Turning our Anger into Action

For those who have been impacted by misdiagnosis or medical error.

Recently, I was moved by an LinkedIn post by Gautam Gulati, MD, MBA, MPH, CID who shared his diagnosis after 10 years of searching, multiple misdiagnoses, ineffective treatments, and harm.

“I choose to be grateful & energized,” he writes. That is such a powerful and life positive statement. Having been through a 8+ year diagnostic journey for my son, a 4+ a year diagnostic journey for myself, and a 3+ year diagnostic journey for my father, I recall feeling relieved, grateful for an answer, angry at the unnecessary delay, and hyper-focused on treatment and recovery.

Many of you are in this same place I was, having experienced a medical error or a diagnostic error yourself or for a loved one.

I am thankful to know and work with many advocates for the patient community who have been in the same place as Dr. Gulati and have chosen to step up and do their bit. They have started their own organizations to educate patients and the medical community on a specific diseases that are highly misdiagnosed; they serve on advisory councils for hospitals that harmed them; they serve on Boards of Directors and advise clinical trials and medical studies; they speak and write and protest. They are inspiring.

I didn’t even know this world of advocates existed in 2008 when we finally got an accurate diagnosis and a working treatment plan for my son. Instead it was a sense of righteous anger that drove me to educate and advocate for others in my community. I focused on a specific disease, at first.

For years, not knowing what I know now, I blamed the individual doctors for all of it. Yes, some of them were poorly trained, others were arrogant, or lazy, or uncaring. I wrote and called and spoke about the high diagnostic error rate for several of the medical conditions he was incorrectly diagnosed with and treated for.

Nine years later, I began to learn about the training, systemic, and cognitive errors that were at play, especially for my son’s case. That is why in 2015 I chose to focus on helping others by doing my bit to reduce diagnostic error, the most common type of medical error, and improve patient safety.

If you are still caught up in limbo, searching for answers, it’s right that solving it is your primary focus. So many of you write me daily, seeking guidance or support or active help. I’m not a doctor and can’t answer medical questions but I can help with the process. I often ask them this question after:

What comes next? What will you do now you have answers?

I recognize not everyone can get to the same level of acceptance that Dr. Gulati reached on the day of his accurate diagnosis. There are millions of people in the US who were inaccurately diagnosed; many of them multiple times, Or whose family members died from the wrong diagnosis and treatment, or from a surgeon’s mistake or ignorance. They are not grateful. They are angry. They are frustrated. They are stuck in a cycle of blame and seeking justice.

Anger, in and of itself, is problematic.

Yes, anger can be a tool. It can move us to ask questions, to take action, to find solutions. It was my fuel for years and I accomplished some things…until I learned it wasn't helping me move past the pain I had experienced while fighting for my son’s life.

Anger can be a trap. Like a sand trap, it can suck you in til you reach a place where there’s no more oxygen to fuel you. And while anger may fuel action it often doesn’t solve problems. writing all caps posts on Facebook or Twitter won’t prevent others from suffering as you or your family member did.

Anger can harm you mentally and physically, now and later. In addition to the mental toll that anger can cause, there are corollary brain impacts like poor decision making, or eroding communication skills as you rant online or with your friends. It can especially mess with your listening and empathy powers.

Medical studies show unresolved anger over time can increase the production of stress hormones which raise blood pressure and increase plaque in your arteries, clogging them. That can lead to Coronary Heart Disease (CHD) and Stroke, even Diabetes. And surges of anger can cause, “heart attacks, lethal heart rhythms and rapid weakening of the heart muscle itself, a condition known as stress cardiomyopathy or broken heart syndrome that occurs primarily in women.” Ever heard the expression, he blew a gasket? Well, your vascular and cardiac system is that gasket. 

I urge you to turn your anger into action. Here’s how:

No one is expecting you to start a new disease-specific foundation or a nonprofit to solve the healthcare problems you encountered. But those of us who are working toward equitable solutions hope you will do your bit. There are some easier steps to turn your well-earned rage into helpful action. And remember, if this happened to you, it has happened to others. You are NOT alone!

1. First identify what went wrong. If the disease is rare, than diagnosis and dollars for research and education are needed. If the disease is common and the diagnosis was delayed, then the issue is probably education or diagnostic error. If a medication error or a surgical error happened, then that would be your focus. If you can articulate the problem, then you can do the next three steps.

2. Volunteer for an existing cause-related nonprofit. That gives you control over how much time and energy you expend. First, find the right organization that is focused on the same issue you experienced. There are several ways to do this.

   1. Do an online search for your keywords. Doing that led me to organizations where I have volunteered since 2015. For medication error, as an example, type “find nonprofit group for medication error” into your search engine, You’ll see some familiar and new-to-you groups. A quick visit to their webpage will let you know if they are a volunteer organization or a professional society. Watch out for malpractice attorney groups who buy Google listings pretending to be a nonprofit to bring you to their website.

   2. A good alternative is to ask ChatGPT for a list of appropriate organizations. Continuing the medication error example, enter the query “List nonprofit groups focused on medication error where I can volunteer.” It will direct you to five noteworthy nonprofit organizations. If you don’t like the list, tell ChatGPT what you’d like it to fix. For example, you can change it to organizations active in your area.

   3. Another search tool is Guidestar, which rates nonprofits for financial viability with links to their websites. That way you know the organization is viable and reliable.

   4. If you can’t find a nonprofit that takes volunteers, you can always make a donation or get on their mailing list for regular updates about their successes.

3. Share your knowledge. There are two audiences for what you learned. Other patients can benefit from what happened to you but so can medical professionals. Personally, I find writing about patient safety issues like diagnostic error very cathartic. Maybe you would, too. Share your story with family, friends, and/or your church group. Post about it on social media or make a TikTok video. Keep it to a few hundred words which is much harder than it sounds. Editing your story to its essential learnings –– with a beginning, middle, and end –– will help distract your anger while it helps others in your situation.
   
   A tip if you choose to do this: Try to stick to the facts and not your emotions. Avoid sharing your rage online. That will only feed your anger and cut you off from community; or worse, it will bring folks who share your rage and you feed one another in an endless loop. That can lead to feeling more hurt and create more personal harm.

   
   Your story can be enlightening to medical professionals, too. Patient advocate Dan Berg lost his beloved 15-year-old daughter Julia to diagnostic and medical error. Instead of stewing in his anger and sorrow, he took the hospital’s Chief Medical Officer’s apology and offer of financial remuneration and created something new. Now Julia’s parents host an annual seminar for University of Minnesota medical students about the need to acknowledge uncertainty and avoiding diagnostic error. It’s a very successful seminar.

4. Volunteer at your local hospital. Even the one who harmed you or your loved one. The best way is to join a Patient Family Advisory Council, known as a PFAC. Many hospitals groups have one. At its most basic, a PFAC is a group of current and former patients and family members convened by the hospital “who collaborate with hospital staff to improve the care experience.” They advise the hospital “on matters including, but not limited to, patient and provider relationships, institutional review boards, quality improvement initiatives and patient education on safety and quality matters.” The Institute for Patient- and Family-Centered Care has great resources for anyone interested in learning more.

Those of us active in the patient experience space –– the patient advocates, the patient volunteers, patient experience professionals and researchers –– urge you to join our efforts to fix healthcare. We welcome your questions. We’re happy to help you identify how you can participate in our groups or direct you to someone who can guide you better. Follow me on LinkedIn or Facebook for posts about this topic or to check out my list of connections there for people working in the arena you are most interested in checking out. Wishing you much success in the effort to improve healthcare for you, your family, and communities.

© Helene M. Epstein 2024