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Health in Our Community: An Acupuncturist’s Perspective

“She who hides her symptoms, cannot expect to get well.” Some years ago, I saw this quote on a wall at an AIDS/HIV testing facility.  I remember it came from some tribe in Africa, and the truth of it chilled me to the bone.  I wrote it down and never forgot it.
 
These days, as my peers and I are in our 40’s, 50’s and beyond, I am increasingly surrounded by friends who remind me of this quote, and of the importance of paying attention to the messages our bodies send us. These particular friends are in the habit of ignoring these messages, until they become life threatening, or hinder their lifestyle and/or ability to work.  All of them are women, but these messages are equally important to men. It is a myth that women are more “in tune” with their bodies.
 
Perhaps the notion of self-dependent machismo in the lesbian community gets in the way of so many of us seeking medical help for our symptoms – Goddess forbid that we might feel vulnerable, and have to ask for help with something going wrong inside us which we cannot see or identify.  It is positively frightening, isolating, and lonely.
 
One of my friends has Hepatitis C.  Even though she knows that liver damage and liver cancer are high outcomes of this disease, she refuses to stop drinking.  She drinks a lot of beer, which is hard even on a healthy liver.  Recently, she was hospitalized for abscesses in her lung, and was lucky that cancer was ruled out.  The cause of the abscesses have not yet been determined, but she has since cut her smoking in half. 
 
It is well known that smoking increases the risk of all kinds of cancer, but perhaps less well known is that having a chronic illness, like Hepatitis C, increases the likelihood of developing other serious diseases.  Once or twice a year, my friend has some new acute symptoms appear, and I get to hear about them when they pop up, but I never hear the diagnosis, or if she is following recommended medical treatment.  She does not like to talk about it.
 
Another friend has been experiencing constant nausea and dizziness for several months.  Diabetes runs in her family, and because she knows this, she has been afraid to be tested.  To her credit, she does not have a high carb diet, but to her detriment, she does drink lots of coffee and does not eat regularly – factors that can make anyone dizzy and nauseous.  She also works too much and spends little time on herself.  While I am relieved to hear she will go for medical tests in a couple of weeks, I can’t help but wonder, Why did she wait so long?
 
I know too many women who have been diagnosed with advanced cancers of the breast, cervix and uterus.  All of them ignored symptoms that were present for a long time before their diagnosis.  Things like lumps, bumps and pain are definite indications that something is wrong.  Yet each of them delayed exams and diagnostic procedures until they were past the point of healing. 
 
All of them died.
 
I also know there are individuals in our community who refuse to be tested for AIDS/HIV, and others who know they have tested positive and do not engage in safe sex practices, or reveal their positive status to their sex partners.
 
“She who hides her symptoms, cannot expect to get well.”
 
So while thinking about my friends and community, I am wondering today what this trend of ignoring and hiding symptoms means.  What does it mean to the individuals who have these symptoms, and what does it mean to our community at large?  What is the impact, what is the toll?  And what is it doing to us, individually and collectively?
 
First, I want to explore where it comes from, and why.
 
As a woman, I have personally experienced what I call medical sexual discrimination.  It is a known fact that there is a medical bias that defines heterosexual men’s health experiences as the norm. The discrimination that women face in medical facilities is a direct result of this. 
 
It was not long ago that women were routinely sedated, institutionalized, and treated with electro-shock and lobotomies for emotional symptoms diagnosed as hysteria.  This diagnosis is exclusive to women, for indeed, the word “hysteria” derives from a Greek word for uterus.
 
Hysteria was thought to be due to a derangement disorder in the uterus, yet treatment was always aimed at the brain.  Medical treatment of hysteria was grossly misunderstood, misnamed, and itself deranged, more closely resembling “medical” torture procedures perpetrated on victims of backward regimes, than any methodology that might rightfully induce healing.
 
In the GLBT community, we have a parallel history of many lesbian women who were institutionalized, and received electro-shock and lobotomies.  While this did not cure them of their lesbianism (the goal), it is clear that the medical community viewed lesbianism similarly to the way it viewed hysteria.  Better, in the medical view, that we should be zombies, than be fully functioning loving beings, according to our true nature.
 
Only recently in history did the medical community reverse its previously long-held opinion that homosexuality is a disease.  In addition, while medical acceptance of transgendered people is growing, medical management of their transitioning process is similar to the way doctors think they need to “manage” pregnancies.  While I do not know about the in-depth details involved in transitioning, the perceived “need” for medical management of every aspect of it is suspicious to me.  In fact, more and more, it seems the medical establishment wants to “manage” every aspect of our lives.  This is a related issue, but not the one I am addressing here.
 
