Many of us with diabetes feel pretty darn down in the dumps on a regular basis. We talk a lot about the link between this illness and clinical depression, and how the latter should be recognized as a real complication of diabetes.
But not so fast: New research presented at the American Diabetes Association’s Scientific Sessions earlier this month shows that many of those who’ve been thought to be clinically depressed are actually living with “diabetes distress,” something more mild and concentrated on the drudgery and compromises that diabetes can impose on us on a daily basis.
One study presented at the ADA conference shows that type 2 PWDs who have symptoms of depression can be significantly helped through diabetes distress interventions, such as face-to-face education and support, including peer-support online or in person. A second study focusing on type 1s emphasized the potential importance of treating depressive symptoms regardless of the cause, and the greater the depressive symptoms, the more risk of dying early compared to those who aren’t depressed. Yikes!
“The message is something like this: We’ve been using the term ‘depression’ pretty loosely, from being descriptive as ‘I’m tired and depressed,’ to the more frequent diagnostic term… but we get them mixed up,” says Dr. Larry Fisher of UCSF, lead author of one of the new studies. “We’re trying to make a distinction between diabetes distress and depression, since having some level of distress is just a reflection of someone struggling with a daily chronic condition. It’s expected, some more and some less.”
Fisher’s work is definitely disruptive, but he emphasizes that he and other researchers studying this are not denying that depression happens and that it’s important — just that it’s not recognized correctly and too much of what we label “depression” is really descriptive and is not clinical-level diagnosis of a defined disorder.
“There is imprecision about the definition (of depression) in its general use and therefore imprecision about how it’s treated,” Fisher said.
According to new medical literature, “Distress and depression are two distinct emotional states. Whereas distress describes a transient aversive state, interfering with a person’s ability to adequately adapt to stressors, depressive feelings should rather be considered as a more constant emotional state.”
But Fisher says that clinical depression is measured with scales that are all based on symptoms, and not tied to the exact cause of what’s bringing someone down — as in, those questionnaires we patients are often asked to fill out, about how you’re feeling on a daily and weekly basis, and whether you’ve ever experienced negative symptoms, like having suicidal thoughts. That standard form, called the PHQ-9 (patient health questionnaire), is the official depression detection model that’s been in use for a number of years.
The problem, Fisher points out, is that you can treat people with anti-depressants but never really get at the heart of what’s causing their depression. In Fisher’s research, he’s found that addressing the distress symptoms can decrease how much someone is feeling that way and ward off any actual clinical depression.
Fisher and his team have been developing a new way to measure diabetes distress, which by his definition covers: the emotional struggles associated with the many expected worries, fears and concerns that come with managing a progressive, chronic and demanding disease like diabetes. It’s those unique, often hidden emotional burdens, like getting overwhelmed about checking blood sugars or facing scary complications, or how diabetes negatively impacts your work or family life on a regular basis. Doesn’t that sound like D-burnout? Well, yes, they are pretty similar.
The questionnaire Fisher uses with patients hones in on whether someone has been worried about any specific diabetes problems such as severe hypoglycemia. Using this tool, researchers get a total distress score for each patient, and also scores for sub scales that focus on specific areas of distress. The people in Fisher’s ADA study also filled out a basic patient health questionnaire to measure depressive symptoms, and his team found that interventions aimed directly at the diabetes problems were able to improve the negative scores of the majority of patients.
“What’s important about this,” Fisher said, “is that many of the depressive symptoms reported by people with diabetes are really related to their diabetes, and don’t have to be considered psychopathology. So they can be addressed as part of the spectrum of the experience of diabetes and dealt with by their diabetes care team.”
It comes down to treating the emotional and mental side of the diabetes picture, not simply prescribing anti-depressants or referring a PWD to a mental health specialist for treatment, both Fisher and his colleagues say. This isn’t a new issue, Fisher says, but one that is getting more play these days because more endos and HCPs have started recognizing the importance of psychosocial support and attention in clinical care.
A key to addressing this within the clinical environment is being mindful of not just pushing patients to “do better” in the short-term, but helping them find a sustainable routine.
“We rush so quickly to change behavior, but we don’t pay attention to all the things that come with changing behavior,” Fisher said. “We have to look at how people are feeling, the expectations thy have and the effect of what they’re doing when it comes to behavior change.”The author of the other study, pediatric endo Dr. Trevor Orchard at the University of Pittsburgh, says D-management improvement is only part of the big picture when it comes to addressing both diabetes distress and depression. Even after the researchers controlled for those factors, there was still a link between depression and a higher risk of death.
“Worse adherence to treatment regimens is part of the answer, but only explains some of it,” he said. “Depression is also associated with worse eating habits, less exercise, lower socioeconomic status and various physiologic states, like inflammation and immunosuppression.”
Fisher says his team is developing some new intervention models to address all these issues, but for now, it’s important for us patients to work to have balanced, honest conversations with our medical team about how we’re feeling about our D-management.
The Diabetes Online Community is a part of that equation, he says.
“What we see from the online community, whether it’s tweeting or blogs or forum discussion, is that it’s usually (focused on) how you deal with diabetes and cope with it on a personal level,” he said. “That is absolutely what this is all about.”
Our good friend Dr. Bill Polonsky in California, who leads the well-regarded Behavioral Diabetes Institute and has been a leader in this emotional side of diabetes for many years, agrees with Fisher and his colleagues. Through BDI and in his own practice, Polonsky has been studying and talking about this issue of diabetes distress for many years.
So often, depression and distress overlap because they have many of the same symptoms — feelings of hopelessness and what can be done about diabetes. But connecting with other PWDs, especially at diabetes camps or in the online universe, can be hugely beneficial so people don’t feel isolated in what they’re experiencing.
As someone who’s been given the “clinically depressed” designation in the past, I couldn’t agree more. Even though I took great care in analyzing how I felt and sorting through my emotions and mental obstacles in order to feel better, I found myself in a dark place. Diabetes didn’t necessarily force me there, but that vicious cycle of depression made it more challenging to do what I needed as far as D-management, and I found myself without much motivation or hope that anything D-related would turn out OK. It wasn’t until others in the DOC started sharing their own stories that I saw the light, so to speak, and started reaching out to ask for help.
“It’s about connecting and that’s what the DOC is all about,” Polonsky says. “We have to do better to not just recognize that we’re feeling down, but to know how and why that’s happening. And from there, we can talk more about what we can do about it.”