Advising Patient Empowerment: Keep in Mind the Health Care Reality

By: Loolwa Khazzoom, Founder, Dancing with Pain

October 15th, 2009 • Patient AdvocacyPrint Print

It’s great that everyone is singing the patient empowerment song today. Yes we patients need to go do our thing and take responsibility for our health and all that jazz. Applause applause.

But for chrissakes, stop pretending we live in some Law-of-Attraction bubble where the only force in our lives is our own will. There are twenty million other factors going on that are way the fuck out of our control. So despite the passionate desire and absolute commitment a patient has for her own healing, she may not have the resources or physical stamina or medical knowledge or a host of other things to know where to even begin looking or what questions to even begin asking.

And this is why I get really fucking pissed when people who don’t truly know people in chronic pain, who don’t actually know our stories, start fishing around for “the real reason” why we have chronic pain. Here’s the real reason: Our health care system is fucked.

In the early days, I would wake up about every six months with a silent scream, sitting bolt upright in bed. My life was being drained from me, and I felt powerless to stop it. Everywhere I was supposed to turn, the only places I knew to turn, were failing me and humiliating me and further injuring me in the process. I – an educated, assertive, resourceful, determined, powerful young woman full of life and vitality – had no fucking idea where to get the help I needed. And neither did anyone around me.

To date myself, it all happened before the internet was accessible to the masses, so it wasn’t like I could go to Google and type in “chronic pain + healing” or the million variations thereof. Meanwhile, my life was falling apart, and each component of my life’s dissolution was feeding another:

Less physical ability ->less ability to work -> less financial resources -> less access to out-of-pocket health care -> less effective response to pain -> depression -> less energy -> less social life -> isolation -> more stress -> more pain…I was running  – er, hobbling — around like a mouse in a maze, positive that the exit was somewhere close, probably right under my nose, but absolutely unable to find it.

How dare anyone judge people fighting for their lives like that.

In my case, I just kept on keeping on, doing what I could, working my edge, getting more creative, more assertive, more inquisitive, more demanding. I started talking to anyone I could about what was going on — thinking that maybe someone would have the answer, someone I might not even expect to have it. I wrote down what worked, what didn’t, what might, and how I could access new possibilities.

In 2003, I devised a system to interview doctors, based on what I knew I needed and what I knew didn’t work with past doctors. Among my requirements for a new doctor was the interest in working with my alternative health care practitioners. Through various means, I came up with a list of seven doctors to interview.

I found one of those doctors indirectly, through talking with a friend. She’d had a great experience with a East/West medicine doctor in my area. He had been able to heal her quickly from a condition that had stumped the Western medicine doctors. While he was not covered by health insurance, my friend suggested that maybe he would know someone who was.

He did.

I felt she was the right doctor for a few reasons, not the least of which was that she actually had a different rate for an office visit and an initial consultation – ie, interview. Since my health insurance did not cover doctor interviews, I was paying $100/visit out of pocket. But with this doctor, I only had to pay $25. In addition, this doctor had a whole host of other positive attributes for which I was looking, and above and beyond that, I liked her energy. So I switched.

I was disappointed, however, in my first visit with her. Like many doctors before, she made an assumption about a heart condition I was having, without doing the footwork of getting an accurate diagnosis. So when I called to make another appointment a few weeks later, I was pleased that she was not there that day. I figured it was a great way to check out other doctors in the practice.

“Are you Loolwa Khazzoom, the author?” the substitute doctor said as she walked into the room. I knew right then I was switching doctors again. I didn’t know which of my writings this doctor had read, but I knew that from the moment she laid eyes on me, she was seeing more than a frustrated patient in a paper gown. She was seeing a whole human being.

As it turned out, she had just heard me on the local station of National Public Radio, where I’d been interviewed as part of my book tour. Her first introduction to me had been to me – an articulate, passionate, accomplished, dynamic, powerful, and funny woman.

This doctor proved to be the best I ever had up to that point. I can’t say how much of her compassion for and dedication to me had to do with the way she perceived me in particular, versus the way she just was with all her patients. I did, however, for the first time in my life since facing chronic pain, receive proper medical care. And lo and behold, I began to heal.

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