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WC77 – Owner’s Manual

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Just Say Hello
Feeling Welcome as a Health Concept
By Jeff Huyett

Many of us live in a state of dis-ease. This is not to say that we have an illness that eats away at our body. But we often exist with feelings of nervousness, worry, and just not feeling comfortable in our surroundings. The focus of these columns has been the exploration of the concepts of health. I like to challenge us to think outside the dominant paradigm of our capitalist, sickness treatment model of health care. When we view wellness as a dynamic, multi-faceted state toward which we strive, we must attend to our selves and also to the world outside ourselves with which we interact each day. We have all had the feeling of “not belonging” somewhere. How do these feelings impact our health, especially when they are a recurring sensation?

Recently I visited friends in Puerto Rico. We spent lots of time walking around and going out to eat. During the course of our excursions, I noticed that most of the other Puerto Ricans would nod or say “hola” to my friends. When I mentioned this, one friend said, “Isn’t it great! When I lived on the mainland, I missed that most. People here, all over the island, greet me. I don’t get that anywhere else in the US.” It reminded me of when I moved from a moderate-sized city in Missouri to rural Kansas. When my family would drive down a country road or small highway, people would lift a finger off the steering wheel, wave or nod. At first, we were tickled. But then we realized that this was a great way of making us feel comfortable in this place. It said, “Hi, I see you, I’m here with you, have a good day.” It is a ritual that I see expressed in country Kansas still today.

As queer people, we may sense feeling “out-of-place” over and over each day. There are seldom times when strangers nod or wave welcome to our big Gay self. Naturally, we don’t want to feel this dis-ease so we try to adapt. We may just avoid places or situations in which we don’t feel welcome. We may alter how we act or look or even lead a dual existence. In our “Gay places” we are one way, in “straight places” we are different. What work it is to keep this up! That is where coming out is a lifetime experience. We try to find places of comfort and ease. Often, it is about deciding not to really care about how people perceive or react to us. We can change how we respond and react. We try to control our own internal processes as a way to feel comfortable. But again, so much work!

Some of us don’t adapt so well. We get stuck in culturally imposed values and often turn them in on ourselves in hurtful ways. We begin to develop maladaptive ways to feel comfortable. It can happen on all realms of our being. We may drink or use drugs, including prescribed versions. Our sex acts may express themselves in ways that respond to our homophobic culture. Instead of acting on our desires in public, like straight people can, we may keep our sex in dark places out of any view of others. We may build muscles to appear more strong and manly—more “straight.” These acts of hiding may fuel our shame and guilt; compounding our dis-ease. Sometimes just “keeping up appearances” is plain exhausting.

Workplaces are another place that queer people can face daily challenges of feeling unwelcome. We all have the experience of near-mandatory participation in wedding or baby showers. We endure talk about fiancés, boyfriends or girlfriends, bridezilla experiences, often without being able to share in the same way. Sometimes, though, we should just share. In “butch” work environments we might have daily fear of disclosure of our Gayness and the impact on our colleagues. We can even fear for our safety.

As a nurse, I’m keen to the impact of these issues on one’s health. It can present itself in so many ways. So I assess queer patients for maladaptive behaviors. Identifying these types of health patterns gives information about the work to become healthy. Typically, there aren’t a lot of physical disease states that occur specifically related to our Gay sex. But our health is impacted by homophobia or transphobia and potential maladaptive behaviors develop.

What is your comfort zone about being Lesbian, Gay, bisexual or transgender? How much work do you put into “passing” in the greater world? How do you get support around being LGBT? Who knows? How is your family?

LGBT health and political activists are aware of the impact of homophobia on an individual’s health. The last three decades we’ve witnessed their work to make our society more civil and welcoming to queer folk. Mainstream culture has responded to this activism in positive ways that lets us be Gay in more places. Clearly, there is plenty of work yet to be done. Some of this happens on grander, policy and legal levels. But much of it happens in our individual relationships with the non-Gay people around us. When we are comfortable and authentic with ourselves then we can share that with the majority straight public.

This is just an excerpt from this issue of White Crane.   We are a reader-supported journal and need you to subscribe to keep this conversation going.  So to read more from this wonderful issue SUBSCRIBE to White Crane. Thanks!

Owner’s Manual is a regular feature of White Crane. Jeff Huyett is a nurse practitioner in NYC. His clinical work has primarily been in Queer health with a focus on HIV, rectal and transgender care. He is the Radical Faerie Daisy Shaver and is involved with the development of Faerie Camp Destiny Radical Sanctuary in Vermont and can be reached at JeffANP@aol.com

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WC76 – Review of Fenway Guide

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Rvu_fenwaylgbthealthFenway Guide to Lesbian, Gay, Bisexual,
and Transgender Health American College of Physicians
ISBN-10: 193051395X
544 pages $54.95
Reviewed by Jeff Huyett, NP

A colleague asked if I would talk with a friend, also a nurse, about her college-age son who is “just out.” “Would you just talk with her about how to keep safe, which vaccinations to get and all that? Should he get an anal pap smear?” Working in a college environment in New York City, I play the role of homo-expert since I’m an “out, Queer nurse” who is also proficient in LGBTQQ health concerns. (I add QQ to cover “Queer and questioning,” too, as many folks will never fit into a neat and tidy box of sexual identification.) I take this seriously because formal education about sexual minority “health” is missing in most nursing and medical curricula. Mental health programs tend to lead in teaching professionals about particular LGBT health issues.

