When Helping Doesn’t Actually Help

As you know, I’m dealing with some pretty severe breast issues.  If you don’t know, or are a newer reader to this particular blog, I’ll sum it up: I have BRCA. To put it gently, my risk of developing breast cancer is one in two.

Yes, those odds are terrible. Yes, those odds scare the hell out of me and my husband. Yes, those odds make me look down at my breasts, sigh and think that Angelina Jolie might have been on to something, getting rid of those two mounds of “useless flesh”. To put it bluntly, this is truly some scary shit.

I’ve done a lot of research. I’ve had a lot of appointments with my breast specialist. I’ve had part of my left breast–referred to as “Leftie”– removed because of pre-cancerous cells. I’ve swallowed a lot of tamoxifen over the last several months. I’ve been through a lot of crap. I’ve been told that I’m brave, that I’m strong and that I can beat this.

I’ve also found some truly horrible advice online, advice that this article details. It also tells you why you shouldn’t offer that advice, for three very good reasons.

Now, let me first make things clear: I don’t see it as an act of violence when someone gives you bad advice. The person that is telling you that colon hydrotherapy “cured” one of their cousins twice removed isn’t actively seeking to harm you. They want to help.

They just don’t know that they aren’t helping you. With that said, we’ll continue after the jump.

If you’re a religious person, for the love of God, don’t tell someone with cancer that if they’d just drink juice (or take vitamins, or pray or have a “positive attitude”) that they could cure themselves.

And if you’re not a religious person, for the love of reason and decency, don’t tell someone with cancer any of these things, either.

First of all: PREACH. Seriously, a good 99.99999% of the “cures” I have read about online involve cleanses, homeopathy, eating a raw food diet, and looking at the bright side. Seriously. If I thought any of that would help, I’d be doing it. Any and all of it. Hell, I’d have myself hooked up to an IV of kale right now if it would stop Leftie and Rightie from turning on me!

The thing is, none of this has been proven to do anything to help cure–or in some cases, prevent–cancer. We have anecdotal stories and little else. We hear second and third-hand information that “this will cure stage 4 lymphoma” or what have you. But that’s all we have: stories. In fact, most scientific studies prove that these “cures” do nothing or at best, act as a placebo.

Oh and the idea that “being positive” will cure you is just a form of sympathetic magic. The basic idea is if you live your life well, things should turn out well for you because like attracts like. It’s something that’s been used in folk magic for thousands of years. There are many neo-pagans who use it today. Even the idea of “karma” in Wicca subscribes to that very idea. It isn’t medical advice and it shouldn’t be taken as such.

As anthropologist S Lochlain Jain wrote in Malignant: How Cancer Becomes Us, “the huge and punishing self-help industry preys on fear and adds guilt to the mix. As one woman with metastatic colon cancer said on a retreat I attended, ‘Maybe I haven’t laughed enough.’” Talking at someone with cancer about what they should do, rather than being with them in a morass with no easy answers, is not you helping them. It is you unfairly shaming them for having failed at self-help, which isn’t even a thing.

I have mentally beaten myself up for eating MorningStar Farms facon, as it contains soy. Soy can turn into estrogen when consumed. The type of breast cancer that I could develop adores estrogen. I have asked myself if eating all of those tasty, meatless strips could have been a factor in this diagnosis. I have asked myself if, in some small way, did I contribute to this? Am I at fault, to blame for what is going on inside of me? Did part of Leftie have to be excised because of me? Did my craving for fake pork cause all of this, like one big domino effect?

There’s only one main problem with this: my mother has BRCA as well. This is genetic. I was, quite literally, born with this. My eating those facon strips are probably the very minutest factor in my diagnosis. It wasn’t the facon. It was my very genetic make-up that turned on me. There really wasn’t a lot that I could do differently to prevent this. No matter how much I laughed, nor how much kale I ate, or how many herbal supplements I took, there was no way of changing this.

I can’t change my genetics. Maybe one day, science will find a way of repairing this sort of mutation.

It is hard to be with people in grief. It is hard to be with people who are facing death, or with their caregivers. The next time you are, don’t give them stupid advice – they aren’t stupid. Trust they’ve given more thought to their course of treatment than you did listening to that public radio story. Trust yourself to just be with them in the unknown.

Being around someone who is dealing with this sort of illness is not fun. Hospitals, no matter how brightly the waiting areas are decorated, are uncomfortable places to visit. It reminds us of something truly excruciating: our own mortality. It is not easy to walk into a hospital and sit by the bedside of someone who is terminal. It’s not easy to hear the less than stellar outcomes of an MRI or an ultrasound. It’s not easy to hear how badly someone feels on chemo or how they have an appointment for surgery in a month. It’s never easy to hear the words, “I’m terminal.” But sometimes, that’s what we need from you. We need someone to listen. We need someone to simply be there, even though it’s painful and frightening to stare the unknown in the face. But it can be the best gift you can ever give someone in that situation. I’ll close with this, as it seems appropriate:

Trust yourself to love them in the condition they’re in, instead of ignorantly and egotistically giving useless advice that won’t ultimately change their prognosis. One of the last and most frightening lessons I learned with my sister in her final days was the importance of being with another when there is nothing to say or do. It is terrifying, to just be with a loved one and to admit you’re powerless to stop their death.

But it can be the most powerful, quiet and loving gift you can give each other.