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First Person: Jane Fowler

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By David Evans and Bonnie Goldman

Jane

About Jane

Age: 73
Home: North Kansas City, Mo.
Diagnosed: January 1991
Click here and scroll down to view Jane's HIV medical history and updates!

For Jane Fowler, who describes herself as "the original 1950s good girl," HIV was something that happened to others. She didn't consider herself at risk, so testing positive at the age of 55 was a huge shock. Within months of her diagnosis, she retired from a lifelong career in journalism, becoming reclusive and withdrawn. But Jane is no longer hiding. Recognizing a need for awareness and support for older women affected by HIV, Jane formed HIV Wisdom for Older Women in 2002. The program's primary goal is to raise awareness that HIV infection can and does impact mid-life and older women. The program delivers prevention and outreach presentations nationwide to a diverse variety of audiences, and facilitates life-enrichment workshops for older women living with the virus. Jane considers herself a prevention educator, frequently speaking throughout the country (and several times outside the country) to increase awareness of HIV among the over-50 crowd.

Jane's story has been told, and her work described, on national radio as well as in print publications across the United States. She has also appeared on the Oprah Winfrey Show and other national television programs. An experienced traveler and a seasoned volunteer for many groups, she has a son, Stephen C. Fowler, a freelance writer and book dealer in Toronto, Canada; a grandson, Milo, born in October 2003; and a granddaughter, Matilda, born in March 2006.

Updated July 2008

JANE FOWLER LOVES TO READ about other peoples' lives. For her, heaven is a day spent lounging in her Kansas City apartment on her living room sofa, a juicy biography in hand. A bright yet modest woman, Jane would probably balk at the idea that her own life is a compelling story. At the age of 72, she is a mother, a grandmother, a retired journalist and a speaker of some note. She is also an HIV-positive divorcée.

Many women brought up in the 1940s and '50s, like Jane, were taught that if they played by the rules -- played hard, but fair -- they would be OK. Jane's early years largely confirmed this philosophy. She was a smart and pretty young woman who married an equally intelligent and attractive man. She was blessed with a beautiful and healthy son. In addition to being a mother, she was also an accomplished journalist for The Kansas City Star and Bon Appetit magazine, many years before working moms became commonplace. She lived, by her own definition, a "charmed" life, so nothing prepared Jane for the unexpected changes to come.

"Although Jane says that she never indulged herself with the question Why me?, she remembers being struck by the irony that she could become infected."
On the telephone, Jane is unfailingly polite and considerate, her voice soft and soothing. She seems like the kind of person in front of whom you wouldn't want to curse. Then she laughs, and her gentle, high voice deepens and crackles. You can tell by her demeanor that she is a woman who understands the bitter ironies of life. Getting divorced at the age of 47 wasn't something that was supposed to happen to her. Neither was getting infected with HIV.

Although Jane says that she never indulged herself with the question "Why me?," she remembers being struck by the irony that she could become infected. "I had been married for 23 years to the same man," she said. "I was monogamous. When we divorced -- a divorce I didn't want -- I didn't quite know what to do. The counselor I saw after the split kept telling me that I needed to 'get on with my life.' That meant dating, a challenge I did not welcome. What led me to try it was the thought, 'How am I going to have the kind of social life I enjoyed as half a couple?' During the next years, I dated a few men, none of them strangers. I didn't consider myself promiscuous."

In her intimate relationships, Jane saw no need to use condoms because, as an older woman, she knew she couldn't become pregnant. She had few sexual partners and knew them well, so she didn't fear sexually transmitted diseases (STDs). But, as sex educators and medical professionals have repeatedly stated for years, you don't have to be intimate with a lot of people to become infected with HIV or any other STD. It is the people with whom we are sexual, and the kind of sex we have, that matters. For Jane, who describes herself as "the original 1950s good girl," HIV was something that happened to others.

When Jane came home from San Francisco in January 1991, after a wonderful holiday visit with friends and her son, Stephen, she knew she'd have a stack of mail to sort through. Trading the relative warmth of the Bay area for a blustery Midwestern winter hadn't put her in the best frame of mind, so when she found a letter from a health insurance company to which she had applied for new coverage, she hoped it was a friendly welcome letter. Her first shock was in finding that she'd been denied coverage. Her second came with the statement, "Your blood test disclosed a significant abnormality ... we will notify your physician."

Though Jane was completely shocked by the news, she never kept her diagnosis a secret from her family and closest friends. "I'm not the kind of person who keeps things to myself," she said. "From the moment I opened that envelope at 4 p.m. on Jan. 6, 1991, I knew there was something seriously wrong; I immediately called Stephen to talk about it. My first thought was leukemia, because during the course of my volunteer work in the mid-'80s I had spent time with a little girl who had it.

