Episode 6

Ep 6

To say we’re out of our comfort zone today is an understatement. Today it’s all about relationships and sex. Inflammatory with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie and Katy. Last week was a tough and emotional recording for us, but we want to be completely honest about living with inflammatory arthritis. The feedback we’ve had has been great and whether you do have inflammatory arthritis or not, don’t forget there is help out there. You are definitely not alone. You can see more information on our website, inflammatoryarthritis.org.

But this week we are changing topic. To coincide with Valentine’s Day, we wanted to talk candidly about sex, relationships and the impact inflammatory arthritis has. Again, this is a topic that doesn’t get talked about enough, but we will and we will discuss the impact it’s had on relationships, past relationships. Do we actually have sex whilst flaring? So there is lots to cover.

But first of all, Katy, lovely to see you. How’s your week?

Katy: Had a really good week, thank you. And actually today I’ve just been back to hand therapy. Lots of jokes can be inputted there. And really great session actually and really shown how things like this have changed over the last, I think, 13 years is probably the last time I went to hand therapy. The lovely guy, Kyle, who I saw today was great and sort of really talked me through how kind of our pain pathways work, how kind of actually thinking positively can probably impact how we’re feeling day to day and how we think about our disease.

So just to be clear, actually the hand therapy is more related to my osteoarthritis, but obviously he also talked to me about how kind of my flexibility can be improved in my wrists and how I can kind of maintain my joint sort of strength, mobility. And he talked about a triangle. I love a shape.

Debbie: Tell us more.

Katy: I can’t remember the third point, but which is useful. So there was mobility, strength, oh, and control. That was the third. And how you kind of want to make sure all of those are doing well to have the best sort of way of being able to utilise your joints. So that was really interesting.

And I actually really enjoyed that 30 minutes this morning. So I think I’m going to have to put that into practice and think about stretching around my wrist joint and continuing some of the strength work that I do. How was your week?

Debbie: Yeah, my week, probably slightly opposite to yours.

My wrists have been flaring. So it’d be great to kind of hear what exercise and everything that you’re doing to that, because it’s just, it was so painful at the weekend and it kind of, I don’t have many plans for the weekend, but it kind of scuppered going out for breakfast with my husband because I didn’t want to be sitting there having him cut up my food for me. So that’s just a, I know I’d rather stay at home.

So yeah, and also my hips been slightly flaring this week as well. So it’s just a bit, just a bit painful. It just reminds you that it’s constantly there at the moment.

And I’ve also had parents evening, my children, the eldest is going through A-levels and my youngest is doing GCSEs. So, it’s quite a stressful household at the moment. And the pressure the schools are putting on our children and as parents as well, it can be quite overwhelming.

So, it’s just making sure that the kids are still having a bit of a life as well, because, you know, it doesn’t end, you know, if you get bad GCSEs or A-levels, life continues. So, it’s just trying to get that across as well. And my eldest had her rheumatology appointment, which is, we are so lucky where we are.

She has a really good adolescence and young adult clinic, which is such a postcode lottery, but we are so lucky that we have them. And the care that she receives is fantastic. And we were talking about, this is probably a topic that we really have to cover, will be when you travel with your medications, because she won’t be able to travel.

She’s going to be traveling Europe on train, so she can’t take a fridge with her. So it’s just something thinking about, you know, what will happen if she flares. And obviously for me, it was just like, oh my God, my daughter won’t be with me if she’s flaring.

And I, yeah, so I will worry about that when she goes, but as long as she’s having a great time, you know, she’ll be fine. And I had a hygienist appointment this week. Again, another topic that we really do need to cover.

How do you brush your teeth and clean them properly when your hands are flaring? I found it tricky. And I think the hygienist picked that up as well. And it’s just hasn’t been as good as it kind of should be.

And also kind of getting back to inflammatory arthritis world. I had a meeting today, we’ve had a new JIA report out on review of the quality of care across England and Wales. Really interesting report and amazing recommendations come out, but I think we should leave this and come back to it for Word Day, which is the World Young Rheumatic Diseases Awareness Day on the 18th of March.

So we can kind of talk about that there. And I’ve also, fantastic news. I’m now a trustee of the Teapot Trust.

