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chronic love: dating, sex and living with illness

dating is already hard. add a chronic illness to the mix, and well, it can be hell.

by sadaf ahsan

feb 14 2022

10 minute read

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chronic love: dating, sex and living with illness

grayson schultz (right) and his partner. supplied

grayson kirsten schultz recently had “the conversation” with the person he’d been seeing for six months.

“i normally do it earlier in a relationship, but i was filled with anxiety about how that conversation would go, especially as we’re long-distance,” he says.

the discussion mostly came down to “my arthritis type can kill me.” schultz, who is based in wisconsin, grew up with systemic juvenile idiopathic arthritis . in adults, that’s still’s disease , a rare type of inflammatory arthritis that can have fatal complications. but schultz is more than a diagnosis. he’s a writer, sex educator, activist, goalie and chronic disease prevention communication specialist. the conversation with his partner helped him feel seen in a way he hadn’t experienced in other relationships.

“we wound up having a really good and in-depth conversation about things i went through as a kid and how scary my arthritis can be, including how it can be fatal.

“that’s a hard conversation,” schultz says. “but they really held space for me to talk about my fears, concerns and anything they could do to help. the way they responded, with questions and a ‘what can i do or watch out for’ mindset — it was the first time in 27 years of being sick that anyone really met me where i was.”

it’s the kind of simple, moving sentiment many of those living with an illness hope for. frankly, understanding and support are what anyone hopes for in the dark, dreary waters of modern dating. but when you add a chronic illness to the mix, there are additional variables to consider. for example: “should i tell them about my illness straight away? if the date does go well, will i have the energy to have sex? what if everything goes really well, but then i tell them about my illness and they bail?”

so says chloe sargeant, one-half of the australian pair behind the podcast chronically fully sick. she and her co-host joanna nilson both live with fibromyalgia, which is characterized by widespread physical pain, and chronic fatigue.

“you do have to be picky and choose who you spend your time with wisely, because you have energy that’s more limited,” adds sargeant. “i constantly feel like elaine in that episode of seinfeld where she has limited contraceptive sponges left and has to be super picky over whether someone’s ‘sponge-worthy .'”

chloe sargeant and joanna nilson host a podcast about living with chronic illness. supplied

liz montgomery , a new york-based nurse and screenwriter, has not been in a relationship since 2012 because she’s found the dating world to be a landmine since recovering from abdominal cancer.

“when i was in and out of the hospital, it was very difficult and i was lying to potential dates,” she says. “if i was in the hospital suddenly, i would tell them i was away on vacation. i am not in a relationship now, which could partly be on me, as i sometimes think, who would want me — a body all scarred and damaged?”

“i used to be terrified to tell people what i was going through,” says montgomery, who says she knows this isn’t a healthy mindset. “some men i dated told me they thought i was cold or not interested in them because they could tell i was hiding something. other men later told me they were afraid i was going to get very sick again one day and they would have to take care of me financially.”

adam polak, a london, ontario-based former flight attendant and horticulturist, lives with ulcerative colitis. when he last dated, in 2014, it had not yet been diagnosed but was already in a serious state. at the time, polak also had a severe anxiety disorder, panic disorder and agoraphobia.

“i elected to end the relationship i was in at the time since all it was doing was adding another layer of stress to my life,” he says. “the person i was with knew something was awry as intimacy between us was being affected, but i didn’t want to tell him about the awful symptoms i was having.”

polak now feels quite independent and hasn’t been on a date since. intimacy just isn’t high on his list of priorities as, today, he lives “with a lot of complications,” including persistent gastrointestinal issues and chronic pain. dating him, he says, would mean needing a bathroom nearby at all times and oft-cancelled plans.

“unfortunately, my quality of life is relatively poor and i can’t imagine sharing it with someone,” he adds. “i don’t think it’s fair for someone else to have to take that on and into their life. i mean, how do you tell someone? do you start a dating profile and list all the gory details and hope a sympathetic soul will take pity? or that someone with their own collection of chronic illnesses will tick all the boxes? call it a fear. finding another soul who’s as sick as i am. what is that? misery loves company? no thanks. … i wouldn’t date me.”

polak says he’s well aware that he might sound “bitter,” and perhaps too hard on himself. but he insists he’s just being “realistic,” and that acquiring intimacy in his condition sounds like too big a hurdle.

the fear of being considered “high maintenance” and a “burden” to a potential partner before having even reached a second date is a common one. as is a fear of being misunderstood, largely due to an ancient othering of chronically ill and disabled people.

