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gender & sexuality

Institutionalized sexism in medical practice

I have interstitial cystitis, a chronic pain condition, so I am well aware of the discriminatory practices of the medical profession. My disease primarily affects women, as do most chronic pain conditions. Yet, as this article corroborates, women have a harder time getting pain relief and getting diagnosed than men. Trust me, I know, bigotry is in the very fabric of all our social institutions. Women pay the price in suffering. Please read:
Women and Pain Control -- Do We Get The Short End of the Cadeuceus?

My answer to that question is yes, quite likely we do. If you peruse many support forums for those in chronic pain, or blogs created by females in chronic pain, my guess is that you will find personal experiences written with heart-breaking emotion almost everywhere you look. There are stories of doctors stating, "This isn't painful, you simply need to stop worrying about it." There are stories of women, crying in pain, being brought to the emergency room and being turned away, because they were simply "hysterical." There are stories of women being turned away from pain clinics because "there's nothing we can do for you," while the guy next to her in the waiting area goes right in for his scripts.

Even I have stories like this to tell. When my husband was hospitalized about a year ago for what turned out to be a semi-mild heart problem, he made the offhand comment "I kind of have a headache" to a nurse when asked how he was feeling. Almost immediately, someone was in the room, syringe in hand ... when we asked what it was, we were told, "Morphine." Morphine? For a headache??? We asked ourselves, "Whatever happened to Tylenol, the 'pain reliever hospitals use most,'" as the commercial went way back when.

When my husband woke up from his narcotic induced haze (yes, they gave him enough to kill a horse, thanks), we discussed our anger over the situation. You see, it was not anger at a case of over-medicating a small problem. It went deeper than that.

Months before, I had seen a cruel doctor who did not believe in pain control, and was taken off long-term narcotic therapy abruptly. Most of us realize that abruptly stopping narcotics leads to withdrawal symptoms that involve a severe worsening of pain, vomiting, diarrhea, intense stomach cramps, and in the worst cases, delirium and even seizures. Of course, I went into withdrawal, and my IC pain came back with a vengeance... at first, I thought I would try to wait it out, since I had appointments with a new urologist (known for his compassion) as well as a pain clinic a month from that date, but eventually, after I had not slept or eaten in four days, and I began to cycle deliriously through emotions, my husband literally carried me to the emergency room at the same hospital he was in when the Morphine Incident occurred.

Crying, and in the fetal position, I was taken back to a bed, but forced to wait hours before the doctors decided I probably really did have something wrong with me after what seemed like endless discussions in which both my husband and I attempted to explain that yes, interstitial cystitis is a real disease, and that it CAN cause "that much pain." When they finally decided to help, they sent me on my way with a prescription to be filled on the way home (for less medication than I'd been prescribed, no less). They did nothing to try to control my pain acutely in the ER; no pain shot, no pain pill in a little cup to swallow with another little cup of water.

And then several months later, the same hospital gives my husband several milligrams of morphine via IV because he had a headache? Neither of us could believe this. I felt angry, yes, but also devalued as a person... why was my pain not worth treating and his was? Was I not worth the effort? Was it because I was "just some hysterical woman" despite the fact that I am a scientist in the research department of this very same teaching hospital that, apparently, teaches gender bias along with its medicine?

My husband was just plain angry. He said, "How many times is this going to happen?"

At first, I found it strange that he would talk of the incident in the plural, but as he began to talk, I understood. He reminded me of all the times I'd talked about changes in my pain status at a doctor's appointment I went to alone, and nothing had changed despite my best efforts to be calm, prepared, and yes, maybe a little pushy... but then how, when he came to the next appointment with me and did the talking, people jumped and changes in my pain control regimen were made immediately. We, of course, wondered if it was simply the fact that someone was corroborating my story, but after a little research on the IC Network message boards, I realized that this too is likely because he is a male. Women who took husbands or boyfriends or brothers to appointments where pain was to be discussed fared better at least 95% of the time than those who took a female friend, mother, or sister. So, essentially, it wasn't just that another person was in the room - it was that a MALE PERSON was in the room.

Of course, I am not implying that all doctors or pain specialists do this - I have had two doctors who have been nothing but compassionate about pain control in my lifetime; one female and one male. However, I have noticed a preponderance of male doctors treating female patients like ants to be stepped on... my first urologist, a nice man in other ways, was unresponsive to complaints of pain and only took them seriously when Dear Husband came along with me. But, that isn't always the case, as my current pain management specialist, a woman, also responds better when I bring my husband, whether it's a transition between meds, a dosage change, or just a general question. Because of that, I do not think the issue can be explained away as simple relationships between the sexes.

To look into this further, one must first realize that most drug or treatment trials in the past have been performed on men only. It was previously thought that women were too "difficult" or "expensive" to include in studies because of their cyclic hormonal changes; however, in the last decade or so, because doctors have sometimes noted differences in response to approved drugs between men and women, a movement began at the NIH (National Institutes of Health) to finally include female subjects in research. President Clinton actually signed that into law during his presidency (see  http://www.ichelp.org/painissues/GenderAndChronicPain.html for more details).

