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The Mouse takes on the Elephant: Coping with Health Stigma

Mouse takes on Elephant--Coping with Health Stigma

This post is the final post (for now) in my Health Stigma & 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 harm.

Mouse takes on Elephant--Coping with Health Stigma

In the first two posts I have shared an initial definition of health stigma and healthy privilege.  I’ve talked a bit about the damage that health stigma can cause.  Today, I want to talk about how to challenge and cope with health stigma and healthy privilege.  This post has been the toughest post to write.  As I wrestled with the ideas for the post, I realized that what I was running into was a dilemma of competing truths.  It is true that, as a psychologist, I am always looking for the choices that we have to cope in healthy ways, to find our points of control, to be active in supporting health.  It is also true that health stigma and healthy privilege are big, systemic problems, which feel hard to change or challenge.

Initially, I felt pretty stumped.  But one of the things I tell my clients is that we can only deal with what is in front of us.  And so I took that logic and applied it to the issue of challenging healthy privilege.  What I have are a few “mouse-sized” ideas for dealing with an elephant-sized issue.  Things that you might be able to do even if you’re exhausted.  Things that aren’t too big to add to plates that are already full.

Mouse-Sized Coping Strategies

  1. Know that you are not alone, crazy, lazy or “difficult.” If the response to this series has taught me nothing else, it has taught me that there are many, many people who have experienced some level of health stigma or healthy privilege as they cope with their illness.  For many of us, understanding that this is a real phenomenon, and that others have walked this path too, is powerful.  Remind yourself that you aren’t alone.
  2. Connect with others. Patient communities aren’t perfect, but they do provide spaces in real life and online for you to connect with others who share your experiences.  And as you are connecting, you can also practice step 3:
  3. Speak your truth.  Part of what allows privilege of any type to remain in place is that it is often invisible.  If these ideas ring true for you, put it in writing.  Carolyn Thomas did just that in this piece on her HeartSisters blog.  So did the author of the My Fainting Goat blog in her response about the deep roots of privilege.  As you can see in the comments on Carolyn’s piece, when one person shares, others open up as well.  The more of us who are speaking about privilege, the louder the voice becomes.
  4. Enlist advocates. If you don’t feel heard by your doctor, or your family–bring in a third party.  Find someone who does understand and ask them to assist you.  Sometimes, a neutral third voice is easier to hear.  This might be a therapist, a pastor, a friend, a patient navigator–there are lots of options.  You don’t have to do this alone.
  5. Stand your ground.  What you are experiencing is not imaginary.  You deserve to have your experience heard and respected.
  6. Don’t forget your self-care.  At the end of the day, you have to know yourself and care for yourself.  If you are too tired to struggle today, take a rest.  Remember to breathe.  Pay attention to the basics–sleep, nutrition, and exercise.  Get good emotional support.

Your Turn

Okay folks, now it is your turn.  This is not an issue that any one of us will fix on our own.  We need a community that is naming these issues, naming the ways that they harm, and supporting one another in pushing back.  What “mouse-sized” strategies would you suggest?

 

Image Credit: Photo by teclasorg via Flickr under Creative Commons License

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4 comments

  1. Hello again Dr. Ann. You’ve certainly finished off this trilogy with a bang-up post here. Loved all the ‘mouse-sized coping strategies’, particularly because you’ve nailed a key issue for many living with chronic illness: although we may be agitated about a particular issue, we may not be able to muster up the energy to take on what seems like an elephant-sized challenge except in tiny little mouse-bites.

    I too was so impressed by the quality (and the ferocious spirit) of so many of the readers who left comments on my Health Privilege piece on Heart Sisters (which was 100% inspired by your first installment here). For example, I loved the comment from JetGirl who compared being ill with heart disease to Dante’s description of “sliding down the hairy leg of the devil”. Now there’s a compelling image for you…

    My own mouse-sized suggestion: I’d encourage your readers to read ( but not just read – leave a comment!!) on Dr. Victor Montori’s “Minimally Disruptive Medicine” website. He and his Mayo Clinic-based team really ‘get’ what they refer to as “the burden of treatment” patients often live with on a daily basis – in a way that’s clearly foreign to those enjoying the luxury of “healthy privilege”. For example: http://minimallydisruptivemedicine.org/2012/01/10/minimally-disruptive-medicine-comes-alive/

    Many thanks for introducing me (and thus my readers, too) about the concept of healthy privilege.
    cheers,
    C

  2. […] guilt; Jan writing movingly and honestly about the true realities of living with stage IV cancer; Dr Ann Becker Schutte on coping with health stigma; Eileen about the strain cancer puts on relationships; Chris sharing […]

  3. Very well done Dr. Ann! Thanks for sharing this! As an autoimmune sufferer with an attitude, here are some additional words of advice you stirred up in me:

    1) Don’t be ashamed. Connect with other people and understand your condition as best you can. This helps you to hold yourself accountable for the things you can control, and let go of the things you can’t. This way you can respond to the privileged with a calm assurance thinking, “Hey, you’re right, if I were healthy that’s what I would do too, but I’m not, and I’m at peace with that.”

    2) Find your optimal state of health. By ourselves, we’re like cavemen banging rocks together. At a minimum we should find fellow sufferers with cases just like ours and consider what works for them with an open mind. There may not be a cure for everything, but if you can achieve 50% relief then that is a major lifestyle boost. Don’t let your condition define you. Some people only tepidly seek relief because their condition has become a part of their identity. They fear the cure. Trying to minimize your health problems IS being true to yourself.

    1. Brett,

      Thank you for your thoughtful responses. I think that many of us struggle with the balance between reaching for our best health and not falling into the trap of being self-critical or pushing too hard. That balancing act can be a tricky one, particularly when you’re coping with chronic illness. I appreciate your wisdom and your willingness to share.

      Warmly,
      Ann

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