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Relationships, Intimacy and Sex with Arthritis

September 9, 2020
79 min read
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Have you ever wondered how rheumatoid arthritis can affect your relationships and sex life? In this episode of the Arthritis Life podcast, five young women sit down and discuss their best advice for having satisfying intimate relationships. 

Navigating intimate relationships while managing a chronic illness can be tricky – how and when do you disclose your disability?  How do you experiment with sexual positions without “ruining the mood?” Is it possible to communicate with your partner in a way that’s respectful and empowering?

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Episode at a glance:

In this episode, five panelists share their best advice for *all* aspects of romantic and intimate relationships, including: 

  • Communication tips for all stages of relationships, from first dates to marriage
  • How to workaround fatigue that makes it hard to get “in the mood”
  • Positions that work for wrist or hip pain
  • Lubes that work for dryness
  • Workarounds for jaw pain during oral sex
  • How do disabilities or health conditions contribute to power dynamics in relationships
  • The importance of emotional connections
  • The importance of self-love and respect
  • Why STD prevention and protection are particularly important for people on immunosuppressive medications
  • Panelists’ best advice for newly diagnosed patients who might be worried about how their condition will affect their sex life and relationships

*Trigger warning – in minutes 30-40 there are descriptions of pressuring and coercion into sex without protection

**This episode discusses adult topics (sex) and includes explicit language.

Minute by Minute breakdown:

  • 02:00 – Introduction to panelists: Chloe, Jo, Ali, Paulina & Cheryl.
  • 3:20 – (Chloe) How juvenile arthritis affected her first relationship as a 16 year old, and how her new (current) relationship is better .
  • 07:55 – (Jo) How Jo learned the importance of communication when both partners have a chronic illness.
  • 11:42 – (Ali) How arthritis affected her intimate relationships and how she learned to experiment with positions and communicate about what worked for her. How pain and fatigue can lead to vicious cycles. 
  • 16:20 – (Paulina) How arthritis affected Paulina’s relationships, from wrist and jaw pain to detailed communication and emotional connection with her partner. 
  • 23:00 – (Cheryl) Reflection on power dynamics within romantic relationships.
  • 24:25 – (Chloe) How strong emotional connections affect vaginal lubrication.
  • 25:22 – (Chloe) How jaw pain affects the experience of giving oral sex, and potential workarounds. Also how fatigue leads to lack of energy for activity including sex.
  • 33:00 – (Cheryl) Everyone has their own physical, mental or emotional challenges with sex. Also, the importance of STD testing for partners due to immunosuppression from inflammatory or autoimmune forms of arthritis. Experiences feeling pressured in relationships.
  • 36:00 – (Chloe) Experiences feeling pressured in relationships. 
  • 37:45 – (Jo) Jo’s tips for positions and lubricants.
  • 39:00– (Ali) Being cautious when dating, how scheduling can help with fatigue, tips for positions and communication. 
  • 43:14 – (Paulina) Communication is crucial! Your partner is not a mind reader. Tips for lubricants when you have sensitive skin. Tips for positioning.
  • 51:00– (Ali) Best adult toys to use for arthritis
  • 53:00- (Chloe) Communication & practicing the sex positions that work best for you (including spooning).
  • 55:00 – (Cheryl) How sex is an “Activity of daily living” according to occupational therapy and how an OT can help with sexual healthy, intimacy, positions and more.  Reflection on sex education now versus in the early 1990s.
  • 58:30 – (Paulina) Tips to increase your sex drive and address your own pleasure,
  • 1:01:00 – (Chloe) Advice for anyone recently diagnosed who has concerns about relationships and sex life
  • 1:04:00 (Jo) – Final thoughts and advice, disclosing when you are dating online
  • 1:06:00 (Ali) – Final thoughts – don’t feel pressured, make sure your partner is educated
  • 1:07:00 (Paulina) – Final thoughts and advice – communication. 

Full bios for panelists: 

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more comprehensive, accessible, and (dare she say) FUN patient education and self-management resources! 

Chloe Umpleby is a 21 master’s student and I was born with Juvenile Idiopathic Arthritis, officially diagnosed when she was 18 months old. She runs @_chronically_happy_ with Paulina and runs her own Etsy shop called SpoonfulOfChronic which sells chronic illness themed products to advocate and represent spoonies!

Jo Mistreanu is a 22 year old living in the UK, studying for a Master in Infection and Immunity. In her spare time she loves spending time in the kitchen and connecting with fellow spoonies :). 

Paulina Burzynska has been a 𝑅ℎ𝑒𝑢𝑚𝑎𝑡𝑜𝑖𝑑 𝐴𝑟𝑡ℎ𝑟𝑖𝑡𝑖𝑠 𝑊𝑎𝑟𝑟𝑖𝑜𝑟 since the age of 18 now also a Chronically Friendly Yoga Teacher aspiring to raise awareness on life with RA.

Full episode transcript:

Transcript:

Cheryl Crow (00:00:00):

Hi, everybody. I am so excited for today’s episode. It is all about how to navigate relationships, intimacy, and sex while managing rheumatoid arthritis. I have four different guests today, and they’re all sharing their personal stories and best advice for you all. So before we get started, I wanted to give a couple warnings. So this episode definitely has explicit language and a lot of discussions about sex. So if you know, that’s something that you have a sensitive audience listening to, you know, be aware of that also as a trigger warning, there are some descriptions of pressuring and potentially coercion into sex without protection in this episode. So that’s around between minutes 30 and 40. But overall, this episode is really a great testament to how to advocate for yourself in a relationship, how to have a great, wonderful, intimate relationship while managing arthritis and on how to not settle for anything less than what do you deserve. So I can’t wait to get started.

Cheryl Crow (00:01:06):

Hi, my name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom teacher and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life. With arthritis, everything from kitchen, life hacks, to how to respond. When people say you don’t look sick, stress work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness, no topic will be off limits here. I’ll also talk to other patient and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there ready to figure out how to manage your arthritis life let’s get started.

Cheryl Crow (00:01:54):

I love everyone to just introduce yourself and share. What’s your name, your diagnosis, how long you’ve had it and also age if you don’t mind share.

Cloe (00:02:03):

So my name’s Chloe I’m 21 and my diagnosis is juvenile apathic arthritis and I’ve had it ever since I was a baby. So I was born with it and I was diagnosed when I was 18 months old.

Cheryl Crow (00:02:14):

Great. How about Jo? You wanna go next?

Jo (00:02:17):

Yeah, sure. So my name’s Jo, I’m 22. I’ve had rheumatoid arthritis for almost three years now and I’m a student.

Cheryl Crow (00:02:26):

Nice. Okay. How about Ali?

Ali (00:02:30):

Yep. My name is Ali. I have rheumatoid arthritis and really bad cause, I am 27 years old and I got diagnosed when I was 15.

Cheryl Crow (00:02:41):

And Paulina.

Paulina (00:02:43):

Hey guys, I’m Paulina. And I was diagnosed with rheumatoid arthritis in 2014 when I was 18. So I’ve had it for like five, six years.

Cheryl Crow (00:02:52):

And I’m your moderator today? I’m Cheryl. I’m 38 and I’ve had rheumatoid arthritis for 17 years since I was 21. So today we’re, as I mentioned earlier, we’re going to be talking about relationships, intimacy, and sex while managing something like chronic illness slash arthritis specifically. So I’d love to hear from each of you, how has your condition affected your romance relationships, Chloe? You wanna go first?

Cloe (00:03:23):

Yeah, so I would probably say that like growing up, I didn’t really have a lot of like, you know, like the teen relationship didn’t really have many of those because I feel like my arthritis caused me to like close off. Like I got the, the typical, like you’re too young to have arthritis and that this and that. So it really like closed me off. So I didn’t really open myself up to a lot of people. So I think that kind of put those barriers for me to even have like those typical school type relationships. So my first pro relationship, I was 16 and it lasted for three years. So it was a long time, you know, and I was basically a kid really, when I think about it. And I would say that was massively affected by my illness. And I didn’t really realize it until like afterwards.

Cloe (00:04:05):

So he would never like understand what I was kind of feeling. He would just assume that I could do everything normally like a normal person to him. I had no struggles at all, which obviously is the complete opposite. You know, you guys all know, like it can really have a massive of impact on your life. And that stopped me from, you know, opening up to him, which eventually obviously caused us to really drift apart, especially when I was 18 and I moved to uni and I met a lot of people who were much more understanding and I could talk to a, to my problems about, and then he would say, well, you don’t talk to me anymore. You, you know, you drifted what you’re drifting away from me. And I’m like, well, you don’t really make me feel like I can talk to you. And obviously my arthritis affected my mental health.

