First, we each live with chronic illness. That means we know the daily questions, the self doubt, the pain, the fatigue, and the fear.
We’ve learned how tough it can be to get out of bed each day and get a job done, whether you work for yourself or someone else, whether you make just enough to get by or your salary is fat, whether it takes a one hour commute or you never have to leave home.
We’ve experienced how difficult it can be to keep working, especially if you’re a woman living with a chronic illness.
Let’s face it. The work world is a tough place for women who are “healthy,” and it can feel impossible when you’re managing an illness, too.
But, we believe that work is an invaluable tool for keeping yourself healthy. That’s why we wrote the book, Keep Working, Girlfriend: navigating the workplace with an autoimmune disease. Published by Demos Medical, it was released in May 2008. We hope you’ll join us here and stay awhile. Rosalind and Joan
I was diagnosed with an autoimmune disease when I was 28 years old, one month after marrying the most wonderful man I could ever have hoped for. Multiple sclerosis sounded scary and so were my symptoms (blindness in one eye and fatigue so extreme I could barely lift myself in bed). But I was lucky — it was a relatively mild case that progressed slowly over the years. From the start, I made career changes and limited my options to adjust to my health needs. Looking back, it’s easy to see why it was difficult to achieve the stability and career track I so desperately wanted. I struggled to stay employed, difficult as it often was, and even if I didn’t know why it mattered to me so much.
By the time I was 42, however, I was severely ill with debilitating ulcerative colitis that made it too difficult to hold a job. I had two beautiful daughters, a wonderful husband and a full life (even if I had lousy health) but I was miserable. And it wasn’t just because I was so sick. I knew that I’d feel less lost and depressed if I could work, my lifeline to being normal and to maintain some sense of independence. A series of surgeries to rid me of my diseased large colon and ulcerative colitis and new therapies for MS that halted the progression of the disease, have left me relatively healthy. I’ve spent the past 10 years creating work that would allow me to earn a living and that I could do regardless of my health.
It’s this journey that I can share with others. I like to say that I got a Masters in education 35 years ago and I’ve earned my Doctorate in living and working with chronic illness.
In June of 1992, at the age of 36, I was happily employed, married, and the mother of a 7-year-old child. I was very much at home in my dual role as store manager and regional training manager for a national bookstore chain. It was a dream job, and I was steadily moving up the company ladder. Suddenly, acute bowel symptoms took me down. Continuous bleeding, anemia, intense cramping, and weight loss landed me in the hospital a few weeks later. I was in the hospital twice in 1992. The second time was only 3 months later and by then I was so messed up and weak and in pain it wasn’t fun at all. I swam in a big river of denial, fear and false hope between July and October. Little did I know it would be the beginning of a long journey of discovery and adjustment.
I’ve usually considered my journey fairly private, as something only to be shared when needed or appropriate. I have worried that sharing it would keep it stuck to me rather than having the opposite effect. However, when I attended a conference of my peers in 2005 where the opening keynote speaker was a woman who had been living with Crohn’s Disease for 52 years, and I watched her deliver her speech with grace, I decided the time had come to act. Though it’s not been my opening act, I figured I had to have been given this particular challenge for a reason. Shortly thereafter Rosalind and I began to talk and Keep Working, Girlfriend! was born.
Having divorced my son’s father (my first husband) when he was just a year old, I’ve never considered not working an option – even when I remarried. I was, after all, ultimately responsible for the welfare of another. That being said, as a result of dealing with the varying symptoms of my illness and navigating the demands of working, I held 5 additional jobs as different circumstances required I make changes. The launch of my coaching business in January 2001 seems to have finally given me the right combination of flexibility and self-sufficiency to help me truly regain strength and health.
It is with great pleasure that I engage with Rosalind to empower other women on this most interesting dance of working and living with chronic illness.