If you're living with a chronic illness, you're in the right place.

Friday, November 2, 2012

NHBPM #2: Why We Blog

1:33 PM Posted by Tiffany Taft , , ,
Today was the first of 2 days Steph and I are spending at the CURED Foundation patient symposium.  We heard from many leading researchers about what we currently know about EGIDs, including genetic components, epidemiology, physiology, and treatments (check out our Tweets from the day).  We also were able to meet and talk with some of the patients in attendance and make valuable connections with the EGID patient community.  

One of the speakers was a mom of a 6 year-old boy living with EGID.  Her story was moving to say the least, highlighting the struggles that families go through in obtaining a diagnosis, finding treatments, and striving for a new normal.  Among the statistics, pathology reports, and bar charts emerged the patient's story, and how living with a chronic illness affects the whole family.  Her son is undergoing surgery on Monday to place a feeding tube and won't be able to eat food for at least 3 months.  He struggles with anxiety and the emotional roller coaster of life with an uncontrolled illness, and the love (and concern) his mom has for him was palpable.

Another patient spoke, an adult woman with EGID, and highlighted frustrations from the adult patient community, including difficulty in diagnosis, feeling heard by their gastroenterologists, and requesting more attention be paid to adults as EGIDs are considered more of a pediatric condition. 

This is why we do what we do.

It is these stories that shape our mission and light fires under our respective behinds to not only have our practice, but to get out into social media to spread the word about the critical importance of focusing on the entire patient experience.  Medicine is coming around to integrating psychology into everyday treatment and conceptualization of illness, but there is much room for improvement.  We also need more mental health clinicians to do what we do, as Steph and I are part of a very small number of psychologists and social workers who specialize in these rarer chronic conditions.  We can't do it alone and we hope by blogging, tweeting, and facebooking (is that a term?) it will bring much needed attention.