Roxy Murray

On the final episode of this series, Jennie and Zoe chat to ETUK's brand new Quest range ambassador, disability activist, Roxy Murray. 

They chat about her Multiple Sclerosis diagnosis, dating, her podcast and her campaign work.

@multiplesclerosisfashionista
@thesickandsickeningpodcast

Full transcript available. 

Transcript

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JENNIE: Hello and welcome to The Undressing Disability Podcast, where we talk all things sex and disability with me, one of your hosts, Jennie Williams, and my lovely co host, Zoe Lloyd. We have so many exciting guests on this series, and we really hope you enjoy it just as much as we do.

On the final episode of this series, Zoe and I chat to our brand new Quest range Ambassador, disability activist Roxy Murray. We chat about her multiple sclerosis diagnosis, dating, her podcast and campaign work.

Hello, Roxy. Thank you so much for joining us. It's really lovely to see you with your beautiful pink hair.

ROXY: Thank you. It's really nice to be here. So thank you for having me on. 

JENNIE: Well, you know, you know, when people get intro'ed on podcasts, the host reads out this really long bio of somebody, and I know what it's been done for me before, and I'm just thinking, wait a minute, I was about to say all that. So rather than me doing this really long bio and intro about you and for you, are you happy just kind of letting everybody know who you are and what you're about? 

ROXY: Of course. So, for those of you that don't know me, I'm Roxy Murray.

I also go by the multiple sclerosis fashionista on Instagram, my social platforms. I'm a disability vice advocate and a sex positive influencer. I am, what my friends call me, a pansexual princess. I do a lot of stuff, and I have a podcast. So my podcast is called Sick and Sickening Podcast.

And I speak about a lot of subjects with different people with different disabilities and illnesses. And one of my favourite subjects is sex and disability. I'm also a production manager, and I also do content creation, and I use fashion as a tool for activism. 

JENNIE: Well, do you know what? I'm really glad you did your own bio, because I would have struggled to make sure that I get all that in, to be honest with you.

But you have MS, is that right? 

ROXY: I do, yes. 

JENNIE: Okay. And so I quite like, when we chat to people, kind of go back before we start going forward, because, actually, that's a big part of someone's journey, isn't it? Certainly for a few of us when we first got diagnosed with our conditions and those early days, because people can see quite a lot of us now being really out there, really confident.

And I don't know about you, but certainly for me, and I know Zoe's the same, that wasn't necessarily the case from the get go. So you just kind of OK taking us back, know kind of who you were pre MS. I'm no doubt you've been on a bit of a journey. And how that even came about, you finding out you had MS. 

ROXY: Absolutely. So, for me, the first time I presented with any symptoms from MS. I was 18, so before that I was just living regular London person life. Going to Camden, going to Rock Club, started a college, was studying art and fashion, and was going to University to study fashion styling and promotion stuff. And then one day I was at home, I was lying in my bed, I woke up and I had double vision in one eye and blindness in the other.

And I thought, you've had a hard night out, because obviously I went out the night before. What's happened? Have you drank too much, someone drugged my drink, that kind of thing? I couldn't see, obviously panicked. Woke up with no one else in my house, so I didn't know what to do in that moment and was like, okay.

Thankfully, my Mum came home and I was like, Mum, I can't see. And she was like, don't be stupid. Literally, physically, cannot see through one eye unless I close. It's just blurry. And she was like, right, you need to go to call the doctors and then go to hospital.

But they sent me to a eye hospital predominantly first and not the actual general hospital. When I went there, I was in the room by myself because they told Mum to wait outside and that. And they were like, oh, done some tests, looked at the back of my eyes and was like, I see you have a brain tumour. I was like, what? Now? Imagine I'm 18, sitting in a chair by myself, thinking, last night I was dancing with my friends and living my best life, and they were telling me that I have a brain tumour. They were like, we need to do more tests and we're going to send you to the generalised hospital so you can go and see neurologists and they can do this.

So that was like a whole kerfuffle. I was in the hospital for a few days. They'd done, like, lumber punches and they gave me steroids, which thankfully brought my sight back, but ultimately, at that point, I still didn't know what I had. And then I got my first wave of diagnosis, which wasn't MS.

At this point, they said to me that I had Lupus, benign cranial hypertension, which is when you've got too much spinal fluid in your spine and it raises too high into your brain and puts pressure behind your optic nerves, which obviously they were saying were causing double vision and blindness, and then antiphospholipus syndrome, saying that I was prone to blood clotting.

