All relationships involve caring for a partner. Sometimes you’ll need them more than they need you, and vice versa. Mutual care, and respect, are key parts of maintaining synergy in a romantic relationship. However, when living with a disability or a chronic illness, striking the right balance between being cared for and caring can be precarious.
If you have a long-term mental or physical condition that affects daily life, it’s inevitable that you’ll sometimes need a romantic partner’s help more than they need yours. This help can be physical, like washing the dishes or grocery shopping, medical, dosing out medications and driving you to doctor’s appointments, or emotional support.
A sad side effect of this is that “interabled relationships”–where one partner is disabled and the other is not–can fall prey to a carer/patient dynamic. A romantic relationship becomes overshadowed by the non-disabled partner taking on a carer role and the disabled partner devolving into playing the role of a patient.
This is not always the case, though. Non-disabled and disabled people do have healthy relationships where the need for one partner to play a carer role does not bleed into the romantic relationship. But for some of us, it becomes a dominating force that obliterates everything else.
Living and Dating with Chronic Illness
The carer/patient dichotomy is a dynamic I never encountered until entering a long-term on/off-again relationship.
Having always been a hyper-independent person when my disabled chronic health issues began to take over my life, my desire to take care of myself, by myself, went into overdrive.
I live with an array of conditions but the current headliners are a nerve pain condition called fibromyalgia, an autoimmune disease known as localized scleroderma, complex-post traumatic stress disorder, and endometriosis, a gynecological condition that I underwent surgery for last year.
I often handle my conditions by “compartmentalizing” them, meaning my symptoms are often hidden from view. When it came to romantic misadventures, I did not deny the existence of my chronic health issues, but I rarely gave partners or dates the opportunity to get a glimpse of their effects.
If I was in pain, I hid it. If my body needed rest, I pushed through to save face. When my mental health declined, I painted on a smile and soldiered on. If I had hospital appointments, I refused to let them attend.
While I could intellectualize my conditions and explain them concisely, I kept a firm lock on the steel safe that shielded the emotional impact from view. I only allowed close family and friends to see inside.
Eventually, I entered into a long-term relationship that forced a change–for the better and the worse. While our relationship blossomed, we built enough trust that I felt safe enough to crack open the safe just a touch.
Even while embracing his care, I was hesitant to open up further. I’m not sure I ever would have if he had not insisted on it. After being told that our relationship would be doomed to fail if I did not let him see the full scope, I acquiesced and gave him access.
Having the additional emotional support helped ease the pressure and it became easier to acknowledge when my body needed rest and to pace my life accordingly. But, following this brief golden window of feeling a weight lifted off of my shoulders, the carer/patient dynamic came storming in and unraveled many aspects of the relationship.
The Poisoned Connection
Prior to taking the leap to live together, I only felt the briefest touches of the dynamic on the fringes of our relationship.
It appeared when he took the lead on dictating how I should handle a flare-up and solidified after he started hyper-focusing on me “getting better”. I would love to say that one day I’ll magically stop being sick but this cannot happen, which started to take a toll on him.
Although my ex-partner always needed to deal with my illnesses on his own terms, this felt more intense when living under the same roof. I am unresponsive during flare-ups and despise being asked questions in this state.
I repeatedly shared my “flare-up management” plans with my partner, which rarely required any assistance from him except for some emotional support and the provision of tea. Despite this, almost every flare I experienced was met with rapid-fire questions.
Over time, it felt as though they stopped listening to my needs and began “treating” me according to their beliefs and needs. On top of that, the guilt and shame I experience for regularly needing to cancel or reschedule plans dominated my thinking.
A Doomed Dynamic
I could not stand to let him down because the impact on him was starting to make regular appearances in our discussions about my health. I pushed far beyond my comfort zones to make up for it.
Eventually, I felt more like a chore than a partner. In the same way an overworked nurse delivers assistance, the care he offered felt perfunctory and routine. My health issues had become a nuisance for him and I started shoving segments back into the safe.
The dynamic we had formed, where he regularly acted as a carer and treated me like a patient, poisoned our emotional and physical connection. Intimacy and sex became a rarity and both of us retreated into separate shells.
The love I had for my partner made it difficult to recognize the impact of the carer/dynamic. I refused to acknowledge that the cracks in our relationship were turning into fissures. Then, one incident brutally ripped the wilful ignorance aside.
I was taken to the hospital by ambulance and endured one of the most agonizing days of my life due to a flare-up of a stomach condition. At the end of the day, my ex said that he had never felt closer to me. On the surface, it felt like a nice acknowledgment of the support we had given each other throughout the day. However, after sitting with his words for a while, they took on a new meaning.
It felt as though he liked me vulnerable, weak, and passive. Was I easier to deal with when in a worse state? Was I more likable when high levels of pain stole my ability to speak or make decisions? His words put a seed of doubt in my heart that swiftly grew and opened my eyes to the depths of the carer/patient dynamic that had infected our connection.
While he claimed the incident had reignited a strong protective spirit, his frustration with my being disabled was palpable. I think I became a nuisance to accommodate instead of a partner to compromise with.
Ultimately, my illnesses, and their potential to get worse, were listed as one of the primary reasons for his decision to end the relationship. It shattered me.
Turning It Around
Rebuilding after the delivery of this crushing blow was a daunting prospect. The carer/patient dynamic had decimated a relationship that, despite its countless other flaws, had been the longest of my life.
With no energy to spare for regrets, I decided to take this lesson and figure out how to prevent this dynamic from taking root ever again. I may be hesitant to open up the safe again but I know a functioning relationship needs an open line of communication to survive.
For anyone who is disabled and chronically ill, these experiences inevitably become an integral part of our lives. Hiding them, or their effects, to protect a relationship or ourselves from harm is doomed to fail.
Since the carer/patient dynamic torpedoed that relationship, I learned how to be vulnerable safely. While I share my experiences of chronic illness cautiously, I do share.
In relationships since, I do not shy away from the fact that a non-disabled partner will likely take on more responsibility for my care than I will for theirs. Now I remember that every relationship is like a see-saw, we take turns needing the other and caring for each other. And, this does not need to be perfectly balanced to succeed.
I feel no shame in setting boundaries that protect my body and mind from harm. If I do not want to share some aspects of my illnesses, I refuse to bow to pressure to do so. When I need to cancel plans or slow life’s pace, I do so without shame or guilt playing a role.
Above all, to protect my intimate connections from being drowned out by the carer/patient dynamic, I ensure that maintaining the romantic, intimate, and sexual parts of the relationship is a top priority.
After I recover from a flare-up or a big medical intervention, I carve out time to reconnect and remember that, even if I need them to care for me sometimes, romantic relationships are about love and connection first and foremost.