Saints, sinners, seizures: dating with Functional Neurological Disorder
How to listen to Emily’s story: dating with Functional Neurological Disorder: watch the video above (if the CC icon is not on your screen, tap the screen to make it appear), read the transcript below, or download the transcript.Saints, sinners, seizures: dating with Functional Neurological Disorder
Emily’s story: dating with Functional Neurological Disorder
Sex Like This Podcast | S1 E4 Saints, Sinners, Seizures
[Edited podcast transcript]
Early on, when I first started having seizures, it was still quite unpredictable. And I was having a threesome and this girl – she was going down on me, and I start to have a seizure. When I have a seizure, I can’t speak or verbally communicate. And, she thought it was an orgasm. She thought she was doing amazingly, and so kept going. And, the other person who was in this threesome was trying to say, “Dude, Stop! Stop!” But, that’s one of those things where now I would have so much more confidence before sleeping with someone to be like, “Just so you know, this could happen. Please make sure you check-in. So if I stop making vocal noises, probably a seizure. Probably not just you having like mad skills.
There are over 7 billion people on the planet. And most of us are looking for love. So if we couple off, you know, unless you’ve come up with a more interesting arrangement, that means there are theoretically about three and a half billion people in the world that could be the one for you. And counting. So, with all of these options, why do we always hear the same love stories? The cookie-cutter, storybook version of what it’s like to fall in love is told over and over again. Well, friends that stops here, you’re listening to Sex Like This, a podcast brought to you by Uncomfortable Revolution about sex and dating with a chronic illness or disability. I’m your host Health Journalist, Nicole Edwards.
So I have a kind of interesting dating history. It’s sort of a tale of two parts. So, back at university, I was part of a very evangelical, charismatic church that was quite big on purity, which was interesting because before I went to university, I wasn’t a Christian and I’d been in relationships mainly with women and a few men. And then I went to church in university because I didn’t want to deal with coming out. So I did a whole lot of putting myself back in the closet – deciding that I wouldn’t have sex again before marriage.
So then I got to 20, and started dating a vicar’s son. We were both in church leadership. We were both working for the church. We were both looking at being ordained, working as vicars ourselves. I didn’t tell anybody that I dated women, that I was gay. I predominantly always defined as gay, and then occasionally have dated men to be like, “Oh God! Maybe I’m not!” We got engaged when I was 21. We got married when I was 22. And then, when I was 24 I reached a point of just being like, “I can’t actually do this anymore.” He was lovely, and there was nothing wrong in our marriage – apart from the fact that I’m really gay, and not very Christian.
After a few years, Emily decided to get her really-gay-not-really-Christian self out of her marriage to a vicar’s son. She left the church, she left her marriage, she left town. She moved to London, and then Emily…
Entered into the queer, kink, and polyamorous scene in London, which couldn’t really be much further from being a married vicar’s daugther-in-law.
Emily had just turned 25 and she was ready to live it up in a big way in London. She goes to raves, she starts powerlifting, and she gets into the best shape of her life. And, she feels free enough to date whoever she wants. Most of the time, it’s women. For a while it was a triad with a few gender identities thrown in there. The point is, she’s letting herself live free in the big city and she’s loving it. And then she meets a guy.
We kissed on our first date. And, completely without thinking, totally subconscious, [I thought]: ‘What if my feet just popped up at the back, like kicked up?’ Cause I was so swept away by the romance of this situation. And, we decided to be monogamous. We dated for about eight months, and we were talking about getting married and building a future together. And then I got really sick last year. I was taking the bus home and I started to feel the left side of my face drooping. So, I took a photo and sent it to my two best friends and my boyfriend at the time and I asked, “Guys, does my face look weird to you?
The answer was yes. So, Emily makes up her mind to get off the bus. And when she does, it’s really hard for her to walk. Her left side is not cooperating. It’s numb and it feels weak. So, Emily’s friend rushes to meet her. And the next thing she knows, Emily’s being rushed to hospital in the back of an ambulance.
And they rushed me in and rush me down for a CAT scan. Because they assumed it was probably a stroke. And I was eventually admitted for three weeks. I stayed in the hospital, had loads of tests done. They were trying to work out what it was. My boyfriend came to visit me twice during that time – even though he was in the city. And, on the day I was discharged he was supposed to come visit, but didn’t come visit. Two weeks later, we finally spent some time together and we went to an art exhibition, which I really struggled to make it round. I wasn’t using a wheelchair at that point and to be honest, I probably should have but I was too proud. And, and he started to get uncomfortable about how hard it was for him to have to deal with my situation. And then later that day, he broke up with me, because I was too disabled for him.
This was obviously a big turning point in Emily’s life. To go from a sexually-liberated, social butterfly to being dumped for circumstances she really couldn’t control. While at the same time, tried to wrap her mind around the fact that her body was not in the powerlifting fighting shape it once was. That’s a lot to deal with at once. Then she got definitive news about what was going on with her body.