That's why I got told at 18, I was like, okay, great. Didn't know what any of that really was, by the way. They were just words being thrown into my Universe and I was like, right, and had to go home. Didn't really go well. A lot of emotion, a lot of stress, like, a lot of anger, of like, Hello, I meant to be going to party with my friends and travelling the world.

Why 18 did I get this diagnosis? And that's how my journey of health and disability started.

But as you can probably tell, it was misdiagnosed because now I'm sitting here in front of you with multiple cirrhosis. So there's like a whole other journey within that journey, from that moment to this one. 

ZOE: How long did that take then, between the misdiagnosis and then being re-diagnosed? That's horrendous shock to your body.

ROXY: Eight years.

So, yeah, I was living, like, life. I was still doing fashion because to me, I looked a bit of lupus and stuff and I thought, well, it affects your mobility, but it doesn't look like it's going to end anything. And I was having loads of emotional moments, like literal mood swings and stuff, and kind of going through, like, a level of depression.

But, you know, when you're younger, you're just like, I'm just going to keep going, I'm going to keep going, I'm going to do it, I'm going to get what I want out of life. And I kept feeling like, why can't I feel like, why am I feeling like I can't do what I want to do?

Or why am I having this emotional reaction? Or why. What started happening to me was I was getting on trains, going to university and stuff, and I would just pass out on the train and I was, like, completely gone. Ko'd There was a few times when I was in Shepherd's Bush waiting for my partner and I would Ko and I'd wet myself and I was like, this doesn't seem like Lupus.

Like, I've spoken to other people with Lupus and they are not giving me this as feedback into what their experiences are. But I kept going, kept going, maybe I don't know what I was rationalising, but, you know when you're in a moment and you have a goal in life and something's happening and you kind of just try to see past the moment, you're like, I'm going to get to the end and then we'll just deal with that after. I kept going, started getting, like, part time jobs was doing Fashion Week, was styling shoots, like carrying multiple bags down, like, Shoreditch High Street, thinking I could do everything. And then one day I was at work and I was trying to get clothes on the rack and I couldn't do it. And my manager was like, look, I know that you have things going on, like illnesses, and obviously something's not right here. You need to go and get this checked, so you need to leave work and we're going to send you to A-E-I was in Kent at my partner's house, so thankfully, I wasn't in London where I lived myself.

So when I went to the hospital, they didn't really know my history.

And I was just telling her, the doctor was like an order that came around and I was telling her, literally, about what they thought he was moving with, what was going on. I was getting therapeutic lumber puncture. And if you've ever had a lumber puncture, you know that's not therapeutic.

It's the worst pain ever, so it's not fun. Every six weeks in between all of this, and she was like, look, your face has dropped, so you've got, like, paralysed face on one side, if you can see that. And I was like, I can't see that. She was like, yeah, you have. And everything you're saying to me doesn't really seem to be correct for what you're showing me right now, what I can see and just looking at you. So can we retest you? Can we retest everything that you tell me and we'll give you another lumber puncture. And at that point, I was against lumber punctures because I've had too many and too much trauma. And she was like, I promise you, I'll give you an answer, but I feel like it's something called Multiple Sclerosis, but I can't be sure unless you allow me to do these tests.

Reluctantly, I said yes, because I felt like whatever I was dealing with wasn't what I was presented first and foremost. And she was actually the first person to even give me any sedation while having a lumber puncture. So I was thankful for that, too. And a few weeks later, she called me up and was like, yeah, you definitely have Multiple Sclerosis.

And I was like, okay, great. Don't know what this is, don't know if it's good or not, but it felt relieving because I at least knew that I wasn't going crazy, and I knew that what I thought I had and I was not convinced by it. I was right. I just didn't know what else it could be.

JENNIE: So how long ago was that, that you then got the final diagnosis of MS?

ROXY: Hold on, I'm 35 now. Nine years ago. 

JENNIE: It's such a huge thing, isn't it, to kind of go through and then go and get misdiagnosed and then eventually get that. And I think that thing that you said about that kind of sense of relief that we hear that from so many people. I know I felt like that when they kept misdiagnosing me with my autoimmune condition. And finally, it was as horrible as it was, I was like, okay, I know what I'm dealing with. I have lichen sclerosis and Zoe has arthritis. And very similar kind of story in some ways, isn't it yours, Zoe? A young age. 

ZOE: Yeah, exactly. Going through that change of suddenly, yeah, I was on my way to university and then getting diagnosed, becoming really ill. Yeah. And then you have that whole shift in your life goals. I mean, at least you were very positive and you were able to sort of persist physically. I genuinely couldn't. I was in bed for two years.

