Sexcess Story: Ehlers Danlos SyndromE & Our Disability’s Impact On Society

Read Time: 45 minutes

A few months ago, I had the exciting opportunity to go on Heather DeKeyser’s podcast Sexcess Story. We discussed a wide variety of issues, but especially how disability can affect peoples’ sexuality or sexual expression. Below is the transcript of the podcast linked above.

Heather DeKeyser: Hello and welcome to Sexcess Stories, the show that tells the very real and personal stories that merge chronic illness and sex. I’m your host, Heather DeKeyser, therapist, wife, and survivor of triple negative breast cancer. Each week on Sexcess Stories, you’re going to hear from individuals and couples about how illness has affected their relationship and their sex lives. Not only do we talk about how just how challenging those effects can be, but we’re also going to talk about what the hell you can do about it. Listen along as stories of sexual challenge and tragedy become stories of sexcess.

Heather DeKeyser: Hello, and welcome back to Sexcess Stories, we’re here with episode 8, and today is a pretty interesting, um, conversation. I’m here with Lena McCain, and we’re going to be talking about Ehlers Danlos Syndrome and POTS. So she has both diagnoses, and we’re gonna kind of go through and just get a sense of her journey, and her story, and she’s going to share all those things with you, and then at the end, in the notes section of the podcast, I will go ahead and put, um, her bio which is what I’m about to read, as well as ways to contact her, if you have any more questions or just want to talk to her a little bit more about her journey beyond the podcast, she’s totally willing to let everyone who wants to, contact her. So I will introduce her a little bit, and then let her say, “hey.”

Lena McCain is our Founder here at Interfaith Bridge Counseling, where she continues her support for our organization as the Clinical Director. She also holds a Master of Arts degree in Clinical Mental Health: Mindfulness-Based Transpersonal Counseling Psychology from Naropa University.

Welcome, Lena, to Sexcess Stories.

Lena McCain: Thank you for having me, I’m so excited to be here!

Heather DeKeyser: Me too! What made you decide to do this with me?

Lena McCain: Yeah, well, you and I connected in the virtual world, just connecting of me wanting to get more on podcasts, and things like that, and then we just kind of clicked. I think more often than not, podcasts are really focused on, like, your qualifications and where does that come in, versus, you’re more experienced in lived experiences and identities, mixing it all together, so that really drew me on here with you.

Heather DeKeyser: Awesome, I think we met in a Facebook group, yeah.

Lena McCain: Yeah, quite literally. Real quick.

Heather DeKeyser: And we’re both in Denver.

Lena McCain: I know, makes it perfect.

Heather DeKeyser: So thank you so much for being willing to do this, and just come on and share your stories with your diagnoses, and disabilities, and let’s just dive right in. Sound okay?

Lena McCain: Yeah, let’s do it.

Heather DeKeyser: Alright, so the first thing I think it would be helpful for people to know is just kind of an overview of your journey. So, what diagnoses do you have, and how did you find them, or find out that you have them?

Lena McCain: Sure, so Ehlers Danlos Syndrome, otherwise known as EDS, which is what I’ll call it, um, yeah. I was 14 when I got my diagnosis, and I have hEDS, which is hypermobile EDS.

Heather DeKeyser: Okay, so what, what does that mean?

Lena McCain: That means, there are 13 types of EDS —

Heather DeKeyser: Holy shit.

Lena McCain: Yeah, there’ s a lot. And then hypermobility spectrum disorder has kind just been added in under the umbrella of EDS so if you have HSD you’re kind of considered part of a group, um, hypermobility EDS is a little bit different, and hEDS, which is kind of its short term, is more of an outdated term, but was around when I was young. And so, hypermobile.

Heather DeKeyser: Okay.

Lena McCain: Yeah. Um, and so hypermobile EDS, really hEDs, is you have really, really hypermobile joints. It means that like I can, I used to do really cool party tricks, right? Like a contortionist, I can bend my wrist a certain way, I can make, you know, my thumb touch my wrist, I can do all these things. I can sublax things really easy, pop 'em outta place, pop 'em back in, because that's how my body works. It's just very hyper mobile and loose. Makes sense In that way. Yeah. Yeah. So I was diagnosed when I was 14 primarily because um, I was supposed to be on my way to school and my mom like woke up and was like, oh, why is all of her stuff there? And when she came into the bedroom, my bedroom, I couldn't get out of bed. All my joints from the neck down had sublaxed. Um, and I couldn't move. And it was because I was on a really soft surface. For me that doesn't really work. And, and we'll get into that a little bit later, but —

Heather DeKeyser: What do you mean by “sublax?“ Some people may not know what that is.

Lena McCain: Yeah. So sublaxing is like in between a joint being in place and dislocating a joint. So —

Heather DeKeyser: That sounds painful.

Lena McCain: It can totally be painful. So like when you dislocate a joint, we all kind of have an idea of what that looks like. Something pops out and it has to be all the way popped back in.

Heather DeKeyser: Mmmhmm.

Lena McCain: Sublaxing is like when it kind of partway comes out or it does come out, but it can easily slide back in. Okay. And it may not stay in and it keeps sublaxing. So for me it kept self relaxing and I couldn't get out of bed. I was stuck in this very soft memory foam bed and just couldn't move. And my mom knew pretty quickly cuz my sister also has it, um, that for me something was up. So you know, we called the doctor, I was moved from a bed and then placed on a floor, um, while things got back, put back in place. And then we did the whole, there's this whole test and I can never remember the name of it. It starts with a “b” and I can never pronounce it, but it's basically a scoring system for hypermobility. And I was through the roof on the hypermobility part of the test. So they were like, yeah, you have this.

Heather DeKeyser: And there was like no indication prior to that that maybe this was something that you had. Was it like gradual onset or just all of all at once like that?

Lena McCain: I think, like, if we look back and really like played from when I was really little, we could see things that were true. Like I had very stretchy skin. My skin is very velvety soft without lotion. Um —

Heather DeKeyser: That kind of makes me wanna touch your skin right now. <laugh>, I won't. But it kind of, you know.

Lena McCain: Yeah, totally. I mean so those were type of things always being in joint pain but assuming it was just growing pains, um, and I was always flexible like doing all sorts of contortionist type of things that like people are like, oh she's just a kid. Right. Like kids can do that, they're just flexible. Yeah. And really it was because I was hyper mobile, it wasn't even a thought and in ways that I would sit in chairs like um, if I stand up you can watch my knees like kind of bow back and like that's always been the case for me. And that's kind of an indicator I've always been able to not just touch my toes but like put my hands firmly on the ground almost like rest my head on the ground. Um, when I sit in chairs I like to not just cross my legs but like basically cross my knees to my hips.

Heather DeKeyser: Okay.

Lena McCain: I always like to sit crisscross applesauce. There's just certain ways that are more comfortable, pain and writing, having to use different grips and getting annoyed with them. Like all those things were there, but didn't quite put it together. Sure. And then, you know, there were times like throughout um, middle school and early high school where like I wouldn't sleep on my bed. I had a memory foam bed. My mom would wake up and find me sleeping on the floor because that was just my preferred level of comfort. And it just so happened that one night I slept on my memory foam bed, I fell asleep really hard and all my joints sub lacked and that was like the onset, it just happened to line up. But if we had slowed down, we probably would've guessed it. And I was also a dancer too, so people like that was hard. Because it was important for me to be flexible. So how do you know if you have something versus you're just doing what you normally do? Which I danced all day every day. You know?

Heather DeKeyser: So could you continue to dance after that?

Lena McCain: I did. I danced for, I danced up until I graduated high school. I was gonna go off onto, you know, dance school for college. I got into some of the bigger name schools and then just had like an emotional break of like, “I can't do this, I don't want anything to do with this.” And then just took a  different turn. Um, and went to a book-based school instead and I still danced during those times cuz it is healthy to, you know, it is good for a hyper mobile person to move and keep working out your body. And I still love to dance. It just takes a different level of energy and a little more pain than it did when I was younger.

Heather DeKeyser: Okay. So you were 14 at diagnosis?

Lena McCain: Mm-hmm.

Heather DeKeyser: What happened right after that? Like how did you find that you started to live with having this?