Cloe (00:04:46):

So I was, and then I got diagnosed with anxiety and then he wasn’t really open about that either. So it all was kind of like snowballed. And I had a point where I was talking about uni and stuff like said that you do all while you’re at uni. And it really, really hurt because at the, the time I was doing my degree, I had a pretty much a part. I had a part-time job, but it was basically a full-time job. So I was working like 25 hours, you know, every like two weeks, which alongside a degree is quite a lot. Really? Yeah. Especially you got a chronic illness. So I was like, hang on a minute. What? So it just like really undermined me. And then he said, he’s called me, me lazy in the past as well. Because obviously when I’m not doing anything at that time, I did like to rest because it’s the only time I got to rest. And he would just think that I didn’t need it. He was just like, you just don’t do anything when you are at home. I’m like, well, because when I’m at uni, I’m constantly busy and my body just wants to relax. So he never understood that either. So that’s why that relationship ended.

Cheryl Crow (00:05:45):

What, what do you think contributed to that? Like the fact that initially, do you think he was in denial about the seriousness of arthritis? Or do you think, like there was some other reason for him not to engage with the fact that you actually have this? I’m just curious.

Cloe (00:05:59):

I honestly don’t know. I think probably the first one, I think probably he was, you know, in denial about how serious it can be. And I feel like also at the time I was very closed off from my past experience. So I don’t think I ever truly opened up about how much I was struggling, but him also saying the things he said made it even less likely for me to open up. So it was kind of that as well. And I think it was just total miseducation, you know? And that’s why I do these things that I do now because to stop other people going through the same thing as me. But now I do, I have a B a new boyfriend now, and he’s, he’s brilliant. He, he did the arthritis support panel. Oh. So that just showed that, that in itself just shows how supportive he is and he wants to do everything he can to help. So, and it’s wonderful. He’s honestly, he’s amazing. So I’m very lucky to him. So I’ve literally, you know, I’m on, I’m in a better place now in terms of like my relationships and stuff,

Cheryl Crow (00:06:53):

That’s great. And you know, for better or for worse sometimes to know you do want, you have to experience what you don’t want. Right. Makes you kind of on the lookout for that. Like, oh no, I’m not gonna do that again. Right.

Cloe (00:07:05):

Absolutely. And I feel like that even though I say like, oh, why did I waste three years of my life? And like, it’s not entirely a waste because I learned who I am. And I literally, I learned my worth. I was like, I am worth so much more than this. I are better than this. And that’s when I, you know, I left and then I had a couple of months out, you know, just doing my own thing on my own. And I actually, when I came, went back to uni, so I’ve obviously just done my last year. And that’s when I met my current partner. I wasn’t planning on, you know, a new relationship. I was like, I’ll just, you know, do whatever. But then he came along and I, I always say things the best things happen when you least expect it. So,

Cheryl Crow (00:07:39):

Yeah. That’s, that’s wonderful. Oh, thank you so much. I love that experience led you to your current good one. So yeah, I think that’s some important to remember maybe if, if someone’s listening, who’s in that 16 year old 17 year old stage. Yeah.

Cloe (00:07:53):

So, absolutely.

Cheryl Crow (00:07:54):

That’s wonderful.

Jo (00:07:56):

So I came out of my last really relationship just before lockdown. So, and I was together with him for just over a year and he was my first real boyfriend. And I think what made it easier for me was that he also had a chronic illness. So in a way he kind of knew what was going through, but it was, I B D it wasn’t arthritis related. So as much as he could empathize, he couldn’t really know how and what I was feeling, but no, like he was really supportive. He was great. He always encouraged me to relax and stuff, which is why our relationship ended for different reasons. Yeah. So I don’t think anyone has ever told me, like, you know, how this could affect my sex and I’m a very sex exploitive person, but it just never occurred to me like how it could impact my sex life.

Jo (00:08:47):

And it was the first time, the first night we spent together, like I experienced some troubles with lubrication and stuff. And like, it, it never happened to me in the past. And I was obviously quite embarrassed and I didn’t know what was going, didn’t have any Lu on hand, but then the next day, I mean, I don’t know if I was necessarily worried. It was just, it was something new that had happened. So I looked it up and I actually saw it on versus arthritis website that is actually quite common. And that really put my mind at ease. And now lube is my best friend, But yeah, I think that, that’s my story.

Cheryl Crow (00:09:28):

Yeah. No, thank you. And I think that definitely having dryness in general, like whether it’s, you know, I think draw eyes, people are aware of that. Like your dry eyes can be directly caused by your rheumatoid arthritis, but it it’s all dryness, even if you don’t have SHOs, you can have yeah. Vaginal dryness and other issues. So I think that’s a really good, like practical tip to always kind of be prepared with all, with all sorts of Lu or anything else that can help you with your lubrication. And I think, yeah, I think one of the things that I think is hard is that when you’re especially beginning, like you were saying, it was the first time when you’re just starting developing that intimacy with someone, it is kind of awkward some of the time. So it can, you know, adding that layer of, you know, pain or other side effects from your condition can just make that more, more awkward. But is there anything else you wanted to share in terms of, you know, how you, it sounds like you guys both had chronic illnesses, did you ever have to like work on your communication around like what symptoms you were experiencing and how that affected things like, oh, I’m feeling fatigued today. I’m not really in the mood or something like that. Or were you guys pretty clear in your communication?

Jo (00:10:43):

I think the difference between us was that I had quite a lot of flares while we were in a relationship. Whereas he was in remission. I was very happy for him. And like, he didn’t have any symptoms and least he, he hasn’t told me about it, but we had quite open relationship. And whenever I was feeling unwell, I knew I would, I would tell him, you know, I, I’m not off it. I am tired. You know, my joints are creaky and like he would understand. Yeah,

Cheryl Crow (00:11:15):

That’s really, that’s really key. Cause I think a lot of people feel embarrassed or they feel like, oh my gosh, I’m saying it again. Like, I don’t wanna, I don’t wanna use that as like an excuse, even though it’s totally a valid excuse. So it sounds like you guys had really good, like you said, really open communication. What about alley? How is your condition both, you know, RA and Casar affected your relationship?

Ali (00:11:40):

Yeah. So I’m very happy that we’re talking about this. I’m an open book and this topic has never really been discussed and I’ve never found resources for it. So I’m very, very happy about this. And you guys can ask me anything again, I’m an open book and I think sex is very important, especially with arthritis. So a little backstory with my sex life, I guess you could say, but growing up, I was growing up. I’m talking about like from teenager to college, like into my early twenties. Yeah. I was very active with sex. I loved sex. I didn’t have any problems with, I was very active. It was regular. I’ve had, I guess, four serious boyfriends and I wasn’t one to just like sleep around, but I had the four serious boyfriends and sex was never a problem with us. It was completely normal. But however, my story with arthritis is a bit different when I got diagnosed at the age of 15, I went through it, but I had surgery.

Ali (00:12:32):

And then I immediately went into remission with physical therapy and I was on medical remission at two. Like I didn’t have any medicine. I was just in remission from the age of 15 to 22. So during that time, which you know, was my like prime, my prime sex years, I was completely okay. And sex never was a problem. It was regular. It was fine. My boyfriends, it was great. I never really needed Lu patient or any other thing. Like it was completely fine. However, when I hit 22 and my arthritis came back and it was very aggressive, that’s when it changed. So then I was still quite regular in the beginning of that, but I was finding it very difficult to get into certain positions due to my knee. So if we’re gonna being completely honest here, I was getting and kind of upset because I’m not, I’m not a bottom person.

Ali (00:13:17):

So, and, and you know, being on top, you can’t really support yourself with your knee. And so that was making me really sad because if we’re being super honest, I can’t, you know, hit that climax when I’m on, like when I’m laying flat. So then I started to get really like depressed because I’m like, I, I can’t hit that. What’s the point of doing this, if both aren’t gonna finish, you know? And so at this time I was with my current boyfriend. So starting off with my current boyfriend, I was still okay. And so sex was completely fine and regular with us, but once it hit, he understood because my arthritis came back very aggressively and I couldn’t get into the positions. So he understood that. But after being medicated, I was starting of get a little bit better. I could get into those positions, but then it was really about the fatigue.

