There's Always Room for Hope
It's been ten years now, and it's hard to think of my life without AIDS. I was diagnosed in 1994, two weeks after my husband was diagnosed. He had two T-cells at the time and I had seventy. I was a married woman, raising dogs, cats, birds, children, and a husband. I could not believe that this had happened to me. I'm now 59 years old, widowed, and a grandmother to four.
I remember sitting in the doctor's office when they gave me the diagnosis -- total unbelief! How could this be? What I didn't realize then was that my husband was one of a group of men who are now referred to as "living on the down-low." As I later learned from an HIV prevention group, "down-low" means a man who has sex with other men as well as his female partner.
My husband and I began to prepare to die -- wrote out wills, straightened up our financial arrangements, and prepared the funerals. What I didn't expect is that new medications were on the horizon and that I would respond well to them, although my husband would not.
I knew nothing about AIDS at the time. I thought it only infected gay men on the coasts. I didn't realize that anyone could be at risk, including the over 50 population.
To increase my knowledge about this disease, I began participating in a local research sites' community advisory board. For the next several years, I learned about nukes, non-nukes, and the soon to come protease inhibitors. I found other people living with HIV/AIDS, although none were my age. Everyone was in their twenties, thirties or forties.
During this time, I was experiencing hot flashes and night sweats and didn't know if it was due to the AIDS diagnosis or the aging process. After taking hormone replacement therapy, these problems lessened a bit. However, new statistics arose from a study that showed an increased cancer risk in women using hormone replacement therapy over long periods of time. Since I already had a compromised immune system, I ceased the hormone replacement therapy immediately and began searching for natural therapies for the problem.
I realized that there were not a lot of studies for women living with HIV/AIDS, especially post-menopausal women. No one was looking at the aging process -- bone loss, slower metabolism, diabetes, fatigue, and muscle loss.
For five years, I was involved as a representative to the Community Constituency Group. This group advocates for the rights of patients in clinical research. Due to our advocacy with the AIDS Clinical Trials Group (ACTG), researchers are now beginning to look at these things. The Women's Health Committee of the ACTG has numerous studies looking at HIV in pregnancy as well as post-menopausal women and aging. There is also a study comparing the effects of HIV in the under 45 population versus the over 45 population and one on the effects of exercise on muscle loss. This is a good thing, since many of us are now living longer due to the success of HAART.
I've found that services for older adults living with HIV/AIDS to be adequate if you live near a large metropolitan area. However, for many older seniors in rural areas, the stigma is still there and your status has to be concealed. I drive an hour to my doctor, and my meds come via mail order. I do this because I can't reveal my status to anyone in my area. Everyone's aunt, uncle, brother, sister, or mom could work at the hospital, the lab, or the local pharmacies. And small towns talk, especially about something as large as one of their own with an AIDS diagnosis.
As a widow and a woman approaching 60, my life has taken on new meaning. I've had to work hard to find others of my age for a support group. Many of us meet at various conferences or talk via the Internet. We have even formed a local brunch group that meets monthly, but, because of the stigma, we go out of our area for the brunch. In spite of the support group, there are times of loneliness. My general feeling is that I am not interested in dating again, just finding a companion with whom I can talk and travel, someone who understands what it is like to live with HIV and be a senior. I think this is different for a younger person diagnosed today. I can look back on a life that was full and lived well. For this reason, I have no regrets about a future that may not look as well as I would like. However, a younger person has their entire future ahead of them. With an HIV/AIDS diagnosis, that future may look bleak.
As I look back on where I've been and where I'm going, there's hope. I am doing well on the meds, enjoying my family and friends, my retirement, and my time to myself. I've said that "it can't get any better than this" -- that is, if the meds continue to work and my health holds out. There is always that underlying fear that, as we age, one more thing will crop up that we have to deal with along with the HIV/AIDS diagnosis.
But I can't think of that now -- I need to plant some flowers.
Sharon, 59, is an advocate for women living with HIV/AIDS, a volunteer at a pet shelter, a grandmother of four, and lives in a small town in Midwestern America.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.