You can let adversity define you, or you can redefine your adversity.

When tragedy strikes, no matter what causes it, you are simply left to cope.

It might be debilitation from a bad accident, or losing a family member to a badly skilled surgeon, it might be a hospital infection, medical bankruptcy, or even a difficult diagnosis – yours or a loved one’s. Any sort of tragedy, not even just those related to healthcare, or life.

Elisabeth Kubler Ross is well-known for her work with the bereaved, and her designation of five stages of grief. Her stages include denial, anger, bargaining, depression and acceptance. No matter what has caused your tragedy, nor what the outcome is, including a problematic journey with the healthcare system, you will likely experience some or all of Kubler Ross’s stages.

The Sixth Stage of Grief – Beyond “Moving On”

But I think there is a sixth stage not named by Kubler Ross.  I call it “proactive survivorship.” Proactive survivors go beyond the five stages to create something good for others. They move from the mindset of being a victim, to the mindset of being a hero to others. It might be the sixth stage of grief – or maybe it’s the first stage PAST grief.  Maybe it’s the proof that someone has survived their difficulty, even if they haven’t forgotten it.

Proactive survivorship isn’t limited to healthcare system tragedies. You’ll readily recognize these proactive survivors:

  • John Walsh became a voice for innocent victims, and the host for America’s Most Wanted after his son Adam was kidnapped and murdered.
  • Lance Armstrong developed LiveStrong after battling testicular cancer.
  • Michael J. Fox developed his Parkinson’s Foundation after he was diagnosed.
  • The Susan G. Komen Foundation was developed after Nancy Brinker lost her sister Susan to breast cancer.

Proactive survivors take many different approaches to their work. From developing a non-profit advocacy organization, to making movies, to speaking out, to teaching, to writing books, different survivors use their talents, knowledge and experiences to improve others’ lives through prevention, research and fixing broken systems.

There are many instances of proactive survivorship that resulted from medical mistakes or problems with the healthcare system, too.

  • The Empowered Patient Community was developed by Helen Haskell who lost her son to bad doctoring and drug errors and Julia Hallisy after her daughter died of cancer
  • Regina Holliday’s Medical Records Advocacy stemmed from the horrible last days of her husband’s illness when they could not get copies of his medical records, leaving him in terrible pain from kidney cancer.
  • Patty Skolnik’s son, Michael, suffered at the hands of a surgeon who should not have been performing brain surgery and Patty has worked to pass legislation in Colorado to make it more difficult for doctors to move out from under their malpractice by moving to another state.
  • Ilene Corina lost her young son to mistakes during his tonsillectomy and has dedicated her life ever since to making sure others stay safe in hospitals.
  • Sorrel King started the Josie King Foundation after her daughter died from a series of medical errors
  • Brad Schwartz lost three limbs to sepsis. In an effort to be sure others would never suffer from the mistakes that caused his sepsis, he started GNA Now (Greater National Advocates) to help patients find professional help.

There are countless more examples relating to healthcare and patient movements.

Why do people use their horrible experiences to create something good for others?

Because for some, anger and grief aren’t enough. They believe that using their own experiences to create something positive for others, perhaps to prevent others from experiencing the same problems and grief, are the way to get past their own bad experiences, or at least to begin to accept them.

If you have suffered a difficulty or a tragedy, here is why you should consider becoming a proactive survivor:

•  Proactive Survivorship provides choices. You determine how your tragedy will affect you. It doesn’t mean you forget. It doesn’t remove the sadness or hurt. It doesn’t mean you won’t deal with the outcomes. It means that whatever your harm was will always affect you, but that some of the edges may wear. Instead of letting it define you, you make your own choices about HOW it will affect you.

•  Proactive Survivorship tips the balance from negativity. You will begin to cope, and perhaps even thrive, improving your quality of life and others’ lives, too. It’s incredibly cathartic, a coping mechanism beyond anything other.

•  Proactive Survivorship changes your story. No longer will you be telling just a victim story so people will feel sorry for you. Instead you will tell a tragedy-turned-triumph story that shows your strength and ability to move on, and gives hope to others that they, too, can be survivors. As your new, more positive story takes shape, it may create a platform that allows you to teach others as you work toward those goals of prevention and improvement.

•  Proactive Survivorship helps you get beyond blame. Proactive survivorship gives you a reason to rejoice instead of blame. Done right, it means your tragedy improves the lives of others.

•  Proactive Survivorship gives you something to DO. Being a victim makes us feel powerless.  Being proactive moves us to take some control over our actions and feelings.  We begin to heal, or at least deal with it, in ways that help others. It doesn’t change the difficulty, or the initial outcome, but when you see progress, and others benefit, at least you will feel as if your tragedy was meaningless.

I challenge you today to begin thinking about what sorts of positive things you can do for others as a result of your own, sad, difficulty.

You can let adversity define you, or you can redefine your adversity. 

Choose your direction. Choose your story. It’s in your hands.


Photo: taken in Castle Combe, England (Cotswolds) in June 2014. This tree continued to grow and thrive despite a stone wall being built on top of it, probably hundreds of years ago. 

Trisha Torrey, Every Patient's Advocate

1 Comment

  1. Gary Votour July 8, 2014

    After my wife died, someone once said to me “From great adversity come great advocates”. That one statement is what pushed me to move beyond my grief and loss and try to bring meaning to what had happened to us.

    I’ve never been able to find a source for that quote, so I think it is simply what we call a “conventional wisdom”… a statement of obvious fact. I have, however found that others have tried to express it in their writings. Here are two excellent examples.

    “I’ve noticed in my life that the people who act as my angels are not some strange angelic creatures that seem almost untouchable, but are more real than that. They are people who have tasted sorrow, who have felt pain, and in a way, that makes them capable of being an angel. In their darkest moments they have become strong.”
    ― The Hippie, Snowflake Obsidian: Memoir of a Cutter

    “The strongest steel is forged by the fires of hell. It is pounded and struck repeatedly before it’s plunged back into the molten fire. The fire gives it power and flexibility, and the blows give it STRENGTH. Those two thing make the metal pliable and able to withstand every battle it’s called upon to fight.”
    ― Sherrilyn Kenyon, The Dark-Hunters, Vol. 1

Trisha Torrey