An Amish Paradox

by Charles E. Hurst

  Inside the Mammo Van, which travels around the Amish community, women can be screened for breast cancer and men can receive prostate tests. Photograph courtesy of MammoVan, a division of Medical Imaging Network Inc., Boardman, Ohio.

  Among the genetic diseases found in higher rates among the Amish in general are cystic fibrosis, glutaric aciduria (an enzyme deficiency potentially resulting in brain damage and movement disorder), Crigler-Najjar Syndrome (a result of bilirubin accumulation in the body and creating brain or other organ damage), Ellis-van Creveld Syndrome (a form of dwarfism), nemaline myopathy (a neuromuscular disorder characterized by muscle weakness), and maple syrup urine disease (a protein-related enzyme deficiency). Because of recent changes in the state law that require families to go on Medicaid if their children have high and continuing medical expenses due to birth defects (for example, cystic fibrosis and blood-clotting disorders), a group of Holmes County Amish have initiated the new Ohio Crippled Children’s Fund to be run and endowed by the Amish themselves.16 The fund helps them avoid going on Medicaid.

  Some disorders are not evenly distributed among the Amish population but appear to be clustered in particular families or communities. These include Alzheimer’s disease and hemophilia B, the latter being often found in the Holmes County Settlement.17 The Amish in the Holmes County Settlement also have the nation’s highest rate of a rare type of hemophilia caused by deficient production of a blood-clotting factor.18 Brittle Hair Syndrome is also found in unusual numbers among the Holmes County Amish; the rate of Ellis-van Creveld Syndrome is very high among the Lancaster, Pennsylvania, Amish.19

  When possible, the Amish avoid treatments and care that require involvement in governmental programs. Separate clinics have been established for Amish children who have the diseases mentioned above. The Clinic for Special Children, in Strasburg, Pennsylvania, and the Das Deutsch Center for Special Needs Children (DDC), in Middlefield, Ohio, focus on the diagnosis and treatment of these genetic diseases. The medical director of the DDC says that clinic has encountered more than fifty different genetic diseases that afflict especially the Amish. He noted that the Amish are more accepting of disease than the English, especially diseases about which little can be done, for example, retardation. Because the medical relationship has to do with vital matters and, in this case, involves individuals with different cultural backgrounds, the nurturing of trust is especially important. The Chinese American medical director at the DDC has gained the trust of the Amish by opening an outreach clinic in Holmes County, spending more time than average with his patients, and even making house calls when needed. He has also formed support groups for families of individuals with particular diseases. Members of the Geauga Amish community are deeply committed to the DDC. They helped raise funds for its creation and participated in the selection of the present director. Amish men also currently serve on the DDC’s Board of Directors. And the local Amish population provides significant funding for the continued operation of the clinic.

  To further advance the understanding and treatment of genetic diseases among groups with Anabaptist heritage, the Windows of Hope Project was launched in 2000 as an international effort to provide accessible and clear information on the genetics, variety, diagnosis, and treatment of inherited diseases among Anabaptists. The project has been operating in Holmes County since that year and offers a Web site where individuals can find a list and descriptions of genetic disorders that occur in the Plain community. To help facilitate and coordinate understanding and treatment of these diseases, the Holmes County Settlement has established the Windows of Hope Genetics Information Center in Walnut Creek, Ohio.

  Early diagnosis of serious treatable diseases is important for their effective treatment. While the genetic diseases mentioned above can be detected early in children, other, more common health problems can also be detected when Amish adults engage in preventive care. Yet, as mentioned, most Amish adults do not do so. A major reason relates to the Amish definition of good “health”: “Good appetite. Good work. Then you’re healthy.” If a person feels okay, can work, and has a hearty appetite, he or she is generally considered healthy, and the Amish see no reason for such a person to go to a physician or other health care provider. A local physician told us that Amish acquaintances often say they do not have to go to the doctor “if nothing is hurting, and I have a good appetite, and the bowels work.” In the absence of overt, debilitating symptoms, one is expected to work. In comparison with the English neighbors of the Amish, this perspective on health appears to most closely mirror the attitudes held by English men rather than English women.

  One of the most stigmatizing labels that can be placed on an Amish person is that he or she is considered lazy. Keeping busy and doing the chores necessary to maintain one’s family is central to the Amish way of life. Taking time out to see a doctor for no apparent health problem is judged unnecessary and, among some Amish, a waste of time. Time is not to be wasted.

  Lifestyle and Health

  The Amish lifestyle has significant implications for Amish health. If a family lives and works on a farm, positive effects follow from the physical exercise (for example, lower obesity rates), organic food, and early-to-bed, early-to-rise schedule associated with farm life.20 The farm lifestyle also helps to keep members of the family in close proximity to each other and thus can help maintain the solidarity of the family. But as one Amish bishop observed, “Working with farm machines and horses can be dangerous.” Another Amish man mentioned farming and carpentry as leading “the list of injuries.” Some doctors, noting the greater frequency of farming and wood-chopping accidents among the Amish, have also observed that “farming is a high-risk occupation.”

