What Health Advocates Can Learn from 9/11

With the demise of Osama bin Laden, I’m reminded of experiences I can share with patient and health advocates and navigators that will help us do our jobs better.

Many readers of this blog know that the reason I do the work I do is because I was diagnosed with a rare, terminal lymphoma in 2004. Being told I had a terminal disease was heart-stopping and terrifying. Even today there are certain triggers that drum up all that emotion. Post traumatic stress rears its ugly head….

Of course – I don’t wish that for anyone who ever reads this blog! However…

I believe that to truly understand how horrifying such a diagnosis is, you have to live it. But if you have never lived it, I can give you a metaphor. If you will give this some thought and embrace it, you will become a better advocate, because you will better understand how your client feels.

Close your eyes, and think back to 9/11 – and 9/12, 9/13, and those subsequent weeks and months…. Think back to the moment you watched those planes fly into the World Trade Center on TV, heard the news, saw the photos, spoke to a loved one, cried. Embrace the fear you felt. Remember that horrible feeling that we in America had lost our innocence, but even worse, any sense of security we had felt our entire lives to that point. We became afraid of doing ordinary things – being in crowds, flying in planes – our everyday lives were disrupted in ways we never could have imagined. And – we knew we could never go back to the innocence of 9/10. We had to learn to deal with it.

People dealt with these new fears in different ways. Some wouldn’t venture from home. Others couldn’t stop watching TV. Still others just wanted to wrap themselves with family and friends and talk, talk, talk. Some of us lost people we cared about. Some moved away from New York or other large cities and returned to their places of birth. We all re-embraced the concept of home and hearth because it represented security.

THAT is how someone feels who has just been knocked off his or her keister with a frightening diagnosis. THAT is how your clients feel. Even if they haven’t been dealt a terminal diagnosis, they are contacting you (for themselves or a loved one) because they have that level of fear, loss of control and security, that utter despair because they don’t know how they can fix the situation.

In 2001, we looked to the government to fix our fears and losses. These almost 10 years later, they still aren’t fixed, despite the emotional boost bin Laden’s killing creates. In truth, they never will be fixed, really. If your client is diagnosed today, they don’t have 10 years – and they will look to you to make it as good as it can be as quickly as it can be improved. You may not be able to fix it for them either. But they want and need you to try.

Included in their needs is empathy – a trait many advocates are able to share with their clients. Interestingly, I can often tell when I talk to an advocate whether they have experienced a horrible diagnosis themselves, whether for themselves or loved ones. There is a certain passion, a certain drive…. Yes, a certain empathy.

But not all advocates have had that experience. For those who have not, I encourage you to think back to that terror you felt on 9/11. It will give you a better sense of what it’s like to live in your client’s shoes, and will help you be more accurately empathetic.

That empathy you bring to the table is what separates you from every other provider. And that’s an important value an advocate adds to her clients’ experiences.

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