No Shame in Disease Diagnosis

Shameless I’ve been thinking about the responses to the ADA’s misguided classification of obesity as a disease, and in retrospect I am really concerned that, at least in my own work on the subject, I didn’t do a good enough job making sure that I didn’t stigmatize people who are living with a disease. I’m concerned that when I say “my body size does not constitute a disease,” people who are living with actual diseases might hear “I don’t want to be like you” or “I think that being diagnosed with a disease is shameful.” Today I wanted to both apologize to anyone who may have been stigmatized by work, and attempt to clarify my concerns. (Note: There are plenty of conversations to have about disease theory in general, but for this blog I’ll discuss diseases within the context of how they are currently treated by Western Medicine.)

Let me start here. There should be absolutely no shame in having a disease. None. It does not matter what disease someone has, they should never be shamed for it. I advocate for nothing less than shame-free, blame-free, future-oriented healthcare. It does not matter why someone has a disease, it matters what happens moving forward. We can never change the past so after a diagnosis it’s all about options and choices, not blame or shame. People who are diagnosed with a disease should be given true information, all of their options, and compassionate care on their terms based on their choices. There is no shame in being diagnosed or living with a disease and I am extremely sorry that I didn’t do a good enough job saying that in my blogs on the subject. I fucked up and I’m sorry.

To clarify, my concerns with obesity being classified as a disease center primarily around the fact that the sole diagnostic tool, and the sole measure of treatment progress, for the “disease” of “obesity” is a simple ratio of weight and height. So when fat people go to the doctor for actual diseases I am concerned that they will be diagnosed with “obesity” as the primary disease and their healthcare provider will prescribe weight loss in lieu of actual health interventions that are proven to help the disease they actually have. For example, if a patient goes to the doctor for Type 2 diabetes, they doctor might consider the T2D to be a symptom of, or secondary diagnosis to, the “obesity” diagnosis and suggest that they ignore interventions that are shown to help control T2D in lieu of attempting weight loss. This is a dangerous practice that is already happening (I was once prescribed weight loss for strep throat), and I’m afraid that the ADA’s decision will lend legitimacy to the practice.)

The major problem with that is that there is not a single study where more than a tiny fraction of participants have succeeded at long term weight loss, and there are certainly no studies where more than a teeny tiny fraction of participants lost enough weight to change their BMI longterm. Often “success” in a weight loss study is defined as 5% of body weight, or any weight loss at all (which for many fat people doesn’t create a shift in BMI which, remember, is the sole diagnostic tool and the sole measure of “progress” in treatment.) Almost everyone loses weight in the short term and almost everyone regains the weight in the longterm and while they are busy not succeeding at long-term weight loss (which shouldn’t be a surprise since it’s exactly what the research tells us will happen) their actual health issues may go untreated.

The diseases correlated with being fat are not actually fat people diseases. Thin people get them too and, when they do, they are given treatments that are shown to treat the actual disease. My concern is that fat people’s medical treatment will be compromised because they will receive different care than thin people who have the same diagnosis simply because of their size, again this is a dangerous process that is already happening and that I feel will be exacerbated by the AMA’s poor choice.

I also feel that calling body size a disease risks putting a very finite pot of research money to very poor use. The AMA’s bad decision gave 30% of Americans a disease, and I am concerned that the diet and pharmaceutical companies will jump on this to say that the sheer volume of people with the “disease” justifies spending a ton of money on weight loss interventions. My concern here is that funding will be pulled from actual diseases and put toward weight loss research on the basis of the “prevalence” of this disease, which would be a crime against humanity as far as I’m concerned.

I hope that makes things a bit more clear, and I am reminded that activism requires constant vigilance to make sure that we’re not trying to solve one injustice at the expense of creating another.