Lena McCain: Honestly, <laugh> honestly, honestly, I was like, well whatever, I still have things to do. It was kind of like “out of sight, out of mind” until I was doing things that would really hurt. So like, it was like, okay I have this but when, when can I get back to my every day? And so it took me about four days to get my, my body back to normal quote unquote. And then I just threw myself into things. What I did realize as like as a teen in which actually really influenced my career later on is no one else had it around me. I mean my sister is 12 years older than me. And so she was grown with kids by the time I was diagnosed with it. Right. Like she was off living her life. We lived in different parts of the country and so no one had it. I didn't know a single other person who had it, no one my age. And so I spent a lot of time not talking about it and I still did the party favor tricks and things like that because that was the way to make it like a positive thing versus something super exhausting and painful. And like when I look back on that time, I really wish what I would've done is like slowed down and maybe asked for accommodations. Mm-hmm. And things like that because for me it was like, “I’m not disabled, I don't have this disability,” I don't have this chronic illness. But I did. And it wasn't until I would say grad school or not even I guess undergrad. There were parts where like I start, it started to show up in bigger ways and I couldn't ignore it as much.

Heather DeKeyser: Did you ever find like throughout high school that you experienced anxiety or fear around like if I'm dancing is one of my joints gonna dislocate? Or like not knowing when it might happen, when it might flare up? I don't know. Are there flare ups with this?

Lena McCain: There's a lot of flareups.

Heather DeKeyser: Okay.

Lena McCain: I would say now I would call it anxiety. Back then what I would call it was anger and frustration and, and grandiosity. So for my anxiety, I'm a really grandiose person. So if I'm being grandiose, chances are you can tell that I'm being anxious.

Heather DeKeyser: Okay.

Lena McCain: If I have everything put together, that's a huge flag that I'm actually really anxious. So <laugh>, when I was a teen, it was like I did everything. Everything was so calculated to make sure that I appeared fine. And then when it would flare up I would get so angry, like furious and have these big like explosions in, in my behavior and in my reactions. Like if I had a performance and I was running backstage right to get to the other side of the stage, my ankle would roll and I would get so angry that that would happen and I would force myself to finish the whole performance and then afterwards have to wear like a bandage or a brace and be just so upset. I refused to use like my mobility aids because that would, that would impact how people saw this like perfect picture of who I was. So was I anxious? Absolutely. Did anyone really catch it? No way.

Heather DeKeyser: Wow. That's so powerful. It's like the things that we do to hide ourselves.

Lena McCain: Mm-hmm.

Heather DeKeyser: And what kind of impact did trying to act okay, what kind of long-term impact do you think that's had on your body and your mind?

Lena McCain: Mind level, I'm a total perfectionist. I've had to spend so much time being like my perfectionism comes in to protect me, but it's not actually welcomed.

Heather DeKeyser: Mm-hmm, right.

Lena McCain: Body-wise, I think what ends up happening is when you're trying to make everyone think it's okay, the, the message you're sending to your body is like body, you're not good enough, you need to get it together —

Heather DeKeyser: Mm-hmm.

Lena McCain: You're not even like, you're not even meeting like baseline of what a body should. And I think our body, I know that our body takes those messages and it feels those and it kind of tucks away those messages to try and and motivate you when you're distressed. You know? And so the long-term effects is like you end up having a really harsh relationship with your body, a really upsetting relationship with your body. And because your body is what holds your feelings, that means you also don't get to feel those feelings.

Heather DeKeyser: Where do you think you learned that you're supposed to appear okay? Or where do you think you learned or how do you think you learned to like up my ankle rolled, I'm frustrated but I'm gonna finish this thing anyway.

Lena McCain: That's a great question. It's interesting cuz when you think of like, when I think about myself in that moment it was like, well that's just life, right? But hindsight's 20/20 you look back and you're like, oh no, there are so many pieces. I think on one hand society tells us there is a right way and there's a wrong way to do things. And the right way is mind over matter, keep pushing through, be successful. Be productive, do your best. And a lot of people would argue that your best is not stopping and taking care of your body if it means sacrificing your mind, right, and so those kind of like subliminal messages of like just keep doing. And in the dance world it's like dance is the, is the ultimate. Right? Like that's what you're striving for. So to be perfect and to be good at dance means that you will sacrifice everything in order to be the best of the best.

Heather DeKeyser: It's almost like if you're not going through some type of pain, like you're doing it wrong.

Lena McCain: Exactly. And so it was like, okay, so how much is this my disability, which I wouldn't have even used that word as a teenager.

Heather DeKeyser: Yeah.

Lena McCain: You know, how much of this is my disability and how much of this is like the belief or the, the conditioning that the world I was in, the art world that I was in was forcing upon me. Not to mention my mom has some pretty high standards. I love her so much and like I was her golden child. I was the youngest, the next youngest was 12 years older.

Heather DeKeyser: Yeah. And my mom was a different person when she had me, she was like in her, “I am woman hear me roar” phase, she had divorced, um, my sibling's dad at that point, she was a single mom with me. She had started a multimillion dollar business. We had moved across the country. And so for me, I got all these privileges and opportunities that my siblings didn't get. And with that came the pressure of like, I was expected to always have A’s if I was gonna do something, I had to do it the best or don't even do it at all. Like don't waste your time, right? And like I would be the first person in our family to go to college. All these pieces added in was just very clear that like these, my body was an inconvenience. Having EDS was an inconvenience. So mind over matter, just stick with your mind, listen to your body second, which like I think we learn as we get older doesn't actually work.

Heather DeKeyser: <laugh>, it's so nuts that you just said the word inconvenience because it's like your ears were ringing because that's the word that was going through my head and I was about to ask, do you think on some level society also teaches us to push through our pain because we're not supposed to be an inconvenience?

Lena McCain: 100%. Ugh. I'm getting ready to do this presentation on disability justice this summer. And like the thing is, society, and people, myself included, all of us, think disability is something broken and that we're supposed to want to be fixed. We're supposed to want to be unbroken. And like that's a real weird messaging, right? Like, oh, my body is doing what it's always done and it's not, it doesn't fit into the box. So it's inconvenient, it's broken, so I should do the next best thing, which is pretend until I can get it fixed. And like EDS does not have a cure. You are in it. You are in it. Your body has always had it. You just weren't, you weren't on a level with your body on a friendship level enough for it to tell you and then, or maybe you weren't listening and then eventually it gets loud enough and you have to listen and you're with it. There is no cure for it. Yeah. So it's not an inconvenience so much as it's how you've always lived life. Were you listening though? But other people have a lot of opinions about whether it's inconvenient or not.

Heather DeKeyser: So when h h how old were you when you found out you had POTS?

Lena McCain: Yeah, so I didn't, I didn't get diagnosed with POTS until I was in grad school, so —

Heather DeKeyser: So a good number of years later.

Lena McCain: Yeah. I must have been like 23 or 24. Okay. Maybe 25. Yeah.

Heather DeKeyser: Okay. So what is POTS? A lot of people may not be familiar with that either.

Lena McCain: Yeah, you know what, I'm so bad when we come to the names of it, <laugh>, it breaks down, you can look it up, but POTS basically is where your heartbeat increases at an abnormal rate. That's like the way I like to describe it in a very, very simplified way. And so there are a lot of things that happen with it. Um, I will pass out very easily, um, should have been a like huge indicator. When I was young I remember being um, shortly after I had gotten my EDS diagnosis, I was sitting or I was standing in my living room and I sat down on our couch and I stood up and then all of a sudden everything went really fuzzy and I passed out. I slammed my head on our like hard tile floor.

Heather DeKeyser: Oh shit.

Lena McCain: Yeah. It's fucking sucked. I woke up — worst migraine, had a concussion, all this wild stuff. And like that should have been an indicator right then and there like you have EDS, someone should check, but I don't think POTS was really well known at that point. Right. And then as I got older, like I moved to Chicago for undergrad, I passed out on the train, the L, all the time on my way to work I would just be sitting and I would just pass out. I would start talking and I'd get excited. I would pass out. Um, and things like always wanting a lot of salt. Like my mom would always be like, man, you are eating too much salt. You shouldn't eat it. But like salt is one of the biggest things that battles POTS. It's one of the biggest things to help us be regulated and help our heart rate lesson and help us not pass out um, and yet I was there eating salt like no other. I would literally just like have salt licks all the time or pour salt into my hand. I would salt my pizzas. Things that were already salty. Yeah. And I've like never craved sweets. I only craved salt. Like all these things that should have indicated it. But it wasn't until I was in grad school where like I was having a really hard time. Not just like I went to Naropa, so there's a lot of floor seating. So getting up and down off the floor, but then also like concentrating and being able to like write papers. I would just get really lightheaded and and nauseous and I wouldn't quite pass out. I was like, something's not right here.

Heather DeKeyser: Yeah.