I don’t know if anyone’s heard of that, but that is an art therapy charity for young people who do have juvenile arthritis and other long-term conditions as well. Kind of getting back into the mental health side of it and really kind of supporting children. So it’s a fantastic charity and I’m really proud to be now part of that.

Katy: So I think we probably want to get onto today’s topic. And Debbie, I think it’d be great to start with you because you’ve been through your adolescent years and your kind of young adult years having inflammatory arthritis. So how was that for you in terms of relationships, sex? How did you approach those kind of topics with people as you met them? Yeah, I must admit, I’ve been thinking about this and do you know what? It was tough.

Debbie: It really was. I was 15 years old, and I had a really, really bad time with my inflammatory arthritis. I was flaring really badly.

I was on crutches. I couldn’t really walk, and I was kind of like bed bound for quite a few weeks on end. And obviously this is kind of around the time when you kind of meet boys and hormones kicking off everywhere.

And I did meet a few kind of obviously when I was well, I was out and about sort of thing, but I always knew that I’d have to approach this conversation. And it really kind of took a lot of courage for me to really talk about it and even approach the subject that actually I might not be well. This is a disease I’ve got.

It fluctuates. I might have to cancel dates and things like that. And a few times blokes did actually laugh in my face.

It was like, well, okay. And then I never heard from them again. And you’re like, oh my gosh, really? Is this what my life is going to be like? But then growing up, because again, the impact it’s had on me and never been on long-term treatment and being on steroids, that it changes your looks.

It really changes your face. And I think this is why I don’t have many mirrors in my house at all. Generally, the first time I see myself is when I do a team meeting or something like that.

I don’t have them because it really hits home to me that I have this disease. I have something that changes the way I look and my mood swings as well. So, I never wanted to be a burden on anyone.

And after those conversations with blokes, I was just like, you know what? I didn’t want to be a nun, but I wanted to live alone. My dream was to live in London, apartment over the Thames with a Porsche in the garage. That’s all I wanted in life, nothing else.

But then it wasn’t until I went to university that, because I put it this way, I went to an all-girls school as well, which is never the best thing. So, when you go to university, you do meet more boys, you know, and everything. And it was kind of like, okay, so a few kind of one-night stands again, because I didn’t want to ever approach that subject at all.

I just thought that would be it. And then I did meet my husband there at uni. We actually lived next door to each other for a year beforehand.

We were friends and he knew that I had this disease. He didn’t know much about it, but I think he knew that I had ups and downs, but I knew that he liked me. And it was just like, well, okay.

So, we kind of got together after a year and I break it off because I didn’t want to hurt him. I didn’t want to be this burden. I didn’t want to end up having to cancel dates and things.

And because obviously I have it in my hips, I know that it can be painful. I wouldn’t want to go there. And I just thought I couldn’t deal with it at all.

And then I went through a really bad time again with my arthritis flaring, but he was so supportive to me. And it was like, okay, maybe this can work. Maybe I could have a boyfriend sort of thing.

Katy: And how did you approach it when you kind of broke it off? How did that happen? What happened next?

Debbie: Do you know what? I sent a message by text.

Katy: You dumped him by text? How awful.

Debbie: I don’t really ever think we properly kind of spoke about it afterwards, but then I do feel really bad.

And I think my kids, if they’re hearing this, like, oh my God, they feel so sorry for their dad. But yeah. So, when we then, I can’t remember how we kind of then got back together, but I do remember having a phone call with him.

And this was the point where you had to pay lots on mobile phones to speak to someone else. So I think the phone call cost me about 10 quid. So I was reminded he owes me that money.

And it was just kind of just talking on such a deeper level that I’ve never had with anyone else. And it was, I think it was just, it left a few barriers down on me. Not all of them, to be honest, but just a few, just to kind of let him come in a little bit.

So, we could kind of take things forward a little bit more. But has that ever happened to you?

Katy: Well, no, because when I was diagnosed, I was with my husband, now my husband, boyfriend at the time. But I do think I probably questioned whether I wanted to be with someone when I was first diagnosed because I was worried that he was going to end up being my carer. I was worried I wouldn’t be able to go. We were kind of traveling quite a lot of the time, kind of doing exciting holidays. I guess you don’t do it so much when you’ve got a family.

And there’s that fear of what am I going to be able to do in the future? So definitely that sort of thought process of I never wanted to be alone. I definitely differ on that sort of side. I think I’ve always wanted to be with somebody, but that’s probably because I grew up without this condition.

