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Book helps give a voice to those coping with HIV/AIDS |
| By
Jim Winkler |
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Jan 17, 2007 |
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Ten years ago Maria was diagnosed with HIV infection — a loyal wife who had gotten the virus from an unfaithful husband.
After receiving treatment and being hospitalized, she slowly regained some of her lost mobility and strength. And she divorced her husband.
But she knows the infection remains, and today regularly participates in a support group for people with HIV.
“The strangest things about it all are that if I hadn’t gotten sick, I probably wouldn’t have found the courage to end the marriage and get away from my husband,” she recalled. “He was a real charmer, a smooth talker, and I fell for him. He was very controlling and he was physically and emotionally abusive to me … It took the trauma of getting AIDS to give me the strength to do what was best for the both of us and divorce him.”
Maria is one of more than 30 northwest Ohioans living with HIV/AIDS who have come forward to tell their stories in a new, 144-page book, Dear Friend, Wise Words and Shared Journeys of People Living With HIV.
In their own words, patients, many of whom attend several support groups for HIV/AIDS patients on the Health Science Campus, describe the physical and psychosocial dilemmas that HIV has forced them to face and provide insights into what it’s like to receive an HIV diagnosis, to carry the burden of dealing with family and friends, and to struggle to find a way to live.
The book is the brainchild of Susan Carter, the social worker for the Ryan White-funded HIV care program on the Health Science Campus. The program is named in honor of White, whose high-profile battle against AIDS captured the attention of the world. White, who was treated for his disease at an Indiana hospital, died in 1990.
For both Carter and Ann Locher, HIV clinical nurse specialist, the book is an avenue for newly identified HIV patients to learn about shared emotional experiences and help them come to grips with their diagnosis and their experience. The stories put a face on an illness that often seems foreign and strange, and they provide a message of hope, describe how patients overcame their fears to find out their HIV status and went on to discover ways to live positively, and help others to understand that HIV infection is not the end of one’s life.
Even though people with AIDS today live longer thanks to new drug treatments and are more willing to talk about their disease, there is still a stigma surrounding the disease, and many people live in isolation and loneliness.
Locher said she hopes the book will be “a bridge that will lead some people to participate in support groups and some simply to be comforted with the empathy of the ‘strangers’ who have taken the time to tell their stories in letter form.”
She added, “The Dear Friends project is an attempt to provide a basis of connection for newly diagnosed or long-term patients who are isolated from sharing their HIV status.”
The former Medical College of Ohio was the first anonymous HIV testing site for people in northwest Ohio, and today it is recognized as a center for excellence to provide care for people with HIV. Last year, the program observed its 21st anniversary of operation.
Both HIV experts think that reading the stories and the writing process itself can be beneficial in helping patients develop insights and come to terms with their illness.
Interestingly, Carter pointed out, studies have shown that HIV-infected patients who share their thoughts and emotions report less stress and may have improved immune responses.
The book costs $10 and proceeds go to the Family-Centered HIV Clinic Fund administered by the Medical University of Ohio Foundation. The price offsets the costs of providing copies to patients attending the UT Medical Center Ryan White Clinic. Books can be purchased by contacting Carter in Health Education Building Room 115 on the Health Science Campus at 419.383.3913 or through the Health Science Campus Bookstore.
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