A diagnosis of diabetes is a completely life-altering experience.
Your mind is constantly buzzing with thoughts of needles, prescriptions, doctor's appointments, ketones, Dexcom G6 adhesive tape, nutrition labels, worries about the future, basic arithmetic, deductibles, juice boxes, and wondering if you'll ever sleep through the night again.
No matter how you manage, there's no way to avoid a lot of work.
Preparing a syringe or insulin pen each time you eat can be taxing. Even if you are on a pump, removing the old site, preparing a new one, ensuring the cannula inserted properly, and adhering an Omnipod adhesive overlay can be hard.
Testing your blood sugar by finger pricks can leave your hands feeling like pin cushions. Using a continuous glucose monitor (CGM) can alleviate some of the struggles of a manual glucometer, but technology is imperfect, and site changes can be tricky.
To maintain good control of your blood sugars, you have to put forth a lot of work and effort. You have to constantly be aware of your sugar to prevent it from going too high or too low.
Adjusting carb ratios, insulin sensitivity factors, correction factors, and basal rates takes a lot of work and stress. Even once you have those correct, they can change again with growth, hormones, or illness.
You don't even get a break from it when you sleep.
Sometimes you can do all the right things, and things will still go wrong.
If you are doing all of these things for yourself, or if you are a caregiver of a child with diabetes, it is easy to see that diabetes distress is a real concern.
What is Diabetes Distress?
Diabetes distress is when the mental load of diabetes is so enervating that you lose your ambition to keep yourself or your child healthy. You might feel angry and unmotivated to manage everything. You may feel lonely and isolated. You might even start making unhealthy choices or avoiding checking your blood sugar as often as your healthcare team recommends.
Combating Diabetes Distress as a Caregiver
If you are a caregiver of a young child with diabetes, the idea of letting them out of your sight for even a few minutes can seem impossible.
Allowing others to help is a great way to relieve some of the pressure on you. Some ideas of people who could help with your child so you can take a break:
- Your spouse or co-parent. If your child has another parent in the picture, make sure both of you understand and take responsibility for managing your child's diabetes. If no one else pans out, you can at least give each other breaks from constantly watching your child's blood sugar.
- A trusted family member or reliable friend. Find out if you have any family or friends willing to learn the basics to watch your child for a couple of hours. Teach them the essentials. If you're concerned, plan your departing times for right after your child has eaten or been bolused for food. Stay close and keep your phone on. If things go well, you can increase the time as both parties feel comfortable.
- A babysitter with diabetes experience. Perhaps a neighborhood teen has had Type 1 diabetes for several years. They might be a good fit to watch your Type 1 child since they will be familiar with what to do in emergency situations.
- A fellow Type 1 parent. No one will understand your situation as well as another Type 1 parent. It's a win-win situation because you can trade babysitting with the other Type 1 family, and your child will be able to play with a friend at the same time.
There are a few ways you can meet others in your same situation. You can find and connect with local Type 1 communities on social media. You can meet other Type 1 families at diabetes awareness events or walks. Your school nurse may even be able to introduce you to other parents of Type 1 kids in the area.
Combating Diabetes Distress in Yourself
If you have Type 1 diabetes yourself and are experiencing burnout, it can be more difficult to take a break since avoiding your diabetes management can have dangerous consequences quickly. Here are some alternative ways you can deal with diabetes distress.
- Ask for help. See if someone will handle the mental load of diabetes for you for the day. Allow someone else to do your calculations, measurements, and even injections if they're willing. A significant other, a parent, a friend, or a sibling may be willing to take this burden off you for a period of time.
- Loosen your expectations. You don't want to go into DKA, but there is typically some wiggle room in your target range that would allow you to relax a little while still avoiding ketones and the ER. Let go of your expectation to be perfect, and give yourself some grace and some slack.
- Talk to your doctor. Let your endocrinologist know you are having a difficult time. They will have resources for you to help encourage you and lighten your load.
- Vent. Call someone up and let them know what's on your mind. Let others know you're struggling. Diabetes is a lot for you to carry alone. Sometimes just vocalizing your worries or stresses helps them not seem as intimidating.
Asking for help can be hard, but so is managing diabetes. Take the time to ensure your mental health and physical health are both given the care they need.