BlogCoping with Illness

Elephant Stampede: Health Stigma Causes Damage

This post is the second in a 3-part series on Health Stigma and Healthy Privilege.  You can read the first post here.

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In the previous post, I talked about the possible definitions of health stigma and healthy privilege.  As far as I am concerned, those definitions are simply a starting point.  I want them to create discussion, get debated, get amended.  My goal with offering those definitions was to offer a possible common language to help patients, providers, and caregivers better have important discussions.  In this post, I want to talk a bit more about the damage that health stigma may cause.  It is well documented that stigma has negative effects on those who are stigmatized (for more on that, you can read here or here, just to get started).

Health stigma is not a new thing–just look at the biblical references to leprosy.  All areas of stigma, prejudice, and privilege have some important similarities.  However, I believe that health stigma has several unique challenges.  Let’s explore those now.

  1. Many challenging, painful, and downright debilitating health conditions are completely invisible.  That can mean that healthy people in your life have a difficult time understanding the extent to which your illness affects your daily life.  Patients talk about being described as “lazy,” “unreliable,” “resistant,” or my least favorite, “non-compliant.”  People coping with the invisible illnesses are often judged on the same scale and standards as those who are healthy.
  2. Health status can change, sometimes rapidly.   This important point was brought up in the comments on last week’s post by commenter The Afternoon Napper, who said: “Please consider the element of unpredictability—some days are better than others for no clearly explicable reason; some activities will be perfectly acceptable one day and exhausting the next. We live in a constant state of adjustment, major and minor. The “healthy” fail to appreciate how exhausting this is in and of itself. We invisibly ill push ourselves to meet expectations, and yet it seems that by doing so we set ourselves up for failure—when our pushing inevitably leads to crashing, we are deemed wanting.”  I believe that the reality that we can transition from healthy to coping with illness without notice (or control) is something that many people are uncomfortable thinking about, which leads to our next point.
  3. Health is often seen as a result of choices, willpower and behavior–something that people can “choose to achieve.”  There are many case studies that disprove this myth, many people who live active lives and make healthy lifestyle decisions but still face cancer, heart disease, stroke, depression, anxiety, multiple sclerosis (you get the picture).  However, it is a strongly held belief by many people that those facing illness, “brought it on themselves.”  Commenters Kate and Carolyn both had something to say about that last week.  Kate said, “Regardless of the fact that type 2 diabetes is not caused by obesity or eating too much sugar, that is what the public believes.  Therefore, it is thought that “all we have to do” is stop eating sugar and lose some weight!  Even many doctors look down upon those with type 2 diabetes when their glucose control isn’t the best and the patient insists that they aren’t “cheating”.  They are labeled as non-compliant.  That label, along with the stigma we face in the media, causes untold stress and anxiety.  That stress and anxiety can often lead to depression and binge eating.  A vicious circle.” Carolyn added, “Heart disease is another chronic condition that appears invisible. Not only invisible, but it enjoys the double whammy of being widely considered to be self-inflicted from all those years of bad living.  And when you have this self-inflicted, invisible condition accompanied in up to 65% of cases by significant symptoms of depression  – and you now have the double-whammy stigma of self-infliction plus mental health issues.  Two stigmas for the price of one!”  As a psychologist, I can tell you that many of my patients have been told that they can rid themselves of depression or anxiety just by “thinking positively.”  That position manages to simultaneously discount someone’s suffering and blame them for their mental health strategies.

I could keep writing all night long–but this is already getting to be a long post.  In the last part of the series, I’ll begin discussing how to push back against health stigma and call out healthy privilege.  Until then, I would love to hear your thoughts on the damage that health stigma may cause.

 

 

 

 

Image Credit: “Stampede!” photo by MSVG via Flickr under Creative Commons License

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8 comments

  1. Being blamed for one’s illness leads to depression which leads to poorer self-care which leads to more debilitating illness. That vicious cycle that others have mentioned sure does rear its ugly head, and it mostly comes from other around us thinking that we must have caused our own health problems.

    1. Rachelle,

      The vicious cycle is a tremendous challenge. And I think that many of us engage in some self-blame, which also feeds the cycle, and is a reflection of the cultural assumption that health is “earned.” Thanks for your thoughts.

      Warmly,
      Ann

  2. Thank you for this. I’ve been battling chronic health challenges for about 20 years before getting a diagnosis. Now that we have an idea what’s wrong and how to “fix” it, I keep expecting to be “better”. All the time. ALL THE TIME. But that isn’t going to happen.

    Part of it is that I’ve lost my own sense of what is reasonable and expected levels of functioning. Part of it is that I’ve spent so long accommodating for my problems by working extraordinary hours to make up for what I can’t do, kind of like what @AfternoonNapper describes in #2, and am overdoing it, but without a sense of what I can realistically expect to accomplish.

    Regarding non-compliance, you might appreciate the following essay. I think it’s rather brilliant.

    Atkins, Charles. “Patients Usually Have Reasons for Being Noncompliant.” [Opinion columns: Commentary] American Medical News (April 9, 2001) 44, no. 14. http://www.ama-assn.org/amednews/2001/04/09/edca0409.htm.

  3. Thanks Dr. Ann for quoting my comments to your #1 of 3 series on stigma and healthy privilege. My post inspired by that first piece has garnered lively commentary on my blog Heart Sisters: “Healthy Privilege: When You Just Can’t Imagine Being Sick” http://myheartsisters.org/2013/04/13/healthy-privilege-when-you-just-cant-imagine-being-sick/ Thank you so much for introducing me to this important concept.
    regards
    C.

  4. This new article on white privilege (reflection on the Boston Marathon bombing) may help inform this discussion; after a quick read I thought to pass on the link just in case something of value to this conversation may be gleaned from it: http://www.mediaed.org/blog/?p=2216

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  6. Hi Ann,

    Great series of posts and I wrote one a couple of years ago that this series reminded me of http://strangelydiabetic.com/2012/07/06/a-thin-line/

    I think this health privilege concept goes much deeper than just the privileged not understanding how our worlds of invisible illness work.

    This is going to sound like I’m blaming the patient, but there are times when we do feed those stereotypes, I believe. In that article, I talked about the thin line that advocates must walk between between being motivational and showing how debilitating invisible illnesses can be.

    We see this in the diabetic world all the time as there are world-class triathletes, NFL football players, movie stars, you name it with diabetes. These are the people that end up at events, such as testifying to congress, about how terribly diabetes affects them. And these are people who are at the summit of their chose fields.

    Children also testify at these events, children who need inspiration to see that it’s not all bad, you can still achieve all you can.

    There’s the rub, as these same children, and adults, can go to bed at night and simply not wake up the next morning.

    I talk about diabetes and depression on my blog quite a bit, and every once in a while I will receive an angry email, usually from a parent, usually taking me to task for putting such horribly negative stories where their children could read it.

    We don’t want pity, we need to supply inspiration and, yet, we need to communicate how devastating our conditions can be.

    1. Scott,

      I think you capture one of the dilemmas that many people feel caught by–the difference between the pity/sympathy that feels belittling and empathy that creates safe space for difficult truths.

      Thanks for sharing.

      Warmly,
      Ann

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