The article above also discusses the fact that there are, in fact, genetic differences between how women and men perceive pain. It is interesting to note that even though studies have shown that women are actually more vocal and more descriptive about their pain, they are still undertreated. Further study indicates that emotionality over pain issues actually works against a patient, as my husband and I experienced when I was in tears in the emergency room. Therefore, it seems if women are either too vocal or not vocal enough, their pain goes untreated... and that means most women remain in pain, since it's pretty hard to be in that very narrow "in between" window about pain.

Interestingly, the article also points out that it has been shown that women deal with pain better than men do. Perhaps our doctors think we can handle pain, then? In my opinion, that's not the case. Instead, I tend to believe that most doctors don't consider that. Evidence shows that doctors are more afraid of addiction to prescription medications when dealing with women, despite the fact that we have been shown to be able to deal with pain and comply with its treatment better than men do!

Sadly, this even extends to women with cancer. Clinical studies have shown that being of a minority race or being female were predictors of inadequate pain control for cancer pain. In addition, similar studies show females are often denied adequate pain control after surgery.

It is unfortunate, too, because the majority of patients with diseases like IC and fibromyalgia are women, and that means a significant portion of these patients are in pain.

I count myself among the lucky; while my pain management doctor could use a kick in the pants occasionally, she does provide very good pain management, even if I do sometimes need to bring Dear Husband along. I find myself frustrated, though, at the number of posts I see daily on the IC support forums in which a woman is upset over lack of pain control and begs the community for answers about how to get it. I know that the pain of IC has been studied and equated to the pain of end-stage cancer, and that many IC patients report a quality of life score that is lower than those on dialysis for renal failure. There have been suicides each year in the IC community because women simply have given up - no one would take their pain seriously, and they felt that the only way to get relief was to end their lives.

What can we do to end this? I don't know, but again, I think education is part of the answer to this question as well. I am very glad to see the studies I've mentioned popping up - I think it is wonderful to see that researchers are finally taking a hard look at pain issues and the gender differences that affect them, and that hard data supports that women are indeed getting the short end of the stick when it comes to pain control.

More studies like this must be funded, and they must be well-publicized when the results are published. Both patients and doctors need to read these. For patients, especially females, it is important to know that what we perceive as a gender bias at the pain clinic really does exist to some degree. We are not crazy. For doctors, these studies shed light on their own attitudes towards gender and pain in general, and will hopefully realize that gender-specific attitudes about pain belong in the past.

I am also happy to report that many medical schools are now offering programs in pain management. These not only focus on the how-to's of pain management, which are important since many doctors avoid the issue because they "aren't experienced in that kind of care," but they also focus on the social aspects of pain care. These programs are teaching students that pain is the fifth vital sign, and that, while it cannot yet be measured, the patient must be believed. They are also teaching that less than one percent of those in chronic pain actually become true addicts, so prescribing pain medication when needed should not be as taboo as it is now.

However, I also think that we as patients have a responsibility here too, at least until things change. We need to be as educated about our conditions and about pain care as we can. We have to know how to work the system, as they say. Becoming an educated patient isn't an overnight thing - it requires a lot of reading and keeping up with the latest scientific discoveries and the latest medications for our diseases, learning to describe pain the way a doctor would, learning to control our emotions as much as possible and be rational when in the exam room, and learning things like Jen's #1 rule of pain management: Do not ask for a specific pain medication. This often labels you as a drug seeker... while it's not true, doctors often think, "Hmmm... this patient may be addicted to that drug, since the addicts that do come in here ask for specific drugs all the time."

Some good resources for becoming an educated patient can be found in books and on the web. "Earthling," an employee here at Revolution health, has written a blurb about "The Educated Patient," and I think it sums up what this means by chronicling his own journey to becoming an educated patient. It is a good place to start in your quest.

The next thing to do is to become an expert on your own disease. Using IC as an example, there are excellent books on the subject - my personal favorite is The Interstitial Cystitis Survival Guide by Robert Moldwin, MD, because it discusses all aspects of the disease, from diagnosis, to treatments, to coping mechanisms. Another excellent resource for ICers are the websites for the Interstitial Cystitis Network ( http://www.ic-network.com/) and the Interstitial Cystitis Association ( http://www.ichelp.org/) - the ICN has a particularly informative section called the "Patient Handbook" and it can be found at  http://www.ic-network.com/) and the Interstitial Cystitis Association ( http://www.ichelp.org/) - the ICN has a particularly informative section called the "Patient Handbook" and it can be found at  link to www.ic-network.com - you just type in interstitial cystitis, for example, and journal articles on that subject will pop up for you.

Now that you're educated in your disease, you must become educated about pain. That includes what it is, why it happens, and what to do about it. A great resource for the lay person is the book Overcoming Pain by Allan Platt, PA-C, Susan Platt, MD, and Cathy Hedrich, RPT (Hilton Publishing). It is written in clear, easy language for the general public, and discusses all of these issues as well as gender and racial bias in pain control and how to get past it.

Finally, we must draw on our own experiences. Unfortunately, if that means taking your husband with you to a particularly important appointment, well, so be it. Until things change, and I genuinely believe they will, you gotta do what you gotta do.