Friday, February 13, 2009

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.

8 comments:

Em said...

I hope the best for you. It's so difficult for me to miss holidays and social events. I'm having a tough day and I've been reading your book, Life Disrupted. It's so nice to know that there are people out there that understand what you're going through. I've read many books on chronic illness and yours is one of the best. You are a phenomenal writer and you have so many important things to say. Thank you! I hope you don't mind if I quote exerts from it often on my blog. Chronicillnesssurvival.blogspot.com Thank you again Laruie!

Genevieve said...

I'm starting to think it's not just you but a load of people I know who used to regularly blog, including myself. The consensus has been the same from what I've read. I wonder if it's just the stress we are experiencing right now globally. People are burnt out.

I totally hear you in regards to how sick you were. I'm finally just starting to emerge from the 9 months I spent confined to bed last year. I experience much of what you spoke of. Unfortunately when you are that limited, it's quite easy to get tunnel vision on a daily basis.

Hope you get plenty of rest, and recover speedily! God Bless sweetie!

Genevieve

Kairol Rosenthal said...

'Get on Oprah', 'Write a second book', 'Twitter about your book twice a day'. These are the comments people have made to me in the last few days since my new book hit the shelves. (Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s.)

I used to be a go-getter to the max, but I'm living with cancer, night sweats, swollen glands, diets, fear, and fatigue. They hinder my ability to take on the world like I used to. I still try to kick ass, working 7 days a week and never seeing friends. Somedays I am used to it, others it pisses me off. Recently, I've begun to considered myself damn lucky - who the hell wants to go to networking events anyway? NOT ME!

Sheryl said...

I can completely relate to your thoughts about not doing or being enough. Thank you for your post.

Jeanne said...

Laurie,

Like you, I had posted about the More magazine article. A great article, I thought)! Aviva mentioned on her blog that you had blogged about the More article too.

I will have to add Donna Jackson Nakazawa's book, "The Autoimmune Epidemic" to my reading list.

I thought the article was wonferful!

Last night I posted my first vlog. In it I encouraged readers to write in requesting coverage of the topic of endo (as in endo FACTS)... in mainstream media.

Anyway, great post as always!

Please come check out my 1st vlog!!

Jeanne

Maureen Hayes said...

Thank you for speaking publicly about what you have been going through. I find it refreshing when chronic illness bloggers admit to the fact that sometimes even the best of us have bad spells we have to get through. Some people write only "rosy" posts, and while a positive attitude is very important, the reality is that sometimes you can't think your way out of a flare.

I appreciate how well thought out your posts always are, and that you took the time to get to a place where your writing about your sickness isn't just a rant of complaints.

Rosalind Joffe aka cicoach.com said...

Laurie - Amen to that. Your post made a lightbulb go off for me. I always write on the value of working when you live with a CI. But I have to talk more about how hard it is and what you have to give up to keep working. Thanks, my dear, for your insights, as always.

Laurie said...

Thanks for the feedback, everyone.

Rosalind, I hear you. It was sort of a light bulb moment for me, too--in the macro sense I've done the negotiating and compromising to make it work. But just getting through the 24 hours can be the daunting thing sometimes!

Hello, spring. You can't come fast enough :)

 
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