Almost the last stop on the Bloggers' Book Tour for "Women, Work and Autoimmune Disease-Keep Working Girlfriend!" (KWG): A very personal review

Rosalind Joffe
Read about the book's authors, Rosalind and Joan, here.

Check out all of the Book Tour participants here.
Joan Friedlander
And all of the Book Tour stops are listed here:
11/3-11/12, 11/11-11/14, and 11/17-11/23.

The book is great. It's short, easy to read and packed with information such as: Pacing yourself, searching for a job, keeping a job, disclosure on the job, negotiating with your employer for accommodations, and being self-employed. And it's written from the best, most real perspective possible: That of two women who know from firsthand experience what it's like to live and work with CI.

I could have used this book about twenty years ago when I was diagnosed with my first ICIs: Fibromyalgia and Endometriosis. I mean, I REALLY could have used it. I'd go so far as to say that I might still be employed now if I'd had this book back then, and used it.

The book starts with a chapter in which autoimmune disease is defined. I looked into the subject a bit more from other sources, and there seems to be some disagreement as to whether Fibromyalgia is an autoimmune disease (AD)... and it seems to me that endometriosis should really be included on the list, but it's not. That said, on with the review!

Reading this book made me think a lot about my most recent job. Rosalind is also a career coach for professional people living with CI (appropriately, I called her in to help me in 2006 when I started having problems doing my job as a Program Assistant for the local Department of Juvenile Justice office. The cause of the problem was the fact that I was suddenly asked (turned out it was actually an order, not a request) to take on the task of acting as receptionist for the local Department of Family and Children Services office for two hours every day, in addition to all of my duties as PA for DJJ. Long story short, both offices were housed in the same building and I knew how to run the front desk of the busy DFCS office from past experience. The additional responsibility took me out of my quiet office with one phone line (and a window!), and put me behind a large piece of bullet-proof Plexiglas greeting and prioritizing the needs of everyone who walked in the front door of the busy public agency, and coordinating four direct phone lines with thirty five or so case workers' lines transferring to the front desk if the worker didn't answer. As I said in a written communication to my boss:
The reason the DFCS receptionist position type of work is so hard for me is that it triggers the FM symptoms of IBS. Specifically, the constant distractions are the problem: Four phone lines all ringing at the same time, clients continuously at the window, appointments and documents to be logged on the computer, etc. There is not any one specific task that causes problems for me with this job; it’s the multitude of things; the whole of the job taken together.
Call it central nervous system sensitization, hypersensitivity, whatever. That job did it to me and the result, within a couple of months, was not pretty. I'm going to say here what I never actually said to my employer (and should have) because it's a hard (embarrassing) thing to get specific about. Rosalind has described it in the most delicate way I've heard: streaming diarrhea. I mean, I eventually had to stay home for a week wearing a sanitary pad constantly because I wasn't able to make it to the toilet "cleanly." That's no way to be out in public. It's just not sanitary.

I told the powers that were that I was not able to do the DFCS receptionist job and gave them general reasons why not. From there it got really complicated and that would be a whole different blog post. The point is that I waited until too late to start working with Rosalind; when you're making the kind of money I was making, it was hard to justify even her very reasonable rates. This book would have really helped me in that situation.

From the comments to the question about disclosure that Rosalind answered on How to Cope with Pain:
"What is unfortunate, but true of many with chronic illness, is that we do wait to long to disclose and by then the situation may not be able to be fixed."
I learned from this experience what I already knew, that these symptoms can come on suddenly and get really bad really fast; what I learned that's new is that I need to take action immediately to disclose and find accommodations that work. It's a difficult situation and the fact is that sometimes accommodation is impossible. I was told that I needed to continue doing the same jobs in the same way for a few more months, until we could get situated in a new office independent of the DFCS agency. I've you've ever lived with the severe symptoms of IBS, you know that a few months can put you in the hospital. Long story short, I chose not to go there. I didn't and still don't understand why I have to put my health in severe enough jeopardy to be hospitalized before I am taken seriously.

This book also reminds me of the difficulties I had in the years leading up to my last job; of the constant struggle to get through each and every day; of how it was never possible to take enough time off to feel well and rested again; of how I became "more vulnerable to a loss spiral, in which losses proliferate(d) and escalate(d) over time." [page 30] It also shows a path I could have taken, if only I had known how: A path of choosing to believe in the possibility of being able to attend functions or perform activities and learning to live with the letdown of sometimes having to cancel or back out, instead of choosing to limit myself to only the essential activities of my work and home life because of the fear of not being able to follow through on my commitments.
"If you don't plan for what's possible, you're leaving it up to chance - and that creates a victim mentality." [page 49]
This passage was also very meaningful to me:
"I reinvented myself time and again, only to discover that I couldn't do what I thought I could because of ever changing limitations." [page 50]
Recently I decided to use my profile on LinkedIn to see how many jobs I've actually had. I went back 25 years, and it doesn't even include the temp jobs that I had in between "real" jobs. I used to thrive on change, and be a multi-tasking fool all day long. In my early 40's when my career should have continued to progress, instead it started to decline. When what should have been a minor surgery to remove an endometrioma by laparoscope became a major setback, my career path took a nose dive. And I've been here, bottomed out, for a couple of years now.

I don't tell you these things to cry in my spilled milk, but to use myself as an example with the hope that you will use the tools that are available nowadays to make better choices than I have so far. One other tool Rosalind has made available to us is the "Keep Working With CI Workbook," which includes what we need to put the ideas from KWG into action. And she's running a special promotion in honor of the release of the new book that includes lots of extra goodies with the workbook, at a wonderful price.

KWG ends with a chapter on the Warrior Spirit. I love the image that idea projects to me. My Warrior Spirit rides a white horse and in spite of everything, I feel she's still within me. We will ride again!

I think when the Book Tour is all said and done, I'm going to do another post with some of my favorite quotes from other stops on the tour. So be watching for that next week.


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