Lena McCain: Um, and then that's when I got the diagnosis versus like in Chicago, I would get taken to the ER and every single time I kid you, not every single time I would come out of the ER with this big huge packet of women — Hysterical Women's Syndrome. And that's what they would tell me was that I just had women's like this hysterical women's syndrome that would cause me to pass out. I was feeling too much and so I would pass out but it was all in my head. And it's like, oh no, actually that's not a real thing. And it had these step-by-step instructions of like how not to be so hysterical as a woman. I'm like, that is so archaic. Gosh, that's crazy. Gosh. That that was happening in like 2014, you know?

Heather DeKeyser: Yeah. <laugh>. Oh my — so do these two diagnoses often go together? Or how often does that happen? What's that like?

Lena McCain: Yeah, you know, they do often go together. EDS is like this wild diagnosis that increases the links of different, of other diagnoses, right, to be part of it. Anxiety, autism, all these pieces actually can be part of it, while not everyone who has EDS has POTS, I've also never met a person with EDS who did not have POTS.

Heather DeKeyser: Okay.

Lena McCain: And most people that I meet who have POTS end up getting an EDS diagnosis down the road. So it's like, it's like one or the other. Either EDS is your door opener, or POTS seems to be the door opener,

Heather DeKeyser: But they often do go hand-in-hand.

Lena McCain: 100%. And it's hard to really differentiate them depending on your EDS diagnosis, right? Of like, well you know, you have to sometimes have to change your whole diet, you have to the way you sleep, all these things which can impact you feeling nauseous, which can impact you passing out. And it's really hard to pull apart for someone to be like, oh, we should also be testing for this other thing because while they are similar and they can work, they can be besties so to speak. They are different and they do need different things.

Heather DeKeyser: Okay.

Lena McCain: Yeah.

Heather DeKeyser: You kind of answered this question already as far as when you got your diagnosis specifically with EDS, who did you reach out to for support or, I mean, you, you said or talked about dance and kind of ignoring it or just pushing through it. Maybe that was your escape, but what did you do or who or what did you turn to to feel good, to feel bad, too?

Lena McCain: Yeah. An important thing to know about me, I think the name of my counseling practice kind of gives it away. I obviously have a foot in the door with spirituality. I've worked a lot with different religions and multicultural, um, experiences and, and belief systems. And so for me, I went to a truly nondenominational church, um, when — starting in middle school and I was homeschooled in middle school and then went to an art school in high school. So, and my mom was very like off hands religious, very, um, agnostic if not atheist. And so for me, my nondenominational youth group was really supportive. Not so much in that they, they anyone had what I had. Which like, funny enough now that we're older, there actually are a few people that I'm still connected to that ended up having it. They just didn't get it diagnosed until —

Heather DeKeyser: Oh wow.

Lena McCain: Way later. Yeah. Um, but like they were really supportive just in how we had this regional consultant. Um, so he was like the coordinator of the whole thing and, and he passed away a few years ago. But one of the things that he was really clear about was that the body and the mind are always related. And so if you're gonna support your mind, you also need to support your body. If you're gonna support your body, you need to support your mind. And the opposite is true. If you're gonna abuse your mind, you'll abuse your body. If you're gonna abuse your body, you'll abuse your mind. And so he was really instrumental in like helping me go through different pieces of like how do I actually listen to my body? Because I was a very angry teenager and I was very grandiose and he was like, something is not adding up. In part, he had a degree in counseling so that also probably helped him. Yeah, be like eh, okay, this teen's kind of wild. But you know, I would say with them they were a big support. I did not find much support in my dance community or at school. My mom was really supportive as far as like she worked in the medical field. So like I had access to doctors who, like, EDS wasn't as well known. There aren't the clinics that are around now, um, back then. And so her access was very much like, “Nope, this is what we have. Like I'm not taking, you know, a different answer. You're just gonna get her her needs.: So there was a lot of privilege in that way. At the same time I was also a heavily drug-addicted teen and no one knew the only people that knew were the people in my youth group. My mother didn't know, doctors didn't know dance, didn't know a heavily drug specific teen. And so I think for me that was how I managed all of that pain. That's how I managed, you know, the fact that I didn't have people to support me and I wasn't really close to my siblings. So the one other person I knew that had it, I didn't even really get to talk to about it.

Heather DeKeyser: Yeah. So it sounds like you found ways to hide in multiple areas of life being a drug addicted teen and no one knew. It's like you were using that to manage also hiding that.

Lena McCain: Yeah. 100%. 100%.

Heather DeKeyser: Is that hindsight looking back or did you know back then “using these drugs, being a drug-addicted teen, it is to cope with my disability”?

Lena McCain: I think, I think it's more the hindsight. Okay. You know, I did a lot of processing when I was young and it was about the perfectionism and anxiety around it. Okay. That was really clear. But the link to why did that perfectionism and anxiety exist outside of the pressure that I was feeling was never, was never founded. Like no one explored that with me in part because no one really knew, you know, I would fill out forms and I would not put down that I had EDS because I didn't want it to exclude me for things. It wasn't until the last, so in my youth group there was a lot of leadership opportunities and the last camp that I led was the first time that I put down I had EDS and they were like baffled because I would just go in and I would like strip the beds of any padding and just sleep on the hardwood. I would, you know, when I would go to parties as a teenager, like I would drink copious amounts of water because carbonation would impact my pain and my joints. And so I was always able to just manage things.  Another thing that EDS does that was like really popular as a kid is like I have a high alcohol tolerance, so like, and substance tolerance in general. So people just didn't know unless I told them and I didn't tell them until I was in my twenties, really.

Heather DeKeyser: You ever worried that you wouldn't connect with friends or peers because no one else really had this or knew that they had it, anyway?

Lena McCain: I think like in hindsight totally. That's where part of the grandiosity came from. But not like cognitively in the moment. Yeah. I mean I was an anxious teenager. I had social anxiety and I was homeschooled in middle school a very, a very important time to learn social like cues and skills. And then I had this change in heart and went into an art school with people who had been around other people their age, their whole life. Like that wasn't me. So there was a lot of like grandiosity just to try and learn social cues and, and I imagine being neurodiverse is often linked with also having EDS. Okay. Like so that, that had to be a part of it. Um, I'm gifted, which I didn't even know was a thing until, you know, partway through high school of like yeah it was easy for me to just do things in that way and that was giftedness, right? Like these pieces in hindsight kind of made this beautiful, perfect equation for me to not have to second guess things but also at the same time always have a step or a solution in case that thought even entered my mind.

Heather DeKeyser: What would you say are some of like the highs of your journey versus what are some of the lows that you've experienced?

Lena McCain: Yeah. Highs of my journey. I would say the highs are, the friends that I have now are primarily disabled. Do they all have EDS? No. They have different types of disabilities. Um, but the highs are the community that I've been able to cultivate because of it. And there's like this unique, there's this very vulnerable and intense grieving relationship that you develop with your body. I think when you have a diagnosis of EDS that and any disability, but the high is you learn to know your body better than most people will ever learn in their lifetime. And like that is something I'm like very grateful for. I know when my body is tired and it's telling me months in advance before it's gonna have a big breakdown. I know when I feel things I feel them intensely. And it's not just because I'm empathetic. It's because of my relationship with my body. At the same time, some of the lows are, I had to give up some pretty big dreams. Like I had this whole dream of being this professional dancer and, and going after in the arts and, and the reality is is like one my body couldn't take it. There's no way. Yeah. Two, like I need to always be thinking about finances. Our world is not set up for disabled people to live a fulfilling life. So having to pick a career that would, that not only was I interested in and, and would be passionate about, but also was going to like foot the bills was a big deal. And always having, you know, there was a time where I was in my wheelchair for nine months and the doctors told me I would never ever walk again.

Heather DeKeyser: How old were you?

Lena McCain: I was an undergrad. I was, it was in my senior year, end of junior year into senior year of undergrad. So I would've been like 20. Yeah. And they were like, “you'll never walk again.” You've got like six, seven weeks soak it up now. And I literally remember I got off the brown line, um, in Chicago and it was raining and it was one of the most inaccessible um, stops in the L train system and it's raining and it's like all this like decrepit wood and there's piles of water and I have this big leg brace on, just got out of this doctor's appointment and I go to go down the stairs and I slip and then I fall in this big puddle of Chicago probably like urine and grime and water and was just sobbing and these people are around trying to like help me and I'm just like, “stay away from me.” I can't. And then got myself home and got into this like depressive state for like, I would say a week, maybe two weeks. And my best friend who's still my best friend now, they showed up and were like, and there, they're very disabled. Um, and they were just like, “get your shit together. This is not, if you can't walk who fucking cares? Like I have a crutch, I use a walker. Like get your shit together. This is not it. This is not look good on you.” And like that was kind of the shift. But that level of like, wow the world will see me differently and I won't be able to stop them. Like that's a pretty big low.