In returning to these facts, there is certainly ample evidence of medical mistreatment of many of our GLBT ancestors.  It is enough to make anyone fearful of visiting a doctor and it is certainly enough to squelch the average GLBT persons’ candid disclosure about the big picture of their life to their doctor.
 
This appears to make good intuitive sense, protecting ourselves against potential medical prejudice and bias.  We may think we are protecting ourselves from being dismissed, judged, poorly understood, not taken seriously, ignored, and even mistreated.  However, if we keep silent about the symptoms we do have, we cannot ever expect or hope to get well.  It is, unfortunately, more likely that our symptoms will progress into something more serious and more difficult to resolve.
 
In my last article, I wrote about the soul sickness that our community is plagued with, as a by-product of living with constant, enduring oppression and discrimination.  I believe our secrecy about our health issues is an extension of this soul sickness, and in some cases, may even be a manifestation of internalized homophobia.  It is a vicious cycle, where oppression and discrimination cause us to fear for our lives, and because there is real reason to believe we may not receive proper and fair medical treatment, we avoid it – and our symptoms. In doing so, we also miss the opportunity to get well.
 
As a health professional, I see there are several issues involved in resolving this dilemma. 
 
First, each of us is personally responsible for maintaining our health and well-being.  An extension of this, is that we are also responsible for the health of our community – if we have something that is contagious, it is our responsibility to know what we have, and take appropriate measures to protect others from it.
 
There are other, less direct ways we impact our communities by failing to maintain our health. More ill people means that there are less people well enough to build our community, engage in political actions and care for each other.  It also means a bigger drain on our community’s resources, increased sadness and the potential loss of our friends and loved ones.  Caring for our own well-being invigorates the health and welfare of the GLBT community as a whole.
 
Second, there has been a movement in our community for years to educate the medical profession about our needs and us.  It is not a big movement, but it is making headway.  Policies and definitions of illness with regard to GLBT individuals are improving greatly and there are increasing numbers of medical professionals who can rightly call themselves GLBT friendly; however, there are still many doctors whose hearts and minds need to be educated.  The bulk of the work at this point lies with individual practitioners and specific medical practices in conservative communities, and not with the medical establishment at large.
 
Whenever one of us encounters medical discrimination, we need to make it known in our communities.  It will help the rest of us avoid poor care, and could be useful data for potential judicial action. Yes, suing a doctor can result in their licenses being revoked, but the real gain is the potential for improving the health of our community members, as we weed out caregivers who treat us inappropriately.
 
Many GLBT communities publish lists of health professionals who advertise themselves as welcoming GLBT patients; these resources are valuable assets for building the health of our communities.  When I was a new acupuncturist several years ago, I participated in several community health care conversations.  I wanted to hear, from a broad spectrum of our community, what I could do to make my practice feel more welcoming. The answer was simple: inclusion.  Include GLBT individuals on paper, in writing and on forms.  That is where we start.
 
How many forms have we all filled out, medical and non-medical, on which our GLBT status was invisible?  Have you ever seen a health history form that asked if you were intersexed or transgendered, and if yes, whether you were taking hormones or had surgery?  Has any health professional ever given you a form that asked your sexual orientation, and whether you had multiple sexual partners?  Have you ever filled out a form that left a blank space for you to describe yourself?
 
Unfortunately, most of the forms we see only give us a choice of two boxes to check: male or female.  This is not enough for us.  We need more boxes.  We need more blank lines.  We need more options, because we are a community that consists of a great diversity of people.  Options empower us, give voice to our experiences, and make us visible.  Our lives could depend upon it because sometimes our health issues are directly related to a box not available for us to check.
 
In my own practice, I witness many poignant responses to the portion of my health history form that asks these questions.  The most common response is deep gratitude, often accompanied by tears or more rarely a smile, and it results in patients sharing a portion of who they are and how this relates to the very health issue that brings them to my office. They know I see them. 
 
They know they can say anything to me.  They sit a little straighter and they are visibly more relaxed.  No longer needing to be masked, their faces soften.  They feel safe.  When we no longer need to hide our symptoms (which are an extension of ourselves), we can expect, and have hope, to get well.
 
In this new year, may we be fortunate to receive the gifts of safety, respect, and healing for our community and ourselves.