So, I know what it’s like not to have those worries when you’re going into a relationship, meeting people in bars and clubs and just having a general fun time as a young student and someone in your early twenties. But absolutely, it’s a scary, scary thought when you’ve got that diagnosis and wondering what that means for you and who you’re with.

Debbie: Oh, completely. And I think that’s why I really did feel I didn’t want to be a burden on anyone at all because I think we’ve realized that I didn’t actually properly deal with my diagnosis, again, just being told to get on with it. I didn’t want anyone else to feel like that either and to kind of have that kind of on me. But getting back to kind of what we meant, obviously we’re here to talk about as well.

When I was well, our kids and parents, please don’t listen to this bit. Our sex life was generally okay because when I’m well and I’m not in pain, I was obviously late teens, early twenties. So actually, you know, why not? So, we did actually have quite a good sex life.

But then I do remember there are a few times, put it this way again, if you know me, you don’t have to listen to this bit. I’ve got arthritis in my jaw. I’ve had it again since I was very, very young.

So, there are things read between the lines, there are things I cannot do very well. It gets really, really stiff and so painful, but the repercussions of that means I then can’t eat for like over a week because it’s just so painful and so sore. So, it may be like a few minutes of amazing pleasure for him, but for me, it’s then like a week of absolute agony and just not being able to eat.

And there’s also times when it’s been in my hips that, you know, obviously you’re having a bit of fun and everything, but then sometimes staying in one position can be, again, it gets really stiff and really painful and then I can’t move. So then sometimes if I’m say on top, I can’t get off and I’m just there.

Katy: It’s just stuck. Well, no, because that’s the thing. I guess the only answer is missionary, but who wants to do that for the rest of their lives?

Debbie: Well, that is mainly me because I can move my legs a little bit then, but he probably thinks, you know, it’s completely boring for us. But that’s just what it is really. But for you, is there any different?

Katy: I guess because I guess the biggest thing for me was the fact that my wrists were so sore. So certain positions, it means you don’t really want to go in them because you can’t physically do it. And it’s tricky, isn’t it? Because I guess I’d had a life before where I could do before, I then couldn’t do.

And we’d been together for four years when I was diagnosed. So it was, you know, it’s a tricky conversation of, you know, when to, I guess, put in those kind of boundaries of what you can and can’t do. That’s quite a tricky, when do you do that? How do you do that? How do you approach that conversation? And also, it’s the fact that one day you can, but that maybe the next day you can’t.

So putting boundaries in place of what you can and can’t do, I think is a really tricky topic. And something that’s really hard to actually explain, because you might be midway through something and go, Nope, can’t do that. Sorry, off. That’s it.

Debbie: Yeah, I think there has been times for me and it’s just been, you know, so painful. But I know there has been a lot of research out there saying actually, you know, pain can reduce if you have sex, you know.

But I think, again, that is different for men and women. I think it can take longer for women to kind of have that, the endorphins to kind of properly kick in to reduce the pain.

Katy: So, there is the other factor that sometimes, I think this is the case for rheumatoid arthritis, I’m not sure about other inflammatory arthritis conditions, but you kind of become drier. And that is, I think, everywhere. So that, yes, obviously, there’s things you can buy.

But you know, there are those sorts of things.

Debbie: And I suppose, because also medications can cause probably things like that as well, that again, don’t ever get mentioned. And when I was on one of my different medications, it made me feel so nauseous all the time, that it was actually, I didn’t want to do it because I just felt sick.

And I just thought, even just the thought of it just made me feel really, really ill. And I just, again, it’s kind of the impact, this indirect impact that it has on our lives and obviously, you know, our relationships as well. But trying to get that across can be really quite hard.

And then it’s the issue of fatigue. Yeah. You know, every person probably has ever used the excuse too tired.

Katy: Headache. Yeah.

Debbie: But it’s not tiredness, it’s just pure exhaustion. And even just thinking about it, and it just, I just can’t be bothered. It’s just, I just cannot be bothered just because it’s just, I’m just too knackered, really. Do you find that with fatigue?

Katy: Yes, no, definitely. I mean, I don’t have as much fatigue these days as I had at the start. But definitely, the fatigue was a big issue for me, probably for the first three to five years. So, it’s really, really hard.

