The Importance of Self-Advocacy When You’re Ill

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Recently a good friend of mine was diagnosed with cancer. “Marie” is a cancer educator who frequently speaks in the media, and this was a recurrence of a previous cancer she’d fought a number of years ago. So Marie was careful to communicate to medical personnel her unique medical history–including the important fact that she’s allergic to latex.

Unfortunately, her allergy information did not get relayed to her entire medical treatment team, and she suffered painful and treatment-delaying side-effects after latex was used during a procedure.

In even the best medical institutions, information sometimes is miscommunicated or not communicated at all. Those in need of medical care place their lives in the hands of imperfect people. So what can we do to advocate for ourselves when we are ill?

We all need to become our own medical advocates.

  • Self-advocacy means learning how to speak up for ourselves, make the best choices for our health, and learn how to get information so we can make informed decisions. My husband Dan was recently diagnosed with a serious condition that will influence his mobility for the rest of his life. Dan’s first action was a consultation with his doctor, followed by learning more about his condition–it’s treatments and what he could do to leverage his health to his best advantage. He has much more to learn, and he will ultimately have to make a choice between surgery or wearing an uncomfortable brace for the rest of his life. His doctor can advise, but Dan will have to make the choice.
  • Self-advocacy is the ability to speak up for yourself about things that are important to you. This means you understand your illness. But it also means that you understand effective ways to communicate your needs. Skilled advocates understand their rights and responsibilities, and they’re able to formulate a plan for themselves.
  • Self-advocacy is critical at key points in our medical care. It’s especially important to be sure you relay critical information and know your medical priorities when you’re
    • establishing yourself with a new physician
    • are reviewing your care plan
    • are establishing a new care plan
  • Communicate critical information about your medical history, your philosophy of care, and your vision for your health plan. Ask a friend or loved one to assist you in tracking vital information, which often changes, and to communicate on your behalf if it becomes necessary.
  • Assume that systems and people are imperfect. Provide summaries in bulleted form that give critical information to each provider that you meet with–for instance, life-threatening allergies or your blood type.

Never forget the power of gratitude and forgiveness.

Every doctors, nurse, nurse’s aide, physician’s assistant, or technician I have ever met chose the medical profession because they care about people. I am grateful that I live in a nation that provides excellence in medical care. Our perspective as Americans is often limited by what we have experienced. One of my much-loved family members was born in another country and spent nearly a year as a child in a “C-rated” hospital (A and B rated hospitals are available only to wealthier patients) that did not have the most basic medical supplies. Learning more about the medical care available to many people in the world has significantly influenced my sense of gratitude for the medical care available to me as an American.

It’s never too late to thank your health care providers personally. Not enough of us do. I strongly encourage you to watch this story: The Thank You Project: A Mother Finds the People Who Saved Her Son’s Life.


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