Challenging the Theory of the “Secondary Gain” of Chronic Pain and Illness

By: Loolwa Khazzoom, Founder, Dancing with Pain

March 11th, 2010 • Patient AdvocacyPrint Print

In the past 24 hours or so, I have had two conversations where someone has talked about the “secondary gain” of chronic pain. As in, when pain is chronic, that’s because people enjoy what they are receiving from being in pain – whether extra attention or not having to work or whatever.

Oh. My. Gawd. It is leap-across-table-and-throttle-person-talking time. That shit makes me see red.

Look, I’m not going to claim to be a know-it-all and say there is absolutely nobody out there who is pumped to have a get-out-of-jail-free card because of pain. All I can say is that all the people in my life with chronic pain (and other forms of chronic illness) have done everything short of chopping off a limb to get out of pain.

We’ve had to deal with a medical system that was apathetic at best and antagonistic at worst, while our lives have come crashing to the ground before us. That’s torture enough as it is. To then add insult to injury and say we’re unconsciously (cheap shot – anyone can say anything is unconscious) fucking up our lives to get fifteen minutes of attention with pudgy, arrogant, wrinkly-faced doctors is just too much!

Following these conversations, I had a conversation with John Garrett — co-founder and co-director of For Grace, a nonprofit organization fighting gender disparity in treating pain. I asked him about his take on the matter. He said stuff so right-on, I regretted not having my recorder running.

He was talking witch hunts, lobotomies of “hysterical” women, burning at the stake of epileptic patients, and just the general dusty old mindset that led to all kinds of mayhem in years gone by. “Well what about people who say they were holding onto their pain, that they were getting secondary gains?” I asked. “That is their belief system,” he responded, “like believing in Jesus. There are people who believe that they are suffering because of past life karma.”

I remember going to a doctor because something was wrong with my ear. Of course, I’d been to her a number of times, because I have a chronic health condition. So when I came to her about my ear, she said, “I think you enjoy going to the doctor too much.” Um, well, actually, doctor visits are the bane of my existence.

Fortunately, I was by then strong enough and enough of a skilled self-advocate that I got a referral to an ENT doctor. Guess what? Turns out I had an ear infection. What if I had deferred to this doctor, or because of her attitude, been to afraid to go to a doctor at all, and the infection had spread?

That is the thing that doctors have to remember: When you play pop-psychologist, you not only might obfuscate the issue that needs to be treated, but you may psychologically traumatize us and make us afraid to seek help when we need treatment. In other words, you may facilitate a life-threatening situation for us.

I remember once I fell down a flight of stairs, flying over half the staircase and landing on my lower back. Despite being in horrible pain, I screamed hysterically when the nice man who picked me up said he would take me to the doctor.

I had by then been so traumatized by doctor attitudes, I just did not want to deal with another doctor telling me that pain was my fault, my attitude, my karma, my bad luck, or whatever. I preferred to suffer silently and with dignity than get treatment from someone who would invalidate or humiliate me yet again.

Anyhow, I have to get to sleep, but I plan on writing an article about all this stuff, and getting everyone’s point of view. Because I think this is a central issue that needs to be discussed publicly, between and among doctors and patients.


Cynthia Toussaint March 11th, 2010

WAY TO GOOOOO, Loolwa!!!

Of all the bizarre, non-sensicle comments I heard from doctors during my thirteen years without a diagnosis – it was… “You’re enjoying the secondary gain you’re receiving from your attentive partner, John” that I heard the MOST!

How could I fight back??  It wasn’t logical.  If I wanted to turn John on, believe me, I would have done better in a tu-tu, NOT a wheelchair… !!

John and I saw ”Shutter Island” over the weekend, and one of it’s core themes was that once you’ve been labeled a “nut”, it’s virtually impossible to get out from under that in a clinical setting.  And we’re at our most vulnerable… We’re SICK, IN PAIN and NEED RELIEF.  In so many ways, that puts us behind the eight ball!

These doctors abuses stain our psyches so profoundly, we never fully recover.  Shame on them!  But as you know, Loolwa, things are changing… We’re getting educated and empowered (especially we women in pain!)  “We’re mad as Hell and we’re NOT going to take it anymore.”    

Thank you for ALL the GREAT work you do to bring the real issue of pain to the masses.  And thank you, in advance, for your upcoming article.  Yay! :-)

Love and Grace,

Diana Lee March 23rd, 2010

Paula Kamen writes about this in All In My Head. I’m sure there are a very few, highly disturbed people for whom this holds true, but to act like it’s at all common is so incredibly insulting.

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