May is National Mental Health Month, which can really hit home for the millions of people living with diabetes, who have to work so hard on their health each day along with all the 'regular' stresses of life. Yes, the struggle is real and it's all too common for diabetes to be coupled with burnout, depression and other mental health woes.
Be aware that it’s normal to need help. Normal to feel tired, fed up, overwhelmed, or at your wit’s end.
But you may be wondering how to differentiate between burnout, distress, and true clinical depression, for example. Or you may not know where to turn for tailored support.
We talked to several individuals and organizations who have resources that can help, including honest self-assessments and tips and tools for addressing mental health issues while staying on top of your physical health. These resources are designed for both the person living with diabetes and their family, friends, and support networks.
Diabetes and Depression: Recognizing the Link
It's important to know that the emotional and mental health burdens of diabetes are finally getting the recognition they deserve from the big national advocacy organizations. In April of 2018, the American Diabetes Association (ADA) partnered with the American Psychology Association to both train mental health providers, and to launch an online provider directory to let patients easily search for healthcare professionals experienced with the psychosocial side of diabetes care.
JDRF too, has been building a network of mental health researchers and professionals, and has recently launched a whole portal to help people with type 1 diabetes find the one-on-one support they need.
For Mental Health Month, they'll soon be adding a new set of resources on coping with diabetes distress and building resilience -- including a video series discussing sensitive mental health topics in open and frank ways.
“It’s okay,” says JDRF's National Mission Director Dr. Nicole Johnson, a former Miss America who lives with T1D herself and is heading up these mental health efforts. “We all experience distress, and we all brush with burnout at some point in time. There are ways to build our strength. As we talk about the things that help us move forward, and maybe find the positive in a negative situation, or to find hope, to find purposefulness, that's how we pull ourselves out of burnout and stressful situations.”
Defining Depression and Distress
There’s a big difference between being stressed, burnt out, and clinically depressed, says Dr. Bill Polonsky, founder of the Behavioral Diabetes Institute and a well-known expert in this area.
- Stress is sort of what we all live with every day. There are lots of things that cause us stress. Some are related to diabetes, and some aren't. Many times diabetes makes these normal stressors more stressful or challenging.
- Diabetes distress, according to Polonsky and others, is defined as a range of emotional responses to the specific health condition of diabetes. Symptoms vary, but include: being overwhelmed by the burden of managing a chronic illness, being afraid or anxious about diabetes complications and disease progression, feeling defeated and discouraged when glycemic or behavioral targets (whether realistic or not) go unmet despite one’s best efforts.
- Depression is a clinically diagnosed or diagnosable medical condition.
- Depression and distress are different. Polonsky says that many people experience both simultaneously, but that diabetes distress is much more related to self-management and glycemic outcomes than depression.
While diabetes distress shares similar symptoms with depression, it doesn’t meet the medical criteria for major depressive disorder (aka clinical depression) and is unlikely to respond to medications designed to combat depression.
Of course, when everything just feels awful and overwhelming, labels quickly can become meaningless, Polonsky points out. Using labels in that case can become dis-empowering thinking, and more likely to make things worse than better.
Self-Reflection and Screening
JDRF's Johnson says that critical first step is being able and willing to honestly take a look at yourself.
“Can you ask yourself, ‘How am I feeling? Am I having more sad days than I'm having happy days?"’ she says. “When we evaluate and look at ourselves, we become willing to then take action, and that's a conversation with your healthcare provider or someone who's safe for you.”
To help people gauge where they stand, the ADA recommends screening for both diabetes distress and depression as part of overall care for all individuals with diabetes. The trouble is that these diagnostic assessments are typically done by mental health providers, and many people don't get routed there -- certainly not for early screening.
Also, it can be just plain hard to talk about how we’re struggling, even with a medical provider or our diabetes care team. It’s hard to open up and be vulnerable. While it’s crucial to find appropriate support (more on that later) there are now a number of screening resources that are easy to access from the comfort, safety, and privacy of one’s own home (or other private space).
The most widely used tools for assessing diabetes distress are the downloadable Problem Areas in Diabetes (PAID) scale, the Diabetes Distress Scale (DDS), and the online T1-DDS, a diabetes distress scale specific to type 1.
When you complete the T1-DDS on the website, responses are automatically scored, and you receive helpful visual feedback. This tool differs from others in that it focuses on the following areas specifically identified with T1D patients:
- Powerlessness (discouragement about the disease)
- Negative social perceptions (concern about others’ negative judgment)
- Physician distress (disappointment with healthcare providers)
- Friend/family distress (excess focus on the disease by friends and family)
- Hypoglycemia distress (concerns about severe hypoglycemic events)
- Management distress (disappointment with own self-care efforts)
- Eating distress (concerns about own excess thoughts of food and eating)
"There shouldn't be any shame in having conversations about emotional well-being and mental health around life with a disease,” Johnson says. “We want to have the conversation with ourselves, and then take that conversation out into a safe space, like with a healthcare professional, moving from acknowledgment to the place of being willing to do something -- and then from willingness to action.”
