When tragedy strikes - whether it's the loss of a loved one from a medical mistake, to your own debilitation from an accident, to any other horrible event or development in your life including a difficult diagnosis or medical error that causes grief or pain -- there are many ways you might, or might not, cope with them.
Elisabeth Kubler Ross wrote about five stages of grief, which include denial, anger, bargaining, depression and acceptance. When you've been a victim of anything, including the healthcare system, you will likely experience some or all of those stages.
But there is sixth step, too. Although there are many unique and personal ways to emerge from the process of grief and its associated anger with a sense of empowerment and growth, one way certain types of people have found do this is known as "proactive survivorship." These proactive survivors take a step that goes beyond the five steps of grief to create something good for others. They move from the mindset of being a victim, to the mindset of being a hero to others. Not everyone will experience this, of course, but it is an interesting phenomenon to note.
We see proactive survivorship as a reaction in many forms of negative circumstances. Some examples are better known than others. 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 writing books, to making movies, to speaking out, to teaching, different survivors use their talents, knowledge and experiences to improve others lives through prevention 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 Hallisey who lost her teenage daughter to 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.
From hospital-acquired infections, to surgical errors, to drug mistakes, to misdiagnosis - there have been many who have created advocacy movements, even influencing health policy, as a result of their bad experiences with the healthcare system.
Why do people use their horrible experiences to create something good for others?
Because five steps of grief aren't enough for them. They need that next step - prevention and improvement - to get past their grief and to add to their own quality of life, post-tragedy.
Here are some of the benefits of taking that sixth step - proactive survivorship.
Proactive Survivorship gives you choices. You can decide how your tragedy will affect you. It doesn't mean you forget. It doesn't make the hurt go away or take away the sadness. It doesn't mean you'll ever really get past that post traumatic stress. It doesn't mean you won't deal with the outcomes. It means that whatever your harm was will always affect you, but that you are making choices about HOW it will affect you.
Proactive Survivorship becomes a constant backdrop to your entire life, but not in a negative way. It means you learn to cope, and perhaps even thrive, improving your quality of life and others' lives, too.
Proactive Survivorship gives you a story to tell. It's not a victim's story you tell so people will feel sorry for you. It's 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. It may even 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. When you've been a victim of anything, including the healthcare system, you will go through some or all of the Kubler Ross stages, and that's all you really need to cope and stop blaming. But 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. If you have felt like the victim, but knew that if you could just DO something, then you could begin to heal, or at least deal with it, then proactive survivorship is what you were referring to. It doesn't change the difficulty, or the initial outcome, but it gives you a purpose that helps you get past the grief of the original problem or tragedy.
If you have received a horrible, life changing diagnosis, have suffered some sort of accident or medical mistake, or if you have lost someone who has suffered any of these, consider positive survivorship as a goal - as your sixth stage of your grief.