Carly Simon, Ketchup and an Advocate’s Secret Sauce

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Many readers of this blog (members of The Alliance of Professional Health Advocates) know we’ve been burning the candle at both ends trying to complete the build of the new APHA membership website.  Short of raising my two daughters, I think it’s the biggest project I’ve ever undertaken – just enormous – hundreds of resources and thousands of pages – and I’m happy that it is now complete! (Or at least as close as it will ever be – these things are never truly complete.)

Along the way, I’ve learned a few lessons about how to approach the work that can help you, too. And here is the bottom line to those lessons:

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Of Heroes, Trust, Discord, Arrogance, and Karma – Part II

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Last week I shared with you two stories of my physician heroes, why they are my heroes, their relationship to my work in patient empowerment and patient advocacy, and why you, too, should emulate their actions; their professionalism, their behavior, and the actions they each took to buck a dysfunctional system.

It’s all good, and true to karma, what went around came around – today good comes back to them. They both have stellar reputations within the community and among other physicians worldwide. Well-respected. Well-deserved reputations.

Which takes us to today, and the karma that has come around to one of the doctors who did not behave well.

I mentioned last week the very arrogant oncologist who led my misdiagnosis odyssey.  His arrogance was apparent in so many ways. When one of the lab reports referenced an additional missing lab report, not only had he not realized it wasn’t present, but then (after I figured out, and alerted him that it was missing), he told me he was sure it would make no difference anyway. (It did.) When I insisted on a second opinion before starting chemo, he yelled at me – I had no time to waste! I needed to start chemo immediately! (I didn’t.)  When I asked if there wasn’t some other form of treatment that might be effective, he admonished me for second-guessing him – how dare I! That I needed to stop looking on the internet for cures! (OK – he might have been right about that one, but I sure as heck didn’t believe that at the time, and it’s a d*mn good thing I kept looking!)

Once it was proven that he was wrong (as in – I didn’t die !), rather than simply own up to his mistakes or apologize, he instead wrote a three-page letter to me explaining how he had taken all the right steps in my case. Excuses and more excuses. Never mind that (had I not sought a second opinion) I would have gone through chemo for no reason. Never mind that, once I survived chemo, I would have suffered side effects for the rest of my life. And certainly never mind that on the other side of chemo, this very arrogant and condescending doctor would have been considered a hero for curing me of an incurable form of lymphoma. A paper would have been written about it, and future patients who really did have SPTCL would have received the chemo I received – and they would have died because it wasn’t really the right protocol.

(And – don’t forget – he would have made a LOT of money from treating me with chemo I didn’t need.)

Just a few years later, karma came back to bite him in the backside. Continue Reading →

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Of Heroes, Trust, Discord, Arrogance, and Karma – Part I

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This year I can tell I’m finally getting beyond the trauma. It’s a feeling of freedom to some extent, but sort of a shame to another. And you know me – I always end up analyzing these things (or, perhaps over-analyzing them) – enough so that I’m going to share some of that analysis with you.

The trauma I refer to was the cancer (lymphoma) misdiagnosis in 2004 that propelled me to change careers to patient empowerment, and eventually advocacy. By trauma, I mean that I was told I that in a few short months I would be dead, and that I butted heads with the very doctors who were supposed to help me manage my diagnosis, one a most-arrogant oncologist who, in God-like fashion, told me I was foolish to waste time getting a second opinion because “no one will know any more about your cancer than I do.”

Right.

On September 20, 2004 – 12 years ago last week – after three months of doing battle with the healthcare system, I learned from a hematopathologist at the NIH that I did not have lymphoma after all. There was no evidence of any cancer in my body. None. Zip. All these years later I have never had any treatment.

Clearly, no, I wasn’t dead in a few months. They were wrong.

Further, it cost me every penny of my savings to prove I did not have cancer, despite the fact that I had health insurance. (It was crappy, high-deductible health insurance, but I was single and self-employed, and it was all I could afford.)

Since then, every year on September 20th I have mentally celebrated what has become a rebirth of sorts. I have simply taken stock of all the positive life changes that resulted. I’ve tried to use that impetus to drive me past the PTSD that remained for so many years. It seems to work; I haven’t had a meltdown in more than two years, and life just keeps getting better and better.

I know I’m getting beyond the trauma because when Tuesday, the 20th rolled around this year, it was late afternoon before I even realized what day it was. In the past, I’ve dwelled on it for days before, and sometimes after… but this year, 2016, I barely thought about it at all. Hooray!

Of course, life lessons can always be gleaned from such an experience. So today, based on my misdiagnosis odyssey, I want to focus on behavior in the face of discord, and how it can have an enormous effect on one’s reputation and success as an advocate, just like it did for those doctors involved in my misdiagnosis. Further, over time, it can have an immense ripple effect, both good and bad – the part I call karma.

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Our Clients Need This ONE Skill the Most

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Twenty years ago, prior to self-employment and work in patient empowerment and advocacy, I was the marketing director for my local community college.

In so many ways I loved that job. It was different every day and allowed me to meet and get to know people I never would have known in any other way. It required me to get out into the college community to meet faculty, other administrative departments, and students. It required me to have good relations with the press, and because it was during a recession, it required me to be creative and clever to bring in new students. Community colleges attracted so many non-traditional students — those who were older, or had been laid-off, or wanted to change careers; they had such interesting backgrounds and dreams. And the biggest challenge – the advent of using the internet for marketing. Can you imagine? Attracting students by using the cool new surfing tool – the World Wide Web!

As I said… I just loved that job.

But, unfortunately, yes, there was a downside, too.

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Preventing Our Own Brexit, Saving Our Clients and Advocacy Practices

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The whole world was fascinated last month by Brexit: the vote in Britain to leave the European Union. Would they leave? Wouldn’t they?

But to me, the most fascinating part was what happened the next day. Once the vote had taken place and the (bare) majority had voted to leave the EU, those who had voted to leave began to learn the real truth of what they had chosen, and realized they had been duped.

Yes, duped. Because the leaders on the “leave” side immediately disclaimed the promises they made. Ooops! they said!  No, we can’t really apply the billions of dollars we send each year to the EU to healthcare. We didn’t really mean that!  We lied to you because we wanted you to vote our way!

How could those politicians make all those promises they never intended to keep?  How did the majority of a citizenry fall for it? Why, now, do many of those citizens who voted to leave the EU wish they could take back their votes, because they have changed their minds?

Brits can blame themselves – period – for not being smarter about reality. They voted for something that wasn’t true or possible because they believed and shared what they heard and read, never vetting possibilities or veracity.  They Facebook-liked, and shared, and re-tweeted, and Instagramed, and discussed in pubs, all that misinformation, disinformation, political venom, disdain and hostility – never fact-checking, never discerning the truth.

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They simply passed on messages that supported their own wishes or philosophies – even when they were lies.

… Exactly like we Americans are doing today with our presidential election and its issues.

It had quite the ripple effect. Because they shared all those lies and vitriol, the world became a more dangerous and unstable place. (Just what happened to your 401K the week after Brexit?  My point is made.)

So what does this have to do with health and patient advocates?

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