No more analogies

“A good analogy is better than gold, yea than much fine gold”                 Paraphrase of Proverbs

I think it is time to take a step back and examine what we are really saying when we say things like, “I am a fighter.”  ”She is fighting her disease.”  ”He lost his battle to x.”  ”I won’t give up fighting.”  Which leads to: “Oh, if you try x you may get better.”  ”I am sorry your spouse lost their battle to x.”  Or essentially just keep trying harder.  And then there is the belief all diseases can be prevented by just eating healthy and exercising.  Use natural medicine.  Essentially it is your own fault you are sick.

Sorry, but fuck it!  I have spent way too much time feeling depressed because if I am fighting this disease than I am essentially losing battles everyday.  Nothing anyone does will stop them from getting a chronic illness or disease.  Nothing will make an incurable disease go away.  And one patient is not better than the other because they think their choice of treatment is superior.

CSH associates says: “The author, Carly Weeks, makes the point that equating illness with a war, battle or fight with an enemy diminishes our understanding of the challenges and complexities of living with a serious illness. By talking about “a battle against cancer” (or ALS or MS, or whatever), there’s the subtle inference that people who “lose” didn’t fight “hard enough.” People are artificially divided into “winners” – “survivors” being a common lexicon – or “losers.”

I have resented this way of talk since my grandfather died from cancer.  The facts are it was inoperable and found late.  If it was found earlier it was still inoperable.  He did not lose.  He didn’t not try.  And in all honesty since he died a month after it was found he probably should have skipped the chemo and radiation.  So if he had skipped it, it still wouldn’t be he didn’t try.  There was nothing to be done.  And cancer did not win.  It is simply a disease.

I have used the “fight” analogy not knowing what else to use.  After all, it is all around me.  Many fellow patients say they are fighting their disease.  But analogies can be harmful.  Consider these:  ”Although metaphors help patients understand their disease, battlefield analogies can be upsetting, say the researchers, who have published a study on doctor-patient communication in the Journal of Clinical Oncology. Case in point: Cyclist and six-time Tour de France winner Lance Armstrong switched oncologists after the first doctor he saw told him he would hit him so hard with chemotherapy he would virtually kill him.”

“I first realized the power of metaphors a few years ago when my Aunt Fran complained about an orthopedic surgeon she visited for her arthritic knee,” said Reisfield, who specializes in palliative care and pain management. “He compared my aunt to an old car and her knee to a part that had to be replaced. She was incensed by this comparison and refused to go back to him.”

“I once saw a videotape of a doctor giving bad news to a breast cancer patient,” Rubin said. “He said he could liken breast cancer to dogs. Some cancers are poodles and some are Rottweilers. He needed to figure out which kind she had. I watched the patient cringe and felt myself cringe, too.”

The article is dead on when it says: “Yet thinking of cancer in terms of war strikes some as masculine, power-based, paternalistic and violent, Reisfield said. And it suggests winning the war — or defeating the cancer — is only a matter of fighting hard enough, he added. It also forces patients to keep fighting so they don’t lose the battle, when opting out of treatment may be a better choice if little or no medical benefit is evident.”

Using the fight analogy is a disservice to patients and especially when patients use it themselves.  You are not a failure or a loser for, let’s say, wanting to take a break from treatment.  Yes, the reality is the only thing that works (if it works at all) are harsh prescription drugs.  But there are plenty of reasons why a patient may need a break from treatment.  It is certainly not our place to judge other patients.  In fact that is part of the problem.  Why are we judging others?  I read RA Guy’s blog from time to time and he writes about how people disapprove of his treatment plan.  Who are we to judge?  I have noticed patients afraid that other patients will view them as whining.  Or some patients go on the defensive immediately which leads me to believe they have been attacked for their words before.  Why are we so harsh on our own??

So what then if no more fighting analogies?  I guess the truth.  We want to feel like we have a say in our outcome when we do not.  We really are just sick with a disease that will do what it wants with us.  We have no control over if the meds will help us or not.  If we will end up needing surgery or not.  If we will end up with other organs affected or not.  It’s just a part of life, our life, and we must live it.

As patients we are supposed to support one another.  We also need to be careful to not put someone else down for a different experience than us.  Or reprimand someone who is tired and or doesn’t feel all that positive.  Not a single one of us asked for this.  We aren’t being punished.  It is what it is.  In the end it is all a matter of hope.  I know some of you get that hope from your faith.  Not all of us do.  I don’t see God’s hand at work.  It is perfectly ok that you do and I don’t.  Where am I going with this?  A challenge to our community: 1) I encourage our community to think outside the winner/loser box.  We are not fighting an opponent, but are living with a disease.  2) To be open to the fact that we do not all get our hope from the same source.  No need to imply that your source is the only source where hope can be found.  Hope can be found in many ways.

Hugs to all!

We are all in the gutter, but some of us are looking at the stars. ~Oscar Wilde

Hope is the dream of a soul awake. ~French Proverb

When things are bad, we take comfort in the thought that they could always be worse.  And when they are, we find hope in the thought that things are so bad they have to get better. ~Malcolm Forbes

Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out. ~Vaclav Havel