Type 1 Diabetes and Your Relationship: How to Address Common Challenges

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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.

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Anxiety + Diabetes

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WRITTEN BY: Kristi Caporoso, MSW, LSW

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

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.

What ifs

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.

Checking

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:

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.

REFERENCES

  1. HTTP://WWW.DICTIONARY.COM/BROWSE/ANXIETY?S=T
  2. HTTPS://WWW.MINDFUL.ORG/JON-KABAT-ZINN-DEFINING-MINDFULNESS/
  3. HTTPS://BEYONDTYPE1.ORG/T1D-GUIDE-MENTAL-HEALTH-CARE-PROVIDERS/

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Diabetes Burnout

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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.

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