Love in the Time of Chronic Illness

“Don’t even tempt me.”

That was Ashley Pierce’s response when her friend Tammi tried to set her up with Walter. Having spent a good portion of the last 10 years in a Las Vegas hospital bed, Pierce didn’t even want to entertain the thought of dating.

Besides, if he was anything like other guys she had pursued, she didn’t think he’d be able to handle it. He’d back out. Four years later, they are engaged. He never backed out.

“I never thought someone would marry me with my conditions,” 26-year-old Pierce recently wrote in a Facebook status.

Her conditions? Crohn’s Disease and ulcerative colitis—chronic inflammatory conditions that affect the gastrointestinal and digestive tracts and include complications ranging from abdominal cramps to malnutrition.

For Pierce, the most extreme cases were when the doctor told her parents she wouldn’t make it through the night, either because she had stopped breathing or was dangerously anemic, weighing in at 63 pounds. On more ordinary days, she experiences stomach issues and a chronic cough, among other non-terminal-but-annoying symptoms caused by medicines that suppress her illnesses.

According to a report published by the National Health Council, nearly half of Americans have at least one chronic illness, with that number expected to grow in coming years. If this number sounds high, it’s worth noting that the category of “chronic illness” can include minor cases of asthma or oral herpes or major conditions like Crohn’s.

The more extreme physical chronic illnesses can make dating seem unrealistic or especially difficult, causing people like Pierce to think, “don’t even tempt me.”

One major issue chronically ill people face in dating is disclosure. The question of when to share the illness with a prospective partner fills online forums, videos, articles, blogs, conferences, and discussions. Sharing too soon may scare the person off and sharing too late may lead to a lack of trust.

Amber Miller, a 26-year-old college student in Oklahoma City, was waiting to tell Josh about her type one diabetes. They had been dating for a month. So when he didn’t hear from her for a month while she was recovering from a diabetic coma, he expected the worst.

“Josh thought I broke up with him because none of my family told him about the coma and he didn’t hear from me for a month,” Miller said. “I was like, ‘Oh yeah, I was in a coma.’”

The classic coma excuse.

In Miller’s case, it turned out okay, even with the misunderstanding—the couple eventually married. But that’s not always the case, which is why the question of disclosure remains a hot topic in the chronically ill community. Some choose to be upfront from the get-go, others wait until things head in the direction of exclusive dating.

Disclosure becomes even more nerve-wracking if the chronic illness is contagious, like Nate Butler’s HIV.

The 51-year-old Denver native has had the disease for nearly 25 years and has dated both HIV-positive and negative men and women since then. And while it's unlikely he would spread the disease through protected sex, he’s had a decent number of people turn him down. He usually tells the person about his HIV after he sees that it’s going to be more than a platonic relationship. Even waiting two or three dates is too long for some people, who accuse him of wasting their time.

Butler has been dating an HIV-negative woman for three months now, though he thinks dating someone with HIV would be simpler. He’s been on many HIV dating sites in hopes to avoid the nuisances of dating an HIV negative person, namely disclosure and condoms.

“Most of us HIV positive people know the online dating drill completely,” said Butler, who owns a small business. “If we like each other, someone’s flying out on an expensive date weekend. In most cases, sex happens more quickly, probably due to not having had it as frequently as they would like to. You don’t have to have the disclosure talk. Then it turns into a joke. ‘Oh by the way, did I remind you I’m HIV positive? Oh, you too? Good.’”

Butler’s on a combination of medications that produce side effects no worse than occasional gas, though they cost him around $2,000 a month. For him, the stigma of the illness hurts the most, which has kept him from approaching as many dating prospects as he used to. He sees his HIV as one more deal-breaker to add to the pile that has stacked higher as he’s gotten older.

Chronic illness is no doubt a deal-breaker for many people. 

On DateHookup.com, the question of whether people would date someone with a chronic illness has come up more than one time in the forums. Some would if they really liked the person. Some would if the disease or illness wasn’t contagious. Some have and realized it was too much for them and won’t again. And then there are people like the person in the forum who wrote, “No, no, and no!!” and explained that she doesn’t want anyone to interfere with her active life.

