changed jobs, I made a point of having a conversation with my future employer about my disease, the limitations it causes me, and my needs. I made sure to make it clear that there will be days while I might "look good" to them, I am not feeling right inside, and I need to take a sick day. If the employer wanted to hire me because of the professional values I offered, they assured me that they would be accommodating and flexible towards my needs.
The principal of vulnerability has served me and allowed me to build a successful full-time career amidst flares, pain, fatigue, and, worst of all, chemotherapy.
2. Open and honest communication
When I wrote about migratory joint pain, I explained how inflammation moves around in my body from the left wrist to the right knee to the left hip. Let's say I wake up, and the pain is in my knee. I can't walk/drive to the office, but I can still sit at my laptop and work a full day from home. Because my employer is already aware of my condition due to vulnerability, I ask for a flexible day and work from home. To set the expectations right, I will give them a heads-up that my condition is unpredictable and request flexibility for the upcoming days. Now, if the next day, the inflammation moves to my wrist, and there is no way I can hold a mouse, I take a sick day and rest.
Open and honest communication allows me to rest and heal without being stressed out about, "what is my employer thinking of me?"
3. Not being a victim
Lupus can cost many lost work hours. The Lupus In America Survey revealed 16 percent of work time was missed in 7 days among the people who took the survey. Lost hours and a reduction in productivity can cost people their jobs. If you need to take time off because lupus is forcing you to rest, instead of giving up on your career, consider everything that can help you stay professionally active. These can be:
- Educating yourself on the laws that protect you. These will be ADA (Americans with Disabilities Act) and FMLA (Family and Medical Leave Act). Visit this article for further explanation.
- Find a career that supports your condition rather than confining yourself in a situation where your disease defines you.
The most important perspective to keep in mind is building YOUR best life around what you CAN do, rather than letting the limitations of a disease define what you CAN'T do.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?