Ali (00:14:00):

So like the fatigue is what really would stop me. And I really was never in the mood. I would have to think about it as if it was a job. I was like, all right, well then I’m gonna have to get into these positions, but my knee is hurting. My chest is hurting. My elbows hurting. I don’t wanna do this. I I’m really tired. Like I just, I don’t want to. And then on top of the fatigue, what Joe said was like the lubrication, I was completely dry. And I think it’s because I wasn’t in the mood. I was never in the mood. I was tired. I didn’t wanna do it. And then on top of it, it’s dry. So then it hurts. So then I’m like, it hurts. I’m already in pain. I don’t want to add more, see this, however, on the days that I would just be like, I gotta do it.

Ali (00:14:41):

So we’re gonna be very real here while it’s happening. And I’ve gotten past the lubrication in the dry cuz what we do now is, and we’ll get to the tips and tricks soon, but we use a lot of loops. So when it starts to get okay and we get comfortable, I’m thinking, why do I never wanna do this? Why, why do I say no to this? Like this is helpful. And then I read an article, I think maybe Cheryl was on the arthritis foundation. I’m not sure but saying that sex is actually really, really good for people with arthritis. It really is great for us. And I it’s kind of like fitness. Like you think I can’t work out because I have arthritis. I’m in pain. It’s like that with sex. Like I can’t have sex, it’s gonna cause pain. But then while you’re doing it, you’re like, why did I stop this? So anyway, in conclusion with me, it was mostly about the fatigue and the dryness and the being in pain and not wanting to add pain. My current boyfriend at the time complete understands, but we’ll get to the tips in church soon on how him and I deal with that. But that was my story.

Cheryl Crow (00:15:37):

Oh, that’s so, so much to unpack there. But I think you really touched on all the different elements that can add into challenges with sex life. It’s the fatigue. So you don’t have the energy to do it then pain, which makes it immediately not fun in your mind. And then the dryness and then the, but then there’s the significant emotional thing where you know, that it’s something that makes your partner happy and you love them. And so you wanna make them happy and, but it comes at a cost to you. And so I’m glad that you guys have found ways to, to work or around that. But yeah, I really appreciate your, your openness about that Paulina, you look like you were just like ready to chime in. Did you want to chime in now?

Paulina (00:16:21):

So I mean, O M G like, that’s my first reaction because first of all, I’m learning here. Like, like everyone just mentioned, there’s no materials out that actually give you like an insight view onto what’s happening or what you can experience or the different things you could have, like problems with. And about the lubrication. Like I have problems with that ever since I started my medication again and I never, I don’t know, first of all, I never thought that it could be related to RA. And secondly, I never thought of even Googling that because I’ve never heard it mention that it was like, how can that be related? Like this is, this has nothing to do with it. So it didn’t even cross my mind to research about this. But yeah. So now let’s go to answering the question of how, how it affected my relationship, my romantic relationship.

Paulina (00:17:20):

So before I was diagnosed very similar to Allie, I was fine. So before the age of 18, it was just like, like nothing like, yeah, it was just normal sort of sex life. And then when I was diagnosed for the six months of being on medication, I actually can’t even say if I remember like how I was, because it was such a short period of time that I was on my medication. And then I sort of went into, let’s say my forced remission, that I really don’t recommend to anyone for two years. So what I can actually really talk about is the experience that I’ve had for the past two and a half years with my current partner, because that’s when I’ve started noticing, let’s say more flare ups, more pains. I had these different medications, different dosages and yeah, different pains. And let’s say like that at first it was very strange to start having like these different pains or different experiences.

Paulina (00:18:22):

And I I’m like, I think like every one of us here were very straight to the point and very like an open book. So I’m gonna be like that too. And there are certain things that started becoming really difficult for me to do for longer periods of time. My jaw, for example, like that’s one that I learned from a previous panel. Like, I didn’t know this was arthritis related. However, now I know that actually my jaw hearts very quickly. And then another thing is like, my wrists are the things that are mostly affected. So we had to figure out ways of how to like, not use my wrist in certain things that require mostly your wrists. So the way that it affected our relationship, I think it would just really opened up like a whole new level of communication, like to the extreme detail of like, no, this centimeter of this position just doesn’t work and we have to change it by five centimeters and then it’s gonna be fine or the positioning of the body or whatever.

Paulina (00:19:24):

And like I said, like, I mean, yeah, we’ll get to the tips and, and tricks later on, but there are things that we started experimenting with because I can’t use my wrists. So like we, yeah, anyways, we’ll get into that later. So I think it created in, in a sense, when we talk about all of the other things that you guys spoke about, like the fatigue, like that’s a huge one and I’m a very empathetic person. So I always want to please, like in general, like this is not even sex related, but like in general I’m such a giver. And I think most of us actually are for some reason. So being in this like empathetic, emotional state and emotional feelings all the time, and then like Ali said, you feel fatigued and you’re in pain. You don’t wanna do it, but you also want to do it because you know, this is gonna make your partner happy, but while you’re doing it, or even when you get in to do it, and it feels like a chore, like a task, and that’s just such a horrible feeling to have, because I mean, sex is not about that.

Paulina (00:20:28):

Sex is like about pleasure. It’s about fun. It’s about, you know, that exchange of, of emotions and that experience. So, yeah, so it was really emotionally draining for me, I think in the beginning, especially, and I, to be honest, I’m not gonna lie. It still is. Sometimes when I don’t feel like when I don’t share my emotions fully, like when I just hold it in, I’m like, okay, no, I just wanna do it. And I wanna pretend that, you know, I’m into it that I want to, you know, cuz it changes the vibe. It changes the vibe. And I feel that when I’m in that state, it’s felt by both parties. So even though I know this, I still do it. I don’t share my emotions. I don’t say that I’m, I’m too fatigued. And the usual let’s say excuses, but for us is they’re not even excuses.

Paulina (00:21:13):

They’re like legit things we experience. I feel like when I don’t share these things, the whole experience is just not as great. And then when you do talk about these things, you can find ways to compromise or you can find to make it happen so that both parties are happy. So that, yeah. So that’s like talking about the fatigue stuff and about the emotional connection with it. And then on top of that goes the whole modification. Like, I mean we talk about tools for the kitchen. We talk about tools. Yeah. Like our life E on how to live our day to day life. But I’m sorry. Sex also is sort of like day to day life and

Cheryl Crow (00:21:54):

Oh yeah.

Paulina (00:21:55):

Yeah. So the, there are things that we have to modify or like even the whole knees or like your wrists or, or things like that. And when you are insert in positions and you are literally relying on these joints and then it’s like, how can I get my pleasure? Because this is the place that I get my most pleasure from, but actually not be in pain at the same time, because then the pleasure is not gonna come cuz it’s like, you know, a brain and then the lubrication comes into play too, cuz you’re not mentally in it. Cuz you’re constantly either worried about protecting your joints or you’re worried about pleasing the other partner or you’re worried about acting normal so that you are not like, you know, Pitti on, let’s say

Cheryl Crow (00:22:42):

That just really hits the nail on the head again, you guys are all hitting the nail on the head perfectly where it’s like, it is not just, oh, sometimes I think the sexual education, when it is done, it’s like just to experiment with positions and find one that works. It’s like, it’s not just the physical, the physical effects, the emotional, the emotional effects, the physi, you know, back and forth relationships have power dynamics. Whether we like to admit it or not. You know, it’s kind of, I like to think of like my romantic, there’s always kinda like a Seesaw, you know, it’s kinda like sometimes one person’s more into it in general than the other. And you know, I’m married now. So it’s a little bit less of a up and down Seesaw, but in, you know, there’s always kind of like a negotiation. So anyway, I I’m sorry if I cut you off, I was just really excited about what you’re talking about. Was there anything else you wanted to add?

Paulina (00:23:28):

Now? The thing that came into my mind while everyone was talking is how my hormones, like for example, when my period is getting closer and my hormones are like playing up and they’re like going crazy and having a party, that’s when my sex drive increases and it’s like, then it’s, it’s this feeling of like, oh my God, I actually need my hormones to have a party for me to have this normal sex drive that let’s say in the past I used to just normally have, cuz I was also a very like, I like sex and people like sex. So you want to have that drive because it makes the whole exp so much better. And now it made me think like that’s crazy. I actually need my hormones to have a party for me to have like a full on amazing experience in terms of like mental, emotional and physical connection of everything joined together.

Cheryl Crow (00:24:20):

So I know Chloe, you wanted to add a little bit more to your story, but would you like to

Cloe (00:24:25):

Yeah cuz I, at first I thought I didn’t, we were just talking about relationships and then no one else started talking about sex. I was like, I wanna talk about sex. Yeah.

Cheryl Crow (00:24:31):

I

Cloe (00:24:32):

About experience.

