For Those Newly Diagnosed With HIV, What Would a Doula Do?

Michael Crumpler, Lodz Joseph, Martez Smith, Sur Rodney (Sur), Pato Hebert and, in front: Iele Paloumpsis (in gray) and Ted Kerr ("Love Positive Women" shirt), who gathered to explore the roles of HIV doulas.
Victoria Law

"Trauma causes you to forget what you know," stated Michael Crumpler. Crumpler was married and in seminary when he learned that he had HIV. "It knocked me off my trajectory," he recalled. "I felt like a fool, a bad person, a fraud." He dropped out of seminary, divorced his wife and, a year later, became addicted to crystal meth.

Looking back, he reflected, "Trauma causes you to forget how to explore feelings. You forget where your resources are. Friends later asked, 'Why didn't you call me?' It wasn't that I don't want to talk to you, but I forgot you were there.'"

What if someone had helped Crumpler remember the resources and support networks he already had? What if Crumpler had had an HIV doula to help him explore his thoughts, feelings and options after he was diagnosed? Just as doulas are often enlisted to support people during births, deaths, abortions, gender transitions and other significant life events, what if doulas were available to support people living with HIV?

When Crumpler was diagnosed, his doctor assured him that, with adherence to antiretroviral medications, HIV was not a death sentence. "But there was no other care or interventions. There was nowhere else to go, no therapist to talk to, or family," he recounted.

"What would have been nice is for someone to have reminded me that I wasn't insane, that becoming positive does not make you stupid," Crumpler said. "You know what to do. It's like if there is a fire all of a sudden you forget how to call 911. I think what a lot of people do is forget what they know. I think a doula reminds you of what you know."

Remind Me That I Won't Die

Michael Crumpler
"A doula reminds you of what you know." Michael Crumpler.
Victoria Law

It's not that people living with HIV and their allies don't already do this work. Some communities have a long history of people supporting each other. In some cases, people do this doula-like work as part of their job; in others, this work is simply a part of being in the community. But for people who aren't in those communities when they receive the diagnosis, those first few minutes, days and weeks are filled with isolation and loneliness.

What if this kind of support were more widely available? This was the question that occurred to writer and organizer Ted Kerr, who frequently receives resource requests from people whose friends have been newly diagnosed. "Most often," he said, "these friends of friends already have the medical attention they need, but are missing other elements of care, like help in telling their parents, a sense of community with others living with HIV, or a place where they can talk about how AIDS meds might interact with various drugs they like to take."

These frequent requests prompted Kerr to ask what a more systemic support approach might look like. "What if upon learning you had HIV you could just text out something like "I HAVE HIV" and then you received a text back within five minutes with an offer to talk on the phone or meet for tea?" he asked. And what if that text connected a newly diagnosed person with "a sensitive, AIDS-aware person who could talk you through how you were feeling and, over the course of a few days or weeks or months, put you in touch with other individuals, organizations and resources to aid you in living with HIV?"

That vision prompted Kerr, Crumpler and other artists, activists, doulas and health care workers to explore the role of doulas in the lives of people living with HIV as part of a dialogue called "Time Is Not a Line". Now, they're making public their initial discussion and planning future events to spur more community discussion.

Martez Smith has also been part of the group. At age 17, he discovered the ballroom community of Columbus, Ohio. That community was his entry point into black gay culture. Within a year, people began disclosing their status during casual conversations. "It would come like a pile of bricks," he recalled.

A few years later, while interning at an AIDS service organization, Smith conducted his first HIV test. His patient was a young black man. "I saw myself in him," Smith recalled. The test came back positive. "It fucked me up," he remembered. "Originally I thought I had it together, thought I was handling -- I got this. But then the counter transference kicked in. And damn, this is me."

Three months later, Smith tested positive for HIV. "I had to face some things about myself, face a lot of things like what if I die? How am I going to tell my mom? I was covered under her insurance," he recalled.

What could an HIV doula have done? First, an HIV doula could "remind me that I wouldn't die." It would have helped had someone said, "'Calm down. It is going to be okay. Don't cloud your mind," he said.

Now, he said, "As someone living with HIV, I do this a lot. I will try to imagine what life is like twenty, thirty years from now. What complications will I be living with? Will I have some rare kind of cancer or something like that? There are questions that go on inside my head but don't have the spaces to explore them with other people."

Doula Dos and Don'ts

Lodz Joseph
"As a doula, you are there to hold space." Lodz Joseph.
Victoria Law

Doulas have also been part of the discussion, offering their experiences as the ones who provide support. Iele Paloumpsis and Lodz Joseph are doulas working at opposite ends of the life spectrum: Joseph has worked as a birth doula, while Paloumpsis is an end-of-life doula. Their work offers examples of what an HIV doula could do -- and shouldn't do.

When Joseph began as a doula, she recalled feeling as if she constantly needed to actively offer support, support that sometimes was more intrusive than helpful. She recounted one birth, during her early days, in which she continually offered her client chapstick even after repeated refusals. Now, she said, she takes the lead from her clients.

For Paloumpsis, the doula-patient relationship often varies. "In an ideal scenario, we will have time, from terminal diagnosis throughout the dying process and death itself, to help the patient come up with an end-of-life plan and offer support along the way. That is the ideal process," she said. But what often happens is that the stigma and trauma around death and dying prevent patients and their families from seeking doula support early on. In addition, when faced with death, patients and their families may not know what they need -- or be able to ask for what they need.

Whether supporting a birth or a death, doulas' role is to be responsive and not insert what they think the person needs. "As a doula, you are there to hold space for them," Joseph explained.

HIV doulas need not be specially trained people. In some communities, friends and loved ones have already taken on this role. Both Crumpler and Smith are already doing the work of HIV doulas in their daily lives.

Crumpler is now a chaplain at the Veteran Affairs hospital, where he offers emotional and spiritual support to patients. He emphasized the importance of understanding where the patient is coming from. The doula's role, he said, isn't fixing. Instead, doulas help to explore feelings and stay with the person as they articulate what they need.

"If you're going to sit down with someone and you don't know what bareback sex is or what their spiritual needs are, then you're just another social worker. The hardest work is understanding the language."

Smith, now pursuing his masters in social work, has been supporting people in his community, often drawing on his own experiences. "When I was twenty, I had several people in my face asking me, 'What are you going to do when you become HIV-positive?'" he recalled.

Remembering those times, he makes sure to keep judgment out of his conversations with young men who may be at risk for seroconverting.