Coping with Common Emotions Around Type 1 Diabetes Screening

If you or a family member has type 1 diabetes, you may be considering screening. Type 1 diabetes screening can let a person know their risk of developing the condition, even if they currently have no symptoms.

Making the decision to screen yourself or your child can be personal and can bring up a range of emotions, such as guilt, stress, and worry. And some people aren’t sure how exactly they’d cope with a positive result.

Here, experts share insight on how to handle the emotional aspects of type 1 diabetes screening — whether it’s for yourself or a loved one.

Ways to Handle the Screening Decision

Even just considering screening can bring up tough emotions.

Brush Up on the Facts to Combat Guilt

Because family history increases risk — and because children can develop it — parents with type 1 diabetes may feel a sense of guilt.

“Some parents of a child with type 1 state they do not want the guilt of knowing it was them that passed the genes down to their child,” says Megan Porter, R.D., a dietitian and certified diabetes educator at Randall Children's Diabetes and Endocrinology Center in Portland, Oregon.

If you’re a parent wrestling with guilt, it may help to learn more about the condition. Type 1 diabetes doesn’t have a known cause. It’s an autoimmune condition — you didn’t do anything to cause it for yourself or your child.

Consider Which Choice Will Give You Peace of Mind

There may also be some stress or anxiety around the potential of having a lifelong condition. “A positive screening result means [the person] will require frequent sugar monitoring, specialist visits, and even learning to apply injections,” says Tatiana Echeverry, M.D., an internist at the Medical Offices of Manhattan in New York City.

While the prospect of managing diabetes may seem overwhelming, some people would rather know early. In fact, early detection can help prevent a life-threatening condition called diabetic ketoacidosis (DKA).

“People who do want to know may want to have a better understanding of what the future holds and what they can do to prepare if the result is positive, including avoiding hospitalization,” says Porter.

Tips to Reduce Stress Around Screening

If you decide to screen, know that the process can be simple — blood is drawn and sent to a lab — but it may feel stressful for you or your child.

“It can be challenging to balance the benefit of early detection with the potential for unnecessary medical distress,” says Echeverry.

To deal with any stress you have while undergoing the test and waiting for the results:

• Acknowledge your feelings and that they’re a common and reasonable reaction to uncertainty.
• Seek social support from trusted family members or friends about your worries.
• Take time for self-care when you can. This may mean doing activities that help you manage stress, such as exercise, meditation, or socializing.

If you or your child tests negative, it can bring a sense of relief. However, follow-up screening may be recommended in the future.

What to Do If the Screening Result Is Positive

If you or your child screens positive for type 1 diabetes antibodies, there are several steps you can take that can help you cope, both practically and emotionally:

Learn as Much as You Can About Type 1 Diabetes

The more you know, the more empowered you may feel. Your healthcare team may provide resources to help you learn the basics of how type 1 diabetes develops and how to manage it. You can also go to your local library to do more research, or read our medically reviewed content.

You or your child may not need to worry yet about managing blood sugar (glucose) levels. But getting to know some basics may help you feel prepared for the future. This could include how to count carbohydrates and how to make dietary changes to keep blood sugar levels more stable.

See Your Primary Care Provider

Even before diabetes symptoms appear, a primary care provider can prescribe a blood sugar meter so you can monitor blood sugar levels over time. This can help you get to know your or your child’s blood sugar level patterns and see signs of concern.

They may also provide a prescription test for ketones. Ketones are chemicals in your blood that can signal DKA. Testing for them can help you prevent a medical emergency.

Ask About Treatment to Delay Onset

“There is an FDA-approved therapy to delay disease onset in those most at risk,” says Mark Atkinson, Ph.D., American Diabetes Association Eminent Scholar for Diabetes Research at the University of Florida in Gainesville.

The medication, called teplizumab, is shown to lower the risk of severe long-term complications in those with type 1 diabetes.

Connect with the Type 1 Diabetes Community

Other people with type 1 diabetes can help you feel that you're not alone. They may also be able to share how they handled challenges of living with the disease.

Ask your doctor if they can recommend a local support group, or talk to others here in our community.

Talk to a Mental Health Specialist

If you’re struggling with guilt, shame, or anxiety, talk to a licensed mental health counselor who specializes in working with people who have chronic health conditions. You may be able to find one near you using the American Diabetes Association Mental Health Provider Directory.

It’s understandable to feel anxious about type 1 diabetes screening, but many people feel it’s worth the short-term stress. You’d be providing yourself and your family with valuable information, whether the test comes back positive or negative.

If it’s positive, you can begin planning and even explore delaying onset, instead of waiting for symptoms to appear. Porter says, "This can make the person or family feel more empowered to step into the diagnosis ready to take on the challenge of the daily management of their disease.”