Melissa's HIV / AIDS Story

Melissa

Melissa was a wife and mother living in the American heartland when she received a letter from a Missouri hospital that changed her life. It informed her that ten years earlier, while undergoing a tubal ligation procedure after her daughter’s birth, Melissa might have been purposely infected by a disgruntled HIV+ hospital worker who’d had access to nearly 200 patients. She needed to be tested immediately.

The letter helped to explain what had been a mystery: why she’d recently had two bouts of pneumonia which had left her weakened.  By the time she received her diagnosis, Melissa had been living with HIV for ten years. Her viral load was in the millions, her T-cell count was at a dangerously low 32 (a healthy count lies between 500 and 1,000).  

She left the doctor’s office stunned and with virtually no guidance. She remembers, “They told me I had it and here’s your scripts, and they send you out the door with no education, no follow up, no nothing.” 

She drove back to her remote, farmland community of 600 people not knowing what was next or how she was going to get through it.  She first told her husband who challenged her fidelity despite the letter of explanation from the hospital. His skepticism unnerved her.  She says, “You’re afraid for anybody to know because you don’t know how people are going to react, and how it’s going to affect your family.”

She decided to keep her diagnosis a secret to anyone but her family. Her son was then twenty, her daughter, only ten.  Melissa recalls, “I told her that basically I had a bug that wasn’t gonna go away.  Then as she got older I told her that I had HIV, but that it was something that… I would rather her not ever repeat it... It wasn’t a bad thing… but it would be best if no one else besides us knew.” 

Melissa reassured her daughter that she’d be around for a long time, as long as she took her medication. “She was my timer…She would always say, ‘Have you taken your meds?’  She learned what time I was supposed to take [them] and she was on it.”

For eight years after her diagnosis, Melissa had to fight for her survival without any outside support.  During those years her husband’s distrust only grew. 

“I couldn’t go anywhere by myself… He had to control everything, and It was just mentally beating me down.”

As the stress in her life increased Melissa reached a medical plateau. Her T-cell count had steadily climbed towards the safe range, but something kept her from reaching the ideal zone of well above 500. She knew that nothing was going to improve if something didn’t change. 

Melissa had been referred to a case worker at the Douglas County AIDS Project in Lawrence, KS (DCAP). She slowly opened up about her situation. Her daughter was now eighteen, her son had long been out of the house. She felt freer to share her struggles with someone outside of the family. 

At this point, Melissa had never met anyone with HIV. Yet there were groups of people in Lawrence, just like her, meeting regularly to support one another, share stories, pass along tips. If Melissa lived in the city she’d have access to the DCAP’s services and be closer to her doctors.

However, Melissa was on a fixed income and the costs of relocating seemed insurmountable. Then the case worker at DCAP told her of a housing grant she could apply for. While the decision wasn’t easy, Melissa knew that her health hung in the balance.

The grant provided enough funds to pay for the last few months of Melissa's mortgage while living at home, enabling her to save that money for her move. She was also given funding for a deposit on a new apartment, security payments, initial utility fees, and other expenses.  

Today, she’s grateful for the grant. “I would not have been able to leave [my husband] and … make the move in, to actually be around the support that I actually need, if it wasn’t for this grant… It gave me the strength to actually be able to leave. ”

Melissa’s new life in Lawrence means more immediate medical attention and the help of a weekly supportgroup where for the first time she has met women and men facing similar challenges. They are able to encourage each other without judgment.

“Now I’ve got my friends, the support group… To hear that they’re going through the same things, mentally, the stresses, and having to deal with the stigma of it, the same as I was…” As she describes this new fellowship, her voice builds with excitement. 

Not surprisingly, this moral support has had a significant effect on her health.  In the three months since her move to Lawrence, Melissa’s T-cell count rose 100 points. And with proximity to medical staff and regular doctor’s visits, she’s able to ameliorate outbreaks of possible antiviral medication side effects, like shingles. 

Grateful for the help she’s received, she’s giving back to the community. She is volunteering at the DCAP, often working a 12-hour day. She’s taking part in AIDS Walks, raising funds and awareness. And she’s currently working on creating a peer group “buddy system”. As she tells it, “That has been a big thing that I’d like to do. You know, be able to help others, especially when they are newly diagnosed, to realize that it’s not the end. It’s not the worst thing that could happen to you in your life… you’re still alive and there are meds now that will keep you alive for many years.

Looking back on her life before DCAP and Lawrence, she realizes just how far she’s come. “My mental state has just done a complete flip around. I actually look forward to waking up every day.”  And she’s using this new energy to focus on plans for the future: “I don’t want nobody to have to go through – to have to sit for eight years – not knowing anybody else that has it. That’s just not right.” 

Because of success stories like Melissa's, The Elizabeth Taylor AIDS Foundation has funded Douglas County AIDS Project in Lawrence, KS, with a grant to help provide housing for people living with HIV/AIDS.  Without a roof over your head it is hard to focus on basic health needs, including regular check-ups and medication maintenance and. You can learn more about these two organizations by visiting www.douglascountyaidsproject.org and www.ETAF.org or by downloading the free Elizabeth Taylor AIDS Foundation app on iPhone, android, or tablet.