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5 things everyone should hear after receiving a type 1 diabetes diagnosis (at any age)

Type 1 diabetes often arrives totally unexpected. Shock, denial, fear, and sadness are usual first reactions. For most, the maelstrom of negative emotions swirling around the person and family will significantly influence what happens next. The following are the top 5 things I feel are essential to convey early into the diagnosis: if not at the very first encounter in the emergency room, hospital, or clinic. These points are based on 35 years of caring for hundreds of newly diagnosed persons with type 1 diabetes of all ages. They are tempered by my own 55 years of living with type 1 diabetes. They are not necessarily in order of importance, except for perhaps the first.

1. No one caused this. Many persons harbor feelings of guilt that something they did (or did not do) led to diabetes. Type 1 diabetes is the result of an autoimmune action taken against the insulin-producing beta cells in the pancreas. No acts of volition or omission cause this to happen. That must be made clear from the start. There is no room for guilt and shame in diabetes and it is vital to dispel this at the beginning. I aim for this to be the first thing I teach. Often there is an audible sigh of relief after this information is shared. This makes it easier to introduce the other key points.

2. A normal life is the goal. Life with type 1 diabetes has never been brighter. With ongoing support and diabetes education, all of life’s opportunities remain within the grasp of persons with diabetes. When complemented with emerging tools and technologies, the person with diabetes should expect a fulfilling life and career in whatever field of endeavor they seek. Barriers still exist in a dwindling number of professions, such as active combat military service. The future has never been brighter for the person or child with type 1 diabetes to excel in whatever life path they set upon.

3. There is no good or bad. Life is a never-ending series of grades, ratings, and report cards. Diabetes can easily get become overrun with self-judgment or the unnecessary judgment of others. No matter how well meaning, there is no morality in diabetes. This is a metabolic disorder not of a person’s choosing. It requires knowledge, experience and understanding to manage it from day to day. Diabetes care is a process, not an outcome. Since diabetes is overrun with numbers, it is a seductive trap to use words like “good” and “bad’ in association with these, either with oneself or in front of loved ones with the condition. Aim to avoid using “good” or “bad” to describe diabetes or its management. Blood sugars can be “in range”, “high” or “low” and A1C results can be “in target” or “out of target”.

4. Diabetes care is defined by one’s choices. It is said the average adult makes 35,000 discrete choices each day. Over half of these choices are habit-driven (i.e., we are not always aware of them) and the rest are consciously made. But the total number remains staggering. Our everyday lives are defined by these choices, both those we act upon and those we do not. Acts of omission weigh heavily in the world of diabetes. Just imagine the effect of not taking a scheduled dose of insulin, or not checking a blood sugar value before a critical activity. What about not eating a meal after taking a dose of rapid-acting insulin? Choices are the currency of effective blood sugar self-management.

5. Do not compare yourself to others. You are unique. We live in the post-social media world. Many of us constantly share intimate details of our everyday lives and innermost feelings online with strangers through online platforms. Whether through a post, image, or video clip, we aim for others to see us the way we wish them to, and vice-versa. The diabetes online community can be invaluable as a means of support for persons with diabetes. But it can also be viewed by some as a yardstick upon which we measure ourselves. This leads to unfair comparisons, and at times envy. It can also be a source of bullying and shaming. Everyone’s diabetes is different in thousands of ways. Avoid comparing your life (or the life of your loved one with diabetes) to others. Like the good-bad trap, comparisons typically lead to jealousy and frustration.

You may have additional points to add. But these are what I have found to stand the test of time. They are evergreen. Share.

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