What We Don’t Know: The Unaddressed Health Concerns of the Transgendered
There’s really not much truth in the old aphorism that “What you don’t know, can’t hurt you.” And less so if you’re transgendered. The majority of transgendered people do not self-identify as transgendered. The stigma still looms too large. As a result, we know even less about ourselves than lesbians and gays.
Research studies, even those labeled “LGBT,” usually fail to include the ‘T’ and nearly always overlook the closeted transgender population. These members of our community still float beneath the surface, most of them invisible, like the unseen portion of the transgender iceberg This problem, which has not been adequately addressed, does more to hinder the collection of meaningful data than any other factor.
The LGBT Health Issues Companion Document, part of the Federal Government’s HEALTHY PEOPLE 2010 initiative, issued in the fall of 2000, dramatically underscores this shortcoming. Though not enough, there is some data on many of the important lesbian and gay health concerns. But what the document brings to light most is the lack of information about the bi-sexual, and the dearth of data on the ‘T’ community. Reading through it, one soon realizes that what we don’t know far exceeds what we do know (and what we need to know) about the health needs of the transgendered.
No Data and No Effort Underway to Change the Situation
“…there are no probability studies of transgender people reported in the literature and no effort underway to develop measures for inclusion in Federal surveys.” (p.15)
The closest thing we have to an estimate of the number of transgendered people in the United States comes from the psychiatric literature where estimates are that “one percent of the population may have had a transgender experience” (a phrase which lends a strange, surrealistic aura to the notion of being transgendered.) This number is derived from data which are supplied by mental health services 1 and does not account for those of us who have never self-identified or don’t ever come out to the psychiatric community. It is solely based on the numbers of those who actively seek psychiatric help.
The only other date source is from the approximately 25,000 U.S. citizens who have undergone Sexual Reassignment Surgery (SRS). The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (1987) estimates the prevalence of transsexual persons to be 1 in 30,000 for male-to-female (MtoF) transsexuals and 1 in 100,000 for female-to-male (FtoM) transsexuals. If this data were used to conservatively estimate the transgender population, it would mean there are at least 175,000 – 200,000 transgendered people in the nation. But we must also consider that much of the data is collected from urban populations; it is skewed away from suburban and rural areas. (The Companion Document confirms that “there is substantial, disproportionate representation of transgender individuals in urban centers.”)
Furthermore, it’s not unreasonable to assume that the data follows a pattern of invalid reporting, not unlike that of the early figures on sexual abuse, which initially declared that two males were abused for every ten females, but later determined that the numbers were roughly the same. This suggests that the number of FtoM transsexuals is likely to be as high as the MtoFs.
This acute lack of information and skewed interpretations must be kept in mind when we look at the sparse information we do have regarding health concerns affecting the transgender population.
Specific Areas of Concern
“There has been very little research concerning cancer among transgender persons. One population-based study from the Netherlands suggests that overall cancer morbidity and mortality rates among transsexuals are comparable to those of the general population. Nevertheless, transsexuals’ exposure to hormone therapy over an extended period of time might be expected to increase the risk of certain hormone-related cancers.” (p. 104)
Huge sums of money have been spent on cancer research, but the only information we have about cancer and transgenders comes from the transsexual population. Those reports indicate that “estrogen is a risk factor for cancer of the breast…and it has been suggested that testosterone therapy may be a risk factor for such cancers in FtoM transsexuals.” 2
But what of the danger for MtoFs who are still biologically male and not aware of the need for preventive urological care and prostate examinations, as well as mammograms? Or of the FtoMs who may remain at risk for cervical cancer and require regular Pap tests as well as gynecological care and mammograms for remaining breast tissue, even if they have had breast removal? We can only speculate, since the Companion Document reports that “there are no existing data on actual risk.”
Nutrition and Weight Management
“No empirical studies on the nutritional and weight management practices of transgender persons have been conducted.” (p. 246)
In this area, too, there’s no reliable data. But, as the Companion Document suggests, “it is reasonable to expect individuals who are transitioning to the opposite gender (to) modify their diet, eating behaviors, or perception of weight to appear more like the desired gender.”
