Early in Zack’s relationship with Cara, she warned him that due to her chronic illness, a connective tissue disorder called Marfan Syndrome, some days would be easier than others. After all, she’d already had 18 surgeries in 29 years. “Every day is gonna have it’s own number of spoons, and sometimes I run out,” she explained to him, referencing a theory first introduced in 2003 by writer Christine Miserandino, who has lupus, to describe what it’s like to manage the pain, fatigue and complications involved with suffering from a chronic illness. On any given morning, Cara told Zack, getting out of bed might cost two spoons, a doctor’s appointment might cost five, etc. How many more she had from there was a complete unknown (if she even had that many in the first place). And so, all she could do was keep track of how many spoons she thought she’d used and do her best not to run out. “You just have to remember that,” she said, adding that on “pain days” her silverware drawer would be more or less empty.
Zack, a 39-year-old writer and college professor in Raleigh, North Carolina, was happy to oblige. In fact, he felt the same way about his own chronic condition, a social anxiety disorder related to autism, though the metaphor he preferred was “social battery” — i.e., he could only spend so much time around others before needing to recharge by himself.
Still, Cara’s illness required Zack to adjust what he calls his “bachelor issues.” For example, when he was living alone, he never noticed toothpaste or hair piling up in the sink. But since Cara was prone to infection, such dude-dom debris wasn’t just disgusting to her, it was potentially life-threatening. Also, while Cara could walk short distances with a cane, she was predominantly confined to a wheelchair. Thus, an errant laundry basket in the hall between the kitchen and bathroom could add precious minutes to Cara’s trek to the toilet. And if she did successfully make it, a whole new set of problems arose if Zack had taken a shower earlier and left water on the floor.
To his credit, he made efforts to keep things clean, tidying up before she came over. But presentable wasn’t good enough; it had to be hazard-proof. On that count, he often missed the mark. One time, for example, he’d been reading a book and left it on the arm of a chair; it eventually fell, though, and blocked Cara’s path to the bathroom. “Your place is always such an obstacle course,” she groaned, which frustrated Zack, who’d been doing his best to impress her with his orderliness.
Zack isn’t the only man in America minding spoons. William, a 27-year-old car mechanic in Austin, is also well-versed on Spoon Theory. His fiancée Meredith’s autoimmune disease often leaves her fatigued, swollen and arthritic, making her feel like someone in her early 80s rather than her early 20s. “As her partner, I have to constantly be aware of her limitations so that I’m not expecting too much from her,” he explains. “I’m like, ‘You can’t go riding today [Meredith grew up as an avid equestrian] because you need to make sure we have enough spoons to go out with your work friends and hang out with my family later’ — as much she loves riding.”
At first, William did everything he could to help Meredith. But she quickly explained that when she comes to him with a problem, she doesn’t actually need him to fix it; she’d much rather he commiserate with her and validate her feelings. “That’s been tough for me,” he admits. “But I do my best to respect the way she chooses to address her illness.”
“It’s better to offer empathy instead of strategy,” says Ilana Jacqueline, a patient advocate in Boca Raton, Florida, “which is a hard skill, particularly for men, given how socialized they are to be problem-solvers and action-takers. Instead, though, they should just listen and provide a time and space to vent — no suggestions, no advice.” And no mansplaining.
All of which William was initially guilty of. Case in point: Meredith’s doctors had been checking for a range of autoimmune diseases and given her a bunch of pamphlets, which William studied in an attempt to be helpful. Then, over dinner, he’d say things like, “Y’know, it could be rheumatoid arthritis, but I think it’s more like Sjogren’s syndrome,” sending them down a rabbit hole of horrible illnesses, some of them fatal.
“That was a bad idea,” he admits now.
Yup, agrees Kait Scalisi, a 30-year-old sex 2 from New York City who suffers from a chronic form of arthritis. She says guys shouldn’t barrage partners with naive questions like, “Have you thought of this?” since people in her situation hear shit like that all day. “We’ve done our damn research,” she tells me with more than a hint of frustration. “We’ve tried all the things. So please, learn as much as you can to support your partner — read blogs, accompany them to doctor appointments, join support groups for partners — but don’t tell us how to be with our illness.”
Sometimes, though, being overly deferential backfires, too. It did at least for Jake, a 32-year-old actor in Canada whose girlfriend Bailey suffered from scoliosis and fibromyalgia, the pain of which would sometimes leave her bedridden. Like William, Jake wanted to respect how his partner chose to live with her disease and would regularly take sick days from work to keep her company, often giving her therapeutic massages to work out the dozens of knots that would accumulate in her back. Three years into the relationship, however, Bailey started smoking weed to manage her pain, which changed her temperament. “It became her entire life,” Jake says. “She started acting very aggressive toward me and lost all empathy and compassion.”
Unfortunately, he treated the ever-increasing bong hits like he did the rest of her other medication, figuring she knew best. “I realize now that I dug my own grave,” he says. It turns out she was cheating on him with a guy she’d met at church. A few months later, she married the other guy. “That stung,” Jake says softly.
