Wendy is talking about a photo of her two kids, Brandon and Leigh.
“I aksed them one night what they wanted for dinner and they wanted [doughnuts] and chocolate milk so, because this was a family vacation and we seldom got a chance to go anywhere, that was their dinner.”
The photo shows two happy little faces under white chef’s hats, doughnuts and milk in hand. Wendy’s children smile down on her from countless pictures scattered about her living room. There are baby photos, pictures of the family on vacation, Brandon in cap and gown. They all tell the story of the life of one family. But what’s not captured in the photos is the illness that’s framed Wendy’s life for the last two decades.
“I found out I was infected when I was 26; I was eight months pregnant with my second child. I was devastated.”
Wendy contracted HIV from her husband in the late ’80s, when there was still little known about the illness, and passed it on to her son Brandon. Her daughter Leigh was two at the time and is HIV negative. Wendy says it was a struggle to balance the illness and her responsibilities as wife and mother.
“It was a rollercoaster ride. I wasn’t going to think about the fact that I was infected because I didn’t have time to. I felt like I was going crazy but I couldn’t go crazy because I was, like most women are in relationships where there’s a mommy and a daddy and a whole bunch of kids, the main caregiver.”
Researchers at UAB know the struggle Wendy and other HIV positive mothers face, that’s why they started the MOMS Project. It’s the first National Institute of Health study to focus on this group. MOMS stands for “Making our Mothers Stronger” — the aim is to teach HIV positive moms to better manage stress. Dr. Susan Davies is the lead investigator.
“It’s an intervention program and actually we have two different interventions. We’re trying to reduce stress in this population in one group by focusing on parenting related stressor and trying to strengthen parenting practices. And the other intervention is focused, very much, on the patient themselves.”
Studies show a direct link between stress and a number of health issues, including heart problems and depression. In someone with HIV/AIDS the affects of stress can be even more debilitating. Stress lowers the body’s ability to fight off illnesses; in someone who’s already immuno-compromised that could create a health disaster.
Dr. Lydia Temoshok is an expert on the affects of stress on individuals with HIV/AIDS. She’s the director of the Behavioral Medicine Program at the Institute on Human Virology in Baltimore. She says it’s not just the stress taht’s bad for HIV positive people, a lot also depends on how a person copes with that stress.
“The person who can roll with the punches, who can confront the stressor and who can solve the problem is gonna do much better and their immune system is going to commensurately be more adaptive.”
She says one of the best ways for someone to cope with a stressor is to look to others for help. That’s why groups like UAB’s MOMS Project are so vital.
“Being part of a group and seeing how other people are coping, acknowledging to those other individuals in the group that you, too, are struggling with having HIV, with disclosure to friends, all of those issues are dealt with in groups and groups are one of the best things you can do to really help cope with this disease and feel like you’re not along.”
UAB’s Dr. Susan Davies says the women in the MOMS Project have begun forming support networks of their own.
“So in the end you have women that are much less depressed, so much less isolated and feeling so much stronger about themselves and they do have a very strong network in the classroom but many of them have also developed really strong networks on their own that will continue to support them in the future.”
While the women are leaving meetings feeling stronger, getting them there has been a challenge. There’s still a stigma surrounding AIDS; that stigma had some women turning away at the very door to a MOMS meeting.
“There have been several that we talked to them thirty minutes before they were coming and ‘yeah, yeah, yeah, I’ll be there’ and then just couldn’t quite do it. And we certainly have had, as you say, individuals come to the classroom door and decide that they just; it’s a risk they weren’t ready to take.”
But, she says, once the women do take that risk, they’re hooked. She hopes, once the study is complete, that other agencies will be able to pull from the MOMS Project and create their own programs.
As for Wendy, her two kids are out of the house now, in college. Her daughter Leigh has developed a whole host of psychological problems, Wendy says from living with a mother and brother who share a life-ending illness.
“She has a lot of emotional problems, she has a lot of abandonment issues and this is not just me speaking, this is professional people who I have taken her two since the time she was eight who have told me that her weight problems, the problems I’m having dealing with her drinking in college and doing drugs all come from the fact that she was raised in a family of AIDS.”
Wendy says she wishes something like MOMS had been around when she was raising her kids. Maybe, it would have made a difference.
UAB’s MOMS Project is slated to end in 2007, all though they do have a little money that may allow them to extend it into the following year.