Tarra Giannattasio could hear the traffic buzzing outside her New Jersey home. Out there, she thought there must be others who understood life as the parent of a child living with type 1 diabetes. She thought there had to be help out there somewhere. But feeling down and isolated, upset over the diagnosis, and embarrassed by her state of mind, Giannattasio couldn’t think of a way to reach out. Until one day, sitting in her home, she realized there might be a way to find the support she desired.
“I sat in silence for too long,” said Giannattasio. “Life-changing was what it was when I finally got online.”
On the other side of the country at nearly the same time, a man named Manny Hernandez was struggling with his own battle: adapting to his new life as an adult living with type 1 diabetes. Having worked in web product management, he knew there’d be support out there for him. But, he thought: It should be more. It should help not just him, but his wife, his friends, and anyone who cares about someone living with diabetes. From his belief that “social networks have the possibility of doing more than just connecting people,” came his new life calling: creating and building the online support community tudiabetes.org, its sister Spanish site, estudiabetes.org, and the advocacy group Diabetes Hands Foundation. Manny has said that he is driven daily by wanting to do more and knowing people out there need to connect. Creating that place is now his life goal. Read more about diabetes advocate Manny Hernandez.
In fact, social media has become more and more not just “a place,” but “the place” where folks who care about someone living with type 1 and type 2 diabetes can come together to give support, advice, share ups and downs, and yes, team up to try to change the world. While a decade ago, a Google search may have turned up a handful of places to find help, today they are plentiful. And something called the “DOC,” short for “diabetes online community,” is carrying more and more weight in the diabetes treatment and support world.
“Online support fills in the gaps,” said Hernandez. “There is always someone who can be there when you need a shoulder to cry on or when you need to share a victory. They can be there to answer questions that only those who live this life can truly answer.”
Sites like childrenwithdiabetes.com have been connecting parents – and other loved ones like siblings, grandparents and more – since back in the days of dial-up. There, parents can log onto a chat room and find information 24/7, and usually some live support. TuDiabetes helps makes those connections for tens of thousands of caregivers and patients, as well.
Amy Tenderich, who started and runs the respected DiabetesMine site said that while at first she thought of her own needs as a person living with type 1 diabetes, it became clear early on in building her site that “caregivers” and loved ones needed support too, and perhaps in ways she’d not considered before.
“You know, sometimes it’s really frightening from the caregiver’s point of view,” she said. “They can be afraid for their loved one, as well as for their own safety. Gosh, when you think about all the things a person who cares about someone with diabetes faces, they really suffer.” Tenderich has worked toward giving those folks a place to vent, bond, and learn via a series on her site. Called Diabetic Partner Follies, the series offers blogs from the caregiver point of view, and a chance to open up conversations.
Tenderich also says she sees women reaching out more than men, and would like to change that. “It seems harder to get a man to open up about emotional stuff,” she said. “But we are finding that when the support is there, and it’s accessible and well-done, they do respond and they do open up. And getting this to happen is important. Having a place that treats your needs well and connects you with others gives validity to your needs. It can change everything for the better.”
For folks caring about someone with type 2, Hernandez said the connections are coming at a slower pace.
“I want to believe that there will be a time when people can reach out for support with no shame there,” he said. “We certainly have a long way to go (in the world in general) to deal with the stigma. That’s why we put so much into making sure these spaces are respectful and safe for all.”
There are two generally patient-focused resources that may also help those who are caring for someone who lives with type 2 diabetes. The online network PatientsLikeMe links up people with various health concerns, so they can share ideas and thoughts. The site has dozens of threads on different aspects of life with type 2 diabetes, including some for caregivers. Second, Diabetic Connect, allows caregivers to reach out and connect with others who may be able to lend support or a shoulder to lean on.
And while online support works well, those creating the spaces also see the need to move them offline. Cherise Shockley, who started the successful DSMA (diabetessocmed.com), has moved caregiver support from simply online to “in voice,” via a weekly radio program called ‘Rents, which is aimed at parents of children living with diabetes. She is also working toward more in-person programs, as well. And Children With Diabetes may be a crowning achievement in supporting those living with diabetes: This summer, their 14th annual Friends for Life Conference will draw over 3,000 people, many who simply care about someone with diabetes. There are sessions for grandparents, siblings, cousins, and friends. The conference includes parties and programs for every angle of life with type 1 diabetes, helping each group become more empowered from its own unique perspective.
As Tenderich and others have realized, those who care for people living with diabetes need love and support too. Connecting them to get just that, she said, is a worthy goal.
Hernandez also looks for a time when those who bond online use their powers to better the world for all who cope with diabetes of every kind. That’s what he is working toward with his foundation even now.
“It boils down to this: Social media helps us go beyond ourselves and help others. The barrier is so low now,” he said. “There are so many ways we can make a difference. It’s a beautiful dimension of what becomes possible with social media. You can help people you may never, ever meet. And that’s a powerful thing.”
If there is an online caregiver resource that has helped you or a loved one, please consider registering on The DX and leaving a comment. Find more stories of supporting loved ones in life with diabetes on The DX.
Moira McCarthy is an acclaimed writer, author, and public speaker who has shared her story – and lessons – on raising a child living with type 1 diabetes in the media, through books, and on her popular blog, despitediabetes.com. McCarthy has appeared on CNN Live, Good Morning America, and Fox News. She was recently recognized as the JDRF International Volunteer of the Year. Her six books include the top-selling The Everything Parent’s Guide to Children With Juvenile Diabetes and the upcoming Raising Teens With Diabetes: A Survival Guide For Parents. McCarthy is a paid contributor for The DX. All opinions contained in this article reflect those of the contributor, and not of Sanofi US, its employees, agencies, or affiliates.
© 2013 The DX: The Diabetes Experience