Dating and Relationships

Geal pulls Chris in for a smooch Geal pulls Chris in for a smooch

Does a compromised heart limit our emotional opportunities and physical capacity for love? It can. But only if we let it. Read on to see how PH patients handle the intricacies of dating and dealing with a chronic health condition.

Finding Love as a PH Patient

By Katie Tobias, PH Patient

Sorting Through the Frogs

“A major part of starting and maintaining a relationship with PH is being comfortable with your situation,” Brittany, a 27-year-old PH patient, explains. “If you’re not confident that you’re well enough or emotionally stable enough for a relationship, the other person is going to see that and back off.”

Brittany is married now, but her dating life did not begin with Prince Charming. While on Flolan™, she dated a few people, and she remembers one sweetheart in particular: “When I showed him my Hickman site, his response was ‘Eww! That’s disgusting!’” Naturally, Brittany swore off dating for a while and, in that time, was able to come off Flolan™ and leave the pump behind.

Then one day her friends dragged her to a concert where she met her future husband, Daniel. “I didn’t have the pump when I met Daniel, but I don’t know that it would’ve made a difference,” Brittany explains. “I’ve let him know that there’s always that chance that I may have to go back on it, but he’s more worried about how much time I’ll spend in the hospital with infections than what it looks like. Being open and honest was the best thing I ever could’ve done because it opened the channels of communication where he wasn’t afraid to ask questions. If someone’s not willing to accept every aspect of PH, they’re not worth your time.”

Finding a Prince

Allow me to introduce you to high school sweethearts, Hannah and Joe. Hannah, now 22, was diagnosed with PH at age 5, so she had plenty of time to navigate the uncharted waters of dating with PH. “I know that I am more than just a sick person,” she says. “Even though I have a disease, it doesn’t mean that I should feel guilty…or be overly cautious or reckless….”

Joe actually read about Hannah’s story in a local newspaper before he moved to the area and couldn’t wait to meet her. “Hannah has been very open about her illness with others,” he explains. “I think it is mostly because she knows she is an encouragement to others who struggle with PH and other medical complications.”

Ladies, you might want to grab a box of tissues because there’s more. “After we started dating, I would learn a little more at a time on a regular basis,” Joe continues. “I grew more and more in love with her. I realized that part of what made Hannah herself was all that she had gone through and experienced. We talked about what life would be like, and I loved Hannah so much that my feelings for her were greater than any negative effects [PH] could have on our relationship.” Joe and Hannah are now married, and they have an adopted daughter. Joe, do you have a twin?

Saying “I do”

The glass is either half full or half empty, and with PH, it’s easy to be thirsting for more. But, again, it all goes back to perspective. Many of us can identify with this next patient’s fears of being undesirable with a machine around her waist and a tube coming out of her chest. Though it is a constant reminder to Robin that she doesn’t get to be “normal,” her husband, Jerad, considers the pump a blessing. It means more time with his beloved wife. Six months after starting Flolan™, Robin and her hubby exchanged their vows in front of 150 people. The pump was placed in an oven mit, inside a mom-made purse designed to match her beautiful ivory gown perfectly.

Like Robin, PH patient Geal believes the illness can have a positive effect on a relationship and marriage. “My husband has been my rock and foundation and also my greatest listener. I know our relationship as husband and wife has gotten stronger since my diagnosis, and we know now how fragile life can be and how it can change in a heartbeat, figuratively speaking.”

…And Living Happily Ever After

So, does a compromised heart limit our emotional opportunities for love? Obviously, not. But, what about the sexual side of things? With the catheter in her chest, Geal says she and her husband are more careful when they’re cuddling or being intimate, but it hasn’t changed their love for each other.

As Brittany said in the beginning, as long as you’re okay with your situation, everyone else will be too. Sean says that transitioning off the pump gave him back what rapper T.I. calls the “swagger of a college kid.” It’s all in how you perceive yourself. That’s all that matters. If you feel sexy then you are sexy, no matter what.

Instead of being seen as sick and fragile, we should be desired. We are a rare, hot commodity. Even with a life-threatening illness, we just keep going and going and going… in every aspect of our lives.

To request Katie’s article in its entirety, complete with thoughts from PH patients about dating, love and sex, email Outreach@PHAssociation.org. 

Additional Resources

E-Learning Guide: Relationships with Pulmonary Hypertension

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.