Heather DeKeyser: Yeah.

Lena McCain: You know, and like for me it shifted. I ended up not being in a wheelchair forever and sometimes I still use it, sometimes I don't. And I'm sure one day it will be more permanent but I wouldn't consider that a high because it was just a shift of like, oh I had to do this intense grieving of like who I thought I was, to be able to even be willing to like who I actually am.

Heather DeKeyser: What does the progression of EDS and POTS look like? Like are there certain things that you watch out for as far as how your body is functioning or is it just kind of this gradual decline? What is the progression like?

Lena McCain: So EDS is different for everybody. That's something. So I run an EDS teen support group and we talk about this all the time. No one with EDS has the same type of EDS, okay, the same symptoms. We have similar ones but no diagnosis is the same, which also means that no progression will be the same. Okay. Um, and there are far more severe EDS um, diagnoses. Like vascular is, is really um, can often be very fatal. Okay. Right. So there are more extreme levels of EDS. For me, what my progression has looked like is being very, very flexible up until about two years ago. And while I can still be flexible, I have, I have a lot more like rigidity. Okay. Like I have a hard time being able to bend down and get up. Um, my sublaxing in some ways has really increased and in other ways decreased. So when I was younger it was always my lower back, my SI joints, my sciatica that would um, sublax and then I would you know, have to spend hours trying to popping them back in. Same with my ribcage. Now that I'm older, what I find is that my whole back doesn't sublax it actually will start to dislocate. My ribs will be in different places.

Heather DeKeyser: Ouch.

Lena McCain: And when I sleep every night that I sleep, my shoulders dislocate and I wake up and I have to pop them back in. And they used to only sublax. Um, a lot of people with HEDS when they're younger, they're very, very flexible, well into their twenties, even thirties. And then what we find is that they aren't so flexible, they actually tighten more.

Heather DeKeyser: Okay.

Lena McCain: Which then means that people who weren't diagnosed when they were younger will have a harder time being diagnosed as they're older because you don't score the same as you would normally on the tests that would give you HEDS versus all the other ones, um, can be genetically tested.

Heather DeKeyser: So is it just that the tests for it have not evolved over time? Or like what, what's up with that?

Lena McCain: I think so in some ways totally. Because it's new-ish, right? Like I was part of my sister was like, I think one of the first waves of like, oh yeah, things are not, there's a diagnosis for it. And then for me, my generation, it was kind of like, oh this isn't as rare as we thought and now we're in this place of like actually like it's like something like 1 in 2000, 1 in 3000 people can have it. And we're just finding that that number just increases, right? Like more and more people have it and we have social media that allows people to connect and we have organizations. I mean the Ehlers Danlos Society in the UK is like the leading organization for it and it's everywhere. And they have how-to’s for educating your doctors. Like right now we're in this like weird poll because it is becoming so common. I mean we have EDS clinics like a team clinic here in Denver —

Heather DeKeyser: Wow.

Lena McCain: For it.

Heather DeKeyser: Right.

Lena McCain: It's so common. And like the idea is that any doctor can actually test for it but, and like the newer generations are like, “yeah I can test for it. Let's get on the ball for it.” Right. But older doctors aren't. They're like, oh I can't do it. Only a geneticist can. Only Mayo can, only Children's can. And we're in this like unique place of like Yeah. The tests. The tests have been updated and we don't, not everyone's educated on the fact that they're updated or that there are ways to access it or questions to ask. You know, if you're 50, like your body still ages, you're never gonna be as flexible as you were before. Right. That doesn't change just because you have EDS. Okay. And so like yeah your body is less flexible but is it less flexible in certain ways? Maybe not in all ways. And like why didn't someone ask what you were able to do when you were a kid? Yeah. Like it is, most people cannot touch their thumb to their wrist. Right. Most people can't turn their thumb around. Most people don't have extreme pain when they were writing as a child. So why aren't we asking some of those questions? It's just like a basic checkup.

Heather DeKeyser: I feel like doctors in general aren't always great about asking what's your life been like?

Lena McCain: Mm-hmm.

Heather DeKeyser: — what have you been through in life? What have some of your experiences been?

Lena McCain: Mm-hmm.

Heather DeKeyser — I mean the link from or between illness and trauma for example, or illness and emotional stuff that hasn't been dealt with and how your body holds onto it. I mean —

Lena McCain: Yeah.

Heather DeKeyser: That means that it's, if it's in your body, like your cells are holding onto it too.

Lena McCain: Yeah.

Heather DeKeyser: And how does that impact how your cells grow or divide or don't or

Lena McCain: Yeah. I a hundred percent agree and we're still stuck in this like really weird thing of like it's all in your head and it's like feelings don't exist in your brain, they exist in your body. That's number one. So it's not all in our head. Number two, like thoughts and feelings are different. Like so can you at least distinguish between that?

Heather DeKeyser: Mm-hmm.

Lena McCain: — and like pain is not a feeling and it's not a thought, it's a sensation. And we don't even talk about those differences. So like CBT is not gonna help me with the fact that I feel pain all the time. Right. A pain scale from one to 10 is not gonna help me because I'm always at an eight. So why don't you ask me like what's my baseline? If my baseline is 8 then that means probably by the time I get to 15 I should go to an ER even if I don't think I should. Right. Right. And like that's not in my head. No amount of breathing exercises, no amount of accommodations, no amount of diet change or weight loss. Like that's not the thought that like this is painful could be managed in my head but like my body is telling me that I'm not okay. And like our medical field is so mind heavy. Mm-hmm <affirmative> that which is weird cuz it's supposed to help our body and it doesn't even know how to communicate with it. And yet how little do we actually know about the mind? Yeah.

Heather DeKeyser: 4% right? Four or 5%?, so something low,

Lena McCain: Super low. Yeah. Super low. And the minds of trickster is a little bit of an asshole because it's the only part of the body that thinks it isn't part of the body.

Heather DeKeyser: Okay. Say more about that ‘cause that sounds really powerful and we need to dive in just a little bit more.

Lena McCain: Yeah. So as a therapist, this is my jam. Yeah. This is what I always talk about, right? Is I actually imagine the body and the mind on a, on like a weight scale and the mind boom is heavy. It loves the spotlight. It's very lucky that the majority of the body is like “meh, you have the spotlight, mind over matter.” It calls the shots until the body has something it wants to share, and then the body will slam the mind back and say “No, listen to me.” Anytime we have a big feeling, anytime we have a panic attack, anytime that we sleep and we dream anytime that we're sick, big pains, all these things, the body will slam itself in front and say, “listen to me.” And it will not let the mind back until we address it. That's why we get sick so often and why we feel it so intensely, right? Because the body needs us to slow down and then once it gets its needs met it will, it will cater. It'll play the brain’s game and let the brain come back, ‘cause the brain loves to be the extrovert, right? But here's the thing, the mind, the brain is still part of the body and it's the only part of the body that has a really hard time accepting that it's part of the body. ‘Cause if it does, it has to slow down and be willing to give up the spotlight willingly. And it has never been taught how to do that. Right? Not once. And so part of having I think a disability or a diagnosis of any kind is we actually from that point forward start to teach the brain something it's never been taught before, which is it doesn't run the show because it cannot exist without the body, right? The body can exist without the mind. We see it all the time. But the mind cannot exist without the body. This isn't Futurama, it cannot exist without the body. And it never actually has to think about that. That's a privilege until you have a diagnosis of some kind.

Heather DeKeyser: Wow. I'm like mind <laugh>, mind, mind blown. Right now I'm feeling all sorts of things in my body. <laugh> and my mind is blown. Which one's taken the wheel?

Lena McCain: Mm-hmm.

Heather DeKeyser: I don't know.

Lena McCain: Mm-hmm.

Heather DeKeyser: Um, okay, so we talked about relationship between mind and body. Speaking of relationships, how has EDS and POTS just disability in general affected your relationships? Whether it's friends, family, partner? Yeah.

