The trials and tribulations of dating with a disability.
I am lucky enough to be on the Australian National Disability Insurance Scheme, or “NDIS”, which is a government-funded support that allows me to gain smoother access to services like support workers. The concept of dating while having regular support work sessions a week has consumed my thoughts over the last two or so months after I had one particular dating experience.
Towards the end of 2021, I went on what I thought was an incredible date with a man who felt supportive and adventurous and had the same passion for social theory that I do. We’d talked for hours, flirted, and discussed our families and lives and what’s shaped us to become who we are today. I’d also vaguely mentioned that I have anxiety and arthritis.
I describe myself as a “professional patient”. Because I have several chronic illnesses and have had impairments since birth (See Post), I’ve always had to travel differently through the world than how a healthy, able-bodied person would. I’ve had two CT scans, an MRI, an EEG, a PET scan and countless ultrasounds, not to mention the four operations I’ve had all for different issues. So yes, my day-to-day life consists of regular maintenance appointments — which I’m learning seems to be far from the average experience.
In the last 5 minutes of the date, I was utterly frustrated and shattered.
He’d ended the date with a phrase along the lines of “I’ve had a great time with you and really enjoy your company. I’d really like to spend more time with you and catch up soon for more political and intellectual chats! Though as friends… at least until you’re more stable, maybe.” At that moment, I both felt hopeful but also so broken and disheartened. Hopeful by the reminder that there are emotionally mature, grounded and politically aware men in the dating world. But broken because, by “more stable” I can only assume he’d meant until I no longer have anxiety, anxiety which I’ve had for over half my life.
He had no knowledge of the type of anxiety I have or its severity, OR how it affects my day-to-day life — or how it doesn’t affect my day-to-day life.
I could see I’d said something wrong. I could see I’d emotionally triggered some sort of quasi-PTSD of his…
In relation to my disabilities, I present as a fully-able bodied person, as non-disabled. Unfortunately, how I present brings about the difficulty of continuously needing to choose when to tell someone I have health issues and how much to tell them. If I tell them now, will I ruin our chances? Will they decide I’m not worth the problems? But if I don’t tell them now, it might hurt them down the track… I don’t want them to feel as if I was hiding something or being dishonest. I don’t want them to feel “lead on” — I know how that feels. Transparency is crucial in relationships.
I’d felt safe and heard by him, so I felt comfortable sharing the information I did, despite it being our first (and only) date. As sad as I am that I essentially ruined our chances, I feel glad that I shared what I did with him. I do wonder though… perhaps if he’d gotten to know me more and had the opportunity to learn how I do move through life, he could have seen that my disabilities aren’t as daunting to be around in real life as they are on paper. But, I feel I was honest with myself and followed my values in the moment.
The right thing to do isn’t always the easy thing to do.
It is a persistent battle of potentially scaring someone away with a vague description of my health, leaving a lot up to their imagination… Or holding off on telling them so they can gain a more realistic view of how my health actually affects my everyday life. I had a breathtaking date with him! But, I am torn about the situation. He was respectful in setting the boundary, and he gave me “props to you for getting the support you need,” though that did little for the sting.
With my family history and current health, I will unlikely ever be free from mental illness or be fully able-bodied/non-disabled. Ever. Where does that leave me? Where does that leave all people with some form of mental illness or physical impairments/disabilities?
I must point out, I personally feel there is a difference in having one person with a disability or impairment in a relationship compared to both(/all) partners having disabilities. Not that the “healthy” partner should take on more responsibility, but more so that the pressure and time in managing two or more people with disabilities within a relationship can be far more difficult. I have experienced dating when both my partner and I were unwell, and it was difficult on a whole other level.
To his credit, he had shared with me that 2 of his exes had suffered from severe mental illnesses in which he became the primary carer. Post-date, I asked for further clarification about his “as friends” statement. He stated: “it’s about me and my history, nothing about you being flawed in any way”. It meant a lot to me that he could see his part in the situation, though I also felt a deep sadness that he’d had such experiences before and didn’t have the knowledge at the time to know what he’d signed up for. I could see that this time he was purely trying to protect himself, but it did hurt that I had to be lumped together with his past relationships from when he was less self-aware. We do all grow and develop and learn and gain scars along the way.
A brief summary of my health: rheumatoid (auto-immune) arthritis, fibromyalgia, CFS/ME (“Chronic Fatigue” constant lack of energy that sleep doesn’t fix), strabismus in both my eyes, speech impairment, ever-changing anxiety and depression and an eating disorder. That’s most of them, anyway.
Several curiosities, observations, and questions arose for me in the weeks after the date. For instance, I became interested in the reasonableness of my desires and expectations of potential partners (e.g. ideally, at least one of us would be comfortable driving a car — for adventure’s sake!). His statements were a necessary yet unwelcome reminder of my chronic “brokenness” and my “not enough-ness” in meeting others’ desires and expectations of their potential partners.
