An Anniversary, Meltdowns, Blessings, and Fuel for Advocates

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Please indulge me today. I’m going to share a very personal experience I rarely think about anymore, in hopes it will propel some good advocacy.

Sometimes months go by when I barely give it any thought. Other times, like lately, it seems like everywhere I turn, I just can’t escape it. So here you go:

It’s the topic of misdiagnosis, my 2004 experience, the emotional trauma, and then, the blessings of joy and gratitude that have resulted. It’s those blessings I think we can all learn from.

June 30th (just a few days from now) is the anniversary of the heinous misdiagnosis I suffered in 2004 that caused me to change directions in my life and career. While early-on the experience weighed heavy on me – constantly – today I don’t think about it unless something pops up to remind me.

It’s those reminders that have triggered the rest of this post. For weeks, they have been everywhere.

Two weeks ago, for our APHA Expert Call-in (teleconference), our guest was Io Dolka of Greyzone, who spoke on the topic of misdiagnosis. She taught us about the causes, the outcomes, the danger, the egos, the mistakes, and all the negative worlds that collide to cause (at least) one in ten patients in the US to be misdiagnosed each year. Those misdiagnoses cause PREVENTABLE DEATH (yes, death) for thousands of Americans, and tens of thousands more to SUFFER PREVENTABLE HARM annually (yes, each year!). Then she gave us good tools to help prevent our clients from being misdiagnosed. Informative, useful – and so important for advocates to understand.

Please pause a moment, and notice those words:  preventable deaths, and preventable harm – because the doctors and testing labs make diagnosing mistakes. I guarantee it has happened to you, or a loved one – and if it didn’t cause death, you may not have even realized it. But that doesn’t make it any less of an error, nor any less dangerous.

My own experience was a cancer misdiagnosis – being told I had a terminal form of lymphoma, with only a few months to live, and an oncologist who insisted I start chemo immediately so I could buy myself an extra year. I’ve told the story many times, and won’t recreate it here, but in the end, despite the brick walls put in front of me for months, I was able to prove I had no lymphoma. No malignancy. And I’ve never had treatment.

I was one of those statistics. And – suppose I had actually gone through the chemo that was prescribed?  It makes me shudder. It caused me to develop PTSD – for years. And It really, REALLY ticked me off.

The biggest part of my story is not the fact of the misdiagnosis itself. Rather, the biggest part of my story is that I used my anger to create something good for others. With a belief that everything happens for a reason, I was able to parlay my bad experience into help for other people, including a role in helping to establish patient and health advocacy as a real profession that shepherds patients through the healthcare system, improving the quality and quantity of their lives.

I’m very proud of that. I even have a name for it: pro-active survivorship.

Unlike the great majority of those who suffer a misdiagnosis, my harm was “only” emotional and financial trauma, the loss of any trust in the healthcare system, and the loss of my savings. Remember – I didn’t have cancer. No treatment = no physical harm. But still today, the experience is measured by occasional meltdowns. post traumatic stress, usually triggered by something benign (watching a movie, reading a chapter in a book, hearing a story). It doesn’t happen nearly so often as it used to. But I never know when it will rear its ugly head.

Then, “rear” it did this week when the next reminders came along. Prevention Magazine quoted me in an article about misdiagnosis, then the Today Show came calling. I spent several hours with a delightful young producer who recorded my story, and then watched TV as my story set the stage for millions to learn more about how they, too, can prevent misdiagnosis for themselves or loved ones.

Those two events conspired to cause me to melt down – again. The contrast between that horrible misdiagnosis, and where I am today continues to overwhelm me.

But THIS week’s meltdown caused an epiphany, almost an about-face!  I honestly think that all these years later, with so much good work under my belt, those meltdowns are less about the trauma of the 2004 experience. Instead I think they are about sheer joy and gratitude for where “my advocates” and I are today!

  • I still marvel that I was strong enough, brave enough, and angry enough to fight the system the way I did in 2004. And I’m thankful that I did.
  • I still marvel that I was able to find a catharsis for my post-misdiagnosis anger, a deeper anger than I had ever experienced in my life (even counting my 1988 divorce – and that’s saying something!), that was eating my insides for months, before I realized that I could turn it into something else – something good.
  • When I wake up each morning, I can’t wait to start my day. My passion for my work, rooted in that 2004 experience, drives me to do more to support those of you – “my advocates” – to help even more people.
  • I derive my continued passion and drive from all of YOU – the advocates who work one-on-one with patient-clients every day. YOU have come a long way; WE have come a long way, and I have big plans for the ways I will continue to serve you.
  • The worst thing that ever happened to me has turned out to be the best thing that ever happened to me.
  • I’m one of the lucky people who knows why she was put on this earth. And…
  • I join many of you who feel the same way. The patient-clients YOU work with enjoy better quality lives, and extended lives because of YOUR work. And that is a blessing!

