Type 1 Diabetes: The Value of Lived Experience Enhances Clinical Expertise

I have lived with Type 1 diabetes since Christmas Day 1973. Over more than five decades, I have watched diabetes care change from urine testing and two injections a day to continuous glucose monitors, automated insulin delivery, remote data platforms, and algorithms that adjust insulin every few minutes.

The technology has changed almost beyond recognition. One part of the system has changed much less: the knowledge gained by living with Type 1 diabetes is still rarely treated as expertise.

Healthcare professionals possess knowledge that people with diabetes need. They understand physiology, pharmacology, complications, laboratory results, and the evidence behind standards of care. That knowledge is essential. Lived experience does not replace it.

However, clinical knowledge and lived experience are not the same knowledge.

A clinician may understand how insulin works. A person living with Type 1 diabetes knows what it is like to decide whether to take more insulin when the first dose appears to be doing nothing, even though they know it may begin working all at once. A clinician may understand hypoglycemia. A person with diabetes knows what it is like to lie awake wondering whether a falling glucose level will stop, or whether an alarm will wake them the next time.

A clinician may know what a pump setting does. A person who has used automated insulin delivery for years develops a practical understanding of how settings, meals, activity, stress, sleep, delayed digestion, sensor errors, and human judgment interact in real life.

This is not knowledge gained during an appointment. It is accumulated through thousands of decisions made when no clinician is present.

The Missing Expertise

Most Type 1 diabetes management takes place between medical appointments. The person with diabetes or the parent of a child with diabetes must interpret the information, make the decision, live with the result, and decide what to do next. Patients and their caregivers truly manage T1d. Not clinicians.

Yet our care system usually recognizes only one category of expert.

Credentials matter, but they do not capture every form of relevant knowledge. Someone can understand the clinical principles of diabetes without knowing what it feels like to trust an algorithm with insulin delivery overnight. Someone can explain recommended glucose targets without understanding how much effort, sleep disruption, anxiety, and family negotiation may be required to reach them.

That gap becomes especially visible with advanced diabetes technology.

Installing an app, connecting a pump, or displaying glucose data does not teach someone how to manage diabetes. Technology can provide more information and automate more actions, but it cannot automatically provide judgment. Someone still has to understand what the data means, recognize patterns, decide which setting may be responsible, and determine whether a change is warranted.

That is where lived experience becomes especially valuable.

“We Can Talk Same to Same”

In feedback from people and families I have worked with as a Type 1 diabetes CoPilot, the value they described was not simply that I understood Loop or Nightscout. They repeatedly connected the usefulness of that knowledge to the fact that I also live with Type 1 diabetes.

One person wrote: “He also lives with DM1, so we can talk same to same.”

Another described the benefit as: “Knowledgeable from first-hand experience, so many extra tips and things we never thought of.”

A parent explained: “Mike related to our family on a human level. Combine that with his personal experience, amount of time looping and expertise of the system, he set us up for success.”

These responses point to something that is difficult to measure but easy to recognize. Lived experience changes the conversation.

It affects which questions are asked. It reveals the concern underneath the technical question. It helps distinguish between a problem that requires action and a glucose variation that needs time. It allows someone to say, with credibility, that the fear, frustration, exhaustion, and uncertainty are real.

It also creates trust. Not blind trust, and not trust based only on shared diagnosis, but trust that comes from knowing the other person has faced versions of the same decisions.

Lived Experience Must Also Be Developed

Living with Type 1 diabetes does not automatically make every person an expert in every aspect of diabetes. Time alone is not enough. Experience must be combined with curiosity, study, reflection, pattern recognition, and a willingness to update what we believe as evidence and technology change.

The same is true in any field. Experience becomes expertise when lessons are extracted from it and can be applied thoughtfully to new situations.

A Type 1 diabetes Peer Expert should understand the limits of the role. Lived experience does not grant the authority to diagnose, prescribe, or replace medical care. It does provide a perspective that can improve education, communication, technology adoption, and daily decision-making.

The goal should not be to choose between clinical expertise and lived expertise. The goal should be to bring both into the care of the person who must manage diabetes every day.

Comfort, Competence, and Confidence

I believe successful Type 1 diabetes management depends on three things: comfort, competence, and confidence.

Comfort means diabetes and its technology no longer feel completely foreign or constantly threatening.

Competence means understanding the tools, recognizing patterns, and knowing how to turn data into reasonable decisions.

Confidence means being able to act on that knowledge without needing someone else to approve every step.

Clinical care can contribute to all three. Technology can contribute to all three. However, lived experience often provides the bridge between being told what diabetes management should look like and learning how to make it work in an actual life.

That bridge is missing from too much of Type 1 diabetes care.

People with diabetes do not need less clinical expertise. They need a system that also recognizes the expertise developed by those who live with the disease, use the technology, make the decisions, and carry the consequences.

Type 1 diabetes knowledge is more than clinical knowledge. It is time our care system began treating it that way.