Disease and Work.

This post is about disease and work life. The reality for those of us that live with illness is that from time to time, your illness will affect your work life. It can be difficult to strike a balance when letting your employer know about your illness. They need to know what to do in case of an emergency situation, but you don't want them to view you as a sick person. Do you let them know about your illnesses? When do you decide to tell them? How many people do you tell? How much do you tell them about the illness?

No one wants to be known as the sick person on the team. You don't want that to overshadow your accomplishments, your dedication, or your level of knowledge. But it can be hard not to be flagged as "the diabetic" or "the celiac" on the team. These are not exactly silent diseases that run in the background.

When I was diagnosed with diabetes in 2010, it definitely affected my ability to work. I was very ill shortly before my diabetes diagnosis and for most of the year afterwards. I missed a lot of work in 2010; first for the diabetes diagnosis and follow up appointments, and especially in the early days after diagnosis when my doctor was trying to figure out the correct dosages of insulin for me (a lot of trial and error which resulted in many high highs and low lows), and again later for diagnosis and treatment of two additional auto-immune diseases, grave's disease and celiac disease.

The year 2010 seems like it went by in a big blur. I was sick the entire year and was scared I was never going to get better. I thought I would continue to get diagnosed with auto-immune diseases until they killed me. The company I worked for at the time, a health insurance company, was not tolerant of the time off I needed for treatment of my illnesses. After I informed my manager about my diabetes diagnosis, I quickly became the black sheep on team. Following my diabetes diagnosis, she sent an email to me advising that I was not allowed to tell any of my coworkers that I had diabetes because it would be a burden for the team (her exact words). It went against what my doctor had told me to do, which included making sure that the people that I worked around were aware of my diabetes and knew what to do in an emergency. And it put me in an awkward position because coworkers were curious about the new equipment I was wearing (an insulin pump) and the beeeeeeeeping noises it made. Even the days I worked, I was so ill that my work performance began to suffer. Despite the fact I had always been a top performer on my team and received good annual reviews, there was little sympathy from the management when I became ill.

Things at work did not get better after my celiac disease diagnosis. I had experienced months of bloating, diarrhea, vomiting and the worst stomach cramps you have ever felt in your life. I was 5'6" and down to 106 lbs, because my body could not absorb any of the nutrients I was eating. Celiac disease affected my ability to absorb insulin. Also, because I was not able to absorb many of the carbs I ate, it often resulted in over-bolusing. This became a huge challenge for my endocrinologist, who was trying to figure out the correct basal and bolus rates. At work I was weak and light headed and extremely tired. Socially, it became difficult too, as I could no longer grab lunch in the cafeteria with my coworkers or participate in team potlucks or happy hours. Between the diabetes and the celiac, no one knew for sure what I could eat (I wasn't even sure at that point), so I was left out of those functions. Now don't get me wrong, my coworkers were some of the best people I have ever worked with. We worked together for two years and I am still friends with all of them. They were very supportive and caring.

As a result, I lost my job at the end of 2010. As a single woman, I needed my job for both the income and the health insurance it provided. I used unemployment pay to pay for my COBRA insurance premiums, which cost me $500/month. I ended up liquidating some of my 401k dollars to pay for my medical bills and to live off of.

I took the time I needed to get my diseases stabilized before job hunting, and I think that was a good decision for me.

Sometimes I feel I will have to work a little harder to prove that I am a good worker. Now maybe the employer does not feel that way at all and that's all in my own head. That could just be because I am still a little self-conscious about having illnesses. Another way in which illness affects my work life is in how I use my PTO time. I want to make sure I have vacation time saved for medical appointments and sick days, or unexpected medical events, so nowadays I don't use up every PTO hour I have on actual vacations. I have to really think ahead for the unplanned stuff that could come up. That's not something I really had to think about before.

Before getting diagnosed I never realized the extra challenges someone who manages a disease while having a job has. I certainly have a better understanding now.