Tuesday, June 15, 2010

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.


  1. I'm a social worker, so I can speculate at length about the cause of people's insensitivity, but I'm having an impatient week and really, most of the time when people say stupid things, I wonder how they got to be adults without learning when to keep their mouth shut. And sure, I can value the intention behind wanting to create a bridge and common ground when you compare the ache in your pinky to my RA. Seriously? SHUT! UP!

    That said, I think we simply don't learn how to say "that really sucks, I'm so sorry". There's power in that, but it does require surrendering to the inability to fix suffering.

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  3. This post brought tears--particularly the image of children showing up at church during coffee hour. You nailed down so many of the things that we struggle with in regard to the way people deal with us and our illness.

    You are a brave soul to share your blog with those that know you personally because you are enlightening and educating those around you. But at the same time, you must address the emotions and perceptions of those that read your feelings and insights that don't struggle with a life altering illness.

    In response to Pig Woman, (from a once active mother of four children, now dealing with RA), I have to say that I don't think it is necessarily "outrage" that we feel toward others, it is frustration and hurt because our disease is not taken as serious as other illnesses. The unknown nature and course of our illness causes people to brush us off in a sense and that hurts terribly. The character assassination that we experience particularly when people think we should simply "pull ourselves together" brings frustration. I appreciate your comments as a non-sufferer and your attempt to understand. I tell my family that I don't expect them to understand fully. How can they? They don't know what it's like to truly walk a day in my shoes. But if they offer compassion in the things they say and do to help me--it strengthens all of us.

  4. Pig Woman,

    I don't think of you as insensitive. If more people were willing, as you have been, to learn about RA, things would not be so hard. But frankly, I have not found people to be particularly motivated to learn about someone else's problems. (This has been true in my work at Trinity as well as with my illness.)

    As for pain playing a role in our perceptions. Maybe. RA is intensely frustrating--the pain and the treatments, and the limitations both of these bring--and it sure doesn't help when people minimize it even if they don't mean to. But I think there are a few of other things that may play a larger role because they have us swimming upstream.

    First, RA is often invisible. People can't see the pain, the damage happening to blood vessels and internal organs as well as joints. People sometimes don't believe what they can't see, especially something that creates as much unpredictability as RA can.

    The word "arthritis" is a problem. RA and related disorders are system-wide autoimmune hurricanes, but people hear the word "arthritis" and assume they know what you have. They then may associate your situation with everyone they've ever known who's had arthritis of any kind--this one probably accounts for the "you're too young to have arthritis" comment. Compare this to the word "cancer." Now that conjures a whole different image--one that people take seriously even if they get it wrong. Or imagine a disorder with unfamiliar language. Then at least people wouldn't assume they know about it.

    RA often affects younger, otherwise healthy people. Perhaps it's harder to engage suffering in younger people, harder to know what to say, maybe even harder to accept it.

    RA also forces us into some fairly drastic behavioral changes. Some of it is the pain, but there's also a crushing fatigue caused by the cytokines--inflammatory chemicals that are throughout the body in RA. People are skeptical that RA can cause so many problems and upend one's life so completely. It was the most affirming thing ever to see my rheumatologist nodding as I rattled off symptoms. Most people aren't interested in those details. They are more likely to perceive the changes in my life as a choice or a failing than a physical limitation.

    Finally, all those Simponi (RA drug) commercials aren't helping--segue to woman running on the beach with her kids. If only I felt so good! Some people benefit dramatically from the drugs. Others try drug after drug with no or inadequate effects.

    What I can assure you is that my experience and the ones you saw reflected in the comments are not unique. I wish they were.



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  6. Pig Woman,

    I live with a different chronic illness. Ehlers-Danlos syndrome - it's a rare one. In my day to day life, among other things, it causes chronic pain and chronic fatigue.

    I moved across the country to go to law school. Days before I moved, I developed a secondary condition, fibromyalgia.

    I tried to educate my classmates. I tried to explain what I could and couldn't do. I tried to participate in class, to talk to people, to have lunch with people, to be part of the class.

    They started ignoring me. Literally. I'd try to participate in a conversation and have no one respond to anything I said.

    I found out later from one of the few people in my class who had befriended me that my classmates viewed me as an excuse. Not a person, an excuse. Because I told them sorry, I can't do this, I'm in too much pain. Sorry, I can't do that, the fatigue is too severe today.

    Unfortunately, most people do not want to be educated, no matter how patient you are about it.


  7. Hi
    I have only just started Blogging and came across your blog. I have severe systemic rheumatoid disease (I have stopped using the "arthritis" word as it stops people telling me about great aunt mo who had that in her foot once, but did like her gin...;-))I do have a good moan and cry every time I loose another part of my life to the Rheumatoid monster, but then I move on. You have to otherwise the rheumatoid has won and you have lost. I used to belong to butyoudontlooksick on line as I loved the spoon theory which is dead handy to print off for people. Sadly, I do now look sick... Never mind. There really are more interesting things about me than RA- how I get through life in hospital being one! I have worked, have 2 adopted and 1 birth child, divorced a nasty man and out of the blue married a lovely man and WOW there is so much life I want to do! I am starting to wonder how to get all this done and live life with a body that is in rebellion mode, hmmmmm, there by the grace of God- might need a top up of that then!

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  9. @ Wonky - Thanks for your delightful post. I want to be like you when I grow up. ;) I'm finding these months after the diagnosis (all 8 of them) to be upending. But slowly, I'm getting in the groove of living with the new reality. Thanks for reading!

  10. Kali, thanks for your comment. I'm following your blog and I celebrate your courage for keepin' on keepin' on in a hostile environment. You are a beacon. Blessings, Kris.