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Sex, Intimacy, and Chronic Illness

Cassie:  Welcome to “The Real Life Show: Living with a Chronic Illness.” We are your hosts, Cassie and Chelsea. I’m Cassie, a single mom living with a chronic illness, who is extremely passionate about living a full and happy life.

Chelsea:  And I’m Chelsea, a mindset coach that has a passion for helping people learn to put themselves first and be the best version of themselves each and every day.

Cassie:  We came together to create Spoonies Unite, an uplifting community that offers resources, guidance, and support so you can live your best life while giving you the space to be yourself, be heard, and feel understood. We hope that by providing education from experts, we help spoonies and their loved ones thrive.

Chelsea:  This show is not only for those who live with a chronic illness, but their friends, family, spouses, and just anyone else existing on the Earth. Our goal is to normalizing having a chronic illness by sharing the real stories with real people and show the world how relatable those everyday struggles can be. There’s a little something in here for everyone.

Cassie:  And of course, thank you to our patrons for your continued support making this possible. If you love our show and want to get some extra goodies, go to patreon.com/therealspooniesunite. Enjoy the show.

Chelsea:  Hello, everyone, and welcome to today’s episode of “The Real Life Show: Living with a Chronic Illness.” Today, Cassie and I are having a super fun conversation all about sex and intimacy. So, if you are someone who does not like to listen to sex-related topics, maybe you should skip this episode. I promise we’re not going to get overly crude with it, but we are going to have a real conversation about stuff that happens in life. So, again, if this is something you are not comfortable with listening to, please skip to the next episode. You will not hurt our feelings, but we really–

Cassie:  Maybe like family and like loved ones in that sense of family. Maybe don’t listen to this one–

Chelsea:  Mom and dad, please don’t listen to this one, please.

Cassie:  Yeah.

Chelsea:  Please, please.

Cassie:  Yes. Family, please don’t listen to this. Skip. Skip now.

Chelsea:  But Cassie and I, we really just want this conversation to be like you are sitting around with your girlfriends hanging out. And if you are a dude listening to this, then hopefully, you just get a little bit more insight to what your lady might be talking to if you’re in a heterosexual relationship, or whoever you’re with, it doesn’t matter. We just want this to be really open conversation, and we would love to hear your thoughts about this episode! Feel free to take a screenshot of the episode. Post it on social media. Tag us, @therealspooniesunite. We would love to be able to find out what topics you would like us to go into a little bit deeper, because this is “The Real Life Show.”

Cassie:  Because this is “The Real Life Show!” Oh, my god, we couldn’t even play on that.

Chelsea:  We said it at the same time. That was not planned, people. But we really want this to be a real conversation, and sex is a part of life for pretty much the entire population. If you are someone who identifies as asexual, then this might not completely pertain to you, but there’s still ways to be intimate without being sexually intimate. And so, a lot of what we’re going to talk about today is going to talk about like the mindset behind how you’re feeling about yourself and how you’re approaching your partner. And so, we hope that you find this to be a helpful and informative episode. It makes you feel a little bit less alone out there in the world. So, to start us off, Cassie, what do you think is the most important part about being intimate with someone?

Cassie:  Oh, my gosh, that’s such a difficult question.

Chelsea:  I know.

Cassie:  Okay. First of all, too, I just want to say that this is one of my favorite topics to talk about. I’m super open and–

Chelsea:  She is. There is a spoiler. I’m going to share this, Cass. She’s got a book that’s coming very soon.

Cassie:  Hopefully, hopefully.

Chelsea:  Hopefully. It’s going to happen.

Cassie:  Yeah. It’s going to happen.

Chelsea:  It’s great.

.Cassie:  It is raunchy.

Chelsea:  It is raunchy, but it talked about real life.

Cassie:  Yeah.

Chelsea:  It’s great. Alright.

Cassie:  Yeah. So, I do like to talk about the sex, and I’m definitely–I think in my friend group, one of the ones who either brings it up or people talk to about it, probably I bring it up more than people come to me about it, if I’m totally honest.

Chelsea:  Actually, I’m pretty sure the first conversation we had was about Tinder and sex, to be completely honest with you.

Cassie:  Probably.

Chelsea:  I’m pretty sure that’s what we talked about the first time we met.

Cassie:  Oh, I think you might be right, actually, yes.

Chelsea:  I think that’s what we talked about.

Cassie:  I think that sex is a great icebreaker.

Chelsea:  I mean, it is.

Chelsea:  And then, there you go. You’ve already gone there.

Cassie:  Yeah. You’ve gone there, exactly. So, yeah. Okay. So, one of the most important things about sex and intimacy would be, I think, open communication. Feeling safe is for sure one of the big ones, too. And by feeling safe, obviously, I’m referring to like you’re physically feeling safe in your situation with who you’re with, but also emotionally that you’re feeling safe and feeling like you’re going to be cared for and respected in this situation. So, the safety means multiple in all the ways because when you feel safe in that way, you can trust. And then, if you trust your partner, then you can really let go and fully enjoy and have fun with sex. And communication, it’s all part of that, and I definitely have learned that communication is freaking where it’s at.

Chelsea:  Communication is so important. Again, I feel like we talk about communicating on every episode that we talk about, but it really is that important. I think even more so when you are putting yourself out there to have an intimate relationship with someone.

Cassie:  Yeah, absolutely. There had been in the past that I would try to communicate about sex and my partner wasn’t really up for communicating about it, didn’t really like talking about it, or would then say that talking about it took the fun away from it. Whereas for me, I was like, “What? But talking about it can be so much fun.” And so, I came from that to then the next partner I had was all about communication, and he would present ideas to me or suggestions or stuff like that and be like, “How does that make you feel?” And he would always give me the space to say how I felt about it, my response about it, and I always felt like how I was feeling was okay. And so, he really taught me about communicating. Like, there are people out there that want to communicate and talk about it, and that it is good, and that it is healthy, and it was one of the most healthy sexual situations that I had had ever with him.

