It was early summer, and I’d been sitting on the sofa, sort of reading a novel, when the text came. “Do you fancy going out sometime?” it asked. I was thrilled; it was from a guy I’d recently met who I was hoping would ask me out. But before I could answer, another text came through. “Maybe grabbing some lunch?” he asked. That’s when I freaked out.
Severe anorexia had taken over my life for a long while, and although I wasn’t better yet, not by a long shot, I was firmly in the recovery phase. I was just starting to expand my horizons and do all the things a normal woman in her 30s does—including dating. But it was fraught with challenges. Who would want to date a girl who cries over hermeal? And while many women struggle with body image, I struggled with the fear that someone would like my body—I still had weight to gain, so what would they think when I did?
Meeting someone for lunch, in a restaurant, posed all sorts of additional problems. For one thing, we’d have to meet at exactly 11—after my pre-planned snack, and before my pre-planned lunch. Because my meals have to be prepared by me and eaten at home, we’d have to go someplace near enough for me to get back in time to eat. That left one specific café, where we met for coffee instead of a meal—mine black, the only way I’d drink it.
As it turned out, the date was great. We soon began a relationship, and I was able to be upfront about my anorexia early on. But my boyfriend faces challenges due to my illness, too. Like the time I had a mini meltdown when he lent me some jogging pants that didn’t fall down, prompting me to panic that I was fat, and him to wonder how his kind action had ended in disaster. He has had to adapt to a much more structured approach to eating, and become more aware of the language he uses around food because the smallest slip can trigger me. And everything we do has to have my meal plan as a key consideration.
I’m not the only one whose illness, current or past, makes dating difficult. Dating comes with numerous emotional, practical, and social considerations, and a long-term illness can add additional challenges to a relationship—such as making it difficult to arrange a time to meet up due to medical appointments, or not being able to afford a nice dinner out if your condition prevents you from working. That’s not even mentioning the emotional vulnerability that comes with opening up about the effects of an illness. Both physical and mental illnesses can take their toll, but dating while managing or recovering from an illness can also be rewarding.
Many women with long-term illnesses say that it has a major effect on their self-esteem. It’s this that stops Karen, ayoung woman in her 20s with chronic fatigue syndrome, from dating. “I know that I struggle with internal dialogues of self-worth with having a chronic illness, and the thought of dating—it’s a battle of feeling like no one would want to buyinto that from the beginning,” she says. “When I think about marriage and stuff, even though it’s the whole ‘for better or for worse, in sickness and in health’ thing, it’s hard not to feel like, ‘well yes, that’s true, so if I became chronically illafter we were married, that’s when that would kick in, but to invoke that before you even begin is too much of a price to ask someone to pay.'"
“To be honest, I’ve never met anyone who cared enough to be attentive and gentle enough to make sex enjoyable.”
Clare, who is in her early 50s and has Parkinson’s, does date, but deals with similar thoughts. She has a hard time even getting dressed for dates, she says, “and then when I’m there, things can be going well, but I will start trembling and feel self-conscious and stupid. I’m very aware of my left arm. It hangs in a way that I think makes me look very sick, and I’m so aware of it, that I spend the whole date worrying about it.” Clare has also had to manage depression in the past, and during one low period, she broke up with her boyfriend. That’s probably not a surprise to anyone with depression—it can cloud your thoughts and judgment, leading you to make rash decisions that are not based on the realities of your relationship.
In a society where we’re often defined by our careers, a chronic illness can have a major impact on identity. One of the main questions we ask anyone when we meet them is, “What do you do?” By that, we don’t mean, “What do you do with your time that lights you up and makes you feel like you’re living?” but rather, “What do you do for paid employment?” Many people with chronic or long-term illnesses are unable to work, or can only work limited hours, and as work is one of the ways that we define ourselves, this can have a significant impact on identity. Karen isn’t a fan of that “very first icebreaker of a question that makes me want to curl up and die—‘So, what do you do?’” she says. “Straight away, you have no other option than to explain that you’re actually sick and can’t properly work, so nothing right now...which ties really nicely into the self-worth stuff, the realities of not wanting to be a burden physically and financially, as well as not wanting to appear weak.”
Both Clare’s and Karen’s fear that potential dates will judge them based on their illnesses aren’t unfounded; many women have faced prejudice and cruel comments about their illness while dating. Helen suffers from chronic pain, as well as chronic depression (dysthymia) and body dysmorphic disorder. She has tried online dating, and is open and honest about her illness in her profile. Whenever she speaks to someone new online, she tells them that she has to walk with a cane. Not everyone responds, showing how judgments are quickly formed. “One man said to me, ‘So, you are limited—what are your solutions?’ as I couldn’t travel far to see him due to exhaustion,” she says. “This made me feel inferior and an inconvenience.” People form opinions based on her appearance, and not always nice ones. “I recently went to a traffic light party [an event where you wear red if you’re in a relationship, yellow if you’re up for persuasion, and green if you’re single and want to flirt], and was pointed at and called out by men,” she says. “I was embarrassed and hurt.”
