Tuesday, June 11, 2013

justifiably annoyed or overly sensitive? you tell me.

I read an article a little while ago about a Conservative politician who just finished treatment for breast cancer. The article was probably meant to make me feel inspired but instead I just go angry.

I felt guilty for not being more charitable (is that a word used in this sense by anyone other than those raised Catholic?) and disappointed in my own lack of empathy.

I bookmarked the story and decided to postpone writing about it until I could understand my reaction.

It's been a couple of weeks. I reread the article and got angry all over again.

I work very hard at not being judgmental of others' choices. This is a hard thing when you hold strong opinions but I do try my very best to underline that I've made what I consider to be the best choices for me. So why am I so annoyed at the choices of someone else?

Paula Peroni (the Conservative politician from Sudbury) is to be commended for her strength. Her approach to diagnosis and treatment seems to be very different from my own. She wore a wig, never stopped working, and told no one until after she had finished treatment. She seems most concerned that someone will think less of her for having had cancer. Perhaps that comes with being in politics.

While Peroni seems to stress that these were the right choices for her, the writer of the article seems to frame them as a goal to which we all should aspire. And Peroni herself seems to frame the path she chose as being the most virtuous:
"When you tell people you have cancer, "you put a responsibility on them they didn't ask for," said the longtime trustee with the Sudbury Catholic District School Board.
They care about you and worry about you, so you don't want to add to their burden.
'It's nice to tell people (about it) when I'm on this side of it so they don't have to do the guilt and the worry or the condolences or whatever it is they feel is necessary,' said Peroni."
We all have a right to privacy but someone who chooses to stay private is not morally superior or more altruistic than those of us who make our struggles more public. I don't think it's just a "burden" to share our stories. In my experience, people genuinely want to help and I think that helping each other makes us stronger individually and together.

There are many kinds and cancers and as many kinds of treatment. Some people get sicker than others from the illness and its treatment. Some need more help from outside the immediate family, for a whole host of reasons. There is no shame in this.

And finally, perhaps it's my own metastatic status that colours my response. We are immersed in a culture of pink and a belief that you've just go keep a smile on your face, go through it and move on - and if you can do it without missing a step, you are to be applauded. Those of us with mets very often feel invisible.

Is this all just my own baggage speaking? Go read the article. Come back and tell me what you think. I'd love to know.

Possibly gratuitous and definitely snarky addendum: 

"Peroni believes she is where she is supposed to be and if there was ever a time for Sudbury 
to go Tory blue, it is now." Does this "work that needs to be done" involve deep cuts to the health care system from which she has so profoundly benefited?


Bob said...

She made some choices. I don't know I could have made the same choices, and when I got my bladder cancer, I didn't.

I guess she has a right to her decisions. But I would hate to think of others not reaching out for support because she didn't.

Lene Andersen said...

she made some choices and they were hers to make, but I do agree that the way it's presented will likely make a lot of women feel like they should grin and bear it. I see that impulse all the time in the RA world, as well — that bearing extreme pain with a smile on your face and keeping it all inside is somehow to be admired. It's crap. It's a myth made up by people who aren't sick so they don't have to be uncomfortable by being aware of your pain or illness.

Also, whoever cobbled together that article is not a good writer.

AnneMarie said...

It's the wording. For Sure. There is no right or wrong way to approach an illness like cancer. However, I think we must be mindful when we speak to convey that we are speaking to what WE feel is best in our circumstances.

They care about you and worry about you, so you don't want to add to their burden.
'It's nice to tell people (about it) when I'm on this side of it so they don't have to do the guilt and the worry or the condolences or whatever it is they feel is necessary,' said Peroni."

Would have been far less offensive if she said,

"I did not want to worry those who care about me. I was more comfortable dealing with it on my own and sharing my experience afterwards. It would have upset me to think my friends and loved ones had an obligation to do something."

Her words presume the reaction of others instead of sticking to her own reasons. Definitely not a good message. And yes, it does come off a bit "I am my own hero" and "If you (those of us with BC dx) can't do this silently, you are 'less than' ..."

There is no right way or wrong way to do cancer... there's just the way that works for each of us. And, a metastatic diagnosis is an automatic game changer.

Sending support and (a bit of justified irritation in solidarity), too...


laurie said...

I agree with all three of you. She has the right to choose every step of the way in treatment. It's the implicit judgment that bothers me.
And Bob, I would feel bad about that too. Tim and I were just taking over dinner about how it can be hurtful to deprived of the opportunity to support and care for someone going through a critical illness.

Amy said...

I'm confused, in that last quote it seems like she feels that because she survived cancer it proves that people should vote for her?

I would feel absolutely terrible if someone I loved didn't tell me that they were sick because they didn't want to burden me.

Jim's Girl said...

I get the same feeling as you do, Laurie. Maybe I would have tried to muscle through, working through chemo, but my mets symptoms simply made that impossible. To each, her own.

But I just can't imagine not telling people. I'm a chatty Kathy, I guess. More than that, I can't imagine suffering without my friends, family and colleagues. Their love and support buoyed me tremendously. I don't think they would begrudge me for making them worry. I like Anne-Marie's suggestion of how she might have better phrased her concern for others.

In the end, I wouldn't want anyone to think it is normal to work through treatment. It may or may not be possible, but it sure shouldn't be expected.

Kate, of Kate Has Cancer

Titus 2 Thandi said...

As someone NOT dealing with cancer..I'd be very SAD that you didn't share such a life, mind-altering situation. For me, if we know each other, then that means we share our joys and sorrows. For you not to share such a thing would make me feel a bit sad. Maybe it's because of the wording..But 'burden' isn't the way I have viewed any cancer diagnosis that has come into my life. Then again, I fell most useful when being caring. And by my 'care' for you, I feel most alive. Be it by baking, cooking for you, getting stuff from the shop, holding your hand... Maybe it's because she seemed to breeze through it that it just sounds off to me? I don't know. But I don't like the way they put her message across and my view is just from someone whose watched others in my life deal with cancer. I don't like the almost superior tone.

Unknown said...

As you said above, in your comment, "it's the implicit judgment."

When I first got diagnosed, my intuition was to only tell a few people. I realized after that was because of the negative energy associated with telling people, and the negative energy they emit once you have told them. It's not about you - it's about them and their reaction. I couldn't cope with having to help them get over my problem, so I just kept it to myself. Later, when it became obvious that I was having chemo, I was better able to avoid the negative people and learned how to just deal with my problems and not worry about helping them with their problems. Now, I can help people with their problems, so I do.

Anyway, you are right that the thing that set you off was the judgmental tone.

Ken Craft said...

I think her position is informed by having had a child die in an accident. I think she was adopting the same coping mechanism that had worked for her previously.

Facing Cancer Together said...

One thing is for sure, I don't think anyone should feel guilty for feeling sick while sick. Not sharing was her choice. But I really don't believe it needs to be everyone's choice. Certainly, I would have exploded if I hadn't shared. ~Catherine

laurie said...

Thanks so much to all of you. Yes, the over all tone made me bristle and that is perhaps the fault of the writer and not Paula Peroni. The one statement I outright take issue with is the one about being a burden. I don't judge someone for telling as little or as much as they choose but I think it's wrong to assume that you're doing your friends a favour by with-holding.
You are all so articulate and insightful. Thanks for a great discussion.