Undefined by a disease

By Gina Farthing

Published: November 29, 2008

Editor’s note: Some names have been changed to protect the identities of those living with HIV.

Mary and John live in Virginia. They are married and have children from Mary’s first marriage. Mary works in an office.

Mary and John have HIV.

Monday marks the 20th anniversary of world recognition of the AIDS epidemic. Today the disease is considered a pandemic that has touched six of seven world continents. AIDS is still a nameless and faceless disease because of the stigma surrounding it.

HIV stands for human immunodeficiency virus. It attacks cells of the human immune system and destroys their ability to function. AIDS, acquired immunodeficiency syndrome, is the set of opportunistic diseases that attack the human body after the HIV virus weakens the immune system.

“I have HIV. I ... am not HIV,” Mary says.

Going in with eyes wide open

Mary, a friendly, outgoing and vivacious person who easily displays her sense of humor, was diagnosed in 1996.

“I was dating my boyfriend; he was my soul mate and later became my husband,” she says. “John had been diagnosed with HIV in 1987, so I was testing every six months. He was always up front with me about it.

“I was a partier back then. You don’t make rational decisions when you’ve been drinking or doing drugs.”

Mary says that when she first was diagnosed, it was all she could think about. Her children were small and she was frightened that she might pass it to them. Education alleviated her fear.

“AIDS cannot survive outside the host,” says Tony Sierra, director of client services at Valley AIDS Network, an affiliate of the Institute for Innovation in Health and Human Services at James Madison University. “It is an education issue and an awareness issue.”

“HIV was never in their minds when [people] engaged in certain behaviors,” says Shannon Porter, VAN executive director. “Still today, it’s not discussed or taught. We had a patient who said her boyfriend didn’t even know what HIV and AIDS stood for – and they attend large, private schools.”

Safety concerns for her children assuaged, Mary turned her thoughts to a reexamination of her life.

“You think about things like, ‘Where do I want to go from here; where can I go; who am I and what do I want out of life?’ ” Mary says. “I probably thought about those things earlier than I might have had I not been diagnosed.

“It’s a lot different than when you have cancer.”

Rumors abounded and Mary had inklings one of her children, a daughter, was getting the brunt of it at school. Luckily, Mary and John had already had a heart-to-heart with their children when they reached an appropriate age.

“We always tried to be honest with the kids,” she says. “John is long-term and it helped them understand, though we did try to lessen the impact on them.”

Mary’s daughter never told her about it, although Mary eventually learned that her daughter did in fact have to deal with the stigma of her mother’s disease.

“She had to deal with stuff. If it was cancer, she wouldn’t have had to deal with it,” Mary says.

At Mary’s job, when she was applying for health benefits, she had to fill out a questionnaire. She worried, “Would the [human resources] rep keep her mouth shut?”

“I don’t think anyone knows, but it’s a small [world] and I think, ‘Did she keep her mouth closed?’ I always wonder. Especially when I get the feeling that people at work are avoiding getting close to me.”

Mary and her daughter had some rough times during the girl’s teen years. During one incident, Mary says, the girl was so mad at her mother that she divulged her mother’s condition to her biological father. It could have caused problems until the biological father’s attorney told him that Mary could not lose custody for merely having HIV.

The children are used to their parents’ medical conditions now, she says. Especially since John’s health took a turn for the worse. She says doctors told them that he would not last much longer. That was nine years ago.

Mary and John are part of growing number of HIV patients who have been living with the disease on a long-term basis.

Living with the disease

When HIV/AIDS was discovered in the 1980s, patients diagnosed with the disease often lived no more than six months. With developments in medical treatment, patients are now living much longer.

“It’s not an automatic death sentence any longer,” says Sierra. “It’s become a chronic, manageable disease no different than diabetes or hypertension. As long as there is adherance to the doctor’s instructions, people can expect a normal life span.”

Today, Mary and John are the grandparents of grandchild. Mary is attending college classes in her spare time and, until recently, the couple would just pick themselves up, get in the car and drive.

“We’d pick a direction and just go,” Mary says. “My kids looked at us like we were old hippies.

“When you have an illness like this, it brings life into better focus. Retirement might not be there. So you just have to live your life now. I’m basically a happy person.”

But John’s health is deteriorating again.

John is in an almost constant state of exhaustion, Mary says. He’s begun to experience dementia and personality changes. The condition of his liver is constantly monitored due to the hepatitis C he contracted from his former drug use and his medications are bringing on side effects not anticipated when they were originally prescribed. He has to take additional meds to combat those additional symptoms of his degenerating health. Then there is the depression.

