 Good day, my lovely listeners. You are listening to the Forty Auty podcast. Tune in every week to explore inspiring stories and insightful information that dive headfirst into the world of autism and mental health. With all those tantalising tongue twisters out of the way, let's get into the show. Everybody and welcome back to the Forty Auty podcast. Thank you for tuning in for another episode. I think we're at episode 10 now, so we're in double digits, and I am so happy to have you back here listening to me and my wonderful guests, which I'm not being mistaken. We do have two guests on today, a very, you know, a very new thing on the podcast. I am joined by the chronic couple, Matt and Brandy. Hey, Thomas. Hi. How are you doing? Doing good. Yeah, we're doing pretty great today. Yeah, excited to do this podcast with you. Yeah. Have you been looking forward to this? Because I know that we're going to be talking about something that I don't have a lot of knowledge on, so it's going to be interesting for me as well to listen to what you guys have to say. What is the topic of today? What are you coming here to say? I think that the message that we both really want to spread is that there, the connection between autism and Ehlers-Danlos syndrome, it's a connection that isn't spoken about a lot. Ehlers-Danlos syndrome is something that is extremely painful. It's a lot of widespread symptoms, and it's really hard for people to get diagnosed with this. A lot of people end up getting diagnosed way later in life. And so we've gone through this whole process of finding out what's going on with us. Why do we feel this way? And then over time, realizing that we both had the same thing, which is it's an extremely rare connective tissue disorder, and then going more into it, finding out through being more open about being autistic that a lot of autistic people have a lot of the same symptoms and have contacted us and said, you know, wait a minute, but that sounds like me. So we just want to get that out there because medical professionals don't tell you about it. It's severely under-researched. Yeah, it's not, there's not enough research out there, and a lot of the information out there is for kids and things like that, so we're wanting to really just help bring more education to things and bring more light to, it's more than, you know, you're more than just one thing, you know, you're more than just having autism or whatever, there's more to life, you know, there's more going on with people. Yeah, and I think one of the things that is difficult about autism is that it tends to come with, I mean, the medical term for it is a lot of co-morbidity, which sounds like, it sounds like a very strange word, but it basically just means that, you know, like something is linked to it, so like mental health and one thing that I, you know, that you're coming to talk about today, which is EDS, and I didn't really know much about it until I sort of read over your profile, but anyway, do you want to give everybody a little bit of an introduction into who you are and what you do outside of your work and your podcast and stuff? Yeah, you want to go first? Yeah, sure. Well, for me, I was actually more of the supportive role in all of this. Brandy did a lot of the research into the chronic illnesses and we'll go into more of that later. For me, I've been working a standard nine to five job and working from home and supporting my wife and during that process just learned so much about ourselves and the chronic illness stuff is what we both have been focused on for years, but what I do for work is more just I work at home just doing IT work and it's all just, I mean, it's all emails and phone calls and computer stuff, so yeah. Very cool. What about you, Brandy? So I am a professional singer. I was a background studio vocalist for a while and that was a lot of fun. It was in studio, so I didn't have to deal with crowds, but it's something that I've always loved music and had sort of a feeling that it was something that I needed to be doing. So I had a lot of opportunities that started to kind of come and arise and a lot of my career started sort of picking up momentum and the schedule of that. I was in two different bands. I was working for a label back in Atlanta doing background vocals on other people's albums and so we were doing like the bar scene and it just really started taking a toll on me physically to the point where I had to just stop, my body just shut down and I was bedridden for a while and I just was like, wait a minute, I've always kind of had these health problems and had a lot of problems when I was a kid, but I've been able to manage and push through and so my career really sort of aggravated that and made it worse because I suffer a lot with anxiety, so being a singer was really tough because I loved being on stage, but I didn't like what came with it, so yeah, that was tough and having my body just sort of break down forced us to beat at this point where I was just kind of like what's happening, what is going on with me and nobody knew what was going on, no doctor knew, no one and it was just such a lonely, scared place to be and so yeah, it's something that made me sort of want to get this message out more, you know, this is something that is considered rare, like a rare disease, but in actuality, there's a lot of debates whether or not it's not that rare, it's just completely under diagnosed because the symptoms are so vast that people just can't pinpoint that's what it is and it's actually sometimes hard to even pinpoint it until later in life and I got to correct myself, I am autistic, I don't have autism is so, like syntax is so bad, but yeah, we're, we actually you don't have to worry about what it's yeah but the thing is, it's kind of funny with our autism because her strengths are my weaknesses and my strengths are her weaknesses, so there's so much where it's like linguistically that I'm not saying that right, she's able to just help refine what I'm trying to say, like so often, like he's like, oh, I'm just an IT engineer, he's playing it, or I'm just into IT, he's playing it down. He's like one of the top IT engineers and he's like an international IT engine. I mean, it's just like, oh, I do IT work from home. Yeah, because like, it's just hard to explain, I just, I go into the detail. I want to be like, well, I connect all these TV companies and I connect to their servers. Oh, he's in charge of entire countries, but okay. Yeah, you know, it's just he just does a little IT work. Yeah. I mean, it's not like I'm resetting. Can he can he get me in contact with some of the some of the TV companies? Liberty Global, I think you might know that one. Yeah, but that whole speaking of that whole, like, identifying thing, that was something we had to kind of learn, like before we had always been like, when we found out we were both autistic, it was like, oh, you know, I have autism or all of that. And then to to go through social media and see these other autistic individuals saying, you know, that you you want to do identity first language and say, I am autistic and I have autism. That was something that, you know, like we're still kind of working on. We kind of slip up a little bit. Me more than her. I think in terms of like social media, there is a large emphasis on