Chelsea:  Yeah. I think it’s so important to be able to have, again, open communication going both ways and having that safe space. And when that’s not there, I feel like your experience is it’s definitely not as good. I know one thing that’s really important for me is physical intimacy is great, but I don’t tend to have as fun of a time with physical intimacy if I don’t feel some level of emotional intimacy first.

Cassie:  Yeah. And what’s really interesting about that, too, is I definitely have always been that way. I’m very emotional. I’m one of those highly sensitive people. I’m an empath. I’m a Leo, like, emotions are my middle name, okay? And funnily enough, it was like after my divorce, I just wanted sex. I wanted no emotions, I wanted no strings attached.

Chelsea:  Which is also okay, people.

Cassie:  Yeah. And I remember my sister-in-law, my friends being like, “But you’re not going to be able to do that. I could never do that. You could never do that. That’s not you.” And I was like, “I don’t know, dude. I am very unemotional and unemotionally unavailable right now to everybody.” And I was like, “I just want some good sex.” And I found it and it was great. Like I said, it ended up being one of the healthiest sexual situations because there was so much communication. It was so clear like black and white, like what we were doing, what was going on. He made me feel safe. I could be vulnerable. And so, that really goes into maybe finding the right person because I didn’t feel like I could express myself sexually so much. Like before that, I felt untrusting of being able to be myself. I didn’t always feel super safe in my situations because of all those insecurities and everything. And I had to work on myself a lot to work through all of that. But I also then learned that having the right partner can really help you work through that. And so, yeah. I also then learned that there’s lots of people out there who don’t see, I don’t know, see your chronic illness.

Chelsea:  They don’t want to define you in their mind. Right.

Cassie:  Right. They don’t want to define you.

Chelsea:  It’s a part of you, but it’s not all that you are.

Cassie:  Right. And so, that’s something I really want to talk about because I came from a place where I really felt like my illness was going to define me. And when my marriage had ended, and then I was out on the town, or like on Tinder freaking looking for a hookup, I mean, people are always like, “Tinder’s the hookup site.” And then, people are like, “No, people who are dating on there and finding relationships.”

Chelsea:  I met my fiancé on Tinder.

Cassie:  Yeah, people. So, that’s like a thing.

Chelsea:  But it kind of is a hookup site. I was asked to hook up a lot more than I was asked on real dates on that, I have to say.

Cassie:  So, I was one of the people that went on there and I was like, “I’m trying to hook up.” Like, I put on my bio, I was like–

Chelsea:  Good for you.

Cassie:  Thank you. Yeah.

Chelsea:  Good job.

Cassie:  On my bio, I was like, “Not looking for anything serious.” So, naturally, I got a lot of matching just because I was single on there, like, “I’m looking for sex.” But anyways, where was I? Oh, yeah. So, I was so afraid of telling anybody about my illness, and I definitely felt weird like, “Should I put that on my bio, or should I just never tell anybody?” And then, I planned on keeping it a full-on secret because my experience was that people would not want to touch me if they knew about this side of me, or that they would not see me as like a sexual desirable creature, or see me as less feminine. I don’t know. I had a lot of shit in my head about it, like I had a lot of different stories that I had told myself and that I was believing.

Chelsea:  Well, I was thinking like when we talked about our body image episode we did that one, you talked a lot about how you originally viewed your illness as being the icky one. It was the pooping one. It was the gross one. And so, I think it’s just interesting to see how our own perception of ourselves, our own body image issues can really bleed into the intimate relationships that we want to have, or how we feel about being intimate with someone, or having sex with someone because I know like on times when I just don’t feel good about myself, I don’t want to have sex. I’m just like, “No.” But if you’re feeling really good, I feel like you’re more likely to go down that road. I guess it doesn’t surprise me that for so long, you were viewing yourself as being kind of like “icky” because of your illness. I’m using big air quotes with my fingers for those of you listening to the podcast that can’t see me. Big air quotes around “icky” because it’s not true, but I think it’s interesting that as you work through that with yourself, it didn’t come into your intimate relationships as much.

Cassie:  Yeah, it didn’t. So, exactly. Like, I first presented myself without presenting anything about my illness on my Tinder profile. And there was definitely like because of all of those feelings of feeling unwanted, undesirable, indesirable, whichever the correct word is, I had a lot of insecurities. And so, I’ll just say like there was one situation that I found myself in–and by say found myself in, I put myself in it. But there was this guy, we kissed a lot, he was a great kisser, and we like spooned. He was a great cuddler and stuff and I was wanting to take it to the next level because I was out there like on the prowl. And we had been having some drinks and stuff and it didn’t work. The soldier wasn’t standing to attention. And I was super triggered by it. I was really insecure. I was like, “Oh, my god.” And this is one of my first situations out of my marriage. And so, I was like, “Oh, my god, it’s me. Like, it’s me.” And then, really, I was in his bed, we were spooning, I was feeling really insecure. I could not get out of my own head. I was like, “It’s me, it’s me, it’s me. There’s something wrong with me.” And then, I had this moment where I was like, “No, it’s not me. I am sexy AF right now. Who would not want all of this when I am putting it on a silver platter?” I’m like, “Hey, have it. This is yours for the tasting.”

Chelsea:  I love it when you said “tasting” instead of taking that. That was beautiful.

Cassie:  Yeah, you know. And so, then I was like, “No. What am I doing?” And so, he had fallen asleep. It was like three o’clock in the morning and I was like, “Fuck this.” And I got up, and I snuck out, and I left, and I went back to my apartment. And it was super empowering because I was like, “No. I am my own woman. I can leave situations.” Like, if I had stayed there, I would have been in this dude’s bed insecure the whole time, feeling like it’s me, feeling like I need to please, placate him and make it all okay. “It’s okay. I understand these things happen.” I don’t know that guy anything. I don’t know him. And so, I was just like, “No. I’m not going to sit here and feel insecure. I’m going to fucking empower myself and I’m going to leave.” And I did, and I left, and it was a really big moment for me. It was super empowering to where I was like, “No. I’m letting go of my past, I’m letting go of those insecurities, I’m letting go of those patterns, and I’m going to move forward. And I’m sexy, I’m wanted, I’m amazing, I’m my own woman, I choose what I want.” It was a really big moment.

