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msJAMA
October 4, 2000

Against the Grain: Living With the Human Immunodeficiency Virus in Rural South Dakota

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JAMA. 2000;284(13):1706-1707. doi:10.1001/jama.284.13.1706-JMS1004-4-1

Where I am is a place that does not readily render its secrets or subtleties . . . Where I am is a place where the human fabric is worn thin, farms and ranches and little towns scattered over miles of seemingly endless, empty grassland.—Kathleen Norris, Dakota: A Spiritual Journey

Leaving the highway, one drives onto a grassy plateau flecked with purple and yellow coneflowers. The valley below is verdant and ribbons of grasslands, soybean, and corn fields line the two-lane road. Montana claims to be Big Sky Country, but I'd take on any cowboy to tell me that the sky isn't just as wide in this part of the world. Even more so when it brings its fearless winds switching and blustering down the Plains.

I am driving to meet Brenda (not her actual name), who is, and is not, a typical Midwesterner. She has a bold, if sometimes defiant, quality to her eyes, not unlike the stalwart spirit we associate with Midwest pioneers—Laura Ingalls Wilder's homestead is less than 100 miles away. She slaps her hand across her knee for emphasis and her eyebrows light up easily in exclamation. Yet, there is another side to her; she has seen most of the country from the seat of her and her husband's 18-wheeler. She's lived in California for a stint, and 2 of her 3 children live in metropolitan areas.

South Dakota's right-angled physique is cut up neatly into 66 counties, 64 of which are classified as "rural." There's a generosity of geographic expanse here that makes living with HIV/AIDS a portrait in courage. It's safe to say the disease is still often misunderstood in many rural areas and education on HIV and its transmittal is still vital.1 It is also not surprising that rural persons living with HIV and acquired immunodeficiency syndrome (AIDS) report worse life circumstances and significantly lower satisfaction with life than their urban counterparts.2,3 Though in 1999 South Dakota had the fourth lowest number of AIDS cases in the country,4 those who are HIV-positive in a rural setting live with considerably less health infrastructure and have unique psychosocial needs compared to their urban counterparts.5

Practically speaking, one is miles from pharmacies, specialized physicians, and HIV support groups. Brenda travels 340 miles round-trip to see her infectious disease physician. A 1996 study found that 74% of rural HIV-positive persons sought HIV-related care in an urban area due to concerns about confidentiality, the perception that their doctor was not knowledgable enough about HIV, because they were referred to another doctor, and because there wasn't a physician in their county.3 Transportation barriers to that care include poor or impassable road conditions in the long winter months and a lack of public transportation.

Confidentiality concerns are also sources of anxiety among rural HIV-positive individuals and it has been demonstrated that they are less likely to seek care for HIV in their own communities.5 Even now, Brenda drives to a pharmacy 50 miles away rather than the nearest one (15 miles), in part because she doesn't want to draw attention to her status. Though neighbors and shopkeepers are dispersed over larger terrain out here, there is a sometimes aggressive familiarity, an insistent knowing of one's neighbors' affairs. This "informal grapevine community" lays the foundation for actual and perceived discrimination that can cause profound mental and emotional stress.

Increased discrimination, lower social and family well-being, and higher perceptions of loneliness are psychosocial variables that affect HIV-positive persons in rural areas disproportionately and as such can increase psychological burdens.2 These sequelae concern the medical community, given that increases in psychological distress can have the effect of depressing immune function and hastening disease progression.6

On a recent breezy South Dakota afternoon, I had the privilege of speaking with Brenda about some of her concerns and experiences as a rural HIV-positive individual.

How close is your nearest family? Well, my son is in Sioux Falls and that's 170 miles away and my other 2 children are each about 500 miles away.

Do you feel like the medical support that you get is integrated; that is, is it responsive to your physical, mental and emotional health needs? Well, personally, I don't feel like I have any choices. My infectious disease doctor takes care of my physical needs and that's it. I was out in California [a couple of years ago] and it was totally different—there, they treat you psychologically. I felt totally different when I was out there.

Do you think your level of social support would be the same if you had, say, cancer or an illness other than HIV? I think it would be different. I think it would be easier for them [family] if it wasn't HIV, sometimes they kind of avoid the issue. Sometimes they ask my husband, instead of me, how I'm doing. And he always says, "Fine. Fine. Everything's fine." . . . We went to town to see the fireworks [yesterday] and I actually saw a guy changing a baby diaper. And when I was growing up that was . . . [laughter]. The mindset in the Midwest is, I think, a little behind the times.