And then you just have to reassess, don't you, who you are? And you go through that grief and the anger and all of those emotions, which I just imagine were even more complex because yours was then misdiagnosed. So you had to relive another diagnosis and another, what does this mean for me?

ROXY: Yeah, especially because for me it was like, oh, you're brown, you can't have MS, which is weird because my Mum's white. Like, my mum's white Irish woman. I have white genes as well as I have black genes. But back then they didn't see as something that anyone that was brown would have dealt with.

So they went to something similar but not the same, and was like, well, clearly it's Lupus, and also you should probably lose some weight because that's probably not helping you and that's probably a cause of this. There's all these things that came from it. And then when I got that diagnosis of MS, the relief came, obviously, but then also it put me into a relapse state, which meant then all these symptoms came about.

So then my walking started changing and then I realised that my cognitive functioning or trying to focus on anything wasn't really working. So then I did go through two years of depression. My partner had to really help me because I didn't go outside of the house and I had to drop out of University.

So I never really got my degree. I only ever got HND and that sometimes I don't know anyone else that goes through a University while having an illness and knowing at least back then, there wasn't any support. So it was basically like, oh, you're ill. you got disability. Okay, great, we can't do anything. See you later. And then obviously that kind of stressed me out because I was like, oh, my God, like your younger self, and I'm sure maybe you can relate, is like, you have this goal and you have this thing that you want to do, and you put all this emotion in this investment, and you can see it, you can picture it, but you can't really grab it. That really did mess with me. 

And I think having that emotion and that experience and also being misdiagnosed and with MS, now we know when you get diagnosed for MS, you need to take treatment straight away. That's the best trajectory you can get. But for me, I had the eight year delay, so obviously now my light less of my body is so much weaker than my right.

And I can tell that when I'm doing, like, yoga or just walking in general, that could have maybe been avoided if someone would have actually taken on board that actually, I'm more than just one thing, especially as a mixed raced person, we have multiple genes. And maybe considering that and not just putting it down to being, like, fat or brown and just actually doing a more discovery and actually testing my spinal fluid, which right now, after all my advocacy, I know it's the most simple thing you can do to give someone an MS diagnosis.

And all that sparked the advocacy, can't speak MS, and my journey of why I'm here today kind of thing.

JENNIE:  I can see, like, you're sitting there and you've got this Buddha sat behind you, and you've got a beautiful background. It looks very calming, because naturally, there's so much of you that you would think would feel quite angry and bitter about the fact that you didn't get that diagnosis. And like you said, it was like, eight years too late.

Has it been part of your process to kind of work as an advocate, as you say? Is there part of forgiveness there somewhere, or is there anger? Because we know that can manifest itself in your body, can't you, and not help you get better? How do you deal with that?

ROXY: Yeah, that's the thing, right? So when I couldn't leave the house for two years, I was angry, I was depressed. I was like, what is the point? Like, I'd literally given up. And it was my partner giving me certain books to read and trying to kind of create a new perspective to me and being like, yeah, I know you're dealing with this, right, but there was so much more to you than just this diagnosis.

Yes, it's going to be a massive part of your life, but look, all the things you want to do, we can find a way of reframing that or releasing that emotion, that energy that I have, because ultimately it is manifesting in my body. And having a central nervous system illness is not helpful to be angry all the time. I am making myself worse, but I didn't know how to release it. Like being very punk back in the day and being anarchist, you just held onto the anger like it was a ball and I couldn't let it go. And that's when I started doing yoga and stuff.

And I know it's like the saying, oh, yoga, yoga is never going to cool you. It's not about that. But it was about finding a place to release my emotion. Started journaling, started honestly having truthful conversations with myself. Yes, they were emotional. Sometimes the pages were like cried tears, like the words had gone.

But I needed to know myself how I felt about what I was presented and then kind of figure out what do I want, because I didn't know what I wanted. And I was like, right, the goals I have, are they even achievable anymore? And I was angry about that, but I was like, but what could you do?

How do you make what's been presented to you work for you? And I didn't know how, but I knew that I still love fashion and art. I knew that I loved being free, and I love speaking and conversating with people. And I also know that I didn't want anyone to feel like me.

I didn't want anyone else to feel this emotion I was feeling because it's intense. And I was like, well, what can I do? And that's why I started the podcast. I thought, look, if I speak to other people like me, A, it's healing for me, I'm learning something and it's probably going to be healing for the other person.