So, I think that if you’re feeling those feelings of insecurities, you need to find something to empower yourself. It does not mean walk out on your honey, but find a way to empower yourself, and that might be like putting on lingerie and being like, “I’m a sexy motherfucker.” There is really sexy lingerie out there. Even if you have stuff like, if you have an ostomy bag, there’s super sexy crotchless high-wasted panties that might make you feel better about yourself. So, empowerment was huge. And then, we didn’t really talk after that.

Chelsea:  Well, yeah, that makes sense.

Cassie:  Yeah. I mean, he was sweet and stuff, but yeah, we didn’t really talk after that. So, then fast forward a little bit. And then, I found myself in a situation with someone else who–this was the guy who was super open with communication. And I did go back and asked the couple of partners that I’ve had, like what they thought about when they found out that I had a chronic illness and what illness I had, like, how did they respond to that? How did they feel about it? Did it change how they saw me? Did it change their opinion about me? And I had a couple of real conversations about it. And I really want to share that with all of you listeners so that you can hear from the other perspective that some of the stories that we tell ourselves and that we create in our heads are not reality.

Chelsea:  They’re just stories.

Cassie:  They’re just stories. And it might really help you to let go of some of these things, like if you’re telling yourself that you’re not sexy or that you can’t be honest about how you feel, or the things that you want to try, or the things that you want to do. Hopefully, with sharing this stuff, you can really let that go and realize that that might not be the reality in your situation. Now, I recognize that that could actually be the reality in your situation because I’ve been there, too. I was in a situation and in a relationship, and in a partnership that I couldn’t express what I wanted, I couldn’t do what I wanted to do, I couldn’t experience the things I wanted to experience and I didn’t feel safe. I felt very insecure.

But, there are situations out there that are different. So, with the next person that I was with, again I did not share my illness right off the bat. We were together for probably like a few weeks before I said anything about it. And then, I did tell him about it and he responded really well where he was just like, “I had no idea. You’ve basically hidden that really well. How are you feeling?” And was just like sweet about it, and that was it. It really wasn’t a big deal. There was part of me that was like, “Wait, do I want to talk about it a whole bunch? Do I want to talk about my treatment? Do I want to talk about my Crohn’s disease?” And then, I was like, “I don’t need to talk about it because clearly, it’s not a big deal for him. He wasn’t turned off by it. We still hooked up.” And so, when I asked him about his opinions and feelings, it didn’t face him at all. And I even asked him like, “Why do you think it didn’t make a difference for you?” And he was like, “I don’t even know how to answer that because I can’t get in the mindset or the understanding of why that would make a difference for somebody,” which I found really interesting that he couldn’t even wrap his mind around why it would make a difference.

Chelsea:  And I think that goes to show that there’s–I hate categorizing people because we all exist on spectrums, but in some ways, there can be two types of people. There’s people that are going to care about your illness and there’s people that are going to be like, “That’s just a part of you, but it’s not you. That’s not only who you are, it’s your illness.” And I think that just maybe if you’re around someone or with someone that is really viewing your illness as being who you are and what defines you, and that doesn’t say well with you, maybe it’s time to go find someone else that can accept your illness and still see you as a full person because they exist.

Cassie:  One hundred percent, they exist, people. And that’s why I’m sharing all these very intimate details of my life is to be like, I’ve met multiple people now in the last two and a half years or so that have three years that have shown me that this is the case. And actually, really, the majority of all of the dudes that I had met since my previous situation were like this, where they were open about it and it didn’t define me, it didn’t change their minds. And so, there was even times that once I finally did share about my illness, I was able to say like, when we were going to maybe hook up, I said, “I just had my Remicade infusion. I’m not feeling 100%. I’m feeling pretty fragile, but I also want to be touched, I want to have fun, I want to feel like I’m not just this ball of fucking chemotherapy.” And he would come over and we would hook up, and it was amazing because he knew how to treat me fragilely and tenderly, but never made me feel like that’s how he was treating me. Does that make sense?

Chelsea:  Mm-hmm.

Cassie:  He wasn’t afraid. It wasn’t like he said, “Oh, well, maybe we shouldn’t hang out then instead because you just went through this treatment,” where that would have probably reinforced my thinking of, “Oh, yeah, someone doesn’t want to be around me if I’ve had these treatments.” That would have reinforced that thought process, but instead, he was like, “Oh, yeah. We’ll just be extra tender. No problem at all. Looking forward to seeing you later.” So, that’s part of why it was such a healthy situation because all the moments that he could have responded one way that would have greatly reinforced my story in my head that I was telling myself, he didn’t. And there were no conversations about that. That was just who he was. So, that’s why it’s like, there are people out there like that.

There was another guy who he and I had a really big–we created quite a friendship with each other. We hooked up once, but we really had a really fun flirtatious friendship, too. I asked him about when he found out about my illness, if he saw me differently, and he’s like, “Not at all. It didn’t change my opinion whatsoever.” And he was telling me that he’s actually with a girl right now who has a lot of back problems. And he’s like, “With her,” he’s like, “I do think of things differently,” but he’s like, “I don’t see her differently. I think of sex differently because I want to make sure I’m not going to hurt her or that her back’s going to be feeling okay.” And I was like, “Oh, my gosh, that’s amazing.” That just goes to show again, people, that there are men and women, obviously, out there, for whatever opposite sex or same sex that you’re interested in sexually, they are out there, that they will not be put off by your illness, or you won’t be defined by your illness. Like in any way, you can still be a sexual fun creature.