John had to quit his work as an electrician. His exhaustion prevents him from getting out into the world much any more. And with Mary working and the children gone, John is living in a state of isolation.

“But he does love that grandbaby,” Mary says of John, who also tends the newly-diagnosed, diabetic dog. John gives him his shots every 12 hours.

“It kind of scares me ... ” Mary stops for a moment. Her eyes fill with tears and she gulps hard. Mary’s brave exterior starts to break down.

Nine years ago Mary had tried to return to school prior to John’s near-death episode, but had to stop and tend to her husband’s health.

She’s afraid that with this current attempt at school and John’s resurgence of ills, are a sign.

“I wonder if I’m going to need something for me. I have a horrible feeling ... .” She swallows hard.

“I’m going to lose him … in a couple of years,” she sobs.

She gulps hard again, takes a tissue sitting nearby and wipes her tears.

“I think, “How can I go on? You’re the caretaker. Where am I going to be in 10 years?” she says.

How the future looks

Porter says that most diseases have documented track records, but not so with AIDS since its only been around for 20 years.

“We don’t know what the future will bring,” he says. “The character of the disease has changed. The death rates that captured national attention are not as dramatic today because people are living longer. They think it’s not as dangerous, but really, it’s more dangerous now.”

Porter says that because of modern technology and its myriad drug treatments, people are taking more chances and the education level of the public on the subject is evaporating.

“We’re raising people who don’t have the knowledge about how it is contracted. People figure they’ll figure it later, and oftentimes that knowledge comes in the form of a diagnosis,” he says.

“We, as a society, choose not to talk to kids about these subjects,” he continues.

“It’s a wholly preventable disease. But education is key. People need to protect themselves. They need to practice safe sex and get tested. Even in a monogamous relationship.

“We have clients who were in long-term monogamous relationships and one partner strayed. Now they’ve got HIV,” Porter says.

Porter and Sierra stress the importance of negating the public’s assumptions about the disease. Both state that people assume they know what HIV looks like, who might have it and what they know about it. The image of actor Tom Hanks in the 1993 movie “Philadelpia” is no longer the stereotypical “look” of HIV/AIDS, they say, referring to his extensive emaciation and visible lesions.

VAN lost three of its clients in the last year.

“It could be anyone,” says Porter. “It could be a member of your family, a work colleague, the person who served you breakfast this morning. People are always assuming because I work here, I’m gay or infected,” he says.

There is a dangerous lack of awareness and proactivity on the part of the medical community, say VAN’s administrators. Doctors often do not want to offend clients by suggesting tests, even in the face of overwhelming symptoms. Doctors make assumptions, too, regarding clients who are in monogamous relationships. And some in the medical field don’t come into personal contact with the disease. Sierra and Porter both say that women, who make up 42 percent of their clientele, often don’t find out they have the disease until they become pregnant.

Mary’s doctor told her that she was his first HIV patient.

But that doesn’t make her leery of him.

“He checks and double-checks everything, even medicines that he prescribes for other conditions,” she says. She recently found out that she has high cholesterol, something her dad had but also something which, is worsened by her HIV meds.

“Too many people pass their health off on the medical field,” Porter says. “You are responsible for your own health. Learn how to be a good consumer of health care and don’t have unrealistic expectations of doctors that are seeing 30 patients in a day.”

Where to turn for help

VAN provides many different types of services to clients in Rockingham County (including Harrisonburg), Augusta County (including Waynesboro and Staunton), Rockbridge County (including Lexington and Buena Vista), Bath County, Highland County, southern Shenandoah County and western Page County. It provides testing, community resources, psychosocial and nutritional support, case management, co-payment assistance for medications and helps low income patients with utilities and rent. It even manages its own food bank with the assistance of the Blue Ridge Area Food Bank.

HIPAA, the Health Insurance Portability and Accountability Act of 1996, is strictly adhered to within the office. All files are coded to protect confidentiality and files are kept under lock and key, as are the offices themselves.

Sierra, who has helped write the Virginia state standard for HIV case management, says, “We trying to cure misperception here.”

“Ignorance and lack of information run deep in families here,” says Porter. “For some people, their lives just began when they were diagnosed.”

“There is hope,” says Sierra. “It makes us more compassionate. It causes us to find our humanity.”

Mary agrees, saying every life on Earth has good and bad in it. But with HIV/AIDS, education is important to avoid contracting it.

“You end up feeling like Typhoid Mary,” she says.

“There’s no reason to freak out. We’re not monsters.”