And that's how it started. And then I also done it while trying to look good because for two years I wore pyjamas, and for two years I couldn't put makeup on because I physically couldn't hold the things properly. And I didn't know how to navigate that. So I started my journey of re-self discovery, I'll call it.

ZOE: I think you've hit on such an important part because I think that's what determines how you deal with an illness, a disability, a change in life, isn't it? It is the mental side. We can all experience the same physical thing, but it's our reaction to it that determines whether we thrive or not.

And I had a lot of therapy to sort of come to terms with my identity and a bit like you in the fact that you knew what you wanted to do. I went to do a sports degree, I wanted to end up working with sports teams. And so then I felt like that was the biggest blockage ever.

I am now in a wheelchair, can't walk at all. What else can I do? And you have to sort of navigate, don't you, another pathway of like, right, what interests me. So I went down, like, nutrition. I thought, well, I could still work with sports people doing that. And then I ended up going down the counselling route because I just recognised its benefit.

And I'm like, you like talking to people, like digging in there, being nosy, really.

But it is having that understanding of yourself and talking to people that helps you heal, because you're physically, I'm not going to heal, same as you. We're still going to have to live with it. It's the mental side that gets you. And I really feel that the medical model doesn't really deal with that. If I go to see my consultant, they'll look at what's wrong and like, oh, has this got worse? And, oh, maybe we can inject you with this. And I come out going, oh, my God, I'm really ill, or I really can't move anything. Oh, they really said that I'm very disabled.

It's just depressing. And I always am so grateful that I see an osteopath and a counsellor and an acupuncturist, because I'm like, I come out of those sessions beaming, understanding, my body, feeling positive. And I think I feel so sorry for the people that are literally only going to see a medical doctor, because the negativity that you fill out of that is only going to just fuel the negativity in your body, isn't it?

So, for me, having that outlet is vitally important with how I deal with my illness.

JENNIE: I think it's really good to have these conversations because so many of people have this medical model, as you said, you both said, and I understand there's a place for that. And it's a bit of an elitist thing sometimes because it's expensive, isn't it? Alternative therapies can be really expensive and really difficult. But being able just to know that there's other avenues down there and, like, listening to your podcast and hearing somebody talk about this journey.

But it's also hard because you're not always going to be the shining light, are you? Sometimes you can have shit days, and it's important to say today's a shit day or shit week or a shit month and own that as well. Do you feel people respond quite well to you just being just very honest and transparent about it all?

ROXY: I do. I will say now I have less shit days, to be fair, but I think that's because, like you said, going through therapy and stuff, like having that CBT therapy, I'm seeing less shit things in my life.

Is the cup half full, half empty? For me, it used to always be half empty. And now I'm in a place where I feel like everything's half full. Because I'm just grateful for being alive and breathing and having people around me that understand me more than I thought. Like, I'd ever get, like, going to those medical establishments. Great. I love my neurologists. They're great and everything, but there's nothing like speaking to someone else in my community that really feels like they really understand me. So for me, I've had to be like, if you can't have a wash today because MS is winning, that's not a crap day. What would be a crap day, to not even wake up. Because that was a possibility at one point in your life. You've got the air brief. You've got people around you that love you. And to be honest, I've met people that you would say, quote unquote, is in the worst position with me of MS.

Like, whether they're in the wheelchair or whether they can't even get out of bed, and their actual attitude to that are so amazing. I'm like, what am I complaining about? Really? What have I got to complain about? Nothing. Literally. I don't. I have crap things happen, yes. But I can let those things win, or I can realise I can breathe, take a moment if I need to stay in bed today, be okay with that.

And that took me a long time to be like, look, you can't do. Or I don't know about the rest of you. Like, if I go to you, oh, let's all go for a drink tonight. And you go, yeah, great. And then it gets halfway through the day and I'm like, I physically can't do it.

I used to cry because I'd have to say to someone, no, I can't too close to the time that I'd go out and I realised, no, you can't do that to yourself. Like, they're meant to know they're meant to be friends, they're meant to love you and you love them, and they know if you could show up, you would.

So it's okay to say no and understand the boundaries for yourself. And I think that's how I've reframed and tried to train myself to not feel like everything's shit. And I think because I'm honest and open with those conversations, people relate to that. And also I hope or I don't know, because I don't want to speak for the people, that they gain something from that as well. To know that it's okay to set boundaries in your life because it is a central nervous system illness. And all that emotion coming from it or coming from how you feel about letting other people down is not helpful. But also, I've cut a lot of people out of my life that have made me feel guilty for being ill and having disability because that wasn't good either. And really, you're not my friend. And I've met way better people on my journey from that.

