Mental Health and T1D
Type 1 diabetes (T1D) is a chronic disease requiring daily management, which may affect an individual and their family’s emotional and mental well-being.
Each day can bring its own challenges and we want to make sure you have the tools to better manage them.
Diabetes Stress Management
Living with type 1 diabetes is not always easy. You may experience stress from your demanding management routine, the cost of insulin and other supplies and/or the perceived stigma of having a chronic disease.
The social and emotional effects of T1D are very real, and can lead individuals to experience burnout, depression and anxiety. Despite these frustrations and hurdles, many people with the disease are able to achieve positive outcomes in both their diabetes management and their personal lives.
The ability to overcome these challenges and rebound from low points is often referred to as resilience.
Some people seem to thrive while under stress. But the good news is, this is not a fixed trait—anyone can build their own resilience.
Building resilience is a combination of harnessing your unique individual strengths and getting outside support. Having an easygoing disposition may help you remain calm despite stressors. Traits like confidence or creativity may allow you to stay motivated in pursuit of your goals or devising strategies to overcome your challenges.
How To Build Resilience
Everyone has personal strengths that they can identify and cultivate to try and become more resilient.
For example, someone who is highly organized might channel that trait into a more structured approach to coping and management. That could involve setting goals and planning ahead. Try it out for yourself—here are a few questions you can ask yourself to identify your own strengths:
- What do you enjoy doing?
- What do you do well?
- How can you harness these strengths to help better deal with the stress of managing your diabetes?
Your medical team, caregivers, family and friends can all be part of fostering resilience as well. Parents and siblings can offer support and compassion. Friends and colleagues can educate themselves on how to respond in a hypoglycemic emergency. Partners and other diabetes caregivers can accompany you to your doctor appointments and provide reassurance that you are not alone.
Psychologists, social workers and other clinicians can work with you to help increase your resilience. Meeting with a professional to develop healthy coping mechanisms and address challenges such as anxiety or depression that may be associated with T1D can help you reach your disease management goals.
Social media can also be a source of support that allows people with T1D to connect with one another and find support.
Platforms like JDRF’s T1D Community can help you find peers who have had similar experiences and can relate. Making connections via an online diabetes community has been associated with lower blood-glucose levels than those who do not—which in itself can help reduce stress.
Technology and Resilience
Developing resilience can also involve the resources and tools that you use to manage your disease. Technologies like flash glucose monitors (Flash GMs) continuous glucose monitors (CGMs) and insulin pumps may simplify your diabetes management routine, improve your quality of life and help you feel more in control.
Diabetes management technology may be more beneficial to building resilience for some people than others—if you haven’t considered incorporating this technology into your lifestyle, now may be the time to explore.
Seek Out Supportive Communication
When reaching out to others for support when feeling stressed by the challenges of managing T1D, it is important that the people you look to for support provide encouragement, rather than criticism or judgement.
Here are a few examples of critical versus supportive language. If you find that your friends and loved ones often make comments that resemble the phrases on the left, you may want to try and discuss positive reinforcement by sharing these examples with them.
Aside from offering to help out or lend an ear, it can also be effective for others to acknowledge the efforts and accomplishments of people with T1D. Recognition of your progress can provide positive reinforcement and help keep you motivated.
Dealing with Diabetes Distress
What is Diabetes Distress?
Diabetes can be a difficult and demanding disease. The daily ongoing demands of managing type 1 diabetes (T1D) as well as any diabetes emergencies, development of complications, health issues, or even modifcations in your treatment plan like changing insulins or starting a new flash glucose monitor (Flash GM) or continuous glucose monitor (CGM), can add to the emotional burden of diabetes. This emotional burden can lead to significant diabetes distress.
Diabetes distress is defined as a range of emotional responses to living with and managing diabetes.
Symptoms can include feeling overwhelmed with the burden of managing diabetes; fear and worries about complications and/or them progressing or having a severe low; feeling defeated, discouraged, or burned out when you are not meeting your blood sugar goals despite your best efforts to manage them.