  The kinds of accidents, injuries, and stresses experienced by the Amish become more diverse as an increasing proportion of some groups take up occupations other than farming. The rates of change in employment are noticeably higher among the New Order and Old Order Amish than within the Swartzentruber branch, since the latter have fewer acceptable occupational options and are more likely to doggedly cling to farming. Variations in lifestyle are bound up with variations in the specifics of values, church rules, and adherence to tradition found among the Amish. Consequently, the forms and intensity of work-related mental stresses the Amish encounter will likely also continue to change and vary among them. Because of the great heterogeneity of the Holmes County Amish, it might be expected that these shifts will be especially significant among them.

  Like men in general, Amish men tend to go to a physician less often and later in life than women do. In his practice of more than thirty-five years, one M.D. found that, unless there is an emergency, “You don’t see many men in the office until they’re about 55 years old. From then on, the men come in because they’ve worked hard. They’ve got backaches; they’ve got arthritis. They have abused themselves from physical labor … So then they start slowing down and they get less physical activity. [The men and the women] start gaining some weight, they get hypertension, diabetes, and so from 60 on up they have the same problems as everyone else does … There isn’t much difference where you start and where you end. The in-between is different.”

  The constant hard physical work associated with the Amish lifestyle can take its toll on women as well as men. The high number of births can itself create challenges. In addition, hard work over the years creates specific problems for many Amish women. Heavy lifting of wet clothes to hang them outdoors can foster prolapse issues and leg problems. Varicose veins are a “huge issue” among Amish women. The use of ringer washers leads to accidents. Among the Swartzentruber Amish, the lack of indoor plumbing requires carrying water in from outside, a task that discourages frequent bathing and results in hygiene problems.

  Diet is another element that affects Amish health. Like the non-Amish population, some Amish are very conscious of what they eat, while others are not. One older, semiretired New Order Amish couple, for example, told us that when they were younger and more phys
ically active, they ate large breakfasts and dinners. Now, however, breakfast typically consists of dry toast, a banana, water with vinegar, and a vitamin. There is less use of lard, pork is eaten less frequently, and the wife bakes fewer desserts. More typically, observed a local doctor, especially among Old Order and Swartzentruber Amish, “as a general rule, … they like their pork and beef and those kinds of things. A lot of starch. So the diets aren’t very good, and that’s one of the difficult things … to try and change … when they have cholesterol trouble or diabetes.” Their diet is also high in sugar and fat. The movement away from farming into nonagricultural enterprises and wage labor has possibly accelerated these dietary developments and exacerbated their health consequences as Amish individuals eat out at restaurants more often than in the past and purchase more of their foods, relying less on their own farms and gardens for sustenance. The result is the introduction of more additives, preservatives, and processing into their foods.21

  Although the typical Amish diet may not have as drastic a set of consequences for the young, its health implications grow as one ages: “When they get up to about 50 and start to slow down then they develop diabetes … they are semi-retired … still eating well and start to put on weight.” Offsetting the problems that might be associated with diet are the relatively low rates of tobacco and alcohol use among the Holmes County Settlement Amish. In comparison to the non-Amish, a greater percentage of these people have never smoked a cigarette, chewed tobacco, or drunk alcohol. Moreover, they are more likely than others to take dietary supplements of some kind.22

  The values that Amish hold dear are deeply embedded in their decisions about health care. In reflecting upon lessons from his own Amish childhood, a doctor concluded that one of the most significant messages from Amish culture is for all of us “to be mindful of people around us … Help neighbors in need, be mindful of what effect your actions will have on somebody else.” One manifestation of the sensitivity of the Amish to the larger community is their generous donation of blood to the Red Cross. Self-effacement and sensitivity to others also become important in health care when high costs cause a clash between a sick individual’s expensive regimen and the needs of the family. If a case is complicated and involves unknown numbers of tests and procedures, and the patient believes it is unlikely that treatment will be successful, the person will often say something like “[My husband and I have] thought about this, and we’ve lived a good life, and just give me some pills and I’ll do the best I can. I’m not interested in starting that procedure.” This sort of decision reflects the belief that little can be done to fully restore one’s health, the acceptance of things as they are, and the concern for others found so frequently among the Amish.

  Decisions are never straightforward, however. The tensions between individual and community needs created by high costs of complex, unusual, and occasionally unsuccessful medical treatments foster long-term difficulties for cohesion within the Amish community. Individuals make their own medical decisions about care, but it is the community, supporting its members, that provides most of the payment for high medical bills. Although the community spirit is laudable, these costs result in debt and drain funds that would have been available to address other community needs.23 Moreover, if those who are ill and poor are unable to contribute to church aid, especially as community health costs increase, they may take on an emotional burden and may be forced to accept governmental aid (for example, Medicaid), both of which can threaten long-term cohesion within the community. There can be little doubt that as health care costs rise, so will the intensity of these dilemmas. One form of adaptation to such pressures has been the acceptance by some bishops of commercial health insurance for Amish people who work for English employers.

