By Date:

Working well with chronic illness: It's about making the right choices

by Carol Decker

I have lived with Mixed Connective Tissue Disease (MCTD), an uncommon combination of Systemic Lupus and Scleroderma, for the last 22 years, being diagnosed at the age of 26 while teaching 2nd grade. I have been gainfully employed and generally happy in my work during this time and want to share with you some thoughts I’ve had about “working well” with chronic illness. I have experienced three major flare-ups of disease since being diagnosed and am currently in a remission, although I am not without symptoms, or on medications. So I share these thoughts with you in the spirit of one who experiences what you are going through daily, but also with empathy and the knowledge that many have a much more challenging time of it.

Working well is about making choices

After determining my teaching career was too physically taxing to continue, I interviewed with a computer firm. At a pre-hiring interview, I was asked about any pre-existing conditions I had, which I disclosed. (I don’t believe this is even permitted today, but was at that time). The pre-existing condition clause in the health coverage I was to obtain left me essentially without health insurance coverage for my condition for a one-year period.

I share this, not as an example of what anyone else should do, but rather as an illustration of “stuff happens.” Since I knew I needed to change jobs and it was a good opportunity for me, I chose to disclose my condition according to my ethical beliefs, but knowing the possible negative impact. Your choices will likely be different but always make them with as much information as you can get, and consciously.

My disease activity has been steady but “milder” over the years (and we, the “working wounded,” know how severe “mild” can be), but has allowed me to work full-time in the midst. I have done so with adaptations, using the word in the sense of asking for and receiving help when I need it. What changes have I made in order to work well, and live well, with chronic illness? Along with trying to make conscious choices that are good for me, I would add a few more.

Ask for help when needed

I am private by nature. But with the onset of chronic illness the need to express myself more openly became clear. When I was uncertain as to whether I was sensitive to ultra-violet lighting, I inquired about the possibility of shielding or changing the lighting in my work space. As I changed positions within the company, travel became a requirement; I requested the ability to travel on non-stop flights when possible (to cut down on walking and joint fatigue). Currently, my position allows for more general flexibility in the hours I work. Due to ongoing esophageal and gastrointestinal issues, flexibility with my start time has been extremely helpful. In my case, I have only had to vaguely mention the need. Other situations may require a more direct approach.

A good attitude makes it easier on everyone

Others have a hard time too. Say yes as often as possible. On days when I don’t feel well, it is difficult to think of anyone but myself. But by taking a moment to put myself in someone else’s shoes, it reminds me of the challenges we all face in our often stress-filled workplaces. So when asked to do things at work, I try to say “yes” as often as possible. I save my “no’s” for when it really counts.

Negotiate whenever possible

I am an advanced business analyst and act as a liaison between users of our company software and services and programmers/developers. My job involves analyzing, interpreting, and recommending solutions to problems. So, when asked to accept an “open-ended” temporary assignment in the Midwest in support of a client, although the work itself was attractive, the physical demands seemed daunting. An undetermined length of time away from my home environment and doctors, along with required travel, convinced me the arrangement as proposed would not work.

I suggested I could complete the work in four weeks and obtained the director’s word that four weeks should be sufficient. Not only did the company benefit from my four fully committed weeks, but my health did not suffer unduly from the experience. And (very likely) my career and reputation as a committed member of the “team” were enhanced.

Know when to fold ‘em

As illustrated by my decision to leave teaching, there are times when making a change or walking away from a bad situation are the best decisions. I have been with the same company for 21 years, but I have worked in a number of positions and performed many different roles. When things are not working, I recommend doing “nothing” for a time to allow for reflection. When we are determined to be honest with ourselves, things usually become clear over time.

But don’t be afraid to ask for help. I have a long-term mentor who I contact with ideas and questions as they come up very regularly. He has said he gains as much from the interactions as I do. Friends and family do not always know what to say or do, but they generally want to help and provide support. Find the help you need when you need it.

Posted: 12/27/2008 in Careers

Be a trend-setter. Carry a custom-made ChronicBabe tote! Order yours today.

Comments

Welcome to our new comments feature! We're using DISQUS, a powerful feature that lets you create a new account or log in using your existing Twitter or Facebook account. You can comment, participate in a threaded conversation, receive updates on conversations via email (and even reply via email!) and more. Give it a try! (And thanks for your patience while we play with this new feature!)

blog comments powered by Disqus