drawing of five different people against a rainbow background

Returning to the Dating/Fetish Scene After Becoming Chronically Ill by Mi Nguyen

Image by Verywell/Zoe Hansen

(Disabled folks can be kinky too.)  

* I will preface this by saying that I do not like to kink-shame because many develop fetishes as a coping method for trauma, which is completely valid as long as it’s safe, legal, and between consenting adults. Also— your fetishes aren’t anyone else’s business anyway. Unless, of course, you’re into exhibitionism. 

I fell into the online kink scene by chance when I was younger, and mostly just spent hours of reading on Tumblr. It was around the time 50 Shades of Grey became popular and many seasoned kink veterans were eager to educate, pointing out and correcting the inaccuracies in  the books regarding BDSM dynamics. Information was abundant, and it was all incredibly fascinating to me.  

Self-discovery became a highly prioritized personal project for me as well. Since then, I’ve spent years researching every aspect of kink under the sun. However, knowledge and application are very different things. Figuring out how to live out your fantasies, or even finding a complementary partner to practice with can be a frustratingly difficult endeavor.  

Throw in physical limitations, disability, chronic illness… Expressing those sexual aspects of yourself can then seem impossible. 

For those who lean towards the lifestyle end of the spectrum, or strongly identify with their chosen kink roles (as opposed to those who only like to dabble casually)— this can be a devastating loss. With chronic illness, cycling through the stages of grief is a continuous and  unending thing anyway, but I digress.  

Many kinksters will tell you that their sexual identities play an integral role in their personality, or how they express themselves wholly and daily, regardless of whether or not their private interests and practices are known. Once adopted, it can burrow into your lens and influence how you carry yourself. There is always a mental switch that flips when a person leans into their chosen role(s). Shifting into that specific headspace is not necessarily an  intentional thing, nor is it always sexual. (The film Secretary (2002) displays this brilliantly.)  

What happens when you need to tuck away aspects of you that can no longer be practiced? They can remain in fantasy, but there is a chance that it can bring about more frustration and grief when involuntarily kept for too long.  

The things I’ve wished to experience in that realm have been included on my bucket list,  but here’s the thing about bucket lists: By the time you feel the need to make one, you’re probably already too ill to complete some of the things on that list.  

I thought of potential workarounds, and was led to one of the largest fetish forums on the internet to search for clues. I thought that there was bound to be a community of disabled people who have overcome their limitations and discovered ways to make things achievable.  

In my search, I discovered another corner of the kink community: disabled people and their “devotees.” Devotees are those who fetishize disabilities, sometimes specific conditions and/or  diseases, including spinal cord injuries and varying degrees of paralysis, which can be  considered forms of eroticized vulnerability/helplessness. Like nearly all kinks, there is room for  it to be very problematic. Ableism is rampant, and the kink community, as much as it preaches open mindedness and acceptance, is no exception. 

This leaves the disabled community in a bit of a bind (excuse the pun!), when searching for an  understanding and welcoming kink partner without fear of being exploited.  

Owning your sexual identity as a disabled person can be as limiting as it is liberating. Chronic illness isn’t exactly sexy, and it can be difficult to explain when meeting new people if you’ve got an illness that’s not widely known like I do. The fear of rejection is internalized and amplified. 

Even dating in general, can feel a bit bleak when constantly facing both your incapabilities and mortality. There is so much uncertainty and lack of reliability on my part that I would feel guilty about passing onto another person. 

Of course chronically ill and disabled people deserve love, but we don’t always feel that way. We are burdened ourselves by our illnesses, and sometimes we can’t help but to assume that we burden others as well. 

It should be noted that sometimes, our partners will choose to leave if they are unable to cope with the major lifestyle changes that illnesses can bring. That can be traumatic.  

To actively meet people, while carrying the fear that you’ll scare them off eventually, or the fear that you’ll be starting something that you won’t be able to sustain, can feel  almost like self-sabotage.  

I teeter between wanting to socialize the way I used to be able to, and avoidance because I remember that I’m no longer that person anymore.  

It’s entirely possible to find someone who is more than willing to shoulder both the good and bad that comes with your situation. However, it doesn’t mean that you won’t be hurt in the search, inevitably developing fondness or attachments to people who are unable to reciprocate. That’s  when I fall back into the hole of wishing I were “normal,” or thinking “this nice person doesn’t  deserve the instability and hardship that I would bring into their life.” If given the choice, why  would they choose difficulty? 

I feel like a ticking time bomb.  

I suppose this would make engaging with “devotees” seem all the more appealing. After all, they know exactly what they’re getting into and welcome it with much enthusiasm, despite possibly having questionable intentions, or unrealistic/dehumanizing views of disabled people. Illness is incredibly isolating, and it can build desperation for connections. We’ve all felt this to an  extent during the pandemic, but pandemics can end. Disabilities, a lot of the time, do not.  

There was frenetic, jumbled discourse between “good devotees,” “bad devotees,” disabled folks who hate it, and disabled folks who don’t mind it. Above all, there’s an air of hopelessness in the  convolution. I didn’t find any answers to what I’d been searching for, so I guess I decided to just wing it.  

In a bittersweet way, I did encounter people who are in their early stages of post-viral inflammatory syndrome (Long COVID) and can relate considerably to my illnesses. After all, COVID-19 is considered a mass disabling event. This fact is very little-known to many, but for the communities of incurable chronic illnesses like ME/CFS (Myalgic Encephalomyelits/Chronic Fatigue Syndrome), Chronic Lyme, etc, Long COVID has been a major accelerator for our research. It’s suspected to be a form of, or is incredibly similar to ME/CFS given its indefinite flu-like symptoms, fatigue, and neurological issues. The number of people suffering from this has  exploded in the past few years, and will predictably inch higher as the pandemic rages on.  

We (in the ME/CFS world) have been waiting for our research and effective treatments for a while, but in the meantime, it can feel a little relieving (albeit sad) knowing that there is now a higher chance of finding someone who is understanding due to their experiences with COVID/ Long COVID.  

But I’ve also met people that I like who are not chronically ill, and that scares me.  

Like, a lot. So, I’m still doing that finicky pursuit-and-avoidance waltz that I mentioned earlier. Is it  enough to just tread the line until I can figure it out? I’m not sure yet. They have been incredibly  understanding and accommodating, much to my surprise.  

The pessimism and weight of dealing with poor health, coupled with some traumatic experiences can make us underestimate the number of genuinely good folks out there. They exist! 

And at the very least, I’ve made some first steps and taken a few risks—and I do give myself a  pat on the back for that.  

Navigation in these new, sick shoes is perpetual and evolutive. 

Disabled people are too often seen as asexual beings, and conversely are also objectified by those who fetishize us. In my case, I present as an able-bodied person which confuses people when I tell them I am not. This can be seen as a turn-off for both “devotees” and non-disabled  folks. An invisible chronic illness is either considered “not visibly disabled enough” for the  devotees or “false advertising” to others.  

It’s both a stigma to fight against, and a challenge all on its own, but yes—disabled people  can be kinky too.

Mi Nguyen (she/they) is a Vietnamese-Cambodian, kink-positive disability writer and digital artist. Mi was born and raised in Little Caribbean, Brooklyn, and dabbles in the local NYC hip hop scene, producing events and doing PR work. Mi was diagnosed with myalgic encephalomyelitis, POTS, fibromyalgia, and a few other conditions in their early 20s. Now their work focuses on raising awareness about under researched chronic illnesses and disability rights. 

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