I continue to be a huge fan of Stanford Medicine’s SCOPE blog and its ongoing series that features stories from patients affected by serious and often rare diseases. Stanford has partnered with Inspire to launch this series. If you aren’t familiar with Inspire, they builds and manage online support communities for patients and caregivers. Go to Inspire.com to learn more about them.
The latest post was written by Dawn M. Nellor of Audubon, Iowa, who advocates for education on the stigma of invisible illnesses. In Dawn’s post she doesn’t talk about her illness, but rather about the experience of being a patient with an invisible illness. She also discusses the patient’s need to be heard and respected by the physician. Here’s quote from the blog post:
“Based on my experience of not always having been heard, I’ve made changes in my life to empower myself. I live in a small community, but through online support groups I constantly talk with others affected by rare diseases to raise awareness on what life is like living with one or having a love one affected by one.” (Source: Scope Blog, Stanford Medicine, April 17, 2013)
There’s so much to be learned from listening to our patients. I believe it is essential to my role as a healthcare marketer. I invited you to check out Dawn’s post, “When you say nothing at all: Living with an invisible illness.”