Mother’s fears about her son’s coming out are about his medical safety. As a health issue, sexually-transmitted disease risks and prevention are the focus of mainstream education about LGBT patients. So it’s typical she would see these as primary concerns for her son’s health. But, really, risk of diseases specific to LGBT sex are easy to obviate with measures like protected sex and preventive vaccines. Our medically modeled “healthcare system” focuses on diseases, though, not health. So, many health concerns of an LGBT patient will not be met in our current health care system.

I encouraged her to focus on the social and emotional issues her son will be faced with and not just the sex/safety. She knows that he is aging into a world that is still pretty hostile to Queers. She knows that her son will experience hateful conversations, slurs, taunting, and possible physical violence just for being Gay. His experiences will shape a worldview that will inform him and affect his health throughout life.

Or, maybe she doesn’t know this. That’s why the Fenway Guide to Lesbian, Gay, Bisexual, and Transgender Health is essential for anyone practicing healthcare. I say ‘anyone’ because every healthcare provider is likely to take care of someone who is not heterosexual at some point in their career.

This scholarly text takes a holistic view of the term “health” in the title. “Health” affected by self-concept, the people around you, the place you live, and the air you breathe. The reader learns about LGBT people, history, culture, sexual minority phobias, politics and the effects these have on individual health and well-being. Much of the information about living in environments of oppression, repression and stigma will be fresh and thought-provoking for the reader.

I write this review with great pleasure and respect for the Fenway Community Health Center in Boston and all the people who have been associated with it. Full disclosure: I practiced there for six years, during a time of expansion from a basement clinic to large, multi-service health center in a state-of-the-art facility. It all happened as AIDS raged around us. Fenway endures and advances the LGBT health movement for all of us, not just Boston. Those times and this “model” of care permeate my own caregiving, teaching, research, and political activism.

Like the few other urban LGBT health services, Fenway came into being because men having Gay sex didn’t have a comfortable place to get checked and treated for sexually transmitted infections. Most communities forming post-Stonewall realized that “out” people had difficulty finding any kind of health care that was welcoming. The emergence of HIV further compounded the deficiencies of a mainstream system to care for sexual minorities. The fact that Fenway is expanding again exemplifies that specific agencies are still needed for LGBT health. The mainstream health care system still doesn’t get it. I advise corporate health executives, managers, and industry leaders: read this book. You are TOTALLY missing our market niche when it comes to LGBT health care.

For most clinicians, the Fenway Guide will fill in virtually all the information gaps about LGBT health. The style is scholarly, with footnoting and referencing. It reads like a textbook for a really interesting class. Each chapter reviews current scientific literature and synthesizes the findings into cogent practice recommendations for medical, nursing and mental health clinicians. Authors provide community and professional organizations information, websites, and resources. Sample intake forms, patient handouts, and health proxy forms are provided in the appendix for reader use in the clinical setting. Scientific literature and clinical recommendations will help clinicians to shape programs, staff offices, and provide care that is evidence-based. There are facts, figures, statistics and charts to highlight areas of strengths and deficiencies in programs. The 544-page text is a tome, but I cannot find information to edit, because, frankly, this is a primer, a beginner course. It is Queer health essentials.

The authors are physicians, social workers, psychologists, therapists, public health, health education professionals, lawyers and a physician’s assistant. These LGBT health experts practice in a variety of settings around the country, but most are from Boston. Some are in Gay-identified health service organizations similar to Fenway. Others are “out” and working in universities, hospitals, government agencies and grassroots organizations. Most of the authors are involved in ground-breaking research and community development. They acknowledge the extreme lack of population-based evidence of LGBT-particular health needs to guide us scientifically. They reinforce the clinician’s need to practice the “art of medicine” as stated in the preface by the editors. The term “art of healing” would have been more inclusive and better reflect the wide array of disciplines represented by the authors involved in this ground-breaking book.

This brings up my biggest criticism: there is a lack of nurse authors in the contributor list, though nurses are mentioned in the reading. This glaring omission demonstrates how nursing is reflected, or not, in the medical community, especially on the East Coast. Nurses have had great impact in the development of a wide array of LGBT services across the country.

Most authors use case studies to illustrate particular health topics. Many clinicians will be shocked when reading stories of coming out, abandonment, violence, and flat-out rejection by parents, family, friends and health care providers. Clinicians will learn how to better interpret the effects of oppression and stigma on individual health. This learning can readily be transposed to any care provided trans-culturally to assess the health affects of minority status. Effective history taking is reviewed in detail. Concrete examples are given for language and question formation to improve patient encounters, engender trust, and enhance the patient-provider relationship. The tone is matter-of-fact when it comes to discussing drug use, fetishes, and sexual behaviors. Especially important, the book reviews the need for sensitivity development in non-clinical staff as well as providing a safe, welcoming office environment for LGBT patients. Suggestions include LGBT representation in artwork, education materials, forms and questionnaires.

Families are explored from chosen families, bearing and raising children, Queer kids in straight families, and the notion that American families are just plain changing. LGBT folks are well aware of the importance of our close-knit circle of friends or chosen family. Fenway Guide carefully illustrates how society and laws dishonor these families. It teaches the clinician how to explore this realm with a patient to provide care to all who are family. Clinicians can use draft health proxy and living will forms to legally document the patient’s wishes in their medical record. The paradox is that America professes “family” as a core value, and yet we dismiss so much of what family is or can be.

Bearing and raising children happens in a variety of ways for parents in LGBT communities. The complexities of our couplings, alternative insemination, and the realities of raising children in same-sex-parent families is taught with census data, clinical research, and case studies. Like so much of this book, the discussions are full of examples from clinical experiences. I found this imparted a human-ness to the repeated statistics and study regurgitation. From a learner’s standpoint, I found this a good way to acculturate clinicians to the realities of Queer people.

