For those of us with an Environmental Illness, any relationship with the medical community is complicated, fraught even. We have to deal with doctors frequently because we have frequent medical needs, usually needs that require help from diverse specialists. Coordinating those specialists is difficult; they may give conflicting advice and have little interest in working with our other physicians. We usually are dealing with chronic pain which can make us emotional during appointments. And some of our symptoms are difficult, if not impossible, to document. Lastly, there has not been enough research done on our illnesses to provide a medical consensus on etiology or mechanism. If all of this seems challenging from the patient’s point of view – flip that last paragraph around and read it from a doctor’s point of view. We are also incredibly challenging to have as patients.
In the beginning, I had more doctors than I care to remember tell me to calm down, that my symptoms were caused by stress. The term somatoform disorder is the cornerstone of most of my nightmares, thanks Medical Community. I came to them in pain, confused and terrified, and their dismissal wounded me even more. It has been years since I have suffered through that kind of exchange. The medical establishment has not changed – I have. I research any potential doctor as thoroughly as I can before I walk into their office, looking for signs they might be the kind of doctor that enjoys a challenge. Also, I walk into that office looking for something specific, not a life line.
The last time I had a bad doctor’s appointment was about 7 years ago. I was in my third meeting with a respected and established physician who focused on prevention and nutrition but we were not clicking at all. In a moment of pure frustration I broke my normal Southern Lady Manners and asked “Do you have any tone other than combative or condescending?” He replied “If you would just do what I tell you to without asking questions then I might have another tone.” I left immediately and never returned.
This brings me to one of my main frustrations with the medical community – gender bias. I know, with complete confidence, that my demeanor in that office was practical and receptive. I can only assume his reaction was based on an idea of how my gender should act. Maybe not, maybe he treated his male patients that way too. But in my mind it was a repeat of all those times that a confident little girl is called bossy. It certainly was a repeat of the countless times I struggled to find respect within the male dominated field of research science that I had chosen as my career.
Recently I read In the Kingdom of the Sick by Laurie Edwards and it shed some light on this issue for me. I already reviewed the book in my blog but saved these few quotes on bias within the patient-doctor relationship to share with you now.
Edwards reviews a groundbreaking report from the Institute of Medicine and Society for Women’s Health Research that explores the differences between men and women with regards to health issues. Their findings show there is a true difference in ”disease susceptibilty, onset, and severity or response to therapy”. Women experience more chronic pain but twice as many men die from cardiovascular disease. Females are more prone to depression and anxiety disorder while men are more prone to antisocial disorders and Tourette’s. Men metabolize caffeine more quickly, women metabolize certain antidepressants more rapidly. Women’s wider range of hormone levels put us at greater risk for certain side effects at certain times. None of this is really surprising to me but it is a solid reminder that women are medically differently than men. I want to be diagnosed and treated by a doctor who recognizes these differences. But I want to be heard and valued by a doctor regardless of my gender.
We all know the damage that our culture has done by letting the phrase “the weaker sex” have any validity. I trust that with every year there are fewer people who maintain even a small bit of that notion somewhere in their tiny minds. But they are still out there and my only solution to dealing with them is pure avoidance. We can’t assume doctors will harbor these historical prejudices; that is simplistic and increasingly untrue. We can however, admit there is a very real, very significant language difference. As Edwards writes, “some of the reason women feel dismissed or undervalued when they seek treatment for pain isn’t because they are inherently too emotional or too prone to complaining but that they are speaking another language”. Women are “more likely to describe their pain within the context of their relationships and social networks” while men use “simple concrete terms” like where, when, and a scale for pain. It would be great if all physicians wanted both kinds of information, because I think both are useful data in diagnosing and treating patients. But I can make sure that I speak both languages while presenting my situation in hopes that my physician receives a fuller picture.
There is more than a language difference between patient and physician, especially as they consider pain. “Physicians are interested in analyzing pain, whereas patients, many of whom have lived with pain for years, are less focused on the analysis of pain itself and more concerned with alternatives to their current pain management. When you consider the distinction between disease (that which can be quantified by tests and results) and illness (the subjective experience of living with a condition), this makes sense.” Obviously, I think Laurie Edwards has some wonderful insights that are best articulated in her own words. I can only add an Amen to that last one.
I can summarize it all though; the medical community needs to not only acknowledge the differences in gender but apply that in research, treatment, and medical training. In the meantime, we as patients have to do our part and advocate for ourselves.
So keep a health journal and bring it to all appointments. A firm grasp of symptom onset, exposure, drug and supplemental dosage will obviously help you know your own health issues but also convey a sense of seriousness and confidence to the doctor. Be clear with yourself and then with the doctor on what you want to get out of your time together. If you want a physician who is a partner in your healing journey then be ready to be the other part of that partnership. They know medicine but you know your own body and the days of blindly following doctor recommendations, as wonderfully simple and comforting as that sounds, are long gone.