Freelance writer Sascha Rothchild, in an article on Match.com, considered the question of whether she’d date a chronically ill person. She wrote, “Was I really willing to step into a relationship with someone with health issues when love is hard enough healthy?” In her case, she was, but clearly not everyone is. Or, if they are willing to take the leap, find it too difficult later. There is a statistic—“75 percent of marriages dealing with a chronic illness end in divorce”—that floats around forums and sites like About.com and Focus on the Family, but I was unable to find its origin.

Some people just don’t want to end up caregivers or to mix “that world and this world,” as the girlfriend put it in the film “50/50”—starring Joseph Gordon Levitt as a cancer patient. Others nip the idea in the bud, since they can’t imagine losing someone they love to a disease (even though 7 out of 10 deaths in the United States are from disease according to a report published by the Centers for Disease Control and Prevention.)

These are often the objections the chronically ill face from people who aren’t sick. Karen Swindells, 27, who has epilepsy, says a guy once dumped her right after she had a major brain surgery intended to reduce her seizures.

“He felt like nothing positive was going on in my life at that time,” said Swindells, who works at a college bookstore and is now married. “He couldn’t handle it. It was too much. Too depressing.”

Swindells has up to 10 seizures a month, which is nothing compared to the 15 to 40 she had every day before her brain surgery at age 17. A few have been major, but most are small and stop her functioning for no longer than a few minutes. After she has one, she’s often too tired to do much else, which has ended dates and prevented sexual activity.

How guys responded to her illness in the past helped Swindells separate the quality from the non-quality, though, as she reversed the deal-breaker onto them, using her illness to determine if they were the type she wanted around when things go wrong.

“If my time were cut short, were they the one I wanted to know was by my side or could I trust that they would be?” Swindells asked. “Or if I was left impaired from a seizure, were they someone who would love me enough to stick by and take care of me no matter what? I knew that whoever I married would have to be someone that could be emotionally strong themselves but also for me. It makes the words ‘til death do us part’ have even more meaning.”

Even if someone is interested in them, the chronically ill may not want to subject anyone else to their disease—the potentially debilitating symptoms and depression that follows. This was the mentality of a person who posted on Yahoo! asking for advice on dating, saying she’s never dated anyone before because she doesn’t think she’d be any fun, considering her symptoms (constant headache, seizures, gagging fits, trouble processing new information, etc.). Some people in the comments urged her to stop being so insecure.

Insensitive responses like that aren’t uncommon. Dr. Shanna Reeves, a psychologist in Austin, Texas who works with chronically ill people, has seen clients (she doesn’t like calling them “patients”) who feel alienated by negative comments like these. They think others can’t possibly understand what it’s like to be in that much pain.

The pain and the symptoms can make planning a date difficult, and Reeves has seen her clients struggle with this.

“How do you sign up for a date three days from now when you may have a flare up?” Reeves asked, reflecting the concerns of some of her clients.

For Pierce, her Crohn’s Disease and ulcerative colitis, as well as the medicine she takes to keep the illnesses at bay, don’t allow her to know that she’ll feel okay on any given day. She and Walter don’t go out often. But there’s one day in the not-so-distant future where they both wish she could know how she’ll feel: their wedding day.

“My biggest fear is picking out the wedding dress, since I have no way to predict when I’m going to be heavier or thinner,” said Pierce, whose weight fluctuates depending on which medication she’s on.

Way before wedding planning, Pierce told Walter about her illnesses. She did it up front, before the line between lust and love could blur too much. And he replied with “So?” To which she replied, “Okay, fine. You picked this thing.”

But Walter doesn’t see “the thing,” he sees the person. He is the first guy Pierce has felt doesn’t feel sorry for her, instead just enjoying the moment. And it’s the promise of these moments that the chronically ill—in spite of the pain, fear of disclosure, and fear of rejection—allow themselves to be tempted into dating.