“the amount of ableism that we encounter usually increases drastically when we’re in the process of searching for a partner,” says schultz. “that can range from people not swiping right on us because we’re sick, and even questions about our sexual function without so much as a hello first.”

he notes a few misconceptions, including being partners “who take and never give.” but there’s a balance as there is between most couples. as nilson puts it, “everyone has their baggage in relationships, whether that’s emotional baggage or physical baggage. nobody is baggage-free as you get older. fibromyalgia is just something that comes with the package of me, and other people may have something that comes with the package that’s them. my partner’s bag could have crippling social anxiety, a difficult family or a bad heart. everyone’s got their thing.”

then there’s the idea that all chronically ill people are asexual. “it’s a silly assumption to make that we don’t enjoy or want sex, there are a ton of us who are incredibly sexual,” says schultz. especially considering that 44 per cent of canadian adults over 20 have at least one of 10 common chronic conditions, including heart disease, cancer and anxiety disorders.

a number of health agencies that specialize in specific diseases and disorders offer tips for dating and intimacy. the canadian digestive health foundation, for example, suggests planning dates around activities instead of food for people with irritable bowel syndrome. or if you’re good with a knife (in the kitchen, that is), cooking a meal together can offer a bit more control over what you eat compared to going out for dinner, which isn’t much of an option today anyway.

arthritis research canada offers some dating guidelines too, including having a list of alternate activities in case you’re having a painful flare that sidetracks your plans. the research centre even notes that having a discussion on arthritis can act as a potential “screening tool” for whether would-be suitors will stick around in harder times.

and when it comes to the bedroom, beyond type 1, a u.s.-based diabetes non-profit, suggests keeping a well-stocked nightstand . that means having things like granola bars, juice boxes or glucose tablets within reaching distance in case your blood sugar drops.

but while being ill might not make dating any easier, it also doesn’t make discussing sex much simpler, particularly as sex education and the media have little to offer when it comes to representing just how different intimacy can be between different people.

“there are a lot of scripts and norms that we have about what sex is and how sex will unfold, and many of those scripts look different when you have a chronic illness and/or disability,” says jessica wood, a research specialist at the sex information & education council of canada . “we don’t get a lot of examples or positive representations of sex and illness and/or disability to draw from, so people with disabilities often have to create new scripts on their own, which can be both liberating and challenging.”

wood’s lens is a refreshing one, as she sees being someone with a chronic illness as an opportunity to break down social norms about who gets to be sexual and reshape traditional conceptualizations of what sex is. as this normalization happens, the hope is that these conversations will feel more comfortable, which requires active communication from all parties, along with empathy and understanding.

“what feels good one day may not work another day, especially if the person is experiencing exceptional pain or side effects from medications,” says wood. “try to put aside expectations of what sex ‘should be’ and focus on what sex ‘is’ for you and your partner(s), what feels good for you and how you want to do it together in ways that work for your bodies.”

as far as disclosing what you’re living with, there’s a strong consensus: don’t feel pressured to blurt it all out on the first date. while there is no right or wrong approach, it’s best to wait until you trust your partner. past experiences, of course, can make all of this even more difficult. schultz encourages approaching disclosure like sex ed: slowly while gradually increasing the information shared.

not that those who might not understand what you’re sharing right away are always in the wrong. kylie maslen , the australian author of show me where it hurts: living with invisible illness , a bit of a bible for people in the same boat, says when she reveals her illnesses (which include endometriosis and chronic pain), “it can come as a shock to some, which is a completely valid response. giving a partner time to process what you’ve just told them, letting them know that questions will arise and that you’re happy to talk things through is important.”

however, she adds, “it has been really confronting dating in the last few years while my physical and mental health have both been declining quite dramatically, but it has made me firm in what i will and will not tolerate. dates who have encouraged me to ‘just have one drink’ or have mentioned that i’m on too many meds — in the bin. anyone who has said they don’t believe either mental or physical illnesses to be real? in the bin, lid firmly shut.”

while many do use dating apps, not everyone is a fan of those specifically focusing on certain illnesses. that list includes cancermatch , diabeticdate , no longer lonely for those with mental illness, gutsy for those with ibs, and prescription4love for all of the above. while these may seem heaven sent as people who are ill themselves (or have family who are) can sometimes be the most understanding, these apps can often feel like a kind of “segregation.” as schultz says, “[they don’t] gel well with the way that disability justice frames and recognizes the disabled experience.”

the covid-19 pandemic has made dating even less of a priority for many, and sharpened the needs and desires for some. in general, there are some tips to be shared. maslen says that, while she doesn’t explicitly note her illnesses in her dating profile, all of her listed hobbies are sedentary types and she tends to swipe “no” on those who appear outdoorsy, which likely wouldn’t be a compatible lifestyle. sargeant’s profile, on the other hand, includes a photo of herself holding up an essay about chronic illness. she says, “that sort of transparency and ‘like it or leave’ attitude is a really difficult thing to do, but it’s a battle worth fighting.”

still, there is no correct way to be in the dating world. it is, simply put, a special kind of hell. whatever makes you comfortable is the best approach, so long as you remember one thing, adds sargeant: “you’re gonna meet a lot of crappy people in the world of dating, but that has nothing to do with you, your body, your self-worth, or your worthiness of love, sex or companionship. i love myself with fibromyalgia as much as i do without it, so if someone doesn’t want to be with me because of it, that’s their damn loss.”

sadaf ahsan is a toronto-based culture writer, editor and stereotypical middle child. she can be reached here.

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