How To Share Your Patient Story about Bad Medical Care

Medical Mistakes, Patient Horrors, Denial of Care and Adverse Events

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When you suffer a medical error or mistake, or encounter an arrogant provider, or survive a troubled hospital stay - any problem that creates a story - then you want to tell that story to anyone who is willing to listen and be appalled, compassionate, and empathetic.

Granted, there are some healthcare horror stories we are afraid to share. Perhaps we are fearful of some sort of retribution ("If my doctor knows I said those things about him, he might not treat me well"). Or, some stories are embarrassing ("I don't want anyone to know I have an STD, so I had better not tell how the doctor insulted me"). But for most of our stories, we just want to get them off our chests.

The Benefits of Sharing Your Story of Bad Medical Care

As human beings, sharing our stories may contribute to our emotional well-being. Many of us feel cared for when friends share our horror and empathize with us. In addition, there is a certain amount of catharsis in the telling. In my own case, I was so angry once I got past my medical misdiagnosis odyssey, that sharing my story helped me diffuse my anger. Others might be able to weather their grieving or their sadness by sharing. Or, as Gramma used to say, "Trouble shared is trouble halved."

It's also possible to improve your life through your storytelling. Some people realize that their stories have created a platform for them to help others. I call these folks Proactive Survivors because they use their own experiences to prevent the terrible circumstances they experienced from happening to others. While the stories themselves will never improve the actual circumstances that instigated them, their lives take on a new passion and meaning as a result of the way they choose to cope.

The Risk of Sharing Your Medical Horror Story

The only caution about story-telling is that there is a point where it can become detrimental to our psychological health. Anger, sadness, and grief are natural reactions to bad circumstances and events. Sharing them after the fact is helpful as long as it aids healing. But dwelling beyond a certain point, different for everyone, can become such a drain that it begins to get in the way of healing. You'll know you've reached that point if your friends and family seem to avoid you (they just don't want to hear it anymore), or when months or years have passed and your story continues to be the first thing you think of when you wake up in the morning. That's the point where you'll need professional help to get past your story and begin to improve your outlook on life.

Guidelines for Sharing Your Story of Bad Medical Care

Wise storytellers know the following:

  • They tell their stories only once per listener. They know that repeating the same story over and over again to the same person may actually create a barrier to the relationship, and does not improve the circumstance itself.
  • They tell their stories briefly, telling only the most important and relevant details, not holding others "hostage" while they rant on-and-on. They know their listeners will appreciate brevity while they still understand the gravity of the situation. If the listener wants more details, they will ask for them.
  • They tell their stories factually and don't embellish them to make them sound worse than they were. Obviously, emotion will be part of the story, but making the emotion the central part of the story doesn't serve others, it is simply a way to vent.
  • They tell their stories at appropriate times, don't interrupt others' stories, and don't try to "one-up" by trying to make their story more impressive than someone else's. Stories should not be used to compare levels of bad; they should be used to help others understand.
  • They don't use their stories as excuses. The circumstance itself may be an excuse. For example, after suffering a hospital acquired infection, someone might miss weeks of work - that's reasonable. But there is no reason to use the story itself to get in the way of responsibilities. For example, just because you've been misdiagnosed doesn't mean you can't drive the carpool this week.
  • They use their stories to help others and focus on the benefit they bring to the listener - the "warning" aspects, not the "feel sorry for me" aspects. Telling about the arrogance of a doctor can warn others away from using that doctor. Talking about acquiring an infection in the hospital will help others be more careful when they, too, are hospitalized.

Where Can Patient Stories about Bad Medical Events Be Shared?

Sharing Stories In Person: Word of mouth is always very powerful. Whether it's a one-on-one conversation you have, or you belong to an in-person support group, sharing your story verbally allows not just the facts, but the emotions to come through the telling, too.

Audio or Video: You might consider telling your story in video or audio fashion, then uploading it to YouTube or Vimeo (video) or iTunes or Hipcast (audio.)

Sharing Stories in Writing

  • While some of us like to write in a journal, others prefer to publish our stories online, or in a book or magazine. Many of us have found that just writing down the facts and feelings about our suffering is cathartic. Here are some ways and places you can write your story:
  • Online support groups, representing every disease or condition, are available for your participation. If that sort of venue fits your circumstances, there will be many people just waiting for you to share.
  • If you are a proactive survivor, consider starting a blog about your experience in order to help others.
  • Write a book. The world of publishing has changed dramatically just in the past few years, and now it's relatively easy to write and self-publish your own book - a real one, cover and all - inexpensively, or even for free.
  • Doctor review sites can be helpful to other patients if the reviews are done fairly and factually. Learn more about writing reviews at doctor review sites.
  • If you want to publish your story online at an existing venue that welcomes stories about medical mistakes bad patient experiences, consider the following:
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