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Working With Chronic Illness

Written by two working women with chronic illness, Keep Working, Girlfriend is a blog to help other women (and men) continue working and enjoying the benefits of work. The driving force behind the blog is that “it’s critical to your health — mental, physical, emotional and financial — to keep working.”

At first I didn’t agree. My last job was horrendous, partly because of the work environment and partly because my chronic daily headache was so bad. Far from improving my emotional and physical health, I despaired my lack of productivity and was constantly exhausted. My headaches and migraines were far worse than they had ever been.

Now that I’ve been blogging for nearly two years, Keep Working, Girlfriend resonates with me. It’s hard to believe I didn’t lose my mind during the 18 months I didn’t work. (Or perhaps I did — that period corresponds with one of my worst depressions.)

I have days that I’m not up to any sort of work and I still can’t write as much as I’d like to. Nonetheless, when I can work and have a specific, productive task with a deadline, I’m so much happier and more productive in other areas of my life.

However, working with chronic illness is not always the most healthful approach. If the job is too emotionally or physically draining, it can cause more harm than good. Work itself is not the key: the work has to be enjoyable.

“Work” doesn’t have to be defined as earning a wage. If you’re not able to work a paying job, get creative about what work you can do. Maybe it’s gardening, knitting or writing in a journal. Even taking a shower can be a big accomplishment. Anything that’s satisfying to you and has a clear result.

And lack of stamina isn’t a good excuse! As I’ve learned, committing to just 10 minutes of a rewarding activity is better than not doing it at all. So you only weed two square feet of your garden; it’s more than you would have done otherwise.

I write this on a morning where I struggled to get out of bed, so I hope I don’t sound preachy. I just know it works for me. I’m also aware that if my only aspiration is to lie around and read all day, I need to actively decide whether I’m showing signs of depression or truly feel too horrendous to move.

Are you able to work? Is it rewarding for you? If you don’t work, how do you motivate yourself to work?

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Working With Migraines & Headaches

Working with migraines or a headache disorder — any misunderstood chronic illness, really — can be grueling and humiliating. If you’re lucky, co-workers who lack compassion and are resentful is the worst you’ll face. Often, though, supervisors and higher ups don’t understand the severity of your illness, your performance suffers and you’re a major topic of gossip.

Migraines in the Workplace is the subject of Wednesday’s HealthTalk webcast. With headache specialist Christina Peterson the expert guest, you’ll learn how to educate your coworkers and protect yourself legally. Migraine sufferer Cynthia M. will also participate in the discussion.

The program starts at 7 p.m. EST Wednesday, May 16. Starting about 10 minutes before the webcast, go to the program’s description page and look for a link that says “Join the Program.”

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Good Stuff From ChronicBabe

ChronicBabe is always an awesome site; recently it’s been overflowing with terrific articles and links.

Illness and Empathy for Others
In her latest contribution to ChronicBabe, Laurie Edwards (whose articles I love) describes how her illness influences her interactions with loved ones when they have a passing illness — both positively and negatively.

Work and Illness
Lily Thomas, who has CDH and migraine, writes about working with people who don’t really understand what your illness is like. And her experience sorting it out when her boss was the one who didn’t understand.

Emotions in Patient-Doctor Communication
“Emotional patients” have trouble remembering what their doctors tell them, according to findings of a recent study. The “emotional” participants in the study latched onto frightening or worrying information.

Keeping Cool
Heat and dehydration are big headache triggers. ChronicBabe gave this link for ways to cool off.

Acceptance
In an essay on NPR‘s This I Believe, Kay Redfield Jamison writes about accepting the role of bipolar disorder in her life: “It is not a gentle or easy disease. And, yet, from it I have come to see how important a certain restlessness and discontent can be in one’s life; how important the jagged edges and pain can be in determining the course and force of one’s life.”

Invisible Chronic Illness
Next week is National Invisible Chronic Illness Awareness Week. During the week, people who live with invisible illnesses are encouraged to educate the “general public, churches, healthcare professionals and government officials” about the frustrations of having an illness that others can’t see.

Thanks to Jenni and all ChronicBabe contributors for sharing coping strategies and great resources.

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Migraine & Job Productivity and Worries

Sick and Vulnerable, Workers Fear for Health and Their Jobs
This title of a front page article in Saturday’s New York Times says it all. But I’ll summarize anyway… With an illness that requires a lot of time off work, a person’s job security suddenly flies out the window. The worries then extend beyond the illness; potential loss of income, identity, insurance and normalcy are all in jeopardy.

Artin of Pain in the Head, a blog that Moogle’s Thoughts introduced me to in this week’s Carnival of Compassion, experienced some of these dilemmas yesterday. The post title, Enter Dementors, is fabulously descriptive.

How much does migraine affect work life?

“A diary study of migraine sufferers from the general population revealed that over a three-month period, 69 percent of employed migraine sufferers experienced reduced work effectiveness.1 When people work with migraine, their productivity is reduced by 41 percent. Further, about 40 percent of all migraine sufferers account for 75 percent of all productivity losses.

“The best estimates suggest that migraine costs U.S. employers $13 billion per year in lost productivity. Of that amount, the largest part is due to reduced productivity at work, not absenteeism. As a corollary, workplace programs for treating migraine might help cost-effectively reduce the burden of illness. Since the current cost of migraine treatment in the U.S. is $2 billion, the productivity gains might more than offset increased spending for better healthcare. In addition, human suffering might be reduced immeasurably.” (Migraine in the Workplace: Impact and Hope, from a 2004 ACHE newsletter)

If you’re still not convinced, read these summaries of findings from more than 20 studies on migraine and productivity.

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Addressing Obstacles for Working Migraineurs in the UK

In response to Headache UK‘s study findings that one in four people keep their headaches a secret to avoid discrimination at work (Hidden Headaches in the UK), The Migraine Trust will launch a yearlong effort to expose the difficulties that migraineurs face at work. The campaign, which will begin during the UK’s Migraine Awareness Week (Sept. 4-10), will include collaboration with government, publication of a fact sheet on working with migraine and recognition of employers who address the needs of migraine sufferers.

A successful campaign could be a step toward awareness in the rest of the world, too.