How many FtoMs try to raise their Body Mass Index (BMI) to make themselves more masculine looking? What are the rates of eating disorders among MtoFs who diet in order to look more feminine? Or of compulsive exercise to increase muscle? Consider these behaviors in light of the fact that the use of hormones (in some cases, illegally obtained) can cause weight gain and effect lipid profiles, thus increasing the chances of cardiovascular disease.
Once more, the focus is on the transsexual population (since that’s the only source of data.) But what of the closeted cross-dresser or transvestite who is taking so-called ‘natural hormones’ or is suffering from an eating disorder, but won’t (or can’t) mention it to his or her doctor?
In addition to these direct links, there may also be co-occurring trauma issues. Serious research is needed in all of these areas and education and intervention programs should be developed.
Aging and the Elderly
“Little research exists on health promotion or special health concerns for older transgender individuals.” (p. 135)
As the ‘boomers’ grow older and the population of the country shifts in their direction, so does the number of older transgendered people. Of course, many of the problems of the elderly are the same, regardless of gender identity, but what of things like long-term hormone use and the interactions of hormones with other medications often prescribed for chronic conditions? And conversely, problems are initiated when one decreases or eliminates the use of hormones. We should also be concerned with diseases of the elderly, like “polycythemia vera,” an acquired disorder of the bone marrow, which causes an overproduction of white and red blood cells and platelets. Occurring more frequently in men, there is no known cure, but a possibility that it is affected by male hormone use. In these kind of matters, our concern should be not only for transsexuals, but for the transgendered who are closeted as well.
Perhaps those who need educating more are the service providers who encounter a transgendered person in a Nursing Home or during a home visit. The attitudes toward transgendered individuals usually are not positive. It’s not something we like to think about, but we need to recognize that transgendered persons who are forced by insensitive health care workers to suppress their transgender nature are likely to suffer depression and even contemplate suicide. Studies are needed to identify the level of such incidents and workers in institutions housing the elderly need to be educated and sensitized to the needs of their transgendered clients.
Being transgendered is not something that goes away with aging. There are likely to be circumstances where the death of a spouse causes a sense of freedom for the individual who has led a closeted existence. Releasing one’s transgender nature may result in a flurry activity that can seem strange to those unfamiliar with it.
Furthermore, there are an increasing number of transgendered people who decide only later in life that they are transsexual and choose to transition despite their years. These individuals have very special medical and psycho/social needs.
Violence & Hate Crimes
“…although most people who were polled believe that gay and lesbian people should have equal civil rights, they also continue to rank gay people among the most disliked groups of people in the country. And secondly, no public opinion data have been collected nationally on bisexual and transgender persons.” (p. 117)
Despite some strong rhetoric by a number of organizations and a few influential people, recent data challenge the notion that the United States is totally antigay.3 This three-decade move toward opportunity is tempered by findings which suggest that even though behavior has changed, attitudes have not. Anti-LGBT societal attitudes continue; acts of discrimination which perpetuate disparities and limit opportunities are simply more covert now.
And while the lesbian and gay communities have promoted legislation to support anti-discrimination, they continue to sacrifice the ‘T’ in LGBT as necessary for the legislation to pass. Only recently have cracks developed in this wall. Polls now show an increasing willingness on the part of those who ‘talk the talk’ to ‘walk the walk’ as well.
The saddest aspect of these circumstances is that the majority of assaults against transgendered persons are never reported to the police. This situation exists because trans-gendered individuals have little social support and limited or no access to legal recourse. (To report the crime is to ‘come out.’) Sexual violence against MtoF transsexuals is common, but such incidents are rarely prosecuted in the criminal justice system.4 Of the transgendered individuals sampled in the Washington Transgender Needs Assessment Survey, 13.5 percent reported having been the victims of sexual assault. 5
Transgendered people may experience greater disparities than any other group in being the victims of violence. And transgendered people have been excluded from almost every hate crime bill, whether at the Federal, State or local level.6 (Only four states have included transgendered people in their hate crimes laws—Minnesota (1993), California (1998), Vermont (2000), and Missouri (2000).7) The first major study on violence and discrimination against transgendered people in the United States8 found that 60 percent experienced some form of harassment and/or violence sometime during their lives, and 37 percent experienced some form of economic discrimination.9
The most socially acceptable, and probably the most widespread, form of hate crime, especially among adolescents and young adults, is targeting LGBT people. 10 , 11 , 12 , 13 Is it any wonder, then, that among visibly transgender adolescents, refusal to attend school is a common problem? According to the Harry Benjamin International Gender Dysphoria Association, collaboration between school officials and treating professionals may be necessary if transgender adolescents are to continue their education.14 The Association encourages early hormonal interventions in profoundly transgender adolescents as a way to contribute to school completion because treatment delays commonly result in educational and social delays. 15
While more documented research is needed, almost all transgender people, whether female-to-male (FTM) or male-to-female (MTF), admit that preventing the experience of violence within their lives is a ubiquitous aspiration.16 This includes subtle forms of harassment and discrimination, as well as blatant verbal, physical, and sexual assault.