And I think a lot of this also comes back to kind of viewing whether we view this through the lens of inflammatory arthritis, but also some of those day-to-day issues that everybody comes with, and how, you know, you can work out the difference.

Debbie: Yeah, you know, because I suppose I’ve had this all my life, I know what is down to my inflammatory arthritis and down to just kind of also just being a mum. You know, you have, I had, you know, young kids, that kind of, that’s a proper down on your sex life, that really is.

It is hard, I think. And then there’s also, for me, sometimes I, you know, I do want to go and put on some, say, nice underwear or something for him. I can’t get the bloody things on, because my hands are so, how, how?

Katy: Any clothes designers out there, can you make a decent bra that doesn’t have hooks and eyes?

Debbie: Yeah, even if they say do it at the front, it’s just like, that makes no odds to me at all. And like, none of them are sexy at all, like just crop tops and things like that. So, I just wear like a sports bra every day. And it’s this kind of, that’s just me, really, I think.

Katy: But don’t you think anyway, partners should love you for who you are, not what wrapping you come in. How cheesy was that?

*Music break*

Debbie: So, you mentioned boundaries, and I think this is really important for us to talk about, because do you think it’s actually better for your intimacy to have those clear boundaries? And do you have them?

Katy: 100%. I completely think having a diagnosis of inflammatory arthritis has meant you have to be a lot clearer on your boundaries. And it forces you as a couple to have proper conversation, not, you know, proper conversations about exactly when yes is yes, no is no. Because otherwise, you know, if you’re really not feeling up to it, there’s no point in trying to persuade somebody, because it will just at the end of the day, make them feel a hell of a lot worse. And when that act is essentially meant to make them feel better.

So, you just need to make sure that’s all clear and set out. It’s an uncomfortable conversation. And it doesn’t need to be one conversation, it just needs to be something that you do sporadically.

And throughout your time, so you’re both sort of learning exactly how that works.

Debbie: How do you approach those conversations?

Katy: I’m very tricky. I am terrible. And I think that’s why I said it probably comes out of a couple of conversations. And it possibly comes out of maybe not listening to your own thoughts and feelings, but then maybe saying afterwards, oh, that actually probably wasn’t a good idea because of X, Y and Z and the pain that that’s come around that. And I guess it’s hard enough, it’s really hard to feel kind of sexy as well.

When you’re fatigued, you’re in pain, you’ve got swollen joints, you can’t really move or walk. I mean, you can’t exactly do a lap dance when you’re in an absolute arthritis flare. It’s just absolutely awful.

Debbie: So how do you think we can feel sexy?

Katy: Amazing question. And really hard, isn’t it? And I think actually, as I’ve got older, I think I’ve appreciated my own body more. My body looks a lot different to what it did 15 years ago. But I think I’m more comfortable in my body than I was when in inverted commas, my body potentially looked better. But I think it’s all about being comfortable with yourself. And everybody says you can’t love somebody else unless you love yourself.

So, you’ve got to learn to love yourself, understand your boundaries, and be really kind of confident in terms of what the person you are is today, irrespective of what the person you were 20 years ago, which is hard, right?

Debbie: Oh, yeah, completely. I’m not confident. I may sound confident, but I’m really not at all, especially in my body. And I can talk about other things, but I always try to take myself out that conversation. So, I find it really, really hard to start these conversations, even though I have been with my husband for 25 years. And he does love me for who I am. But it’s still the back of that mind having those previous rejections. And it’s just kind of like, I’m different now. And obviously, my arthritis has been on and off, especially my eyes as well.

And I always question, why the hell are you with me? Medication has made me look different, make me feel different. Why would you want to be with me? Again, that’s getting back to I don’t want to be a burden on anyone. So, it’s tough.

Katy: Debbie, I don’t think you’re a burden on anybody, because the amount of time I’ve known you, you’re such an amazing human being. I love you, Debbie.

Debbie: I might cry in a minute. But yeah, no, I don’t.

Katy: So just going back to that, and the sort of, I guess, your experiences. I don’t know if you talk to your daughter about your experiences and how she can get through these types of discussions. So how can we help children who are living with IA and children going into their adolescent years, understand what they need to do?

