Some women with chronic illnesses don’t plan to ever be in a relationship, while others are unsure how to go about things. Sarah Lang talks to one woman in this quandary about the hardships of dating with a chronic illness – and to another one who found Mr Right.
Welcome to our series, The Love Diaries – a space for you to share your experiences, advice, fairy-tale endings, setbacks and heartbreaks. We’ll be hearing from industry experts giving practical advice alongside Capsule readers (You!) sharing your firsthand experiences with love – from the woman who cheated on her husband with a work colleague, one woman’s temptation now the love of her life is finally single (although she’s not), and the woman who forced her husband to choose between her and his girlfriend.
Dating is hard enough without having to drop a ‘hey I have a chronic illness!’ into the conversation. In fact, several women I spoke to – who have conditions including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, post-treatment Lyme disease syndrome, and Long Covid – said they plan to never have a romantic relationship should they remain sick. We’re talking about chronic illnesses that aren’t fatal but currently aren’t curable, and have a significant impact on how you live your life.
Women with chronic illnesses who plan to never have a romantic relationship have pretty similar reasons as to why. They don’t want to be a hassle, a pain, a burden or a downer. They don’t want to crimp someone else’s lifestyle. They don’t want a potential partner to be disappointed by them or grow to resent them. And they assume that no one will be interested in them in the first place.
Cassie*, a 23-year-old accountant from Wellington, has Crohn’s disease: a sometimes-debilitating inflammatory bowel disease where symptoms often include abdominal pain and abdominal distension, diarrhea and fever. “I just assume that no one would want to be with me. Why would they, when they could be with someone healthy? Whoever it is, they can do better than me. I’m not dissing myself as a person, just being realistic about how my illness might affect someone else.”
“First and foremost, I don’t want to be a burden on someone. I wouldn’t want to have to cancel plans because I’m feeling unwell. I wouldn’t want to stop them from going out and having fun, but also I wouldn’t want them to have to stay home with me. I wouldn’t want to feel like I had to apologise for my condition. I would never want anyone to resent me. But I’m also devastated that I’ll never be in a romantic relationship.”
Social Stigma Of Chronic Illness
In an article called ‘Chronic Illness and Relationships: Dating With A Chronic Illness’, Myriame Lyons writes that “while there are many movements aimed at reducing the stigma of chronic illnesses, there is still a long way to go. Stigma, like other factors, contributes to an altered perception of the self. If you have learnt through social and cultural views that illnesses are ‘bad’, you might internalize this idea and believe that you are ‘a bad person’.
“Subsequently, this unhealthy thinking pattern can further isolate you from others, and the dating world. These beliefs aren’t your truth. They are part of larger unhealthy systems that are beyond you. Come back to the person that you know is you. You are more than your illness.”
These are my own musings: what if, as a society, we could recognise that any potential partner comes with challenges, and that chronic illness is just one of them? What if someone with a chronic illness felt empowered enough to try to meet someone? What if the person they met proved to be understanding and supportive?
When Do You Bring It Up?
The first, major hurdle is when should you bring up your chronic illness. On your first date? Second date? Before you even have a date? On your profile in a dating app?
Many people think you should disclose it fairly early so that the other person has that information before becoming invested. However, others think you shouldn’t feel any pressure to disclose it until you feel comfortable.
In a story called ‘How to Talk To A New Dating Partner About Your Chronic Illness and Disabilities, According to Health Psychologists’, Dr Laurie Ferguson, a clinical psychologist and vice-president of research and education for Global Healthy Living Foundation (a non-profit working to improve the quality of life for people living with chronic illnesses) says “in the initial stages, depending on how much your illness impacts your daily life, you can wait until you feel like the relationship is a go.
“It’s like anything else about us that we consider private, like a previous relationship or finances. There is no reason to feel like everything has to be on the table [during] your first couple dates or even months of dating. If it is difficult for you to explain your chronic illness, take notes with bullet points about what you’re going to say, and bring those notes to the conversation’.”
There’s no one right time or right way. It always depends on the context.
Online Dating & Chronic Illness
A New York Times story explains how psychology professor Dr Elizabeth Mazur surveyed people with debilitating health conditions about their online-dating experiences and when they chose to share information about their health.
Mazur’s findings suggested that online dating can be a way for people to determine their own strategy and timeline for disclosure. Some study participants didn’t share information about health on their dating profiles, while others did. Some people included information about their illness on their dating profile as a ‘screener’.
Certainly, disclosure at this point means you’re not going to waste energy on someone who won’t be interested. However, if they don’t swipe right because of your illness, how can they know whether they a) like you romantically and b) can actually handle your illness in real life?
Finding A Supportive Partner
When she became ill nine years ago, Maya* was an outgoing, single 26-year-old who worked in marketing.
Suddenly, after not recovering properly from a flu-like infection, she found herself feeling more tired and rundown. “I had such limited energy,” Maya explains, “and my flares of flu-like symptoms meant that, at one point, I had to spend as much as a week in bed each month.”
After many months of seeing doctors, she was told she probably had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (C.F.S/M.E). “There’s no diagnostic test, so you have to go by the nature and onset of your symptoms, and a process of elimination [of other possible illnesses].’ There’s no cure; you have to manage your symptoms and pace yourself.”
When she got sick, Maya had to go on the sickness benefit for two years (until she finally found some part-time work which could be done from home if necessary).
When Maya’s health improved a little, her closest friend suggested that she try to meet someone. “I was reluctant,” Maya says, “but she talked me into it. I couldn’t go out drinking so I figured that dating apps and going for coffee would be the only way. It took me maybe three months to build up the courage.”
Maya didn’t mention her chronic illness on her dating profile. She did write that she preferred quiet nights at home. “I knew I’d have to bring it up pretty quickly in real life.”
On her first date, they didn’t click so there was no reason to tell him anything. “On my first date with someone else, it went really well. I didn’t want to tell him straight away – like, I wanted him to get to know ME rather than M.E. I told him on our second date, and he looked uncomfortable and didn’t say much apart from ‘oh that sux for you’. He wasn’t interested anymore.” That also happened with another guy.
Maya felt like giving up, but tried the apps one more time. She met a guy who was sweet, quiet, and interested. The first date over coffee went well. On their third date, she told him about the C.F.S/M.E. “He asked lots of questions about what I could and couldn’t do in life, but he wanted to keep seeing me.”
Two years later, they’re happily living together. “I still think at times ‘why does he want to be with me?’ but he says he doesn’t see me as a sick person, just as someone he loves who has some health challenges. He’s a good reminder that I’m more than just my illness. He tells me the things he likes about me – that I’m funny and empathetic. And he says ‘well, you have to put up with my messiness, my snoring, and my gluten intolerance!’.
Maya would like other people who have chronic illnesses to know that a relationship could await them (should they want one). “Our illnesses don’t define us. We can still be good partners with plenty to offer.”
