When I was diagnosed with type 1 diabetes in 1999, I was both overwhelmed with information and desperate to find more information. It was easy to find depressing facts about the immediate dangers I would face, as well as the future complications I might suffer one day. When I looked for more, however, something about support or about real people living with type 1, there was nothing more than information about fundraising and camps for kids with diabetes.
I was in the middle of graduate school at the time of my diagnosis, training to be a psychologist. In the years since, while learning to manage my diabetes, I have furthered my knowledge about how to help others with diabetes make changes and feel better. I learned quickly that the psychological aspect of diabetes care is mostly absent in the diabetes field. Patients had access to information, but they didn’t have support.
Eventually, I began to counsel people with both type 1 and type 2 diabetes. Using cognitive behavioral therapy, I have tried to help my clients learn how to change the way they think, so that they can change the way they feel and behave. In recent years, by presenting at conferences and meetings, I have been grateful to be able to share ideas with other professionals in the diabetes field about counseling and supporting patients with diabetes. It seems that many nurse educators, dieticians and other health care professionals are interested in integrating the psychological aspect of diabetes care into their practices.
In October 2012, I had the opportunity to present at the annual Canadian Diabetes Association (CDA) conference. It was a wonderful chance to meet professionals from all across Canada who focus on diabetes management. I flew across the country from Ottawa to Vancouver to attend (and had my first break from home life since having twins a year and a half ago!). One of the most rewarding moments of the conference was standing and having a conversation with Chloe Vance and Kerri Sparling, two other presenters “like me.” Chloe and Kerri are like me because they also live with diabetes and are trying to create new ways of supporting others living with the disease.
Chloe Vance, founder of the organization Connected in Motion, uses outdoor adventure-based activities as a forum to connect people with diabetes to their peers. Connected in Motion is a place where type 1’s can be around other type 1’s while being active and adventurous. This creates friendships that translate into willingness to try new things; whether it be running a race, snowshoeing, or trying an insulin pump, just being around other type 1’s provides motivation and support. Chloe spoke passionately during her CDA presentation about the way connecting changes the lives of participants, and how it was born from her own need to connect with others with diabetes. When Chloe looked for it, this type of support was nowhere to be found. So she made it happen.
Kerri Sparling from SixUntilMe spoke about pregnancy and diabetes, an alternative to the Steel Magnolias version of events. Her humor had the crowd in stitches, but she also touched people with her genuine portrayal of life with diabetes. I hope she inspired people working with diabetes to consider the Internet as a place patients can access more support and combat their sense of isolation because there is an amazing, supportive online community of people with diabetes. Many health professionals have never explored it, and blogs like Kerri’s would have made a world of difference to me in the early years adapting to diabetes when I felt so very alone. I would have gained so much from reading about how other people with diabetes feel when they have a sugar low, or want to get pregnant, or have a stressful doctor’s appointment.
Like Kerri and Chloe, I am trying to add something to the diabetes field. Psychology is, in my opinion, a missing piece in diabetes care. Support and counselling are missing in so many cases for management of a disease that greatly depends on healthy behaviors. Balanced thoughts lead to regulated moods, and therefore encourage healthy behaviors. Many people living with diabetes need help balancing their thoughts before they can tackle problematic behavior. After all, when you live with diabetes, you have many opportunities every day to think negative thoughts about yourself. Every time you look at the number on your glucometer, or indulge in a treat, or delay changing that annoying infusion site, you are likely to think negative thoughts about yourself. You may have access to physicians, nurse educators and dieticians, but these health professionals often lack training in counseling skills. Many of them still do a great job, but they are trained to inform more than to support, to tell patients what they need to know more than to really spend time listening.
I tried to use my CDA presentation time at the conference to help educators and other professionals think about how to counsel and support people with diabetes. I always emphasize how listening and empathizing can lead to hope and change. People do not like being told what to do. They respond better when they are treated as the experts they are, and doctors might not always realize it, but we are all experts when it comes to our own diabetes. Health care professionals do have their own expertise, but it is not very effective without patients sharing information about their diabetes management.
Sometimes health care professionals ask me how they can give support to people with diabetes. I tell them to use a curious, supportive approach. Ask a lot of questions like:
What has been most difficult since we last met?
What would you like to work on between now and our next appointment?
Can you think of changes you have made in the past that helped you manage your diabetes?
What gets in the way of change?
Patients need to feel like their health care team is interested. A patient’s sense of being cared about by their doctors, nurses and other health care professionals is one of the best motivators for most of the patients I have treated. People with diabetes can help themselves by bringing more psychology into diabetes care. You can ask your diabetes team about the support resources available. Ask your nurse educator to set goals with you If he or she cannot help you, then ask if there is someone else who can. As people living with diabetes, we need to be our own advocates. Parents of children with diabetes need to advocate for their children. Attending to psychological factors is vital to managing the physical demands of such a demanding disease.
And remember, you can make a difference to yourself and to others. Kerri has inspired many bloggers to share their own stories, and Chloe now has Connected In Motion ambassadors helping her all across Canada. I am trying to spread the word to health care professionals to try out a new approach with their diabetes patients, one that involves connecting to them as human beings who need support, not just patients who need medication. It’s Diabetes Awareness Month and I can’t think of a better message to send than: No one is better qualified to change the field of diabetes care than those of us living each day with diabetes.