ZOE: I find that a really difficult thing as well. I like to go out, I like to see people, and I see it as not necessarily that my friends are judging me, it's me judging me as a failure.

And also as a comparison, I very much spent my 20s comparing myself to my friends. And it was only in therapy that she was like, that is so unfair on you. She was like, they're not living your life, so don't try and be living their life. What you're going through in a day is nothing like that.

And you're like, oh, yeah, okay. Because all you want, I very much found, like, I just want to be the old me and I want to do what my friends are doing. And I don't like to moan, and I don't like to sit and take ten minutes to describe to somebody how it really feels.

So then I sometimes think, oh, no one understands, really, like, just how tired I am. It's not tired. It's like I can't move tired, I can't speak tired. And then I'm like, oh, but I don't want to be the moaner, so I'm not going to say that. And then you get crossed that they don't understand it and then you're like, have I actually told anyone?

So it's this huge vicious circle, isn't it? And you're like, you pray and sometimes just like, oh, I just wish I had the energy. But the reality is we haven't. And like you say, some friends really understand it. Other friends are like, oh, yeah, I know, yeah, I'm really tired when I get in from work. And you're like, and you're refreshed. That doesn't happen. I can sleep for 12 hours and I still don't feel refreshed. So it's really difficult, isn't it, because you don't want to go or I definitely don't want to go down like that comparison tool of, yeah, but you don't understand what it's like for me, but I do need people to understand what it's like for me. So it's my responsibility to tell people.

For me, that's come with a bit of maturity, of accepting myself and then being okay to talk about it and say, this is how it is and owning it a little bit more, whereas I always apologised for it very much. And so I think platforms like yours where people can be listening in and going, all right, okay, she does feel like that, too, it validates you, doesn't it? And then they can go and tell their friends how they're feeling more confidently. I think by listening to you.

JENNIE: I think we are talking about all of this and I think it's really, and I know producer Kate is listening very brilliantly, thinking, how much have I got to edit out of this? But also producer Kate has ME. And so we have lots of conversations about the saving spoons and about, actually, I don't want to go out tonight. I just want to wear my pyjamas, you know and all of that and having those conversations. So I think it's really good that we can have those conversations more, but I now want to bring it on to the thing that we really want to talk about more than anything.

Can we talk about sex? Can we talk about all of that? Because you have mentioned a few times your partner, has this been the same partner that you've been with for a number of years? 

ROXY: I have been with my partner for 15, almost 16 years. 

JENNIE: So how has that been for the two of you?

Because not only that, 15 years is a long time, isn't it? So you change anyway. Whether you got a disability or not, you really change as people. So how's that been? That sense of communication and their support with you and obviously you supporting back. What's that look like for both of you?

ROXY: Well, that is a question. So they've been amazing. Me, I'm like the devil reincarnated. I think, it takes me through every month, like a mood swing. It affects your emotion so much and I am terrible. I'm so open and conversating in this kind of scenario. When it comes down to those internal things that you probably should be talking about but you don't talk about, then you internalise it and become passive aggressive. That's very me. It's Aries energy, like, fully. 

And sometimes I think, I don't know how they're coping with me, but I get that they know that's not me, as in my whole thing. That's like a moment in time that my illness has kind of affected me, especially around that time of the month where the hormones go awry and then I'm like, become nonsensical.

Everything's an emotional reaction to everything. It doesn't really make sense. I don't think I'm being emotional. And the thing about it is you kind of realise that you should know this by clockwork already because you've been dealing with the same thing every month for years, but you forget and then you're like, all of this and then you're like, oh, she's coming.

She's definitely coming. 

That's why you're like, why is everything so emotional? Why am I crying like Daria on television? It's ridiculous. And then it takes my cognitive self to be like, Rox, Aunt flows, coming! It's a moment and I'm having to like, okay, sorry, I know it's me again, and I don't know how anyone deals with that because I'm a lot anyways, and then add an illness on.

It's like, I'm just lucky because they're everything I'm not. They're calm and they are focused and they're considerate and they're all the things that I think that maybe I lack and maybe that's why it works. But I could never date a me, do you know what I mean? 

ZOE: Be too much.

JENNIE: That's amazing, isn't it? To be able to kind of sing someone's attributes so well. And obviously you must have loads going on as well, and you do. The fact that they're so supportive and. And love you so much. 15 years is a long time to be with somebody, isn't it?