Chelsea:  For sure. I mean, it just goes to show that a partner who you feel safe with is probably also going to want to take care of you and make sure that your needs are met, whether that’s because they’re trying to pleasure you in whatever way feels good for your body, or they’re also trying to do that and make sure that you’re going to feel good later. I mean, I know that sometimes when you’re doing stuff like your hip cramps and you’re like, “I can’t do this anymore.” And so, I think just being aware of what the other person is feeling is really, really important. I think when people really, really genuinely care about you, whether you have just a more casual relationship or if it’s a little bit more serious, that’s where you’re going to get people that treat you the way that you want to be treated.

Cassie:  Mm-hmm. Absolutely. Yeah. I mean, that’s exactly it, like you really need to have open communication. And those few instances made me really feel safe, like I could just be myself and talk about it, and say how I felt, and say what I needed, like saying, “I’m just feeling a little fragile right now. I need to be treated a little care.” But yeah, like a fun romp in the sack sounds real good right now, too. And that was something I never would have been able to say beforehand. And so, I think my advice would be like go for it, as in say how you feel, test the waters. Your partner might be really appreciative of your honesty if you haven’t been honest thus far. And if they refuse to have those conversations with you for whatever reason, then like Chelsea said, it may not be the best situation for you. Talking to maybe a sex therapist or a counselor might be good, finding a way, like asking them, “How could I approach this topic with you in a way that you would feel comfortable to talk to me about it?” Asking your partner what they need to feel comfortable. Is it about them?

Because some people maybe were raised in a way that talking about sex is very taboo. So, also remember that their upbringing, or their background, or their belief system might be what’s restricting the open communication about sex. It may have nothing to do with you and your illness, or how you see yourself, or your disability. It may have nothing to do with that and it could be purely about them. So, even being able to just say, “Why do you feel uncomfortable talking about it? What could we do to make you feel comfortable to talk about it? Can we talk about it?” Or like, “Could we try this? Could we try that?” In my now relationship situation, we’ve been super open and communicative about sex, which has been so nice because in previous situations–like I said, I learned that that was going to be a non-negotiable for me moving forward in a relationship after having a little bit of a taste and an experience of what it’s like to have open communication and feel safe sexually, and trust, and feel comfortable, and talk about stuff. I definitely was like, “Yeah. I need to have this moving forward.”

Yeah. We talk about anything. And I mean, there was even a time that he asked me like, “What do you think? Is there something that you think you’d want to try that you’d be nervous or embarrassed to bring up to me?” And I was like, “I can’t think of anything that I’d be nervous or embarrassed to bring up because I just want to be able to talk about it.” So, if that’s something that’s important to you, then there are totally people out there that you can have that kind of like open communication with who are going to share those same values to be able to discuss it. And that doesn’t mean that you have to overanalyze your sex life all the time, by the way. It’s just like being able to just be like, “Hey, I want you right now. These are the ways that I want it.” It can be fun.

Chelsea:  Yeah, I agree. I think that one thing that was coming to my mind as you were talking was how easy it is to get in your own way. And I know even though I don’t have a chronic illness one way that I could relate to how you often might feel, or how often you did feel before you’ve been able to look at yourself and sex and intimacy a little bit different is I know there was an experience I had where I was getting over really nasty cold and I did not feel sexy. But at the time, my partner was like, “Okay. Well, you might not feel sexy, but I find you very attractive.” And there was something about even though I didn’t feel 100%, someone’s still being able to look and be like, “Wow. I want you. That made me feel really, really, really good.” But the thing was I had to allow myself to feel good about that because it would have been so easy to keep being like, “No. I’m gross. I’m sick. No one wants to touch me.” And so, get out of your own way. And also, just trust that if someone wants to be with you, that they honestly want to be with you, whether just in a relationship or in an intimate way.

Cassie:  Yeah. I’m so glad that you brought that up. That’s such a great point because even if you’re feeling some way, they may not be seeing you that way. And I know that one of my friends,Her husband always wants her when she’s on her period, and she’s like it’s like clockwork. Like, he’s picking up the wrong pheromones or something.

Chelsea:  I have heard that there’s something that the pheromones you release when you’re on your period is supposed to make guys go crazy.

Cassie:  See, that’s interesting because I thought it was supposed to be when you’re ovulating because of reproduction–

Chelsea:  I mean, biologically, that would make more sense. I have heard that.

Cassie:  So, that’s like the case, and she has crazy horrible periods where she just feels like shit. So, she’s like not wanting to be–but sometimes again, you need to get out of your own way and be like, “Well, even if I don’t feel great about myself right now, they still see me as sexy.” And that’s a great point to bring up. And I want to talk a little bit about–okay. We’ve talked a bit about like changing your mindset, knowing that there’s people out there, open communication, finding your voice. So, you really need to learn that it’s like–or you need to know that it is okay to speak up and say what you want. And if you want to try stuff, you need to find that voice, you need to find ways to feel empowered. And that might even be you going and learning how to freaking change your oil, and then you feel empowered and like a badass. And I do literally mean changing your oil in your car. That wasn’t kind of like sexual anyways.

Chelsea:  That was not a euphemism.

Cassie:  So, yeah. Or moving a bunch of furniture around, if that makes you feel strong and empowered, go do that. And I even remember reading some stuff like if it makes you feel sexy to freaking turn on Beyoncé and twerk around in your bedroom on your own, and then you go up and start kissing on your man or your woman, if that makes you feel good, do it. Whatever makes you feel empowered and sexy and like a badass bi-atch or dude, do it. Find your voice. Okay. So, that also brings me into a little bit of like sometimes you may be rejected and you may not–like you might go and you might turn on Beyoncé or freaking Cardi B, and you might be twerking naked in your bathroom, and you feel like a sexy ass bitch, and you go upstairs and you get shut down. Honey, we have been there. I have been there hundreds of times.

Chelsea:  And I think that’s something that’s important just kind of mention is that I think there’s this perception that girls are always turning guys down, but–

Cassie:  Which is not true.