Cheryl Crow (00:24:33):

Oh good. Go for it.

Cloe (00:24:35):

I chime in no, because I just wanna say like literally what she was just saying and what Paul said, like literally when you guys were all talking, I was like, oh my God, me too, everything. It’s honestly insane. And I wish I’d known this of years ago when I actually started having sex cuz I started having sex when I was just before 10 17. But what was interesting for me is at first I had the same problem with like the vaginal dryness that you guys were all having with my last long term boyfriend. I always needed lube all the time. And I just thought that’s just something that, you know, sometimes that happens and I didn’t have any idea that it could be related to my arthritis, but now with my current boyfriend, I’m still on the same medication, but it’s switched. Like I don’t need it at all now.

Cloe (00:25:21):

And I think for me, what it is is because me and my current partner, such a deep understanding with each other and he so understanding and I feel like I can communicate all my feelings to him and I feel so intimately connected to him that I, I dunno. I just, I don’t know. I think that’s the reason, but it could just be a spontaneous thing. I’m not sure, but that’s kind of what my experience of like the dryness is being for me. And I feel like for me, it’s like, it’s probably been quite mental. So like before I felt really disconnected from like my partner. So I kind of just dried out like the desert, I guess.

Cheryl Crow (00:25:57):

No, that I think there’s studies on that. Yeah. The emotional part can lead to better lubrication. That, that makes perfect sense to me. I,

Cloe (00:26:07):

And also like the jaw thing happens to me. I remember me and Paulina were having a conversation about it on like FaceTime. And I was like, oh my God, I get that too. And it was this big, massive light bulb moment because before you know my, when my current boyfriend, I like, I love giving him oral. Like I enjoy it because he enjoys it. I enjoy it. It’s great. But I wish I could do it longer, but I can’t because my jaw just fatigues so quickly and I get it like right here. Yeah. Like right here. And it’s, it makes me, it does make me sad. It’s like, like I think, oh, you guys said it at one point. Like it does make me sad because I want to be able to make my partner feel good. And also it was cuz I enjoy it too. So I’m like, I wanna do it because I enjoy it and he enjoys it. So why not? But then I’m like, but I can’t.

Cheryl Crow (00:26:54):

Have you ever tried alternating between like this is gonna this again, we’re gonna get really graphic here. So one thing that I’ve done is like all to between the guy and I’m straight. So I’m with a man, but not to say everyone is, I’m not assuming everyone’s anyway. So he can kind like if your John needs a break, he can kind of do his hand to keep himself hard and then you can kind of take a little jaw break. Okay. Allie and Paul are nodding have.

Cloe (00:27:22):

Yeah. So done that. Well I’ve like kind of switched to my hand, my wrist and my mouth, like just switching and that’s like, fine. Oh,

Cheryl Crow (00:27:28):

Oh your own hand. Sorry. I’m not willing to do that. Cause I know my hand’s gonna hurt

Cloe (00:27:32):

My wrist is like hurting today. So obviously it would not be possible today, but like when I’m, when it’s like kind of normal, I do switch, but I just, sometimes I just wish I could just be able just to do it. You know what I mean? Also something that happens a lot to me during sex is if I’m on my back and you know, like my partner is like doing things to me or like we actually having sex, like, and I’ve got my legs outwards, my right. I know my lesson rights, my, my right cramps so bad. Like it literally like just locks into place and, and just cramps. And I’m literally like, huh. Like it really, really hurts. And I hate it when it happens because sometimes I, you know, I’ve had to be like, stop, stop, stop. And like, I feel like I’m, you know, being in the moon and it just, I just feel, I, I would say at first I do get, I felt embarrassed now.

Cloe (00:28:22):

I don’t because you know, being with my partner for, you know, almost a year now, so kind of getting used to it. But at first I was like nervous about it and it’s happened before with my previous partner. So when I first started having sex with my new partner, I was like, oh God, what if it happened? What if it happened? And I got myself in like this kind of worry, see, that’s something that happens to me during sex as well. And I feel like as well, I had like a period of time in between like my previous partner and my current partner where I was just single. And I went on a few dates and I was like, I didn’t necessarily like wanna sleep around, but I just kind of was like, I just wanna do what I want. But I feel like the struggles I have sometimes in sex with my illness, it’s kind of stopped me from being completely open to the idea of sleeping around, because there’s nothing wrong with sleeping around.

Cloe (00:29:08):

If you wanna do that, then you should do that because you know, I love sex and I know a lot of people else do as well. So yeah. And then I feel like the problems I could possibly suffer, like within, with a brand new partner, if it’s just gonna be one night stand, it’s just create, it’s just, it’s just awkward. You know? And, and I’m just kind of like, no. So I feel like I’m very much more in terms of sex. I’m very much more like a have sex in a relationship type of way, because I feel like I have to develop that intimate connection first and that communicative experience before like I have sex with someone because I feel I have to have that communication there first. But again, like all you guys said hit the other head with the fatigue as well. Like I love having sex with my boyfriend.

Cloe (00:29:53):

It’s great. We have both have loads of fun. And we were having like sex every single day at one point until I hit a area and I just fled so bad for months and it, and I wanted to have sex, but I just didn’t have the energy. And I was in so much pain and, and he was so understanding. He would never, you know, never like push me up for it or anything, but, and he’d be like, it’s fine. You need to rest, you know, just do that. You know, he’s great. But yeah. And I was like, but I want to. And he is like, no, but you need to rest. And I’m like, but I want to. And he would be like, well, and I feel bad, you know what I mean? And, and he never made me feel bad. It’s just me on the inside feeling like, you know, feeling bad because I want to be able to, to do it. But I just can’t. Cause my body is just like, Nope,

Cheryl Crow (00:30:38):

It’s so, so hard. I mean, something that I try to remind myself in those moments is just that, you know, no one, no one has it perfect. Right? Like there, I mean there are maybe some people in their early twenties who are totally like able bodied and you know, great. But most people have some sort of challenge with, with sex intimacy, whether it’s mental, emotional, you know, physical or their own kind of fears, maybe I’m, I’m not pretty or I’m not worthy, you know? So I try to remember, okay, the ones that I have there around like my physical health, but at least I have, you know, have these other things. But like you said, it’s, it’s an emotional, it’s an emotional thing. And you wanna just be like, I, I don’t know if any of you guys listen to Dan Savage’s Savage love podcast or column.

Cheryl Crow (00:31:20):

The thing that he says a lot is like, gee, you want to be B G, G, G like good giving and game. Like you wanna be, you know, good at it, giving to your partner and then just game to go whenever, hi everybody. I’m interrupting really quickly to let you know that the wait list is now open for the rheumatoid arthritis, roadmap, your guide for a full life with RA. So this is actually you the same program that used to be called the beginner’s guide to life with rheumatoid arthritis. But I updated it with some pretty major changes. And I also changed the name because it’s a really, really useful and powerful program, even for people who aren’t truly beginners. The wait list is available by entering bit dot Le are a roadmap all in lowercase. Or you can click on the link in the show notes for today, or just email me at info, my arthritis, life.net.

Cheryl Crow (00:32:14):

And I can’t wait to share more in the coming weeks. I’m a bit older than you, but so something for me is I got married in my very late twenties. I, or I started dating my husband at like 28. So I had a number of years in, but I didn’t get diagnosed with until I was 21. So I was already sexually active then, but then I got diagnosed and something for me that was, I had a lot of fears around getting an St D because of being on immunosuppressants. So for me, I would, I actually was very proactive in anyone that I dated before and that I wanted to be sexually active with. I would make them get an STD test and show it to me. Has anyone else done that? I’m like, I, I thought I was kind of weird for that, but now I see you guys nodding.

Cloe (00:32:57):

I mean, I, I feel like I’ve been talking for ages. I’m so sorry. OK. But I haven’t like done that so to speak, but I have had the same anxieties. So I have kind of been like, oh. Like I need to be, you know, careful. And I think that’s another reason why I was saying when I had that peer of being single, I didn’t, you know, just sit with whoever, because I was so terrified because I have, you know, like you should, I have anxiety disorder. A lot of it is related to my health and my arthritis, the fact that I was suppressed immune system, the COVID has been wonderful, not COVID terrible for my anxiety. So I have like the same thing. Like I remember, you know, in all my, all people I’ve lept with, I’ve been as proactive as I can be, you know, making them wear protection on making sure I’m on, you know, I’m on protection too.