It says Functional Neurological Disorder, which is actually one of the most common neurological disorders that there is. But also one of the most under-researched. For me that impacts me like a cross between MS and Epilepsy. So, seizures, weakness, tremors, spasms, and fatigue. And that’s caused by the software of my brain, not the hardware. Whereas MS and Epilepsy are caused by the hardware of the brain going wrong, and FND is caused by the software of the brain sending signals through the nervous system in a jumbled up way. So, there’s FND, which has been ‘inflared’ recently.
Then, I have hyper mobile Ehlers Danlos, which is a genetic connective tissue disorder. Caused by my body making too much collagen. And for me that mainly manifests as a lot of pain. ‘Subluxes’, which are like small dislocations where your joints will come a little bit out of place. That’s normally in my wrists, my shoulders, my collarbones, my ankles, hips. I bruise super easily as well. So, it’s a big one with that. It sort of affects my digestive system and [sighs] there’s all sorts.
Then I have POTS, which is Postural Orthostatic Tachycardia Syndrome, which is a heart condition. That means my body struggles to regulate how it pumps the blood around. So, I’ll quite often have a really elevated heart rate, and that can make me – again – really fatigued. But it can also make me really dizzy and like ‘insane’. And that can also trigger seizures. So, I have two seizure causes.
And I have ‘Aspergers Syndrome’, which I hardly ever think about because it’s just such an integral part of me and, and it’s also my job, it’s also an autism. So, I don’t think about that loads. The main thing that impacts is my social energy can get drained quite easily because it doesn’t necessarily come as naturally to me as it appears. Which is really frustrating because I’m also an extrovert. And then, I’m in the midst of being assessed for ADHD, which is almost certainly going to come through. I also have Cyclothymia, which is like a really mild form of Bipolar Disorder. So, it can make me anxious and quite low. Or I can have times when I’m quite creative, and motivated, and happy.
Another big change was Emily’s new need to use a wheelchair most of the time. And when that started to fatigue her too much, she switched to a power chair so she could save some energy when she was going about her day-to-day routine. And for the past four months, because of a bad flare up, she’s been spending a lot more time in the house than usual. The way Emily used to socialize is so very possible, but she’s getting used to some of the ways that it is going to have to change – dating and intimacy included.
The subluxes and dislocations have definitely changed that connection to physical intimacy. And, it does have an impact on how and when, and in what positions you can be physically intimate. Even something really simple like curling up on the sofa or sharing a bed with someone. And so, at the moment I sleep alone. But most mornings I wake up and my shoulder’s out of joint. Or I’ll lay on the sofa and my hip will come out of joint.
And thinking about that in sex terms, like oral sex is a really classic one that requires a lot of jaw stamina. Like, it doesn’t matter what genitalia you’re dealing with, you’ve got to have jaw stamina. My jaw dislocates really easily. My wrist comes out of socket really easily and I’m in a lot of pain. So, that sort of manual stimulation then gets impacted by that. Even certain positions can mean my neck pops out of joint and, and so I’ve been thinking about this a lot. At the moment, obviously, super single.
There is literally no one to even consider having this conversation with. But I think there is so much potential for still having a little fun if you’re with somebody who is willing to adapt their idea of what sex and sexual activity looks like. And moving away from goal-oriented sex – where the idea is that two people are going towards a final goal and the ideal is that they both get there at the same time, or really close together – towards something that’s much more exploratory and much more focused on a joint experience of intimacy than necessarily this ladder or escalator of what pleasure and physical intimacy looks like.
And so, I think some things for me that – when I do start being sexually active again, which I really hope isn’t too far away (loving the single life, but also would really like to have sex soon – that’d be great) – is that ability to speak up. And to say, “This isn’t working for me,” which I think is something that a lot of people – disabled or not disabled – can really relate to. It’s that confidence during sex to ask for what we need, and what we want, and what feels good. Instead of getting really caught up in needing to be the ideal sexual partner who doesn’t have any, ‘weird’ needs. And so yeah, I’m thinking a lot about actually just having better communication in sex.
And thinking about all the crap sex I’ve had in my life, and how all of it was always down to communication. So, this – hopefully – is going to spur me on to just having better sex in general, because I’m gonna have to communicate more. Hopefully, eventually, there will be an amazing woman because I’m finally not giving in to compulsory heterosexuality. I know that I’m gay. And you know, I’m gay and Disabled and like, sure that means that maybe I could view it as having the odds stacked against of ever finding someone who would want to be in a relationship with me. But I know that there’s so many other gay, Disabled women out there in incredibly loving relationships. So, there’s literally no reason why I can’t be as well.
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UR is on a mission to change the way we talk about sensitive health topics, one awkward blogpost at a time. Posts by this author are from the Editors at UR.