Those who attended the Type 1 Think Tank event on May 11th, 2013 know the magic of the “insight sessions”. After spending the morning exploring the patient voice via different creative avenues, we spent the afternoon exploring the Type 1 experience using insight sessions. Divided into groups of 1 or 2 patients and about 4 health care providers (HCP’s), the intent was for the HCP’s to focus on eliciting and understanding the patients’ stories. Their goal was to truly listen.
For the patient opinion leaders (POL’s) interviewed, the goal was to be honest and open, expressing their own unique experience of living with Type 1. Since I am a hybrid –both POL and HCP- I did not know until we were separated into groups that I would be interviewed. I sat down with four nurse educators I had never met before that day. My job as a psychologist is to listen and facilitate communication, so I thought I would have to make a conscious effort to be in the patient role. However, my wonderful interviewers made it very easy.
Anna was the one holding the semi-structured interview questions, but she simply started by asking me to tell them about my story. It felt really good to be listened to, and to share the experience of my diagnosis, which I rarely talk about to anyone (not because I am secretive, but because no-one ever asks!). We spoke about what it is like living with Type 1, the support I have in my life, and my experiences within the health care system. They gave me feedback at the end and I felt moved by their encouragement and support.
One of the powerful moments for me was when they asked when, as a mother of four with a career and Type 1, whether I ever get a break. At first I said that days like May 11th, being away for work, were a break. But then they focused on living with diabetes. Do I ever get a break from that? And I felt in that setting, safe to be honest. I do not get a break. Never does much more than an hour go by without attending to my diabetes. The less attention I pay it, the more I increase risk. It was a relief to be able to say so, and not feel judged for being negative or dramatic. They understood it.
So the experience of being a POL in that dynamic was amazing. However, six months after May 11th, I have had some evidence of how that one hour or so on one day continues to benefit me.
A few months later, I was invited to meet with the Think Tank as part of their steering committee. At that meeting, we spoke a bit about the insight sessions. Anna, one of my interviewers, was sitting next to me in the meeting. I mentioned that some comments that day had stayed with me, and had influenced my thinking about living with Type 1. Anna had pointed out how often I mentioned feeling guilty about things or thinking I should do more, which is something my husband has often commented on. Her insight strengthened my resolve to change that negative self talk. In addition, another nurse in our group asked me whether I ever meet with a nurse educator. In the midst of this lovely conversation with four nurse educators, I admitted it had been many years since I did so, and I then had to question myself. Why wouldn’t I seek out that support? I have since done so, and had a very helpful meeting.
In any case, in our steering committee meeting, I said I found the insight session helpful, and told Anna she had helped me. And she said innocently, “Well, all that I did was listen, I didn’t DO anything”. We then began to laugh. This, after all, is the simple, yet revolutionary, goal of the Think tank. It is to see the patient voice as a powerful tool for both patient and HCP.
This week, I attended another meeting with the steering committee. We spread our message and goals to some endocrinologists interested in the T1 Think Tank. Again, I found myself describing a benefit of that empowering experience. This past summer, I met with my endocrinologist and was disappointed with the lack of engagement from the front line staff at the clinic. This has been obvious for a long time, and is complained about by many of my patients. I finally spoke up and explained why it is problematic for the staff to fail to converse or make eye contact with patients. I have been activated, and I know the insight session is part of that. It gave me the courage to speak up.
Finally, another layer to this experience was added when Zal, who has watched hours of footage from that day, passed on my insight session on a DVD to me. I watched it the day after the meeting, and found myself very emotional while viewing it. I turned it off and sat next to my husband on the couch. He asked why it affected me so much. It was hard to describe what it felt like to watch myself on video, surrounded by four caring HCP’s who never cut me off or moved me along to the next question…. it wasn’t a medical model of an interview, but a real conversation. And it was probably the most I had ever said to anyone in one conversation about what it is like to live with diabetes.
As I heard myself speak and answer their thoughtful questions, I heard insights I had forgotten after that day. As I said to my husband, “No wonder I was so sad and depressed at times in those first few years, I was dealing with so much on my own.” I was a young adult finishing school and starting my career with a huge burden of care. I had to grow up in a hurry. It was such a turning point when my husband came into my life, because I finally had someone who knew how to support me. My interviewers wanted to know what he did differently, and I described it perfectly, even though I have never articulated that before or since.
Just the act of telling your story really is transformational. Watching that DVD, and remembering how it felt to have the HCP’s reflecting back on my experience, really reinforced what the THINK TANK is all about. Many of my patients improve just by telling their stories. It’s interestingly the same approach used for treating Post traumatic stress disorder…. re-tell your story, reframe it, understand it better by saying it out loud. A diagnosis of T1 is pretty traumatizing for a lot of people.
Our health care providers need to start examining the pressure they put on themselves to educate and direct and see measurable improvements right away (a new prescription, a changed behaviour). This pressure is transferred onto the patient and may actually slow progress. If only they could more often lean back and ask the question Anna asked of me, “Tell us about your story”. I think it would often be the perfect place to start.
by Michelle Sorensen