Thanks for indulging me, letting me share my stream of consciousness. I know there are many of this blog’s readers who have stories that propel them to do the work they do each day too.  I invite you to share yours below. They provide hope – and fuel – for us all.

But even more so, I hope your takeaway from all this is that the work we do for others, whether we help prevent a misdiagnosis, or we hold a hand through surgery, or we fight to get an insurance claim resolved or a medical bill reduced – it’s a calling. And we are all blessed to have the opportunity to help others, no matter why or how we do it, or what might have led us in that direction.

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Comments

  1. Dorothy Kamaker  June 26, 2017

    Trish I enjoy your blog. You turn my thoughts (and some I haven’t yet formulated) into eloquent, punchy messages.

    My own path to advocacy was not as dramatic but still, every so often, I am inflamed when I am reminded of two incidents. Bear with me.

    In 2000 my 80 year old mother developed an incarcerated hiatus hernia. She became ill at about 0700. At 1100 my Dad took her to the ED of Sydney’s premier hospital. She vomited coffee grounds all day, got an IV at 1900 and eventually made it to surgery at 2100. Every intervention was unacceptably late. She was sent back to a poorly staffed ward at 2330 and respiratory arrested (she had been fluid overloaded by the anaesthetist in theatre with to compensate for her neglectful pre-op dehydration in ED) at 0100. Had I not called the code she would have died. After 2 days in ICU she was extubated even though I had said I wanted to be consulted first. She crashed, arrested and was re-intubated. My protestations were met with “she’s 80. Don’t expect too much” and the rationale for her early extubation was “We are pressed for beds”. I went white with rage. I am an ICU nurse and I know that is rubbish.

    I immediately had her transferred to the ICU in the private wing of the same hospital where the same intensivist managed her completely differently. Her clinical criteria suddenly prevailed and she did well, given time. She lived another 9 happy, productive years. Not once did that intensivist let up on the idea that he had “pulled her through” against the odds. That was not the time to rail against the poor treatment, immoral decisions or vainglorious doctors. My family and I were exhausted. But the kernel was sown. Her life was saved by her advocate.

    Then in 2012 I was still working in ICU when a very sick drug addict with pneumonia was in my ward. She was resisting psychiatric care and annoying the intensivist. This doctor snapped, screamed abuse at the patient and told her he would “not be manipulated by any junkie” and that she either complied with his treatment or she could go home. He then called her mother, repeated the abuse and told her to come and take her daughter out of his ward. Both the mother and daughter were cowered and complied. Before leaving the mother told me she felt she could no longer call an ambulance for her daughter as she would be victimised by this intensivist if she ended up in ICU again. I supported the mother/daughters’ complaint to the hospital patient advocate who ultimately told them that “you have to see this from the doctor’s perspective. He shouldn’t have behaved like that but he had your best interests at heart and he is busy & stressed and cannot spoon feed every difficult patient”. The mother said she wished she had never complained because now her daughter was branded a troublesome patient forever. The doctor (who was aware of the complaint) felt oficially vindicated and said so to the ICU nurse manager. 3 years later at another hospital I was engaged as an independent advocate to deal with a similar problem with the same intensivist.

    In 2013 I saw an advertisement for patient advocacy training and it was like a fuse had been ignited. In Australia, patients are very much dominated by their medical providers. They fear confrontation (ie questioning, collaborating, deciding) and still often perceive engaging a patient advocate as an act of aggression. I run free workshops teaching people seld advocacy (drawing heavily on you 10 Mistakes book) and my attendees are shocked and amazed to have their dysfunctional medical behaviour described and explained. This means I am often called to solve problems rather than prevent them.

    But two horrific experiences have had positive spin offs. I am trained, passionate, empowered and committed. I am 67 years old and this is the best part of my career yet.

    reply
    • Trisha Torrey  June 26, 2017

      Dorothy, Thank you so much for sharing your stories! I can see why you feel the passion, too. You are making a difference every day for the people who listen to you and appreciate your smart lessons. Keep up the good work! ~ Trisha

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