those kind of things. And I do understand it. And I think personally, I do say I'm autistic because, you know, it's it's me. It's a part of me. It's not like I have a disease and I'm, you know, like bedridden from it and stuff. It's it is me. But at the same time, like I'm I'm one of those people. I'm not really too fussed, like either way, if that makes sense. I know with social media, people tend to be quite oh, yes. reactive opinion about that kind of thing. Yes. Yeah. Which. Yeah, because I mean, we're kind of like you, like, I mean, whatever you want to, however you choose to identify, that is completely up to you. And it's cool with me. Yeah, it's cool, man. Your choice. I mean, but just to add to that point, I remember the first one of the first posts I ever did about autism and the connection between EDS. It was very, very new. And so I wasn't using the proper, you know, language and and and somebody just came for me. It's like, oh, they wanted to do it. She got a little stalked there for me. I ended up deleting it. I was like, oh, wait a minute, I need to like research things a little more before I start posting things. I don't want to offend anyone. Yeah, she she spends days sometimes working on a post to get it just right. Just so that you don't trigger anybody. Not only that, but also like she'll she'll give me a post and I'll be like, it means this. And she's like, no, I don't even know how you came up with that. What does this mean to you? You understand what I'm trying to say here. It's like 90 percent of the time. Nope, I don't get it. And then she has to. Yeah, it's it's a whole process, but it's great. Like, I feel like we have some perspective with the chronic illness stuff, but also being an autistic couple. You don't see a lot of autistic couples either. No, it's it you are the first first autistic couple that I've come across on Instagram. Like I haven't it's it's nice to to have have something different and I feel I feel like a lot of the the autistic influences and I know we've talked about this word influencer before, but it is nice. It is nice to have, you know, a couple and how can I ask them how long have you guys been together? Like seven years, seven years in a while. That's so crazy. How's that going? She hasn't kicked me out yet. Yeah, we were we dated for a year. And yeah, we actually met each other through match.com. It's like, yeah, like a dating site. And yeah, I remember at the time it was still sort of getting to be a little it was still not a hundred percent mainstream. I mean, I remember getting a little bit of flack for it. Like, oh, you're just going to meet weirdos on there. You need to get out and meet people in real life. And now it's just commonplace. It's like the opposite. Like, oh, you met someone in real life because everyone meets on these apps. And so we were kind of ahead of the curve there. But it was it was perfect because I, you know, just wanted to meet someone similar to me. And I wasn't about the bar scene and going out. And that's fine if you are, but it just didn't work for me. And so it was cool. Yeah, we like to have an idea of like who who the person is before. Right. Exactly. Yeah. Engaging with them. Exactly. Yeah. And it was kind of insane because we had both been on some horrific dates when we met each other. It was just almost like, oh, my gosh, you know, you're just like me. And we both had no idea we were autistic. But we both knew that we had these chronic illness conditions that the other one understood. And and that was really cool because some people will use that against you because they can't handle it. So we just clicked immediately and we kind of start just started hanging out like right away every day. It's interesting, though, when we first met, I don't think it was the first date, but it was pretty early on. We we have these like party tricks that you can do with. Oh, right, the double joint. And yeah, yeah, we can both like put our feet like completely backwards almost stuff and pop things out of my I mean, I thought it was it was great for me when I was like, you know, younger because I love to dance and, you know, things like that and you're leading and all of that. And so it was fantastic. But it, you know, as your older, it's not so great. Yeah, she was always able to do like ballerina and cheerleading stuff and no problem. And then I always wondered why the teachers would always be like, you know, you're so talented or something. And it'd be like, well, I'm really not. I'm just doing the same thing everyone else is doing. But I was doing it like, you know, a little bit more flexible with a little bit more flexibility. And so, yeah, it makes so much sense now looking back. I'm like, OK, yeah, that makes a lot of sense. You know, because, yeah, I was able to just do a lot of things easily without having to, you know, go through like a stretch regimen to get yourself flexible. She just woke up that way. Yeah, and so it's the thing that popped into my mind because recently I've just been. Have you watched Black Mirror? No, no, we've heard about it. Well, there's there's an episode on there called Hang the DJ and you're you're like story of going through like bad dates and then meeting each other and it's been like, oh, my God, like it reminded me of that episode. So you've got to watch it. Yes, just to know what I mean. OK, it was. We were just like, oh, my gosh, it was almost like someone as weird as I am. Yeah, I mean, I was really weird on the first day. I really thought I was scaring her off at one point, but it didn't. But this is a funny thing on what our third date. Yeah, he was so nervous. And had gotten in his mind. She asked me out and I just I know on the third day I did it. He had mentioned he had asked me out, but obviously like I had mentioned he had mentioned a movie he wanted to see like Avengers or something. Yeah. And so I'm like, you know what, I'm going to send this due to text. And I'm going to like ask him to go see the movie. And, you know, because screw the patriarchy, like the guy has to do it first, whatever. And so he he just got super nervous. And even though it was obvious that I'm the one that initiated the date, he said something at the beginning where he he felt like I didn't understand. And then he started looping that I didn't actually like him. And he sort of flipped out and like, like not in front of me, but he just like ghosted me for like the whole weekend. Yeah, no, at the end of the day, I'm like, well, it's pumpkin time. And it was like 10 o'clock. Yeah, it's pumpkin time. I have to go to sleep. I'm like Cinderella. I was I was so embarrassed. He was so awkward. Yeah. But the thing is, with him, with me, I found the awkwardness adorable. I liked it. And so when these guys, I would go out with them and they were all like Rico Suave sort of like, you know, these you know, we're so baby. Yes, exactly. These types. I mean, it just made me want to barf. And it's just like give me somebody who is into like, you know, comics and like fun, obscure topics and sci fi. And so his awkwardness, I felt, was was just something that made him even more attractive. But luckily, by that Monday, he came to his senses and just took me. What did you say you did like the whole weekend? He just like looped over and looped and played video games. And just