Could you describe what that "mindset" feels like as an HIV-positive individual? I feel that people in the [rural] Midwest have more tunnel vision in general . . . about a lot of things, say, alcoholism, drugs, abuse, just in general. Prejudice seems more . . . I notice prejudice here more.

Do you think this is reflected in the Midwest as a generalized resistance to change? Yes, diversity or the lack of diversity. Most of the people who live here have lived here all their life. In California or in a metropolitan area there's more diversity of occupations and ethnicity . . . I think there's more tolerance and acceptability. To this day if I go into the cafe in Wilmont . . . everybody knows everybody and they grew up here and went to school here and what have you. I can just feel it. To me, it's more cliquey. You know, you hear about how unfriendly people are in New York or California and I don't find that at all. I find that they are more cliquey in these small rural towns. And I had a misconception, that is, I thought when I moved to the Midwest [27 years ago] that it wouldn't be like this. I had a feeling people were more friendly, more open, and they're not. I don't know if it's because people get the information later or aren't as willing to look at the truth. I think the alcohol problem and the drug problem and the child abuse and wife abuse is very much swept under the carpet here. Why? It shouldn't be.

Have you ever heard a rumor around town about your HIV status? No, I haven't heard anything about myself, but I did hear about someone else. It was at the beauty parlor—it was before I found out I had HIV—there was a young man, and the rumor in the mill around the town was that he wasn't telling girls about his HIV.

Has your sense of spirituality changed since you found out you were HIV positive? It's changed in every way. Initially I was in Alcoholics Anonymous, and part of the AA program is the spiritual. If I had found out about my HIV and had I not been in AA, I probably would not have been able to cope with it. The skills I learned in AA got me through it . . . and just for AA alone, it's hard. They have 1 meeting a week and I had to travel 50 miles [one-way] just to get to the meeting. And I was determined to make it to meetings . . . I found my comfort zone at AA, I found acceptability [with my HIV].

I'm interested in what the isolation feels like out here. What coping mechanisms you employ to keep from feeling lonely? Probably my spirituality has changed me a great deal—it's changed my notions of gratitude. You know, you live one day at a time. I think to myself, "All I have to manage is today." I garden—vegetables and flowers. And I have a mowing business, I mow lawns around here. The distance affects me here though, I can't go to a gym and exercise and I'm sometimes stuck here because of the weather.

Have you considered moving, either closer to your children or to a bigger city? I have considered moving. I considered having to live in the camper. When my stepmother died and we traveled out there [to California], we thought about moving to California . . . but then after having to live in the camper . . . I knew I couldn't do it. I've thought about moving to Minnesota because you can get insurance and there are more HIV programs available, but you have to live there for 6 months and then you have to wait for 6 months before you can get insurance.

People living with HIV/AIDS in a rural setting often have lower perceptions of social support from family members and friends. Who is your main source of support out here? My higher power. It's strange, some of the people I thought would provide the most support aren't around, and the ones I didn't expect it from are some of the most supportive. About a year after I found out I had the disease, I went out [to California] to tell my father and stepmother, and then my stepmother died shortly thereafter. When she died, I went to a support group out there and it felt like a "calling" for me to be there. I saw that there was a different way of being with this disease. Even though people have been supportive in my life here, it's not something that's talked about. When I was out there, it's not, like, a stigma. I can't even say, "Like a stigma,"—there's just not the openness here. I felt more relaxed in that community because I felt like people weren't looking at me. I think it's the willingness to let things in . . . I don't think people want things to change here. I know a lot of people here that have hardly been out of the county . . . I learned more about HIV in the 2 months I was out in California than when I had in the previous 2 years here in South Dakota. When I was out there, I went to an HIV clinic and they sent me to a food bank and they got me in a support group and signed me up with mental care. Whereas here, I've had to dig and scrape and holler and scream and jump up and down in order to find out anything!

I remember in our phone conversation, you said you were surprised at how much better you felt attending the support group in Sioux Falls—even though it is a long drive. Well, that's why I tried to seek that out, I really needed that contact with other people [who have HIV]. When I first contracted HIV everyone was there for me: the Red Cross, the health department. And yet, it seemed like once they knew I wasn't a threat to society, they weren't there.

What advice would you give someone who is in a rural setting dealing with this disease? To educate yourself as much as you can. To reach out to people, which is very difficult for me.

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Article Information
Acknowledgment: The author wishes to graciously acknowledge the support of Fred and Donna van Dis, Carmen Hammond, Robert Talley, and Chuck Kevghas.
References
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