Sharing Your Health Issues: The Responsibility Of Survivorship

This past weekend Oscar-nominated Hollywood and Broadway actress Jill Clayburgh died at age 66. The cause was chronic lymphocytic leukemia (CLL), which she had been fighting, privately, for 21 years.

As you may recall, I, too, have CLL and I was diagnosed at the same age, 45. For me, I am 16 and a half years into that a??battlea?? although, fortunately, I have been feeling very good in the ten years since I received treatment as part of a breakthrough clinical trial. While I have no symptoms and take no medicine I do not consider myself cured.

So when someone like Ms. Clayburgh dies of CLL after 21 years, I cana??t help but wonder if the disease will shorten my life too, even if I feel good now. That brings up the question of what do we do with the time we have when we know we have had a serious diagnosis and the clock may be ticking for us — or not?

In the notice of Ms. Clayburgha??s death it said she dealt with the disease privately. In my case, if you have ever come across my writings or interviews before you know I take the opposite approach. I am VERY public about my health in an effort to mentor others. I actually see it as my responsibility.

No one wants a serious diagnosis. But if you can beat it, or perhaps in my case, beat it back, can your reprieve or cure give you the chance to inspire others and to bring them helpful information? And if you are a celebrity is that part of the job? Some of it can be just with your actions. Patrick Swayze did that by starring in a television series even in his final days with pancreatic cancer. But, sadly, some other celebrities have used their illness or even a distant relativea??s as a way to make more money. These are not the actors who appear for a charity. These are usually the celebrities in medical product commercials.

On the one hand, I am glad they have a??gone public.a?? On the other, I think the effort should be selfless.

But you dona??t have to be a celebrity to make a difference by speaking out. For example, if someone is diagnosed with colon cancer, cana??t they make a difference by urging their friends to be screened. Now, with the latest news about the benefit of CT scans to detect early lung cancer, our biggest cancer killer and our second biggest killer overall (after heart disease), could a lung cancer survivor or family member of a current or former patient urge current or former heavy smokers to be screened? This could easily save a life.

Personally, I am very glad people are more apt these days to share their health issues. It is much less private than it used to be. However, I believe that sharing can be more for a purpose — to inform, inspire and empower others. I respect that Ms. Clayburgh didna??t feel comfortable doing that, as best we know. I wish she had, because in CLL, just the fact that she had continued acting would have given comfort to many people I know who are stopped in their tracks by the diagnosis.

So do we patients have a responsibility to others? I say, “yes.” What do you say?

By the way, I now have hosted more than 2,000 interview programs. You can find them by going to any search engine and typing in your health topic + patient power. Tell a friend!

Wishing you and your family the best of health,

Andrew