BlogCoping with Illness

Hi There Mr. Elephant–Let’s Talk about Health Stigma & Privilege

Part 1 of a 3-part series on health stigma and healthy privilege.

This post has been kicking around in my head for nearly a month now, the product of conversations with clients, chats with friends, and a professional life in the mental health field.  When we are talking about the intersection of physical and mental health, we need to include a discussion about health stigma and healthy privilege.  I realized as I started writing that I have a lot to say about this topic, so what started as a post will actually be a series.  2849326490_8f6909c477_n

This post will be to establish some basic definitions, so that we are on the same page.  Let’s start with a definition of stigma:

stig·ma

noun \ˈstig-mə\: a: archaic: a scar left by a hot iron :brand; b: a mark of shame or discredit :stain; c: an identifying mark or characteristic; specifically: a specific diagnostic sign of a disease –Merriam-Webster Dictionary

Now let me share my own definition:

health stigma

The feelings of shame, isolation, self-blame and invisibility that many people facing physical or mental illness feel when others make assumptions or judgments about their ability, willpower, character, motivation, or work ethic (to name a few)–Ann Becker-Schutte’s personal & professional experiences

You may have noticed that I used language that includes physical and mental health under one umbrella.  I did that on purpose, because many physical health conditions and all mental health conditions fall into the category of “invisible illness.”  That means someone who is casually looking at you might not be able to see the level of pain you experience.  And they probably don’t understand the effort that goes into a “normal” day.  They don’t see or understand because they have some degree of what I am calling “healthy privilege.”

This definition is an adaptation from Kendall Clark’s definition of white privilege:

healthy privilege

1. a. A right, advantage, or immunity granted to or enjoyed by healthy persons beyond the common advantage of all others; an exemption in many particular cases from certain burdens or liabilities. b. A special advantage or benefit of healthy persons; explained by reference to divine dispensations, natural advantages, gifts of fortune, genetic endowments, social relations, etc.

2. A privileged position; the possession of an advantage healthy persons enjoy over persons with illness.

3. a. The special right or immunity attaching to healthy persons as a social relation; prerogative.

In addition to the formal definition, I would add this:

Healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort.  Healthy privilege allows healthy people to assume that their experience is “normal,” and to be unaware that coping strategies that work for them will not work for someone dealing with illness.

Here is an example of what I am talking about when I talk about healthy privilege.  I have a good friend who is dealing with fatigue after chemotherapy.  Some well-meaning healthy friends have told her that the response to fatigue is just to “get more sleep.”  This response ignores the fact that chemotherapy puts the entire body under strain, and that strain may not be remedied with a few more hours of rest.

In the next post, I will talk a bit more about the impact of stigma, and how it can derail the effort to improve health.  For now, I would love to hear more from you.  The idea of healthy privilege is one that I am just starting to play around with.  How do you feel about these definitions?  What would you add or subtract?  What experiences have you had with health stigma or healthy privilege?

 

Image Credit: “The Elephant in the Room” photo by andresmh via Flickr under Creative Commons License

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37 comments

  1. Ann, I might consider appending stigma as follows: …when oneself or others make assumptions or judgments…

    I’m confused by “and to be unaware that coping strategies that work for them will work for someone dealing with illness.” I would add a “not”: …will not work for someone…

    I’ll be interested in where you go with this. For instance, if one enjoys healthy privilege does that somehow equate to diminished privilege for another, as if zero sum? Is stigma somehow the inverse or opposite of privilege?

    1. Bart,

      Thanks for catching my typo–that is what happens when I cram writing in between sessions.

      Warmly,
      Ann

  2. Great beginning. I was also thinking about privilege in relation to wealth and income too. The stigma of poverty impacts healthy living and often causes the kind of conditions you are referring to.

    1. Regina,

      I think that all levels of privilege (race, wealth, sexual orientation, gender, health) are tied together. Conditions that affect access, whether it is to health care or to good education or good jobs, all share similar characteristics. This is definitely a beginning–trying to understand how this issue connects to other areas of privilege. Thanks for your thoughts!

      Warmly,
      Ann

  3. Nice post. I just got back home from a flight from Colorado. There was a group of disabled veteran athletes on the flight. They were boarded first while we waited, which was fine, no one was complaining abt the wait. But I thought about how those people must feel, as we boarded after them. I thought about how it must feel to watch everyone walk by, when they could not do so. It was a sobering moment, and also in that moment, I knew there wasn’t much I could do to change things. Just acceptance and wonder about the chances of the world, the chances of life.

    1. Kathy,

      I think that in those moments, we can choose to look others in the eye, to not look away from the challenge that they face. When we make eye contact, we are also recognizing the person and not the disability.

      Warmly,
      Ann

  4. […] Mid-Week Balance is shaping up nicely for Wednesday, and on Friday I’ll be back to the Health Stigma and Healthy Privilege series. Kathy Morelli is a colleague of mine.  Her specialty focus in perinatal and postpartum […]

  5. I love this post and anxiously await the other parts you are planning. As someone who deals with type 2 diabetes I can completely relate to this subject. Type 2 diabetes carries with it a huge stigma that is fueled by the media and misunderstanding/misinformation in the general public. 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. Thank you for touching on this very real subject. I have shared this article on my Facebook page in the hopes that others will read it and, possibly, understand a bit more about “invisible illnesses”.