Chelsea:  Doesn’t always happen that way. I mean, I think that biologically, sometimes guys can have a higher sex drive. That’s not always true. I’ve heard lots of stories about lots of women, lots of podcasts, lots of books with articles where they feel like they’ve had a higher sex drive than their male partner, but I think just know that not everyone syncs up at the same time and is ready to go at the same time, and that’s also okay and doesn’t mean anything bad about you.

Cassie:  Right. And actually, that brings me to a really good point, too, Chelsea, is like knowing when your partner is turned on and vice versa is also good information because one of my friends, she likes it at night, he likes it in the morning. And that’s really hard sometimes to make that work between the two of those times and what they like.

Chelsea:  I totally get that. So, I’m kind of a creature of habit and like 10 o’clock, I don’t know what it is, but my body starts to shut down. Like if I am watching TV on my couch, 10 o’clock, it can be 9:55 and I’m like, “Yeah, I’m wide awake. My eyes aren’t falling. I’m good.” Ten o’clock hits and my eyes start to droop. And so, I’ve just learned that if something’s going to happen at night, it needs to get going by 10 o’clock, or very, very shortly after or it ain’t going to happen. Like if we wait ’til 10:30, I’m going to be like, “I just want to go to sleep.” And so, knowing that is really important. And there’s definitely been times when it’s like, yeah, we’re going to do stuff. And then, I’ll look at the clock and I’m like, “You waited way too long to take a shower and now I want to go to sleep.”

Cassie:  It’s valuable information to know these things. Yeah. See? And I’m kind of like an afternoon booty call kind of girl.

Chelsea:  It’s important to know what works for you.

Cassie:  The afternoon is great for me, or morning, or the middle of the night, fucking whatever. But same, like I often am tired in the evening or at night. Afternoon is a really–that sounds like fun to me. But anyways, okay, getting back on track. People, ladies, people, if you’re putting yourself out there and you are getting shut down, firstly, remember that 9 times out of 10, or actually I want to say like 10 times out of 10, it’s not about you, it’s about–actually, I am going to confidently say 10 times out of 10, it’s not about you, it’s about them, because even if they are feeling weird and seeing you differently, that’s about them, it’s not about you.

Chelsea:  Okay. And you probably shouldn’t be with them anyways, if that’s the case.

Cassie:  If that’s the case. If it’s happening over and over and over and over again. Now, every now and then, if it happens, like you got to give a person a break because just like Chelsea said, we can’t all just be turned on like a light switch potentially. We all have different clocks. There could be other factors involved. Stress, work, sleep, kids, et cetera. So, give your partner a break. But if it’s a pattern, there may be a point in time when you are scooping your self-esteem up off the floor and taking that energy to rebuild your self-confidence and your self-love that you might want to say, “How much energy am I investing into this? Do I want to keep investing my time and precious energy, all of my spoons, into rebuilding my fucking self-esteem and my self-confidence?” And I was there. I have been there. And there was a day that I was like, “I’m done rebuilding this,” and it was a super freeing moment. So, again, reach out to us because I love to talk about all this kind of stuff and we can totally talk about it together. We’re freaking in this together, girls, we got to stick–and boys, whatever, we got to stick together.

So, just know that when you are putting yourself out there, there is the possibility that the other person is not interested for whatever their reasons are, but don’t let that fully discourage you. If you want to try whips and chains, say you want to try whips and chains. And if your partner is like, “I’m really not into that,” then be like, “Can we start with maybe just like a blindfold?” And maybe they’ll be like, “Oh, okay. That does sound fun.” That’s what I’m saying, you don’t have to just like go all for it, or just say what you want, see where you can meet in the middle, or if it’s just like, “Hey, I want to kiss more. Can we kiss more?” And they could say, “I didn’t know that you liked my kissing so much.” And you can be like, “I do. Let’s make out.”

So, yeah. That’s a little bit of just saying like, put yourself out there. And if you find yourself in a situation that you are tired of putting yourself out there or tired of getting shut down, just know that there’s going to be a point in time that you’re going to have to do it all over again. Maybe you may end up deciding that this person isn’t worth that time and energy anymore, and you are going to have to put yourself out there again with someone new in the future potentially. So, you got to try. You can’t let something just dim your light and dim your desires completely. Does that make sense?

Chelsea:  I think it does. And I think another thing I’m taking from that is it’s important to know like what your non-negotiables are when it comes to being intimate with someone, having sex with someone, like what you like, what you don’t like, because if there’s something that you really, really like and your partner does not like that at all, and maybe it’s one of their non-negotiables that they don’t do that, well, then that might be a little bit of an issue and you have to decide, is that really something that you want that much that it’s worth looking for someone else, or are you okay with not doing that? I think just knowing your boundaries. I know being with someone that has similar interests in bed I think makes a big difference.

Cassie:  Oh, absolutely.

Chelsea:  Yeah. If you both have similar likes and needs and desires, then it’s just I think easier to get what you both want out of your physical experience.

Cassie:  Yes, 100%, I agree with that, too. And so, speaking of sex, this whole episode.

Chelsea:  We could be talking about sex for like 45 minutes, Cass.

Cassie:  I know, right. Okay. But safety real quick. We talk a little bit about safety, people. Okay. Condoms, STDs. If you have a chronic illness, I know it’s not like the sexy stuff to talk about, but you need to be making sure that your partners have been tested for STDs and you need to be wearing condoms to protect yourself. That is the case for everybody, people. I really hope that we all are in a time in life and in the world that we all know that. But when you have a chronic illness and if you’re on immune suppressants for medications and stuff, or steroids, you really do need to be extra careful. So, you need to get regular STD screening, you need to have your partners or the people that you’re going to be with, you need to use protection.

I really wanted to say that on here because that’s super-duper important. Even when I was married, I got screened for STDs every year, every other year, just to be sure. It’s just really super important. Sadly, that’s actually how my mom found out that my father had been unfaithful because she got tested. So, because of that, she told me like, “You should just get tested. You never know.” And I was like, “Okay.” And I have. So, it’s a good healthy thing. And so, you do need to be extra careful if you have a compromised immune system or what’s going on in your body. Also, you need to know your limits, you need to be hydrated, electrolytes, snacks, like–

Chelsea:  You Gatorade by the bed.

