I Thought Disability Made Me Harder to Love

Being loved by a disabled person is an honor, but disability can reshape romantic relationships in ways our culture rarely talks about. For this essay, I invited a handful of disabled writers and advocates whose work I deeply admire to share pieces of their own experiences alongside mine. I hope you’ll click through to their profiles and spend some time with their work.

As with my essay on disabled friendship, I wanted this piece to be larger than my own story. Disability is not a monolith, and neither is disabled love.

My perspective is that of someone who became disabled within an existing relationship. I also want to acknowledge those who were born disabled, those who entered relationships already disabled, those whose relationships have ended because of disability, those who have never had the opportunity to experience partnership because of ableist assumptions, and those who simply don’t desire romantic relationships at all. I hope these collected voices offer a broader glimpse into what disabled love can look like.

I don’t feel like an easy person to love.

I met my current partner Cam when I was still able to get by and mostly hide my disabilities. Cam was in a similar boat, becoming sick as a teenager, but then being able to oftentimes hide his chronic illness. We were both going through life pretending to be well.

“What’s really interesting about non-disabled love I find a lot of the time is that they’re stuck in the same performance trap I was when I was trying to hide my illness. Everyone is forced to perform a version of perfection that is impossible to attain so getting to know anyone becomes very difficult. Although not everyone is experiencing disability, everyone is held to an impossible standard and self-policing impossible standards onto others. The beauty I’ve found in accepting my own disability is that I can let myself off the hook. I’m not perfect. That’s okay.”
— Cam

I didn’t even consider myself disabled when we met. But five years ago, it snuck up on me, my body finally giving up the fight after pushing past my limits for too long. My comorbidities rearing their ugly heads one by one.

I started to become more reliant on my partner for every day tasks, making the meals, running the errands, taking the phone calls, caring for our dog. My autonomy slowly slipped through my fingers.

And with it, I carry a lot of grief but also shame and guilt.

“We already subconsciously feel like a burden. Well, I’ll speak for myself. I feel like a burden when I can’t get my mood to match the moment, or I can’t get out of bed, or I need extra help to function. Being intentional about not making me feel like a burden goes a long way when loving me.”
— Ashleigh Vaughn

It’s been an unbearable reckoning. Not only with the fragility of being a human on this planet, but also facing my own issues around self compassion and worthiness. In that regard, disabled love can be a path back to ourselves. A light in the darkness. A hand to hold that says, I see you and you’re loved exactly as you are.

When one person becomes the one scheduling appointments, carrying groceries, remembering medications, or taking on more of the invisible labor, it’s easy for those roles to become identities. One becomes “the caregiver.” The other becomes “the one needing care.” One of the hardest parts has been remembering that we’re still partners first. We’re still two people who make each other laugh, annoy each other, dream together, and care for each other in different ways.

Cam and I have swapped caregiving roles a few times over the years, and I think this has taught us more compassion. We’ve had moments of suddenly sharing symptoms, oh, so this is what you meant. I get it now and it sucks.

“I’ve radically reimagined my relationship to independence, for example, accepting a great deal of practical support from one of my partners has gradually become more comfortable over time. Yes, I feel guilt and shame at times for the unevenness of contribution in tangible terms, but I have also been slowly learning that the ways I give and love are just as valuable as the more visible, culturally valued ones. For example, my listening, deep reflections, humour, intellectual interests, personal growth inspiration and emotional support. This has deepened my ability to love myself as I am, too.” — Morgana Clementine

Accepting that what I bring to our relationship looks different than an able-bodied partner has been a journey. Even though we tend to hold physical acts to a higher value in relationships, emotional attunement, depth, creativity, tenderness, presence, resilience, and wisdom matter just as much.

I remember conversations where Cam was overwhelmed and I was the one who held space for him. Times when I organized systems for our lives because my autistic brain thrives there. Even when I write these essays that share new perspectives and emotional vulnerabilities. These all matter and bring something important to our relationship. Those contributions don’t disappear simply because they’re harder to measure.

