BlogCoping with IllnessGrief

Transforming Pain into Purpose

Dear Readers–I have an apology for you.  This blog space was silent last Friday with no explanation.  Sorry about that.  I overestimated by time management abilities.  It turns out that I can’t actually see all my patients, participate in a family wedding and get all my writing done in one week.  That was a good exercise in remembering my limits–but that’s another post.  So, with my apology, here is the post I intended for you to get last Friday.

The strongest sword is first held in the fire and then hammered flat. — Paula Wall, The Rock Orchard

 

Pain into purpose–Regina Holliday turns patient stories of loss and harm into art & advocacy that walks.

Why yes, this is another post reflecting on the Partnership WITH Patients Summit.  Why am I still talking about an event that took place three weeks ago?  Here are a few reasons:

  • The things I learned at the PWP Summit are relevant to my clients & readers–many of whom are pretty familiar with the experience of being a medical patient.
  • The stories that I heard at the Summit were powerful–and as I mentioned two weeks ago, I believe that stories need to be shared and honored.
  • Writing these posts helps me process the information overload of that weekend, so thanks for coming along on my ride.
  • One driving goal of the Summit was to create change–and I have a responsibility to be active in that.

So this week, I am focusing on one of the themes that I heard over and over during the Summit weekend.  In case you missed the background, both The Walking Gallery of Healthcare and the PWP Summit grew out of experiences that patients and families had of experiencing harm as part of their medical treatment.  If you want the original story, you can read Regina Holliday’s advocacy blog.  One good place to start is the post, “Pecking Order.”

Over and over throughout the weekend, I heard stories of patients and family members who had suffered immensely–often as a result of errors within our healthcare system.  Speakers had lost loved ones to hospital-acquired infections (for a good primer on how to prevent that, check here or here), been infected with hepatitis when health care providers re-used needles (for information on injection safety, check here), or suffered incredible pain from defective implants (for an education on implant safety, check here).  If you look back at that last sentence, you may expect that I heard from angry, outraged people–people who wanted payback for their suffering.

But the truth is, each of the links that I shared above is connected with one of the patients or caregivers who spoke at the PWP Summit.  And, instead of anger, each of the speakers at the Summit seemed to share a common passion.  They are committed to increasing education and awareness so that no one else faces the experiences that they and their families lived through.  One participant said to me, “I don’t expect to see a cure for my disease. I participate in research to help those who will come after me.”  That statement was consistent with the attitude of the entire Summit.  These voices calling for change were not about blame or anger.  They were entirely about a passionate commitment to transform their suffering so that no one else must walk through similar pain.  This echoed the passion that I see in many patient and caregiver blogs–a commitment to trying to smooth the path for others facing similar diagnoses.

So, I’m inviting you to think about this in terms of your life, and your experience.  What purpose can come from your own painful experiences?  What can you share with those who come behind you?

 

Image Credit: Ann Becker-Schutte

Disclaimer: As with Wednesday’s post, I am not affiliated with any of the organizations that I linked to in this post.  I am simply using those links as a way to illustrate the passion for change that I saw at the Partnership With Patients Summit.

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4 comments

  1. Wow, powerful post. Interesting the anger was taking a back seat….I’d be pretty pissed if someone re-used a needle on me…shuudderrriingg. And the infections from those super-bugs in hospitals… so sad, so devastating…but thanks for sharing that people are intentionally being uplifting..thanks!.

    1. Kathy,

      Oh, I’m sure that there was anger. It just wasn’t the driving force behind the work that they are doing now. And they are doing amazing work!

      Ann

  2. […] of owning your own experience as a patient or caregiver, and the opportunity to transform painful experiences into passionate advocacy.  Today, I’m going to talk more about how online relationships can be a true, genuine, […]

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