Cassie:  You Gatorade by the bed. And I do really mean that with care because it’s like if you’re going to have sex like 14 times in freaking 48 hours, take it from someone who knows. You need to be hydrated, and you need to have electrolytes and snacks. Have some salt so you can make sure that you’re staying hydrated. But for example, if you’re feeling really tired and it was really hard to walk around, or you’re lightheaded, okay, maybe don’t have sex right now, have a snack, get a drink, let it absorb. And in like an hour, you can resume the nookie. Okay? So, hydration, snacks, vitamins, just take care of your body so that it can do all the fun things that you wanted to do. That’s important, too.

So, I guess that also goes into like–if you’re planning on wanting to be intimate, you might know your body well enough to know that you don’t want to go have a giant meal. You may not want to choose the steak and mashed potatoes before you’re going to be having fun that night. You might choose the salmon and rice instead. Think about those things, too. You can set yourself up for a bit of success. And I know that this is kind of funny to talk about, but it’s true. These are the things you have to think about.

Chelsea:  Oh, it’s so true. I even think about those things. If it’s date night and we’re out to dinner, and I know we want to do some stuff later, I don’t want to have sex if I’m super, super full.

Cassie:  Right. It hurts. It’s not fun.

Chelsea:  So, I think being aware of that is important. And I know I’ve definitely been like, “Well, maybe I really want this giant calzone, but if I eat it, I know I’m maybe not going to feel the best. And then, maybe I won’t want to have sex. So, should I pick something else or should I just be sure that I don’t eat all of the calzone, I only eat half of it?” which to be honest is probably all I really need.

Cassie:  Right. Yeah. So, make those choices that can help you set yourself up for success because knowing that you have a chronic illness, it might be an all-day thing beforehand, or a week thing, a whole week beforehand. For example, a shower takes a lot of spoons for me. And so, there was a time over Christmas break recently that I was like, “Okay. I want an afternoon booty call and I’m going to go get it.” So, I took a shower, I laid down for like two hours, then I did my makeup, then I laid down and read for like another half an hour. And then, I had a snack. I’d drink lots of water and a liquid IV during that time. And then, I was like, “Okay. Now, I’m ready to go over at three, four o’clock and try this afternoon booty call situation.” So, I took several hours prepping for that beforehand. And you may need to do something like that if you have a limited amount of spoons, then you may need to adjust your day accordingly or carve out a full big amount of time. You just have to decide of course if it’s going to be like worth it.

Now, also, knowing that sex may take your spoons, okay, take your energy for the day, because I’ve been in situations that I maybe had like five spoons in the day and I chose to use two of them for sex, and no regrets, it was worth it. But there’s also the time that the sex actually may give you spoons. It can be super invigorating. You can get a whole bunch of endorphins. It can be really fun that you may initially feel tired, but then you feel like super energized. So, just know that things that bring you joy and things that bring you pleasure may end up giving you spoons. So, it’s going to go in one of two ways. You’re going to use spoons for your sex or you’re going to gain spoons for your sex. And you know, and you will know, that day or that time or that week, which of those it’s going to be. Okay?

And speaking of spoons, that also makes me want to say that if you have only a few amount of spoons and sex is not on the menu for weeks or months because of your body, or years, that is 100% fucking okay. Alright? If you cannot have sex for whatever your reason is, whether it’d be a physical reason with your body, whether it’d be your energy, whether it’d be the emotions, whether it’s chronic pain, whether it is trauma, whatever that reason is that you do not want to have sex, you are allowed to say that. It is your boundaries on your body and that’s okay, too. And that needs to also very much be said.

Chelsea:  Yeah.

Cassie:  Yeah. Totally. There’s definitely been times that for months, I wasn’t even interested in it whatsoever because of too much pain and symptoms, which also goes into–guys, I could talk about this forever. If you are having a lot of pain, you may have to do a little bit of mindset work and trusting to know that some of those areas that you experience pain in, you can also experience pleasure in. It’s also a really important thing to talk about and there could be an entire episode. Hopefully, we can find someone to actually get on here to really talk about the chemistry and all of the actual things of what’s going on with this. An expert, sex expert, pelvic expert, something like that. But there have been times that due to my Crohn’s disease and ovarian cysts and stuff that my pelvic region has had like a huge amount of pain, and when I experienced pleasure in those areas of the body, I found myself like crying afterwards out of just like the sheer fact that I’ve experienced pleasure in a place that I’ve only had pain for however long for.

And so, you may experience something like that, too, that when you do have enjoyment and pleasure, you may have a pretty emotional response of the body letting go and letting go of some of those, maybe kind of like memory pathways that have been held onto in the body, and that’s okay, too. These are things that are experienced by other people. And again, we’re talking about it on here because it’s the real life show and I want you to know that you’re not alone. And probably, you name it. I’ve probably experienced it in one of these sexual things because I feel like I’ve really put myself out there in a lot of ways that I’ve experienced a lot of things. But that was a big one for me. Experiencing pleasure in an area that I only was used to experiencing pain was pretty emotional for me and a huge release. And then, it did get to a point that actually, I had decided that there was one thing that we were doing that I was like, “I keep getting so emotional with this that I’m not ready to deal with those emotions and work through that trauma and I don’t really want to do this anymore,” and it was totally respected and like, “Oh, yeah, sure. Okay.” And I was like, “Cool. Okay. We can just take that part out of this sexual experience,” because I did find myself like not ready to face that stuff, and that’s okay, too.

Chelsea:  Yup. You don’t have to process everything all at once. That would be overwhelming, oh, my god.

