On Work and Chronic Illness

It’s been a tough blogging spell lately. Not for lack of topics—I have a running Stickie note of links and ideas on my desktop—but more a lack of focus or creativity. Sometimes being pulled in many different directions and having many different things to talk about can have the exact opposite effect of what I’d like as a writer.

In fact, I’ve started and stopped at least three different posts since Tuesday. And then a link to this article in February’s More magazine appeared in my inbox, and suddenly I knew what I needed to write about.

The article is called “Ill in Day’s Work” and, as you might expect, it explores the challenges of chronic illness in the workplace. (It’s written by Donna Jackson Nakazawa, author of the excellent book The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope).

The article itself is informative and encouraging, and covers many of the “macro” issues of employment and chronic illness—disclosure, financial compromises, discrimination, etc. Many of these issues are ones I discussed with my colleague Rosalind Joffe for Life Disrupted, and though this article focuses on women a bit older, the universals resonate compellingly.

But those big-picture items are not what I want to discuss today. I’ve done a lot of compromising and negotiating and finagling already, and for now I think I’ve patched together a career path that works for my skill set, my long-term goals, and my health.

However.

It’s the everyday, smaller stuff that resonates with me these days. For some context, I’ve been really quite sick since before Christmas, with the exception of a few days in the middle of January. Sicker than usual, sicker than I have the patience or tolerance for, sick enough that I was on nebs hourly for awhile. (I haven’t written about it because there really isn’t a point; this is winter for me and there’s not much interesting to say about it.)

This winter’s malaise has made staying engaged in my work difficult. The issue of physically being able to get to work is one thing. Luckily some of this happened over winter break; luckily no one minded when I had to cancel class(which I never do); luckily my students are patient with my weeks-long constant coughing and my lack of voice; luckily I work from home a couple of days a week; luckily my husband meets me to help me get home when I cannot make it back on my own.

Because I am finally starting to feel better, I can see the toll this semester has taken. I have not seen my friends in almost two months. I’ve missed all holidays and most family events.

More than that, it’s like I’ve been working in a tunnel, where I am so focused on getting through the day and making it home that I don’t have the mental or physical energy to be as productive as I’d like. I worry I’m not as “on” as I’d like to be in class, I worry I’m not as clear-headed when I get home and try to finish articles on deadline or finish research for a big project. The article mentions lost networking opportunities after work as a result of chronic illness, and I found myself nodding. Lately I haven't even wanted to talk on the phone at night, never mind make it to functions.

However. (Again.)

I’m beginning to emerge from the hibernation, and so I’m beginning to see beyond the tunnel vision of merely getting through the day. This mish-mash of several different jobs, seven-day work weeks, and unconventional hours has been carefully thought out and planned with the future in mind, and while some winter days are darker than others, most of the time it works for me.