Readings about transgender health are new and insightful. The reader will have a better understanding of the psychological, emotional, and cultural underpinnings of being transgender. This text does not outline methods of cross-gender hormone therapy but refers the reader to other resources. Given the lack of evidence-based research in cross-gender hormone therapy, the editors avoid recommendations about pharmacological measures. This reflects the reluctance of agencies to incur liability for recommendations in light of a lack of research. There is ample overview of hormone management and side effects monitoring as well as methods of surgical interventions for feminization and masculinization.

The Guide discusses physical, emotional, and familial experiences of people with disorders of sexual development (DSD) or intersex patients. This helpful chapter guides the family and clinician in the difficult decision making when it comes to treatment of infants with hormone therapy when there is ambiguous genital formation.

Evidence and recommendations for screening, treating and preventing sexually-transmitted infections are well provided. The specifics of HIV care are abbreviated, given the constant emergence of new studies. The reader is referred to current scientific guidelines and literature regarding HIV treatment specifics.

When a clinician wants to initiate practice changes in a health care environment, they must present documented need and proven methods of improvement. Getting clinicians to perform new behaviors or interview techniques is typically met with groans of “I’m already so busy. How will I have time to ask that or do this?” The Guide recognizes the over-worked, stressful environment that is health care today. Feasible suggestions are made for practice improvement, with average times given for elements of an interview or intervention. This allows the clinician to see how to integrate practice changes into the “ten-minute office visit.” There is ample discussion about the LGBT provider, navigation of coming out in the system, staying out, and helping colleagues with the coming-out process. The Guide is not simplistic about the value and risk still inherent in being out in today’s health care environment. There are good legal, professional, educational, and support resources.

Health care professionals and consumers alike must take the opportunity to educate with this book. We recommend it for coursework in universities, libraries in health care institutions, and reference book shelves in offices everywhere. Similarly, we challenge organizations to develop non-discrimination policies in practice and employment. The Guide gives helpful suggestions for doing this.

This book can shape a paradigm for health care that is sensitive to our needs as patients and as people. The majority of LGBT patients and clinicians will not have access to the resources offered in urban centers. Therefore, all clinicians need to develop an LGBT health care vocabulary because we are everywhere.

And I have to tell you, I love the rainbow umbrella on the cover.

This is just an excerpt from this issue of White Crane.   We are a reader-supported journaland need you to subscribe to keep this conversation going.  So to read more from this wonderful issue SUBSCRIBE to White Crane. Thanks!

Jeff Huyett is a contributing editor to White Crane and a nurse practitioner in NYC.  His clinical work has primarily been in Queer Health with a focus on HIV, rectal and Transgender care.  He is the Radical Faerie Daisy Shaver and is involved with the development of Faerie Camp Destiny Radical Sanctuary in Vermont.  He can be reached at JeffANP@aol.com.  He writes the "Owner’s Manual" health column in each issue.

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WC75 – Owner’s Manual – Jeff Huyett

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Hitting the Pause Button
By Jeff Huyett

Pausing life for a few minutes can be like hitting pause on a DVD. We step out of the story and can reflect on our place within it. Without a narrative telling us what to feel or think, we can listen to what we hear from within. I routinely ask patients about the way they relax. Often, they tell me that they relax by going to a movie, watching television or reading a book. You can rest your body this way but your mind is still engaged with something exogenous. When do I clear my mind to listen to my body? Are there subtle sensations and discomfort I didn’t notice? When I do stop, become physically relaxed with my mind empty of clutter, how do I feel about myself as a person? What outside stressors in my day-to-day living really matter in the bigger picture of who I am?

This summer I had the opportunity to quit my full-time employment and spend most of my time living at Faerie Camp Destiny. Destiny is the Southern Vermont jewel in the necklace of Faerie Sanctuaries around the globe. The faeries there are building a timberframe and strawbale kitchen. I spend as much time as I can laboring, hanging out, and making music on 166 acres of mountainside woods. My days there are influenced by only a few people. The daily chores of living on a rough commune became the ritual of the place. There is always a little tending to daily food preparation, dish washing, gardening, and water hauling. But in a collective groove these tasks dissipate through the numbers and chores become simple.

At Destiny, my body feels relaxed and typically devoid of any tensions in my neck or my mind. When stressors arise, I am very aware of them. I simply attempt to diffuse them and my body and mind are back to their "baseline" place. Things feel well and right. I can cope with any obstacles in my day or my carpentry work. When I  am rested and make music with the faeries, art comes pouring out of me. In sleep, my dreams seem more vivid in sight and sound. I remember them in the morning. Twice this summer I had flying dreams that were so real to me that, when I awoke, I had that woozy feeling of centrifugal force.

In August I started working a few days a week at the queer health center in NYC. I spend two to four days in the city and head back up to Vermont each weekend. The contrast is sometimes startling but very instructive. Drinking coffee before work on the roof of my loft, I look at the view of Manhattan. The vista is breath-taking and gives me such a deep sense of awe first thing in the morning. I get the same open, expansive feeling I have at Destiny. Then, something happens. I become aware of the time and a schedule descends on my self. I tense up as a list of morning accomplishments forms in my head. I need to prepare to leave, get on a subway, call so-and-so, then arrive to work on time and keep on schedule all day. All of the sudden, I’m governed by a sense outside of me that takes my mind out of my body. The expectations of the day seem to compel me from without instead of the desires from within. A sense of irritation begins to bubble within me.