Cloe (00:33:42):

Not just even with STDs, but also pregnancy as well. Cause pregnancy not, I pregnancy terrifies me because of my arthritis. So I make sure that I’m on contraception too, because I’m just so terrified. I do want to have kids, but there’s still a thought of it is still, is still terrifying. But yeah, definitely. I feel like I do have a lot of more anxieties about STDs than, you know, able body people. Obviously. Now don’t worry about it so much. Cause obviously I’m with a long term partner, remember one time I did have unprotected sex. I know I was very silly and I was myself. Yeah. I was so scared. I was like, oh my God, luckily obviously it was negative. You know, it was fine because it was, it was just the one time. But I was like, oh my God, I’ll never put myself with that again.

Cheryl Crow (00:34:25):

It’s really scary. I remember when I was in my mid twenties, I kept thinking I’m safe if I just, if I do oral. So there was a few partners where it was like oral only no penetration. Cuz I was like, I don’t know if I’m committed enough to you to want to go to that next level. But then they came out with the studies about HPV being oral and I was like, I’ve made a grave mistake. I go, oh no. But something that I talked about when I went to the juvenile arthritis conference, way back in like 2014, they did have the juvenile arthritis conference from the arthritis foundation. They had a, a panel about sex and relationships and something that a lot of people brought up there is that you have to feel confident in yourself to be a able to advocate in those situations.

Cheryl Crow (00:35:03):

And I know I’m talking to four women right now who are, you know, appear to me from what I know of you. Very confident, but like, you know, for me, I, I am very confident, you know, and, but even so I’ve I have felt pressures. I like nice guys. Okay. So I’m very lucky. I’m attracted to people. I know that’s not everyone, but like I have been with the most kind, like I literally have nothing bad to say about in general about how my excess treated me, but I will say, I’ll just say, cuz one of them really pressured me to have sex without a condom. And I eventually did it because we both had clear tests, but I was, I, it was really worried me a lot because even though we had the clear tests, like there, it is still a gray area cuz they still could have something in it, not show up on the test. And so, and I know that the reason I did it was cuz I wanted to kind of keep him and didn’t want and I wanted to make him happy, but it was like, I didn’t feel a hundred percent comfortable with that. So I also,

Cloe (00:36:03):

I just wanted to add when you were saying about, you know, feeling like coerced and like pushed, I kind of felt that too when I had sex unprotected, like I didn’t feel like I could say, hang on a minute. I want you to put a condom on because I said I was on the I’m on the depo injection for contraceptions. I felt like I, I dunno. I just, wasn’t confident enough to be like, hang on a minute. This is what I want. And now I’m a lot different now, but yeah, I would definitely say I felt that too. And it wasn’t really, it was nothing he did. It was just, I didn’t feel like I had, I could say that it, that makes sense. He didn’t, it didn’t even offer either. So that kind of made me feel like I was kind of pushed into it as well.

Cloe (00:36:43):

Yeah. It was a very weird situation in terms of like tips and like the like sex zone stuff. I’m very new to this. Like the arthritis friendly stuff. Like I’m still like having like the cramps and stuff. So I would love to hear anything you guys have to say. Because I’ve like, because obviously me and my partner being together just a year, so it’s not as long I was with my previous partner. I didn’t have that communic communicative relationship with him. So I’ve literally not had like before my current partner, I didn’t have any time to really be able to explore these different things. And I know my, my current partner will be open to literally trying anything because he wants it all to be comfortable for me. You know? Cause he’s, he’s like, he’s amazing. I don’t wanna gosh too much, but yeah, I know he would like do anything if, if it was to make me feel more comfortable. So I’m excited to hear what you guys have to say. So I’m gonna shut up now.

Cheryl Crow (00:37:34):

That’s no, don’t worry. That’s great. I mean, it’s great to have different people at different stages. Joe, did you wanna share anything more?

Jo (00:37:42):

Yeah, so, like I said, lube is my best friend and it’s a necessity. So anyone that has lubrication issues, I couldn’t recommend it more. And then positions wise, I was thinking my arthritis is mostly located by upper body. So hands in wrist, I don’t think that really affects me during sex. Like obviously with oral sex, that’s a different story, but I just wouldn’t do it if things were hurting too bad. And then I think for me, positions wise, spooning is good cuz it just lay there, but it kind of hits different than just missionary.

Cheryl Crow (00:38:19):

I, I meant to ask earlier, sorry, what brand of lube do you like?

Jo (00:38:22):

There’s a store in the UK. It’s called Ann Summers. I have like a selection.

Cheryl Crow (00:38:28):

Oh, okay. Okay. Nice.

Jo (00:38:30):

I think it’s like a cooling one and then something fruity again, a selection. I’m not gonna go into too much detail, but I like to have my pick

Cheryl Crow (00:38:40):

Then next we have ally.

Ali (00:38:42):

Yes. I have lots. I wrote it down. You guys I’m very excited. Yes. So I did like what you guys said or what Cheryl, you said about testing. So if anybody out is out there in, in the dating world. So like, like I said before, I was with my current boyfriend, I, I was completely very sexually active, but, and I was with long term boyfriends before then. So like Cheryl said, I wasn’t testing just because it was just them and unless they were cheating on me. However, if I think now, if I were single, like if something happened with my boyfriend and I, I would 100% demand a test before we got intimate and I know it’s weird, but it’s just best to do it. Like you would just be, feel better, especially if you have an autoimmune disease, just take that extra precaution and get them tested, you know, especially like it’s COVID right now.

Ali (00:39:24):

Like it’s not weird to be like, go get tested. You know, if anything, they’re gonna test it for COVID if that’s what’s going on. But yes, and also definitely being safe, especially with methotrexate. If you’re on thet Trix day, you cannot, 100% get pregnant. You have to be extra, extra safe. So I am on methotrexate and I take the pill and I even use a condom because I wanna be extra safe. My doctor tells me every time, please be safe because you cannot get pregnant with methotrexate. So I’m just putting that out there. But tips and Trix, I wrote lots of stuff down. So for the fatigue, which is my biggest problem when it comes to sex, I thought about scheduling it. So I know it’s weird, but scheduling it for when you are, you have your most energy. So if you know me, you know, I’m very energetic in the morning.

Ali (00:40:08):

So I haven’t really implemented this into my life, but I’m thinking about doing it when I have the most energy. So waking up, maybe starting my day with it, you know how I start my day with my pre-workout. She maybe started with sex because I have the most energy at that time. So that definitely helps with fatigue practice. I know it’s strange, but if, I mean, if you’re dating, this is different, but if you have like a, a, a long term relationship, I’m sure they won’t hate that idea of practicing, practicing to see what feels good for you at seeing what moves you can do and what positions you can do. And I recommend starting with the bed because any other location could be really hard on your joints, like the bathroom or the shower. The shower is like my worst nightmare when it comes to sex with arthritis.

Ali (00:40:50):

So definitely start with the bed, try those positions and use pillows to help you put the pillows under your stomach for like when you’re in you style or put those pillow in any way you need just help support your joints. And I promise you, I’m sure your partner won’t mind practicing. Like you can practice every day. So definitely practicing. We talked about lube and how that’s super important. Just a funny thing. If you guys are tuning in during COVID Travis and I ran, oh, sorry, my boyfriend and I ran out and we had to order it off. So I don’t know what brand it is, but that was fun. So, but usually I just, I get like something fun, like Joe said, and I get a variety. And then also the flavored ones are really a lot of fun and let’s see, communication. Communication is key.

Ali (00:41:35):

This is my last tip and trick B. I know we mentioned in the comments, when is the best time to bring it up? Especially if you’re dating, I’m very open about my arthritis. So usually on the first day, I’d be like, I have arthritis. Let’s talk about it. But when it comes to the sex, before you start it, you don’t wanna be in pain. You don’t wanna be uncomfortable. Be like, listen, I have arthritis. This is what I have to do. Do you wanna practice with me? Like, you know, like make it funny, but communication is key. Like I have a boyfriend who doesn’t communicate with me about it, so I bring it up and I’m like, we don’t have sex enough. And I wanna tell you why. And then he’s like, I understand, but let’s try this. You know? And so for me, it’s communication, but yay. Sex is good.

Cheryl Crow (00:42:16):

It’s good sex positive. And I think that you, what you bring up. So I there’s some studies that show that like extroverts are like super at attracted to introverts. And at least I have found that like all, almost all my exes have been introverts. And so I think sometimes introverts, aren’t comfortable being proactive about bringing stuff up up so, or they’re worried, right. They don’t want us, they might want to make sure that you don’t feel like they’re patronizing you or something like that. So I think, yeah, for better or for worse, if we’re the one who it’s affecting, you know, we kind of have to be the default person to bring it up and not like you cannot expect your partner to read your mind, you know? And so I think that’s a really, really good point and I loved, I loved all of your other points too. Awesome. Okay. What about Paulina?

