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.
Outpatient therapy is a great option to consider for yourself of your child if either of you have found that you have been experiencing trauma after learning about a T1D diagnosis.
Depression is very common in youth who have T1D, if you are a parent who is concerned that your child may be having a difficult time, there is treatment and resources available.
Parenting a youth with Type 1 Diabetes can be tough, when a mental health diagnosis has also been ruled in it can make it difficult to manage both aspects. Anxiety is a common among those with T1D, if you think that your child may be experiencing symptoms of anxiety there is lots of helpful resources!
4 Ways to Help your Child Deal with T1D Management
What Is Motivational Interviewing? It is one of the most effective ways to decrease ambivalence in clients suffering from long-term illness and the incredible burden associated with it. Many of these skills focus on simple bite-size steps that will begin building self-esteem and feelings of hope. Actively practicing these skills can greatly increase the level of success your child feels over time.
1. Create achievable, realistic goals.
Why? When you place too much on someone’s plate and pair it with severe negative downside, you have a solid recipe to create indecision and apathy.
How? If your child is struggling with daily tasks, don’t talk about things like the A1C blood test constantly. Instead, focus on the next meal, day, or week to help create the right habits.
2. Empower your child rather than manage your child.
Why? Success does not mean blood sugar within the desirable range; it means helping your child take active steps required to create the right habits. Exclusively trying to manage your child’s outcome based on good blood sugar or other fact-based outcomes can put a lot of uncontrollable elements onto your child’s plate and ultimately create hopelessness or low self-esteem.
How? As you talk to your child, work to identify areas of pride or success and incorporate asking about these items while you check in on insulin levels or carb intake. Additionally, try to elicit ideas from your child on how to manage a certain situation (e.g. how much to eat or how much insulin to take). This will support their confidence in their ideas instead of always looking to you for the answers.
3. Listen to your child.
Why? Your child has a 24/7 job that they did not apply for and they cannot quit. Creating an atmosphere that allows your child to safely explore conflicts and face difficult realities is critical to successfully managing T1D.
How? Show empathy, and then communicate your empathy. As a parent raising a child with T1D, it can be easy to hyper-focus on the next blood sugar reading or meal. Simply saying, “That makes sense. I can see how frustrating that would be.” can go such a long way.
4. Roll with Resistance.
Why? Managing T1D can be extremely discouraging. Your child might do everything right and still have a high blood sugar reading at the next meal. Helping your child understand that managing T1D is a roller coaster and not every blood sugar reading will be in the desirable range will help tremendously.
How? Normalize your child’s experience: “You ate the right amount, took the correct dose of insulin, and you still have high blood sugar. That happens all of the time.” Also, spend your mental energy on controlling what you can control and let everything else run its course.
These tips are helpful and supported by research but can be incredibly hard to implement consistently. If you ever need help or want someone to talk to, give us a call at (612) 223-8898 or schedule an appointment here.
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.
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.
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.
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:
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.
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!
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.
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!
We recently held our annual mySugr holiday celebration. What a good opportunity to talk about drinking alcohol with diabetes and the effect on blood sugar, right?
You can probably imagine it. Some snacks to nibble on, a live DJ spinning the (digital) wheels of steel, and some tasty adult beverages. In a situation like that, It’s all too easy to get caught up in the atmosphere and not think about your blood sugar. That’s totally natural – who wants to think about diabetes when you’re having a good time? I certainly don’t. But does drinking alcohol affect your diabetes and blood sugar? Is it something to be concerned about?
Here’s the deal. If you don’t pay some attention to alcohol and learn how it interacts with your diabetes, it will stop your party in one way or another, either during the dance-off or perhaps more commonly, hours later when you’re sound asleep and dreaming about your fancy moves. Cruelly, that’s when you’re least expecting it and when you’re at your most vulnerable.
Having diabetes is no reason to avoid drinking if it’s something you’d like to do. But you should understand how it works so you can do so safely. I’m not personally a big drinker, but I’ve done some digging and hope to share a few bits of useful information to help keep you safe.
We’re all different, but basics are basic…
One of the most important things I can share is that we’re all different, especially when it comes to our diabetes. Many people also differ in how they respond to alcohol. So like everything – your mileage may vary.