I honestly thought I kept on thinking, OK, today I'll message you or text or a caller and I just I would start to text something. And it would just be like, I know, but no, no, I can't. And I just I kept fizzling myself out. So funny how he did in our heads. Yeah, I mean, it really almost cost us our relationship. If I didn't call you back. Yeah, I had gone to the point where I was like, OK, I like that he's weird. But if he doesn't call me by Monday, he's going to be a little too like too timid, timid, yeah, and shy for me. And that's not going to work. And so, yeah, because I'm a I'm a lot. I'm like, I'm a lot of personality. So but it ended up and actually when he called me that Monday, it was like we talked for like four hours on the phone. Oh, both our phones died. We put them on chargers and the whole thing was great. Yeah. And so it ended up working out. But to go into another really kind of crazy story that a lot of people don't realize it's like the the view that that people have sometimes of autistic people. I mean, I've been told, oh, you're a singer, you can speak like you're not autistic or you're, you know, a little autistic or something. And it's like, no, that's not the case. We, you know, it's just a neurotype. It's the way that our brains are made. And we can do anything that you can do if we want to do it bad enough for the most part. I mean, we something that happened with our our wedding is we had kind of a crazy, a crazy thing. We I've always loved this show here called Say Yes to the Dress. And it's it's on TLC. I've seen that. Yeah. And they kind of show you, you know, picking out your dress and everything. And and some people, they get their weddings filmed. And and so on a whim, I just decided to send in an email because you get 20 percent off your dress, you know. And so we ended up getting chosen. So our our wedding was on was on TLC. And well, and that was kind of cool. It was insane. And then we ended up getting a phone call from CNN. Yeah, CNN, the Morning Show. The Morning Show. Because of our our wedding date is 11, 12, 13. Numbers guy. Yeah. Like two seconds after proposing, I'm like, so I was thinking about the wedding date. And it's like, it's not going to come around for another century. So let's let's do that. And yeah, she was cool with it. It was on a Tuesday of all things. So it really made it weird for a wedding. But we had to do the numbers. But yeah, so we got an interview. We got interviewed on CNN about why we chose that date and being on stage to the dress and all of that. So that was kind of interesting. It's like, yeah, you know, people, autistic people, we can be in the public eye and, you know, be on TV and do anything, you know. Yeah, definitely. We just might need a day later to recover from it afterwards. The overload and everything. But I will say that was a lot, a lot. But it's something that was an interesting experience. Oh, my gosh. Yeah, it was it was a lot of fun. So what sort of drove you to start your your podcast and your Instagram stuff? Did you have any, like, motive in mind or some some goal that you want to achieve with it? For me, I'm the one that initially started. We both had our personal accounts and, you know, excuse me. OK, so I'm trying to, like, hold that back. I was the one who initially started a chronic illness Instagram account, and that was based on. Solely, the fact that I couldn't find enough information of actual people with some of the symptoms that I had was like I was googling and there was just all these like medical journal information this medical journal information and then like, you know, vague kind of things. And so I realized that if I search certain hashtags of my symptoms, I was able to connect with people going through the same thing. And that, more than anything, pieced together like every step. And and so I thought, you know, I think I probably need to to make my own account so that I can also help people and give them the information that has taken me almost 40 years to learn. And and so then it sort of felt in the market. Yeah, it's just it was kind of crazy because then about what, three, four months ago, I started talking about autism and opening up about that. And then at that point, that's when it just sort of, you know, exploded a little bit because so many autistic people deal with chronic illness. I think I'm sorry. I'm going to go on that. Oh, yeah. No, I was just going to say, like that her her build up of the chronic illness and the just the chronic illness, Instagram, and then when it's when it flipped. And I realized I had autism as well. And I have I'm autistic now. Oh, my gosh, I say that again. You don't have to worry about it. It's fine. So bad. So bad, though. If someone jumps down your throat for this, I will personally hunt them down. I appreciate it because I keep on saying it wrong. No, I mean, you know, I guess there is no right or wrong. No, you want to say it. Yeah, I mean, anyways, my being autistic and realizing it with her and all the activism she had just with the chronic illness when the autistic autistic community really opened up to us. It was like, whoa, someone that actually gets my jokes or like people that actually like similar things. I think one of the weirdest ones for me throughout my whole life was I have this really weird cotton issue, specifically cotton balls when they're pulled apart. It it it will lose his mind. Yeah, I'm just even mentioning it to you in my mouth is dry. I'm wanting to jump out of this chair. It's a whole thing. And I I really just thought that was just the weirdest thing that I had my whole life. Everyone in my family thought it was just fun to terrorize me with it. And I just didn't put it together until it's a it's a legit thing. And now I'm like, oh, OK, now I know why it's a textural issue. Yeah, it's a big one. I have the same thing with Pascin. I can't stand that. You know, like slightly ripe, like too overly ripe Pascin. Yeah, literally, like sends shock waves from my body. Terrorists. Yes. It probably bothers you just even saying it, I'm sure. Yeah, but I'm I'm a bit stubborn with anything. So I anything that I feel like I can't do, I try to overcome. So I used to just eat pears, just dying inside. Just trying to try to teach myself not to it's not to help that reaction. Oh, I so relate to that. Yeah, like I can tell you with my singing, I love to sing, but I have anxiety disorder. So I I will force myself to do it. And so what ends up happening is I barf before every show. Everybody knows band mates, everything have a trash can backstage. Brandy's going to barf and then she'll be fine. And then I walk out on stage and I'm fine. But it's like I'm not going to let that anxiety take over and run my life. I'm going to try my best to overcome it. That's brilliant. And I think because my my so my past was that I used to be an athlete. I used to compete in Taekwondo. Cool, cool, cool. And I used to go competing like around the world and stuff. And I went to some quite major competitions competing for Great Britain. And I always without fail had a panic attack before every single fight. So I understand that struggle, like it's horrible. It is. And then sometimes I remember once having one on stage and then having to barp on stage. And so she did it in a cup, the water cup. And I turned