People with disabilities are seen as ‘projects’ in relationships

To fill out their profile on the Hinge dating app, the user answers questions that ask for an explanatory answer. When marketer Hannah Foote, 22, of Phoenix, shared “disabled people’s rights” as a social cause she champions, the responses she received were revealing: People who matched her called her a “saint ” for having this concern. They didn’t know that Hannah herself was one of those people.

Hannah has a genetic disorder that causes shortness of breath, fatigue, dizziness and frequent fainting. Her physical condition adds an additional layer of complexity to the already confusing world of online dating. Hannah has received inappropriate messages from people she has matched who have declared her “too beautiful to be disabled”. Others asked him prying questions about his sex life.

“They weren’t asking about me – what I’m comfortable with,” he said. “They were asking what I am capable of doing to please them.”

Away from the online world, Hannah faces other difficulties when she wants to date someone: she may agree to date the person, but when the time comes, she may not feel physically fit to do so. If she’s invited to a show, she doesn’t know how long she’ll be able to stand. And she is acutely aware of how she thinks others see her.

“Because of my physical problems, people see me as a project to tackle,” Hannah said. “And a lot of people in their 20s aren’t looking for a project.”

An estimated 133 million Americans suffer from at least one chronic health problem such as heart, respiratory or mental illness. But the stigma still attached to it can make finding a relationship even more difficult, an endeavor that more than half of American adults now describe as difficult.

Deciding how and whether to talk about these health issues with potential suitors can leave people walking a tightrope, hesitating between revealing their vulnerability or protecting themselves.

“At the beginning of anything, you’re trying to decide on the right degree of candor and the right degree of boundaries,” said Quincee Gideon, a Los Angeles-based psychologist who specializes in working with patients who have chronic illness. “You shouldn’t feel obligated to reveal everything, but neither should you feel ashamed to reveal it. That’s the dilemma.”

The decision to open the game is personal

When Joseph Kibler started using dating apps in 2009, he experimented with finding the best way to share information about his health. The actor, who lives in Brooklyn, is 33 years old and enjoys visiting restaurants and playing musical instruments, was born with HIV and neurological complications that affect his fine motor skills.

After going on a first date with a person who seemed shocked by his physical condition, Kibler created three different profiles on OKCupid. In one profile he posted only his photo; in another, he revealed that he uses a wheelchair or crutches; in the third, he shared both his physical disability and the fact that he was HIV positive.

Joseph created the different profiles out of curiosity: he wanted to know which of the three would attract the most romantic interest. He said the second profile usually attracted the most messages.

Psychology professor Elizabeth Mazur, from Penn State Greater Allegheny University, surveyed people with debilitating health conditions to learn about their experiences of finding relationships online and whether they choose to share information about their health. Her findings suggest that dating apps can be a way for people with disabilities to define how and when they will disclose this information.

“There is no right or wrong answer,” Mazur said. “I was hoping to conclude my study with recommendations, but each person has a different philosophy, and people aren’t divided into those who make their disabilities invisible or invisible.”

Some study participants do not share health information on their profiles, while others do. “There is the idea of ​​using this factor to exclude suitors who may not interest the person,” he pointed out.

Joseph, who is now engaged, said he sees having HIV and a disability as a “set-up system” to filter the people he interacts with. “I move around the world in a wheelchair, with crutches and walking,” he said. “And I see in people’s faces daily who understands me and who doesn’t.”

Sharing health information is a personal decision, said Rachael Rose, a Philadelphia-based sex educator and relationship coach who has indolent systemic mastocystosis, a rare condition that affects her everyday life.

Even so, she often advises her clients to “open up”. So, she pointed out, if a person isn’t interested in continuing to get to know you or isn’t willing to adapt to be with you, you’ll already know they’re not the right person to invest in.

But revealing everything can provoke different reactions. Hannah Foote, who received sexually explicit responses after sharing her status on dating apps, saved screenshots of the most absurd messages and thought about posting them on the Reddit online discussion forum. She eventually changed her mind, and instead shared them with friends with disabilities who had similar interactions.

There isn’t much data on how often people with chronic illnesses face harassment on dating apps, but Mazur’s research suggests that harassment and fetishization are especially acute for women with visible disabilities.

Mazur said she has met women in the group who have experienced situations in which people sexualize their conditions, but she has never heard the same complaint from men. Harassment, regardless of disability, follows the same gender differentiation. Women report more harassment than men when they seek online relationships, she said.

Showing your reality can facilitate the search

Self-disclosure – the process of disclosing your own personal information overtly or implicitly – is an important part of any relationship that is taking shape. Sharing information about your health can be especially empowering for the chronically ill who face internalized stigma and shame, Gideon said. And for anyone who needs a potential partner to adapt to their conditions, disclosure can create the space needed for their needs to be met.

Graphic designer Kerra Macdonald, 33, of Napa, Calif., has fibromyalgia, a chronic condition that causes musculoskeletal pain and sleep disturbances, as well as chronic fatigue syndrome.

“Even though the date is something that to most people seems relatively simple, like going out to dinner, getting there by car is physically exhausting. Getting ready to go out is physically exhausting,” Kerra said.

She learned to manage her energy in ways that prevent exacerbations of the disease. Before going out on a date, she avoids doing housework or even cooking a meal, because these activities can be exhausting. And she schedules recovery time after the date.

Kerra has found that when she reveals her identity to her potential partners — as a transgender woman who has a chronic illness — it helps her to be more open to a romantic connection.

“Sometimes necessary things for people with chronic illnesses, like canceling a date at the last minute, are seen in the dating world as a sign that you’re not someone worth investing in,” said Iman Rahman, 22.

She has Ehlers-Danlos syndrome, a painful connective tissue disorder that affects mobility, and has an Instagram account that publicizes the voices of disabled people of color. But when she conveys her needs to someone she wants to date and is met, her understanding of the romantic connection deepens.

“Having someone who adapts to your needs out of love and kindness is a very healing thing,” Iman said. “Disabled intimacy is so beautiful. It’s when your girlfriend sends you bags of emesis, knowing you’re throwing up a lot. It’s when the other person is aware of the most vulnerable aspects of your life and takes care of you.”

Approach the matter carefully

If someone is interested in sharing their health information with potential romantic partners, Rachael Rose, the sex educator and relationship coach, suggested they follow a roadmap. First, decide what you want out of this conversation. Then let the other person know you want to talk. If you’re worried about what the other person might say, you can start by sharing that fear.

“Sometimes just expressing your fears out loud can help reduce anxiety,” Rose said. Then you can share with the other how comfortable you feel and say what you would like to see happen, that is, if you would like something. Finally, thank the person for listening.

But many people share the news of their chronic illnesses without having these conversations. App users can post a profile picture or mention health information on their profile, as Joseph did. Regardless of how a person decides to disclose a medical issue, their focus is on feeling safe and supported when they disclose it, Gideon said.

As you prepare to share your illness or disability, Gideon said, seeking support from your circle of friends and family can help you get through the process. In this way, “no matter what the other person’s reaction is, you will have some way to calm down and stabilize.”

Translation by Clara Allain