In any case, there’s no harm in talking about some of the basic ways alcohol affects metabolism, and what it does to blood sugar. Ready?
Alcohol inhibits glucose release from the liver. So what?
The presence of alcohol in your system can cause low blood sugar. Why? Because it plays games with your liver. How? Your liver is a big reserve of sugar, and throughout the day and night, it normally releases glucose (sometimes even when we don’t want it to).
But when alcohol is present it switches focus to clearing alcohol from your bloodstream and forgets all about releasing glucose. That liver is no good at multitasking.
If there’s less sugar in the blood, you’ll need less insulin (or you’ll need to eat more). Aha! Makes sense, right?
And the time delay…
Each alcoholic beverage takes between 1 to 1.5 hours to process through the liver. During that entire time, your risk for lows is increased. So if you have two drinks, you’re looking at three hours. Three drinks and it could be more than four hours. Can you see how quickly the hours add up? If you’re not planning way ahead, this can easily sneak up and catch you off guard during the middle of the night.
Many alcoholic beverages (beer, wine, mixed drinks, etc.) contain carbohydrates, which will quickly increase your blood sugar and usually require a bolus. But the bolus should be calculated very carefully, because although your blood sugar may go up quickly, the alcohol is also setting the stage for a fall later on.
A tip from Gary Scheiner.
Gary Scheiner, award-winning Certified Diabetes Educator and author of “Think like a pancreas” offers a guideline for insulin pump users. He suggests that the basal rate should be reduced by 30-50% for 2 hours for each alcoholic drink. Meaning if you had three drinks, you’d set this temp basal rate for six hours.
Ok, at first glance this might sound a bit complicated. Actually, you’re right, dealing with diabetes and alcohol is a bit complicated. And as mentioned at the beginning, everyone reacts differently, which means it can be really hard to find clear and simple instructions on what to do. So like almost everything else with diabetes, you have to start with some basic knowledge (which I hope I’ve given you here) and experiment (safely).
Things to Remember:
- Be very conservative and cautious if you use insulin to lower your blood sugar when drinking, and test often.
- Have a meal or snack with carbohydrates when you consume alcohol.
- Remember to keep glucose tabs or other fast-acting glucose with you at all times.
- Dancing? Oh yeah! But remember, it counts as exercise, which also lowers blood sugar.
- Consider going to bed with a blood sugar higher than normal if you’ve been drinking. Keep in mind that the drop in BG is often dramatically delayed and you’ll want to play it extra safe when sleeping.
- Alcohol can make it hard to notice symptoms of a low. Check your blood sugar often. Check more often than you think you need to. Have I mentioned that you should check often?
- Drunkenness and lows have similar symptoms. It makes sense for a few of your closest party buddies to know about your diabetes and how to help in case of trouble.
- Wear your medical ID at all times (you do have a medical ID, right?).
A few more things that are good to know:
- When you’ve been drinking, a glucagon rescue shot may not work!
- I am going to repeat that – a glucagon shot may not work when your liver is busy clearing alcohol from your system!
- You might need to hear that a third time… glucagon may not save you if you pass out from a low while drunk.
- If you’re a woman, you typically process alcohol a bit slower than your male counterparts.
There is much more to know about diabetes and alcohol, but I hope that this has been a helpful start. There seems to be precious few community-based resources out there that cover drinking with diabetes. One I know of is drinkingwithdiabetes.com, and they even have a couple of nice infographics you can download.
I’d love to hear if you know of any other helpful resources. If so, please leave a comment.
Have fun out there, and stay safe!
And here is where I am also obliged to officially advise you to discuss your specific situation with your doctor.
Sports used to be a big part of Jonathan Tengi’s life. The 14-year-old from Allendale, NJ, played soccer, basketball and baseball, and swam on a team during the summer. Then Jonathan was diagnosed with type 1 diabetes. His active schedule came to a complete halt — he even missed the last soccer match of the season.
Three weeks later, with his blood sugar levels under better control and a diabetes management plan in place, Jonathan was back in the game again, in time for basketball season. He was hitting his stride, learning to live with diabetes — something he says he couldn’t have done without his teammates.