“The sicker I got, and the more vocal about being disabled, I received hurtful comments from people I was dating. Things like, ‘I could never be with someone who was chronically ill long term.’ Or, ‘I don’t find it attractive to have to make accommodations.’ I wasn’t aware of how ableism could show up in this realm until I was actually shunned for my disabilities. Of course it has an impact on self-worth and desirability.
In my much more secure, loving, supportive long-term relationship, these themes still show up - but it is mostly in how I perceive myself, and how the ableism of society has infiltrated my thinking. I’ve had to become very conscious of how I speak to myself, weeding out the discriminatory narratives from my marrow.” — Devany Amber Wolfe

As an autistic woman, I’ve struggled my whole life with the question: Am I too much? Often being called overdramatic as a child and young adult when attempting to explain my tumultuous and frequently painful sensory world. Often an eye roll when I reacted too big to something that brought me joy or physically hurt me.

There’s a lot of internalized ableism I’m still working through. When I feel down, I worry that I’m too much work, that my partner could just find an able bodied person who is easier to love. The fear of being abandoned often bubbles to the surface.

Ableism doesn’t disappear once you enter a loving relationship. It sneaks into conversations about productivity, sex, independence, contribution, desirability.

“A lot of the time, people have all these assumptions about what a relationship ‘should’ look like that are very narrow because of ableism and individualism. Disabled people are also often infantilized, desexualized, and even fetishized. All three experiences can impact our experiences dating, our experiences with intimacy, and even our relationship with our own body, so I really wish non-disabled people would work on tackling the ableism they’ve learned that leads to these ways of viewing disabled people.” — Rebecca

Cam and I both have acted fine so the other doesn’t worry. I have hidden myself away in the past within this relationship and others. I’ve smiled through dinner even while feeling like I might pass out.

It’s terrifying to have to say, Hey, I’m vulnerable right now. I’m feeling weak. I need you. It’s showing your soft underbelly and praying that your sensitivity is not dismissed or taken advantage of.

“The slow quiet process of letting go of the idea of control is the biggest piece that is giving me peace. I often say it takes a lot of patience to be a patient but the same goes for love and romance. Most days it doesn’t look like big gestures or crazy adventures. Most days it’s just reassuring each other that we still love each other no matter how we can show up that day. That type of love that isn’t performative gives me the confidence to approach the rest of life with less fear and more of me.”
— Cam

There’s a need for more open communication, acceptance, and understanding than ever before. And the need to be heard but not fixed.

Our culture is obsessed with optimizing and perfecting, so when your body or your mind can’t comply there’s a natural suspicion there. There’s a fear that can manifest as endlessly searching for a solution. Accepting that you could become disabled at any moment is really tough to do.

From the outside world I’m getting this all the time. I’m seeing the stories of inspiring disabled people and the people who’ve cured their illness. I’m getting friends and family and doctors suggesting this supplement or that treatment. My relationship needs to be the safe space to share my fears and my suffering just as it is, knowing it might not change and having you say it’s ok if it doesn’t. If every conversation becomes another attempt to solve me, there is nowhere left for me to simply exist.

Part of accepting that I am worthy of love has also meant questioning why we place romantic relationships at the center of everything.

“I don’t need to be in a romantic relationship to be loved, and it’s not sad that I don’t want that. As a solo-polyamorous person, I don’t prioritize romantic relationships over other relationships and I think that trips them up.
Looking back to when I was 19-20, even though I had always moved in queerness I didn’t have language for the types of connections and relationship structures that best suited me. I’m grateful that even back then I was met with love and respect in my queer platonic relationships, because compulsory heteronormativity is compelling to many. Non-disabled people typically view children or romantic partners as automatic insurance policies. ‘You need someone to take care of you when you get older.’ I need people to take care of me now!
I will never trade the love that I receive from my friends and community for any romantic relationship — I have been loved more intimately by my friends and chosen family than from any romantic relationship that I’ve ever had, and I’m proud to say that because my friends are still here and they support my Black disabled autonomy.” — Ngozi

We’re constantly being told that romantic relationships are the pinnacle. That to be in one is the sign of health and happiness. The search for “your other half” tells us we cannot be whole without it. Then once you’ve got that relationship, it should maximize sex, productivity, travel, adventure, and ease.

