By Vicky Uhland
Juan Adrover was a teenager when he met Keishla Garcia, the first female diagnosed with hemophilia in Puerto Rico.
“Before I met her, I had no idea what hemophilia was,” Adrover told the audience during the Friday morning session, Three’s Company: Relationships and Bleeding Disorders.
Eight years later, Adrover and Garcia are married, and they’ve learned the importance of communication in their relationship. Adrover has also learned how to deal with his frustration of not being able to fix Garcia’s disease.
“I would think: ‘Why does she have to go through this; why can’t I do something to help?’” he said. “I wanted to do this and this and this, but very early on, I learned that might not be what she needs. The biggest jump for me was not doing what I thought would help, but doing what she needs. And sometimes just showing up is the best thing I can do for her.”
Adrover was one of the spouses of people with hemophilia who shared their experiences during the freewheeling session, which also included comments and questions from the audience.
Panelist Susan Hartmann met her husband, Dan Hartmann, in the fall of 1988 when they were in ninth grade.
“Before we were a couple, I knew about his severe hemophilia A and HIV,” she said. “Intellectually, I knew what being with him would be like. But the reality of partnering with a person with a severe chronic illness was different than I thought. I couldn’t think through it; I had to live with it and experience it.”
Eventually, Susan realized she was living with a slow-burning anger.
“It’s not intellectual anger; it built up over the years,” she said. “And it snuck up on us in an interesting way. He had a lot of pain, and his defense mechanism was to dial back. So very quietly, without realizing I was doing it, I took on things, like doing all of the errands. I don’t think either of us realized I was doing everything.”
By the time Dan had a full knee replacement 10 years ago, followed by three related surgeries, Susan had had enough. She was caring for their 2-year-old child with no family nearby, and also trying to deal with her husband’s hospitalizations.
“I felt like I was alone in the relationship,” she said. “I felt like I was done. I thought: ‘I love this guy, but something’s got to give.’”
Fortunately, a social worker observed Susan’s distress and reached out to help. As a result, both of the Hartmanns realized they needed to have frequent conversations about managing the anger and resentment resulting from his disease.
“Just saying, ‘I feel angry about this’ or ‘this isn’t fair’ makes a difference,” Susan said. “It’s constant, intentional communication based on, ‘this is what I need, and how can we come to a resolution?’”
The Hartmanns also learned that it was important for Dan to manage his own health care. “I said, ‘I don’t want to deal with that—I’m your partner, not your nurse,’” Susan said.
Audience members also discussed the significance of being more of a lover to their partners than a health care provider. And they and the panelists emphasized the importance of full disclosure about their disease to their partners.
“You’re walking down the aisle and you’ve got the dress and the suit, and love, love, love. And then here comes the bleeding disorder,” said session moderator Cathy Tiggs, MSSA, LISW, an HTC social worker at University Hospitals Cleveland Medical Center.
“Don’t downplay your disease. Don’t be afraid to say what it’s like because you’re afraid someone will run away.” ■