“Playing sports was a huge help physically and mentally, because when I was diagnosed, it threw everything off. Being able to get back into sports really helped me keep my mind off my diabetes and feel more normal,” he says.
Diabetes experts agree: Physical activity is vital to staying healthy for all kids, including those with type 1 diabetes. Here’s why and what you need to know to even the playing field for your child.
Strong Minds and Bodies
Exercise helps kids concentrate in school. It’s good for their hearts, for building muscles, and for controlling weight and stress. The optimal amount of exercise for children with type 1 diabetes — about an hour per day — isn’t any different than for other children, says Sheri Colberg, Ph.D., an exercise physiologist and Professor of Exercise Science at Old Dominion University in Norfolk, VA.
“A chronic disease can have a negative influence on how children view themselves, but being physically active may help counteract that by increasing self-confidence,” Colberg says.
Participating in team sports had an added bonus: It gave Jonathan a chance to educate his friends about his diabetes. His friends could get help if they saw Jonathan experiencing signs of low blood sugar, such as dizziness, confusion, excessive sweating, or weakness.
“Most of my friends were playing sports with me, so they were able to learn and tell other friends and teammates about it, and by word-of-mouth, it helped everyone,” Jonathan says.
Your child doesn’t have to be on a team to be physically fit, though. Playing tag, riding bikes, or walking are great ways to work in some daily exercise. Keep it interesting by suggesting new hobbies from time-to-time, such as hiking, karate, or hip-hop dancing.
“Learning skills and doing a new activity helps kids develop,” Colberg says. “The more things they learn, the more well-rounded they become.”
Your Game Plan
TALK ABOUT DIABETES. Because the length and intensity of exercise can affect blood sugar levels, coaches and teachers need to know how to handle an episode of hypoglycemia (low blood sugar). It can be helpful if teammates are aware as well. Talk with your child’s diabetes care team before he or she starts any new exercise program. It’s important to monitor how physical activity affects blood sugar; adjustments to food and insulin may be necessary.
KEEP SNACKS HANDY. Keep a variety of snacks available that your child likes, such as an energy bar, fresh fruit, yogurt, or cheese and crackers. Depending on the type and duration of the sport, you may want to carry food for before, during, or after the activity.
ROOT, ROOT, ROOT! As for Jonathan, he continues to play several sports and to root for his favorite team, the New York Mets. “They were really bad last year, but they’re picking themselves up, just like I had to do with my diabetes, and I hope the same good things happen for them,” he says.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.
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.
State(s) of Fear
Anxiety has become one of the most commonly diagnosed mental illnesses in the United States. It seems everywhere you turn, someone is talking about it. Whether it’s their child or themselves that are afflicted, everyone and their mother seems to suffer from some level of anxiety. There has been a particular uptick in the level of anxiety reported in children and adolescents. While mental health professionals are trying to put their finger on what exactly is contributing to this – technology, political climate, homework – you don’t have to dig deep to find a reason for increased levels of anxiety in those living with Type 1 diabetes. To begin unpacking this issue, first let’s take a look at what the “A” word actually means.
What is anxiety, exactly?
A certain level of anxiety is healthy – necessary, even. It is what prevents us from engaging in dangerous behaviors, and what keeps us motivated to accomplish the things we need to do. The dictionary definition of anxiety reads as follows: “distress or uneasiness of mind caused by fear of danger or misfortune.”1 When this distress gets too high, or is disproportionate to the situation provoking it, the person tends to suffer from anxiety instead of benefitting from it.
Some of the more common forms of anxiety disorders are:
Generalized Anxiety Disorder (GAD)
A prolonged state of worry or tendency to worry about any and everything. GAD can have physical manifestations, such as GI problems and difficulty sleeping. Someone living with GAD will have a tendency to view everything through a lens of anxiety, and be bombarded with “what-ifs?”
Panic disorder can occur after a person experiences one or multiple panic attacks, and is living in constant fear of the next one occurring. Everyone experiences panic attacks in different ways, but the most common symptoms are shortness of breath, feelings of impending doom, de-personalization (that feeling when you are floating outside your body), and heart palpitations, to name a few.