So sex changes anyway, when you've been together for such a long time, it just does, doesn't it? And then when you've got again, that added flavour of illness on top of that and your libido, especially with MS can go up and down and change. What is it that works with you guys?

Is it purely communication and being able to speak about things? What's the magic recipe? Tell us, because I want to buy it.

ROXY: To be honest, for someone that speaks so much about sex, I don't think I speak about much about sex in my own relationship. That's something I've come to realise. Everyone's like, oh, you must talk about sex all the time in relationship. I'm like, I actually don't, which is weird because I never shut off about it outside of my relationship.

I'm constantly conversating about it. It's like I want to save the world sex drive one vibrator at a time kind of vibes. But I think it's because we kind of, have you, like, that conversation that's unspoken, where it's almost energetic and you kind of allow each other's aura to play out. I think they now know from previous conversations, like, MS makes my libido really weird. Either I'm way too turned on, way too wet, and everything's like, I'm like a hormone monster and I want everything and I want it now, or I'm the opposite, where I don't even know I'm horny until last minute, so someone has to turn me on to tell me. Then I'm like, oh, I'm here. I'm like, I'm present now. Come on, let's go. 

And I think for me, it's just. I don't know, I'm in a safe zone. So I think foreplay and stuff like that is helpful and just remind each other that we do love each other.

If I can't do it this week, it's not because I don't love you. You're gorgeous and probably too gorgeous and too great, but I'm just, like, on a whole other plane. And then sometimes I think that, and then all of a sudden, give it an hour and I'm like the opposite.

So I think it's just knowing that I change like the wind.

I really do. And sometimes just bringing a sex toy into the scene or suggesting, like, I don't know, I don't want to say setting days because I used to do that, but I don't do that anymore where it's like, oh, Tuesday sex day, yay. I'm trying not to do that as much and try and let it be organic.

So I think it's like being intimate and not relevant has to be sex. Like hugging, touching someone's leg and little kiss like being grateful, showing gratitude to the other person, eventually, for me, ends up being sexual.

So it's an easier way of navigating in. But then if someone else in the relationship doesn't want it, whether that's you or your partner, then it doesn't feel so intense, like, I want sex. It's very much like, oh, no, we're okay at this level of intimacy right now and we're both happy with this.

And then maybe this will go forward, or maybe no, won't. Maybe it will be tomorrow, but when it does, it'll be great, because it always is. It's just how you get there that's different. 

JENNIE: Yeah. And it changes, doesn't it? It does change. I mean, you joke about putting the days in, but sometimes you have to do that, you have to be organised, because otherwise I am learning more and more people that I meet, the more people that talk about sex and advocate, most of us are having less sex than anybody else because we're talking about it so much.

But it was really interesting, actually. I was talking on a panel last night at a university, and I just thought, how am I going to be relatable to all these really young 18/19/20 year olds as a 44 year old woman? How is that going to be relatable? And the other people in the panel were amazing.

They were really wonderful. But so one of the questions was from one of the students, is like, how do you feel sexy? How do you make you feel self feel sexy? And the other two panellists were really vivacious, outwardly sexy people. And I was there with my Mum jeans on, because, if nothing else, because of my condition, I have constant vulva pain and I can't be comfortable for very long. I can't wear knickers, I have to wear baggy clothes. All these sexy things just are really uncomfortable for me. My fashion is dictated by my condition. So they were dressed up and they were talking about all these things what make them feel good and underwear, etc. And then it was my turn and I really had to think about it and I was like, actually, probably what makes me feel the sexiest is being comfortable, and that sounds really boring, but making me feel like me and that I'm relaxed.

So whether it be in my pyjamas or I love going on paddleboarding, I love being on the beach, I'm just in my swimming cushion, my bikini or whatever, I can do that for a while, but it's actually about being me. And I think there's this kind of pressure about body confidence, and feeling amazing and feeling dressed up. And there's absolutely something to be said for that. Don't get me wrong, I know it's important, but we can't always do that all of the time, can we?

It's not always possible. So it's being able to have those conversations and allowing a space, a safe space to fill you and go, actually, this feels good, or this doesn't feel good, or I'm too tired. But having someone remind you, actually, that you are feeling a bit horny and that actually, oh, God, why don't we always do this? This actually is really good, isn't it?

ZOE: Like, so many people write into us, and it's all about they want to have intercourse, or we can't do that anymore. Like you said, it's the intimacy, it's the touch, it's the cuddle that's still remaining that connection, isn't it? Maintaining that connection. Sorry. And then when you feel like it, you can. But it's not going from nothing to the full thing. Like so many people, I think, either say, right, we're not having sex, or we have a really good sex life. And it's like there's so much in between, isn't there, that that's where that relationship is going to come from and the understanding.