Cassie:  Yeah. And so, you can choose. Yeah, you can choose. If you also are experiencing a lot of pain down there or you’re not sure if you haven’t had pleasurable sex for a long time, I really encourage you to play with yourself because how can you expect someone else to know how to touch you if you don’t know how to be touched? That also comes with a disclaimer that perhaps the other person may know how to touch you in a way that you didn’t even know that you know that you needed. That’s happened, too. But you should at least know some of the things that you like because that might help you to guide your partner for making sex more enjoyable between the two of you, and for you to tell him or her what you do like or what makes you experience pleasure without pain, or if your nervous system might be really on edge because you’re constantly in chronic pain or something. And so, you can find ways to release and have enjoyment just on your own to start relaxing your nervous system a little bit and saying, “It’s okay, body, for you to feel pleasure. You don’t have to just only be feeling pain. You don’t have to be like on guard all the time or on edge. We can also experience really wonderful and nice things, too.” So, there’s lots of books, Instagram accounts, podcasts about self-pleasure. Maybe I’ll put some in the show notes. But also, reach out. I’ll talk about it.

Chelsea:  So, one thing that I know, Cassie, you and I have talked about a lot is kind of like what goes through your head before you’re about to be intimate with someone because I know for me, the things I go through are like, “How do I feel? Do I feel confident? Do I feel sexy? Do I want to have sex right now? Am I tired? Have I eaten too much?” Things that I think a lot of us just check through. I mean, it’s mostly “How do I feel?” and “Do I want to?” I know that that’s a little bit more complicated for you. So, will you share with our lovely listeners what goes through your head before you have sex with someone or are intimate then in some way?

Cassie:  Yeah. So, I usually think like, “Do I want to? Am I into the situation? Do I want to do it? How do I feel that those feelings involve, am I going to pass out, or am I going to shit my pants in this moment?” And if both of those answers are no, and the first answer is, “Yes, then I want to do it,” then I’m pretty much down to have sex. So, one needs to think about those things. Like, if my tummy is bouncing all over the place internally and mangling itself and my booty hole hurts from going to the bathroom all the time, or something like that, or spasming, sex is not on the table. Now, I will say that there have been times that I have really wanted to do it and I have intuitively known that sex is a good choice for me at that time, whether that’s endorphins, the need for touch, intimacy, et cetera, that I have taken medication to basically shut down the spasming in my gut, shut down the nervous system so that I will stop having rectal spasming, so I can get my freak on.

And I’ve done that. But again, that’s been an intuitive choice. I really know my body very well these days. Actually, you know what, that was a pretty common occurrence for me for quite some time, to be perfectly honest. One of my symptoms of Crohn’s disease is called rectal spasming, and it’s essentially like you constantly have the feeling like you’re going to poop, but you don’t. So, that feeling when you first get it that you’re like, “I got to go to the bathroom.” If you can imagine that feeling for like hours on end a day and potentially even you running back and forth from the bathroom but nothing happening, it sucks.

Chelsea:  Reminds me of like what happens when you have a UTI.

Cassie:  Yes.

Chelsea:  Because you’re like, “I have to pee all the time,” but you really don’t.

Cassie:  Yes. That is exactly what it’s like, or like when you–

Chelsea:  Not fun. That’s not fun.

Cassie:  It’s not fun. It’s super not fun. Or when you’re throwing up and then you are dry-heaving and there’s nothing comes out but you think something’s going to come out, it’s like that, too. So, that’s been one of my biggest Crohn’s problems and symptoms, and it’s really difficult. So, I have a medication that helps with that. And so, there have been very frequent times that I know that I’m going to be having sex that I’ve taken that so that I don’t have to think about it, and I can let that go. So, that’s one of those like, yeah, check the box of like, am I going to–and then if I’m going to faint, if I’m going to pass out, that’s one of those things because I’ll get really light-headed sometimes. And so, I usually have to scan that. There’s people out there that may not be able to– because of their illness, may not be able to bend over because they might be worried about fainting. And so, sex and stuff could be more challenging in that way of positions.

But again, think back in the beginning when I talked about that partner who currently is with someone who has back problems and he is not concerned about like if that’s sexy. He’s concerned about how they can do it and have fun, and she feels good from it and doesn’t hurt. So, there’s people out there that are going to be like, “Well, we can have lots of sex that doesn’t involve you bending over.” So, yeah. That’s probably the things that I think about is, yeah, do I want to? Am I going to pass out? Am I going to freaking have some kind of other problem here? And, yeah. So, speaking of which you may–yeah. Again, if you are having physical restrictions to do with your sex life, talk to your partner about it. There are people out there who are completely okay with those limitations. It may be that you can only lie down.

I was in a situation where I was going to be one of the people that I would hook up with, wanted to hook up, and I was kind of like, “You know, I’m kind of like fainting and I really don’t think that I can do anything but pretty much lie there at this point. I can’t even lift my arms right now. I’m feeling so weak.” And he’s like, “That’s okay. You just have to lay there.” And I was like, “Really? Is that okay? You still want to get with this?” It makes me think of on the show “Friends.” Do you watch “Friends,” Chelsea?

Chelsea:  Oh, my gosh. Oh, yes.

Cassie:  Okay.

Cassie:  It’s like the best show ever. You know when Monica, Courteney Cox, has a cold and she’s in denial that she has this cold?

Chelsea:  I don’t like cold. Your nose is all stuffed up and she’s talking like this.

Cassie:  I know. She is and she’s trying to get Chandler to have all the sex, and she’s like, “You’re telling me that you don’t want to get with this?” with her robe. And then, she pulls out the Vicks VapoRub and he’s like rubbing it on her chest all sexy. So, that’s like how I felt. I was literally texting him and I was like, “I literally don’t think I can do anything right now, but I also want to have sex. I’m kind of horny, but I also can’t even sit up right now.” And that’s all I could picture like, “You want to get with this.” But he was totally all about it. He’s like, “I know you’re worth it. Let’s do it. You just have to lay there.” And that’s what we did, and it was great, and I was invigorated by it. I came from a place where I could hardly lift my arms, I was in pain, I was tired, I was a little bit like fuzzy-headed, I was having a lot of shortness of breath at the time, and we got it on, and then I was actually invigorated for the rest of the night. But again, I have learned to know my body. But I shared that part of the story just because if you are in physical restrictions to where maybe you can’t do all of the positioning or acrobatics, but yet you feel okay enough in your body for the actual intercourse, or oral, whatever. It doesn’t even need to be intercourse maybe like oral is your thing right now–

Chelsea:  There’s a lot of things that sex covers the umbrella for it.