This is just an excerpt from this issue of White Crane.   We are a reader-supported journaland need you to subscribe to keep this conversation going.  So to read more from this wonderful issue SUBSCRIBE to White Crane. Thanks!

Owner’s Manual is a regular feature of White Crane. Jeff Huyett is a nurse practitioner in NYC. His clinical work has primarily been in Queer health with a focus on HIV, rectal and transgender care. He is the Radical Faerie Daisy Shaver and is involved with the development of Faerie Camp Destiny Radical Sanctuary in Vermont and can be reached at JeffANP@aol.com

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WC74 – Owner’s Manual – Jeff Huyett

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74_ownersmanualHealth Dogma or Smorgasbord
By Jeff Huyett

I recently heard a young Muslim man speak about religious plurality. He noted that much of the conflict occurring between the Judeo-Christian and Muslim worlds is based on a religious absolutism that prevents discourse between the religions. Each has the philosophy that its path is the one true path to holiness or the Divine. All others are infidels or non-believers in need of salvation or enlightenment. The work of these religions is, then, to proselytize to those outside their belief system to change their belief to be the same as theirs. Thus, conflict arises because each believes that theirs is the only true way. This young man’s notion was that modern day religions must accept the beliefs of others as possibilities to remove the innate conflict. Were religions to embrace this philosophy, much of the conflict of between monotheistic religions would begin to dissolve as each could embrace the other as heading down a path to the Divine though it may be a different path than their own.
Health beliefs are often similar. We tend to believe that one philosophy is better than others. We adhere to a method and believe that other ways are just not as healthy. Sometimes this absolutism can create conflict with others and strict adherence may actually be causing harm unbeknownst to that person.

In the burgeoning HIV epidemic of the ‘80’s, Western Medicine had limited answers and even less treatment for those living with the disease. In the midst of an emerging “New Age” philosophy, many Gay men and other folks with HIV turned to “alternative and complementary therapies” to find healing and treatment for their disease. In the era when AZT was prescribed in very high doses, many people avoided this treatment which was sometimes as deadly as HIV itself. Desperate for relief and healing, people with HIV energized many of these older philosophies toward healing in this country. This expanded interest in alternative methods has continued and grows even today. The growth of complementary therapies has even stimulated development of regulation of  these therapies through the Food and Drug Administration much the same as pharmaceutics.

Many “alternative” methods for health are older than modern medicine. Their roots come from traditional healers and practitioners who existed long before “medicine” was organized. As a nurse, I honor the importance and place of these methods in patient care. But sometimes users of these methods can adhere to a sort of dogma about health and health practices that collides with the views of doctors or nurses in this country.
There exists today, still, people who do not believe that HIV is the cause of immune suppression that can lead to opportunistic infections that define AIDS. I’m still baffled when I meet patients who refuse to believe that HIV is the cause of AIDS and refuse to test to see if they are infected. Because I believe in the practice of collaboration with my patients, I try hard to relate to patients with these beliefs and find a way for us to hit common ground in our relationship. It’s not always easy.

It is incredibly sad when I provide an HIV-positive diagnosis to someone who has become ill with an opportunistic infection and it is their first knowledge of having HIV. It just doesn’t make sense to me for someone to avoid testing because they don’t believe they will become ill with HIV. An infection, like pneumocystis carnii pneumonia, occurs and can be deadly if treatment is avoided. And the scarring caused by this bug can cause breathing problems for the rest of the person’s life. HIV wasn’t in the patient’s belief system, they wouldn’t get tested, and their immune system failed before they even knew they were ill.

I used to be very touchy-feely with patients like this to honor their beliefs. Today, it’s just too difficult to let this kind of belief slide. I have to confront this denial and ignorance as I cannot watch another person die senselessly by their own misinformation. These patients will tell me that HIV isn’t the reason that people die and that they die from the antiviral therapy that is prescribed. Since I lived through the times when I watched a patient a week be buried, I just cannot keep my cool. I tell them directly, “If HIV is not the cause of AIDS and the meds are poison, why is it that people are not dying like they used to before the ‘cocktail?’” Or, “With your disbelief you dishonor all the men and women who have died before there actually was effective treatment.” Typically, when a patient will not come around to understanding HIV as the cause of AIDS, I have to refer them to another provider. Our relationship just won’t work effectively for either of us. Now, I understand that we don’t have all the answers about HIV and it’s natural history and treatment, but I feel pretty confident that we are heading in the right direction.
This type of extreme belief isn’t especially common but I come across it often enough. I even have providers send patients to me to try to help them work through their disbelief. But this really isn’t the role I like to play. I like the role of collaborator with the patient. I like to work with patients to understand their bodies and the particular illness with which they are bothered and come to some level of healing path that will ensure their health as well as maintain the integrity of their beliefs.

Commonly, I will encounter a patient who needs a particular pharmaceutical to treat their illness but they’ll refuse to take anything. I’m comfortable with recommending non-prescriptions for treatment. I like to have patients adjust their diet and change their lifestyle as a way to improve their health. Prescription medicines are commonly the last thing I recommend. But sometimes, a patient says “I don’t take pills,” or “I won’t use prescription medicines.” At the same time, these patients often use a variety of herbal and supplement preparations that they will take multiple times a day.

