If you're living with a chronic illness, you're in the right place.

Thursday, September 25, 2014

"Suffering From" or "Living With?"

6:37 AM Posted by Tiffany Taft , ,
Vernacular.  It's a powerful thing.  It also changes over time, evolving to fit the current generations' way of thinking and viewpoints.  This is generally a good thing.  In the chronic illness world, some words that were once commonly used to describe a person - like "handicapped" - have been replaced with words that are less stigmatizing or discriminatory.  Another example is the push to use "adherence" rather than "compliance" when discussing a patient's following of a prescribed medical treatment as the medical community has moved, albeit kind of slowly, away from the patriarchal model of the physician-patient relationship.

One term I still see pretty often, including  in the medical research literature, is "suffers from."  As in, patients who suffer from [insert disease name here].  There's no doubt that illness comes with periods of suffering.  But is that the right way to describe the entire experience?

An alternative that's emerged in more recent years is "living with."  So-and-so lives with lupus.  Patients living with rheumatoid arthritis.  When I write, whether it's a blog post or a scientific paper, I use this term.  I like it better.  And when I see "suffers from" my attention becomes fixated on those two words for a moment because it kind of bothers me.

Why does it bother me?  I think mostly because while suffering is part of life with chronic illness, it's not everything.  I feel like using the word suffer overshadows the other stuff; it sets an expectation that because you suffer, you cannot possibly do as much as a non-ill person.  And I know that's simply untrue.  All you have to do is look around the web, or at friends or family who live with a chronic illness, and see the great things they do in spite of their chronic illness.  Do they suffer?  Sure do.  But they live.

Maybe the word suffer pushes a button deep down in me that I can't put my finger on, but this is my reaction.  Buddha declared that life = suffering.  Everyone experiences it at various points in their life.  But for those who live without a chronic illness, they don't have the word regularly attached to a part of their identity.  

Words have a lot of power, and they get into our psyche when we hear them repeatedly over time.  Eventually they can become part of our core belief structure, which pretty much dictates how we see ourselves, the world, and other people.  Our beliefs drive our perceptions and behaviors.  It's like a percolator coffee pot, which when I was a kid was how my mom made coffee (yep, I'm old).  The water at the bottom of the pot is our core beliefs.  These move up through the coffee grounds in the middle, which are our attitudes, rules, and assumptions about life.  The coffee that bubble to the top are our automatic thoughts (and subsequent behaviors) that we display to the world.

If I see myself as someone who suffers, to me that has a negative connotation.  I much rather prefer to see myself who lives in spite of suffering, which is nowhere near a constant presence in my life.  And even on the days where there is suffering, most people with a chronic illness still get on with their day and push through because of their resilience.

I'd love to hear your thoughts on this and whether you prefer the term "lives" or "suffers" and why.

Dr. T.