Kristin here from Working Lupie. It is a pleasure to guest blog for The Patient Patient today. Anya and I connected over Twitter and have been sharing our experiences of living with a chronic illness. While our healthcare systems and diseases are wildly different, most of the day to day psychological effects and challenges are not.
Working with a chronic illness is not easy. Many days it takes me an hour to get out of bed, my hands are almost too stiff or too cold to type, or I have to miss work all together due to a flare or hospitalization. But I have to work, because it is only through work that I have health insurance.
There are many internal questions one must answer when working with a chronic illness. Of course everyone’s answer is different, and we may even change our own answers over the course of our illness, but these are questions we must ask ourselves nonetheless.
How much do I disclose to my employer? In my current job my employer is well aware of the fact that I have lupus and the disease is currently active. In my mind, I’m using their provided health insurance and have had an increased absence due to flares, so I feel it is only fair to be 100% transparent. My employer is providing the benefits and accommodations; they deserve to be in the loop. But, I know plenty of people who do not disclose their lupus diagnosis with their work. Their argument is the fear of retaliation (even though illegal, it still occurs and is hard to prove malice). I completely understand because I was that patient once.
There are risks to both choices. If I keep quiet I run the risk of disappointing my colleagues if my health limits my abilities. There is also a continued lack of understanding about lupus by not sharing the disease. If I am fully open, I run the risk of passive aggressive retaliation from my employer, or my own feelings of disease inadequacy. In being too open there is also risk that my employer may not understand why I’m so sick one day, but seem perfectly normal the next. I chose to be open and tell my employer as much as possible. The more I share, the more they understand.
Do we push ourselves to our physical limit or play it safe? Do I pretend to be healthy to accomplish everything I want/required at work or do I hold back to save some of my energy? I’m afraid of not taking advantage of the energy I have, but then using too much energy and being wiped for the next day or two. I think this goes hand in hand with the question on disclosure. It may be easier to budget my energy if I’m fully open with my employer, and not feel pressured to keep up with my colleagues fast pace. But, I also have to weigh the risks of getting too comfortable not exerting energy. My body may adapt to the slower pace, making it even harder to push myself on days I do feel good.
Working too hard often affects my personal life. If I put in too much energy at work, I come home and crash, spending no time quality time with my boyfriend and ignoring dinner. Do I turn down a Sunday afternoon with friends to save up energy for the grind of Monday morning? When I worked in television I pushed myself to the limit, but now I am overly cautious. Is there a middle ground? I'm still trying to find it.
Do I take a vacation or save up my days just in case I have a flare? Living in the United States, I only get 16 Paid Time Off (PTO) days each year. By the end of February this year I had already taken seven. Sometimes I am required to take a half-day for afternoon doctor’s appointments for which I’ve had many of recently. If I take too many days I cannot take time off to travel to my parent’s house for Thanksgiving, or I cannot take a short three-day weekend in the summer. Last year I used my vacation days for vacation, and had to suffer through work when I was extremely ill because I had no more PTO. If I budget for sick days and then don’t get sick, I’ll lose that PTO. This issue is probably one of the hardest for me.
Being chronically ill is hard. Working while chronically ill is even harder. Despite its challenges, I think working has helped me deal with lupus. It has made me more aware of my energy levels and symptoms, made me appreciate my job on the days I hate it, and made me feel a little more normal. Instead of sitting at home suffering and continuously thinking “why me?” I’m forced to think about daily tasks, no matter how difficult some of them might be.
Thanks to Anya for letting me guest blog! Please feel free to visit me over at Working Lupie and follow me on Twitter