“Transgender people are likely to experience some form of victimization as a direct result of his or her transgender identity or gender expression. A link between these experiences and mental health disorders such as post-traumatic stress disorder is widely suspected, but has not been adequately documented.” (p. 220)
The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV)113 lists four specific diagnoses that are applicable to transgendered persons:
- GENDER IDENTITY DISORDER (GID) in adolescents and adults (302.85)
- GENDER IDENTITY DISORDER in children (302.6)
- GENDER IDENTITY DISORDER not otherwise specified (GIDNOS; 302.6)
- TRANSVESTIC FETISHISM (302.3)
(Note: The numbers in parentheses represent the numerical nomenclature of the International Classification of Diseases, which is the basis for classifying mental disorders within DSM-IV and used by clinicians, medical record librarians, administrators, benefit claims representatives, researchers, epidemiologists, and program planners.)
Being Transgendered Does Not Mean You’re Mentally Ill
Under the DSM-IV, these diagnoses require evidence of distress or impairment in functioning. Functional impairment that is solely due to societal prejudice based on perceived social deviance does not meet this criterion.17 So, under the DSM-IV, being transgender does not in itself constitute a mental disorder.
The report goes on to state that the diagnosis of GID is generally applied to transsexuals, while Transvestic Fetishism is reserved for crossdressers. In what might be the report’s biggest understatement, they add that the “diagnoses of GID and Transvestic Fetishism are considered pejorative by many in the transgender community.” They explain that the terms stigmatize by declaring the behavior as non-normative, the same way that homosexuality was pathologized before 1973, when it was removed from the list of mental illnesses by the American Psychiatric Association.
What studies there are have concluded that GID and Transvestic Fetishism are innate and, therefore, ought to be considered a normal part of the diversity in human nature. This has been supported most recently in the work of William Reiner of John Hopkins and that of Milton Diamond, a biologist at the University of Hawaii and Keith Sigmundson a psychiatrist from Victoria, British Columbia.
Transgendered people often avoid seeking treatment for depression because they fear that being transgendered will be assumed to be the cause of their symptoms. While there’s some truth to that, there’s no evidence of any direct link. The depression that arises more often than not stems from the difficulty the transgendered person has dealing with the social stigma and as a result the person may actually be underdiagnosed.
In the Washington Transgender Needs Assessment Survey, the suicidal contemplation rate was 35 percent, while the attempt rate was 16 percent.18 Of suicide deaths, another study of more than 2,000 cases found only 16 possible suicide deaths following surgical sexual reassignment.19 In a third study, of 479 MtoF and 285 FtoM transsexuals, about 25 percent and 19 percent respectively had attempted suicide prior to transition.20 Most other studies report a pre-transition suicide attempt rate of 20 percent or more, with MtoFs relatively more suicide-prone than FtoMs.21
Another form of self-harm in transgender persons is attempted or completed autocastration or genital mutilation. A study of a cohort of transgender individuals who applied for services at gender identity clinics reported that genital mutilation was attempted by 9 percent of the males, while breast mutilation was attempted by 2 percent of the females.22
Clearly, contemplating, attempting, and succeeding at suicide is not uncommon in the pre-op transsexual population. Given the high cost, the lack of health insurance coverage, and other difficulties involved in obtaining Sexual Reasssignment Surgery (SRS), as well as the social pressures, this should come as no surprise. If anything, it ought to provide evidence of how deeply transsexuals feel the need for SRS.