A 2011 study from researchers in Spain revealed that women consistently report being in worse health than men because they have much higher rates of chronic diseases. While the study didn’t answer why this is the case, it did find that women are overrepresented in everything from musculoskeletal pain, to irritable bowel syndrome and pelvic pain, to chronic fatigue and headaches. And a staggering 75 percent of Americans with autoimmune disease are women, per the American Autoimmune Related Diseases Association. Not to mention, for some of these diseases, like lupus, the number is more like 90 percent.
Lili, a 22-year-old college student in Georgia, is among them. In May 2017, she was diagnosed with systemic lupus, which presents itself in a slew of unpalatable ways. Her Raynaud’s disease flares up whenever she’s in the cold, her fingers and toes turning white because the blood runs out of them, which, in turn, causes joint pain. Further, due to a severe vitamin D deficiency, her chronic fatigue is ever-present, no matter how much sleep she gets.
It was all too much for her last boyfriend, who prided himself on his fitness regimen. When Lili complained of decreased energy, he’d urge her to “workout with heavy weights,” as that had worked for him in the past when dealing with fatigue. “He watched me drop from 140 pounds to 115,” she recalls with a sigh. “It was terrible, and I was really depressed.” The communication only worsened in the bedroom. “He was disappointed that I couldn’t have sex as often as we used to,” she says.
“You don’t smile or laugh anymore,” he told her when he broke up with her.
Shortly thereafter, Lili was introduced to her current boyfriend — Derek, a content developer in his 30s — whom she’s dated for the last two years. He’s “wonderful,” she says, relieved that he’s yet to show signs of caretaker burnout.
“Of course not,” he proudly declares, before adding, “This girl is really great, and her struggle is nothing I can’t handle.” It’s just a matter of anticipating her needs and going with the flow, he tells me. For example, Lili has a hard time getting clothes out of the washing machine so Derek does the laundry. “It’s no big deal,” he says. “But a selfish guy isn’t going to be able to do this. Because it’s not about what you feel like, it’s about what we feel like.” He also shrugs off any questions about Lili’s libido: “I’m happy to report sex isn’t a problem for us.”
Regarding sex, Scalisi, the New York-based sex educator who specializes in clients like Lili and Derek, recommends that the men in these relationships revise their expectations around what constitutes “good sex.” “Society teaches us that the only real sex is penis-in-vagina intercourse, and that if you’re not having it all the time, you’re somehow broken,” she says, suggesting guys think more creatively. Sensation play, for example — taking away a sense so the others can be maximized — can be particularly effective, which could involve rope play or blindfolded spank therapy.
In fact, many of her chronic-pain clients enjoy being flogged because it helps to reset the brain’s pain sensors. “It sounds counterintuitive because they’re living with pain, but impact play like BDSM offers a lot of relief,” she notes, adding that strong vibrators are great for women dealing with dulled senses, often a side effect of certain medications and conditions. For those with physical limitations, she recommends a variety of sex furniture and positioning aids. “If getting into certain positions is a struggle due to joint pain or paralysis, shaped pillows can help prop hips up and support the head, neck and back. They’re waterproof and have a machine-washable cover so you’re not ruining all your pillowcases and towels. Similarly, latex sex blankets and puppy pads are great for anyone who is dealing with incontinence.”
In Chip’s case, his wife Rita developed Muckle-Wells syndrome, a rare genetic disease that causes hives, chronic pain and hearing loss. As a result, the woman the 44-year-old Houston lawyer fell in love with 10 years earlier was suddenly half deaf, proving problematic for one of their preferred kinks — dirty talk. Whenever he’d whisper something naughty in her ear, her hearing aids would feedback, immediately killing the mood. Similarly, one of his go-to filthy flirts — “I want you to suck my dick right now” — posed its own limiting consequence. Because Rita’s condition left her overly susceptible to infections, she was hyper-cautious about any sexual activity that would lead to abrasions, particularly in the mouth. And so: “There’s no more oral sex in our sex lives,” Chip says defeatedly. “It’s frustrating because it’s just one more thing that’s been crossed off our list. I want to have sex all the time, but she’s exhausted most of the time.”
As for Zack, while he’d succeeded in keeping most of the hairy toothpaste out of the sink and errant laundry baskets out of the hallway, it wasn’t enough to puncture the real stressor in his and Cara’s relationship: Their health. For Cara, too. That is, she’d grown equally afraid of not being able to handle his autism.
“I think we should break up,” Zack said.
“I think we should break up, too,” she agreed.
Nonetheless, Zack remains open to dating someone with a chronic condition again. If anything, being with Cara proved to him that the tough stuff in life could be viewed as a gift. “In the end, despite all the limitations, we were just two people who wanted to love and be loved,” he says. “And each of us still cared enough to be afraid to be the one to walk away and let the other go. Sometimes, though, you just have to admit that you’ve run out of spoons.”