I wanted to ask, actually, you've been in a partnership for a long time and feel very confident and secure. If you were to be out in the dating world now, because we obviously get a lot of people wondering, how do I disclose my disability, et cetera? Would you feel really confident now, like, talking about maybe your sex drive with a new partner and saying, sometimes I'm going to be too tired? Do you own it enough now? I think I'm imagining that you do. Or do you think you would find it really difficult being with someone new?

ROXY: The only reason, it's like two things. I would definitely be open, honest about my disability, but that's because I've come to terms with who I am in that sense. And I'm a sexual being. I do have a disability, but I also think I'm awesome. So I think at this point in life, I'm like, if you don't want to date me because I have MS, that's your loss, not mine. Because I could have rocked your world and poor you. But that's just my arrogance. But I would say my only reservation of new partners is the fact that it is more about them understanding what works for my body. Because sensations change. So I can be hypersensitive or have lack sensitivity and it's that kind of like, I'm not in the space where I want to have random casual sex with people, and I don't think I want to have one night stand. I never really have anyways, because I think that's a lot for me to divulge in someone that I might see once or twice. Whereas if I'm looking for that longer term partner, then I would.

And I just think it's like, it feels so weird to be like, oh, I'm going to touch and feel someone else's body after so long.

I go to clubs that are like, sex positive clubs. So it's not that I've not been around nudity and sexual exploration, but it's just the fact of then going to do it myself puts me in this weird space where it's more like, am I going to be any good for someone else?

Because you get so used to the person that you're with their body, what turns them on, what really gives them pleasure. It's exciting, but also frightening to look at doing that with a whole of a person.

JENNIE: I think you hit the nail on the head really there for a lot of people I like, myself included, it's like the thought of going, I mean, I've been to clubs before, but that was actually before my illness, and I never really did anything. And the thought of going to a club, partly it really excites me. I'm like, I want to do that. This is kind of what I do for a living. I talk about it, I'm around it. I talk to people all the time. But then actually, the thought of going to a club and being touched by somebody that could really hurt me could really cause me some, quite a lot of damage and a pain for a long amount of time terrifies me.

So I end up just really pulling back and then never going and doing those things. And I feel there's kind of got to be a middle ground. But as well, as much as I advocate it for other people, not really doing anything about that myself, because there's this fear there that's stopping me.

But I think that's okay to own that as well, because sometimes Zoe and I, we've talked about this a lot. There are people sometimes that listen to our podcast and your podcast and think, oh, God, they're so confident. They're always talking about this all the time. They're out there and doing it and actually alienates people sometimes because they're like, but that's not me.

And it's okay to go. It's not always us as well. Sometimes we do those and other times we stay in safe bubbles because we can. And it's okay to feel like that, but I think that's a challenge that I need to set for myself. These new goals of not necessarily to have sex or penetrative sex, but just to be able to have the confidence to go to these things and feel that everything that you said, I'm amazing, I'm awesome.

And I don't think that's arrogant. I think if no one else is going to self believe in us, who else is going to do it, right? I think that's an amazing attitude to have, but I think we need to be talking about that a little bit more. I think that's great.

ROXY: Definitely, for sure.

And I do think there's other clubs you can go to. So I'd say like going for someone like going Torture Garden might be intimidating because it's like a stand kind of club and there's like boys and there's dungeons, all that stuff people might be like. But then you can go to someone like club pedestal, especially as a feminine person, where actually it's about worship of feminine individuals.

So you go to a place where actually the power dynamic is slightly different anyways, and then basically you can set what you want because you've already been put in a dominant place. So the person that comes up to you knows that they're there to serve. So it's also just like kind of knowing what it is that you're into is always a good way of understanding maybe what club to start at and how to go into that scenario.

So like for me I'd realise now would I just go in a more of a dominant space where maybe before I was more submissive, but I think having an illness and disability has put into a place where actually now I want to be in control because maybe I'm realising there's some things I can control. Maybe my health is one of those things that I can't always control. So I found control in other places. 

JENNIE: That's interesting actually, because I have been to Torture Garden a number of times, but I think I went back in the day and I just kind of went there, enjoyed it and danced.

I had a great time. I had a really amazing time and like taking it all in, but I think that, yeah, that's great, basically. Can you help me and advise me on some of the best clubs to go and then might give you a ring. Can I come with you?