They use complex regimens of pills, powders and pastes that can make even a complex HIV regimen look pretty simple. They will adhere to a regimented diet that limits their ability to interact and socialize. They worry about getting in their treatments to such a level that can cause them great anxiety. I’ve never felt that this kind of management was very healthy.  I use the term “health monotheism” to describe patients who completely reject all other methods of health and healing for the path they have chosen.  There is no one path to health that I believe is completely right. And while most complementary therapies are fairly safe, some can be just as dangerous as the medicines that come from big pharmaceutical companies.

One example is a young woman I saw who came to see me because she was feeling fatigued, had a poor appetite, and felt depressed. I spent time talking with her about her health beliefs, assessing health patterns and choices, and doing physical exam. Generally, she had been very healthy through her life. She disclosed that she was taking high doses of chamomile to reduce anxiety she was having. She had heard it was safe and helpful to calm her and had been dosing in this high range for three months. She was pleased with the results but was now concerned about these other symptoms that had arisen. She was working with an energy healer and acupuncturist.

She typically engaged a physician only when she her acupuncturist told her or when her current practitioners could not relieve her symptoms. She voiced distrust of the “big medical machine” and doctors. She had never seen a nurse practitioner and hadn’t had a women’s health preventative exam in over five years. (This is the exam that checks one’s breasts and cervix for early detection and prevention of cancers.) When I felt her liver I noticed that it was tender and mildly enlarged. Assuming she had a hepatitis virus, I did the typical battery of liver tests and immunological tests. There were no signs of infection but obvious liver inflammation. I recommended she stop the chamomile immediately and come see me in two weeks.  She did this and her liver tests came back to normal range. Her presenting symptoms were relieved.

While this clear-cut example isn’t common, the disdain for the US health care system is. Certain personal events or community norms can shape our trust in the people we seek out for advise on healing. One bad experience can color our future with any provider. When one method or clinician fails us we can grasp on to one type of philosophy and then adhere to it religiously. This is when our health monotheism can lead to a dogma that can be harmful.

In my last column, I encouraged readers to find a provider with whom they are comfortable and find it easy to develop a relationship. The primacy of our relationship with a healer is really the most important part of the healing relationship. We work with someone who gets to know us and our beliefs, is familiar with our bodies, and the subsequent recommendations come from this relationship of knowing. For basic wellness and health promotion, there exist many methods within the various philosophies, each with a grounding in history, repetition, and, sometimes, research. When an illness or lack of health creep in, various philosophies tend to diverge on causality and thus, can create discord between the beliefs about the best way to heal.

Since health is individualized, I don’t believe one method is better than another to achieve health. For myself, and for patients, I believe that the best approach to healing is first to be well informed. I recommend that one seek information from various sources to achieve an understanding about what is going on in their bodies. The patient is the one who is best at knowing what is going on since they reside in their bodies. But their information about their bodies may be so skewed as to cause misinterpretation. This is where a consultant can be beneficial. Chinese medicine, for example, is drastically different from Western medicine in causes of illness and treatments. So many of us, then, have an opportunity to seek guidance from two very different modalities in order to be better informed about our experience of our bodies. We don’t have to believe everything about either philosophy in order to gain from its wealth. But each can provide a rich source of information with which to make decisions.

I typically find that the patient who does best is the one who is informed and bases their decisions on that information. So a plurality of beliefs can only benefit us when it comes to our health. If no one method is perfect, then this variety of information sources can only improve our own path to health by providing us with a broader range of health choices and selections. We can take the relevant information from the various philosophies to develop a plan that suits our own personal need.

I encourage the health absolutists to explore a variety of methods. Thus, when a patient is completely sold on one method, I encourage them to talk to another type of clinician for an opinion about where their body is and how it is responding to the current practice the patient is keeping. Since physical assessment varies between philosophies, one clinician may uncover something a clinician from a different paradigm failed to unearth. This disparity of philosophy then provides for a broader range of assessment and method. So gaps in one philosophy can be filled in where another philosophy lacks.

If you have only seen physicians for your health care, consider seeing a clinician from a completely different paradigm. See an acupuncturist or body worker or even a nurse. Expand your notion and understanding of your body and your particular concern. If you see only “alternative practitioners” consider an evaluation with a physician, nurse practitioner, or physician’s assistant to evaluate, in Western terms, the results and consequences of various therapies on your body. Though the research paradigm in Western medicine continues to be questioned, it can give us many valuable answers about the operation of the body that are readily objective and easy to interpret. So when a patient is using a therapy not extensively researched, that patient can use well-proven methods to evaluate outcomes.

The danger of absolutism is what you miss. An example is monitoring labs like the woman doing the chamomile. Though we may feel well, some treatments may have a long-term impact on the body. We do not have to do everything that our healers recommend. But we can enter and continue our path to health and wellness with our eyes wide open. We can use the wealth of information available to make conscious informed decisions as opposed dogmatic adherence.

This is just an excerpt from this issue of White Crane.   We are a reader-supported journaland need you to subscribe to keep this conversation going.  So to read more from this wonderful issue SUBSCRIBE to White Crane. Thanks!

Owner’s Manual is a regular feature of White Crane. Jeff Huyett is a nurse practitioner in NYC. His clinical work has primarily been in Queer health with a focus on HIV, rectal and transgender care. He is the Radical Faerie Daisy Shaver and is involved with the development of Faerie Camp Destiny Radical Sanctuary in Vermont and can be reached at JeffANP@aol.com

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WC73 Owner’s Manual – Jeff Huyett

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73ownersmanual_3 This regular column will explore queer health in America today. In the nursing tradition, I view health in the dynamic interplay of mind, body, and spirit within a culture, an environment, and a time. I hope to foster in the reader a sense of understanding and empowerment to move closer to health.

