February 15, 2012

Dialoging about Diabetes: PWDs Offer Ways to Improve Communication and Care - #4 Gina Capone

As a diabetes educator/healthcare provider (DHCP) I’m observing that the rapidly growing world of the Diabetes Online Community, known as the DOC, for short and diabetes social networks is helping people with diabetes (PWD) find support and feel supported. People are connecting, building relationships and feeling more positive about the challenges of managing their diabetes. I’m delighted to see this trend!

As a DHCP I’ve long realized that I can’t walk a mile in a PWD shoes. I can’t know what it is like day in, day out to deal with this challenging and relentless disease. But, what I do know is that we can learn from each other to change the dialog between providers and PWD to be more positive, more supportive.

In my Dialoging about Diabetes blogs I interview diabetes activists and social networkers with the goal of gathering ways DHCPs can change better support PWDs diabetes care efforts and make living your real life…just a bit easier.

Goal two is to enhance the two-way street – to help more PWD get connected and encourage more DHCPs to open the doors of social networking to PWDs.

Here’s my dialog with Gina Capone who’s had T1 diabetes for 11 of her 36 years and is now getting set to start a healthy pregnancy. She is a long-time diabetes advocate and social media entrepreneur, having created and contributed to numerous diabetes websites, blogs and other social community forums over the last decade.

HW Q: If you could give DHCPs a few tips to improve our understanding of the challenges PWD face in managing diabetes while living their real life, what would you tell them? 
GC: A: As a woman living with type 1, HCPs need to be more realistic and more consistent with the goals they provide for a healthy pregnancy. If the endocrinologist, and nurse and dietitian CDEs are not on the same page it can be extremely frustrating for the PWD. You have no clue who to listen to!

HCPs need to help the PWD create a “realistic” plan that can work within their schedule and not make them feel overwhelmed by diabetes the entire day. Listen to your patients when they tell you they’re struggling. Especially with women trying to lower an A1C level before getting pregnant. Recommend outside sources if needed: therapists, social workers or psychologists that actually specialize in diabetes and are non-judgmental.

Don’t scare people by telling them every complication that can occur because this: 1) Doesn’t help a person get their A1C down, 2) It can create higher levels of stress, 3) Can discourage women who are trying to get pregnant from trying at all. Instead of doing a routine examination and sending  me out the door, ask me a lot of questions.

If you are interested in me, maybe I will be interested in telling you things that could possibly help you get me more engaged in my diabetes care.

HW Q: How can DHCPs be more empathetic, understanding?

GC A: Acknowledge that you know living with diabetes is hard. My endocrinologist is fantastic and in one of my appointments he said “Gina, I know diabetes is a pain in the ass." It was a little thing, but it made me feel as though he gets it, and knows I am human being, instead of treating me like a diabetes robot.

Tell people you work with they are doing a good job. For instance: Let’s say a PWD didn’t check their blood glucose for a week, and you see they checked it only one day, acknowledge it. This little thing could empower a person to do it more often. You may see better results at the next visit!

HW Q: How do you feel social networking/being connected online and beyond can help people feel supported, possibly improve your/their care? 

GC: A: Being connected is helping PWDs feel supported as well as helping them improve their care. I have personally been connected to the diabetes online community since 2001, back when all there was were message boards and forums. It has definitely helped me get through some major obstacles in my life and my personal care. You have immediate and constant access to people who you can talk to about what you are going through. You can  also get great advice. Your online friends become your cheerleaders, which is extremely empowering and can really improve your overall care.

Having said that, social networking and being connected can become a double-edged sword. As communities continue to grow personalities can clash. I’ve been a community manager for the past 10 years and people can be extremely hurtful, judgmental, disrespectful and very competitive. Creators, owners, managers of these sites need to do a really good job of vetting and keeping the negative activities and actions at bay. If not, it can make people feel isolated and alone, which is the complete opposite of why they turned to online support in the first place.

Know your limits with online socializing. Don’t let other people’s problems become your own. Once that starts to happen you need to take a break from social networking. Also, be sure not to let all of the advice you get online replace medical advice.

Online support can’t replace a medical professional or face-to-face support groups. But, online support is a really great alternative for support if people do not have access or limited access to places where they can find people living with diabetes.

HW Q: I know you are the brains behind The Diabetes Resource. Can you give us a brief description of what PWDs, friends and loved ones will find there? 

GC A: TheDiabetesResource (TDR), is a free website and weekly e-mail newsletter, and Your Friendly Guide to a Prickly Topic. TDR is a comprehensive diabetes directory that currently has more than 13,000 resource listings covering every aspect of diabetes.  You can find medical professionals, local and online support groups, products, events and more. The site also features exclusive blog content from people living with diabetes and live weekly scheduled chats. Visitors to the site can add their website/ business listings for free.

Other sites I currently own or manage which are extremely helpful to the diabetes online community are:
DiabetesTalkfest. is a site I started in 2001. It hosts live chats with clinical and research professionals. My personal diabetes blog also lives there.
• The CGM Anti-Denial Campaign is a website started in 2008. It provides members with crucial information on how to obtain coverage for continuous glucose monitors (CGMs).
Juvenation is a type 1 community created by the JDRF for people with diabetes and their families. I have served as the community manager, since its launch in November 2009 on World Diabetes Day.

Gina, thanks for sharing and doing all you do for PWD and their loved ones!