Experiencing diabetes distress is a normal reaction to living diabetes. In fact, it’s a common problem that affects one-third to nearly one-half of adults and adolescents with diabetes.
Diabetes distress can not only affect the person living with diabetes, but family members including parents and partners can also experience it.
Diabetes Distress or Depression?
There are no vacations or breaks from T1D and managing it can become frustrating. Studies have shown that a majority of people living with diabetes experience worries, fears and negative feelings, which can lead to diabetes distress.
Diabetes distress differs from major depressive disorder in many ways, but the two conditions often overlap and share some similar symptoms. Because of the similarities, diabetes distress can be misdiagnosed as depression, which can lead to individuals receiving the wrong treatment for it. This misdiagnosis is also due in part, to the similarity of common depressive symptoms with symptoms related to high blood sugar levels – like fatigue, weight loss, and issues with sleeping.
Compared with major depressive disorder, diabetes distress:
- Is diagnosed in people with diabetes
- Is not considered to be a psychiatric disorder
- Is far more common than depression
- Shares some similar symptoms but does not meet the criteria for major depressive disorder
- Is unlikely to respond to medications like depression does
- Is often directly linked to poor glycemic management and poor self-care (even at low levels of distress)
Dealing with Diabetes Distress
It is important to learn how to cope with your feeling of distress, worry, and burnout and/or get some help from your healthcare team. Here are some tips:
- Acknowledge your feelings. You won’t feel happy all the time. Almost everyone with diabetes has felt frustrated or stressed about the challenges of managing it. But when feelings get overwhelming and last more than a week or two, it may signal that you need help.
- Talk with your diabetes care team. Getting help from your diabetes healthcare team (doctor, nurse, diabetes educator, psychologist, or social worker) is important to treating diabetes distress. This is important because if left untreated the condition can worsen. Your diabetes healthcare team may be able to help you by assessing your diabetes distress and developing a management plan to address the challenges you are having. They may also refer you to another healthcare provider.
- Get support. Talk with your family and friends and tell them how you have been feeling. Be honest about your feelings and tell your loved ones how they can help you (most people don’t know what they can do – and maybe you just want someone to listen to you vent).If you feel uncomfortable talking to family or friends, you may want to join a support group. Sometimes talking to other people with T1D who understand what you are going through can help. A shared experience offers a different type of support than friends and family. People with diabetes who get support do better- both in managing their diabetes, how they feel and their quality of life.
- Set realistic expectations for yourself. Taking one thing at a time, in small doable steps, can lead to big improvements. Set small goals for yourself like “check my blood sugar 4 times today” and then once you are doing that set another small goal like, “walk 10 minutes a day two times a week.” Once you achieve one goal, add another small goal or increase the frequency of your goal. Your diabetes treatment team can help you set these goals.
- Take time to do things you enjoy and reward yourself. Give yourself a reward when you meet your goals. This should be something you enjoy — watching a movie, hiking, playing a game, or spending time with friends (it does not need to cost money). It is important each day to spend time doing something you enjoy and having some “me” time to reward yourself for meeting your diabetes goals.
Tips for Living Well with Diabetes
Realistic expectations and practical strategies are key to managing the emotional challenges of living with diabetes.
One thing that can help is changing the way you think about your blood sugar.
Rather than getting angry or upset, look at your blood glucose results as information to help you decide what to do next. Don’t spend time punishing yourself over a high number. Use what you know to plan ahead. Using words like “high” and “low” when referring to your blood glucose instead of “good” and “bad” can help.
How to Ask for Support
If your diabetes management is off track, ask for support. You may need a treatment change, or external stressors like work or relationship challenges might be contributing.
Ultimately, you need space to identify the issues and get support. Talking to other people who understand is very important. JDRF has resources to help connect you to others in the T1D community.
