A Free Lesson on How to Talk about Disease.

Hello.
I have some thoughts.

Recently we learned that Senator John McCain was diagnosed with glioblastoma, a very serious form of brain cancer. This was probably the first time a lot of people in this country heard about the seriousness of glioblastoma.

The first time I heard about it was 2014. I was in radiation for breast cancer and each morning, while waiting for my turn to be zapped, there was a report about a woman named Brittany Maynard who, at 29, wanted to die.

She was also diagnosed with glioblastoma and after traveling (ice climbing in Ecuador, kayaking in Patagonia and climbing to the summit of Mount Kilimanjaro) she relocated to Oregon to take advantage of their Death with Dignity Law and then ended her own life on Nov. 1.

Brittany was the subject of much conversation in the radiation waiting room at Methodist Hospital in Brooklyn. Not only because she was so young and because she worked hard to fight back against this stigma that to die of a disease is to “give up.”

Which brings me back to Senator McCain. When the news broke, lots of people shared their thoughts including President Obama.

“One of the bravest fighters.”

“Give it hell, John.”

I know why President Obama said these things. It’s the same things I would have said prior to my diagnosis. But now I know better.

There were a number of really terrific pieces about the dangers of equating the language of war with the language of disease. It creates a dynamic that implies that were someone to succumb to their disease then they didn’t try hard enough. They didn’t fight hard enough. As if to imply that they just gave up.

There is no giving up with cancer in the same way there is no “trying harder.” Cancer isn’t like that. When people told me that I would be fine because I was a fighter or I was brave I was never sure what to say. I wasn’t brave. I was terrified. I wasn’t a fighter. I was doing the things the doctor told me to do to increase the likelihood of being NED (no evidence of disease) at my next scan. Because there is no cure, doctors do not use that term. You cannot be cured of cancer. You can only have no evidence of disease.

So when the news broke I went to twitter like everyone else and voiced my opinion.

And another user responded:

https://twitter.com/rtulshyan/status/888520243479326720

And I said to myself HEY LOOK A TEACHABLE MOMENT and got to work. I thought I would share my responses here so that other people can have the opportunity to learn how to talk to someone who is ill. And before I get started, I want to stress that I completely understand how hard it is to be faced with the mortality of someone you love, someone you work with or someone you’re friends with. I get it. It’s hard. But telling them they “got this” doesn’t make it easier. Got what? What is there to get? Cancer is me. It’s a bunch of rogue cells causing trouble and my immune system is ignoring it.

So here’s my free advice on what to say and what not to say to someone who is ill

Remember too, that it is okay to be unsure. It is okay to be scared. It is okay to think about it not working out for the best.

It is okay to think about them dying. Because trust me, they are thinking about it.

We are all going to die. Dying is what makes us all so beautiful. Knowing it can’t last is what makes it so special. As my friend Lori once said “We are humble and radiant and temporary.”

Temporary. All of us.

I hope this helps.

Peace, love and starbursts,

Ally