Being HIV-positive is not an easy life. What happens if you add RA to the mix? How does your HIV status impact your RA treatment? I recently interviewed my friend Mary Turner from Charleston, S.C., who’s lived with HIV since the late 1980s.
Mary is one of the longer survivors of HIV. “I was infected in 1985 when I was living in New York City.” This was in an age where HIV was only found in gay men and drug users. At that time women’s biggest worry about being sexually active was unwanted pregnancy. For most, birth-control pills took care of that concern — condoms were unnecessary. In the late 1980s, however, that changed when women began to get HIV. Mary got a diagnosis of being HIV-positive in 1988 and says that doctors “believed I was one of the first five or ten upscale, professional women in New York infected with HIV who was not an injecting drug user.”
Life with HIV
“I have had AIDS lots of times,” Mary says. Initially, full-blown AIDS was determined to occur when a person had a T-cell count of less than 200 and one or more AIDS-defined illnesses. Over the years, Mary has been close to death many times. Throughout, she and her family have coped with a trademark New York sense of humor — she tells the story of the year her father joked that “it was my 10th annual last Christmas.”
As new, more effective medications were developed, Mary achieved a better control of her HIV status. At present, her T cells are 900 (normal), and her viral load is negligible. Despite this, she cautions against what she feels is the current apathy towards the disease, seeing it as “just another chronic illness. It’s not fixed, it’s a long-term thing. The drugs are keeping me alive, but they take their toll. It is a shitty life in a lot of ways.”
RA and HIV
Mary began showing symptoms of RA in 2005 and was diagnosed in 2007. She started methotrexate, but when it failed to work, her then-rheumatologist suggested Enbrel. Given her HIV, Mary was hesitant to start an immunosuppressant, but “the rheumatologist said she had several patients with HIV who were doing well on it.”
Shortly after starting Enbrel, Mary began to experience “weird, cognitive symptoms. I was forgetful, I couldn’t see. The day I woke up in a ditch after crashing my car, I stopped Enbrel.” After an intense medical investigation, it was determined that she had a lot of white matter in her brain. “I had Epstein-Barr virus in my spinal fluid and brain. Everyone has this virus in our bodies, but it normally doesn’t cross the blood brain barrier.” It appears that the interaction between HIV and Enbrel changed this for Mary. “I had seizures, psychosis, I was hallucinating and my friends created a schedule of being with me around the clock, because I couldn’t be left alone.” She was admitted to hospital there and put on antipsychotic medication. "I had been in the hospital for one month [when I] became conscious again. I slowly regained my sense of self and realized that I’d been crazy.” She is still taking the antipsychotic medication and expects to do so for the rest of her life. “It was the worst illness. I’ve suffered of all my illnesses. Being mentally ill wrecks who you are, your identity.”
Mary is still struggling with aftereffects from what she calls her “brain funk” and has a tendency to fall. In addition, six months ago she was diagnosed with a benign brain tumor near the pituitary gland. However, she is currently in remission from RA and not on any drugs for that condition except narcotics for pain control, as well as her HIV medication. “I still have bad days, I’m sensitive to damp,” she says. Should RA ever become active again, she will not take immunosuppressant drugs. “HIV is my number one problem in terms of survival, RA is my number one problem in terms of pain.” She chooses survival over pain.
Living with HIV has taught Mary to “care less about the little things. To live in the moment and enjoy life.” She leaves as active a life as possible, spending time with her family and friends. She stays physically active, saying “motion is lotion.” Mary walks every day with her dog Ginger and rides horses when she can. She also occasionally does advocacy work for HIV. “I spent 10 years working as an advocate for safe sex education, talking to youth, but reached a point where"I was too old to connect with them. I’m still available, if needed.”
After 25 years of living with HIV and now RA, Mary has developed a life philosophy. “I choose joy. The alternative is self-indulgent misery,” she says bluntly. She doesn’t think about death. “It’s part of being alive.”
HIV facts (2008 and 2009):
- men who have sex with men accounted for 61% of people infected with HIV
- heterosexual contact accounted for 27% of people infected with HIV
- women accounted for 27% of new HIV transmission and one quarter of people living with HIV
- injection drug users accounted for 9% of annual new HIV transmissions and 17% of people living with HIV
June 27 is National HIV Testing Day. Take the test. Take control.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.