Because it's that thing, isn't it? Of having the confidence of being able to go and do those things, even if you don't do anything, just like have it in your mind and then you can take it home to your partner or whoever you're going to meet. It's just really empowering.

ZOE: We've also had people writing into us as well that want to go to a sex club that are physically disabled. And I was going to say to you then, with your experience, have you seen anybody with visible disabilities there? 

ROXY: Yes, but not all clubs are accessible. There's a few newer ones.

I think actually one of the people that was on the panel with you yesterday, one of their clubs is actually more accessible than most that I've seen. And then there's a few other places that are a bit more one level because places like Scala it's a like a great club, but it's not disabled friendly at all.

Like even I having a mobility aid after a while I'm going to do sit on the floor and cry a little bit because there's too many stairs. Electroworks has disabled friendly levels, so you wouldn't be able to navigate the whole club, but there's spaces and stuff that you would actually still be able to have a lot of fun in.

You just wouldn't be able to get to the second level because there's no lift.

But there is people with visible disabilities that definitely go. I have friends that go and they have very physical disabilities and no one cares.

ZOE: Because we've not had the most positive experiences. When we've tried to contact sex clubs, a lot of them have either ignored us or said that they don't have access.

And then they've spoken about the rejection element of saying we can't guarantee that somebody's going to interact with somebody with a physical disability, then that could also reinforce the negative self esteem.

It hasn't sounded that positive to us yet, we have people asking about that. So I'm really interested that you've said that now because that will help us answering people. Do you know the name of the one that you said that is accessible? 

ROXY: I think One Night Parties is accessible, but you have to sign up, you have to get verified.

So they verify people to make sure people are like a DBS check, but not a DBS check, to make sure that you're not a danger anyone, that you understand the rules and regulations and a lot of spaces do now. So even Torture Garden, they have rules and regulations and stuff like that to make sure it is an inclusive, diverse, welcoming space.

ROXY: So is there anything before we. Because I think we can talk and talk and talk about it, but we've covered so much. And is there anything really that you kind of want to say to the people that are listening? Obviously, you mentioned we'll put all the information about your amazing podcast and everything else that you're doing as well.

But anyone who's just kind of going through the process of being diagnosed with MS, anything you'd kind of like to say? 

ROXY: The main thing I'd say is, like, be mindful where you look for your MS information, for one, not everyone's narrative is the same. Don't do what I did and go down the rabbit hole of Google.

Google's always going to give you the worst case scenario, but we've come so far in MS. Research is actually one of the neurological conditions that have actually had the most advancements in treatment, and we're closer to the 'quote unquote' cure than we ever have. Everyone's journey is different. It's going to affect you differently.

But there is a silver lining at the end of this rainbow, because ultimately you can get a good quality of life. You can still achieve a lot of the things that you want to despite MS. And to know that there's amazing community, especially on places like Instagram, that are ready to embrace you and to help you in every step of your journey, is the place where I found the most beauty.

And without that resource, I don't think I'd be able to do what I do now, having those people that will conversate with you. And we have people from every age, so if you're like 13 or 100, there's spaces and places for you to conversate with, people in your age range, and that will understand you in what you're dealing with.

So that you don't have to feel like either you are speaking to your family who love you and care for you, but maybe you don't understand, or just speaking to a medical professional. And I know that I've had to learn their language because they speak a whole other language that sometimes feels so complicated.

And there's loads of places that have resources in what we call layman's terms, so that you can get to grips of what that is and start implementing things into your life to give you a better journey going forward. 

JENNIE: You speak so eloquently, you really do. And I think if I was in that situation and go through a diagnosis, just hearing you speak like that would just give me a place of hope.

And, like, we know the fact that we get down this road, we've all done it, when we've been diagnosed with something, go down to Dr. Google, don't we? And go down this horrible. I had to come off all the forums that I was on because it was just a horrible, negative place. I was just like, oh my God, this is a nightmare. This is just, negative attracts negative. And it was just like ahhhh, so thank you so much for ending on that and I've really enjoyed this chat. I've really enjoyed it. And hopefully we can share information as well and like I said, share all the clubs that we were talking about and direct people that come our way through the love lounge thing that you're doing.

Thank you so much for taking time out. It's been brilliant chatting to you.

ROXY: Thank you so much for having me. thank you both of you. 

ZOE: Thank you. It's lovely. There's been so many layers to it as well, which I've really enjoyed. So I'll absolutely be tuning into the Sick and Sickening podcast from now on. 

ROXY: Thank you, bye.