Paulina (00:43:03):

You, so first of all, and I’m think I’m gonna say this multiple times during this tips and trick part is can you communication? Like I feel like I need to get it tattooed on my forehead for like everyone in my life to understand how important communication is like not even to do with sex, but to do with everything arthritis and to do with everything about the human life. Like communi, because you can never expect someone to be a specific way or to do something. You cannot assume them to be a specific way or to think about something because that’s your thoughts. And everyone is such a big individual that you need to communicate your beliefs, your thoughts, your thinking opinions or whatever, or for that other person to even be aware of them. Like unfortunately, no one of us is a mind reader. We can tend, we can sense energy levels and we can sense like if it’s what sort of energy someone is giving out, but we can’t sense what they’re thinking about.

Paulina (00:44:10):

Like that’s just impossible. So yes. Tip one and tip two and tip three and for is like communication about every single detail when it comes to your romantic relationship when it comes to sex. Like, like I mentioned in the beginning, like even a simple shift of a position, or like Allie mentioned about the pillows, such as simple communication thing. Like, okay, can you grab me this pillow? Or can I position my hand this way? Or, you know, can I move my leg in this way, rather than that way, just being open about what you’re what’s in your head is gonna make you feel so much better because it’s gonna be out there. You’ve said it, you’re not holding it inside. And also the other person is going to know like what they can do to make it better. Definitely lubrication for me. However, I know that you guys mentioned like fruity, you know, fun selection and that sounds exciting.

Paulina (00:45:06):

However, I have a very sensitive skin and I have like very sensitive reaction to chemicals, especially on my skin or anything like that. So I always have to get like water base. Like it’s pretty much just water with Alovera I think, or even not even that, I think it’s just like, even something more natural because, and even to be fair, even something funny, we ordered a, like a water based one that we normally use and that’s always been fine. However, then we ordered the same brand, still water based with a hint of, I think it was like tingling or cooling or like something fun like that. And I thought I’m gonna, like, I had to jump in the shower straight away because it was so bad and I react so quickly to these things as well. So, so for me, it’s also the fact that I have to be very careful about like what lube I do use and water based and like as little ingredients as possible.

Paulina (00:46:10):

And that’s what sort of works best for, for us. So, yeah, lubrication and I think a lot of that as well is linked to sort of communication because I don’t know, but for some reason using lube has become very, I don’t know, for some reason people don’t like to say like, oh, can you grab lube? Like let’s use it because it’s gonna make it better. But honestly you just have to think about like the purpose of sex is to have pleasure and to enjoy it. And if you’re gonna do it in a way that’s not giving you that, because let’s say you’re not lubricated to talk about that topic. It’s just completely like destroying the whole purpose of what you’re doing. So it makes complete no sense. So just be honest about it, be honest and communicate about out your feelings of what you need so that you get that pleasure.

Paulina (00:46:58):

Like everyone has a different way of experiencing pleasure. And you just have to communicate about these little specifics as well. Like I mentioned before, my risks are the ones that are mostly affected and being on top is also like a very favorable for decision for me. So you can imagine like that being quite, you know, tricky, however, you can still be on top and be on your forearms rather than on your wrists. So like that would be a tip, just use your forearms and yeah, you’ll be lower, but actually it makes it fun cuz you’re closer to your partner, which builds up that intimacy even more. And then with the knees and we’re talking about workouts here, cuz we are having some amazing conversations, but rather than being on your knees, just be on your feet, like you’ll be working out at the same time and you’ll still be in a very similar position, even like the same position and yeah.

Paulina (00:47:50):

So to avoid the use of the joints, which are affected mostly and just playing around with trying to use a different joint, like rather than the wrist using the forearm rather than, than using your feet. So that would be a huge, I’d say that’s more like a practical tip that I’d wanna say about the sex dry. So I, like I said, I’m like very like I’m a giver I always want to give and I always wanna satisfy. And I think, yeah, like I said, most of us are. And once again, like I said, I’m gonna mention this all the time, linking back as a communication sometimes when I don’t feel like I want it because I’m too much in my head and not just about like Chloe mentioned such an important thing of how you need to be connected intimately with that person to be, let’s say lubricated or to feel like you wanna have sex.

Paulina (00:48:40):

But it also, I feel like it also links back a lot to what’s in our head at that time anyway. So you could be connected to your partner like a hundred percent, but maybe you’ve had a bad day with a flare or maybe something else bothered you. And I mean, it’s not just the flare pains. We’re also affected mentally by the things that we experience. And some days we are more sad about the life that we lost and some days we’re more sad about something else or maybe more hair fell out that day or like whatever. So I feel like it really like the links back to what’s in our heads as well, that affects our sex drive. And when you are in a relationship to me anyway, I always live on compromises and I live unlike communicating, okay, we do this because this is what makes them better.

Paulina (00:49:29):

This is what they need. Every everyone has human needs. So this is what they need and this is what I need. So let’s make it work. And I would say that a big one that’s been a huge help for me is like sometimes if my partner needs to have sex, because that’s a need that he has and I’m not so much into it, I would compromise and still do it. It would just be more like, I don’t wanna call it like a, to do thingy or like a, you know, business transaction. But I feel like it’s still that communication of, you know, I really need it. I understand. You’re not feeling well, but maybe can we do this or that? Or could you help me? I don’t know, by being there next to me while I do it myself, you know, even like simple things like that. And so I would say like maybe experiment and try out how that makes you feel. It’s more about communication. Oh my God. Again, communicating about your feelings, your emotions, your thoughts, compromising it in a way and just finding your way so that both parties are always happy or most of the time happy.

Cheryl Crow (00:50:39):

Okay. Allie, what else did you wanna say?

Ali (00:50:41):

Yes. So I know you mentioned toys in your question. So I thought about this and it’s a that I use quite frequently, but a vibrator for us. So there is one that we have CVS here, but it’s like a small, how do you explain CVS? Like a, like a little store? Yeah. Yeah. Like a pharmacy store. And it is a ring with a vibrator on the side of it. So you put it on their, their things and it goes so, so it could stimulate your, your, you know, your CLIs. So it really does help with like the whole cuz you know, we need lubrication down there, but you wanna get in the moment and you wanna get the fluids flowing. So really like stimulating that area of ours would really help. So he we use that ring and he puts it on and it hits that spot. So it could really help with getting the area less dry and getting you kind of in the moment, also just a tiny vibrator that can use when he’s doing anything or you just need that extra help. It, it really does help cuz it helps get the fluids going a lot quicker.

Cheryl Crow (00:51:42):

Oh yes. I I’m gonna post in the comments. I have a really great CLI vibrator that I use. It’s not, it’s where you have to hold it. But for me, like a bet, apparently 70% of women don’t climax through penetration alone. And I’m definitely one of those. And I didn’t know that until I was like in my early twenties for me. Yeah. My routine that works the absolute best to do the CLI stimulation first and then the six penetra.

Cloe (00:52:09):

Yeah. So, you know, I, I just wanted to like chime because I thought I didn’t have any tips, but then listen to all you guys. I was like, wait, I do have some actually yay. Well, I’m gonna say that, you know, the famous word that we’ve all been saying, communication is a hundred, thank key. I’m not gonna go on too much about it, but I would a hundred agree with all you guys, communi is a hundred important. And I feel like when you have that communication, you do feel more able to kind of voice your concerns and say like, oh well can we do this? It’s like poly like, oh, can you grab me that pillow? So I can just put it under here? Or can you grab the label and stuff like that. So hundred percent. But I also wanted to say, I think what poly said about PR poly, not all, I can’t quite share about practicing the sex.

Cloe (00:52:50):

And that was, I did that with my boyfriend, not too long ago, actually we were just sat talking and then I said, do you wanna like try out some new guns? And he was like, yeah. So we were like, just Googling. We thought, right. We’ll pick a few. Or we went upstairs like literally like fully clothed. And we were just like trying out and I’m not gonna lie. It was so funny. We were having so much fun. Like it doesn’t have, have to be awkward. It is just funny because one you’re fully clothed. So it just feels a bit odd. And two, like, you feel like, I mean, some of them are like, you feel like you’re playing twister or something and you know, when literally like when this goes, what, what, what, how does this work? So I would a hundred percent recommend that.