Type 1 Diabetes and Depression
People of all ages experience depression. According to the World Health Organization, over 350 million people globally experience depression, but it often goes undiagnosed and untreated because of the stigma around mental health issues.
Depression is estimated to affect one in four people with diabetes (type 1 and type 2). Adolescents with type 1 diabetes have five times the rate of depression than adolescents without the disease.
Adults with T1D who also have depression face worse health outcomes if the depression is untreated and lose more time from work, require more healthcare, and have higher blood sugar levels than individuals without depression.
Adolescents with T1D and depression have higher blood glucose levels, an increased risk for diabetic ketoacidosis (DKA) and severe hypoglycemia, and have more issues when transitioning to adult care for their diabetes.
Having T1D doesn’t mean you will develop depression, but being aware of the symptoms is important so you can recognize them early and get treatment.
Symptoms of depression in adults include:
- Feelings of sadness or hopelessness
- Loss of interest or pleasure in activities you used to enjoy
- Changes in sleep – either too much or not enough
- Changes in appetite – either eating too much or not enough (and sometimes changes in weight)
- Tiredness and lack of energy, so even doing small thing take extra effort
- Slowed thinking, speaking or body movements
- Trouble concentrating, making decisions, or remembering things
- Feelings of worthlessness or guilt, fixating on past failures or self-blame
- Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
In children and adolescents, symptoms of depression can be similar, but there may be some differences. In children, symptoms may also include:
- Body aches and pains
- Refusing to go to school
- Poor performance in school
In older children and teenagers, symptoms may also include:
- Irritability and anger
- Poor performance or poor attendance at school
- Feeling misunderstood
- Being extremely sensitive
- Avoiding social activities
- Possible use of recreational drugs or alcohol
In both adults as well as children/adolescents the symptoms of depression interrupt or greatly affect work or school, social relationships, or other important areas of their lives.
The good news is that depression can be treated and symptoms mitigated, especially when depression is diagnosed and treated early.
It is recommended that individuals with diabetes should be regularly screened by their healthcare providers for depression, so treatment or a referral to a mental healthcare provider can be made.
If your healthcare provider doesn’t ask about how you are feeling emotionally – it is important that you speak up and tell them. Getting treatment for depression early is key and can help to improve your long-term medical and psychological outcomes.
Treatment for depression in children and adults can include cognitive-behavioral therapy, interpersonal therapy or other evidenced based therapy and/or medication(s). Finding a mental healthcare provider who is knowledgeable about diabetes can also help.
Talking with your friends and family is key. They want to help you, so asking for what you need (rather than having them guess or do something unintentionally unhelpful) is important.
Depending on your relationships with your family and friends, it may be difficult to talk to them. So you may find that talking to other people with T1D can be more helpful. Many people have found joining a local diabetes support group at their diabetes education centre, local hospital or joining one online to be a valuable form of community. There are many types of support groups, and it’s best to find the type that meets your personality and needs.
T1D Resources and SupportExplore our informational guides, or make a personal connection with someone experienced with T1D. The JDRF community has you covered. T1D Community
How to Find a Mental Health Professional
Finding the right medical team to help you manage your physical health when you have type 1 diabetes (T1D) is very important–but the importance of your mental health should not be overlooked. It is not uncommon for individuals living with T1D to experience burnout, depression and anxiety. Therapy might be a helpful step in developing coping skills to overcome these challenges and build resilience.
Whether you’ve been living with T1D all your life, or you were just diagnosed, you know that diabetes management impacts your day-to-day life in countless ways. You have to count carbohydrates whenever you eat, worry about blood sugar fluctuations and constantly think and plan about how to manage your disease. Transitioning into this routine, or even maintaining it after many years, can take a toll—and there’s no shame in getting some help.
When to Seek Help From a Mental Health Provider
It’s important to seek out the help you need in order to cope with the mental challenges that come with your T1D—but how do you know that a mental health professional is the right resource for you?