    1. Kate,

      I am so glad that you found the post helpful! Yes, the connection between stigma and the deepening of both mental and physical illness is a serious challenge. In fact, that is what the next post is about. I hope you don’t mind if I quote part of your comment in the next part of the series. Thank you so much for your thoughtful response.

      Warmly,
      Ann

      1. I don’t mind at all! Quote away.

  6. Absolutely, vehemently YES.

    “Healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort. Healthy privilege allows healthy people to assume that their experience is ‘normal,’ and to be unaware that coping strategies that work for them will not work for someone dealing with illness.”

    You’ve hit the nail on the head.

    As you continue with this series, 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. All our problems can be solved by diet, exercise and rest, the healthy say. Yes, diet, exercise and rest certainly contribute to overall health; however, they are not a solution to chronic and progressive problems.

    1. Sarah,

      I did mention the unpredictability–with credit to you, of course! Thanks for that powerful and important reminder.

      Warmly,
      Ann

    2. Sarah, very well said! So true. To continue the unpredictability thread, it is such terrible trap. When you feel good, you see no reason why you shouldn’t take on commitments and extra responsibility. Then when the time comes to deliver, you may feel lousy and fail. The flip side is that sometimes you may feel good and (having learned your lesson) decline to take something on because of the unpredictability factor. This is especially baffling for the privileged who may see you doing fine (telling jokes, having fun) and wonder why you’re being lazy/disengaged. Arghh!!

      Dr. Ann, thank you for putting words to this phenomenon that so many of us have dealt with.

      1. Brett,

        It is a real privilege to be a part of this conversation. Thanks for sharing your experiences!

        Warmly,
        Ann

  7. […] cope with difficult anxiety.  I appreciated her post this week because it dovetails nicely with my Health Stigma and Healthy Privilege series.  She explores how a common response to anxiety feels truly unhelpful, and invites readers […]

  8. Ann,

    I read your post a few days ago, and it has really been on my mind! I agree with other commenters – you’ve hit the nail on the head with defining health stigma and privilege. I recognize that I have my own biases against people with chronic illnesses, and even though I work very consciously against these biases, they still rear their ugly heads again and again!

    We have to name the problem to start fixing it. Thank you for starting this conversation.

    1. Rachelle,

      All of us carry bias within us–that is why having conversations about how to move past the bias and into compassionate connection is so very important. I’m glad that the conversation is catching on!

      Warmly,
      Ann

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

  10. Wonderful post. Inspired me to pull out a worn copy of White Privilege: Unpacking the Invisible Knapsack authored by Peggy McIntosh. This seminal piece is 25 years old this year. Great discussion and conributions to the phenomenon of privilege.

    1. Patricia,

      Thanks for the reminder that the original white privilege origination credit goes to Peggy McIntosh. Her work was a profound influence when I was in graduate training. It is so powerful.

      Warmly,
      Ann

  11. […] already detest thinking about death. We don’t even like thinking about sick people most of the time. Instead, we eat our superfoods and take our vitamins and run our marathons in the […]

  12. […] those of you following the Health Stigma & Privilege series, part three will be coming next Friday. I appreciate all of the interest and comments that […]

  13. […] Privilege series.  If you are new to the series, you may want to read the initial posts defining health stigma and healthy privilege and exploring how health stigma creates […]

  14. […] She explores the ways that stigma can further increase suffering.  If you read my series on health stigma and healthy privilege, you know this is an important topic for […]

  15. I love this post, and I found out about the term “healthy privilege” as you use it through Carolyn Thomas, who pointed out that a comment to my most recent post was about a phenomenon called “healthy privilege.” And then I thought about it, and I realized my post was about this term, which I had no idea there was a name for.

    I’d like to write a post on “healthy privilege” and quote you if that’s OK. I appreciate your expertise. Here’s a link to that post: http://bethgainer.com/illness-and-the-workplace-2/

    1. Beth,

      Wow–your post was amazing, and so hard to read. I am sorry that you had that experience, and so grateful that you are sharing it so that others feel less alone. The beginning of change is speaking out. Feel free to use the term healthy privilege–the more people who use it, the better chance we have of changing it.

      Warmly,
      Ann

  16. […] most people, those who have ‘health-privilege’ (HT Dr Ann Becker-Shutte), you know the occasional broken arm or case of the flu, an HMO-type […]

  17. […] have written a bit about healthy privilege and the stigma of illness, so I won’t repeat that here.  There is also a great deal of powerful writing about the more […]

  18. […] of others before me, such as Peggy McIntosh and Kendall Clark. You are welcome to go back to the original posts and read them, but I’ll share the definitions again for […]

  19. […] have written a bit about healthy privilege and the stigma of illness, so I won’t repeat that here. There is also a great deal of powerful writing about the more […]

  20. […] to say that my most popular posts since I began writing were the series I put together about what health stigma and healthy privilege are–and how seriously they affect us.  I still stand by the ideas I shared in that series. […]

  21. […] issues do not need to have their struggle questioned or discounted.  That kind of behavior is healthy privilege in […]

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