Lena McCain: Whew. I was thinking about this a lot on my way over especially, I just today was teaching a workshop on gender identity and expression and sexual orientation and romantic orientation and just like, yeah, how has my EDS, POTS, disability as a whole impacted that? I think when I was younger, uh, it, it did impact friendships. I mean you asked earlier like, did I let people know? No, I didn't let people know. So my mom knew people from my church knew. My sister knew. I didn't even tell my brother and my other sister until I was in my twenties. Most people didn't know. And it was really confusing Right. Because relationship wise it was like I was always kind of keeping a secret and like I was a substance-addicted teen and which really is a intense and negative way of saying I was a self-harming teen.

Heather DeKeyser: Okay.

Lena McCain: And I also self-harm through cutting. Um, and other, other ways like being a compulsive liar and, and most people don't think of compulsive lying as a self-harm. Right, that's true. But it is. Yeah. It full-heartedly is. And so I was so good at not telling people when my body needed things and, and in romantic relationships, I mean talk about being a teen and like already being pressured to like you be cisgendered and you be heterosexual and all these things and you'd be interested in sex and all this stuff. Like that was happening alongside my identity development. And then disability development of like, oh it's painful to make out with people because my jaw is way more flexible than other people's jaw. My tongue can extend out further than other people's tongues. When people press up against me that pushes my hips out of place and there was no contact, no one was willing to talk to me or even had the idea to talk about those things with me. And so with friends, I also didn't like to hug them because it caused pain. It could sub lack something. My, I have a high pain tolerance but like people brushing up my against my skin, they're hair like my dogs now, like their fur can get stuck in my skin because of my EDS. And so I didn't like to be touched and people would think I would, I was cold that I had like, I had this issue like almost like I turned my nose up of how people kept themselves when really it was like my disability was there and it made it painful to connect. So physical touch wasn't part of my relationships with people. It made me question dating people. Like I would always think cause I wasn't telling them right. That I was disabled. And I was like, well when I do tell them one, will they be mad at me? Mm-hmm, and two, will they leave me? And there have been friends that have left, there have been partners that have left now. I mean I don't really talk to my family much but for different reasons. Um, but that was like hard for them to understand. And then now like there's been this kind of big trajectory of like my identity I would say I'm gray asexual. So while I can have some romantic interest and expression, more often than not I don't towards people.

Heather DeKeyser: Okay.

Lena McCain: And yet I do have a partner of eight years who is beyond wonderful and just like really, really comprehends what disability is and like how that impacts relationships and, and how that can and, and can't affect our, our sexual relationship. You know? So there's like this huge spectrum of which I don't think, I don't think if I was, if I was more able-bodied, I don't think my gender would've changed and I don't think my sexual orientation would've changed. But I think my romantic expression and my expression of just intimacy within any type of relationship would be a whole different ballgame because I'm super extroverted and yet I'm so introverted when it comes to anything having to do with my body and in relationships down to hugging or joking around or moving and things like that. Because I have to always constantly think about will this impact me down the road? Will this build up to a flare up or do I have enough spoons to manage it today?

Heather DeKeyser: So is it more that that's a self-protective mechanism for you?

Lena McCain: Mmm, I think it can be. Okay. I think so. And and just listening to my body of like, yeah, it doesn't like a lot of things. Mm-hmm, and my relation, if I didn't have my disability, I don't think I would need to have such an in-depth relationship with my body. Okay. And so I wouldn't be so fine-tuned to it being like, no, no thank you. Absolutely not. It wouldn't need me to.

Heather DeKeyser: Right.  What do you think you've learned about you? What has your disability taken from you? What might it have given you?

Lena McCain: I think Hmm. What has it taken? I don't think, I try not to think about it in that way, but I do think it's an important part of it. I think it's taken away. I said a little bit earlier, some pretty big dreams, not just careerwise, but I think about like, I don't want kids one on a political front, but also like I watched my sister go through having a child and that was not fun.

Heather DeKeyser: Mm-hmm.

Lena McCain: Um, I can't imagine having a kid and my mom not being around doing the work that she does, um, to keep my body together. ‘Cause she really, she knew how to keep my sister's body together during childbirth and like, I just don't know if that would, would be a, a luxury I could have. Yeah. Um, so I think it's taken some of those pieces. It's also taken away my optimism. I am so far from an optimist, I am much more of a pessimist. I'm not even a realist. I'm a pessimist. And my disability has taken that because you go from being this like wondrous person that I can do anything, which like, it's true, you can do anything, but you can't do everything.

Heather DeKeyser: Mm- hmm.

Lena McCain: And a lot of that, everything isn't even worth the pain and the suffering to get to it. Right. So it's taken a lot of those pieces. At the same time, it has gifted me a chosen family. I would've, I guarantee I would've never slowed down and met by any means because my ability would've been in the forefront versus my disability.

Heather DeKeyser: Right.

Lena McCain: It's given me my sexual orientation and romantic expression. It's given me, it's given me the career that I have. I would've gone off and tried to be a dancer and something in the art field or, or really dived into this productivity of being a lawyer or something really intense. And like, while being a therapist by any means is, is not all like rainbows and butterflies.

Heather DeKeyser: Right.

Lena McCain: The ability that I can have, you know, a six figure business that works with teenagers and, and know that like identity and values is the most important thing and work with them from that point. Huge knowing that I can have groups for teens who have diagnoses like me huge. Like my disability gave me my values and my belief systems and my identities. Which at the end of the day, I think it's really all we need to have a fulfilling life.

Heather DeKeyser: Yeah. Would it be okay if we switch to sex and intimacy? Yeah.

Lena McCain: Let's do it.

Heather DeKeyser: Okay. Nice. How has this area of your life been the most affected?

Lena McCain: Yeah. Huge. I think there's a tug of war between wanting to be super sexually active, especially when I was younger and like feeling like that was a need, and now being like if I never had sex again, I probably wouldn't blink twice, it's never like really in the forefront. There's also just a lot of risks that come with being sexually active. I mean, you are a greater chance of prolapsing, um, your hips displacing like sex can be an exceptionally painful experience within relationships.And like chances are you need a lot of accommodation, swings, braces, they'll write like, God forbid if I ever try to have sex on a regular mattress, that would be my nightmare. I probably wouldn't be able to walk afterwards. Yeah. And not in a good way —

Heather DeKeyser: Right.

Lena McCain: — like really there's a lot of prep that has to go into being able to have a pleasurable experience. And I think with myself, like when I was younger, I would weigh that, is it worth the pleasure or isn't it? Which is like a really hard question to ask your body. Like, is your, is your short-term pleasure worth the long-term flare up you're gonna give, and your body supposed to be like, yeah or no. It's like, no, I want both actually. Thank you. Right. And like having to figure out how to address that and then talk about it. God forbid you have to talk about it with people. What if you want to just have like a one night stand or you want to masturbate, right? Like all these pieces, you're, it's always a currency exchange. There's no relationship or sexual experience that is not a currency exchange and that's a hard pill to swallow.

Heather DeKeyser: And is that educating yourself personal experience and kind of trial and error type stuff or kind of all, all of the above from what you've gone through?

Lena McCain: I think… there's a lot more resources out now in vocabulary around it. And because I do sex education, like there is that, that piece of like learning that's there. But most of it for me has been through trial and error and lived experience because it didn't exist. I mean, sex education is already still taboo in 2023. Yeah. Let alone being disabled and having a sex life. America is not quite ready for that conversation.

Heather DeKeyser: <laugh>. We're trying, we're trying, we're trying to get it there. We're out here.

Lena McCain: We're out here doing the work. <laugh>.

Heather DeKeyser: So in your relationships, like how have partners responded or received this about you? Like the ones that you have shared it with?

Lena McCain: Sure. Yeah. So, you know, in some ways there's like the fetishizing of it because I am very flexible. I can do things that other people can't and like that didn't feel good. So there was that response. Okay. Um, you know, I've had some really beautiful relationships with people who like disability was the first thought in their mind. You know, of course I experimented with like, do I tell people right away? Of course now I'm not gonna tell them till later on. And then the people I told right away and, and some of those people that I've had relationships really in depth relationships, whether like on a romantic level or just, you know, a sexual level. Their response has been very disability-first.

Heather DeKeyser: Okay.

Lena McCain: I think most of the time, um, where it isn't fetishizing and it is like asking questions like does this hurt or can I do it a different way? Or how is this going? Um, my partner now is just very from the start and I think because he has a couple of disabled people in his family.

Heather DeKeyser: Okay.

Lena McCain: Um, and he now has a disability, but he didn't, when we um, first started dating eight years ago, he is very good at like one, he just knows, like he learned from trial and error and being like observant of like, these are the things that are gonna impact it. So has work been particularly stressful? Has she worked more hours than usual? Um, has she been showering regularly because that's an indicator I'm probably in a flare up if I'm not showering like every day or every other day.

