Over 23,000,000 people in the United States have been diagnosed with diabetes. That is almost 1 in every 10 people. The irony is that despite these numbers, many of us feel isolated by our diabetes. This is problematic in that we are undeniably social creatures. Our physical and emotional well-beings are dependent on social connectedness. We need human contact. This is reflected in the ways we use punishment to enforce rules. Effective parenting recommends the use of time outs to correct children’s behaviors. Communities use prisons and prisons use solitary confinement. Religious groups use excommunication or shunning. And countries use exile. Being isolated from human contact is considered the ultimate sacrifice. Who can forget Tom Hanks’ portrayal of Chuck Noland, a FedEx executive marooned on a small Pacific island in the film Castaway? In order to survive, Noland bonded with “Wilson”, a smudged volleyball that takes on the appearance of a human face. Just a movie you say? Research has shown that people marooned are often found dead even though they had access to all the required food, water and shelter needed for survival. They died of isolation. They died of loneliness. Our need for human interaction is essential.
Our Own Diabetes Island?
You can’t throw a rock without hitting someone with diabetes. I’m not suggesting this, living with diabetes is tough enough. Just trying to make a point. But we are everywhere. We are in Hollywood, professional sports, beauty pageants, government, and every type of business and industry. We even sit on the United States Supreme Court. Yet research suggests that people with diabetes often feel a sense of personal failure, guilt, shame, distress and embarrassment. Browne and her colleagues called diabetes “the blame and shame disease”. When surveyed, people with diabetes reported feeling rejected, discriminated against, and isolated. To make matters worse, people without diabetes are not aware that people with diabetes have these feelings. For all the same reasons that isolation isn’t good for people without diabetes, it isn’t good for people with diabetes. Add to that, social isolation directly impacts our ability to live with and manage diabetes. It has been correlated with poorer glycemic control, more complications, higher medical costs, increased cognitive impairment, impaired quality of life, and poorer self-care behaviors.
We all need a Wilson
Some of us are lucky enough to have wonderful “Wilsons” in our lives who support and help us deal with diabetes. Others, not so much. Regardless, research has suggested that educating family, friends and colleagues about diabetes and encouraging communication about our challenges and needs can increase support and acceptance.
Support groups have long been an effective intervention for the isolating effects of diabetes. In addition to gaining first-hand information about diabetes through other people’s experiences, they provide reciprocal support from others with diabetes, and the opportunity to feel less lonely, isolated or judged. The curative effect of “universality”, knowing that you are not alone and that there are others who are struggling with similar issues, has long been recognized.
Summer camps for people with diabetes represent a unique type of support group. Surrounded by people with similar issues, camps have been found to help people connect with others, gain confidence, reduce anger and anxiety, increase self-esteem, and feel normal again.
And social media is able to provide a wealth of opportunities, connections, and information. For resources on how to get connected to the diabetes online community, click here.
But I preach to the choir. You are reading this on Taking Control of Your Diabetes, a premier diabetes social media platform. I have never met any of the TCOYD folks in person, but I feel connected with them and supported by them.
Back on the Mainland
Ultimately changing the socially isolating nature of diabetes will require societal change. Organizations such as TCOYD, the American Diabetes Association and the Juvenile Diabetes Research Foundation are making great strides in connecting and organizing people with diabetes. Although the ultimate goal is to cure diabetes, an important side effect is bringing an awareness and social acceptance to the disease. These organizations offer a range of opportunities for people to better understand their diabetes and connect with others. They include options such as newsletters, magazines, websites, chat rooms, forums, local chapters, marches, political advocacy, and fundraisers.
Spoiler Alert for The Three People Yet to See Castaway
In one of the more heart wrenching scenes in Castaway, Noland loses Wilson in rough seas while escaping the island. However, with Wilson’s help he survived. In the words of Alfred Lord Tennyson, tis better to have loved and lost, than never to have loved at all. Okay, I admit this analogy of escaping our diabetes isolation is a bit cheesy. But I still believe we are well served by finding our Wilsons, and perhaps even pulling together a quick game of volleyball.
After 40+years as a JOD I started on Exubera when it launched. I loved it and miss it.
Is Afrezza the same?
Afrezza is ten times better. It is not just the device – the rapid on and rapid off time course with Afrezza is much better. Lots has been written on it. You can find more info on inhaled insulin on our website and in my Taking Control of Your Diabetes book.
Thanks for writing on this topic. At times I’ve tried to trivialize my own diabetes isolation, but it’s good to know it’s not just me that feels this way periodically. Also, TCOYD is awesome in the ways they bring the T1D community together, so I hope you get to experience that!
I really enjoyed your article and related! I started blogging because I want others to laugh with me about my diabetic dilemmas but relate to me and with me as well. Hopefully it is making me more open and not so cloaked!