Cloe (00:53:26):

Like, you know, it’s just funny. You can have a laugh and then you can actually figure out actually not all that hurts. No. Maybe if we just, and then you can do all those adjustments. I would find one position that I find, you know, and, and the same as quite a lot of what the girls have been saying. I quite like being on top as well, which obviously poses a, a problem obviously for my wrist and obviously my hips too. So the spooning position is actually, I really enjoy that as well. Cuz I can just kind of like Jo, so you can just kind of lay there. You can just lay there. So I would hundred percent recommend that a hundred percent practice sex positions. It’s honestly the best thing you can do.

Cheryl Crow (00:53:58):

I really love that you guys practiced it outside of the context of actually having sex. So practiced it well fully cloth. I think that’s such a fabulous idea. And you know, I wanna put a quick plug in here, occupational therapists, like this is actually part of our job. So I am an occupational therapist and we learn about this. It’s just, there’s this giant gap where like we’re not serving people with these needs obviously, which is why you are all like I never, no one ever brought this up. No one ever helped me on this. But like we consider sex as an activity of daily living. So like Paul was saying, we have all these tools and tips for all the other activities of daily living, you know, putting on your clothes, cleaning, we have all these life hacks. They, we do get trained in like positions and stuff like that.

Cheryl Crow (00:54:42):

And there are some occupational therapists who specialize even for further in sexual health and intimacy and with physical positions. And I mean, if you go online, a lot of the information that you can Google about like good sex positions for arthritis, it is kind of geared towards the elderly with like osteoarthritis. But some of it does still apply to us. Like we talked about the risks and stuff. So I’m just throwing that out there because like some of you are already have quite a bit of knowledge about like, you know, Paulina being a yoga teacher and Allie being a personal trainer. You guys have a lot of knowledge about the body mechanics, but an occupational therapist could all, if you don’t have that understanding of like, oh yeah, that’s five centimeters to the left or right. Could really help. One more thing. I was gonna say before we go back to Paulina is I think a, a lot has changed in the way that children and young people are now exposed to like, how I gonna say this?

Cheryl Crow (00:55:35):

I’ll put this way. I’ll put it really bluntly. If you look at like all the movies and all the sex ed stuff from like the late eighties and early nineties, when I was went through puberty, it was basically like sex is something guys want to do. And it’s about they, them having fun and girls have to protect themselves from the guys like, so it was scary. Like I went through this, this program that was really big called dare to keep kids off drugs, did a bunch of like extremely fear based sex education. If I have sex, once I’m go in to get pregnant and have an STD and I’m gonna die. It honestly took me a while. Even though I had such amazing partners, it took me into like my mid twenties to be like, oh, like even though I enjoyed having organiz and stuff, but I was like, the fundamental assumption in my mind is sex is something that I do for my boyfriend.

Cheryl Crow (00:56:23):

It wasn’t for me, you know, it wasn’t for my own pleasure. And that obviously is problematic. Right. So I don’t know if anyone else listening is, you know, grew up in an era. I think people are a lot more, the education with young people today is a lot more, you know, open. I mean we had, of course there was nothing about gay and lesbian. It was all that was all like off limits. Like everything’s a lot more better today. I know it’s not perfect. But back then, you know, I grew up again with this very fear base and it’s all like sex is something boys want and you have to tell them no and like keep them away. And it’s sex is something that boys like, because it feels good to them. There was like nothing ever mentioned about female pleasure. So anyway, so, okay. Poly understood.

Paulina (00:57:06):

Yes. Right. So another thing that just came into my mind and it kind of really nicely links to what you just said when like we were talking about like self pleasure and all of that. Right? So whenever what I found is when I’m not so much into it or when I’m not so much, I don’t know, my head is just not in it. I feel like knowing how you get your pleasure can really help because then you can make sure that you do that before you even start having sex. So like have your partner hype you up so that your sex drive sort of increases by doing the things that you really like before you go in into it fully. So like the foreplay, but like really doing what you enjoy so that you can get outta your head or get out of whatever is bothering you. And, and then that can help with getting up that sex drive. And once again, it just links back to communicating what you enjoy, what you don’t enjoy and doing sort of those things when, when the time comes that you need to

Cheryl Crow (00:58:05):

No we’ve covered so much. And the only other thing I remember learning in occupational therapy school was timing people’s pain medications. So timing it to where you pre give yourself a pain medicine before having sex. That’s a, a general tip for anyone who has chronic pain to maximize their sexual, you know, pleasure. So you can time like take a Tylenol or whatever your doctor has recommended, or even put something like one of those topical cooling gels on, let’s say, it’s your wrists, you know, just to allow you to have that, have that maximum amount of, of physical comfort. So this is about time to wrap it up. Is there anything else anyone wanted to share that they haven’t had a chance to?

Paulina (00:58:45):

Yes. I just remembered what I was. Yes.

Paulina (00:58:49):

I was gonna say like sort of links back to what I was saying too about knowing what gives you pleasure. And then we mentioned toys a little bit and I love the ones that were mentioned really love them myself too. But in like to step out, even further from that you don’t need to think of to as just something that’s gonna help your arthritis or help your situation of arthritis. And I feel like that actually links really well here because like trying out different toys, trying out different ways of, of, I don’t know, experiencing sex can add onto the pleasure, which can then shift your mentality. And we know that for us girls, like mindset is everything when it comes to sex and what’s in our head. So experimenting it from that perspective and yeah. Having a box full of toys of a specific thing, because you just enjoy it and not just like, look at it in a perspective of like, that’s what I need because that’s what my arthritis needs sort of thing. And yeah. So yeah,

Cheryl Crow (00:59:50):

That makes a lot of sense. And I think it helps that these, you know, vibrators are very commonly used for anyone it’s not necessarily considered like a quote unquote disability aid. Right. You don’t and yeah, it’s a, doesn’t really get people in the mood to think about using some ugly, bulky, like let’s put my splint on and have sex, like yay. You know, so yeah, I think you’re right to, to remember that it’s not just a disability thing. It’s everyone, you know, needs these extra aids sometimes. And Joseph’s just a sex bet bag with all the supplies she needs. Ooh, exciting. I I’ll give everyone a chance to give any final comments or maybe to somebody, you know, listening who, you know, feels maybe they’ve just been diagnosed and they’re just scared about how this might affect their relationships long term, you know, any, any final words? No, no worries. If you don’t have any, but Chloe, why don’t you go first? If you do,

Cloe (01:00:41):

Probably just someone who is just diagnosed and they’re worried like how it’s gonna impact their, like their long term relationships. I would just say to them that it may not work at first. You, it is very much, I, for me, it’s been like a trial and error kind of thing, and you’re not gonna, it just like with dating in general, you’re not gonna find the right person straight away. And honestly, when you do, you will find that right person, it may feel like that you want, and you feel like you won’t meet someone who will understand you and your struggles and your condition, but it will happen. And you’ll realize that this is what you’ve been working for. And also to realize like when you are, when you feel like that, you’re not being understood like with your partner, just because you may love them and you don’t wanna hurt their feelings or you don’t wanna lose them.

Cloe (01:01:23):

You need to say you, you’re not taking it seriously. You’re not understanding what I’m going through, because if they can’t understand what they’re doing is making you feel, then they’re not worth being with like it’s, it’s, it’s blown and it’s harsh, but it’s the truth. And I wish someone had told me that when I was with my previous partner, because it took me a long time to realize that I deserved a lot better. But also obviously for me, like, you know, arthritis is such a struggle, struggle for all of us. But I, I had like, kinda like this sense of doom when I, I mean, I got diagnosed as a baby, so, you know, I didn’t have any input when I was a baby. But when I was growing up, my rheumatologist said to me, she said, you know, you could grow out of it because it’s what juvenile arthritis can be.

Cloe (01:02:03):

Like, you can grow out of it. And I hung onto that hot for a long time. And then I got to about 16 and she said, and it was getting worse. And she was like, I don’t think you’re gonna go out with this. And that. I got that. I sense of impending doom. And I was like, this is it now. Oh my God. Like my life’s over. And I just want to like discourage people from feeling that, like, I know it can feel that way. And it’s so hard to get all that mindset, but just know that it isn’t the be all. And then at all, and you will find someone who will understand you and you can get that intimate connection. And it sounds cheesy, but there’s hope there really is hope. And I feel like I just feel really passionate about it. Like, you know, like, cuz I’ve been, I’ve been there myself and now I’ve like, come out the other side and you know, the grass really is greener. Really

Cheryl Crow (01:02:45):

You’re so wise for being 21. I’m just amazed. That was, was so beautiful. I think we, we gotta like put that on like a shirt or something, everything you just said, maybe a LAR a large shirt that was beautiful.

