Adjusting to LIfe as a Youth with T1D
Adjusting to life after being diagnosed with T1D can be overwhelming as you are navigating through a new “normal”. Continue reading for some helpful tips to help you adjust to your life.
Tag Archive for: Diabetes
Improving Treatment Adherence for Type 1 Diabetes
Despite all the advances in medical science and technology, there is still no cure for diabetes. A person with diabetes has to live with it and manage it all their life. The challenge, of course, is being diligent and consistent with diabetes management. Type 1 diabetes is challenging to manage because it is so comprehensive. Research shows that the adherence rate for chronic conditions is about 50%. Despite extensive studies and research, that number has not changed significantly over the past 3 decades.
What is adherence? How does it apply to people with type 1 diabetes? How can a person with type 1 diabetes improve their adherence? And how can mental health professionals help? These questions were answered by Dr. Katherine Fan, a psychiatrist and pediatrician, at the 2016 Asian Outreach Day. Dr. Fan spoke with attendees about the factors that affect a person’s short and long-term dedication and commitment to managing their diabetes. Here’s a recap of her talk:
What is Treatment Adherence?
Adherence is the active, responsible, and flexible process of self care and self management with a goal of overall health and wellness. An adherent patient strives to achieve good health by working in close collaboration with health care staff, instead of simply following rigidly prescribed rules.
In the context of type 1 diabetes, adherence can also be known as “collaborative diabetes management”, “patient empowerment”, or “self care behavior management”. It can be useful to break down diabetes adherence into a number of areas:
- Glucose monitoring
- Administration of medication / insulin
- Dietary intake / carb counting
- Physical activity
- Follow up visits
This may help the patient, medical care providers, and support system prioritize and focus on which parts to work on.
Also, it is important to distinguish between Adherence and Compliance. Compliance implies a paternalistic relationship between and patient and his/her doctor. The patient takes a passive role in diabetes management, simply following doctor’s orders and doing what they say. On the other hand, adherence is more of a partnership between a patient and his/her doctor, as well as his/her support network. In fact, the patient is an active participant in planning and management.
Factors Impacting Adherence
What makes a person with diabetes more or less likely to adhere to their diabetes management plan? There are 4 main types of factors that diabetes adherence:
Treatment and Disease Characteristics
Complexity of treatment: The more complex the regimen, the lower the adherence rate. For example, if a patient has to take 10 different kinds of medication, 4 times per day, it is difficult to integrate this routine into daily life.
Duration of disease: The more chronic the illness, the lower the adherence rate. This may seem counterintuitive, but patients who have been diagnosed longer actually tend to have lower adherence rates than those recently diagnosed. Managing a condition over long periods of time may lead to a more casual attitude, or it may lead to burnout.
Delivery of care: Diabetes care can be delivered a number of ways: via a multidisciplinary team, a single general-care provider, or community treatment, to name a few. Research has shown that patients with diabetes seen specifically for their diabetes received more counselling on diet and adherence than patients with diabetes seen for an acute illness.
Intra-personal factors
Age: The teenage years tend to be hardest time to stick to a diabetes management plan. In contrast, parents of young children with diabetes are more likely to be adherent.
Self-esteem: Research has shown that high levels of self-esteem are related to high levels of adherence to physical activity regimens, adjustment of insulin doses and dental self-care
Self efficacy: Self-efficacy is defined as an individual’s belief in their ability to succeed specific or accomplish a task. A healthy sense of self-efficacy can play a major role in approaching goals, tasks, and challenges. The more a patient is able to advocate for him and herself, the better the outcome.
Stress: Stress and emotional state is also correlated with treatment adherence. The less stresses a person experiences, the more likely he or she will adhere to diabetes management.
Comorbid conditions: A comorbid condition is one that occurs at the same time as another illness or condition. Comorbid conditions such as depression, alcohol abuse, eating disorders, and others can adversely affect diabetes adherence. This effect is not limited to mental conditions: physical comorbidities also tend to lower the adherence rate of diabetes.
Inter-personal factors
Patient-provider relationship: The better the relationship between a patient and his or her provider, the higher the patient’s adherence rate will be. Patients and providers who communicate with each other tend to have improved relationships.
Social support: The benefits to have a social network for a person with type 1 diabetes are well known. Greater social support means better levels of adherence. For children and teens with type 1 diabetes, great parental involvement also means better levels of adherence.
Environmental factors
Stressors:The more stress a person has in their life, the harder it is to prioritize and manage diabetes
Conflicts: People with diabetes are as multifaceted as everyone else. Frequently, they are called upon to choose between giving attention to diabetes self-management or to some other life priority. They can face time pressures and social pressures during school events, work events, family events, holidays, and more.
