How to Prevent the Caregiver/Patient Dynamic from Taking Over Your Relationship 

All relationships involve an exchange of care, but taking too much responsibility can overshadow the romance.

There is no denying that living with a chronic illness complicates romance.

It causes us to miss planned dates, necessitates conversations about how our bodies are affected, and leaves us vulnerable to being judged according to society’s countless misconceptions about people with chronic illnesses and disabilities.

Annoyingly, once you get past all those hurdles, there’s another one that you need to surmount without tripping over its relationship-killing barbs: the caregiver/patient dynamic.

All relationships contain some element of caring and being cared for — after all, it’s one of the reasons we seek love in the first place. However, sometimes this dynamic can spiral out of control when one or both partners have a chronic illness or disability such as psoriatic arthritis.

When this particular relationship trope is allowed to invade unchecked, it makes it difficult to keep romance separate from necessary care.

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What is the caregiver/patient dynamic?

Whether it’s familial, friendly, or romantic, every relationship involves an exchange of care. We look after each other physically and emotionally in various ways.

In a partnership where one or both people have a long-term medical condition that affects daily life, these caring behaviors may arise more frequently, particularly in an “interabled relationship” in which one person is nondisabled and the other has a chronic illness or disability.

This may involve the nondisabled partner providing emotional support at doctor’s appointments or taking on more physical labor duties in the home, such as by doing a larger percentage of the housework.

These duties in isolation are not an issue. However, the caregiver/patient dynamic arises when one or both partners feel as though the relationship has become defined by medicalization instead of romance.

In essence, the intimate, romantic aspect of the relationship is overtaken when the caregiver/patient roles become the dominant force.

“A hidden illness or disability can be a huge source of shame and disconnection in a relationship,” says Charlotte Fox Weber, a psychotherapist and the author of “Tell Me What You Want.” “If it’s acknowledged and mutual in approach, fabulous. But sadly, the dependence — physically or emotionally — is a potential seed for resentment.”

Sometimes the fear of feeling like a burden in a relationship stops chronically ill and disabled people from engaging in dating or opening up to their partner about their experience.

“Many of my clients describe such a strong fear of their partner becoming their caregiver that they become very guarded and do not allow their partner to do anything, even though transferring of care is quite normal in any relationship,” says clinical and health psychologist Kaley Roosen, PhD, C.Psych. “Often, disabled and chronically ill persons will discount other types of care that they provide to their partner, including emotional care, as not valid.”

Measuring the impact of the dynamic

Initially, the dynamic may not appear to be an issue. In fact, some people lean into it because the additional support allows them greater freedom by alleviating the stress of daily life.

“There can be a fantasy of rescuing and being rescued, which is rarely, if ever, truly possible. And though it can be connecting initially to have reliable nurture, caring for someone can threaten adult romantic relationships,” says Weber. “It’s really important to maintain and recalibrate a sense of equal adulthood at different times.”

Dealing with the impact of societal judgments and preconceived notions is frustrating too. Many assume that chronically ill people cannot enjoy fulfilling romantic relationships. The assumption that they bring little to a romantic relationship can erode a chronically ill person’s confidence, eventually invading even the happiest of connections.

“Navigating societal stigma and stereotypes, such as the nondisabled person being some kind of hero or saint for being with the disabled person, reinforces feelings of inferiority in the disabled or chronically ill person,” says Roosen. “This can be particularly damaging for the couple and also put the disabled person at risk for abusive relationships.”

In the disabled person, this may manifest as struggling to express their needs to a partner for fear of being seen as ungrateful, experiencing feelings of inferiority in the relationship, or becoming hypervigilant toward their partner’s feelings.

When the caregiver/patient dynamic becomes the defining element of a relationship, it may affect sex too.

As Weber says, “When support feels like a stand-in for parents, it can be desexualizing.”

Laying the foundation for a healthy partnership

It’s both of your responsibility to curate a functioning relationship that takes care of both of your needs.

A nondisabled partner should demonstrate a desire to understand your experience, but if your partner is not chronically ill or disabled, you may need to take the first step.

Adam Lyons, a dating expert and the founder of Ask the Dating Coach, who has worked with various disabled and chronically ill clients, says one client “thought because of his facial disfigurement he’d never find love, but the real impact of that was what he believed, not what others around him believed.”

“He couldn’t lead them in how to treat him, and they couldn’t lead because they had no experience,” Lyons continues. “Unfortunately, it does lie with the person who has the disability because they are the person with the most experience dealing with it, so they are the ones who have to lead.”

Early in dating, discuss what a partnership would look like so that no unhealthy behaviors can enter uninvited and no one is surprised by the other’s expectations of care.

Breaking the dynamic

If you’re already in a relationship where the caring aspects have eroded aspects of romance, then it’s time to open your mouth and communicate.

“It’s never too late to reconfigure the give-and-take of a relationship,” says Weber. “Romantic connection and disconnection happen all the time, and making them a priority allows for reparation and protection of the relationship.”

“Needing care is hard for everyone, and it’s important to be open to reviewing and adjusting responsibilities,” she adds.

Contrary to what some TikTok relationship experts claim, a healthy relationship requires work to maintain. Life is chaotic, so it’s easy to start neglecting one another or to fall into toxic patterns of quiet resentment.

Regularly set aside time to check in with each other and ensure that everyone’s needs are being met.

“A negative communication pattern couples can get into is not bringing up their concerns or feelings because they are either afraid of hurting their partner or they feel like there is no ready solution, so there can feel like no point to bringing it up,” says Roosen. “Even if there is no obvious solution, your partner can still listen, validate, and perhaps discuss potential solutions for the future.”

Remember that a partnership is just that — a partnership. You work together to solve issues, not against one another.

Reigniting the romantic spark while maintaining care

A spark needs nurturing to ensure that the romance keeps growing and flourishing over time. Invest in one another by dedicating space for reconnection, separate from caregiving and managing symptoms.

Whether it’s a full-on date night or just an hour to cuddle and talk, it will help remind both of you that this partnership was forged based on love and mutual respect.

“Seek out support and plan for other support if needed, like getting on waitlists or developing more community support,” says Roosen. “Listen to one another and validate needs, even if there is no immediate solution. Read books on caregiving from a disability justice perspective to help redefine what might work for you and your relationship.”

Managing guilt and redefining relationship standards

An interabled relationship may oscillate between caring and being cared for, as all relationships do. But don’t allow guilt to take over — no relationship is 50/50 all the time, because that’s an impossibility!

So let go of it and focus on building a partnership that takes care of both your needs.

“Do not be influenced by ableist standards of what a ‘good, normal’ relationship is,” advises Roosen. “You have to figure out what works for you and your partner. Also, don’t dismiss the multiple ways that people give care, such as emotional caregiving, which is often not seen as valid in ableist standards of care.”