Your Guide to a Lupus Workday
Most people can take a sick day when illness strikes and pushing through their workday is more than they bear. But for those of us with lupus, that kind of illness can be an ongoing battle. Employers, particularly those who don’t understand the disease, may be less than accommodating and perhaps even question if you really are too sick to work.
With a disease that attacks invisibly from the inside, in seemingly random, unpredictable ways, how do we continue to keep up with our jobs and deal with overwhelming health issues like heart, lung and kidney problems? We are warriors, but we are also human and there are days that getting showered, dressed and out that door feels like taking on a triathlon.
Fight a Good Fight
There are things you can do to make your workday easier with lupus:
- If your job requires sitting for long periods, make it a point to get up and walk around every hour. Walk to the water cooler or simply move around and stretch, but remember that sitting at a computer for several uninterrupted hours is one of the worst things you can do for your joints, spine, vision and blood circulation.
- Eat healthy. No fast food or junk food snacks just because it is easier or you are strapped for time. Plan ahead and bring a healthy lunch and snacks as well as plenty of water to drink.
- Revive yourself mid-day with snacks that boost energy. Nuts, baked sweet potato chips and dark chocolate can give a healthy boost to get through the rest of the workday.
- Fight brain fog with some soothing or white noise sounds that block out office chaos. Bring ear buds (if your job allows this) and plug into soft music or nature sounds that block the buzz of conversations and let you hear your own thoughts clearly.
- Know your limits and explore your options. Many of us do not disclose that we have lupus to our employers for fear that it will in-turn affect our jobs or promotions. But sometimes disclosing lupus is something we have to do. If you reach a point where you are worried about keeping your employment, it may be time to explore other job options.
If You Can’t Fight It, Work Around It
Throughout my life with lupus, I have had numerous days where I wept in the shower in exhaustion and pain, cleaned myself up and went into work. Looking back now I realize my lupus flared while I was pregnant and when I was serving as editor of two newspapers — more than a full-time position — so I know the struggle well.
I have had odd things happen to cause me to take time off, like bleeding behind the retina in my right eye, odd swelling and, finally, issues with my pregnancy (my baby’s heartbeat kept nearly stopping), all of which was hard to adequately explain to an employer.
Eventually, my baby’s seizures after he was born, combined with postpartum depression and lupus-related health issues after giving birth, forced me to make a choice. I left the job behind and started over, this time on my terms.
I began to freelance for a different newspaper, from home, and though I still had deadlines to meet, I met many of them wearing yoga pants and a tee-shirt, sitting at my kitchen counter with my baby in my arms.
I know this is not an option with many people’s jobs, and to say it was easy to get enough assignments to pay the bills would be untrue. It was a struggle and took about seven years before I felt I truly made the right choice.
Lupies must think creatively, like the survivors we are, regarding what lupus friendly jobs we can do that will at least partially accommodate our struggles with this disease.