Lifestyle factors: A person’s lifestyle can directly affect their diabetes adherence levels. Are they sedentary or active at work? Do they work long hours? Do they travel a lot? How much time do they spend in front of the television? Do they have a hobby? Different circumstances require individuals to adjust and maintain their diabetes management.
Socio-economic status: The economically disadvantaged and ethnic minorities may find it particularly challenging to visit healthcare providers or to live a healthy lifestyle. They may have limited access to fresh fruits and vegetables, small living spaces. Their schools may not provide opportunities for physical activity. What’s more, financial constraints may prevent them from going to a gym. Those factors, combined with their local climate, may make regular exercise challenging.
The Diabetes Adherence Team: What can we do?
There are four kinds of players on any diabetes management team: the Patient, the Parents (or family/friends), the Physician, and the Environment. All players have a role to play in diabetes adherence. When each “player” contributes in a positive way, it leads to better adherence and better outcomes. Here are tips on how each team player can work to enhance adherence and wellness:
The Patient
It takes a team to manage diabetes, but adherence starts with the patient. As the person with diabetes, you’re going to be living with your body for a long time, so take care of it! Here are some things the patient can do to make diabetes adherence easier:
- Be informed and understand your condition. Understand what it does to your body, and understand the complications that can occur if one does not manage the condition and stick to the plan.
- Identify your strengths and future goals. Don’t see diabetes as something that defines you, but something that is a part of you. You cannot change it but you can manage it.
- Stress proof your life. Work on areas such as sleep, nutrition, exercise, hobbies, mind-body exercise, healthy coping strategies, and more. Also, develop a support network of family, peers, school, religion, and/or support groups.
The Parents
Parents (and family) play a huge role in enhancing adherence. Here are some things parents can do to help their child with T1D:
- Understand the developmental needs of your child and recognize where they are. Remember, each child is different! At any given age, a child may be a different levels with respect to cognitive, motor, social-emotional, and physical skills.
- Be informed and stay involved. Invest in your relationship with your child! Additionally, help your child be informed and involved. Help educate your child’s school, as well as caretakers, friends, and family.
- Balance “take control” and “letting go”. We all want to be there for our kids, but we want our kids to take responsibility and be independent so that when they leave home, they can take care of themselves.
- Create a supportive home environment. Avoid judgement words such as “good” or “bad” sugar/A1C. Instead, use phrases like “in or out of range”.
- Foster a positive attitude about the condition.
- Model self care. Kids learn by watching!
- Focus on incentives, not threats or fear tactics. Consequences are for behaviors that you want to stop, while incentives are for behaviors that you want to foster.
- Don’t be shy about asking for professional help!
The Physician
Physicians play an important role. A physician who can help enhance adherence is one who:
- Keeps it simple and simplifies treatment regiments as much as possible
- Makes sure patients understand the consequences of non-adherence
- Connects with the patient in a way they understant
- Enhances patient communication via phone, text, etc..
- Leaves bias out of the relationship and avoids judgement. Patients already feel shame and guilt, and when they feel judged, it negatively affects the doctor-patient relationship.
The Environment
Some environmental factors are difficult, if not impossible, to control, so focus on things that you can control. For example, you may not be able to enhance access to health care, but you can provide diabetes awareness and education. You can educate not only yourself and your family, but also the broader community. Parents can help educate their children’s school teachers and friends. Adult patients can start support groups online and in real life. Technology can also improve diabetes awareness and education.
The role of Mental Health Clinicians
How can mental health clinicians help patients achieve overall wellness?
- They can support the patient and the patient’s family, not just during diagnosis, but throughout their journey.
- Acceptance is the first step towards adherence. Mental health clinicians can help patients work on accepting their condition and coping with it.
- Mental Health Clinicians can help the patient process some of the emotional factors that come with diabetes: anger, fear, guilt, shame, stress, sadness
- They can facilitate communication and conflict resolution, between you and parents and friends, between doctor and patient
- They can help identify other emotional disorders that can complicate diabetes management, such as depression, anxiety, eating disorders, or substance abuse.
Mental health clinicians can provide treatments such as cognitive behavioral therapy, motivational interviewing, behavior modification plans, or family therapy. Diabetes affects the mind as well as the body. Mental health is an important step towards the journey to your best self. Never be afraid to ask for help from a mental health professional!
Type 1 Diabetes and Your Relationship: How to Address Common Challenges
By Becky Upham
Medically Reviewed by Rosalyn Carson-DeWitt, MD
Managing type 1 diabetes can take a physical, emotional, and financial toll on your relationship, whether you’re dating, married, or in a long-term partnership. Although every relationship has challenges, there are some issues that can seem especially tricky when you have a chronic condition like type 1 diabetes.
