I recently came across a post by bodycrimes called Your Lived Experience Doesn’t Make You a Medical Expert.
I’ve had cancer, and can tell you quite a bit about my own disease and my own lived experience of being a cancer patient. I can give you some useful tips about getting through the whole ordeal, and point out resources your doctor might not be aware of. But you’d be a fool to come to me for expert advice on how to treat your own disease.
I certainly can’t imagine lecturing readers of an international magazine on the correct way to cure cancer.
It’s a response to Lionel Shriver’s recent piece in Time–Shriver disagrees with the decision to categorize obesity as a disease because she believes it will undermine the personal-responsibility-will-power paradigm that she believes in. As bodycrimes points out, Shriver’s claim to “expertise” comes mostly from her experiences with her brother (her latest novel is called Big Brother) and her assertion that weight control is a simple matter of will power is contradicted by the paltry number of people who manage to maintain significant weight loss. But I could easily see someone turning the title around as an anti-HAES/pro-dieting slogan, and in fact I was half-expecting the post to be a response to such a person.
But while lived experience doesn’t tell someone the best course of treatment for cancer, it does tell them the personal cost of a given course of treatment. If someone is trying to decide whether to go with chemo, radiation, hospice care, etc. they probably want to know what the side effects of the treatments are and how they will affect long-term quality of life as well as the chance that the treatments will work.
That’s when I realized that my choice to follow Health At Every Size fits very well with my general philosophy about medical treatment. I lean toward less intervention. I wouldn’t want to be revived from multiple strokes and do the same rehab over and over near the end of my life. If I were put on life support, I wouldn’t want to be kept for months or years in a coma. My dog recently ate some decorations and the vet said that we could do an exploratory if I wanted to, but her instinct was not to without clear signs of distress–great, me too! (If these examples seem a little weak, well, I’ve been lucky enough not to have to make too many of these types of decisions. Also, my dog seems to be okay.)
My internal definition of “heroic measures” is “medical interventions that are costly, painful, and/or reduce quality of life for the patient, and that have a small chance of success and/or would result in a relatively small increase in lifespan, which are undertaken because not doing so will almost certainly result in failure.” Wikipedia has an even stricter definition: “heroic treatment or course of therapy is one which possesses a high risk of causing further damage to a patient’s health, but is undertaken as a last resort with the understanding that any lesser treatment will surely result in failure.” Both could apply to weight loss efforts–except that the guaranteed failure in this case is not loss of life, a limb or eyesight. It is not the loss of a vital function of the body. It is the failure to turn a fat body thin, and in most cases the medical goal is to increase life expectancy. (Improving the individual’s “numbers” is also a common goal, but the purpose of that is basically to increase life expectancy, and sometimes to reduce medications as well.) Note that an individual’s lifespan may not even be close to their predicted life expectancy–there is no guarantee that the individual won’t have a long lifespan in the absence of this intervention.
The “failure” we’re talking about is a relatively small one. For people in the “class 1 obese” BMI category, it’s an increase in morbidity but no increase in mortality. For “overweight” people, there’s a decrease in mortality. Even the fattest people in the most pessimistic studies only experience a decrease in lifespan of about ten years. (Note that in that 2nd link, the reference category is not “normal weight” (BMI 18.5-24.9) but BMI 21-24.9, which the authors chose because the lower part of the “normal” range has higher mortality.) The cost of a weight loss attempt is paid up-front, but the benefit, if there is one, only comes at the end of life, when accidents or life-threatening diseases unrelated to BMI have had their chance to kill and may have made the increase in predicted lifespan irrelevant. And all of this is assuming that formerly-fat people have the same risks as thin people. Even if you think that fat is the direct cause of all the mortality and morbidity, this seems like too much to assume–after all, even smokers who quit still have an increased risk of lung cancer compared to those who’ve never smoked, and there aren’t as many confounding factors in the case of smokers as there are in the case of BMI.
What about the “high risk of further damage” part of the definition? Any weight loss attempt has a high likelihood of turning into a regain, and weight cycling has its own health risks–not to mention the emotional toll and the work that goes into the initial weight loss. The loss of muscle resulting from weight cycling could also reduce quality of life. Also, focusing more on calories than on healthy eating, and the proverbial dive into a vat of Twinkies that often accompanies the weight regain (due to the fact that the body basically thinks it’s starving and wants as much calorie-dense food as possible) are not exactly healthy.
The big difference between most “heroic measures” and weight loss attempts is not the chance of success or the amount of harm done to the patient. It is the fact that the benefit is so far in the future–often a half-century or more–if there’s a benefit at all.