The thing about having a mystery diagnosis is that there isn’t any text book I can refer people to. There’s no support group for people like me. As a result, it has been necessary for me to learn to be my own advocate, healthcare provider and number one supporter, all while also being the patient. It’s not something I would wish on anyone yet I also see the upside to these experiences.

Some folks in my office building decided to bring a group of people together to watch Ted Talks, with the hope that some employees might be inspired to present our own homemade version of a Ted Talk. The Ted Talk we watched was one by Amy Cuddy, a social psychologist at Harvard. In the Ted Talk, Ms. Cuddy described how certain nonverbal postures can actually impact our physiology and chance of success.

CDC reports from 2005 indicate that roughly 22% of Americans had a disability, and disability-related costs for medical care and lost productivity exceeded $300B. The most common cause of disability is arthritis or rheumatism (MMWR, 2005). These disease categories typically do not produce visible signs of a disability and individuals suffering from them do not benefit from standard structural work accommodations.

A few years ago, I sat down with a friend of mine who was faced with a perplexing problem. After years of battling Lupus and a host of other health complications, which prevented her from being able to find regular employment, she found a promising new job. But there was one problem: she was going to earn too much to qualify for Medicaid. So she asked me to take a look at the plan that was being offered by her new employer to help her determine if it was manageable, or to see if we could find a better option. As I met with her, I found myself using terminology that wasn’t familiar to her, and I was reminded that the vocabulary I learned after years of advocating for myself isn’t something that is part of our regular vernacular. After all, our insurance system isn’t exactly user-friendly.