The Spoon Theory

Apropos of our discussion regarding helping people "get it" here is the Spoon Theory alluded to by Wonky Warrior in her recent comment. It's from the blog But You Don't Look Sick. This is the best attempt I've seen at explaining the impact of chronic illness. Please read this.

Why good people say stupid things

Last night someone posted a comment on my recent post about the seriousness of autoimmune arthritis and the frustration we feel at those--from family members to strangers--who don't understand or support us. You can read the comment here, but the gist--as I read it--is that if we just patiently educate people, most will understand. Those of living with RA/PA/AS and related diseases know that it's not that simple. I started to reply in a comment but it was turning in to a rather lengthy post. So here is my response to all those who think it's just a matter of education:

I wish it were as simple as you describe. But if it were, the blog roll at the right would be much shorter and 11 other women would not have found so much resonance in my post. The problem goes far beyond ignorance. Explanations alone do not suffice. Some of the women who commented have been educating others about autoimmune disease for decades--to no avail. "It's just a little arthritis" is just one of the comments we hear on a regular basis. You can see ten more rude/oblivious comments that people have actually said to me at this post: Cancer and Crow's Feet: A Lesson in What Not to Say.
 
It would be one thing if we only heard these things from strangers. But sadly even people who care about us do not often take the time to really learn what we are going through. For many of us, the disease is invisible. So unless you live with us, you will generally see our best "face"--the face we put on when we need to go out in the world. You won't see us lying awake at night in pain, struggling to do simple tasks, running out of steam part way through a very long day. So even friends and extended family don't see the real face of autoimmune arthritis. Then, when we say "no" to something, they think we're being difficult or lazy or antisocial or flaky. It's fascinating to me that people who have known me for years find it easier to assume there has been a change in my character than a change in my physical ability.
 
With strangers and acquaintances, or people who meet us for the first time after our diagnosis, it's worse. They have no "old Kris" to guide their interpretations of my behavior so it's much easier to jump to character flaws instead of learning about the disease.
 
I've been wondering why this is so hard. Why can't people grasp the medical facts of our illnesses and translate that into compassion? I think the problem has something to do with the human reluctance to engage suffering. To really understand our situations--why we can't travel on the same schedule we used to or why we can't make that 8 am meeting--people would have to understand and acknowledge our suffering. Most people don't want to do that. To authentically engage someone else's suffering when there's nothing you can do about it takes a certain emotional and spiritual fortitude that not everyone has developed.
 

I minister in a neighborhood saturated in suffering. For some folks who come to serve with us, it's too much. They are fine if they can write a check to support our free community dinners, or if they can wash dishes in the kitchen. But if you ask them to sit down with someone very unlike them and really hear their story (which will contain a dose of suffering that "middle-class" folks can't understand or even imagine), they look like deer in headlights. Some become frustrated because try as they might they simply can't understand the lives of those living in poverty. They can't fix it. And they can't even fathom it, so they blame the victim or shrug their shoulders and walk away. It's a relatively rare few who can offer love and validation to people whose lives they can't understand. But if you do that long enough and lovingly enough, you do begin to understand--at least a little. Unfortunately, few are cut out for that kind of persistence in the face of suffering.

 

I think something similar is at work in most people's responses to those with chronic illness. When people see suffering, they want to fix it. So they offer up ridiculous advice and cures. Or, realizing they can't fix it, they find a way to disregard it. Sometimes they resort to character assassination. The "get a job" response to someone living in poverty and addiction has a cousin in the "pull yourself together" response that many of us encounter on a regular basis--even from those who love us. Other times they attempt to diminish and deny, as in: "it's just a little arthritis." Sometimes these inane responses may even be a misguided attempt to make sense of what we tell them. The person who says "Oh, I have rheumatism in my left knee" may intend to show understanding. Of course, they don't know what they don't know. And their comment becomes a punch in the gut that denies our experience. These are just some of the reasons good people say stupid things.

 
If the answer were education--and patience on the part of those who suffer--this world would be a different place. There would be a safe and warm bed for every homeless woman in our city, little children in West Central Spokane wouldn't turn up at our church's coffee hour in their underwear because they are hungry, and people facing the fight of their lives against disability and early death would not have to bear the judgments and disregard of those who don't get it.
 
This is not to say we give up. We must keep speaking up and speaking out. But no matter how clearly we communicate and educate, people will misunderstand and disregard us. And for the wounds we suffer--from our diseases and from people who don't get it--we have one another as balm. We have, in each other, other human beings who do understand what it's like to have our own bodies turn against us and turn our lives upside down.