Understanding and Developing Resilience
Living with T1D makes you tough, but it can also make you hard, Johnson says. You have to power through to meet this goal and then that goal. You have to stay on top of your numbers. You have to stay on top of your meals. You have to be strong. But to be honest with yourself and get the mental health care you deserve, you have to be willing to be vulnerable too.
“I will readily admit I have been in dark times, with my diabetes, over the last 26 years,” Johnson says. “I deal with burnout a lot. It's okay to be burned out and it’s okay to be vulnerable. Every day, I have to make a decision that I'm going to possibly move forward, that I'm going to express gratitude, so that I can find joy. It's when we're willing to be vulnerable and go through the emotional hard stuff in life that we realize how brave we are.”
At Baylor College of Medicine and Texas Children’s Hospital, Dr. Marisa Hilliard – another respected expert in the area of diabetes psychosocial health – works with a team that helps kids and families understand and develop resiliency around diabetes.
“What we know is that you have to use the strategies that work for you to achieve resilience,” she says. “I don’t think resilience is a thing people either have or don't have. It’s not that you build this tortoise shell and become this resilient little thing.”
Rather, resilience is the achievement of positive outcomes in the face of adversity or significant risk. It’s growth, not closing down and powering through, Hilliard says. "You can’t simply deflect the T1D bombs that come. You need to learn to manage them."
Identify Your Strengths and Use Them
Hilliard's approach is that each person has unique strengths and skills. The way to develop lasting resilience, which is key to lessening the mental health impact of diabetes, is to use what you’re already good at.
"If you're a really organized person and do really well with lists and spreadsheets and that kind of thing, you can really use that to manage your numbers and make sure you always have your supplies and keep on top of your insurance,” Hilliard says. “If you’re someone who has a good sense of humor, is silly, or finds little things to laugh about—use it! Diabetes is really stressful, so being able to find things that you can laugh about to lighten the intensity of it can help you cope.”
- What do I do well?
- What do I enjoy doing?
- How could these strengths be used to help with diabetes management challenges?
The goal is to figure out who you are as a person and how to use your strengths, versus letting diabetes get in the way of your strengths.
"And don’t try to be someone other than who you naturally are, Hilliard points out. "If you lose your keys daily and still have a flip phone, aspiring to be an organized Excel spreadsheet master won’t likely go well. Learning a new skill or way of being is so much harder, especially under a stressful scenario like managing a chronic disease, than using what you already have in your emotional or physical toolbox."
Language Matters in Diabetes and Mental Health
Words carry weight. In the diabetes advocacy community, there’s been a big #LanguageMatters push that’s been gaining steam for several years now in hopes of revising how words play a part in our thinking about diabetes and our own sense of worth and accomplishment.
Hilliard says data shows that kids and teens report “family conflict” -- as it relates to how diabetes is talked about in the home -- as one of the major predictors of poor outcomes re: diabetes and mental health issues. “In order to have a good outcome despite how stressful diabetes is, we really have to find ways for positive supportive family communication," she says.
Whether you’re a care provider, friend, family member, or a patient yourself, finding ways to talk about diabetes that doesn’t feel blaming or accusatory but supportive and understanding is key to motivation and problem solving. Sometimes we don’t even realize how words can be perceived as critical, Hilliard warns. Here are a few “Do and Don’t Say" examples to consider:
Don’t Say: “Your blood glucose is too high. You need to take better care of yourself.”
Do Say: “I know that managing your blood glucose is hard work. How can I help you with that?”
Don’t Say: “If you don’t get your blood sugar under control now, you’re going to have complications later on.”
Do Say: “What can I do now to support your diabetes goals?”
Don’t Say: “Cheer up, your diabetes could be a lot worse.”
Do Say: “I am here to just listen if you need to complain or vent about your diabetes.”
Remember that a good conversation is an empowering conversation, not a dis-empowering conversation.
Build a Support Network
Don’t go it alone. As technology advances and mental health stigmas fade, there are so many opportunities and avenues for support now. Find another person who gets it and talk. Whether it’s in person, on a forum, in a chatroom, or via a Facebook group.
That person can be anywhere.
“A main thing that's happened in diabetes in the last decade, is the reliance many people have on online communities and the diabetes online community specifically for support,” Johnson says. “It’s wonderful. When we connect with another person who gets it and can understand the day-in and day-out struggle, that in and of itself brings a salve over the emotional wounds that can exist in life with diabetes. That's always my number one: to find another person who gets it and talk.”
Finding a mental health counselor can be key as well, but Hilliard cautions it has to be the right counselor. Some providers have more experience with diabetes than others and can offer more tailored support. That’s where resources like the ADA’s aforementioned mental health provider directory can come in handy.
“If you are having regular stress, diabetes distress or major depression, we don’t expect someone to cope with that on their own,” Hilliard says. “That's why we are here, a whole field of behavioral healthcare, social work, and psychology professionals.”