Heather DeKeyser: Okay.

Lena McCain: Has she been getting ready, like just being really cognizant of like there are a lot of things that ex uh, affect my energy level and if I'm not doing those things, I'm probably in a flare up or about to be in a flare up. So he isn't going to push things. Or if I do wanna be intimate, he will ask questions like, is our bed going to be okay? Or do we need to move to a harder surface? What kind of things do we need in order for this to be an equitable, pleasurable experience for us. Like he is so good at communicating and most people are not that good at communicating, you know? So I think on the flip side, there are the people who just like make assumptions and that's been a large majority of the response that I've gotten is like assumptions of what disability is, what I do, and don't find pleasurable. And whether or not they even care that's in the like in the equation for them.

Heather DeKeyser: Well I think a lot of people too just assume that disabled people don't want sex. Yeah. Or just can't have sex. Can't be sexual.

Lena McCain: Totally.

Heather DeKeyser: And so they don't even start a conversation because in quotation marks, you guys can't see this, but what's the point? Right. There's just an assumption made that like, well they can't, so not even gonna go there.

Lena McCain: Right. Which is like wild, right? Like I find this to be true and this is how I open all sexual conversations and workshops that I do. Every person is a sexual being full stop. There's a lot of branches that can go off into, like I said, I'm gray asexual, so I'm like I'm not that attracted to people, right. I'm not willing to be that intimate with people and that does not mean I'm not a sexual being.

Heather DeKeyser: Right.

Lena McCain: Like sexual, we are sexual beings and so we all have different relationships and disabled people are sexual beings. Like it does not cancel it out. And some of them are super sexual, right? They're super romantic and that's awesome and people are terrified about that idea. Yes. That a disabled person would not only enjoy it but want it, maybe even demand it as part of their relationships that freaks people out.

Heather DeKeyser: You and your partner sound very in tune with one another. And specifically in like your partner in tune with you has that, like was there a process in order to get that way? Um, I know you mentioned that there are a few family members who have disabilities —

Lena McCain: Mm-hmm.

Heather DeKeyser: — now recently he has disability. Like how has that process been of getting in tune with one another?

Lena McCain: Yeah, so I think for me, like knowing my sister and I do not have a great relationship now, but we did when I was younger. Um, particularly like late high school. Early college and, and I moved in with her right before going to college ‘cause she lived in the area that I was going to college. And one of the things that I learned about her then marriage was how accommodating sexual activity can be. And she was really open about talking about it. So she was kind of my first introduction of like there are things that are out there that just make it possible. Yeah. Like, like I said a little bit earlier, like swings, like most people don't even want to talk about that and it's like, but they're there. And do you know how supportive a swing is for your hips versus a bed? Are you kidding me? Do you know how much more supportive it is? And more in control? A person can be in a swing versus a bed.

Heather DeKeyser: Mmhmm.

Lena McCain: — like huge using toys knowing like with EDS our skin reacts to a lot of POTS, allergies like crazy, right?

Heather DeKeyser: Mm-hmm.

Lena McCain: So knowing that there are lubricants and toys and protection out there like that are made just for us huge. And my sister was the introduction to that. She was very open about it and not in like a weird way, but like a, it's important to no way.

Heather DeKeyser: Mm-hmm. <affirmative>, right? I didn't meet my partner until grad school partway through grad school and, and for him, I at that point I was really open about my disability like and having EDS, I think I had met him right around the time I was getting diagnosed for POTS.

Heather DeKeyser: Okay.

Lena McCain: But for him it was something like our first date lasted like 12 hours and we told each other everything. I learned all about his siblings who had disabilities, he learned about me and my family and disabilities and like he, you know, for him was never like, well he didn't like sit down and was like, “well how does this work?”

Heather DeKeyser: Right.

Lena McCain: He did make some assumptions and some of most of them worked, some of them didn't. Um, but he, like the thing I admire about him is like, well he is an anxious person. His shame when it comes to the people he cares about does not exist. So if you're in his like inner circle and you're in his ride or die, shame is not part of the equation. So if it makes his relationship with you better, he will just do it. He will ask it. He will say the thing that comes out first things first. Like he will do whatever it is to make sure that the people in his ride or die relationships are taken care of. Wow. And so he didn't have shame in asking, he didn't have shame in being vulnerable about being confused. He didn't have shame in being sad about things that if he caused to hurt and pain towards me. Like he didn't have shame around those. He had curiosity and communication. And I think like that's the thing that just made it evolve more and more over time is like that curiosity and that communication and vulnerability he just always brings in to any part of our relationship. And like when you meet him, he is not that type of person. You'd be like, “who? What are you even talking about?” Like people who will listen to this and know him and be like, “okay, I don't know about that” but that probably means you're not in his ride or die circle. You're not me. Right. You're not his person. And so he does always think about those and he will, he's the first to take accountability. Like “I made this assumption and we're about to try it and actually I'm wondering if maybe that's not the right choice” or, “you know, I've been noticing that we've been having a lot more like sexual friction and it hasn't been as easy. So I took the initiative of going out and looking at these different lubricants and I checked all the ingredients, you're not allergic to them. And I read some articles and some other disabled people say that this might be the way to go.” Right? Like he's just so in tune with those pieces and it's because he takes the shame out of the equation, which is hard when you're talking about intimacy and sexual relationships and then identities on top of that.

Heather DeKeyser: Where can people with EDS find sex toys or lubricants? Like are there specific websites or specific brands of toys or is it just preference and trying and figure out which ones you like?

Lena McCain: I think there are a lot of preferences. You know, I am a diehard TikTok person. Like I will be so sad if TikTok ever gets taken away because there are so many people with EDS who are willing to share their knowledge and that's where I've gained my knowledge on like things to try and, and new brands to go through. And there are brands who are specific about accessibility.

Heather DeKeyser: Mm-hmm.

Lena McCain: I'm terrible at recalling them. But like I would say if you're noticing on your social media that you don't actually follow that many disabled people, like follow them because they also have partnership deals with places that put disability at the forefront because we can't, we can't have healthy, exciting, pleasurable experiences with our sexuality if we don't even put disability up front. Because one in four adults will be disabled by between 20 and 60. And if you are fortunate to live your whole life, you will be disabled by the time you're old. Every person becomes disabled. 1 in 6 children and youth are disabled. And so it's like damn, almost everyone's disabled by those standards, right?

Heather DeKeyser: Yeah.

Lena McCain: So —

Heather DeKeyser: I don't think a lot of people think about that.

Lena McCain: No, not even. Not even the kids,

Heather DeKeyser: Especially the disabilities you can't see.

Lena McCain: 100. EDS is considered an invisible disability for most of us. Right. Like people look at me and wouldn't know that I have it unless I'm in my wheelchair or I'm in a brace and like God forbid I stand up in my wheelchair to pick something off a shelf, people would freak out. Right

Heather DeKeyser: Because like you don't need that wheelchair or what?

Lena McCain: Yeah, exactly. Exactly. Oh my God, so many between me and so many um, invisibly disabled people that I know like will like park in our handicap spot. Right. But we don't have anything that shows that we're disabled. We've come out to notes of people telling us to go to hell because we took a spot from a disabled person. Or like I've gone in and I've taken like a motorized wheelchair in a grocery store because I'm not gonna be able to shop without it. And the amount of like nasty comments people come up to me and tell me that like I'm a terrible person, I'm a bitch. All these things because I stood up to get outta my wheelchair, and I'm not old-looking, not yet. And all intents and purposes I look like an able-bodied person.

Heather DeKeyser: Hmm. Yeah.

Lena McCain: But all of this to say is like we can't have, you know, to go back to like where can we find products and stuff? Like every product should be accessible and if it isn't and like the brand doesn't offer alternatives, then there's actually a problem with that brand.

Heather DeKeyser: Mmhmm.

Lena McCain: — like that's not okay because everyone is every human's a sexual being, right? Every human deserves access to those pieces.

Heather DeKeyser: Absolutely. Mm-hmm, I talk about this all the time in my practice, with the populations that I work with and I actually work with people — mostly with physical disabilities ‘cause they seek me out.

Lena McCain: Mm-hmm.

Heather DeKeyser: — but in like either it was an accident and they have to redefine themselves sexually, which through disability and illness you have to do during different parts of your journey anyway.

Lena McCain: Mm-hmm.