I came out in college, studying to be a nurse when HIV emerged in the early ‘80s. This confluence of events colored my professional and personal life. I’ll share some of my experiences of nursing queer people shaking off dis-ease by changing themselves and the world around them during, through and after that era.

Health cannot be achieved alone. It is not a commodity that someone can provide you. I hope to challenge the readers’ assumptions and encourage health action in a culture, an environment, and a time. 
Like most Americans, I have found myself standing, thirsty and dazed, in front of a convenience store beverage cooler spilling over with choices. There is just so much from which to choose. The confusion starts when I begin to compare price, content, or expected result. Mass marketing impacts my selections, too. I sometimes get exasperated by all the choices, give up and buy water. Health care choices can be just as overwhelming. Flashy media images promote people, services, and “clinically proven products” as readily as grocery store selections. This writing will explore the concepts of health and the current paradigm in which it exists.

Health, the concept, is complex to define. It is experienced individually, so it eludes common description. For discussion’s sake, let’s say that health is “a state of optimal well being of the mind, body and spirit.” Factors that impact health are personal, social, genetic, economic, cultural, and environmental. These systems interact and impact on each other.

Health is multi-factorial requiring on-going upkeep, evaluation, and change in the individual, its family, culture, social structure, and environment. When neglected, health will diminish. When optimized, health will flourish. Health, then, is a practice we follow through life. It’s not static. Upkeep on a healthy path requires consciousness of the individual as well as society. Conceived in this broad sense, health considerations must permeate the individual, its people and ways of being in order to be achieved. Health of a species and its environments is then a dynamic interplay toward balance.

In the American medical model, health is the absence of illness. If we don’t get sick we must be okay. Health is something obtained like a product. If we get ill, we go to the doctor. We’re told what’s wrong and what to do. This interaction, pills or treatment costs money. Americans are set up with the paradox that if one is insured, one has health. When nothing is wrong, you don’t get assessed. Consequently, when you have no insurance, you will engage the system only when you absolutely must. In the midst of a health crisis your overall health will not likely be considered. Wide variations exist in access to health care. This model of disease treatment as health has been ingrained in the American psyche.

Entering the fee-for-service health care system is when the dazed confusion begins. There are lists of plans and lists of providers. How do you choose? Does advertising pressure affect your health choices like it does your beverage selections? When we land a job providing health insurance, a plethora of forms and insurance booklets will be presented. We’ll make decisions with little time to overview the insurance plans. A sense of “Phew, I’m employed. I’m covered” may occur. But what are we covered for? Participating providers are organized based on disease states treated like cardiology, dermatology, and gynecology. There’s something called “internal medicine.” Whatever that means! Who do we — healthy people — consult if we want to stay well? You guess who and what is right for you. Sometimes you hit it. You are provided attention pretty much only if you’re sick, right? Gay men have to argue with insurances to get specific preventative coverage like hepatitis vaccinations and human papillomavirus screening. Newborns and students get hepatitis vaccinations paid for, but gay men, who get lots of hepatitis, cannot. Millions of Americans are uninsured. Striations of health care beliefs and patterns run through our culture when access is so varied.

I grew up in the 60’s and 70’s watching a minimum of two-to-three hours of television a day, like most everyone else. Food and beverage advertising came streaming at me. Most of the food was boxed, canned or frozen, usually sugary or fatty, and easy to prepare. Shows on health were tucked away in obscure hours. Cigarettes and alcohol were advertised. There weren’t many brown-skinned folks in television.
In school PE was about sports not fitness. Health education was nine weeks of one-hour lessons with nothing about sex, emotional wellness, or drugs. My mother had to sign permission to take the classes on Evolution and Reproduction in Advanced Biology. If one joined 4H or the Boy Scouts you’d get great health and safety teaching. If you are gay you cannot join the Scouts. I had a basic understanding of my body but sought out that information. I got a usual middle class education and was armed to leave my mother’s home with a fairly good idea of how to take care of myself. My male college peers, I observed, were not so prepared. They had limited ability to prepare food for themselves, manage their garments, or tend to themselves when ill. In my interactions with patients I find that most people have a pretty poor understanding of how their bodies work, and have a huge range of notions about ways to take care of themselves. I also experience that Americans have a lot more reserve and shame connected with showing me their bodies. Thus people enter into the current “health care system” with limited basic operating instructions about themselves or the systems of delivery and are probably self conscious and awkward.
The development of the Internet, in the age of AIDS, allowed queer people to get information lacking in our meager health education systems. I find patients coming to me much better informed, but with much more commercially biased information. Once again mass media and marketing have a dizzying effect.

In my female-dominated profession I embrace nursing, its history and culture. Part of that history is domination by modern medicine, a mostly male profession, over the existing health delivery and beliefs systems. The “wise women” in villages, witches, Native American healers, and midwives are some of the fore bearers of the knowledge I use as a nurse practitioner. Much of that oral tradition of healing was lost with the genocide of witches and local healers. Nursing theorists discuss this time as the political beginnings of the medical associations to suppress “the women who keep the people healthy and out of hospitals” and prevent the study of disease. My feminist leanings, as well as my first-hand personal, political, and professional experience of HIV, have made me distrustful of modern medicine, the public health system, and pharmaceutical industry.

The queer health movement shakes up the American health care system in radical ways. When the needs of people living and dying with HIV increased in the 80s, legions of gay men and lesbians set up networks of care and services. Not waiting for the existing health care system to respond, we set up our own systems of support, nutrition, counseling, and financial assistance. Queer clinicians provided health care to the masses, but weren’t reflected in health statistics, research or policy. Our exploration of our own health needs now pressures the medical and public health systems to evaluate and attend to our particular concerns. Queer health consumers have invigorated “alternative” health methods, often older than modern medicine, when Western modalities fail.

