My RAD Life

I recently finished Lean In, an inspiring call for girls to become business leaders by Facebook COO Sheryl Sandberg. As a woman in the technology industry, I see firsthand the absence of women – not just in leadership roles, but in the whole field. Generally, the women that I do meet are not leading, but are filling secretarial or HR positions. So I absolutely encourage everyone to read this book and consider encouraging the girls and women in your life to  believe in their potential as leaders.

BUT, that’s not why I’m writing this post. I’m writing because as I read Sheryl’s insistence that workplaces need to make better efforts to accommodate pregnant women and new moms, or that women shouldn’t just drop out of the workforce the minute they become – or are thinking about becoming – pregnant, I couldn’t help but seeing the parallels to people struggling with chronic disease or disability.

So, I would like to encourage not just women and girls to Lean In, but all of us struggling with disease, disability, fatigue or depression to Lean In as well.

When I was first diagnosed with Rheumatoid Autoimmune Disease (Rheumatoid Arthritis), I read some stark and discouraging statistics. Headlines in the Huffington Post screamed “Rheumatoid Arthritis Unemployment: 1 In 5 With Disease Stop Working 2 Years After Diagnosis.” The Mayo Clinic goes on to pronounce that within five years, that number becomes 1 in 3. While medication is beginning to change this trend by allowing RAers to avoid severe disability and maintain their jobs, I think we need to take a hard look at these numbers and encourage more accommodations in the workplace and more “leaning in” from those struggling with RA.

Of course, early unemployment does not just effect those with RA or autoimmune diseases. The U.S. Department of Labor says people with disabilities are more than twice as likely to be unemployed and only about 20 percent of those with disabilities (versus nearly 70 percent without) are participating in the labor force at all.

This is a shame because people with chronic diseases are more likely to suffer from depression (and vice versa), and losing your sense of purpose through career can add to that likeliness. A career can take you out of the job of being sick and distract you, reminding you that there is way more to life than being a patient.

So, here’s what I want to see a la Sheryl Sandberg:

1. Unless there is no other option, people are often discouraged to share their disease or disability with their employer. The thinking goes, your employer will be more likely to think you’re not up to a given task, and more likely to fire you or pass you over for a promotion. Employers need to be more open with employees, and be willing to have these tough conversations and make appropriate accommodations that allow people with disease of disability to thrive at work still. This could mean later starts in the morning, more flexibility on hours to accommodate doctor’s appointments, extra tools in the workplace to aid those with disability or chronic pain, more breaks during the day to reset, better mental health and wellness programs… Whatever it means for the individual, it needs to be a conversation that can take place without fear of losing ones job or professional potential. (Reminds me of the ladies who are scared to share with employers that they might want to have a family one day.)
2. When diagnosed with a chronic disease or disability, you suddenly find yourself with an extra job (sort of like parenthood, but, in this case, you didn’t want it at all). This new job could be full or part time depending on the severity of your situation. Either way, it is difficult to find yourself suddenly trying to manage this new job and your old one. You may find yourself sacrificing projects, hours or quality at work to deal with your new “job”. You suddenly have doctor’s appointments, long calls with insurance companies and need more time to do everything… Without owning up to your situation and having understanding about it from your employer, it’s hard to balance this without suddenly appearing more flaky.
3. We need to change the culture of shame that surrounds chronic disease (including mental disease) and disability. As a society, we can not keep blaming people for their disease or depression. We need to stop discouraging sufferers from speaking up about it. We need to encourage people to openly seek help and thrive. The pink ribbon campaign has done a great job starting the conversation on breast cancer and encouraging those suffering from it to share their stories and their families to openly support them. Let’s do the same for the 23.5 million (or 50 million according to AARDA) in the U.S. suffering from autoimmune diseases, the 14.8 million Americans suffering from major depression (and many millions more suffering from general depression or anxiety disorders), and the 50 million Americans living with disabilities.

Got any thoughts on how else we could help people with chronic disease and disabilities stay in the workplace? I’d love to hear them!