There are also the physical effects of an illness to take into account. Helen’s chronic pain impacts all aspects of her life—to put it bluntly, sex hurts. “To be honest, I’ve never met anyone who cared enough to be attentive and gentle enough to make it enjoyable, so yes, there are struggles there,” she says.
Chronic illness can test a relationship financially, as well, when one person is unable to work—or is restricted in the length and type of work they can do—and therefore can’t contribute as much to the household budget. It’s not only that people are missing out on working in the present, but also that they won’t be contributing to retirement funds, and so will continue to rely on the other partner. Chronic illnesses also cost a lot to manage, as doctor visits, medication, and support all add up. A smaller—or no—income and increased expenses take a financial toll, and place stress on a relationship that may already feel out of balance. There’s also the emotional toll financial inequality takes on a relationship. Partnerships where one person has an illness can feel unbalanced, and the couple can risk moving from equal partners to the carer and cared for.
“When you’re sick, ?you spend a lot of time being cautious about who you show the realities of the illness to.”
All this means that many women may be reluctant to be open about their chronic illness while dating—you don’t want a new and exciting relationship to collide with the grim realities of your limitations. “It feels like, when you’re sick, you spend a lot of time being cautious about who you show the realities of the illness to,” Karen explains, “so it’s a massive vulnerability to have to bare your deepest insecurities very quickly. To let down that mask even a little bit is a real risk. There’s no way around ripping that plaster off early on, and so for me I’d probably rather steer clear of the situation.”
Dr. Michelle R. Hannah is a relationship coach, and has worked with many people tackling dating with an illness. Hannah’s experience as a cancer survivor informs her work, and she has also had adenomyosis, endometriosis, fibroids, and pudendal neuralgia. After Hannah’s first cancer diagnosis, her partner pulled away from the relationship due to being unable to deal with her illness. This is, unfortunately, not an uncommon occurrence. According to a 2009 study published in the journal Cancer, women who were diagnosed with a serious illness were seven times more likely to become separated or divorced as men diagnosed with similar health problems.
After a period in which she took time off from work and dating to focus on her own needs and health, Hannah met her husband, and chose to have the illness conversation early on. “It was a tough conversation, but his compassion and commitment made it easier,” she says. “Knowing we could both be transparent with each other helped immensely on the days that I was at a pain level of nine on a scale from one to ten. After four major procedures before we were married, I knew that we were both committed to the traditional wedding vows before we took them.”
Hannah says that it’s important to consider the status of the relationship before sharing many details. If it’s just about having fun, perhaps there’s no need to divulge, but if you’re planning on long-term commitment, then both partners need to be aware. Once you realize that you are both on the same page regarding the direction of the relationship, it is a good time to introduce the topic. They obviously have to be the right person. Hannah has a few questions that she thinks are important to ask: “Are you both committed to vulnerability? Is your partner compassionate and considerate? Is your partner dedicated to doing the research in order to be educated about your condition? Are you committed to doing the things necessary for you to live your healthiest life regardless of not being clinically healthy?” She explains, “When two people are vulnerable, they are dedicated to honesty; therefore, there’s no need to hide information about your health that is sensitive or that can feel embarrassing to share.”
Your illness doesn’t have to be something to be ashamed of, and your partner can become a support and help you and your relationship be healthy. “If your partner is compassionate, they will understand the side effects of medicine, your capacity, and your emotional state,” Hannah says. “Two heads are better than one when you’re both dedicated to the goal being optimal health, and that’s why both of you educating yourself is vital to the health of the relationship.”
Having an illness as part of your life can force you to address issues in your relationship head on, and fast—which can be a positive. “Chronic illness, or recovery from one, is one of the toughest challenges that one can go through,” Hannah says, “but when you have someone who is dedicated to assisting you to achieve optimal health and who wants to love you through, it makes the journey so much more meaningful.” People who are happy to support you in recovery or management are likely in for the long-term. “Oh yeah, I wouldn’t do this if it was just a fling,” my boyfriend said when we were discussing this article. It helps you weed out the ones who matter—and who think you matter.
By Francesca Baker
Illustration by Bee Johnson
This piece originally appeared in the January/February 2019 print edition of BUST Magazine. Subscribe today!
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