around and barfed and then came back and finished the song. Was like, you know, I'm not going to let it stop me. But it just definitely adds a layer of like just like a pain in the butt. You know, to to what you're trying to accomplish. That's really cool, though. Yes, I'm not the only one that does that. It is like it's it's very cathartic, isn't it? And you've got to kind of face that stuff. And I think I think that there is a heavy influence from like anxiety and stuff like that. And my I have a very close equitation mark some relationship with anxiety and depression like it plagues me. It's plagued me since I was about 14 years old and it's still continuing to affect me. And I think that there is that there is quite a high rate of mental health comorbidity as well with autism. And yeah, and I'm still trying to figure out to what extent that is biological and what extent that is social, because I did my degree in biomedical sciences and I decided to look into that quite a lot. And it does seem that there are genetic factors for that kind of thing. But then there is also but how do you measure the social influence? How do you measure the impact of bullying and being isolated and alienated and all that? Exactly, right. So it's it's it's difficult in that sense. It's that it's that expression. I've heard something about genetics, load the gun environment pulls the trigger. Yeah, definitely. I relate to that. Yeah, absolutely. Because yeah, the environment being autistic and chronically ill and not knowing that for your entire life is rough. Yeah, it's rough. Like we've both been like, you know, bullied and misunderstood. And yeah, and exactly. It's the same depression, anxiety, the whole thing. Well, and the thing is, too, you can be you can be depressed or anxious about something that happened years ago. And yeah, we'll plague your mind for the days and you just can't break from it. But I do think something that's helped both of us is meditation a little bit. But I mean, that's only going to help so far. I mean, I think there's meditation and medication. Yeah, meditation and medication. Yeah, that's literally just thinking of that. You've read my mind's meditation and medication. Yeah, that's the combo that works. But I might put that in my the title for this podcast episode. Yeah, that works. Feel free. That's kind of on brand for us. It's funny, though, that you, yeah, this is a good point that you bring up, you know, the mental health aspect because so many women are under diagnosed with autism because they are diagnosed with mental health issues instead. And that's something that I dealt with. I was diagnosed with everything from bipolar borderline personality syndrome or borderline personality disorder. It was an anxiety progression. I mean, yeah, just it went on and on and on. And and it wasn't until my therapist mentioned something about compare she compared me to a client of hers that was autistic and and it put this little like bug in my, you know, like ear. Like, could that be? Yeah, you're just thinking about it, looking up and. Yeah. And then it kind of snowballed from there. But I had been in the mental health system for a long time. And no one even mentioned autism. And the second that I was diagnosed like my therapist was like, how did I miss it? How did I miss that? I've not seen that, you know, because so many women are are under diagnosed. I mean, that that the numbers, you know, I think it's like four males to one female or something. I'm not sure if that's correct. But those numbers are probably so wrong. Yeah, those numbers could, you know, be be incorrect there because we also as females on the spectrum are able to mask even if we're the same cognitive level as a male. We can ask very, very well. Yeah. And so and then our special interests seem to be more socially acceptable as women. It's not like trains and, you know, something that, you know, is very obviously, you know, oh, you're autistic. That's a typical interest of a person that's autistic. No, but it my my special interests were makeup, hair, clothing, shoes, things that it's like, oh, you're just girly. But no, I wasn't just girly. I was obsessed, you know, but that's more socially acceptable. So it wasn't any sort of red flag. Were you the like sort of Hermione Granger type girl when you were younger then? Yeah, yeah, I was. I was I was definitely like I was I was spinning out facts a lot and kind of I'm sure I was called to know it all. She would brag to me about like how she would study for something like the night before and ace the the test the next day because she just like had that memory and skill with attention. Yeah. Yeah. This is something, though, that that I just found out through my valuation. I have something called dyscalculia. Oh, yeah, yeah. Yeah, I was homeschooled so from all the way until my senior year. And yeah, I just it's it's funny because for me, I liked computers. I liked math and that was what I was good at. And no one really gave it a second thought or or look about my behaviors. But looking back on it now, it's like it wasn't normal to spend whole weekends or months at home in front of the computer. Constantly, I mean, that probably was not a good, healthy read. Like the DOS. Oh, yeah. Cover to cover. My very first computer manual I read was 1500 pages at the age of 12. And yeah, read the whole thing cover to cover about. Nice. DOS that that that was my that was my game was computer. So I used to be I used to be a very big, you know, I liked gaming. But I think at that age, it was more of like an escapism thing like gaming and stuff. It was very heavily like something that I just wanted to zone out with, right? It was I used to be in front of the computer a lot, like because I didn't want to interact with people because people were horrible in my eyes at that age. And yeah, I'm guilty of that, too, with the gaming as well. Actually, in my 20s and 30s, I mean, did you ever hear of World of Warcraft? Yeah, I know, World of Warcraft. I was a redescape person, though. Oh, yeah. But I mean, you understand, like you would you would play like 40 hours a week in addition to whatever else you were doing in life. And it was it was just not healthy. I mean, there was so many years of my life I've wasted. And then he got like he converted the the like video game addiction. He sort of like made that, you know, a little less. But then he started playing games on his phone more. So it was just phone gaming, like everything was like it actually reached a point where we had to have a discussion about it. So you're, you know, always in your phone, like he's like running into people. Yeah, that's when you know you have a problem. But it really helped understand myself a lot more after you were stimming. Yeah, I was constantly stimming with video games. I think that's just like you were saying, you know, it's like you get sucked into it, it's an escape and things like that. But when it comes to stimming, I'm very different than her. I don't have any like fidgets or like I have to move something all the time. But give me a video game. I'll play that until I I've forgotten to eat and everything else. It's bad for days, go for days, drinking Pepsi, not realizing that it's got caffeine and not wanting to go to the toilet because you've got to level up. Oh, yeah. Oh, yeah, yeah, that