When the Type 1 Diabetes Diagnosis Arrives After 40

Editor’s Note: Are you an adult navigating a recent type 1 diabetes diagnosis? Our partners at JDRF created the free No Limits Adult Care Kit just for you—packed with information and tools to educate, support and inspire newly diagnosed adults with type 1 diabetes (T1D). Request yours here.

This article has been translated from its original Spanish and can be found on es.beyondtype1.org.

In so many people’s minds, type 1 diabetes—previously known as juvenile or insulin-dependent diabetes—is a disease that happens exclusively to children. When an adult has type 1 diabetes, it’s assumed that they have had it since they were children. It’s also assumed that everyone diagnosed as an adult has type 2 diabetes. So being diagnosed with type 1 diabetes as an adult means becoming an alien from another planet: most people think it is impossible.

At 43, I thought I had many things figured out and would soon be able to focus on new projects. My children were growing up and their autonomy allowed me to think about resuming some of the personal projects I had postponed: changing jobs or embarking on a new career, going back to college and getting a postgraduate degree, reading more, going out more, traveling a little more…

Instead, with two school-age children and intense work activity, my diabetes diagnosis was like an aerial bombing that came out of nowhere, with no family history of any kind and at a time in my life when I was preparing to face new challenges.

As with any other pivotal event, there is a distinctly felt before and after the diabetes diagnosis. Daily life, plans and projects went into standby mode. Everything seemed to shatter against the reality of a disease about which I knew little to nothing, while navigating the diagnosis in my country of Argentina where the latest scientific advances are not available to most.

Navigating the mental burden of my diagnosis

The only thing I managed to do at first was read. Printed and digital books, websites and online junk articles consumed a good part of my free time. It was a time when there was not much literature and a lot of pseudo-medicine being touted as treatment options (I learned to detect charlatans and frauds from miles away).

The huge challenge was incorporating diabetes into daily life and trying to let it interfere as little as possible. But the reality is that this is not possible, even though we are so often able to hide the huge effort we are making to manage our diabetes and continue to control our lives “like normal.”

Finding help is not easy. The doctor often does not know how to help us since most of their patients have type 2 diabetes, and most of their patients with type 1 diabetes While 50% of people with type 1 diabetes are diagnosed as adults, it can be difficult to find T1D resources aimed at adults, particularly outside of the U.S.have had it While roughly 50% of people with type 1 diabetes are diagnosed as adults (source: JDRF), it can be difficult to find T1D resources aimed at adults, particularly outside of the U.S.since they were children or teenagers. Many newly-diagnosed type 1 resources are aimed at the parents of children who have been diagnosed. The approach to the few talks and workshops we have access to is often childish and insubstantial.

When type 1 diabetes appears in adults, it can put us in limbo—even if we get a correct diagnosis (which is not always the case, type 1 diabetes in adults is often misdiagnosed as type 2), the medical environment does not make it easy to acquire the tools we need to be self-sufficient and achieve good management. Additionally, as adults we are expected to be emotionally and intellectually capable of dealing with the new situation, adapting fast as if it were a new job or moving to a new home.

Finding resources for newly-diagnosed adults in Argentina

After the first stage in which it would have been helpful for me to be able to talk and compare experiences with people my age who were going through similar situations, I turned to the virtual world looking for scientific information and peer support that I did not find in the real world.

When my sister and parents decided to gift me my first continuous glucose monitor (CGM) system, blogs became a reference point to help us choose one, learn how to use it, and get all we could get out of it. I found countless blogs of all kinds in English, many of which I now follow regularly and religiously.

Still, I can count with one hand the ones I found in Spanish that really had helpful, personal content and experiences or a collection of scientific, fact-based articles. Luckily, this is changing for the better. Unlike 10 years ago, there is now interesting, well-informed material that shows us that we are not as alone as we thought.

Gradually and with a lot of effort, things began to go back to a new normal—the new course of life with diabetes. Much of the time I thought I was going to gain at this stage of my life I had to dedicate to learning and training in diabetes management in a country and in an environment where there was no easy access to groups, networks, associations for adults with type 1.

Life does not stop with a diagnosis—it barely pauses to allow us to adjust. We carry on almost as if nothing had happened.

On occasion, one of my friends tells me: “You handle it so well,” and I realize that part of the daily effort is to make it so that people do not notice how hard it is to do this every day. It looks easy from the outside, and we make it look easy. And people believe us.

For resources and personal stories in Spanish about living with type 1 diabetes, visit es.beyondtype1.org.