There is also some evidence that changes related to gender identity significantly affect partners. This often unsettles relationships, causing significant emotional stress to both individuals.23 Additionally, when initially introduced to their partner’s transgender status, spouses, partners, and significant others often question their own and their partners’ sexual orientation. Partners’ symptoms can be severe and sometimes resemble those of post-traumatic stress disorder.
As in many of these areas, while significant data exists about the transsexual population, there is no solid research into suicides involving transvestites, cross-dressers and other gender-conflicted individuals.
Alcohol and Other Drug Abuse
“Not only is there a lack of data for the bisexual and transgender population in particular…Many substance use programs are not sensitive to the needs of transgender individuals, and few have the capacity to address the realities faced by the transgender population.’ (p. 334)
Alcohol and drug abuse studies have focused primarily on lesbians and gay men. Few include bisexual or transgender persons. And most substance abuse treatment programs don’t deal with transgender issues. The Transgender Substance Abuse Treatment Policy Group of the San Francisco Lesbian, Gay, Bisexual, Transgender Substance Abuse Task Force reported that “transgender clients in substance abuse treatment programs experienced verbal and physical abuse by other clients and staff; requirements that they wear only clothes judged to be appropriate for their biological gender; and requirements that they shower and sleep in areas judged to be appropriate for their biological gender.”24
The transgendered tend to be “invisible” in program evaluation, intake, and assessment. Treatment programs rarely consider the identities and needs of transgender persons and treatment personnel often require transgender persons to conform to the gender of their birth sex. In the case of inpatient treatment programs, this may result in persons who live full-time as women being housed with men or being required to use male bathrooms. They may also inappropriately require transgendered persons to stop using cross-gender hormones as part of a treatment or detoxification protocol. In addition to the obvious mental distress, this can reduce the likelihood that the transgendered person will ‘stay with the program’ after it’s over and he or she has been discharged.
The Companion Document reports that “LGBT-specific standards for treatment services are severely lacking, and LGBT-identified and LGBT-appropriate programs for those who need and could benefit from them are not widely available.” This may even be more critical for the transgender community.
Sexually Transmitted Diseases (STDs)
“No prospective studies have been done on the risk of STDs for transgender persons.” (p. 309)
Sexual activity in the transgender community may be its darkest secret. While the risk for HIV and other STD transmission has been widely publicized in gay and lesbian circles, many transgendered people have neither the infrastructure nor even the awareness necessary to confront the associated dangers. In some respects, post-operative transsexuals may be better off in this regard. While still at risk for STDs, the MtoF or FtoM can still face the situation more squarely and take measures to protect him or her self. The situation isn’t so simple for others who are transgendered.
Transgendered persons who are sex workers face an even greater risk of STDs from their ‘Johns’ and from the injection of hormones and other intravenous drugs obtained on the street. Concern for these individuals is even more discriminatory because of society’s judgmental attitudes toward what is viewed as immoral behavior (and, therefore, deserving of punishment.) What is generally overlooked is that for many of these persons, there is no alternative. Sex is the only commodity they have which can earn them the kind of income needed to pay for the high medical and psychological cost of sexual reassignment surgery.
For the closeted transgendered person, their closet represents the biggest problem. There are no doctors there, no medical resources, and a much greater likelihood that medical problems may be improperly diagnosed. Again, there is no data, but anecdotal evidence suggests that the number is significant and that the members of this group, while publicly denying their sexual activities, engage in behavior which puts them at risk. To put it bluntly, there are many MtoFs who are not sex workers who privately engage in oral and anal sex with multiple partners of both sexes while vociferously denying it. A further complication to this is with the population of so-called ‘admirers,’ with whom transgender s (including pre-op transsexuals) have sex. Many of these individuals are married and not only carry STD’s from one transgendered partner to another, but also take them home to spouses. These include lesser known STDs like Chlamydia, Genital Warts, and Hepatitis B.
No studies have been done, but they are certainly warranted. Research is needed to ascertain the degree of sexual activity on the part of transgender persons and, of those, how many are at risk.