A qualitative study published in March 2013 in Diabetes Care found that people with type 1 diabetes and their partners feel that the condition impacts their relationship, posing both emotional and interpersonal challenges — and that partner support is a vital source of support for those living with the condition.
If you find that your type 1 diabetes has taken a toll on your relationship, there are steps you can take to help reconnect with your partner and get back on track.
Common Relationship Challenges
Here are some common issues that people who have type 1 diabetes and their partners may face, as well as tips to help address these concerns and maintain a healthy relationship.
Lack of support Diabetes requires many daily management tasks. If your partner isn’t aware of what all those tasks are and why each is important, it can be difficult for them to support you, says Mark Heyman, PhD, a certified diabetes educator and the founder and director of the Center for Diabetes and Mental Health in Solana Beach, California. “I encourage people to educate their partner or have a healthcare team who can help educate their partner about each step in managing type 1 diabetes. Your partner needs to be able to offer support — not only when you aren’t feeling well, but also in the day-to-day,” he says. “That means support in making healthy choices when it comes to eating, exercise, and other activities. It can be really hard to manage type 1 diabetes when you feel like you’re all on your own.”
Feeling micromanaged On the other hand, you may sometimes feel like you’re receiving too much support. It may seem like your partner is constantly asking you about how you feel and what you ate, and monitoring your every move. “It usually comes from a place of caring and not always knowing how to help,” says Dr. Heyman. In those cases, it’s important to let your partner know what’s helpful for you and what’s not helpful, he says.
“For example, you might tell your partner, ‘It’s really not helpful for you to be looking at my blood sugar numbers all the time and commenting on them. What would be more helpful for me is if we could plan time this weekend to take a walk together or prepare a healthy meal,’” says Heyman. “That does two things: It helps you set boundaries with your partner around how they interact with you about your condition, and it also gives them a concrete way to help you manage type 1diabetes, which can help relieve some of the anxiety your partner may have,” he says.
Lack of spontaneity Because type 1 diabetes involves a lot of planning, it might feel like there isn’t enough spontaneity in your relationship. While it may feel counterintuitive, doing a little planning in advance can help you be spontaneous. “Having supplies packed and ready to go can help if a last-minute trip or fun activity comes up,” says Heyman. Keep extra insulin and anything else you might need in a bag, he suggests. “If you want to take off on a weekend road trip, it’s nice to know you can just grab that bag and have everything you need to stay healthy,” he says.
“If one of you would like to be more spontaneous, ask the other person, ‘What can we do together to make you more comfortable with that?’” he says. “You may be amazed at the ideas that can come about if one of you just asks the question.”
Intimacy challenges A study published in May 2018 in International Journal of Environmental Research and Public Health found that people who have type 1 diabetes may be at an increased risk of sexual disorders. Communication is key in helping with these issues, says Heyman. “You have to let your partner know how you’re feeling, just as in any relationship,” he says.
“Lots of things can impact the desire for intimacy. There are times when you just don’t feel well. Maybe there are fears about having low blood sugar while you’re being intimate,” he says. The more you can communicate about what you’re experiencing and what your partner may be able to do to help, the better. “Being able to talk about it may lead to increased intimacy; often communication can make you feel closer to your partner,” says Heyman.
Financial strain The cost of managing type 1 diabetes can vary, but according to the American Diabetes Association, people who have diabetes spend approximately $9,600 a year on diabetes-related medical costs. This may include anything from doctor visits to medications and supplies. These extra expenses can add stress to your relationship. Communicating and planning are key, says Heyman. “Have a really frank conversation about your financial health and what your goals are. How does diabetes impact this? How can we manage it?” he says.
Sometimes there can be resentment if one of you feels “stuck” in a job you don’t like because you can’t afford to lose your health insurance. Talk about the situation and brainstorm together, suggests Heyman. “Is there a solution that can be agreeable to everybody, and if not, can you find a compromise?” he says. Bottom line: Staying healthy is critical to living your best life.
Dealing with low blood sugar When you’re experiencing low blood sugar, you don’t always act like yourself, says Heyman. “You may become aggressive or defiant,” he says, which can be concerning, medically dangerous, and stressful. “It’s helpful for couples to set rules around how they’re going to deal with an episode of low blood sugar — before it happens,” he says.
Sometimes you may be in the middle of a low blood sugar episode and not realize it, or think you’re just fine and your blood sugar will correct itself, he says. Developing rules that are “non-negotiables” are a good idea.
“For example, if your partner thinks your blood sugar is low, agree that you’ll check it. If your partner sees that your blood sugar is low or if you’re exhibiting signs that it is, agree to take the snack they offer you without question,” he says. “Agreeing and sticking with rules like this can go a long way in easing tension and letting your partner know that their concerns are heard and you’re going to be okay,” says Heyman.
