Chronically Ill People Are Not Disposable and Semantics Matter

I keep seeing this thing in medical discourse about risks, specifically risks of death. It’s phrased something like this: “most of the people who will die from *insert disease or pathogen in question* have underlying health conditions.” This is said in such a way as to reassure people that they don’t need to be that worried about it. Now on the surface this is true, but the problem is that this phrase or similar phrases are used to comfort healthy people at the expense of chronically ill people. As a person with underlying health conditions what this says to me is that my life is not valued. It says that I am disposable, that my death doesn’t count.

I recently saw this in reference to Salmonella infections. I was reading a book by a doctor (who I generally respect greatly) and he was making a case for why we shouldn’t be overly worried about raw eggs. The paragraph ended by talking about the percentage of people who might become seriously ill or die from Salmonella infections and how most of them have underlying health conditions. End of paragraph. You see what he did there? He got to the people with underlying conditions, implied we matter less, and then moved on with the chapter.

Now technically speaking, what he said is true. But there are much better ways to say it that aren’t so harmful to people in the chronic illness community. If he had said “people with underlying health conditions are at a greater risk” that would have emphasized our risk rather than emphasizing our minority. Growing up I was taught that things you say can either be true, kind, or helpful and they should really be at least two of those things. The way this doctor said this is true but it is not kind nor is it helpful.

Another side to this that I think is noteworthy is that the CDC estimates that 6 in 10 adult Americans has an underlying health condition. So this comforting phrase for healthy people isn’t even covering the majority of the population. I’m guessing that a lot of people with underlying health conditions read these things and think of themselves as the exception, a mistake that is easy to make if the underlying conditions are not specified. As a person with asthma, I know that I am at a higher risk of complications if I get the flu. But would a person with say, diabetes, know that they are also at a much higher risk of complications from the flu? It may not even occur to them because their condition acts on a different part of the body than the flu does.

Unsurprisingly, this has come up a lot with COVID-19 lately. We are beginning to see which underlying health conditions put people at a significantly greater risk but early on we just didn’t know. So the advice was that anyone with an underlying condition should be extra careful. That was turned around by some folks to mean that people without an underlying health condition do not need to be much concerned about the virus. Those are false equivalents, healthy people still need to be concerned about this, but even if it were true it would only apply to 40% of the population. Then we started hearing people calling for opening up the economy because only a “small portion” of the population is at a greater risk of dying from COVID-19. Since when is 60% a small portion of the population?

I think what happened is that the public was told that people with underlying conditions were at a higher risk of dying from COVID-19. Meanwhile the public was also told that the death rate was around 1% (a number that is still very much up in the air). Then some people made the logic jump that only 1% of the population has underlying conditions. That’s not what those numbers mean when taken together but I can see how people could have confused that.

I have to keep reminding the people I interact with that chronically ill people can hear you when you say we don’t matter. We can hear you when you say that only those with preexisting conditions will die from this, as if that makes it okay. That would be like saying that only people with blonde hair will die from a disease so everyone else can relax. That would be absurd. But for some reason this happens all the time to people with preexisting conditions.

Perhaps this is because there is often an implicit idea that people who are sick are sick because of some failure or fault of their own. This is a common theme that I’ve seen since becoming chronically ill. I think that healthy people need to believe that if they do everything just right they will stay healthy. Sadly that’s not how it works. Chronic illness is most often due to no fault of the person. My chronic illnesses, for example, are genetic in nature. I didn’t do anything wrong.

One reason for this false perspective is that from the public health sector we mostly hear about conditions that we can affect by changing our actions. For instance we have been told that if you quit smoking then your risk of lung cancer is much lower. We’ve been told that if we eat healthy we will be at less of a risk for diabetes and heart disease. But there haven’t really been a lot of public health campaigns teaching the public about the types of conditions that have absolutely nothing to do with the person’s choices. I think this has shaped public opinion in a skewed and unjust way.

Healthy people don’t want to be reminded that they could become sick and never get better. It is justifiably terrifying to them. I don’t think healthy people should live in fear of developing a chronic illness but I do think they should be thoughtful enough to realize that people with chronic illnesses also don’t want to die. This is one of those things that I shouldn’t have to say. The next time you are commenting on the risks of illnesses please try to remember that chronically ill people can hear you. Think about your wording carefully.