My Partner Is My Caregiver So Am I ill?
I’m Chronically Ill, & My Partner Is My Caregiver
My boyfriend washes my hair, cooks my dinner, cleans our home, and collects the mail. He’s not some kind of superhero; he is just doing the things I can’t, to keep us both happy and healthy. It wasn’t always this way. We met hiking a mountain. We fell in love over bottles of red wine and late-night cinema visits. Almost everything has changed in the way we live now but we remain as happy as we were before I got sick.
It is often touted as an act of modern feminism to get your partner to do the laundry or contribute equally to the household chores. However, in my and many other disabled people’s cases, it is merely a requirement for survival. Of course, it impacts our relationship — the way any life adjustment does — but it does not make me needy or high maintenance. Nor does it make him special. There is no savior complex here, just two people who fell in love and are managing through sickness as they did in health.
There is much to be said about the assumptions people make when they see a disabled and a non-disabled person in a relationship. We have had our fair share of everyday ableism and I am someone who uses a wheelchair only part of the time, so my various disabilities are only partially visible to outsiders. People stop by our car, gesturing to help carry me into my chair; mothers with stroller and patronizing smiles look over at me, and him, and me again. Someone asks what happened or when I will get better (as if that is something I can control). When strangers pass us in the street there is a knowing look we have both come to recognize, eyes that say: Good on you mate, looking after that disabled girl. Most of the people we both value in our lives accept my illnesses and consequential limitations to social activities or events, but that doesn’t make declining invitations almost every weekend any easier.
I’m not alone. Ciska is 24 and has been with her boyfriend for over six years. She lives with endometriosis and POTS (postural tachycardia syndrome), alongside other undiagnosed chronic pain. Ciska says there are people in her life who often talk about “how amazing [my boyfriend] is, that he has stuck by me all these years”. It is this judgment, from those looking in from the outside, that many disabled people in inter-disabled relationships find frustrating. Ciska has to remind herself of “how much emotional labor I do in our relationship” and says that therapy has helped her feel more confident in those feelings.
An unequal distribution of physical and mental loads is often referenced in unsuccessful relationships, and I have to remind myself constantly that the desire for a 50-50 split across all facets of a couple’s shared life is a standard set and upheld by non-disabled people. Ciska also says she has dealt with a lot of guilt when it comes to the balance of physical tasks around the home she shares with her partner. “I feel so guilty for not being able to pull my weight in the house,” she says. “Knowing when to say I can’t do something and when I should push through.”
Cooking dinner involves much more physical exertion than an average person might imagine. It uses at least a third of my energy quota for the day and that is after working, studying, and keeping myself clean. For my partner, cooking is relaxing. He watches football in the background and as long as he has the recipe to follow, I won’t hear from him for an hour. I am in charge of all the parts you need to cook, before the cooking starts. I find the recipes online, organize a meal plan, write the shopping list and then order the groceries. Those tasks are just as valuable as the actual cooking of the meal but to outsiders, it may seem like my boyfriend cooks and cleans for me — aren’t I lucky?
Alex, 28, lives with physical and mental chronic illnesses. They say that their current long-distance relationship is complicated by the ongoing symptoms they experience. There are no tricks to navigating love when you’re sick, says Alex. “I think it’s universal in every relationship that you need mutual respect for each other’s feelings and experience, and willingness to learn new things and adapt to new hardships.” This is a myth that all us disabled folks would like to bust: although our struggles are personal to our illnesses, every couple faces complications and periods that test them and so it is not a reason to pity disabled people or congratulate their non-disabled partners. Ours is merely an experience of love that many will not face or understand and so assumptions are often made.
The biggest adjustment to my love life after disability is the loss of spontaneity. I was always the first to order another round at the pub, stay late at the party, or book a surprise weekend away. With illness comes mundanity. Routines and rules are what keep my health at a stable baseline — sticking to the same three restaurants that won’t play music too loud or have stairs to reach the bathroom. The same bedtimes and breakfasts, four walls never really changing.
Twenty-nine-year-old Athene lives with her long-term partner, who she relies on for physical care such as washing herself. She says that their dynamic has changed, clearly marked as “before” and “after” she got sick, and speaks to a fear that I and many other young disabled women live with. “We want to do life together whatever that entails,” she says. “He was very clear that he wasn’t going anywhere when things went south because I did have some anxieties about whether he might leave.” The idea that we become less when we become more unwell or require more care is ingrained in many of us as a result of growing up in an ableist society. The belief that our value lies in our physical output, whether that is paid work or domestic chores, is hard to unlearn.
When asked what makes her relationship work, even in difficult times, Athene says: “Since we’ve gotten into a routine of planning around my illness we’ve also tried to prioritize joy – investing in things we like (food, good films, music) and can do from home, and trying to get into nature whenever I’m well enough to.”
Many people equate spontaneous decisions with romance, constantly searching to keep the spark alive through shared new experiences. I did, too, before I got sick. Now, my partner and I have had to make do for weeks at a time where I could only move from bed to sofa and back again. We’ve played Scrabble in the dark when my neurological symptoms could not tolerate light and traveled to hotels only to be stuck in the room, eating delivery food. Not to mention the many date night plans that are swapped for long queues in A&E when the pain becomes too unbearable to stand.
None of this is to say we don’t have fun or have opportunities to feel like other couples our age, but the grass certainly isn’t always greener. I hate to spout toxic positivity, to suggest that becoming chronically ill has made me a better girlfriend or a kinder person. Most weeks I grieve the functioning body I once had, and fear the future that almost always seems to be getting worse. I do know that being sick has brought us closer; we’ve reached a new kind of intimacy that I have never felt with a partner. Receiving care from someone who loves you is affecting in ways I struggle to describe. The guards I once held up to people I dated started to sink when I met my current partner and have now almost entirely disappeared. When someone sees you at your weakest, figuratively and literally, and holds you to remind you that you’ll get through it together, you know you’ve found a good one.