Social Anxiety Disorder
Basically what it sounds like, social anxiety disorder is when people experience extreme discomfort and anxiety around other people. This anxiety is rooted in the fear of what others think of you, or of embarrassing yourself or looking foolish.
Diabetes & Anxiety
T1D and anxiety are made to exacerbate one another. The fears and thought patterns that fuel anxiety are inherent to managing diabetes. On the flip side, struggling with anxiety can wreak havoc on your blood sugars. The more time I’ve spent working with and trying to pick apart anxiety disorders, the more I’ve realized how counterintuitive diabetes management is to anxiety levels.
Running through the back of every anxious mind is a pestering whisper of what if? “What if I die?” “What if I embarrass myself?” “What if I fail?” These persistent questions can be crippling. However, when managing diabetes, it is often necessary to ponder what if. For example, I am about to pre-bolus for my dinner on my way home, but what if I get stuck in traffic? I am preparing for a run by adjusting my dosage and snacking, but what if it rains?
At the forefront of diabetes management is planning. Unfortunately, planning often invites what ifs, and what ifs can easily manifest into anxiety. When you are living with anxiety, it is often difficult to differentiate between rational or helpful what ifs and irrational, detrimental ones. Considering the rain or traffic while planning your insulin dosage can be productive, while repetitively pondering the possibility of going low and passing out during your exercise routine is not.
Living in the present
Similarly, planning for diabetes care can interfere with being present in the current moment. In recent years there has been growing evidence of the efficacy of mindfulness-based stress reduction (MBSR) and meditation for treatment of anxiety2. Much of our worry is rooted in what may or may not happen in the future. But it is hard to focus on the present moment and often difficult to be spontaneous when you’ve got insulin on board (IOB), sensors with downward-pointing arrows, and a fixed amount of juice in your handbag. Even the actual practice of meditation can be interrupted by alerting insulin pumps and CGMs. As mentioned above, diabetes management involves a lot of planning. And a lot of planning means a lot of future-oriented thinking.
Much like planning, with diabetes checking is essential. Checking you blood sugar, checking your IOB, checking your low supplies. But for someone with anxiety, checking can spiral into an obsessive ritual. People suffering from obsessive-compulsive disorder (OCD) have certain rituals they perform to quiet obsessive thoughts that repeatedly run through their mind. Because checking is so essential for diabetes management, it’s easy for someone susceptible to anxiety to fall into a pattern of over-checking. Picture this: you feel anxious about going low, check your sensor data and see no downward arrows. You feel a temporary wave of relief. But moments later, those thoughts recur. They get louder and louder in your head, until you have to check your sensor again – still no downward arrows. You see how this can fall into a negative thought-behavior cycle.
Where do we go from here?
Fortunately, much like type one, anxiety is manageable. But it takes work. If you feel like anxiety is interfering with you or your child’s everyday life, consider seeing a therapist. There are many therapists who have experience working with people with chronic illness. And if they don’t, BT1 has a helpful guide to teach them about type 13.
Where to start: finding a therapist
Your primary care doctor or pediatrician may have some referrals. Or, if you feel comfortable, ask around. It’s more than likely that many people in your life see a therapist and you have no idea. Or, if you have private insurance, you can try calling the “Member Services” number on the back of the insurance card and asking for referrals to local in-network behavioral health providers. There are also many ways to locate a therapist online:
- Psychology Today: https://www.psychologytoday.com/us
- NASW: https://www.helppro.com/nasw/BasicSearch.aspx
- SAMHSA: https://www.samhsa.gov/
If you have Medicaid (or Medical, or your state’s equivalent), your state’s Division of Mental Health and Addiction Services should have resources for local community mental health centers that accept this insurance. Your therapist or primary care doctor will also be able to suggest if you should consult a psychiatrist. A psychiatrist can prescribe medications for behavioral health concerns.
While diabetes and anxiety may make a great pair, you don’t have to constantly live at their mercy. As you learn to accept and manage your anxiety, you’ll learn how to live well with it. It won’t be easy, and there’s a lot of trial and error. Of course, having type one means you’re used to that! And always remember, you’re not alone in this.