June 20th, 2015


Sometimes Dealing With Doctors Is As Bad As The Illness

There has been some discussion in Australia between patients and doctors that resonates with me as a patient in the U.S. with chronic illness. I've been having a particularly frustrating time in the past few years with many (though not all) of my doctors and HMOs. I wasn't even allowed into the chronic pain program at Kaiser because I rely on medication such as hydrocodone occasionally to help manage my pain. I cannot tolerate NSAIDS however much I yearn for them. Nor do I take any medication on a daily basis. I was told they could help me detox. But I do not have a physical dependency or addiction to my medication since I don't even take it more than twice a week. (Migraineurs are prone to rebound headache if we take pain meds more often than that. And rebound headache is like the tortures of the damned.) I save it for the worst migraines and take it to get some sleep.

If there is one request I could make of doctors everywhere, it's that they become comfortable saying "I don't know what's wrong. I'll keep trying to figure it out." Instead of deflecting their uncertainty and insecurity onto the patient, "Maybe you need to talk to a therapist." I heard things like that for 22 years while they couldn't figure out that I had gallbladder disease despite classic symptoms.

Here's a group of posts that explore some of the issues of the doctor patient relationship especially as it relates to chronic illness. And I am reminded of an open letter to chronically ill patients from a doctor years ago as I read these.


I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better. I thought that was a good idea so I asked for some recommendations and started reading.

I can tell you, it didn’t cheer me up but it was enlightening. It felt a bit like a refresher course “do’s and dont’s for doctors”. What I read was that, in the eyes of patients:

Doctors often don’t know how to deal with disabilities
Doctors sometimes blame patients for treatment failures
Some doctors find it hard to accept patients as experts
Doctors don’t always communicate well.


Apparently, twisting one’s pelvis means that one is simply not trying hard enough. I was actually scolded. Yep, for not getting better. A high earning pain specialist decided the best approach was blame. The same pain specialist that had taught me about how unpredictable the nervous system can be could not comprehend that I could actually be dealing with an additional injury.

Lots of shock and confusion.

He would not allow me to continue working with the pain management team that had been helping me so much (physiotherapists, occupational therapists, counsellors) because, you know, I was just crazy. I was so crazy that he thought it OK to blatantly lie about my program ever having included outpatient sessions. It was an odd thing, that lie, because not only had other people been present when the program was initially discussed, but I had already attended outpatient sessions.

As far as I know, it’s really difficult to attend things that don’t exist.

“You need to see a psychiatrist.”

I would receive no more help from him, or his team, unless I exclusively saw the psychiatrist.


My name is Carly Findlay. I have Ichthyosis form erythroderma - a severe skin condition that is genetic and to date, no cure. The doctors didnt expect me to live long - but at 30 years, I am still here! It affects my skin, my eyes, ears, temperature regulation and digestive system. I get itchy and am susceptible to infections. It is extremely painful most of the time I cannot describe the pain. I spend a lot of time at the hospital - in waiting rooms mostly - seeing dermatologists and other specialists, and receiving treatment on the ward when I get very sore. While it is medically challenging, the social challenges can be far more difficult...

Often when people see me, they ask me what's wrong with me. Whether there is a cure or an operation. Sometimes they state they couldn't handle looking the way I do.

They assume that my life must be much worse than theirs.

I have just handed in my thesis for my Masters of Communication at RMIT University. My thesis was on the way blogging helps those with a chronic illness form a sense of identity. One of the texts I studied in my research was Pride Against Prejudice by Jenny Morris. Jenny Morris writes about the experience of being different.

Jenny examines the way physical difference “gives non-disabled people the right to invade our privacy and make judgments about our lives”.

She outlines some of the assumptions and prejudices that society makes about those with disabilities and physical differences. These assumptions and prejudices that apply most to me include “That we crave to be normal and whole”, “that we are naïve and lead sheltered lives”, “that we constantly suffer and that any suffering is nasty”, that we can't ever really accept our condition, and if we appear to be leading a full and contented life, or are simply cheerful, we are 'just putting a good face on it'', and “that if we are particularly gifted, successful or attractive...our fate is infinitely more tragic than if we were none of these things”

Every day in the course of my work, I come across patients, doctors, nurses, and allied health professionals, who work tirelessly to transform the traditional doctor/patient paradigm – one in which doctors hold all the answers, and patients must comply with their medical expertise. A few months ago, David Gilbert, yet another passionate and outspoken patient advocate (yes, there are many!) took an analytical, evidence-based approach, using his research as a CLAHRC NW London fellow, to outline seven key benefits patients bring as partners in healthcare. It’s deeply depressing therefore this week to have the face the reality that for all the patient-centred care rhetoric that abounds, we are still a long way from recognizing that health expertise lies outside as much as inside medical circles. We can’t just talk about a commitment to patient centred care– we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient.

The question now is how do we start to bridge that divide in tangible and meaningful ways?

That last referred to a USA Today article by a Ph.D (not a doctor) railing against online patient reviews and giving the opinion that having a good interaction with a doctor was not a valid criterion for choosing a doctor, therefore patient ratings shouldn't matter. (I guess we should all opt for the cold, superior-acting doc with the best track record rather than someone we can actually communicate with. But how does he or she get that track record if they never listen to patients long enough to get sufficient information from them?)