Our medically-oriented, disease treatment model of health is not sustainable. We’re witnessing this with inflation of costs, reducing of service and the demise of Medicare. We could say, then, that the existing dominant medical paradigm of health care is utterly flawed. The uninsured and many others must seek out methods for health that the existing structures just don’t provide or support.

Physicians study disease; Nurses, wellness. It is time for the over-arching paradigm to be informed by a philosophy more realistic to the multi-faceted human experience health. Nursing is one philosophy. There are others that view the human as an integrated whole such as Ayurveda, Acupuncture, or naturopathy. 
Let us envision a different health model. First, health teaching, not generated by the commercial industry, permeates our culture and schools. Health basics become as important as reading, writing and arithmetic. Health messages would address mind, body, and spirit. All citizens would be fed, dry and comfortable and national policy would reflect this reality. Periodic health assessment by a provider would include your image and knowledge of self, your ability to care for yourself, understanding of growth and development, aging, common afflictions and how to tend to them. The assessment is informed by cultural, spiritual, economic, and social knowledge. This patient-centered evaluation method assesses your level of health, the risks faced, and the ways to improve and prevent based on your historical, cultural, and genetic package. The assessment happens periodically when you’re well and able to comfortably interact. If you get sick, you engage this provider, informed of your being, to get advice and recommendations based on a much deeper understanding of you, not just the disease. You develop a relationship with the provider and trust them. Your health partner will not know everything, can admit that, and help you find answers when they don’t have them.

This ideal health care system isn’t close to reality today. Continue to learn about yourself, your body and each other through information and education. Be an on-going student of the human race. Take time to be conscious of yourself, those around you and your environment. Adapt and change based on the needs of you and your community. Find a healer with whom you feel comfortable. Interview and ask questions about provider and philosophy. Get referrals from friends. You want to feel welcomed, open, and prepared to share and receive. If there is no spark of connection find another. Not all healers assess mind/body/spirit. Look for someone who does. Ask questions. Manage personal risk. Be open to incorporating various modalities and professionals. Rigid belief or practice is probably as detrimental as no practice. Mostly, be sustainable. Make health a routine in your daily life through simple, ritualistic care and observation of yourself, others, and the environment around you.

I have been accused of being utopian more than once. To sustain, health requires a revolution of self and the world in which we live.
Humans, as organic beings, are capable of this change.
The story of evolution is proof…if you believe in that sort of thing.

This is just an excerpt from this issue of White Crane.   We are a reader-supported journal and need you to subscribe to keep this conversation going.  So to read more from this wonderful issue SUBSCRIBE to White Crane. Thanks!

Owner’s Manual is a new, regular health feature of White Crane. Jeff Huyett is a nurse practitioner living in NYC. His clinical work has primarily been in queer health with a focus on HIV, rectal and transgender care. He is the Radical Faerie Daisy Shaver and is involved with the development of Faerie Camp Destiny Radical Sanctuary in Vermont and can be reached at JeffANP@aol.com

Gay Health, Jeff Huyett, WC72 - Cinema

WC72 – Our Bodies: HPV & Gay Men

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Our Bodies
HPV
Yes, I’m Talking to You!
A Conspiracy of Silence about Gay Men’s Anal Health

By Jeff Huyett

If you have watched television over the last six months, you’ve seen public service announcements and advertisements about the advances in prevention of human papillomavirus (HPV)-related cancers.

Thankfully, a vaccine has been developed that will prevent nearly all cervical cancers and genital warts in women. Sadly, one will only see a female face in regards to the prevention of HPV-related cancers. Gay men, who face a much higher risk to develop HPV-related cancers, are non-existent in advertising and public health announcements about these medical breakthroughs.

72_ourbodiesCurrently, gay men develop anal cancers due to HPV at the alarming rate that women developed cervical cancer forty years ago when preventive screening began. That means that HIV-negative gay men develop anal cancers at a rate four-times higher than cervical cancer in women today. HIV-positive gay men develop anal cancers at nine times the rate of cervical cancer. Yet most gay men haven’t even heard about HPV. They do not know that methods exist to prevent the development of anal cancer due to HPV. HPV is the most common sexually transmitted infection with six million new infections each year.

Policy-makers and public health officials have known that gay men are getting anal cancer at increasing rates. Scientific papers in medical journals have reported the increase of anal cancer in men in cities like San Francisco for some time now. Why is it that gay men are not afforded the same kind of preventive screening as women if the risk is so much higher?

Just twenty-five years ago, I was part of a small number of gay men’s health advocates sounding the alarm about the impending HIV tsunami in large Midwestern cities. We were told not to worry, this “gay cancer” was only going to happen in New York, Los Angeles, and San Francisco. We knew different. We’d already buried gay men whose families has refused their bodies after they died. We also developed a healthy skepticism for public health officials who relied heavily on outmoded data collection systems and worked in a homophobic climate.

As a gay men’s health advocate during those twenty-five years, I find myself, once again, sounding an alarm about a health issue that impacts gay men more heavily than others and, yet, is being ignored by policy makers, insurers, and even gay men and their health care providers. The alarm isn’t as loud as twenty-five years ago when I watched friends, lovers, and patients dying rapidly from HIV. Nearly 2,000 men a year will be diagnosed with anal cancer. The cancer is treatable with chemotherapy and radiation treatments and it’s dangerous if it spreads throughout the body. The most alarming part, the part about which I speak most loudly, is the ignorance and inaction of gay men, health care providers and policy makers.

