Guest Blogger Post: Working With Chronic Illness by Rosalind Joffe

Please welcome guest blogger, Rosalind Joffe, the author of the new book, Women, Work & Autoimmune Disease: Keep Working, Girlfriend! I was honored to be asked to participate in Rosalind’s book tour and she has written the post below for Fighting Fatigue. Please read more about Rosalind and her website at the end of this post.

Working isn’t for everyone who lives with chronic illness. Maybe it’s simply not possible or it’s not the option you choose. I wrote this book, Women, Work & Autoimmune Disease: Keep Working, Girlfriend! to speak to women with children about the competing demands of work, child rearing and illness on their energy and time.

I write for those who are working (or want to work) and who wonder if you should be doing this because of your health. The book, the blogs, all of my writing is intended to give you some tactics, offer a strategic approach and provide words of encouragement.

I’ve been asked to write about this concern: How do you raise a family, be productive at work and live with unpredictable and sometimes very demanding disease?

Now, I can’t possibly explore all of the issuesaround this. Every working mom struggles with the first two competing demands, family and work. So, how does the 3rd element of chronic illness affect this tightrope?

You have the added dimension of unpredictable and sometimes debilitating chronic illness that can destroy even the most careful planning. And let’s face it. Most kids like predictability above all else. And kids like to be like everyone else – they want to be “normal”.

You can’t make the illness more predictable. But there is one thing you can do. You can “normalize” this experience so neither you nor your children focus unnecessarily on how bad it is.

When our oldest daughter, Lucy, was 10, I noticed that, although I’d lived with MS since before she was born, she had begun to struggle with the idea that I was sick.

Like most children her age, she wanted to be like everyone else. She’d ask, why was this happening to us and no one else? Why did her mom miss so many soccer games, skip class field trips, and take naps when she got home from work?

I was periodically extremely tired or in pain and that frightened and upset her. She couldn’t voice these fears. But I thought that she’d be more accepting of my absence when she could move beyond the fear of the unknown and focus on what was actually happening.

I embarked on a campaign to creating “normal”:

• When I was in pain, I described how it affected me rather than how it felt. I also described in detail those parts of my body that were still fine.
• I carefully spoke about what I could and couldn’t do as a matter of fact and no big deal.
• I made sure to sign up for one school field trip I thought I could manage rather than skip all.
• I went to a few soccer games but was careful not to promise what I couldn’t deliver so I kept it to a minimum.
• I laughed about my power naps rather than acting ashamedI needed one.

Our daughters have grown up to be two of the more compassionate and resilient people I know. I think that living with a mom with chronic illness helped them see that normal was in the eye of the beholder. And chronic illness is just another thing that life can throw at you. You have to stay nimble so you can get up for another round.

Rosalind Joffe is thepresident of cicoach.com, a resource for professionals who live with chronic illness and a chronic illness career coach. Her blog is Working with Chronic Illness.com.