The Less Publicized STDs
Chlamydia a less publicized sexually transmitted disease (STD), is caused by a bacteria. Approximately 75% of women and 50% of men with the infection have no symptoms, so most people infected with chlamydia are not aware of their infections and therefore may not seek health care. When diagnosed, chlamydia can be easily treated and cured. Chlamydia is also common among young men, who are seldom offered screening. Untreated chlamydia in men typically causes urethral infection, but may also result in complications such as swollen and tender testicles
Genital warts is one of the lesser known and yet one of the most common STD’s. An estimated 40 million Americans are infected with HPV, with 1 million new cases each year. Most HPV infections are subclinical–that means that there are no visible signs. Visible signs include soft, pink, cauliflower-like warts to hard, smooth, yellow-gray warts. In women, they may develop inside the vagina, where they are hard to detect. They may also appear on the lips of the vagina or around the anus. In men, they usually appear on the penis, but are sometimes found on the scrotum or around the anus. These signs appear within 3 weeks to 6 months after having sex with someone who is infected. This time period makes it difficult to track the infection as it is passed from partner to partner.
Hepatitis B is an infection of the liver caused by a virus. It’s 100 times more infectious than HIV. About 300,000 Americans get hepatitis B each year. Most people recover, but a few become chronic carriers with increased risk of serious health problems later, such as permanent liver disease and cancer of the liver.
Genital herpes is a chronic, lifelong viral infection. Again, an estimated 40 million people have it. Each year, about 500,000 new people get symptomatic herpes. Most people have no noticeable symptoms. Those who do probably notice them 2 to 20 days after having sex with someone who is infected. Early symptoms may include a burning sensation in the genitals, lower back pain, pain when urinating, and flu-like symptoms. A few days later, small red bumps may appear in the genital area. Later, these bumps can develop into painful blisters, which then crust over, form a scab, and heal.
Pubic lice (often called “crabs”) and Scabies (itch mites) are tiny insects that live on the skin which are sometimes spread sexually, but can also be picked up by using the same bed linen, clothes, or towels as an infected person. Scabies, an itchy rash, is the result of a female mite burrowing into a person’s skin to lay her eggs. Pubic lice infect hairy parts of the body, especially around the groin and under the arms. Their eggs can be seen on the hair close to the skin, where they hatch in 5 to 10 days.
Trichomoniasis (“trich”), attacks 2 to 3 million Americans every year. Many people experience no symptoms. Women may experience itching, burning, vaginal or vulval redness, unusual vaginal discharge, frequent and/or painful urination, discomfort during intercourse, and abdominal pain. Symptoms tend to worsen after menstruation. Men are usually asymptomatic, but symptoms can include unusual penile discharge, painful urination, and tingling inside the penis.
“There are now sufficient recent studies to document high HIV seroprevalence rates among some groups of male-to-female (MTF) transgender persons in the United States… rates appear to be especially high among African American MTF transgender persons.” (p. 184)
The Companion Document reports that there are now “sufficient recent studies to document high HIV seroprevalence rates among some groups of male-to-female (MTF) transgender persons in the United States. Seroprevalence rates ranging from 22 to 47 percent have been documented within urban subpopulations of MTF transgender individuals across the United States.25, 26, 27, 28, 29 HIV seroprevalence rates appear to be especially high among African American MTF transgender persons.”30,31
As with STDs, even though studies show high levels of HIV infection and high-risk sexual behavior among MtoF transgender individuals, prevention needs continue to go largely unaddressed. Very little is also known about the HIV risks for female-to-male (FTM) transgender individuals, who constitute a largely invisible population with regard to sexual risk behaviors.32, 33 In a recent policy statement, the American Public Health Association urged that both MTF and FTM transgender individuals should be recognized by research and health care communities as populations whose needs are unique and distinct from those of gay men and lesbians.34
Other Transgender Health Issues
More research is needed, but “small surveys suggest that successful communication and ease of sexual orientation (and gender) disclosure may positively affect health risks and screenings.” (p. 129)
Lack Of Disclosure
The Companion Report pointed to the importance of disclosing one’s sexual orientation to a health care provider, saying it “is crucial to the provision of appropriate and sensitive care that is tailored and responsive to each individual’s unique needs.” The same can also be said of disclosing one’s gender identity. Like everyone else, medical professionals classify their patients as male or female solely on the basis of physical characteristics. But if, as the report states, a “failure to establish rapport and communication between physicians and patients is associated with decreased levels of adherence to physician advice and treatment plans, and decreased rates of satisfaction,” 35 when it comes to sexual orientation, then the same will hold true for gender identity.