Cloe (01:02:58):

A embroider

Cheryl Crow (01:02:59):

Embroider. Yes. Yeah. Thank you. Yeah. I’m just so impressed by all of you. Oh my gosh. Okay. What about Joe?

Jo (01:03:06):

Okay. So before I say my final thoughts, I have like a little story. So during lockdown, I’ve done the Tinder as you do, kind of get, put myself out there again and obviously you don’t really want to bring it out of the blue. You know, I have arthritis, but so I have my arthritis, Instagram handle in the bio of my person, Instagram. And like when people ask for it, I mean, in my head they kind of stalk me and they see that. So they kind of figure out that I’ve got that without me actually have to be having to bring it up. And like, usually people are very polite about it, but there was this one person and what he said was, oh, as long as it doesn’t affect sex, we’re fine. And that was, I’ll just say that we haven’t spoken after that. But yeah, it was just kind of an example of what not to do what not to say, cuz obviously it, it affects more than just sex, but at the same time with auto modification and aids, it, it doesn’t affect it as much. Like, I mean, obviously you feel it, but it doesn’t mean it can’t be enjoyable.

Cheryl Crow (01:04:13):

Well that helped you narrow it down that you didn’t wanna take date him. It’s like, yeah, thank you for revealing yourself to be unworthy of me next.

Jo (01:04:20):

Yeah. But just my final thoughts, like I said, I’ve, I’ve experienced a relationship where communication has been great. And like, I feel like now I’ve got my standard set up in a way, like not to settle for anything less. Obviously it was different because he had a chronic illness, but you know, translating it to someone that doesn’t have chronic illness. I think I know what I deserve and how someone that’s truly empathetic and understanding just a good person in general should sound like,

Cheryl Crow (01:04:51):

Yeah, yeah. There’s gonna be somebody who listens to this and just feels so much more hope and, and support. So I’m so grateful for you all. How about ally,

Ali (01:05:04):

That big word of this whole thing, communication and just being really open with your partner and giving them the resources, you know, they would like to see those resources. Maybe they wanna listen in on this panel. I know this panel is really good for people with arthritis, but your partner might wanna listen in so that he or she knows how to work well with you. And also kind of what Chloe touched on. Like don’t ever feel pressured, you know, like if they’re not being cooperative with you or they’re not like Joe said, if they’re not okay with taking those precautions and really trying out those, you know, if they’re not helpful, just don’t feel pressured. We talked a little bit about that. Don’t ever go into it and be like, okay, just, I just wanna make my boyfriend happy. So I’m gonna do this even though it’s really gonna hurt me, like don’t ever do that.

Ali (01:05:46):

Like we were saying, enjoy it. It’s for both of you to enjoy, not for him or hurt, you know? Like, so if they’re not on board with it and they don’t want to learn and they’re just like, let’s sorry, I’m trying to get my thoughts together. If they’re just like, let’s do this and be done. Like, no, they give them the resources and communicate between one another. Let them know how you feel. And if they’re not on board, like Chloe said, thank you next, I’m sorry. But if you’re gonna be with them for the rest of your life, they gotta be on board with this illness and they have to be on board with this illness in bed. So

Cheryl Crow (01:06:15):

Yes, absolutely. That’s great. Okay. Paulina, any final words?

Paulina (01:06:21):

Yes. Thank you. So just so that you guys that are listening, feel a little bit bored from this little podcast is communication. OMG, what a surprise like the first time we mentioned it, no communication, but like, and if you’re not someone who feels comfortable communicating, because I know that is like that for some people too, just know that if you don’t communicate something don’t feel angry or upset or frustrated at another person for doing something wrong or for saying something wrong or for not knowing how to be, because you didn’t communicate with them. So you can’t expect them to, to know how to be. I mean, arthritis is, is like a learning curve for us each day. So we can’t expect someone to fully understand it or even a little bit understand it if we’re not truly being honest and communicating about it. So yeah.

Paulina (01:07:20):

So that, and to really pretty much repeat what Chloe said, like don’t settle down for less because like I know that for me, especially, I tend to feel like I’m a burden. Like I wanna do everything by myself. Like, you know, I don’t want the other person to completely change their life just because I need a little bit more help or a bit more support or a bit more needs. But honestly like it’s talking about the support that you need and talking about the help that you need and not being ashamed of it can actually make your relationship so much stronger. That’s in, that’s at least something that I’ve experienced, like talking about the things that you need support with is going to increase the bond in your relationship. Or at least it has been for me. So if you’re with your partner and maybe you feel a little bit disconnected, maybe go back and see how honest and how communicative you’re being about everything and see how they are.

Paulina (01:08:19):

Because if they’re not being helpful, they’re not being supportive in whatever area of your life. And this goes to like non-authorized warriors too. I’m sorry. But like everyone deserves to have someone who is fully supportive and understanding and caring. So just don’t settle down for less. I know that. I think Cheryl, you mentioned that you were like picking out the good guys in the past. I’m like the complete opposite. Okay. I’ve had a very boyfriend. I’ve had a very past relationship life. And like we said, from my, our bad experiences, we learn what we don’t want to have ever again. So if you are at a point where you’re like, you know what, this is what I want in a guy and blah, blah, blah. And all of these points, stick to that. You’re not needy. You’re not expecting too much. Your standards are not high.

Paulina (01:09:11):

They are just what you need to be happy and to live your most like authentic and happy life. So stick to that don’t ever settle down for, for, for anything lower. And especially if something affects your health or your pain and health is physical and mental guy. So like, don’t forget about that. If something affects your mentally or physically in an a, in a negative challenging way, then just spin it. If he is making you feel, if he is making you feel bad in whatever way that could be at all, you, you just, that that’s just not someone for you. So just know that there are people out there who will be a hundred percent supportive and you don’t wanna settle down for anyone lower that than that, because you are missing out on an amazing guy. Who’s gonna help you so much more, any last closing tips, if you are not in a relationship and you are still sort of dating and, and testing the water, so whatever however you wanna call it.

Paulina (01:10:17):

And me, when I introduce myself, I’m like, Hey, I’m Paulina. I’m this, year’s old. This is my favorite color. And this is my hobby. And my passion and arthritis is one of those things about me. So I don’t hide it. I don’t feel ashamed about it. I’m actually, and I’ve said this openly to everyone, like I actually feel grateful that I have arthritis because it opened up my mind. It made me such a better, stronger, happier, more supportive and communicative person that I feel like if I didn’t get hit by arthritis, I probably would’ve never been the person I am now. And I definitely wouldn’t have met this amazing community that we have so own it, like, oh, at least that’s I do. I, I just own it. I’m like, Hey, I’m Paulina. This year’s old. This is my favorite color. And by the way, I’ve got arthritis and you know what?

Paulina (01:11:02):

It’s pretty cool because you can be a supportive boyfriend and help me. And that way we’re gonna love each other even more. So I’m so happy that I’ve got my little ponytail today. Cuz I can like flip my hair with the attitude that I have today. But yeah, like bottom line of it all guys or whoever’s listening or you know, you just have to value yourself as a person. Like know your value, know who you are, know what you’re like, know that you deserve everything that you want and, and reach for that. It’s hard. I’m not gonna lie. Like sometimes it might be hard and we might be having these little rocks on the road and just know your value, know your worth and know that just because you came across someone, doesn’t make you a person. And it doesn’t mean that you have to settle for a person or for a thing or a relationship or yeah, there’s no definition of a normal relationship.

Paulina (01:12:01):

There’s no definition of like, this is what normal is because everyone has a completely different normal and everyone has a completely different way that they wanna live their life. So, and every, every, every option, every opportunity, every path that you wanna take is wonderful. It’s beautiful. And it’s yours and it’s unique. So reading a book right now, and one of the things in the book, one of the sentences was basically like, please get out there and do what you need to be happy so that the world can get your amazing, awesome self, because is you have something to give this world. So own it be that person because the world is gonna thank you for you. Simply being happy and giving back to that to them. So that’s it going

Cheryl Crow (01:12:45):

Out, dropping

Paulina (01:12:46):

The mic,

Cheryl Crow (01:12:47):

Pulling it out. Everyone who’s gotten this far in the episode deserve everyone’s a cookie and free sex to, I know I wish. Yeah. Well thank you guys. Seriously. Thank you all so much. I learned a lot, even though I’ve been living with this for 17 years and there’s something so powerful about personal stories. This episode is brought to you by the rheumatoid arthritis roadmap. You’re a guide to a full life with our right. It’s my comprehensive online education and empowerment program. I’m so excited about it and to learn more, go to www.myarthritislife.net.