Prevention: the action of stopping something from happening or arising. ~Google Definition.
Words matter. I find that certain words really make me cringe. One of those words is the word prevention. Why? Because prevention means that we know what causes something. It means that we have a way to actually prevent it from happening.
Another concept that I ran across this week was that of healthy privilege. See ‘Healthy Privilege: When you just can’t imagine being sick‘. The key to this idea is that if you have never been really sick and never seen/cared-for a loved one that is really sick, you cannot really appreciate what it means. There are a few great posts that try to explain some of the impacts, like the spoon theory (love this), but really, until I had cancer I could not appreciate what it meant to have cancer. I very much had healthy-privilege.
So what does healthy-privilege have to do with prevention. I find that prevention is a word that healthy people use to help them feel better. Once you’ve had a serious disease, then prevention doesn’t make you feel any better. In some cases, prevention makes you feel like you did something wrong. If it isn’t something that is preventable, because we don’t know what causes it, then prevention isn’t the right word. The right word is usually ‘risk-reduction’ (OK, it is a phrase not a word). My point is, we might know of some correlations that can tell us what might reduce our risk, but we do not know how to prevent it. So prevention isn’t the right word.
The word appeared in the context of things that can be done to reduce the risk of breast cancer recurrence (once you have been diagnosed). Prevention of recurrence makes no sense because we don’t know what causes breast cancer to come back. We do things that help reduce the risk of recurrence, but there is no guarantee.
People who do everything right still get breast cancer. People who do everything ‘right’ still progress to stage IV (terminal). People who do everything right still die from breast cancer. There is no known way to ‘prevent’ it. Science has taught us that there are some things that correlate to a lower chance of recurrence. Correlation is not causation. Just because those who do something are less likely, doesn’t mean that the something prevents it.
So please, please, pretty please, stop using the word prevention when you really mean reduce the risk. And especially stop using the word prevention when referring to someone who does not have healthy-privilege, that is, someone who has already gone through the cancer process or who is going through it now. We do not need to be made to feel like we did something wrong!