Drafting Team Diabetes
You are the Most Valuable Player!
Drafting Your Team
“The burden of living with diabetes is often grossly underestimated by even the doctors and nurses directly involved.”1
There is no better person to make such a statement about doctors and nurses than Deb Butterfield. In her book Showdown With Diabetes, she chronicles the trials and tribulations of having diabetes. She writes about undergoing agonizing complications, then requiring combined pancreas and kidney transplants. It should be noted that this is her experience—not all people with diabetes end up on this type of journey.
A person with diabetes must be allowed agency in their own treatment. Empowering those with diabetes to be active players—in fact, the directors—of their treatments should be a priority. They are the MVP. This sense of participation is vital, and in the lingo of medical practitioners, improves treatment outcomes.
Despite the blood tests and blood sugar monitoring, the occasional low blood sugar, the insulin injections and eating times, the person with diabetes is not always conscious that they have a chronic condition. This is a quality of life issue, and a question of basic human rights. Why accept the definition of disability that suggests someone is “broken” and needs to be “fixed?” Why accept the ridiculous moralistic assumptions that suggest an insulin-producing pancreas is somehow morally better than one that doesn’t produce insulin? When we fall into a moralistic argument of “good” and “bad” it may lead to blame and shame—to focus solely on disease is to deny that the person is a functioning human being within society, not merely a “diabetic,” but a writer, a fighter and a person first and foremost.
Similarly, those with diabetes should realize that they could be perpetuating this cycle by putting their least appealing foot forward by introducing themselves as a “diabetic.” I say least appealing only because of an awareness of the misunderstanding and stigma that the word brings—I would argue this is not the best way to start a discussion, unless it’s with a medical professional about treatment, and even that could be fraught with misconceptions.
Going it Alone
JoAnn LeMaistre, in the book After the Diagnosis: From Crisis to Personal Renewal for Patients with Chronic Illness, puts it this way:
“there is no more effective way to isolate yourself than to continually appear self-sufficient, denying any need for help or comfort from others.”2
To find a doctor that you trust and respect the first time around would be a considerable stoke of luck. Often a family physician is inadequate to deal with specialized diabetes issues. Sometimes they are willing to learn and listen, but in most cases, it’s better to seek out an endocrinologist who knows diabetes.
High blood sugar again
Here are some suggestions as to how a doctor-patient relationship could function better. That being said, it’s not a simple process in reality.
Patient responsibilities:
Avoid burnout by not trying to learn everything at once.
Ask questions and accept only full answers.
Manage your health by understanding how your body works and how it is affected by diabetes.
If the doctor-patient relationship isn’t working, find another doctor.
Report negligence or improper conduct.
Medical professional responsibilities:
Remove moral judgements from treatment of diabetes.
Attempt to maintain a supportive relationship.
Realize that diabetes isn’t only about medical care, but about nutrition, exercise, emotions and a host of other complexities.
Treat patients as people first, not “diabetics.”
Answer questions, but be patient while a person is trying to cope with information overload, especially at the time of diagnosis.
Don’t expect a person with diabetes to change everything in their lifestyle at once.
The most important member of the team (the MVP) is the person with diabetes, because they make most of the treatment decisions day to day and run the diabetes show.
All the other members of the team make recommendations based on their experience and can help if guidance is necessary, but ultimately treatment is up to the person who has diabetes, and following treatment recommendations is a choice. Seeking help and researching when you need it is part of the process.
Taking insulin, however, is not a choice for treating T1D—it is a biological necessity.
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Butterfield, Deb (1999) Showdown With Diabetes, W.W. Norton, Foreward, xi
LeMaistre, JoAnn (1995) After The Diagnosis: From Crisis to Personal Renewal for Patients with Chronic Illness, Ulysses Press