relationships

When Career and Autoimmune Disease Meet

Amy Tenderich Health Guide July 24, 2008
  • Reprinted with permisison of Amy Tenderich of DiabetesMine.com

     

    If ever two things were once considered mutually exclusive, they were career and chronic illness. Add to that being a woman and the whole thing sounded like a joke. Well, we've come a long way, Baby.

     

    According to Rosalind Joffe of CICoach.com and her business partner Joan Friedlander, there are millions of women out there succeeding in the workplace despite living with an autoimmune disease (AD). Specifically, as many as 50 million Americans - 20% of the population - are currently living with one of 63 distinct autoimmune diseases. By some estimates, 75% of those people are women.

     

    Rosalind and Joan, living with Multiple Sclerosis and Crohn's Disease themselves, respectively, have dedicated their own lives and careers to coaching other women on continuing to work. Check out their blog, Keep Working Girlfriend.

     

    Now the pair has published a book called Women, Work, and Autoimmune Disease - a much needed field guide to navigating the workplace with a chronic illness. I find this book clear, down-to-earth, and extraordinarily helpful.

     

    But first, why women? And why working, when you are supposedly so ill?

     

    According to the authors, "women are exposed more often than men to possible AD triggers primarily from the biological hormones and functions associated with the reproductive cycle." Estrogen plays a role, they say, citing evidence that symptoms of certain illnesses may increase just before and during menopause. Ugh! I couldn't find any stats, but do wonder if LADA diabetes is more common among women than men (?)

    And wouldn't anyone with a chronic illness prefer not to work? Besides being out of the question for so many folks who have to earn a living (and support their expensive disease) Rosalind and Joan have found that what Freud has said primarily about men applies to women, too: "Love and work are the cornerstones of our humanness." A good job, or a fulfilling career, can help a body feel whole and useful and fulfilled.

     

    "Workplace success, in the face of illness, is transforming," the authors write. "It affords a sense of personal power and confidence to face other challenges, large and small."

     

    And why do we need a guidebook for this? That's pretty clear, in my eyes. Have a look at my last post about Rosalind's work coaching all sorts of people (men and women) on workplace issues. The hurdles begin with disclosure - who should you tell about your illness? and how much do they need to know? It moves on from there to fatigue, frustration, and guilt about not living up to expectations. Then there are all sorts of discrimination issues. Did you know, for example, that very few people struggling at work due to chronic illness engage the Human Resources (HR) Department? Why should they trust HR, which by default always puts the company's interests first? If HR knows too much, wouldn't they just be angling to get rid of you?

     

    The ladies' new book walks you through all of these issues, helping you develop a positive strategy for requesting any accommodations you may need, all while positioning yourself as a valuable team player.

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    Even as I was looking over this book, I received an email from a woman calling herself "funlover":

     

    No one really seems to be able to help me with this, so I thought maybe you would be able to. I know you're often involved in diabetes legal/advocacy issues.

     

    I just finished nursing school and am going to be taking my licensing exam soon. Nothing is allowed in the testing room. I'm being told that as a diabetic, I do not get accommodations for this, as "diabetes is not a disability."

     

    I'm being told that if I need my glucose meter or a source of sugar, that it will be locked up in a different room and I will need to raise my hand and be escorted there- while my exam is still running, on the clock. I provided a doctor's note that states I need this equipment "on my person" but they have said it doesn't matter, as it is their policy not to do accommodations "just for diabetes." They told me just to tell someone if I "start to feel sick." Well, I don't have very good hypoglycemia awareness anyways. They told me that there are no exceptions and they cannot do anything to help me.

     

    I tried calling the American Diabetes Association, but they told me that I fall outside the realm of their advocacy. I've talked to the people administering the exam and NY state and keep being told that nothing can be done, it's just policy.

     

    Any ideas? Isn't diabetes a disability in this situation? How is it fair if I don't get time to deal with my medical condition?

     

    Can you imagine? This kind of baloney while taking an exam for NURSING SCHOOL? What to expect when this poor gal actually moves on to working full-time? Presumably in a clinic or hospital, no less?

     

    One place to start the remedy is the chapter in "Women, Work, and Autoimmune Disease" on building your support team and calling on "outside assistance" when necessary. The book also closes with a chapter on "building your warrior spirit: hope and resilience." Looks like we, in the "AD sisterhood" (and also brotherhood) are going to need that for many years to come.