is totally him. Like I would leave for band practice, which would be like four hours. And I would come back and like he hadn't moved. Like hasn't yeah, like has the dog been out? Like that would be an issue. So so you've you've talked a little bit about your experience with with autism, just like, you know, going through like what life was like and stuff, is there anything else that happened when you when you realized you were autistic? Like what what happened to your life? Where did it take you? For me, it it took me into really reflecting back on the rest of my life. I mean, 38 years of my life, feeling alone and not understood and just a lot of negative self deprecating thoughts. And after understanding I was autistic and then also the co-morbidity of having other Stamos and pots for me, that a lot of events in my life where something didn't go like I wasn't able to like physically do something or like I couldn't properly communicate with you in a certain way. Yeah, it just it really has given me a lot of permission to like just forgive myself for messing up. And I think that really helped to just have less internal strife and dialogue because I mean, I could loop on something I messed up on years ago and it ruined my whole day if I let it. But having that that knowledge of your of yourself and listening to other people's experiences helps with being easier on yourself because it's not just the problem isn't you. The problem is everybody else and how they work and how different you were at the time. I feel like that's how I felt when when I was reflecting on things. Yeah, totally agree. Yeah, it really is. Eyeopening just looking back looking for all the symptoms and looking through listening to people and backtracking to different parts of your life and just going, hey, you know what, like we had a bit of an misunderstanding here and, you know, I was different and they're different and you can go out separate ways and feel all right about it now. Yeah, I think there's a lot of that with getting a diagnosis because I feel like most people when they say when you introduce or tell someone that they have some autistic traits, they take it as, well, why do I have to do that? It's like it can be the people who have the most like jadedness and hatred towards people just because of their past and they could see no reason for it just adding on to the problems that they have in their eyes. But it's not about that. It's just understanding your life from a new angle that's true. I completely agree with that because coming from a person who basic like myself who basically just believe they were crazy. I mean, it's just like I had all these other labels placed on me that were incorrect. And so for me, the the label of autistic made me feel better. It was like, oh my gosh, like this explains so much. This explains like as a kid, I would have these meltdowns. I mean, just my mom said, you know, I would like hit my head against the wall and it would just be like all of these things where it would just be like, yeah, I guess I am crazy because only a crazy person would do that. I mean, and so when I was able to sort of put this label that I felt like fit on me, it made me feel so much better. It made me sort of feel like I found my people now because there are other people out there just like me, other women out there that have gone through the same things. I mean, and we talked about this on our first episode. But when I was a teenager, I had I had a meltdown that, you know, I ended up like freaking out and trying to hurt myself. And I ended up in a mental health facility for teens. And, you know, if everyone had known I was autistic, they would have recognized that as a meltdown and been able to to probably, you know, deal with that a little bit better. And I just I just kept thinking, I can't why can't I control my emotions? Why can't I control my thoughts? I'm just weak, you know, I'm just not as good as everyone else. And then you have society telling you that at the same time. And um, so close for me when the people around me. Oh, yes. And instantly comparing yourself with everyone else and why can't I do what they can do? And yeah, but it was like my my chronic illness diagnosis is explained a lot of different things. But it didn't explain everything. And it was like, my mind was then hyper focusing on those things that it did not explain. And then when I got my official diagnosis of autism, I it was like, yep, that explains everything that's left. And I could let this weight go of just like, that's why I did that because I don't like to have a lot of friends. And I've gotten a lot of flack for that. And I just thought, you know, I guess I just didn't like having friends because there's something wrong with me. And then to see all these other people that are just like me. It's just was like this welcome to the team. The aliens among the human race. Exactly. It's like, I felt like I belonged for the first time in my entire life. And really same. Same. I mean, I think the autistic community really is awesome. Because they actually understand our humor, our life stories. I mean, I'm sure what we're mentioning here on this podcast, there's other people that will be able to relate. I do. And it was fun. Yeah, definitely. Awesome. It's awesome. It was funny too, because my diagnosis came first. And then as soon as they started, you know, talking to me about it, I was like, wait a minute, my husband does the same thing. He was like, Matt, you need to you need to ask your therapist about this. And yeah, yeah, when I asked him, he was like, well, you handle things so well. And you I mean, I've never seen any kind of behavior from you that would would hint towards that. And I'm like, going into like past childhood things. And I think the one that finally got him was when I was telling him I was getting chased by my younger siblings with a cotton ball and screaming in fear. And he's like, yep, that's a little spectromy. Okay, dude, like that's where his Instagram name is from. It really is. Cool. So do you want to give us give us a little introduction into what EDS is? And, you know, what are the main sort of symptoms? And how did it how does that link into autism? Yes. Okay. So excuse me. So EDS is a connective tissue disorder. And there are 13 subtypes of EDS. One of the more common ones is hypermobile. And that's the one that Matt and I both have. The way that you would find out if you have EDS or not is to make an appointment with a geneticist, which a lot of times that's really hard to get a referral to because doctors wanted to dismiss your symptoms as something else or all in your head. And they don't want to give you that that referral, which was really, really tough to get. I think it took us almost a year. And she had to get it from an allergy specialist. And then it was after he had tried for six months of failed treatments with horrible side effects. And I just basically like was like, send me to a geneticist. So because I know this is what's wrong with me. And even though I had people telling me, Nope, you don't have a connective tissue disorder. But I did. And some are a little bit more aggressive as far as symptoms. Vascular EDS can actually shorten your life. Yeah, yeah. And so the geneticist we ask him, we're like the type that we have, are