If a clinician is not aware of a patient’s gender identity, he or she may fail to accurately diagnose, treat, or recommend appropriate preventive measures for a range of conditions. A 1997 study of lesbians in Oregon,136 showed that “90 percent disclosed their sexual orientation to providers, and of these, 92 percent raised the issue themselves.”37 How many transgendered persons, apart from pre- and post-operative transsexuals, are as likely to disclose their status? Until such time as the transgendered are open (or even better, proud) and willing to share this information with medical professionals errors in diagnosis and treatment will continue to occur.
Uninsured levels are highest among transgendered people. A 1997 survey in San Francisco found that 52 percent of the almost 400 transgender individuals surveyed lacked health insurance,38 while the Washington Transgender Needs Assessment Survey, conducted between 1998 and 2000, found that 47 percent of respondents lacked health insurance.39 A December 1999 survey by the New York City Department of Health found that 21 percent of transgendered respondents reported having no health insurance of any kind. Within these transgender communities, people of color are likely to be disproportionately uninsured—a finding that mirrors statistics on people of color throughout the Nation.40,41
“Lesser” Health Problems
In addition to the areas cited above, there are a number of less obvious circumstances which present health problems for the transgendered, most especially those who are closeted. For example, allergies, that can often develop later in life, and infections caused by transgender related practices.
If a physician or other health care professional is unaware that a patient is transgendered, he or she may not think to include it in the diagnosis. The transgendered can experience an allergic reaction and may not realize it’s the result of new make-up or a hair (wig) spray. And since the M.D. is unaware of the individual’s status, he or she is not likely to ask what sort of makeup the patient uses.
Similarly, there may be problems like nail infections, resulting from the use of false nail glue, and eye infections caused by false lashes or mascara, as well as ingrown hairs from improperly shaven legs or injuries from high heeled shoes and corsets. To some these may seem comical, but to the transgendered person, who must invent an explanation because he’s too embarrassed to inform his doctor, they are another illustration of the injury caused by being in the closet. And these kind of health problems, though they may seem minor at first, can have serious consequences if not properly addressed.
What to Do
As an individual, the need for full disclosure us essential. The transgendered person’s physician should know the entire patient. And the patient should be assured of confidentiality. On the public front, the LGBT Companion Document, issued as part of the Federal Government’s Healthy People 2010 initiative, effectively points out the need for extensive and thorough research into the health care needs of the transgendered. The document also contains many invaluable recommendations on a variety of fronts.
- Medical Boards and other groups that license or certify health care professionals should ensure that their examinations include questions on health care for the transgendered.
- Academic departments of health should encourage, if not require, an internship or a rotation at a community center or health center that includes service to LGBT people.
- Home care agencies should be trained to be culturally sensitive and respectful of transgendered elders. Medical Boards and other groups that license or certify health care professionals should ensure that their examinations include questions on health care for the transgendered.
- Health care providers of all disciplines should be provided with education and training on how to communicate with transgendered consumers and families in a culturally competent way and how to reduce barriers to effective communication.
- Health insurance companies should extend coverage to include transgender issues and remove barriers to the transgendered obtaining coverage.
- Workers in alcohol and drug abuse programs should be trained in understanding the needs of their transgendered clients and made aware of the relationship between gender issues and addiction.
With so much to do, one may wonder where to begin. At this stage of the situation the answer is clear: start anywhere…but start now. And the best place to begin as an individual is with your own doctor. One by one, if we educate the members of the medical profession and make them sensitive to our unique needs, we can look forward to a document titled Healthy Transgendered People 2010.
Special thanks to Moonhawk River Stone, a psychotherapist, consultant, and educator in private practice in the Albany, New York area and an out, open and proud FtoM, who provided invaluable input and feedback for this article. All introductory and unattributed quotes come from the LGBT Health Issues Companion Document, issued in the fall of 2000 as part of the Federal Government’s HEALTHY PEOPLE 2010 initiative.
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