I am somewhat disappointed by your review of my book Highs & Lows: A personal approach to living with diabetes. I am writing this letter to clarify my position.

I believe the book is clear about the true costs of membership to the "elite" group of people who suffer from diabetes. But by no means do I want to cheapen the emotional reality each person with diabetes must experience alone. In Canada, the economic burden of diabetes was estimated at $9 billion (US), according to Health Canada.

That affects everybody in Canada – with diabetes or without. In other words, diabetes, even though I have to live with it as part of the "club", is your problem (and will continue to be as the numbers rise).

But certainly it isn’t only people who have diabetes that suffer – it is people who care for them (health care professionals included), spouses, parents, family, and even children.

Many people underestimate the seriousness of diabetes. As a leading cause of death by disease in North America, it is the single most frequent reason for physician visits, use of hospital outpatient facilities, and hospitalization, though fewer than 5% of Canadian medical research dollars are devoted to diabetes research.

During their lifetimes, many people with diabetes may experience blindness, nerve damage, stroke, amputation, or kidney disease, even though they inject insulin to control their blood sugar levels.

Many people who have diabetes feel anger over their current circumstances. Physicians possess a role of authority – and with that authority comes a huge responsibility. The same goes for pharmaceutical companies such as Eli Lilly, who are making billions of dollars selling substances necessary for survival, such as insulin.

As for being "over-sensitive" to the term "diabetic", I was surprised you don’t take language more seriously – it’s not a simple issue – we don’t call people AIDSic or canceric do we? Labeling somebody a "criminal" or a "juvenile delinquent," especially at a young age, has profound implications on a person’s ability to function as a citizen in the future. This, I argue, is similar to the label "diabetic", which is applied by people in authority (physicians) to people (often young patients with type 1) who are diagnosed.

You felt that the book did not have anything good to say about anybody "working with diabetes in any professional capacity." As a camp counselor at two Canadian Diabetes Association (CDA) camps, and previously vice-president of the CDA youth group, I point out how important camp and support groups are, not to mention the importance of finding a team of health care professionals who will assist with diabetes treatment rather than take it over.

I don’t just criticize – I offer solutions, such as investigating treatment beyond conventional medicine, joining a support group, asking for help, and writing as ways to deal with diabetes highs and lows. I also suggest solutions involve allowing people with chronic conditions to take a central role in their care – and at least have choices, whether through treatment options (including alternative therapies), and through lifetime decisions.

As to the conflict you feel that is not articulated between a "heroic" and "semi-ordinary" existence, it is hard enough writing a book that deals with personal issues. Living with diabetes day-to-day IS heroic, but I wanted people to see what diabetes was really like, not hindered by some medical textbook definition, or shaped by misleading public perceptions shaped by media images of people with diabetes who are super athletes.

Deb Butterfield is quoted as saying "the public perception of diabetes is influenced by our personal testimonies. We have portrayed a disease that is no more than a minor inconvenience. It is little wonder that when things go wrong we are accused of noncompliance, mismanagement, and ‘cheating’ on diets … By showing the world only the happy face, and not the tragic disease beneath, we are endorsing the prevailing philosophy of tolerating, rather than curing, diabetes."

Let’s not tolerate diabetes anymore. Let’s get angry. Let’s cure it.

People in Cree land are sick, many people are very sick. It’s not only old people but I see young people, teenagers, and many little ones. People are bedridden, many with no limbs, neither arms, legs, fingers nor toes … Everyone around me is sick, why? ‘Please, please, someone tell me,’ I cry. The sickness hangs in the air like a cloud. I see an Elder approaching me. With much sadness and tears in his eyes, he says one word – ‘Diabetes.’

Diabetes is a deadly disease, and sadly it still doesn’t get the attention it deserves. Let’s hope there are more personal testimonies told about living with diabetes, and more steps made toward understanding it.