we gonna have a shorter lifespan? And he basically said, no, you'll live as long as everyone else, but it's just gonna be a lot more painful for you. And it's just like, Okay, well, I guess that's good. But, you know, it's a connected tissue disorder. And basically, our, our body produces faulty collagen. And since collagen is the main protein, that, you know, builds the structure to your body. And it's everywhere. It's in your joints, your skin, in your cells, your ligaments. Yeah, cardiovascular, everything. Because our collagen is faulty, all of our systems are pretty much affected. And then it causes weak unstable joints, reprinted dislocations, partial dislocations. Because it causes heart and digestive issues. A lot of people with EDS also have something called POTS. And that's that stands for postural orthostatic tachycardia. And, and Matt has that. And another co morbid condition of EDS is mass cell activation syndrome. And I have that. So you must have a lot of allergies, then. Yes. Just going back to my lectures at uni. Because it's like some of the things that you're saying, it's like, I know that word. What is that word? She she has a lot of allergy stuff. Yeah, those bloody mass, mass cells. They're so, they're, they're really, I can curse here. It involves lots of cursing. Some people, unfortunately, in the EDS community have what's called the trifecta. And that's EDS POTS and mass cell. And so we're lucky that, you know, we just got one of each, I guess. Yeah, from that. But, but yeah, if you if you want to visit the Ellers-Danlos Society website, that gives a lot of information, a lot of symptoms. And basically, you know, you can, you can kind of get more information about it. POTS and mass cell are, are two things that, that really, really suck. Yeah, they add a lot of pain to your life in addition to Ellers-Danlos. It's just so unrecognized by the medical community that it took me until I think 38 to get diagnosed with Ellers-Danlos. And, and that was even with at 15 going to some of the best specialists for my allergies. But they just, you know, I had hives, chronic hives, a lot of anxiety. They even described it correctly at the time. They were like, your body's allergic to itself. Is, is the simplistic way of they put it? Basically, it's like they describe what mass cell activation syndrome is, but they didn't have a name for it. Then it was basically, I think maybe four or five years ago that they, they put a name for it. And, and it causes like really strange reactions to food, mold, heat, chemicals, basically chronic inflammatory systems, like you're allergic to everything. But yeah, and then, and then pots, like Yeah, and then the pots portion, really, it's a lot to do with blood pressure. And so if I stand up too quickly, I can faint. And that's a long fall for me because I'm six foot four. I get that. My vision goes a bit blurry and I feel a bit dizzy. I think that's just postural hypertension as well, because I'm quite tall as well. Compression socks help with that a little bit. And then also, if you're not wearing compression socks, tensing up your, your calves to force the blood to normalize really helps. But the biggest thing is just when you're doing any of those kind of movements from like bending down or any kind of times where your head is below your chest, and then you stand up too quickly, you just got to be careful or like put your feet on the wall straight up. And that helps. Um, he Matt was actually started this whole journey, like I mean, with the chronic illness thing, because I knew I had issues with allergies. I knew I was allergic to a lot of different foods and all of this. But you know, that's just basically what I was told I was, you know, I managed it was fine. But then one day we were at a concert and yeah, yeah, and I ate too much food. And I told Brandy that I did not feel good. I needed to find a restroom really quickly. And she was dragging me along through a crowd and trying to help me and my hand slipped. And when she turned around, she saw me falling headfirst into concrete. And that was woke up spitting out pieces of my teeth. Oh, no. Yeah, it was intense. Crazy. I thought he was not a lot of help because he basically was just like a tree that fell straight face first arms to his side. And I just started screaming. And then everyone else this little girl beside me then she started screaming. And then paramedics came luckily because we were at a at a concert. So they were right there. But um, that started this whole, you know, like, research into like, wait a minute, what do you have? And then once he got diagnosed with POTS, I got diagnosed with mast cell a few years later when I got to the point where I couldn't go outside without having these like physical reactions where I was allergic to basically like the air. I mean, it was just like chemicals in clothing, chemicals in target, I went to target once and I couldn't breathe. I mean, it was like so many chemicals because I was my mast cell wasn't being treated. It had gotten to that point where I needed medication and that I didn't have because I wasn't diagnosed. And so then we both got this diagnosis. And through Instagram, through chronic illness, I started realizing this pattern that people with these conditions also had this thing called Ehlers-Danlos syndrome. And then of course, we Googled that and it was like, that's us 100%. And then the job started of convincing a doctor. It's so annoying that you have to do the work, isn't it? It's like, oh yeah, it's, it's painful. It's painfully annoying. Because it's like, you have to do the work for it, but you also have to convince the doctor that they're not seeing something that they're supposed to be seeing. And that annoys them. And then you just get in some annoying little sort of situation where you keep going to like, tell them and they're like, no, you go back and you're like, no, and then they give up and then they do it. And they're like, yeah, you know what, you were right. Yes, I got down right, like, right. Right. They keep on going like, well, you know, it could have been this too. And, you know, they try to make themselves feel better or whatever. So many doctors, I want to just take my diagnosis and shove it in their face. You're like, Oh, really? Told you so. You know, it's like, yeah, and that was a long road getting a little geneticist can take years to get into. Luckily, we got it in six months, which was a little less. But um, yeah. And then and then once we started talking about autism, I started finding these other accounts of like way too many because, you know, we noticed patterns. I started pattern noticing all of these autistic accounts with other downloads. And then I, you know, went down that like rabbit hole of research. And it was like a very under researched subject that is a comorbid condition for a lot of people who who are autistic. And it's like, man, why don't people why did no one ever was no one tell me this stuff? Yeah. And I wasn't just going to like, you know, this like, you know, random doctor, I was like the best specialists. And no one mentioned it. Yeah, it's like, it's crazy. And then you hear the best of the best. And they're like, Oh, it's going to be thousands up front. And it's a multi year waiting list or things like that. And it's like, I