Recently I had to see a dental specialist to have a tooth repaired. As I sat in the waiting area filling out the forms – insurance numbers, contact information – I eventually came to the dreaded “medical history” form. On it, I was asked to list all of the medications I currently take, any diagnoses or conditions, and my history of hospitalizations. As a person with a psychiatric history, I needed to ponder how much information to disclose. Did I really want to disclose my psychiatric diagnosis? Did this oral surgeon really need to know that I had been in mental hospitals? Should I write down the psychiatric meds I take or just leave them off the form altogether?
The situation I am describing is familiar to all of us who have a psychiatric diagnosis. Without even knowing it, many of us have become adept at carefully calibrating how much information to share with other medical professionals about our psychiatric condition. Why? Because of the stigma and discrimination we so often encounter in medical settings, including emergency rooms, outpatient clinics and hospitals. Research literature suggests medical students believe people diagnosed with mental illness don’t recover, are violent and are “not easy to like”. Also “diagnostic overshadowing” is related to stigma and occurs not infrequently in medical settings. That means sometimes our real physical complaints get attributed to mental illness. Additionally, because of stigma we sometimes get lower quality or less comprehensive care.
Stigma in medical settings is real. It’s not all in our heads. How should we approach this situation? On the one extreme, we can omit information about our psychiatric history, but this can be risky. Doctors need to know all the medications we take, in order to provide safe and effective treatment. On the other extreme, we can openly confront stigma and educate the provider. However, this option runs the risk of alienating the provider and delaying the treatment we may need. Personally, I don't have a single rule that covers all situations. I calibrate the information I disclose based on the situation and what I feel the doctor needs to know about me. I'd be interested to hear how others handle situations like these.
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Unfortunately I feel the necessity to reveal all as the interactions caused by drugs to treat post cancer issues, and psychiatric medication, plus whatever else is prescribed can be a dangerous situation and something to avoid despite the stigma and attitudes that result. Needless to say the costs associated with the numerous medications are not just a huge financial burden.trom
I don't have one rule either. When I'm seeing a new provider, I often don't feel out the medical history form and wait until I meet with the provider. I need to get a sense of whether or not this is a provider whom I can work with and trust before divulging all that information.
I also have learned to ask to talk to doctors and explain that I expect honesty and candidness. I had a doctor who decided to drop me as a patient through a letter and never told me that he was having difficulty with me directly. So now I tell new providers, that if there's something that I'm doing that's not working for them, they need to tell me up front and I don't want it in a letter. (This is generally with primary care providers). I also let docs know that I'm not interested in being lectured to--that I want to be part of the decision.
Another sometimes less helpful strategy is avoiding the medical provider. This sometimes has other costs that impact my health--but for me it's not worth the extra grief and stress.
When I've had to see other doctors when my primary care doc was not available, and have been treated poorly, I let my primary care doc know that I felt disrespected and ill-treated. I also then make it a rule to not see that doctor again--no matter the circumstance. That is easy for me to do because I live in an urban area with lots of docs. For people who live in areas where there are few or no choice in docs, this is not an option.
I also have started asking my primary doc to take on some of these issues with me when they refer me to someone. I want them to think about who they refer me to...I want them to think about the issues that I am sensitive to and then think about their colleagues and would be a best fit. Recently, I was diagnosed with severe arthritis in my knee. I explained to my doc that I wasn't interested in seeing an orthopedist because I didn't want to be lectured about my weight. I know that I'm overweight and I don't need a lecture about it. If it was an easy thing to change, I would have changed it a long time ago. When she suggested that she might also refer me to a rhuematoidologist, I told her that I wanted her to have the conversation about what I wanted in a doc.
In my work with people who are recovering from mental illness it seems to unfortunately becoming more frequent that if they have physical complaints the physician writes it off as a symptom of the illness and they're physical ailments go untreated. I have seen undiagnosed pneumonia, the onset of diabetes, fractured hips and even end stage lung cancer go unnoticed at the inpatient hospital level of care. I am reluctant to disclose the mental illness in my family on the medical history for fear the doctor may treat me differently because a family member is recovering.
I've had a few stigma discussions and I have a different view than most it seems. I think stigma is something you have to show up for. You have to say "yes I am that person, I identify as the person being stigmatized." I say just don't identify as the receiver of the stigmatizing thoughts. I think we should really question our assumptions about stigma and make sure we are not contributing to it.
I align myself with Jim Whipple's comments, and I embrace his ideas of "showing up for stigma", and saying "Yes, I am that person ...." I have experienced psychiatric problems since I was a very young child. Now, at age 60, those very problems have been part of what made me who I am. I am becoming clearer and clearer about disclosing information, and for me, I realize that doing that BRINGS LIGHT and a sense of coming out of the mental illness closet. I can teach many people what it has been like for me, and often that can lead to more discussion, more of a sense of "this is something that this is something human". I am who I am, and I celebrate that. ~~~When I was in my 20's and 30's, I had years of self-injury. Nowadays, if I roll up my sleeves, the scars are right there. If someone wants to know about them, I am ready to teach them -- teach them what it is to be a Survivor!
More and more, I reject shame about who I am. And gratefully, gratefully.................
Interesting points of view here. I appreciate the discussion. I too have made it a quest to openly challenge stigma, prejudice and discrimination based on stereotypes of mental illness. But honestly, when I am trying to get quality medical care, I don't bring my advocacy efforts to that setting. In other words, if I'm sick or need a procedure, I'm just going to negotiate the situation so I get the care I need. Later, when I'm back on my feet, I'll fight the good fight and show up to confront stigma. Sometimes, when I'm not well or have to have a procedure, I just don't have the energy to fight the good fight. I just want to get the treatment I deserve!
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