Jessica Bernstein: Rethinking Diabetes from the Ground Up

Jessica Bernstein wants to take “control” out of the diabetes vocabulary. So read the headline when she was featured in the San Francisco Chronicle last week. Jessica is a San Francisco Bay Area psychologist who was diagnosed herself with type 1 diabetes when she was just a year old. She’s spent much of her adult life working with people with chronic illnesses, and fundamentally believes that our culture has got the approach to “suffering” all wrong.

For the last few years, Jessica’s been compiling an independent film called Blood and Honey — still only about one-third complete at the moment — focusing on life with diabetes in a variety of cultures. You can watch the trailer here for a taste. Today, Jessica joins us online to talk about what’s wrong with diabetes treatment now, and how we Americans should be rethinking it…

Photo: SF Chronicle

DM) If I read the descriptions right, your film is about pushing away the negative, and focusing on what people GAIN from diabetes?

JB) The film is based on the idea of “diabetes elders” sharing their knowledge and experiences.

In a way I hate to get into negative and positive; I don’t want to Pollyanna this condition, or belittle it. That’s not what this film is about. It is about recognizing that there is a lot of suffering involved living with an illness like diabetes — as with any difficult issue — but we’re so terrified of stuff that we don’t talk about it. Therefore we Americans don’t develop a lot of positive coping skills.  So there’s nowhere to go but to see it as a horrible experience.

In other cultures, suffering is viewed in different ways. It’s actually embraced, as a natural part of life that makes you stronger.

What about doing away with the notion of “control” in diabetes care? I read this statement from you in an LA Times article last year…

“People with diabetes of all ages, from all walks of life, are regularly reprimanded, shamed and degraded by healthcare professionals when they don’t meet medical standards for normal blood glucose levels….”

Most people with diabetes are wracked with guilt. With all the factors that effect it, I like to talk about people with diabetes working to influence blood glucose levels rather than controlling them. We need to start eliminating the guilt and shame that’s now “normal” with diabetes.

As a psychotherapist, are you kind of like a life coach for people with diabetes?

Not a life coach; I’m a doctor of psychology. But I think I do have some valuable suggestions to make on diabetes, given my thorough understanding of the issues.

Dr. William Polonsky is the most famous psychologist I know helping people with the emotional side of diabetes. Is there a larger community of diabetes psychologists out there we can all tap into?

Not really. There’s just the isolated therapist with diabetes themselves.

I’ve actually studied the topic myself with a combination of reading books and talking to people with other conditions. We PWDs tend to not see ourselves as part of the larger chronic illness community — which is unfortunate because we miss out on a lot.

What did you learn about diabetes from working with people dealing with other conditions?

I’ve worked with people who are deaf, blind, dealing with autism and developmental challenges — the full spectrum.

Being deaf, blind or in a wheelchair — those are the big 3 recognized as being the most difficult and “different” life experiences, while with diabetes, there’s this notion that if you just take your meds and eat well, you can live a perfectly normal life. There’s no recognition of what a “different” experience diabetes actually is for us…

For example, they talk about the “deaf world” vs. the “hearing world.” What about our world?

Ah, and that’s what prompted you to write a dissertation on “The Diabetes World”?

Yes. I was traveling in Israel with a deaf friend, and she had her issues of course, but I had my own issues trying to travel around and eat right with diabetes.  One day she turned to me and said, ‘I could never live with diabetes — I think I would die.’  That just had such an impact on me!

For my dissertation, I decided to research the life issues of people diagnosed with type 1 diabetes at age 5 or younger, and they had to be 20 or older at the time of the study. Most of the research on any illness or disability previously only looked at the “identity shift” that happens when you are diagnosed — but not when you’re diagnosed so young, before your identity has even taken form.

The woman who transcribed my interviews for the dissertation was blind. She’d transcribed many interviews in the chronic illness academic community, and I asked her: ‘Given what you know, what is most difficult to live with – blindness, deafness, physical disability, or diabetes?’ She too said she definitely thought it was diabetes.

{Editor’s note: Jessica’s dissertation is now available in book format on Amazon.com}

Wow, and you think your film can help bring some recognition to this?

Part of the reason I’m doing the film way the way I am — with a high-end crew — is that I didn’t want some dry medical film that’s just going to get lost in hospital settings. Also, we’re using diabetes as a discussion point, but dealing with the universal issues of pain and suffering, and how to cope.

We’ll take the film around to film festivals and see who picks it up. It would be even more advantageous to get it on television, to reach a larger audience.

Any final words of wisdom to the diabetes community?

Two messages, actually:

1) The issue of control – as a community we need to rethink this mindset. We need different terminology, in order to change the approach from the ground up. As patients, we should be addressing this and insisting that diabetes be dealt with in a more helpful and less reprimanding way.

and

2) We see diagnosis as simply a tragedy, but there is another side to it, which is what the film deals with. For example, the film shows how in the African culture, diagnosis with diabetes is viewed as initiation to a new phase of growth. To make it through, you need to draw on the community and the elders. You need to learn to cope. Those who do so successfully can then become elders themselves — people with wisdom and maturity that’s of value to everybody in society.

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Jessica’s Blood and Honey film is a personal project, in need of donated funds. If you’re interested, you can make a tax deductible donation to her non profit group here. All proceeds are donated to JDRF for the creation of new support groups around the country.