mean, it's just insane. Even now, like the view of autism is so misconstrued. Like I have a specialist that I go to for my mast cell syndrome. And when I'm he's like, Oh, anything new going on. And I'm like, Yeah, I'm actually diagnosed with autism. And so I, you know, found that out. And he was just like, he kind of sort of looked at me like, perplexed. And was, yeah, he was like, But you're really high functioning. And it's like really? I mean, I guess I appear that way on the outside, but you have no idea what I've been through. I mean, you know, you have no idea the meltdowns that, you know, things that have happened to me, like, I may appear high functioning, and I may be a lot more functioning than a lot of other people. But, you know, just to be dismissed like that, like he almost didn't even believe me. Like, oh, you're just a little autism. Yeah, it's like, it's like people assume that everybody puts in the same amount of work as well, like to try and get over things, because you can have it's like, you can you can be really, really, really bad at socializing. And then you have to put in a lot of work to get to like a normal sort of level, just does like a little fall experiment. But then like, if you could put in like a massive amount of effort and get really good at socializing, but you could initially be really bad at it. And people only see the the peak of that, don't they? Absolutely. Yeah, they don't understand all the the behind the scenes thing. It's like they, they feel like they can tell you that, right? Like, yep. Even though you they're not exactly and you know, it's so funny the way that that my doctor speaks and talks, I was looking right at him and I'm like, I wanted to be like, and I think you're on the spectrum too. Because I could see it, I could just see it the way he spoke to a little of a double click double clean. Like he didn't make contact with me anything. I wanted to be like, you might want to check yourself out there. But yeah, I didn't say that though. Yeah, no, no. We all want to people that usually don't respond well to that. And I don't know why. Well, I mean, I do know why but they shouldn't. But it's like, it's almost like from this side of the fence, it's like, it's like, I don't know why I mean, it's not, you know, it's like, it's been such a come join me. Yes. It's like, you have no idea what internal struggle you're having, because you're not willing to explore this part of yourself, you know, it's it's huge. Yeah. So what are the most common difficulties? Like do you find that are associated with EDS, the like things that you try to avoid or like problems that that cause a lot of difficulties in your life, like even, even like now. I can tell you, chronic pain is the biggest one. Absolutely. I read an article where a doctor actually this sounds extreme, but a doctor actually compared the pain that a lot of people with EDS have to the same pain as cancer patients. Because for certain times, when you have a flare, it's like, for instance, I've been in a flare for what he said, two weeks, almost a month or three. But for the past two weeks, it's really, it's really been bad where I can't really walk. And so I have a wheelchair that I use for those instances. And I use I have like two canes that that I can use. And because your joints are so loose. And it's almost like the way someone explained it, it's like you're walking. But for you, walking five feet is going to be like running five miles for the average person, because your muscles are working so hard to hold your body together because your your connective tissue isn't doing it for you, that you get tired very easily. I've had constant like dislocations, I can pop my shoulders in and out. And like, I've constantly had sprained issues, like as far as like sprained ankles. I've lost count. And for women especially, men can be affected, you know, just as much as women. But for some reason, women tend to be affected a little bit more because of our hormone imbalances as far as like what we go through every month. And so because we're already a little bit more flexible because we have kids. So when we have these hormone surges, it makes us extra flexible. And so then you walk and you feel like your knees are going to buckle underneath you or something. And this is something I was able to kind of push through for most of my life. But now that I'm 39, and I'm going to be 40 in August, and it's like, I notice a lot of people with EDS around my age, it's like, it's almost like when your body starts kind of falling apart a little bit. And it does make sense that women would be more sort of more regularly affected by it. Because I know that just testosterone, which is obviously hiring guys has a tendency to thicken like connective tissue and has a tendency to cause like hypertrophy, that's like increasing muscle size and strength and stuff. So that I can imagine that that would affect your joints as well. So like, imagine in a good way, right? Exactly. Well, yeah, that's that's what's funny about is, like, we know when it's a bad pain day for her, because I'll also be in pain. When the weather changes, like when it's about to rain, or if the temperature like sharply drops down really cold, I'll wake up and be like, okay, my for me, it's mostly my just major joints like knees and elbows and ankles. And for her, I'm like, what hurts? She's like everything. They, the geneticist, I got diagnosed first. And then, you know, he of course, sent me to all these specialists and physical therapy, orthotics and all the stuff. And then when he got diagnosed, he was like, Do I need to go to any of those places? And he was like, No, just watch yourself, don't get injured. You know, like, yeah. So yeah, he said the same thing. You just said that the testosterone makes his connective tissue more dense. And yeah, so it holds him in a little bit better. And then I'm over here just all over the place. But it's kind of a Do you know what I was thinking about? Do you know those like, those sort of like wooden string structures that you can get where it's on a platform. And then you can like, you can like push push a button and like, the string laxes and the structure just falls down. Yeah, you can press it again and then it like, that's it. Yeah, that is totally it. Yes, she just falls apart a little bit more than that. It was really scary because I had to stop singing for a while. And for a few years, just to kind of get this all straightened out and have a YouTube channel. And so someone found a local band here, we live in Asheville, North Carolina. They saw me singing and they asked me if I wanted to join. And I cried at first because I was like, I would love to join this band because I would be one of three singers. So in the past, you know, I was the only singer. So it was like four hour sets, you know, just a lot of pain. And so I cried because I just really wanted to do it. And then I thought to myself, you know, I'm on the right meds, I've I have braces that I can use. I have back braces and, you know, braces for every joint. And like, maybe they'll be okay with that. And so I asked them about it, and it was just very upfront about like, listen, I may have to be in a wheelchair sometimes, or have a cane on stage. Is that okay? And they were cool with it. And so that's not only