Lupus & Employment
By: Carlene Harrison
When you're first diagnosed with lupus, so many things run through your mind. On top of all the overwhelming shock, there is the question “Will I be able to do the same things I've always done?”. You convince yourself that nothing changes and you can still live the same life you've always known. As much as you try, you can't help but notice the small changes in your life. Physically, mentally, and emotionally, little pieces of you begin to change. You make minor adjustments, but still, carry on as if nothing happened. You work, go to school, spend time with friends. You live. Afterall, you don't look sick, so you try not to be...sick. And then, smack! You hit a wall and one day you just...can't.
This was my experience and I'm sure it's very similar to many other people also diagnosed with lupus. The initial denial that accompanies a lupus diagnosis is powerful. You try to prove to yourself that you're invincible. But the fact remains, you're not. Sure, you've got the strength of mountains and you are carrying the weight of a chronic illness, but you have limits and there will be some changes.
About 2 months after my official diagnosis, I received my first dose of how things would begin to change. This was a time in my life when I was living as a student and holding down a full-time job along with a volunteer lab opportunity. I had a full plate. One Friday evening, I went to sleep with a nagging headache. My body was achy, I had a fever, and even my throat hurt. These are all the telltale signs of a Lupus flare. After a very uncomfortable night, I awoke Saturday morning prepared to start my 7 a.m. shift at work. I dragged myself out of bed. Showered, got dressed, and left to do a full day's work. In the 15 minutes it took to arrive at my job, the unthinkable happened; I got worse. I could barely exit my car. I walked into work and my boss let out an empathetic shout “You look terrible!” Exactly what I wanted to hear. One of the major aspects of my job as a Security Officer and Concierge was to patrol the entire facility. I could barely even walk. Thankfully my boss saw that I was in distress and dismissed me for the day. The thing is, back then I didn't say “Thankfully”. I was absolutely mortified. I had never been sent home from work a single day in my life and in the entire two years I had worked there, I had never missed a day. I freaked out! I swore I'd lose my job and I didn't like the thought of that. I spent the whole day rushing to get better but failed. Not only did I miss that first day, I was also unable to work for a full entire week. This was my first taste of how Lupus can affect my life and most importantly, my job.
I spent many hours that week researching local and state employment laws praying I wouldn't get fired. What I found was that in my state the laws worked to protect the employer more than the employee, but Federally, I had protections and accommodations could be made. Lucky for me, my boss was very understanding and worked with me along the way. This is not the case for many people with Lupus. Just as our disease presents differently between people, Lupus also affects our lives in a myriad of ways. The one constant we have is the legal protections afforded to us.
In my recent research, I found that Lupus is now considered a disability federally. This is no small feat, as many have fought for years to have their illness recognized for what it was. Through my research, I’ve uncovered some amazing resources for those with lupus struggling to find their way in the world of employment. A very helpful resource is the Disclosure Resource Guide, available via https://askjan.org/topics/discl.htm
AskJan.org is an amazing site that seeks to help people with disabilities navigate the tricky world of employment and education by educating them on their rights and different options available to them. The Disclosure Resource Guide is a very helpful list of resources for youth and adults with disabilities. It has tips for interviews, the Dos and Don’ts of Disclosures, and publications with our rights and responsibilities. The AskJan.org site also offers resources about workplace accommodations, that specifically address Lupus as a disability.
There are also government sites that are extremely useful when trying to learn your rights and responsibilities. One of the most helpful websites I’d found on my search was through the US Dept. of Labor (DOL) site: https://www.dol.gov/general/topic/benefits-leave/fmla. This site introduced me to the Family & Medical Leave Act (FMLA). According to the Labor Dept., The Family and Medical Leave Act (FMLA) provides certain employees with up to 12 weeks of unpaid, job-protected leave per year. It also requires that their group health benefits be maintained during the leave.FMLA is designed to help employees balance their work and family responsibilities by allowing them to take reasonable unpaid leave for certain family and medical reasons. It also seeks to accommodate the legitimate interests of employers and promote equal employment opportunity for men and women.
FMLA has helped me personally and is a protection that is beneficial to both patients and caregivers. There are some stipulations to being eligible for leave. You must have worked with the company for at least 12 months, and a minimum of 1,250 hours during that 12 month period. The DOL site also provides this helpful factsheet with an overview of FMLA: https://www.dol.gov/whd/regs/compliance/whdfs28.htm.
Along with legal rights and responsibilities, we must also consider the reasonable accommodations needed while working. For those with Lupus working in a traditional office setting, there are many environmental factors that could actually harm us and exasperate the conditions of our disease. Some things to consider when discussing compliance and accommodations with your employer are accessories to help you along throughout your day. Discuss if your employer can provide an ergonomic chair, keyboard and mouse. Also, special lighting to assist with photosensitivity issues.
There are so many considerations when dealing with Lupus and Employment. All of our experiences are different. I’ve shared my story but now I want to hear from you. After the jump, tell me about yours!