You may need some extra support if:
- You’re lacking the motivation to check your blood sugar or take your insulin and it feels like your mental health is getting in the way of diabetes management.
- You’re having trouble navigating your relationships with family and friends.
- You might be avoiding your loved ones because you are not up to being around other people.
- You’re forgetting about things that are important to you — not wanting to participate in hobbies or activities that you normally wouldn’t want to miss out on.
If you’re feeling this way, you’re not alone. If you are unsure whether this is the right option for you, talk with your healthcare team. Finding a mental health professional might seem like a big step, but it can make an even bigger difference.
Remember: The feelings and challenges you are experiencing—depression, anxiety and everything in between—are struggles faced by many people, whether they have T1D or not. It is very possible that a general therapist can provide you the help you need.
There is a chance that your endocrinologist does not have a recommendation for a mental health provider. Insurance may also present challenges and limit your options. You might want to consider checking if there are support groups at your hospital or doctor’s office or participating in JDRF’s Let’s Talk T1D – Connection Series to get support.
Seeking out help can be difficult at first, but it’s important to remember that you are not alone.
Diabetes and Sleep
Sleep in people with type 1 diabetes (T1D) and their caregivers is an ongoing issue. The quality and quantity of sleep (or lack thereof) has been talked about by people living with T1D for years; however, with the new devices and alarms now on the market, it has gained the attention of researchers and clinicians.
People with T1D have interrupted sleep on a regular basis – from needing to urinate during the night because of high blood sugars and then correcting (and then often waking to recheck blood sugar); waking to treat a low blood sugar and then having difficulty falling back to sleep; setting alarm clocks to check blood sugars; waking to high or low CGM alarms and then needing to treat those high or low blood sugars; pump alarms for occlusions, batteries, etc.; or even worries about T1D can keep you up at night.
Because parents of children with T1D manage their child’s blood sugar (and worry a lot more about diabetes than their children), they experience this same disrupted sleep.
Recent research has documented sleep loss because of diabetes disruptions, both anticipated (e.g., setting the alarm clock to check blood sugar) and unanticipated (e.g., pump occlusion alarms), of up to 10 hours a week.
This is important because sleep is important to good cardiovascular and metabolic health. In addition, children, adolescents, and adults who reported less sleep also have higher blood sugar levels. And, people with T1D who have sleep disruptions/lack of sleep are less insulin sensitive and require more insulin the following day after not sleeping well.
Tips for Better Sleep
There is no magic bullet to help people with T1D or their caregivers get better sleep. As parents you may always worry about your child’s blood sugar throughout the night, and as individuals with T1D you will always want to make sure you are safe throughout the night. But you can use some tips to get a better night (and more) sleep.
- You should first make sure that you (or your child with T1D) do not have any medical issues contributing to your sleep issues. Obstructive sleep apnea (OSA) has been highly linked with type 2 diabetes, but some newer research has shown that OSA is more common among people with T1D than those without diabetes. People with OSA stop breathing repeatedly and then start again throughout the night. Make sure to talk to your doctor to rule out a treatable sleep disorder.
- Talk to your healthcare provider about setting CGM alarms to a different setting at night for high and low blood sugars to reduce alarms.
- If your diabetes worries are preventing you from sleeping, talk to your doctor or your child’s healthcare provider. They can give you tips for managing blood sugars throughout the night and can assess if your fear of hypoglycemia could be a barrier to good rest.
- Get into a routine – try to go to bed at the same time and get up at the same time every day (including weekends).
- Get regular physical activity – being active during the day can help you fall asleep as well as improve your emotional well-being.
- Avoid caffeine, alcohol, or eating a lot right before you go to bed.
- Create a relaxing sleeping environment – make sure your bedroom is quiet, the blinds are shut (keeping the light out), and at a comfortable temperature.
- Keep electronics out of your bedroom, including computers, TVs.
Getting a good night’s rest is important for everyone’s health and well-being. Although T1D will interrupt your sleep at times, getting regular sleep is important for your long term health.