Mentally Coping with Testing Positive for T1D Autoantibodies

Living with a chronic condition like type 1 diabetes (T1D) can impact your mental health and well-being. However, anxiety and depression can come even before a diagnosis. With diabetes autoantibody testing, you may find yourself dealing with unanswered questions, several unknowns and fear. In spite of this, there are insufficient mental health resources available to help people navigate all this new health information and a possible future T1D diagnosis.

What does it mean to test positive for autoantibodies?

As we continue to learn more about the causes of T1D and its diagnosis, we’re learning that T1D actually exists on a continuum that begins with markers of the disease known as islet autoantibodies.

Islet autoantibodies are proteins developed by the immune system that are associated with T1D but not any other form of diabetes. These autoantibodies show an immune response to the islet cells of the pancreas—the organ that produces insulin.

Over 95 percent of people with people with newly-diagnosed T1D will have at least one islet autoantibody. If you have more than one autoantibody, your risk of developing T1D is exceedingly high.

Testing positive means a higher risk for developing T1D but isn’t a diagnosis. You may continue developing T1D over time, but with proper precautions you and your provider can plan ahead or even delay the onset of T1D.

Testing positive also means possible feelings of anxiety or fear about developing T1D.

Lack of official guidance from leading organizations

Screening for T1D at the autoantibody level is a relatively new process. Therefore there aren’t any official mental health guidelines by any leading organizations, which can leave people feeling lost.

Without a diagnosis, getting help for your mental health can be more difficult. Often physicians won’t make referrals for additional care without guidance from mental health organizations.

If your results are impacting your mental health, advocate for yourself by asking your provider to see a therapist.

It is normal to feel anxious or fearful about developing T1D?

It’s worth repeating here: it is normal to feel anxious or fearful about developing T1D!

You may feel worry over potential diabetes complications, how your relationship with food may change, the cost of insulin and health insurance, the stigma of diabetes and even the heavy load of managing the day-to-day with a chronic disease.

The good thing about autoantibody testing is that it can give you time to prepare. If you are uninsured, it can provide you with time to get health insurance, find a doctor and read up on different diabetes management styles. Being prepared is a good thing!

Advice for managing T1D fear

Dr. Mark Heyman, The Diabetes Psychologist and author of the book, Diabetes Sucks and You Can Handle It, has been living with T1D since 1999. His specialty is helping people with T1D live their best lives and not letting T1D get in their way.

He says, “The best thing people who have recently tested positive for diabetes autoantibodies can do is to educate themselves on what diabetes is and how it is managed. Testing positive for antibodies can give people time to get their feet on the ground and have a steady idea of what diabetes management entails.”

He continues, “People get into trouble with anxiety when our minds anticipate the worst-case scenario of any situation. Instead, make a plan for what you’ll do if you detect symptoms of T1D.

Have your own checklist if you have symptoms, this is what you’ll do, etc. This way, if and when T1D develops, you’ll be prepared and know what to do.”

Dr. Heyman suggests people reframe their thoughts from a “ticking time bomb” to the “gift of time” to prepare.

He also advises that, “People must set reasonable expectations on how the day-to-day of their lives may change, but that overall they’re still going to be the same person with the ability to do the same things they do now. Life won’t change dramatically. Surround yourself with positive role models who currently live with T1D to feel less anxious.”

Finding professional mental health help

It can be difficult to find the right mental health provider for your needs. That’s especially true when dealing with a chronic illness like diabetes.

The American Diabetes Association (ADA) teamed up with the American Psychological Association (APA) to create a directory of mental health providers specifically equipped to meet the needs of people with diabetes and those at risk for diabetes.

According to the website, these providers are:

• Currently licensed as a mental health provider
• Professional member of the ADA
• Have demonstrated competence in treating the mental health needs of people with diabetes

The tool is simple to use: enter your zip code and whether you’re looking for adult or pediatric services. The directory will then pull up diabetes-trained mental health providers near you. The directory also lets you access what types of insurance the provider accepts, their office location, phone number and more.

The importance of finding support

More than anything, know you’re not alone! You have support from the T1D community.

There are many people who are newly diagnosed with T1D and others who have tested positive for diabetes autoantibodies who know precisely the fears and anxiety that you’re feeling.

Remember that being diagnosed with T1D isn’t the end of the world; people with diabetes can lead long and fulfilling lives while accomplishing extraordinary things.

More than anything, Dr. Heyman recommends having community support. He says, “Meeting other people who are in a similar situation can help you learn to tolerate the uncomfortable emotions you may be feeling.”

Finally, he adds, “Being in community with others will serve you invaluably throughout your life.”

Join our community to meet other people who are going through these similar experiences! Read more here if you’re curious about talking to your doctor about autoantibody testing, or what to do if you’ve recently tested positive for autoantibodies. Check out our mental health resources too!

Editorial Note: This content was made possible by Provention Bio, a Sanofi Company. Editorial control rests solely with Beyond Type 1.