"The next day, I telephoned the insurance company, and the underwriter told me that they would have to send the results of my blood test to my physician by mail, which I knew could take several days. When I became angry and upset, the underwriter offered to fax the results instead. Several hours later I was in my doctor's office. When I asked her what was wrong, she took my hand. 'Jane,' she said, 'this insurance company claims you've tested positive for HIV.'"

A couple of weeks later, Jane found herself in the office of an anonymous HIV-testing clinic, receiving the same news all over again. The test counselor told her, "I'm sorry, but your test did come back positive." Jane was stunned. She actually had HIV. It wasn't some sort of awful mistake.

Even with the support of family and friends, Jane found herself shutting down. Within months of her diagnosis, she retired from a lifelong career in journalism to reduce stress and protect her health -- or, at least, that was what she told her friends. "In truth, I withdrew because I didn't want to face possible discrimination, rejection, intolerance," she said. "I became reclusive over the next four years, spending much of my time in my apartment, alone, watching too much TV."

Jane is no longer hiding. Far from it, in fact. In 1995 she became inspired to fight back; today, she speaks publicly all around the United States about her experiences living with HIV. Her story is not just a cautionary tale to women and men who think they aren't at risk because of their age or their small number of sexual partners. Her story is also one of hope and the activism and volunteerism that have given Jane's life new meaning and purpose. Today she is director of HIV Wisdom for Older Women, a national program that she founded in 2002 and now runs out of Southwest Boulevard Family Health Care in Kansas City. She was also the national coordinator of the National Association on HIV Over Fifty (NAHOF), which she helped found in 1995. She travels around the country often, speaking on HIV prevention and conducting workshops to raise awareness and support for older people affected by HIV.

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See Also
More Personal Accounts of Women With HIV/AIDS

Reader Comments:

Comment by: Jane B. (Australia) Thu., Aug. 25, 2011 at 9:18 pm EDT
Hi Jane

I am impressed by your story and I would like to provide a support service locally for women and families affected by HIV.Some tips would be helpful.

