On Suffering

If there's anything the diabetes online community can hopefully agree on is that diabetes language matters. Use of the term "suffer" feels like the new "person with diabetes" versus "diabetic" debate. I've seen a lot of excellent discussion and well-thought out opinions on Twitter lately regarding whether "suffer" has any place when discussing diabetes. I have lots of thoughts on this subject.

First, where did this debate even stem from? The media, on many instances, has used the term to describe the state of people with diabetes. There's really no distinction here between types of diabetes or whether an article is focused on one person with diabetes versus the population as a whole. Kids are as much "sufferers" as adults are. Even pets are not spared from the label. If I search "suffer" and "diabetes" on Google News, quite a few results are returned.

To suffer means to "experience or be subjected to (something bad or unpleasant)". A more dated meaning is to "tolerate". Is this not an appropriate to term to use when discussing diabetes? The answer to that question depends.

I do think it's dangerous to overgeneralize the experience of living with diabetes and using "suffer" with reckless abandon does overgeneralize. The diabetes population is as diverse as the world is. We should not be using blanket descriptive terms to describe a population where some people do not feel like sufferers.

But, we also can't cast aside the fact that people do suffer from diabetes. It may not be you, it may not be me but 100% people suffer from this disease. I understand the inclination to use positive language to frame diabetes experiences and empower people. But, using positive language does little for those who are suffering by the standard definition. Forcing positive language with discussing diabetes may impair mental health and euphemizing diabetes experiences is perhaps the most dangerous gamble of them all. To not recognize that is to ignore all the people with diabetes who live outside a world of privilege.

I am very privileged now and do not consider myself to be suffering from managing my bloodsugars on a day to day basis. I do not think diabetes currently hinders my life. But, I suffer 24/7 from survivor's guilt caused by diabetes slowly killing my mom. That's the kind of emotional torture that never goes away and can, in no way, be made better by empowerment. To cast aside "suffer" entirely feels like casting away the experiences of my family when I was growing up and the experiences of other families who have been destroyed by this disease. My mom suffered from depression, blindness and kidney failure. Actually, truly suffered. We suffered and many others still do.

When euphemizing diabetes, it's sending a message to the general population and the diabetes community itself that diabetes is not difficult. While diabetes is treatable and we can live long, fulfilling lives, this is only possible when someone actually has access to all the tools and resources they need to manage the disease. The community should know by now that so many people with diabetes worldwide do not have access to basic healthcare, as in, insulin and test strips. The general population needs to know and care about these struggles.

It's also important to recognize the nuances, intentions and the actual effect "suffer" or any other language has. One nuance is that "suffer" by definition also means to "tolerate", even if that meaning can be out dated. I would think many agree that managing diabetes is tolerance at best. In regards to intentions, in my opinion, the media is using this sort of language to compel readers to act, to keep reading or to empathize. I do not believe it's the media's intention to overgeneralize diabetes experiences and expecting them to pick up on all the nuances of diabetes community language is farfetched hope. It's especially impossible when the diabetes community itself cannot agree 100% on what language needs to be used and when. Finally, I think the actual effect of using "suffer" is difficult to determine. Even if the word itself isn't causing overall harm to the community, overgeneralizing does.

To wrap this up, here are a few strong opinions I have. I hope others agree.

  • The media does not need the word "suffer" to describe the difficult, unrelenting experiences of people with diabetes or to describe simply living with diabetes on a day to day basis. There are better ways to convey all of this.
  • People with diabetes should recognize that we don't all share the same experiences. To say people with diabetes don't suffer at all is a position of extraordinary privilege.
  • Healthcare professionals especially should not overgeneralize diabetes experiences and think about how their language affects their patients.
  • There needs to be more awareness on how defaulting to positive language 1. affects the mental health and 2. unintentionally downplays the experiences of those going through difficult times.
  • People with diabetes should give leeway to each other when it comes to language. Given the diversity, there will never be a consensus on any language but respecting each other is important.

And, if others don't agree with me on the above, I still think we can all agree that diabetes language matters.