Debbie: Well, I think this is, again, really good. And obviously, having my daughter with it, it’s kind of does history repeat itself? And she’s been with her boyfriend now for a year. And I did ask her, and I was like, did you approach this? She goes, well, I think so, but they work together. So, I think he then picked up that she has inflammatory arthritis. And he even does her injections for her. And she was just like, well, again, as you said, this is me, love me for who I am, or there’s a door. And she’s so good with her boundaries and everything, which is amazing. And I think that that’s great. And then, but I think also, society is slightly changed.

Because if you think when we grew up in the 80s and 90s, could you imagine Love Island or anything like that being on telly then? And it is now. And women do have that confidence, like walking around in bikinis. I hate walking around in bikinis,

Katy: but I’ve just got back to bikinis. I’ve kind of, you know, I’ve got into like the fuck it land. If I don’t wear one now, when will I?

Debbie: I wear like tankinis because they cover, they look like, yeah, they look like swimming costumes and that. But yeah, I just think, you know, if I’m looking back now, and kind of when you could tell me, you know, as a child, that actually you would end up getting married and you would have two kids who adore you and, you know, you have a great family life.

It would be just be confident in yourself. Don’t end up like me, but do have confidence in yourself.

Katy: No, be more Debbie. I think be more Debbie.

Debbie: Shall we get that trending? Be more Debbie. But if you do get rejections from people and blokes and, or whoever you like, just, it was meant to be, they weren’t your person. So just kind of go, fine. Do you know what? I can do better. And you will sort of thing.

So I think that is what we can tell listeners and, you know, any young people and also parents of a child that, you know, may have just got diagnosed and that actually just give them the confidence, empower them to embrace everything in life. And it will give them confidence to be exactly who they are. And they will be loved for who they are.

Love that. And so what do we want listeners to take from this? That you can, you can still have relationships and you can have a sex life as long as you are clear on what is comfortable for you. Make sure that you are talking to your partner and just being open and just having that trust with them. And just realizing, you know, you’re not a burden, be confident about who you are and you will be loved for who you are. I think that is. Anything else from you there, Katy?

Katy: No, I think I completely agree. I just think it’s about kind of owning yourself and being your own person. And if people don’t like it, well, they can go away.

Debbie: Yeah, completely. So happy Valentine’s Day, everyone. If you’re listening on Valentine’s Day, it came out today. But we really do want to thank you so much for listening.

Please do leave a review and rating from wherever you get the podcast from. Don’t forget also to sign up to our newsletter at inflammatoryarthritis.org, where you’ll be the first to know about any upcoming episodes, any research opportunities and any IA news. Follow us on social media. We are on Instagram, Facebook, Blue Sky and LinkedIn. But until next week, it’s goodbye.

Katy: Goodbye.

Episode 6 Relationships, Sex and IA

“Welcome to #fuckitland (you’ll need to listen to the episode to have any idea what we mean by this!

Debbie and Katy come out of their comfort zones and dive into an often-overlooked topic: relationships and sex while living with inflammatory arthritis and sex.

They take a deep dive to explore the challenges of relationships and intimacy for those living with inflammatory arthritis. Discuss the physical limitations that affect sex, such as pain, stiffness, fatigue, and medication side effects, and emphasise the importance of open communication and setting boundaries with partners.

They also highlight the emotional impact of the condition, including self-confidence struggles and fears of being a burden. Debbie shares her experiences navigating relationships with arthritis, while also reflecting on how societal attitudes have changed over time.

They also speak openly about their experiences with the condition and emphasize that those affected are not alone. Katy shares her recent hand therapy session, where she learned about pain management and the importance of mobility, strength, and control. Debbie, on the other hand, talks about a difficult weekend due to an arthritis flare-up that even disrupted her plans with her husband. She also discusses the challenges of parenting, especially during her children’s stressful exam period, and her new role as a trustee for an art therapy charity.

The key takeaway is that people with inflammatory arthritis can still have fulfilling relationships and sex lives by embracing self-confidence, being clear about their needs, and surrounding themselves with supportive partners.

Resources & Links:

• Visit inflammatoryarthritis.org for more information and resources.
• Follow us on Instagram, Facebook, Blue Sky, and LinkedIn for updates and community support.

If you enjoyed this episode, please leave a review and subscribe to our newsletter to stay updated on upcoming episodes and research opportunities.

🎧 Listen now and let’s keep the conversation going!

Disclaimer: The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

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