Regards Jane
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Comment by: Ellen (New York) Wed., Mar. 23, 2011 at 9:17 am EDT
Wow jane what a courageous story. I like your courge and your story means so much to others who now live with this virus. I pray that people with the virus will adopt your attitude for long life. Thank you. When you have God in you, you fear not the storm no matter what.
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Comment by: ginny (Ft. Walton Beach, FL) Sat., Dec. 4, 2010 at 2:33 pm EST
I am a high school teacher who instructs a unit on HIV/AIDS as part of the curriculum. Since I saw the article on you in USA Today in 2000, I have included your story in my presentation. It always has a huge impact on my students. I am so glad that you are doing well and still very involved in educating a society that has become complacent about a pandemic that is still very much a threat. You go, girl!
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Comment by: teresa (chicago) Mon., Sep. 13, 2010 at 10:48 am EDT
My story is so very similar to yours. I had been with the same man almost all my life. we were married for 18 yrs. Right after our son was born my husband got sick. 4weeks in icu and a diagnosis of aids. They immediately tested me and our son. Thankfully our son was negative. I on the other hand was positive. I rarely drank didn't smoke or do drugs. I was a middle age middle class mom who went to church. To say I was stunned is an understatement. My husband had a hard time living with what he had done. I forgave him and God forgave him but he could not forgive himself. He died on his 42 birthday of alcoholism. It took him 10yrs to drink himself to death. A single stupid mistake changed our lives forever. Thanks for sharing your story. It has helped me feel less alone. lol
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Comment by: cain a. (bell, ca) Sun., Aug. 22, 2010 at 9:14 pm EDT
find ms. fowler to be an admirable human being.
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Comment by: mia (spain) Wed., Mar. 10, 2010 at 5:31 pm EST
Jane,you are my heroine, thanks to a blood donation, now I know that my life to changed, and seeing in others the life that I can have, it gives me forces to continue forward. Only two weeks have happened since I know it, but I am not capable of making suffer to my family, we are small and my father I make this one ill. Maybe, one day sits me so loudly as your. A very big embrace and thousand Graces
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Comment by: Rosalia N Shatilweh (Windhoek-Namibia) Thu., Nov. 12, 2009 at 4:51 pm EST
Being an energitic women, despite the fact that im Hiv positive, yet i feel brave and inspired by knowing my status, and looking forward to fight the battle no matter what the stuation may be, henceforth being a single mother with 2 daughters aged 23 and 18, the only challege i forsee perhaps is to enable their studies. And what im looking forward is to enter into relationship with a men who is also hiv positive for serious relationship.
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Comment by: Rose (Cameroon) Tue., May. 26, 2009 at 5:05 am EDT
DEAREST IN THE COMMUNITY OF WLHIV. IT IS A PLEASURE TO DISCOVER THIS WEB SITE. YOUR TESTIMONIES HAVE TOUCHED ME . PLEASE HELP ME TO COME OUT OF MY OWN SITUATION FOR IT IS A LONG TIME THAT I AM HIV POSITIVE . ALREADY ON TREATMENT.bACTUALLY MY PHYSICAL HEALTH CONDITION IS VERY GOOD BECAUSE I ACCEPTED MY SITUATION FROM THE FIRST DAY AND DECIDED TO BE ONE OF THOSE WHO WILL SURVIVE WITH THE VIRUS SINCE THEN 2002. I WAS VERY SICK AT FIRST SICK BECAUSE MY HUSBAND MADE TERRIBLE SCANDAL AFTER HE HAD SEEN ME AWAY. BUT MY FAMILY ASSISTED ME MORALY AND FINANCIALLY TILL THE TIME I HAD TO BEGIN THE ARV. MY DEAR THESE DRUGS ARE VERY HELPFULL TRY AND SEE. DONT WORRY U WILL ALSO SURVIVE AND LIVE LIKE I DO TODAY.
BUT ACTUALLY I AM 35 YEARS AND WANT TO START LIFE ALL OVER AGAIN. MEN NEED ME FOR MARRIAGE WHAT CAN I DO ? HELP
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Comment by: MIA (BALTIMORE) Mon., Mar. 16, 2009 at 4:47 pm EDT
Stephanie,
Your story is my story completley. I so wish you find some joy in life. I took had the same course with the bisexual man that brought this to me. let me know if you ever want to talk I wish you the peace of God that passess all understanding. YOu will survive as you have been.
take care
MIA
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Comment by: Alisson (MEXICO) Fri., Feb. 6, 2009 at 9:33 pm EST
jane eres un ejemplo de Vida a Seguir,no importa cuan grande sea la tormenta; ya que al terminar siempre habra un arcoiris de regalo para Sonreir y seguir adelante con la Bendicion de mi Padre Dios y la luz del Espirutu Santo, Un abrazo Bye,Bye
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Comment by: RKE (New York, NY) Wed., Oct. 22, 2008 at 1:37 pm EDT
Stephenie: I'm so sorry to hear that you are having a hard time. If you are looking for advice and some words of support, you might want to contact Jane Fowler. Her e-mail address is jane@hivwisdom.org.
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Comment by: RKE (New York, NY) Wed., Oct. 22, 2008 at 1:37 pm EDT
Stephenie: I'm so sorry to hear that you are having a hard time. If you are looking for advice and some words of support, you might want to contact Jane Fowler. Her e-mail address is jane@hivwisdom.org.
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Comment by: Janet (Uganda) Wed., Oct. 22, 2008 at 8:39 am EDT
Living with HIV/AIDS is a challenge and difficult circumstance to cope with. I tested positive in 1999 when pregnant. I never fell sick or had any serious opportunistic diseases such that with time I thought the results were faulty. It was only when I was pregnant again that I tested in 2 hospitals to confirm the first test result. I now use ARVs, Truvada and efavirenz. My health and CD4 have improved greatly, from 220 to 780.
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Comment by: stephenie (fort worth texas) Wed., Oct. 22, 2008 at 3:03 am EDT
This story brought me to tears. I am 51 and have been HIV pos since 1989. I got it from my husband, the love of my life. He was living a secret bisexual life. I was devastated, destroyed. We were married 14 years at the time with two sons.

I guess I just lost my mind for about six months and went on a suicide mission to end what i believed was the last days of my life. I left my beautiful home and my family to become someone i did not know. Many changes during that time. Bad things happened to me, that scarred me forever.

Now so many years later after losing my husband in 1994, just short of being married 20 years, i still seclude myself from my family and friends living in self pity, afraid to try to live. After two failed relationships I have just given up on finding love. I need help, a big push to keep going ... I have a wonderful family, great kids but my apartment and my dogs keep me from going out in the world. Living on SSI and raising my 15-year-old granddaughter that has been my life since she was born. Your story inspired me. How do you do it? Can someone help me live and feel like I'm not alone with this virus?
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Comment by: Seekyah Mon., Sep. 22, 2008 at 11:34 pm EDT
You are truly a blessing!
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Comment by: gayle d. Thu., Aug. 14, 2008 at 5:17 pm EDT
Hi, I have a great doctor in nyc, Dr. Glesby, and I am inspired by your story. You are a strong woman like myself. I had the virus for awhile too. but thinking positive and being positive works!
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Comment by: michele Mon., Jul. 21, 2008 at 3:32 pm EDT
good bless you, you are true inspiration. your story is so motivating for any one who is infected and for those who are not, may god bless for allpositve work
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