Disability has also forced me to rethink why we place romantic relationships at the center of everything. Some disabled people will never have a romantic partner. Others don’t want one. Some lose partners after becoming disabled. Some build chosen families instead. If love is only recognized when it looks romantic, we overlook the countless ways disabled people care for one another through friendship, community, mutual aid, and interdependence. Romance is one beautiful expression of love. It isn’t the only one.

One of the hardest things for me to accept is my lessening ability to be intimate, not only sexually, but even just cuddling. I used to love spooning or laying my head on my partner’s chest. But oftentimes my body can’t physically handle these positions anymore.

“Not being able to perform certain acts of intimacy at times, but still feeling loved and connected, has deeply impacted my sense of self-worth. Even though it’s something I very much dislike about my endometriosis, it has also been very healing for my traumatized self. Feeling loved and cared for, even in my ‘worst’ state, has been truly transformational.”
— Neuroqueer Therapist

I worry that I’m not as desirable in this disabled body. Cam and I talk about it openly. We have to. Sometimes he tells me he misses that kind of intimacy, and as painful as it is to hear, I’m grateful he trusts me enough to say it. It’s another chance for both of us to grieve what we’ve lost without believing we have to fix it.

Romance looks different when you can’t go out as much too. There are far fewer date nights and vacations. You have to find ways to romance smaller and more steadily.

“I have learned a lot about different forms of intimacy and connection, for example, that which comes with simply “being alongside” someone, as you are, however unwell or low capacity you’re feeling, without needing to be a certain way or perform romance, or constantly give to another. There is a depth to this level of being seen that is very healing.” — Morgana Clementine

Intimacy can look so many more ways than I realized before becoming disabled. Disability just changes its language. There’s intimacy in bringing each other tea or snacks, in sitting nearby, holding hands for 30 seconds. There’s intimacy in holding space for one another’s emotions, in neurodivergent infodumping on a topic that you’re obsessed with, in rallying behind each other’s creative projects.

There’s intimacy in finding joy in small moments together. Cam will do a silly dance to make me laugh during a flare. He’ll cook us a meal that we eat together in bed. We’ll make inside jokes about the states of our broken bodies or watch TV and snuggle our dog.

Disability strips away performative romance until only real love remains.

“My disability has made me a choosy lover and a careful and selective friend. I know that not every person or connection is built for me or safe for me. I’ve taken time and done the work to learn to know and love myself. And because I am a highly sensitive lover girl with a big heart and huge capacity for love, I need to do my best to only align with love and intimate relationships that won’t cause me to regress.” — Ashleigh Vaughn

In disabled love, as in the rest of our lives, we’re constantly choosing uncertainty. We don’t know whether our bodies or minds will decline or improve. We don’t know what next year will ask of us.

Disability didn’t make me harder to love. If anything, it stripped away every illusion about what love was supposed to be.

It made it impossible to mistake convenience for love.

Anyone can love someone when everything is easy. Disability asks what remains when productivity disappears. When sex changes. When plans are cancelled. When one person needs more than they can give back in visible ways.

Real love is built in choosing each other again and again. In the tea brought without asking. In the forehead kiss before bed. In the hands that learn new ways to hold each other. In staying curious instead of trying to fix. In saying, I’m scared, and hearing, I’m still here.

I still have days when I don’t feel easy to love. But I no longer mistake that feeling for the truth.

Disability didn’t diminish our love.
It revealed what it had been made of all along.

I’d be honored to know what disabled love looks like to you.

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