Cassie:  It covers, yeah.

Chelsea:  There’s lots of things underneath that. It’s whatever you want.

Cassie:  Exactly. And maybe we should even like, for the whole episode, with us talking about sex, that encompasses everything involved in sex. And then, maybe even it’s nice to like–with beginning to close off or wrap up the episode a little bit because we have been talking for like an hour, and it is called “Sex and Intimacy with Chronic Illness.” To go into the beginning when Chelsea said that she feels the closest when she can be intimate and emotional with someone, freaking nothing tops like intimate, emotional, heart-wrenching, soul-satisfying sex of all kinds. And so, you can have all the fun and the fucking around, but when you feel fully safe with someone, and you trust them, and you feel emotionally connected to them, and you like that person, and you love that person, there should be like–I don’t know. You should be able to fully be yourself and be able to do whatever you want with that person. And that’s where it can be like doing nothing. Acrobatic might be the most fun because of what’s emotionally going on between these two bodies.

And also, intimacy does not always involve sex, like cuddling on the couch is intimate, sharing a meal together can be really intimate, or listening to the same podcast together, watching a show, or just like getting ready in the morning, brushing your teeth and getting ready for the day, can all be really intimate moments. And all of that, those intimate moments, especially when you have a chronic illness, I think, can be just as important for you to feel satisfied and heard in as the sexual stuff. We mostly talked about sex for the episode, but I think it needs to be said that intimacy is one of the most wonderful things and one of the most important things, especially if you’re in a place that you can’t have sex.

And what I mean like in your body, if you’re in a place or in your relationship, or if you’re single, or if you’re married, or if you’re in a physical situation that you can’t have sex due to, whatever those reasons might be, like maybe you’ve got a new baby, or maybe you guys are moving, or it could be work-related, or it could be that you’re fucking, the JJ hurts all the time. It could be all sorts of reasons. For whatever it is that you don’t and that sex isn’t right for you right now, intimacy is a way that you can feel that closeness with somebody, and it’s so super important. And that takes work and communication also to have with your partner, holding hands. Like I said, brushing your teeth can be like an intimate act together. What do you think, Chelsea?

Chelsea:  I agree. And I think it goes back to the open line of communication is where I think this all starts from. I’ve heard a really good definition, or at least a way of explaining intimacy versus sex is intimacy is like this big overarching umbrella, and then sex is underneath that intimate umbrella. So, it is all the other stuff that you just mentioned, Cass, of what being intimate can be, and I think being able to know, “Well, do you need some other form of intimacy? Or do you need something physical? Or what does that need for you right now that comes from communicating?” Knowing yourself and knowing how to express that to whoever that you’re with.

Cassie:  Yeah. I see. I freaking love that.

Chelsea:  So much comes down to communication. We talk about it all the time, but it really, really is that important to be able to feel safe and communicate what it is that you really want and really desire.

Cassie:  Yeah. Totally. And we’ve both had to work really hard to be more communicative. So, we understand the struggle, that the struggle is real. And I did write a blog post about knowing that you are not icky or broken and feeling desirable, and I gave some tips on how to help yourself to feel that way. So, you can take a look at therealspooniesunite.com and click on “Blog,” and then you’ll see an article about sex and intimacy, and kind of like empowering yourself and how to feel sexy. It’s mostly about you as an individual and how to feel your best self and how to feel like you can freaking walk out like Beyoncé. So, you can check that out, too, for a resource. And just like Chelsea said in the beginning, we want to hear what you want us to talk about. We will talk about anything on here.

Chelsea:  Yeah. We’re both kind of open books.

Cassie:  Mm-hmm. It’s “The Real Life Show.” We decided to call it this for a reason, and this is one of those reasons. So, reach out to us as always on Instagram, @therealspooniesunite, or via email, hello@therealspooniesunite.com, or our website. Everything is in the shownotes, or it’s in the outro. And yeah, we were so happy to talk about this stuff for you today. I had fun.

Chelsea:  It was fun. It was one of our, I think, more fun conversations between the two of us because it’s a topic that we both feel passionately about and believe in and want people to feel more comfortable with.

Cassie:  Yeah. We want you to feel comfortable. And hopefully, you can go and maybe have some fun with yourself or with a partner.

Chelsea:  In whatever way that means.

Cassie:  Yeah, in whatever way that means for you.

Chelsea:  Or in the afternoon.

Cassie:  Or in the afternoon.

Chelsea:  Or in the morning, whenever you’re listening to this.

Cassie:  Totally. Yeah. Freedom.

Chelsea:  Yes. Well, thank you so much for listening to us talk about sex, intimacy for an hour. We cannot wait to be back in your ears soon with some more juicy details about real life.

Cassie:  Yay. Bye, everybody.

We hope you enjoyed today’s episode. Please write us a review to help us reach more people like you.

Chelsea:  If you’d like to connect with Cassie and I, you can find us on Instagram, @therealspooniesunite

. You can also join our private Facebook community, Spoonies Unite, or you can visit our website, therealspooniesunite.com for all sorts of resources and to stay up to date with our current projects. And don’t worry, you can find all these links in the show notes below.

Cassie:  Thank you to our wonderful spoonie patrons for all your support. And you can become one, too. That’s right. All you have to do is go on over to patreon.com/therealspooniesunite and you can get all sorts of extra goodies like videos of our episodes and more.

Chelsea:  Any support is greatly appreciated. It helps enable us to create more content for all of you, as well as make this podcast sound better and better. 

Thanks for listening. We can’t wait to be back in your ears soon.

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