Find Support — for Both of You
Your partner needs to understand that sometimes you just don’t feel well. “High blood sugar doesn’t always feel good and low blood sugar is not only dangerous, it just doesn’t feel great,” says Heyman. “That can be a hard thing to communicate to people; diabetes can be a very invisible disease. Someone may look fine even if they’re not feeling well, and explaining what the different symptoms feel like can be challenging.”
Seeking social support, either in person or online, where you can get other couples’ perspectives on what these things are like and how they handle them, is a good idea, says Heyman. “Online communities are a great source of support,” he says. Beyond Type 1 and Type One Nation are two helpful resources for people with type 1 diabetes.
“Diabetes can be overwhelming and frustrating. You can experience lots of emotions that go along with that,” says Heyman. Having a partner you can count on and who can understand and empathize can go a long way.
Diabetes Burnout
WRITTEN BY: Mark Heyman, PhD, CDE
Have you ever felt like you are just “done” with diabetes?
Are you sick and tired of doing everything you’re supposed to do, but feel like your blood sugar is still out of control? Do you feel like you don’t care anymore about managing diabetes and want to just give up? If any of these things sound familiar, you may be experiencing diabetes burnout.
Diabetes burnout is a state in which someone with diabetes grows tired of managing their condition, and then simply ignores it for a period of time, or worse, forever. Unfortunately, diabetes burnout is common, and most people with Type 1 diabetes (T1D) have experienced it at some point in their lives. After all, if you have T1D, you have to be “on” 24/7, and as much as we would like one, there are no breaks. People who experience diabetes burnout aren’t necessarily depressed and are certainly not lazy. In fact, almost everyone with diabetes, even those experiencing burnout, want to live long healthy lives. But sometimes diabetes can feel overwhelming and folks can get burned out from all the hard work.
What does diabetes burnout actually look like? While it may look different in people, there are some common signs and symptoms. These include:
- Strong negative feelings (e.g., overwhelmed, anger, frustration) about diabetes
- Feeling controlled by diabetes
- Isolation, or feeling alone with diabetes
- Avoidance of some, or all diabetes management activities and being unmotivated to change this behavior
If you have T1D and are feeling burned out, please know that there is hope! Diabetes is hard work, and until we have a cure, it will continue to be hard. However, there are some thing you can try that can help you overcome, and even prevent, feelings of burn out.
Manage your expectations
People with T1D tend to be really hard on themselves. They expect a lot from themselves, and when they don’t meet their own expectations, it can be frustrating. Anyone who lives with T1D knows that it is almost impossible to do everything “right” all the time. And even if you do everything “right”, your blood sugar can have a mind of its own and do some crazy things. If you expect perfection, and perfection is not possible, it’s normal to want to give up. Instead, try cutting yourself some slack. It’s ok to strive for perfection, but it’s important to cut yourself some slack sometimes and be ok with slipping up. And remember that sometimes, having wacky blood sugars is part of having diabetes.
Take small steps
Diabetes takes a lot of hard work and sometimes everything can seem overwhelming. When things get overwhelming, you may not even know where to start. Instead of tackling a big task all at once, try breaking it down into small steps that you know you can accomplish. For example, telling yourself you want to reduce your A1C from 8% to 7% may sound like a Herculean task. However, if that is your goal, identify the specific things you can do today to get there. For example, you can check your blood sugar at least 4 times a day and count carbohydrates at every meal and take insulin to cover. Taking small steps can make achieving big goals seem a lot more obtainable.
Get support
Feeling like you’re alone in your life with diabetes is a big risk factor for diabetes burnout. With diabetes, isolation is one the biggest risk factors for becoming burned out. If you feel that nobody understands what you are experiencing or that you are the only person with diabetes that feels this way, life with diabetes can be a lonely place. While feeling supported does not make T1D go away, it can make it easier to live with. Getting support, encouragement and empathy from others can be a critical part of staying motivated to manage your diabetes. Sometimes the people in your life may not know what kind of support you need. Be clear with these people what would be most helpful and what you want them not to do. Remember that other people with T1D can also be a great source of support. These are the folks who know exactly how you’re feeling, because, at some point, they have probably felt the same way. If you don’t know anybody else with T1D, there are resources that can help. Many communities have meet-ups for people with T1D and there is an active diabetes online community on social media.*
If you feel burned out with T1D, you are not alone. Just remember that many people have overcome their burnout and are able to live long, happy and healthy lives with T1D. If you are experiencing diabetes burn out and you feel like you can’t deal with it on your own, it’s important to get help from a mental health professional who understands diabetes. Talk to your endocrinologist to see if s/he can recommend one in your area.
