When I was 13, I was diagnosed with Crohn’s disease, a chronic inflammatory condition of the gastrointestinal tract, and from that point on nearly all of my major life choices have been made with it in mind, including picking a college major that would result in a job with health insurance.
An essay I wrote […]
This year, I had the honor to be featured in the Crohn’s and Colitis Foundation of America 2013 Annual Report. (Annual reports are the financial statements from the most recently completed fiscal year, which is why the date may seem wrong!) The gigantic photo of my face was taken by my dear, talented friend Nikki […]
People give me weird looks when I tell them that one of my hobbies is attending health conferences. Health care needs all of us at the table – doctors, patients, nurses, payers, researchers, caregivers, elected officials, developers… We are not going to create real solutions from inside silos – we need to view and understand […]
In his video “The Slow Death of Compassion for the Chronically Ill,” Ken McKim theorizes that one reason compassion for people with Chronic illness are being saddled with unrealistic expectations due to the prevalence of inspiring stories. I was just talking to a friend about the fact that mainstream writing about […]
My current commute results in an unconventional schedule. If everything goes according to plan, I’m asleep by 8:00 pm. My alarm goes off at 3:40 am and I’m on the train by 5:00 am. I end up getting just under 8 hours of sleep each night and then nap another 30 minutes or […]
The #DOC is one group I would not advise messing with. According to the CDC, in 2011 diabetes affected 8.3% of the US population. The diabetes online community is massive. It seems as though half my ePatient Twitter friends are PWD (people with diabetes). They have their own lingo, hashtags, […]
A friend recently commented that I’d been much more active in online patient and medical communities in the last year. This was meant as an encouraging feedback, to show that my efforts were not going unnoticed. As often happens, my brain took this simple remark and started spinning. I’ve had a chronic illness for 20 […]
Recent articles have brought attention to lack of diverse of patient voices heard at popular medical conferences. A Rock Health article (widely re-posted among epatients) points out the low numbers of female speakers:
I am very fortunate to have met my friend Amy several years ago. We attended the same high school at the same time for a few years, but never knew each other until we were adults. When we were first introduced, she had not begun her illness journey and I was not quite comfortable with […]
It seems like lately I’ve heard several people advise patients to be calm and professional in their interactions with the medical community at large. Don’t be angry. Don’t be rude.
On the surface these all sound very reasonable! But the more I heard it from various people and panels, the more it started […]