Heather DeKeyser: — because at like the beginning of your journey when you're younger, your body might be more or less able to do things than 10 years in.

Lena McCain: Mm-hmm.

Heather DeKeyser: —  or, and just helping people feel empowered of like you can still be sexual. It might mean finding different parts of your body to use during sex that you had never thought about before. Erogenous zones, like all the things!

Lena McCain: Mm-hmm.

Heather DeKeyser: — and that's super cool just to watch people light up about like “I get to have this as part of my life?”

Lena McCain: Yeah.

Heather DeKeyser: But all I've ever heard is “it'll never happen.”

Lena McCain: Yeah.

Heather DeKeyser: That just breaks my heart

Lena McCain: 100%, because it's an identity, it's a part of us. Right. We have thousands of identities and like that identity right there can get like pushed to the back of the line.

Heather DeKeyser: Yeah.

Lena McCain: And it doesn't even know why.

Heather DeKeyser: Exactly.

Lena McCain: It has no idea why. ‘Cause it's still there and it's still as big as ever.

Heather DeKeyser: Mm-hmm. And then it just feels like unloved and uncared for when really it deserves to have a chance in like the “throne” so to speak.

Heather DeKeyser: Mm-hmm

Lena McCain: More than once.

Heather DeKeyser: Yes.

Lena McCain: [laughter]

Heather DeKeyser: What do you wish people knew about EDS, POTS, both? others who are going through it and maybe even caregivers and then just the general population. I know that's a lot into one.

Lena McCain: Yeah, that's a lot into one. I think. Let's see if I can workshop it in the moment. Mm. Your disability should define you, but your disability isn't the end in that definition.

Heather DeKeyser: Okay. So I've never heard that before. Your disability should define you.

Lena McCain: Yeah. I think when people say “your disability shouldn't define you,” what we're saying is like your body shouldn't have as equal of stakes in the game as your mind does.

Heather DeKeyser: Mmmm.

Lena McCain: But it should define you. Your disability is you, your body is you. It should define all the things that we do, what we eat, what we like, what we don't like, who's in our lives. It should be almost like one of the biggest central points to our value and belief system. So it should define you and that's not a bad thing. It's actually gonna challenge you at your edges. It's not the end of the world to be disabled. We will all be disabled. It's not the end of the world. What it just means is like you will be challenged, you will push up against your edges for what you thought you knew about yourself and you get to uncover something new and it won't be easy. It's never easy.

Heather DeKeyser: Right.

Lena McCain: It'll be emotional, it'll be painful, it'll be hard, it'll be scary. But those things actually don't have to be bad things. Those can be as neutral or as negative or as positive as you want them to be. And the people who get to come into our life and experience that with us, like that's a privilege and it should be treated as such that it's a privilege that you get to see those parts of us and watch us evolve in that. Because one day you will be there too.

Heather DeKeyser: Right.

Lena McCain: And so how lucky are you to now have lived experience of someone that loved and trust you in return to show you a bit of a blueprint?

Heather DeKeyser: I mean now you're talking about the depths of love.

Lena McCain: Mm-hmm, the big one.

Heather DeKeyser: Mm-hmm. What, what a feedback do you have for caregivers?

Lena McCain: Hmm. What feedback do I have for caregivers? The way you think you're important is, is probably not how you're important in the way that you don't even know you are the most important.

Heather DeKeyser: I mean you're like getting deep on us now, like say a little bit more about that one.

Lena McCain: I mean the reality is is like caregivers are important. The like nitty gritty. Some of us need you to help us do our day-to-day things, but like the little conversations, the challenge, the not leaving when shit gets hard, the not abusing us. That means that like now you're in our inner circle and like whether you intended to be or not, you're in there and like you will never know what that relationship means because that could be the difference between us knowing how to share with family members and show up a certain way. It means me, the difference between me being able to live a day or not live a day.

Heather DeKeyser: Mm-hmm.

Lena McCain: It means me now having the security with you that I could actually have a romantic relationship because I felt safe and brave with you. That if someone can still show up day after day, that means someone could love me in a really romantic way too. So like yeah, you'll probably think you're helping me in us in our every day, which is true. But like that's not the big shit. The big shit is like you show up and you don't miss, you show up and you treat us like humans and you talk to us and you let us laugh and cry and be vulnerable and you don't abuse us. Like if we can get to all of those, you're now the foundation for every relationship we will have going forward. And that's, that's not something to take lightly.

Heather DeKeyser: No. Something that I hear from caregivers is like I can't share with my loved one my bad days because I have to be strong for them. I can't show them weakness, I need to like keep it all together all of the time. What do you say to that?

Lena McCain: I would say you have a lot of work to do on your white supremacy, um, because there's no right or wrong way. And in fact when we have that mentality, what we've then done is de-centered the true like essence of what's happening. Right? Like we've now centered ourselves and say well I have to be strong when like that person didn't ask you to be strong.

Heather DeKeyser: Right.

Lena McCain: They just asked you to show up and for some of us we just asked you to show up and do your job. Like maybe we don't have an intimate relationship with you. Maybe you're just our parent and we have the parent pieces too, right? Like or you're our partner and like I didn't ask you to be my caregiver, but that's part of it.

Heather DeKeyser: Yep.

Lena McCain: So now you're my caregiver and you're my partner. I didn't ask you to be strong, I just asked you to be you. And so I would say you have to do some personal work of like did someone actually ask you to do that or is that a limitation you put on yourself?

Heather DeKeyser: Mm-hmm

Lena McCain: And if it is, it doesn't mean that you did anything wrong. It means you're trying to protect yourself. And so can you look at the person that you're caregiving for? Are you willing to do the work with them? Allow them to be part of the conversation on how that you don't always have to be strong.

Heather DeKeyser: It reminds me of something that I read in a book and it was like we can keep things from people because we don't wanna hurt them and call that compassion. But it's actually the opposite.

Lena McCain: Yeah, it sure is. ‘Cause you can't have compassion without community.

Heather DeKeyser: And compassion is an action, not a withholding.

Lena McCain: Mm-hmm. I think a lot about the visual of an infinity symbol. And if we look at the two loops, one is individual and one is community. And we do a lot in the individual loop and especially as caregivers. Caregivers will do a lot in the individual loop. And what they will do is the like start to touch community. Well when I'm taking care of when I'm giving —

Heather DeKeyser: Mmmhmm.

Lena McCain: —  that's when I'm in community. But when it's just me, I'm by myself and like it doesn't work. You can't have a loop, an infinity loop unless both loops are running and they're flowing freely. Right. So we need to move out of that and be vulnerable enough ourselves. Right. To push into community and include the person. Because just because you're a caregiver, 1 —  we all know that's not your only identity to that person —

Heather DeKeyser: Right. Right.

Lena McCain: — in your relationship. But 2, relationships are a two-way street. And so if you are just holding onto this one part, you're not showing up, you're doing a disservice to that person who believes that you're showing up for them as more than just their caregiver. So don't box them that way, like talk to them. I think about it with my partner. He is my caregiver and he is my lover. He's not my best friend. He's a good friend, he’s part of my family at this point. Right. And I am to him, his disabilities have come later. If I had closed off all those pieces and I was just his caregiver one, I just took away his, the thing he consented to, he didn't consent to a relationship with me as a caregiver.

Heather DeKeyser: Mm-hmm.

Lena McCain: He consented to a relationship with me as a partner. So I just took that away from him and now I'm hiding things from him. I'm saying, well I don't wanna burden him. I'm treating him like he's not a person of equality to me an equitable relationship. We can't do that to people who are disabled because life's already inequitable.

Heather DeKeyser: Where does your partner go for support? Outside of you? Mm-hmm. If and when he needs it.

Lena McCain: Mm. He has a really core group of friends that he's had since he was very little.

Heather DeKeyser: Mm-hmm.

Lena McCain: So I would say he turns there but he also reaches out to my community. You know, my best friends are my chosen family and he's very aware of that. So when he needs support that his friends don't quite get or that maybe he doesn't even want from me, he reaches out to them, they're gonna have a lot more wisdom because they see me not only on in a way that he does, but also in a very different way. ‘Cause the chances are they were there before.

Heather DeKeyser: Mm-hmm.

