Diabetes distress is the worry, overwhelm and burnout that build up from the daily work of managing diabetes. The Well by Northwell says it is “treatable and common,” and that it is very responsive to support. Your first step is to tell your diabetes care team how you are really feeling, and a short questionnaire called a diabetes distress scale can help start that conversation.
What is diabetes distress, and how is it different from depression?
The Well by Northwell describes diabetes distress as a clinically recognized response to the constant demands of living with diabetes. Its endocrinologist, Yael Tobi Harris, MD, PhD, says it is not a mental illness. Unlike clinical depression or anxiety, it is specific to living with diabetes, and it often reflects how supported or unsupported you feel.
Estimates of how common it is vary. Northwell says up to one-half of people with diabetes experience it. Podimetrics, a company that sells diabetes monitoring, writes on its blog that it may affect up to two-thirds of people with diabetes, with severe distress in about one in five.
How are diabetes and mental health connected?
The PMC article on depression and diabetes distress reports that depression is more than three times more common in people with type 1 diabetes and nearly twice as common in people with type 2 diabetes, compared with people without diabetes. Depressive symptoms are associated with reduced self-care and with poorer blood glucose control. The same article says diabetes distress has been associated with female gender and with depressive symptoms, and it lists fear of complications, frustration with diabetes and lifestyle restriction among its causes.
Because the two often appear together, the article notes that it has been recommended to screen people with diabetes for depressive symptoms on a regular basis. Distress and depression are different things, but both are worth raising with your clinician.
Which diabetes distress scale is the right one?
The Behavioral Diabetes Institute’s scales page lists the tools in use. Each scale is a set of questions that helps a clinician open a conversation about distress. The table below shows the main adult options.
| Scale | Designed for | Length | How it is scored |
|---|---|---|---|
| PAID | Adults; owned by the Joslin Diabetes Center | 20 items (briefer screening versions exist) | One total score |
| DDS-17 | Adults with type 1 or type 2 diabetes | 17 items | Total score plus four subscales: emotional burden, regimen, interpersonal and physician distress |
| T1-DDS | Adults with type 1 diabetes | 28 items | Total is the average of seven subscales |
| T1-DDAS | Adults with type 1 diabetes (developed in 2023) | Core 8 items; Sources 22 items | Core and Sources can be used separately |
| T2-DDAS | Adults with type 2 diabetes | Core 8 items; Sources 21 items | Core and Sources can be used separately |
| Partner-DDS and Parent-DDS | Partners of adults with type 1; parents of teens with type 1 | 21 and 20 items | Built for family members, not the person with diabetes |
How is diabetes distress scale scoring done?
Scoring depends on the scale. The PAID gives one total. The DDS gives a total and four subscale scores, and the T1-DDS total is the average of its seven subscales. In a UK online survey of people with diabetes, the authors wrote that an average subscale score of three or more is considered to indicate significant distress in that area. That cut-off comes from one study, so ask your clinician how they read your scores.
The Behavioral Diabetes Institute also warns that several translated versions of the DDS have changed the order and some content of the items, which may make the subscales unreliable. If you use a translated version, check it against the original.
Can I get a diabetes distress scale PDF, and is it free?
The Behavioral Diabetes Institute says its DDS-17, T1-DDS and other scales are free of charge to non-profit institutions for clinical care and research. For-profit companies and other for-profit institutions must pay a per-use licensing fee. The institute’s scales page lists each scale by name and language, and T1-DDS can be completed and scored online at diabetesdistress.org. The PAID is owned by the Joslin Diabetes Center, so contact Joslin directly to get it.
What to do if you think you have diabetes
The NIDDK’s A1C test page says that as of October 2026, you do not have to fast for an A1C test, and that if you have no symptoms but the result shows diabetes or prediabetes, you should repeat the test on a different day. If you have symptoms, your doctor may use a random plasma glucose test, which also does not require fasting. Health care professionals repeat tests before making a diagnosis, because results can differ from one test to another.
Distress can make this harder. Northwell notes that when distress is left unaddressed, you might avoid testing your numbers or skip medications, not because you do not want to feel better but because you are too discouraged to try. If you are dreading the test, say so to your clinician. The diabetes diagnosis next steps page lists questions to ask at that first appointment. You can also read what should my A1C be for my age to understand the number you receive.
What is hyperglycemia?
Hyperglycemia means blood sugar running higher than normal. The PMC article on diabetes distress lists hyperglycaemia among the acute complications that people living with diabetes fear. The A1C test, according to the NIDDK’s prediabetes and insulin resistance page, shows your average blood glucose over the past three months. For the warning signs that apply to you, ask your care team which ones to watch for.
Is there a diabetes support group I can join?
Yes. Northwell says that connecting with others who have diabetes, whether in person or online, can provide perspective and solidarity. The CCS Education lesson on diabetes distress says many communities have in-person or online diabetes support groups. Your diabetes educator can help you find one near you, and you can ask the group about cost and whether it is open to new members.
Which options should I compare?
No single option is right for everyone. The table lays them side by side so you can choose with your care team.
| Option | What it is | Who it may suit | Cost and limits |
|---|---|---|---|
| Talk with your care team | Your doctor, nurse practitioner or diabetes educator may adjust your care plan, direct you to financial or logistical support, or connect you with a therapist who understands chronic care. | Anyone who notices distress | Ask whether the visit is covered by your plan. |
| Certified diabetes educator | Podimetrics says Certified Diabetes Care and Education Specialists serve as bridges between clinical care and emotional support. | People who want help with daily routines and confidence | Ask your clinic or plan for the cost before you book. |
| Therapist or counselor | CCS Education says diabetes educators, counselors and therapists are trained to help people manage diabetes distress. | People whose distress feels heavy or lasts | Ask about coverage and whether they work with chronic illness. |
| Support group, in person or online | Peer connection with others who have diabetes. | People who want to talk with others who understand | Ask the group about cost and access. |
| Everyday self-care steps | Northwell suggests setting smaller goals, reaching out to friends and family, not judging your numbers, and celebrating small wins. | Anyone, starting now | No cost listed. |
| Distress screening scale | A short questionnaire that opens a clinical conversation. | People whose clinician uses one | Behavioral Diabetes Institute scales are free to non-profit institutions for clinical care and research, and for-profit institutions pay a per-use licensing fee. For the PAID, contact the Joslin Diabetes Center for terms. |
Northwell’s advice on timing is simple. As the endocrinologist Yael Tobi Harris puts it: “But if these feelings persist for a week or two, then you really want to do something about that.” If your feelings last that long, book a visit.
What should I say at my next visit?
You do not need the right words. Try one of these:
- “I have been feeling worn down by managing my diabetes. Can we talk about that?”
- “Can we use a diabetes distress questionnaire today?”
- “Can you connect me with a diabetes educator or a therapist who works with chronic illness?”
- “Is there a support group you recommend, and what does it cost?”
Before you book
- Ask your clinic or plan what each service costs and whether it is covered.
- Ask which scale your clinician uses, and how they score it.
This week, write down the three parts of your routine that feel heaviest, and bring that list to your next appointment.
By the Primary Care Visit Guide Team
This article is for general information purposes only and does not constitute medical advice. Consult your doctor or qualified healthcare provider before making changes to your health routine.
Leave a Reply