Last week I mentioned my having to make adjustments in my work life due to having lupus. Working while having lupus can be a challenge. For me and many lupus patients, physical, mental, and emotional stress can trigger flares.
I began working in the ‘real world’ three years after my diagnosis. Through working campus jobs, I learned that I needed to spend less time on my feet, so I only look for desk jobs with minimal travel.
My first job was stressful, but I was able to work. It was a fast-paced, corporate job in NYC requiring long hours and some weekends. Not at all unusual for a job right out of college. I kept up with my doctor’s appointments and medications, but it seemed that the stress of the job caught up with me.
When I began to have flares, the joint pains I experienced in college were not the major issue, but rather fatigue was the new manifestation. This was fatigue that felt like I was chest high in thick mud trying to move. Lifting any part of my body was extremely difficult, and impossible on some days. My rheumatologist wrote letters to my employer to inform them that I needed to work from home most days of the week. That soon turned into working from home everyday, and eventually not working at all.
Getting ever more familiar with lupus and my body from these experiences, and speaking with my doctor, I knew I needed to take care of myself and change what I could to keep healthy.
Through this post, I thought I’d share my thoughts/tips on how to deal with having lupus and facing the difficulties that tend to come up around employment.
- Get health insurance!
You can’t manage lupus properly without having access to medical care. While I am all for natural remedies, make sure you are working within the medical healthcare system as well and letting your doctors know ALL of the medicines and supplements you are taking. You never know if there will be interactions. There is too much involved with lupus to play around with people who are not familiar with the disease or to not take medicines that can help you avoid major damage.
There are many ways to get health coverage now even if you don’t have a job or make much money:
- Employer-based private insurance programs
- Other group policies: When I was in between jobs, I joined a freelancers union where I was able to get a similar insurance plan that I would have gotten as a salaried full-time employee. While it wasn’t the creme de la creme, it ensured that I was able to keep up with my doctor visits and medicines
- Government programs: Read up on Affordable Care Act and Medicaid
Read about each plan and choose the best one for you. Based on your experience with lupus (everyone is different) you may need to consider how many specialists you need to see regularly, and the co-pay associated with these specialists. You may also consider a 90-day program for prescriptions if you have a lot of medicine that you need to take regularly. It may save you a little money. You may also consider costs of visits to an ER or hospital stays, lab tests and the like. It is a very complicated healthcare system, but the more you know and keep tabs on how you fare month to month and year to year, you’ll find that these annoyances will become a snap for you to tackle.
- Determine how you will work with human resources, your bosses or employees
You are not required to disclose your disability status when you interview or while employed on the job. If they ask you before you are hired, there are ways to handle these illegal questions. There are anti-discrimination laws that protect you from not being hired or being fired due to disability. You may not trust the organisation you work for, or the people who work directly with you. I’ve had experiences on both sides where I’ve not disclosed my health issues and where I have disclosed. Again, everyone’s experience with lupus is different, but here are a few tips based on what I’ve experienced:
Trust your gut.
How do people treat each other in the office? Trust your feelings and seek out appropriate counseling to find out your best bets for surviving this culture.
That said, use your sick days if you have them!
No one needs to know why you are out sick. Consult your HR manual to find out how many sick days you have and when you may need to get a note. For example, if you are out for more than three days, you may need to get a doctor to confirm that you have been ill and under their care. Again, the note doesn’t have to say why you were ill.
Find an ally
If you feel that you can trust the people at work (and this includes your boss), consider letting them know, especially if absences become more frequent and affect your work productivity. Depending on the type of job you have or position, HR may need to become involved. Again, consult an outside source to make sure you are protected from any unlawful termination.
Take it easy
Stress is a normal part of working. Whether it’s emotional, physical or mental, any kind of stress can cause your body to retaliate and lash out on YOU! Make sure that you do not bite off more than you can chew, or at least realise when you have before it throws you into a tailspin.
Take time away from your desk to do something nice for yourself and decompress. Sometimes it’s hard to get away, but even if you need a trip to the bathroom for a breather or if there is a conference room or lunch room you can sit in, a little separation from all the activity might be a good thing.
Don’t get involved in other people’s problems to the point you take on their problems as your own.
If you have relationships with your coworkers that turn into friendships, you may get wind of things that might make you stressed-out for them. Sure you should take care of your friends and be concerned about their welfare, but make sure that it’s not at the expense of your own health and well-being.
Practice stress-relief tactics.
Meditation or deep breathing can slow your heart rate and help your body escape the fight-or-flight response which could cause your body to begin its lupus attack. There are yoga and tai chi classes that might double your stress relief by providing gentle movement (if you have things like joint pains) as well as mental stress relief. Check locally to see what might work for you.
If you are a student
Your school may have resources for disabled students that you can take advantage of. For example, I registered with my school’s office of disability services to have class notes typed up or recorded for me in case I couldn’t write or type myself or was unable to attend class due to illness. Now…again, I was in college in the 90’s so not everyone had a laptop or phone so hand written notes were normal, and lectures were not available online. You may not need these services in the same capacity as I did, but you should still register and find out what your school might be able to make available to you. You may need extensions on assignments and they can help you arrange with the proper parties to get things done so that you graduate in as normal a time frame as possible.
Consider letting your professors know Less of a touchy situation than telling your boss, letting your teachers or professors know what’s happening with you might also be helpful. I didn’t tell a professor what was happening to me and, because of the medicines I was on, completely passed out in the front middle row. That was super embarrassing for me and completely unintentional. While students fall asleep in class all the time, at least they’d know that you weren’t sleeping because you were partying all night. I was very behind in his classes and ended up needing an extension to finish his class on time, so building a relationship might be a good way to keep up.
Here are some resources I looked up for more information on this topic:
- Job Accommodation Network (JAN): www.askjan.org/media/Lupus.html
- Hospital for Special Surgery – Lupus and Employment Rights: http://www.hss.edu/conditions_lupus-employment-rights-knowing-options.asp#.VXo1_mDFtBw
- Lupus Foundation of America- Employment, Disability and Legal Issues: http://www.lupus.org/resources/employment-disability-and-legal-issues