Embracing intimacy
Philadelphia Inquirer – November 13, 2006

James Leftwich wants a girlfriend, wants to get married, wants the same kind of “normal” life most others desire.

For years, he was encouraged not to try. Because of his schizophrenia and depression, those closest to him thought it would be too much for him to handle.

Now the librarian from New York runs a dating and support Web site aimed at those with serious mental health problems.

“It’s harder for a person with a mental illness, but they shouldn’t give up on the goals they used to have before they were diagnosed,” Leftwich says.

For decades, family members, case workers and the medical community have encouraged people with severe mental health issues – bipolar disorder, schizophrenia and major depression, among others – to stay away from intimate relationships. Too much stress. Too much stigma. Too much risk.

A few researchers, however, are suggesting that just the opposite might be true. Over the last few years, they have publicly supported the idea that being in a good relationship can provide stability, companionship and support, just as it does in what they call the “non-diagnosed” community.

“They want the same thing that everyone else does,” says Michael Blank, assistant professor of psychiatry at the University of Pennsylvania School of Medicine, who is overseeing several studies involving safe-sex practices among the mentally ill.

But the idea of more discussion about relationships and sex has proved to be a tough sell. Those within the system and those who study it say that most people don’t think about the mentally ill being sexual at all.

“Providers have their own ideas and attitudes about sexuality and their clients,” says LaKeetra McClaine, a research specialist at the University of Pennsylvania Collaborative on Community Integration. “Most of them just assume their clients are asexual.”

They’re not.

The HIV infection rate among people with serious mental illness is almost seven times higher than in the general population, according to a 2002 Penn study. And people with mental illness were more likely to have multiple partners at one time, shorter relationships, and were sexually intimate sooner, researchers at Indiana and Purdue Universities reported last May in the Journal of Sex Research.

But sex and relationships, intimate and otherwise, just aren’t on the agenda.

Patients surveyed say their doctors usually don’t mention the sexual side effects of medications. Overloaded case workers focus on jobs, housing and medication needs – not holding hands and seeing movies.

“I think sex is an embarrassing topic for the therapist as much as anyone else,” said Joseph Rogers, president and chief executive officer of the Mental Health Association of Southeastern Pennsylvania, who is diagnosed with bipolar disorder. “I never got much counseling or direct support. They don’t have someone handing out advice for the lovelorn.”

Armed with the high infection rates for HIV, researchers are trying to find ways to get information into the hands of those who need it.

One Penn study of 24 case workers and 300 clients at a mental health facility is looking at the effectiveness of a safe-sex education program.

Although the study doesn’t end until 2008, the response so far has been mixed.

“Some say it’s about time, and the HIV infection rates are alarming, and we need to provide condoms,” says Julie Tennille, a senior research associate who works with Blank at Penn.

“Other people aren’t comfortable and fear that the program interferes with their religious beliefs.”

Vernell Rainey has been a mental health case worker for more than 18 years. At Hall-Mercer Community Mental Health Center in Philadelphia, she has 18 clients, all of whom are diagnosed with a psychiatric illness.

“We’re considered their mother, father, sister, aunt, doctor, lawyer and Indian chief,” she said in a call monitored by public relations staff.

Before taking part in the Penn study, Rainey said it never occurred to her to bring up sexual issues.

“We might have asked if they had children, but we’re just so wrapped up in other thoughts, we never thought of them having relationships,” she said.

Now each client goes through a year-long program about safe sex and sexuality. The center also holds talks about living with a mental illness. Partners, family and friends are encouraged to come.

Rainey said that she has no problems talking about condom use or other sexual issues, but some of her coworkers are a little uneasy. One male coworker specifically asks for help when demonstrating condom use to his female clients, Rainey says.

Everyone agrees that mental illness, like any serious disorder, adds challenges to developing and maintaining relationships. Even those on medication have “breakthrough moments,” said Eric Wright, co-author of the Indiana/Purdue study.

“Mental illness affects the way you perceive the world and how you perceive the people who care about you the most,” said Wright.

“There are some issues that can be a big challenge, like if you’re psychotic, you can get caught in the feelings and delusions, and the people around you can become the object of your delusion.”

It’s not always easy for a partner to understand when someone hears voices or has major mood swings or becomes paranoid.

Even so, Wright said, one study found that psychiatric patients who were allowed to get married were also less likely to be hospitalized.

Because sexuality in the mental health community is just starting to be researched, it’s unclear whether those who partner with other “diagnosed” people are better off. Many only date those in the community because that’s who they know, says Penn’s McClaine.

Mari Bennett, diagnosed with bipolar disorder, says she’s dated both – with good and bad results either way. Married twice, she lives in a transitional living program in Norristown.

It was her therapist who suggested she start dating again. Now she’s seeing a “non-diagnosed” lawyer who knows all about her illness.

“I do take some pause before telling people, but everyone is taking a pill for something these days,” Bennett said. “But if I’m going to bring someone into my life, after a certain amount of time, you have to have some very honest conversations with them.”

Wright, who himself suffers from major depression, said the issue of coming out to potential partners about your mental illness is a huge one.

“It’s much like HIV, it’s not something that’s going to go over very well and it might scare some people off,” the researcher said.

That’s why Leftwich, the New York librarian, started his dating site. By just being on the site, it’s an automatic diagnostic heads-up, he said.

After three years, the site now has more than 5,300 members and four marriages to celebrate, he said.

“The possibility of rejection is still very real. The site isn’t a cure-all,” Leftwich said. “But it’s more of a welcoming area, where people aren’t so hung up on looks or what you’ve achieved. They’re just more willing to give a person a chance.”