While anal cancer isn’t that common, it’s preventable. But you can only prevent anal cancer if you know you have HPV, are screened and have the precancerous areas treated. You can only do this if you live in an area where anal Pap smear testing is available and resources exist to provide preventive follow-up.
So why aren’t these methods employed? Clearly, one reason is homophobia — on the parts of public health officials and gay men themselves. You only have to read the Center for Disease Control’s (CDC) webpage on “HPV in Men” to see the blatant disregard for our health:

“The risk for anal cancer is seventeen times higher among gay and bisexual men than among heterosexual men.”

“There are currently no tests approved to detect early evidence of HPV-associated cancers in men.”
A lie.

The anal cytology test that screens for tissue changes can detect HPV-related cancers in the anal canal and is approved by the Food and Drug Administration. The test to screen for the HPV virus itself, while approved to screen a woman’s cervix is not approved to screen the anal canal for HPV.

The medical establishment — including gay health providers — is waiting for the study that proves that the prevention methods work. Specialists, like me, have been employing various methods to prevent the growth of HPV-related tissue mutations for nearly 10 years. We see it work to prevent cancer. We do not witness cancer develop in those who have preventive treatment. But clinicians demand that therapy be absolutely proven before employing screening. How do you research a currently employed method? You give half the subjects the treatment and you give have the subjects no treatment and see who gets cancer. This just isn’t ethical research when the prevention method is already employed and appears effective in those who use it.

Some officials say we shouldn’t recommend screening and treatment until we have more answers. This was not the approach taken to prevent cervical cancer. We didn’t even know HPV caused cervical cancer when clinicians began screening and offering preventive treatment. But it was considered poor practice not to enlist the methods available at that time to do everything possible to prevent cervical cancer. And it worked. Cervical cancer has been reduced by 500%.

During the HIV epidemic, clinicians like me became used to working in an information vacuum. We learned to keenly read scientific papers, experiment for non-existent treatments, and give full attention to layers of homophobia that existed in policy and procedure. In this information void, with no HIV treatment, we heartily encouraged gay men to run and get tested for HIV.

Anal cancer, and the tissue in the anus that it affects, has many similarities to cervical cancer. We do have an existing model of information to rely on — gynecology. Like other health issues, one employs existing knowledge about a disease state until more details of the disease emerge. I readily employ the methods of anal screening and prevention and see it work! My skill as a gynecological practitioner has informed me in the treatment of these HPV-related tissue mutations. Any gay-friendly health care provider interested in providing comprehensive health can do this.

A simple swab in the anus can detect the presence of abnormal cells. “Anal cytology” is an FDA-approved test and it has utility to inform the patient and the clinician about abnormal anal tissue. More precise examination and testing of anal tissue can isolate precancerous lesions and then one of many “ablative” techniques can be employed to remove this mutated tissue in-office. So why aren’t these methods demanded by gay men who are at risk?

I believe that gay men are plague weary from HIV. I believe that we are reluctant to address another health issue related to our sexual practices so just don’t advocate on our behalves. But, I find it astonishing, that in the midst of the HIV pandemic, we are unaware of another important health risk. Clearly, anal cancer prevention means we have to acknowledge we have butt sex. It dredges up the feelings of homophobia that we thought we had dealt with long ago. To screen properly, and to achieve optimal health, we must honestly admit to our sexual practices.

There is, still, a stigma to anal sex even in gay male communities. Bottoms are considered “less than” tops. For some, anal sex is considered “dirty” and therefore shameful. Even though research shows 40% of heterosexual women have engaged in butt sex, gay men are considered to have a corner on the market of this equal opportunity sex organ. Our sex is still considered unnatural. And we continue to own the shame that is contributed to that part of our body.

The anus is a nether region of the body not commonly inspected or felt by health care consumers or their providers. Standards of care for gay men do not always include inspection of the anal canal if one is having anal sex. It would be unconscionable to forego inspection of the vagina in a sexually active woman. Again, we do not apply the same standard of care for gay men’s sexual health that we provide to women. There should be no more shame in having testing for anal cancer than there is for women who have annual cervical Pap smears.

Like HIV, nothing related to anal cancer will likely change until gay men speak out. We learned this lesson with HIV. No one is looking out for gay men’s health so we must do it ourselves. It is time to demand changes in the health care system to bring our health screening and prevention methods into the modern age to reflect our risk. We must educate ourselves better about potential health risks, especially those that are ignored by governmental and officious bodies who are going to reflect the climate of the federal administration.

It is time that we become aware of anal health risks and prevention practices. We must do this for ourselves. No on else will.

In a recent letter I wrote to the CDC, I exclaimed my dismay that they were doing nothing helpful to prevent anal cancer in gay men. I explained that I would not be silent. I would continue to dog them as they clearly did not have my ass covered.

For more information visit www.gayhealth.com or www.analcancerinfo.ucsf.edu

This is just an excerpt from this issue of White Crane.   We are a reader-supported journal and need you to subscribe to keep this conversation going.  So to read more from this wonderful issue SUBSCRIBE to White Crane. Thanks!

Jeff Huyett is a nurse practitioner living in NYC. His clinical work has primarily been in queer health with a focus on HIV, rectal and transgender care. He is the Radical Faerie Daisy Shaver and is involved with the development of Faerie Camp Destiny Radical Sanctuary in Vermont and can be reached at JeffANP@aol.com 

Our Bodies is a regular feature of White Crane.