  Alternative Medicine

  Often when Amish individuals get sick, they try home remedies and herbs before they seek out a health care professional. More than half of the individuals in our survey of sixty-five Old Order and New Order Amish said that, during an average year, about half of their treatments for health come from home remedies. Part of the reason lies with the generally lower costs of such remedies and the belief that such approaches are more “natural.” But another part of the reason is philosophy; “I’ve had ladies bring in bags of herbs that cost hundreds of dollars,” observed one physician, “where the medications would not have cost as much. But they’ll believe what they’re told as far as how these things are going to work.”

  In addition, knowing someone in the close community who appears to have been helped by a remedy encourages others to try it. Word of mouth can spread quickly and means a lot when it comes to trying remedies. Advice is especially likely to be followed if it comes from an elder, says another professional: “One big thing about the Amish people is that they really respect their elders … Even if they’re losing some of their mental capacity, they still respect them. And what they say has a lot more weight than the doctor.” As one author who was raised Amish put it, “We believe wisdom is in the ages; most North Americans believe progress is in the new.”24

  Included among the oft-mentioned traditional remedies are kerosene, used as a disinfectant and pain reducer, and various homemade salves and liniments for application to injuries. Dr. Elton Lehman, in the published reminiscences of his more than forty years as a well-known osteopathic physician to Amish families in Mount Eaton, Ohio, relates an incident from early in his career: A farm boy had come in because he had torn his hand on a hay hook. Smelling something, the doctor asked the father what the boy had put on his hand. “Why he soaked his hand in kerosene, of course … It helps the pain and slows the bleeding. Why we always bathe our wounds in kerosene, don’t you?”25 Vitamins, vinegar, colonic cleansing liquids, and teas are also used to maintain health, as are by-products such as yeast and bee pollen. Commenting on the frequent use of health supplements by the Amish, one physician said succinctly: “I’ve always maintained that if you could recover all the vitamins in the urine that Holmes Countians have been marketed, you could retire early.”

  Before seeking help from mainstream physicians, Amish who are in need of treatment often consult alternative care givers or even unlicensed practitioners. The Amish are frequent users of “complementary and alternative medicine,” which includes “mind-body intervention, traditional or folk remedies, special diets or nutrition programs, herbal medicine, manual healing, chemical or pharmacological agents, and bioelectromagnetic applications.”26 Chiropractic is among the alternative approaches that are used extensively. Others are reflexology, which involves manipulation of the feet to relieve stresses and pain in other parts of the body; iridology, in which the practitioner examines the iris to diagnose illness; and chelation therapy, which aims to rid the body of toxic minerals through excretion. A potential danger of medical alternatives lies in the use of unlicensed practitioners. The “worm doctor” was an example given by a few licensed doctors. This local practitioner “basically convinces people, no matter what’s wrong with you—you got a headache, heart problems, and diabetes, whatever—you got a parasite. So they call him a worm doctor. You got a worm … and he happens to have these potions that will kill the worms. From what I hear, he does a bang-up business.”

  Such an approach is persuasive to some people because it suggests clear, concrete, and visually accessible explanations for illness. It provides mental images of diseases and cures that appear straightforward and reasonable. The cause of illness is clearly identified and easy to grasp, and the solution appears to make common sense. Sometimes analogies serve as explanations, as when a local care giver tried to explain why a patient has to take high-blood-pressure pills over a period of time and not stop when the patient starts feeling better: “When the fish pulls the bobber under the water it will stay under as long as the fish is staying under, but if he lets go, it’s going to come right back up. Your blood pressure is going to come right back up when you stop the pills.’ You have to make analogies so they understand sometimes.” M
any Amish like to fish, so this analogy allows them to easily visualize the issue.

  There are many traditional beliefs about cures and manners of diagnosis, most of which are more common among the more conservative Amish. Among them is the belief that one can draw out pain from another with the use of the hands. It is believed that there is a connection between the person ministering and the person suffering. A local chiropractor gave an example of this interpersonal sympathy. He had met with an Old Order mother who had a baby suffering from excess gas. In explaining to the doctor how the baby was cured, the mother said “the other night he was crying really hard, so I just had him close to me, and I passed gas, and then he felt better.”

  The sympathetic connection between the mother and the child in that case is also found in powwowing (brauche in Pennsylvania Dutch). This pattern is characteristic of “sympathy healing,” in which the practitioner recites a chant or sacred words or uses charms or other mysterious rituals to treat the patient. Patients may be suffering from physical or spiritual illnesses; powwowing has been used to remove curses and hexes as well. Some consider the basic ability of the braucher to be innate, a gift of God, but the secret techniques of the practitioner are in most cases learned from a person of the opposite sex. The secrets and recipes of powwowing/brauche are generally passed on by word of mouth rather than documented in formal texts. Powwowing, though controversial for some Amish, shows no signs of completely disappearing because of the increasing cost of mainstream medicine, the rise in acceptance of alternative medicine, and the continued belief by some in the reality of curses and hexes.27 Sometimes brauche or powwowing is combined with a more professional medical approach, as in the case of Emanuel Stoltzfus, who combined brauche and chiropractic. In this way, Stoltzfus straddled folk and modern medicine.28