Maddy Reid is a 23-year-old Scot, currently living in London. She is a digital editor and also works as a model. She lives with multiple chronic illnesses. As told to Hannah Turner.
I was born with a noticeable physical disability. I wore leg braces and attended a school with a large disabled cohort. I spent time in hospitals and physiotherapist offices throughout my childhood, though diagnoses evaded me – nothing ever really got named.
As I reached adolescence I started to experience painful periods but so did the other women in my family so I didn’t think it was a big deal. Then I started to miss a lot of school due to sickness. My doctors started investigating gynaecological issues but still I had no answers. In 2017 my pain returned and so did my need to know what was really going on.
I went to six hospitals, saw nine specialists and was passed around every department until 2020 when, by chance, I was put in touch with a physiotherapist in pain management who suggested hEDS (hypermobile Ehlers-Danlos syndrome) and PoTS (postural tachycardia syndrome) to me, connecting all of my childhood illness and adolescent pain. It felt like a turning point.
I came out as bisexual pretty young and was crush-heavy, always infatuated with people. But because of my painful periods and acquisition of medical trauma during those investigations and procedures, sex always felt extremely daunting. By 16 I had already been told by a doctor that they didn’t know if I would be able to have sex or children of my own, and that all contributed to a skewing of my views around intimacy. Because of that, my initial explorations around sex were all non-penetrative. It took me a while to validate my own feelings about 'proper sex' when we talk about intimacy with another person. No one at school educated us on anything that might make sex difficult or painful, like dyspareunia or vaginismus, so I felt alone in my anxiety about it all.
Fast-forward to 2022 and I have entered my second dating hiatus of my 20s. More accurately, my body has forced me to, thanks to a slipped disc in my back. It’s a nasty injury for anyone but particularly with my conditions it can be a lot more complex, with healing time at least double what it takes a non-disabled person to recover from a similar issue.
I have always passed as non-disabled as an adult and people constantly disbelieve me so when I date there is this dismissal of 'not looking disabled', therefore thinking I must have a 'mild case'. Pretty privilege definitely plays into the dismissal, too. In the last year I have started modelling as part of my job and with that world there is this qualifying level of attractiveness that people presume and most people can’t comprehend disability with a modelling career – there is this inability to understand disability past the stereotypes they’ve come to know, so I just don't date people I meet through that.
Before 21 I hadn’t had one-night stands. I felt like with my history, my sex life was complicated and I needed time to explain that to new people. In more recent years I have been able to have penetrative sex and it was fun to explore dating in a new way. But what I didn’t anticipate was that a body like mine doesn’t operate like a switch. You don’t go from never being able to always being able to, and there is so much grey area within dynamic disability. Some days you can and some days you can't – the unpredictability of it all is so hard for other people to understand. After being with a new person I have these thoughts in my head: Would you want to do this if you met me on a different day, when I wasn’t able to do what you wanted?
I've personally never come across open ableism when dating, it's always more subtle. Instead, people always say they understand, they say they are cool with your boundaries but then they push them anyway. There is a sinking feeling when you say to someone, 'No, I physically can't do that,' and they ignore you, they don't get it, they can’t fathom a changeable level of pain that I and so many other people live with.
I am naturally a romantic person, always physically affectionate with people in my life. My friends would describe me that way too, so they were surprised when I voiced my need for a dating hiatus. In general, my dating life in the past few years hasn’t been exactly successful and lots of my friends are in conventional, long-term relationships so they see my hiatus as me giving up. Really, I feel at peace with it, having a mental rest from it all.
In the last year I have tried every level of disclosure. I took a different approach with every person I spoke to on dating apps. It was total trial and error. I have matched and told someone about my disability on day one; messaged people after we make a date plan; told some people moments before they need to know. I can't say I have found a perfect method. I've noticed when I speak about it in person, people (predominantly men) can't handle being honest to my face. No matter what they actually think, they will say they are fine with it until something comes up again later and they’ll retract that. I find those experiences more emotionally taxing because I have offered them an out and they never take it so I sleep with them and then they say they’re not okay with it, it's too much. It's like they think it's ableist to say no to my face, they don't want to be a bad guy, and that's actually more dishonest. I always explain: I can have a good time, I am up for whatever but before this moves further I need to say I can't do XYZ or some days I can, others I can’t. Other times I have texted it to them and a guy has been annoyed that I didn't save it for an in-person conversation, implying that it was too serious a topic to send via message.
I try and imagine my pain and disability on a sexual spectrum, using my baseline health as a guide, what I feel like on a good day or week. There’s 80% of heteronormative sex life that I can participate in, that is enjoyable for me, but some people seem so fixated on the 20% that I can’t enjoy or that they might miss out on. I have even been to therapy to try and learn how to talk to new partners about sex because I found it so anxiety-inducing. I hate how much mental energy it takes to accommodate another, non-disabled person’s reactions to my illness. How do you keep chronic illness casual? How do you keep being disabled light-hearted? Should you?
I don't want to hear about the things you wish you could be doing if I was a different person or had different organs.
I am lucky to live with some of my closest girlfriends so I feel supported and not necessarily seeking that kind of love with a romantic partner. My health overall is better than it was previously but the slipped disc is obviously difficult, and specifically the movements I can’t do coincide with the movements you may want to do when having sex, so it’s totally off the table. I can dance and go for drinks with friends but because casual dating feels so tied up with casual sex (at least in my experience), it’s an assumption I am constantly met with and, honestly, I don’t feel like constantly explaining.
One of the incidents I feel is most common is being with a guy and saying, 'You know we can’t do anything tonight,' and they respond with almost compliments, expressing how attractive I am. It feels like they are trying to push it so that I comply. All I hear when that happens is: You aren’t listening to my boundaries. It is never intended with malice but it reads as ignorance. I don't want to hear about the things you wish you could be doing if I was a different person or had different organs. My disability is so tied to my identity so maybe that is why I hear it like that. When it is dismissed it feels like an affront. It doesn’t feel like rocket science to be compassionate in new intimate relationships. I am spelling it out for them and yet they still can’t understand. That comes back to the lack of education around disability in society, and the structural ableism built into the way we live.
I want this romantic break to help me gain more confidence with my disability in a dating context. I feel good about it most of the time. I went through the playground bullying, grew a tough skin and learned how to make fun of myself. Sex is still the part of life I feel least confident with. I want to be more comfortable with my body’s limitations. I know what my body can and can't do but finding acceptance with that is harder. I know that lack of confidence comes from the normative idea of what the act of sex should be, attached to these outdated views that a lot of people, especially the men I have dated, still harbour.