If there’s something people should know about me, it’s that my physical body limits me far more than my mental health does. Very rarely does my anxiety stop me from doing what I want to do — it just slows me down sometimes while I figure out a plan to do things in a way I feel comfortable doing them (usually to accommodate my physical health). I’m fairly well-practised at reading where my physical body is at and what it’s capable of at any given time, but it causes me anxiety because if I go even a small amount over my body’s limits, it can have very painful consequences; that can last days or longer… So it’s a balancing act between keeping my body moving and active to not cause a flair-up with my arthritis or CFS/ME.
I’ll never, never be able to run 5kms or do a HIIT workout with a partner. I’ll never be able to rock climb 3 times a week or run a marathon. Never. What if my partner is a fit man who jogs every day, and I’ll never be able to join them fully in their exercise (/movement) routines?! In my experience, many people want a partner they can exercise with, myself included… though for me, that needs to be done in alternative ways. It would mean finding ways to tweak life. When speaking to my psychologist about my concern about not meeting others’ physicality, we walked through a hypothetical: if my partner and I went to Kangaroo Point once a week and they enjoyed high intensive exercise. They could jog or run or do whatever activity they wanted to do while I go for a walk or sit (depending on my pain and energy level) and take in the fresh air. So we could still share the experience, but in a way that suits us.
Although I’m not a perfectionist, I am always striving to improve myself and have (mostly) learned to accept that I may never be entirely well, though I always work to maintain my best possible physical and mental health. Like, I don’t want to use the word “resigned” in relation to how I treat my health, but I may never fit society’s criteria for being normal.
I wouldn’t expect or want my partner to be the only one making sacrifices. I am passionate, and affectionate, and I like to think I am a fairly giving person. I’ll do just about anything for those I care about (partially thanks to the determination I had to have to get through so many appointments lol).
My thoughts… the fine line between partnership and carer roles. I DO have support workers to assist me day-to-day, and that wouldn’t decrease if I were to get a partner. It’s not a conditional contract in this sense. But I recognise it would affect a partner if I have support workers. I know that having several regular appointments and having these “extra people” in our lives would affect our relationship. I’m lucky my family enjoys having my workers around.-
I hope to write a piece comparing the difference in care from a support worker vs a partner and what professional support workers do and don’t cover.
It really got me thinking about where the line is. Obviously, people do more for their partners than they would a stranger, like how people do more for friends, but that’s all a part of what friendship and relationships are — caring for someone besides yourself and creating experiences together. I would never expect or ask a partner to take me to appointments or reduce their work to care for me.
I enjoy being independent and having my own space. The principal disadvantages of my disabilities day-to-day are my lack of time because of appointments and my lack of energy due to CFS/ME. To manage this, I pretty much always plan ahead and try to tweak day-to-day activities to help with energy conservation. I am aware that my choices affect others, but I always try to include those involved where possible so it suits both of us.
I’m lucky my family has embraced having my workers around. I am in the process of writing a post comparing the difference in care from a support worker vs a partner and what professional support workers do and don’t. Though I also know it is important not to become co-dependent (as opposed to interdependent)… I don’t want our lives to become blurred together into one mess. We are two (or more) unique people. For me, partnership is more about sharing love, experiences, and life with someone, knowing someone’s on my side and that I’m on theirs. It doesn’t mean we have to spend 24/7 together — unless we wanted that. Though it would mean making adjustments to our life.
There is evidently a care element in a partnership as in other relationships, though for me, the most crucial part is compassion, compassion in not pushing me past my physical or mental limits, and trusting my judgment of my health needs. Compassion around willingness to be flexible in how we live our lives to not exacerbate my health. That is not to say that my health is the only one that matters in the partnership, absolutely not! Though I also cannot afford to risk my health facing more irreparable damage.
How in the world is someone meant to start a relationship on that footing? Knowing that they’d have to be extremely flexible and have enough compassion, self-confidence, self-assuredness, and conviction to be open to such flexibility in their life. It’s not as if I was in a partnership and then had an accident. Nope! They’d be signing up from the beginning. It is hard to ask that of others, but it’s also hard to even hope that there might be people open to that… Unless they fall head over heels for me, how could I expect someone to want to sacrifice and alter so much of their life for my challenges?
But… I don’t want a cookie-cutter relationship. I want one with playfulness, flexibility, and honesty. A relationship where we can both be ourselves and grow together and do things the way they suit us, not the way society says.
I feel like my health has let me down once again from something potentially amazing.
To answer: what is life like when “dating with a disability”?
In short, frustrating. It involves a lot of self-compassion and love, a high level of self-assuredness, and knowing one’s limitations, along with having the patience to sift through hundreds of people to find one (or many!) which has the capacity and level of compassion that matches your needs. I’ve found feminism to be a major guide on my exploration of self-compassion and acceptance through my disability and dating experiences.
Song recommendation for this post: Liability by Lorde
https://genius.com/Lorde-liability-lyrics
What I’m working on:
I’m working on: part 2 of Dating with a Disability, where I’ll discuss my difficult decision to end a relationship with a man who has health issues himself. It was a complex experience. I was conflicted.In the future: I hope to create a piece on the difference between mental health and mental illness, and a piece on life with support workers.
Further reading:
‘Am I disabled today?’ How Erika finds strength and compassion by embracing her disabilities by Erika England