Lena McCain: I got my diagnosis when I got it and afterwards. Right. So they have more knowledge than he ever will. And I mean he's not a big therapy person, which is funny given that I'm a therapist, but he does know where to go when he, it really does get tough. He will go to support groups, he will go to doctors, like I said, if it means our relationship will be better, he will take the shame out of it without a second thought. Mm-hmm. <affirmative>. So in some ways he is not a great model in that way because he's gonna prioritize that and not everyone can do that. I can't do that. I don't know how to take the shame out. Yeah. Right. When I show up for him. And so I think about like, where do I turn in those? Like sometimes it's really isolating and we feel like we don't have people to turn to even though we realistically do. And part of that then is being radically self-compassionate, being really gentle with yourself and reminding yourself that you will not be perfect at any point in time in this. And that doesn't make you a bad person. You're doing the best you can with what you know and you just may not know enough yet.

Heather DeKeyser: Yeah. So there are a lot of people who come to you for support with the work that you do. Yeah. So for the last little bit here, talk a little bit about that work groups you run, populations you work with and how it's worked into your journey or how it's helped or shaped.

Lena McCain: Yeah, so I work with tweens, teens and 20 somethings. I will work with people outside that age range, but I really have to make sure we're the right fit for that. Specialty is like 10 to 30 ish.

Heather DeKeyser: Okay. That's still a pretty good range.

Lena McCain: It is a good range. Believe me, there are enough people to go around. Um, and I do individual therapy and group therapy. Individual is like, I think with any therapist, our bread and butter, we, I do a lot of identity and value work. I say I'm a value-based therapist, I'm not a skills- based therapist, I'm not a short-term therapist, I'm value-based. So what that means is that I'm gonna take your values, we're going to explore them, we're gonna discover them, we are going to put them in their rightful place and then we're gonna build out your belief system around those values. And we are going to apply that to your everyday life where you learn how to make decisions based on your personal values and your relationship values and knowing when to turn, toggle off your personal values to toggle on your relationship values. And when some of those have to be toggled off to put your personal values back. That's a lot of our individual work.

Heather DeKeyser: Okay.

Lena McCain: But I don't believe that we can do everything by ourselves. We have to have community, which is where groups come in. I'm a big believer that if you're in individual therapy, at some point you should join group therapy.

Heather DeKeyser: Mm-hmm.

Lena McCain: Because you and I can do all we want in our little room and you can be making leaps and bounds, but when you leave that room, you need a community to practice being brave, not safe group comes in that way.

Heather DeKeyser: Mm-hmm.

Lena McCain: I primarily run teen groups. I don't really run many adult groups. Um, though there is an ask as those teens are now turning into young adults. They're not.

Heather DeKeyser: I was gonna say like if you're a long-term therapist, you get to see them—

Lena McCain: I sure do!

Heather DeKeyser: — for several years of their development and growth.

Lena McCain: I sure do, I do, I do. Our average individual client stays with me for five years.

Heather DeKeyser: Okay.

Lena McCain: And our average group participant stays for three and a half years.

Heather DeKeyser: Wow.

Lena McCain: Um, and three and a half years is our current data. And so I've been in private practice for five years, started groups my second year, most of my groups my second year. So those teenagers who have been part of those groups are like, “okay, so I'm becoming an adult and I'm not ready to finish. Yeah. So will this just be in an adult group? What is this?”

Heather DeKeyser: Are you gonna start one? Um,

Lena McCain: Probably, I mean our current, we have a group right now of all seniors who will be young adults or they have gotten their GED already.

Heather DeKeyser: Okay. Um, so they're not going anywhere. They've already voted that they're not going anywhere. So that'll be the start of our adult groups. Um, and in those groups, I mean I have a specific EDS one for our teens, we let um, people up until 20 stay in that group.

Heather DeKeyser: Okay.

Lena McCain: If they've started when they're younger. Okay. Um, because there aren't groups like that. They meet every single week. It's the first time that they meet people with the same diagnoses as them as many diagnoses. So they come for EDS, all of them have POTS, all of them have like six to seven more of the same diagnoses, right?

Heather DeKeyser: Mm-hmm.

Lena McCain: So running groups in that way to really provide a space around that. And then I also take all of those things and I actually have a lot of digital products. We're about to come out with our disability meter.

Heather DeKeyser: So what's that?

Lena McCain: Yeah. So one of the things I hear time and time again because I work with so many disabled people is that pain scale and any scale that doctors and other healthcare professionals teachers give is useless. It does nothing because it doesn't actually talk about what is a disability and how am I measuring it. So this disability meter, I spend a lot of time working with them and it's more of like a weekly check-in and there are different sections for them to color code based on their anxiety, their grief, their use of medication, their hygiene, their sleep, their coping skills and their everyday like routines to measure has it been their baseline, has it been low, has it been severe? And then there's like kind of fill in your own blanks so that they can actually have a weekly summary of what they're going through so that they have something to describe to hand to a professional, their teacher, their doctor, their therapist, to say, “this is what a glimpse of my life looks like. Here's the rollercoaster. So don't ask me if I'm on a one to 10 pain scale, look at this and see how words don't even exist to share what I've been through.”

Heather DeKeyser: That's gonna help so much with integrative care.

Lena McCain: I hope so.

Heather DeKeyser: People with more than one provider or therapist and doctors.

Lena McCain: Mm-hmm.

Heather DeKeyser: And that is —

Lena McCain: Mmhmm. That is the hope.

Heather DeKeyser: Gonna be huge. Hope they can take it with them.

Lena McCain: Yeah.

Heather DeKeyser: Yeah.

Lena McCain: Exactly. I'll even have an online version for them to use. Nice. It'll be out within the next few weeks, so —

Heather DeKeyser: Very cool.

Lena McCain: Yeah. Yeah. So that's all our offerings. I mean I also do speaking and all that, but I would say a lot of my community work is in the individual in the group and helping people just learn how to, not just incorporate their identities but befriend their identities and let the values come through based on their identities so that we can have a whole person experience to healing.

Heather DeKeyser: I have learned so freaking much today. I really appreciate all of this information. It's a lot to take in.

Lena McCain: Mm-hmm.

Heather DeKeyser: I’m gonna probably re-listen to my own podcast several times.

Lena McCain: [laughter]

Heather DeKeyser: — just, and now I'm gonna be asking my clients about this. Yeah. I, I know someone recently who was diagnosed with POTS and just did not, do not know a ton about it. And so this has helped.

Lena McCain: Yeah.

Heather DeKeyser: And it gives me some more questions that I can go back and ask that I probably wouldn't have before.

Lena McCain: Sure.

Heather DeKeyser: Just, you know, being a little bit more educated. Is there anything else that you feel like would be really helpful in wrapping up for people or just listeners to, to know to consider to take with them from today?

Lena McCain: Yeah, as soon as you said that, the thing that came to mind is whoever is listening, whether you're a professional or you're a caregiver or you're the person with the lived experience, the advocacy that you can bring is so much more important than any of the academic knowledge of any people you will have to advocate to. So don't stop advocating. You will be the one that helps get the diagnosis, you will be the person that helps get closer to solutions and befriending and incorporate, incorporating and integrating. So keep advocating ‘cause you know more than the person with the degree always.

Heather DeKeyser: That's huge.

Lena McCain: Mm-hmm.

Heather DeKeyser: And with that we will wrap. Thank you so much Lena for coming on Sexcess Story and sharing everything about your journey and things that you have been through. I think it's gonna resonate with a lot of people and I'm excited for the feedback that's about to come.

Lena McCain: I hope so. Thanks for having me.

Heather DeKeyser: I’m gonna go ahead and put Lena's contact information again and her bio in the notes section of the podcast when I post it later so that people have a way to get ahold of you if they need to.

Heather DeKeyser: Okay, thanks for listening guys. Talk to you next time. Thank you so much for listening to this episode of Sexcess Story. We all know someone, or are that someone who has been affected sexually because of illness and treatment. In the coming episodes, you will learn that there are ways to overcome and deal with these effects and still experience a life full of sexiness. Stay tuned for our next episode and until then, keep creating your own sexcess story.

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I hope you all enjoyed listening to this podcast interview as much as I did recording it.

Until next time.

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About Our Author | Lena McCain MA, LPC. 0017723

Lena McCain is our Founder here at Interfaith Bridge Counseling, where she continues her support as our Clinical Director. She also holds a Master of Arts degree in Clinical Mental Health: Mindfulness-Based Transpersonal Counseling Psychology from Naropa University.

Lena’s drive and passions lie in the realm of community building and youth collaboration, which she has spent the last 12 years studying with an emphasis on one’s exploration of personal growth, community healing, and multicultural values. Lena’s expertise in these areas and the therapeutic field acts as a reminder to our community, teens, and young adults that they are not alone in their experience of life.