Living with Type 1 Diabetes

The Diabetes Guilt Trip

I’m often surprised by the number of patients who come into my office and immediately say, “I’ve been bad,“ or ”I cheated,” referring to not having lost the weight that they had hoped to or not making all of the food choices that they had planned. Moreover, patients come in programmed to believe their doctors are going to scold them for physical issues that truly result from a faulty pancreas. Doctors, friends, and families seem so quick to point their finger at the patient, perhaps because there is no easy fix when it comes to Type 1. I am sorry that those diagnosed with Type 1 diabetes often have felt the need to blame themselves for this awful disease. There is enough guilt in the world already!

The notion that diabetes can be completely controlled with diet and lifestyle modifications is simply wrong; this is foremost a physiological condition. For decades, I have had patients eat the same food at the same time of day, and take the same insulin and do the same exercise routine, yet their glucose can fluctuate from 40 to 400 following the same routine day after day.

At the time of diagnosis, 90% or more of the beta cells that produce insulin have been destroyed by autoimmune attack. Unlike other endocrine diseases, diabetes isn’t a simple fix by giving one hormone, like we do in hypothyroidism. Patients with Type 1 diabetes gain weight with insulin, and the tighter the blood sugar control, the more weight is gained.

During the 1990s, I spent a great deal of my career studying the hormone amylin, which is co-secreted from the beta cell in equal concentrations as insulin. Among patients with Type 1, there is also an absence of amylin. Many patients who have used the amylin hormone replacement therapy pramlintide (Symlin®) have told me how they finally felt full after starting to use the drug; it was a feeling they hadn’t had since their diabetes began. Indeed, amylin works on two receptors in the brain that affect satiety. Between insulin use and this hormonal imbalance, weight gain can be tough to avoid.

Other islet hormone levels are also abnormal with Type 1 diabetes, including glucagon, somatostatin, and pancreatic polypeptide, all of which have been shown to be helpful when given to patients with diabetes. The hormone glucagon, for example, has begun to take center stage as a vital hormone produced by islets to protect the body from hypoglycemia.

Yes, it would be nice to potentially put all of these hormones together in a pump, but nothing is as good as having fully functioning beta cells within a healthy pancreas. Currently, the medicines that we have are Band-Aids. None reverse the underlying cause of the disease.

As much as physicians would like to help patients with their diabetes, we simply don’t yet have all the tools to do that. Prior to the discovery of diabetes, the only therapy was a near-starvation diet free of carbohydrates. Even with all of the new treatments that we now have, diabetes is not the fault of its owner.

It’s hard enough when you you receive a diagnosis of diabetes to stop asking, “Why me?” It’s even harder to avoid feelings of guilt when so many doctors act as if what’s happening must be the patient’s fault. Then there are the diabetes police – the friends and family who swat at hands or give the stink eye each time a piece of food that resembles something scrumptious gets close to the mouth.

After working with patients with diabetes for 30 years, I have learned there are no bad patients and there are no cheaters. Diabetes patients have been cheated out of a healthy pancreas. To stay healthy, it’s best to stop the blame…of yourself and of others.

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Claresa Levetan, M.D., is a noted endocrinologist with expertise spanning diverse areas of diabetes. She has been internationally recognized for the translation of science and technology into improved health care options for patients with diabetes. She served as an associate editor of the journals Clinical Diabetes and Diabetes Forecast.

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