that, but she found out a bandmate, his husband, his wife, yeah, his wife has a connective tissue disorder. Yeah, I think there's different ones. There's like hypermobile syndrome, I think is one or hypermobile joint syndrome is one of them. And then, and then EDS and then the different subtypes. But but yeah, so he completely understood. And I was just so scared because sometimes in the workplace, you know, like in the past, I've been fired from jobs because I called in sick too much or I wasn't able to do this or that. And so I wasn't sure if they'd be like, no, you know, that's not going to be okay on stage. But it was it was really cool because yeah, they were okay with it. And I think that more disabled performers need to be seen because, you know, we're out there too. This doesn't affect my voice, you know, so I can still sing. So so that was cool. But yeah, it's been kind of scary, because as I'm older, it's sort of affecting me more like for instance, last week, I had to cancel band rehearsal, because I was in so much pain. It snowed here. And so that caused like this pain flare to go nuts. And so it's just really tough. Like with EDS, the biggest thing I guess I could say is like waking up every morning, and you just don't know if you're going to be able to walk or you don't know if you're gonna be able to eat. I mean, it's just like, you kind of crack your eye open, like, what's it gonna be today? Lucky bag. Yeah. Every so often you get a day where you're like, it's a low pain day, you feel good. And then on that day, you just want to do everything. It's like, you know, let's go everywhere. And then you ultimately end up overdoing it and paying for it. But well, that's the thing I think she's had to figure out the most is when she's in those bad pain days, learning to not really be as active and bed rest actually helps her a lot to recover. And it's kind of good that we're both not on the same level because of like pain, daily pain, because we would be in trouble if we were both like, you know, like having issues with walking. I mean, but it would be it could be done and it may happen one day. Who knows? But at this, at this point in time, I'm really glad that he sort of he really does take care of me a lot. As far as the muscle, I lift stuff. That's it. He lifts me sometimes. Mr. Death Osteran. Yes, exactly. So yeah, it's like, but it's it's so crazy to like all of a sudden, having this, this, this issue where you have to use mobility aids and seeing the reactions from society, when you have a cane or a wheelchair, that's that's been eyeopening for sure. Like a negative. Yes. Oh, yeah. Negative reactions. Oh, yeah. People are like, you can you're in a wheelchair, but you can walk. And it's like, yes, it's called screw them. It's like people understand, okay, your spinal's broke with your spine's broke, you're in a wheelchair. Anything other than that, people don't understand. Seriously, I'm cured. Yeah. I can stand. Oh my god, you're, you know, your question. How's about we get a hammer and we take a hammer to each of your joints and see how you can walk. Exactly. Exactly. And then just, you know, with canes and things like, you know, what happened? What's going on? Or kids saying things. But at the same time, for the most part, people just ignore it. Like they'll just look at the cane and just like look away. And and then other times it's it's unique to see people just sort of like, you know, make a way for you, like get out of the way, get out of the way, you know, like, kind of giving you like extra special treatment. So it's kind of, yeah, like a weird. Yeah, it is. But we have run into other people that are using canes and wheelchairs and it's been a very interesting, pleasant exchange. Yeah, when that's happened. It's like we see each other. Yeah. You know, so it's yeah, it's kind of this unspoken like look, you know, it's like, I see you girl. But or guy. Yeah, you got to be gender biased on this podcast. I'm covering all the all the genders here. So what measures do you put in place? Because you've talked about, you know, wheelchairs and canes and bed rest and stuff. But are there any like, different sort of therapies or medications that really help with, you know, the chronic pain and the difficulties of EDS? Uh, the one word weed. Weed helps a lot. Cannabis is also known. And we have been both actually Brandy introduced me to cannabis and it's been a huge part of our regiment to manage our pain. And it's also a mast cell stabilizer, which I had no idea. So as soon as I found that out, I'm like, that's why I was flamater, isn't it? Yeah. Like that's why I've been a pothead because I feel better. It made sense. And it's funny, we've gone through all the different forms that you can have it. And we've really found for ourselves, we've made edible versions. And that's really helped us to be able to just take it as medicine when we need it and tea and yeah, it's good to go better for your lungs and things like that. But yeah, we're we're about to see you guys based then because I'm guessing that you must be in one of the legal states then. No, actually, we're not. No, you know, we're we're we should be though. We should be. But the place that we live is known as like this like city of like Bohemian, like, you know, it's like hipster. Yeah, hip central is like just. Yeah, everyone here is just like, I don't know how to explain it. But basically, you walk in and the whole place smells like weed. Yeah, we're not we're we're in good company. Yeah. And so there's all of these like CBD dispensaries basically just waiting for the for the for the go to turn into actual dispensaries. So yeah, but it's it's been kind of rough because when we first moved here, we didn't have a connection to find any because it's you know, it's and we had to just take what we got, which is super dangerous. It needs to be something that is regulated. So you know exactly what strain you're getting. And sometimes that's really hard. Luckily, we found someone here and you know, he's super cool. And yeah. And but that took a while. So but then on top of on top of that, you know, the right medications for me so far, I take something called hydroxazine. And that helps neuro inflammation. It helps a lot of racing racing thoughts helps a lot with anxiety. And it's also an antihistamine. And I read a study about how a lot of autistic people actually benefit when taking hydroxazine because it helps to calm the neuro inflammation and it helps with anxiety. And in fact, some children who took it after they started taking it, I think transdermal patches, some of them that were non verbal became verbal. And so this is something that my mass cell specialist put me on for for MCAS, that's, you know, basically the abbreviation. And when I researched it, it just so happened to be something that that helped some of the the traits and comorbid things with autism also. So and he had no idea, even though I know, I know the antihistamines can they are also a sedative unless you get it in a different form. And I have had antihistamines before and they do sort of cheer me out quite a lot because I'm I'm on I'm on multiple sedative medications, not not because of this sedative, but I'm on an antidepressant called metazepine, which is quite heavy sedative. And I'm also I also know that SSRIs are as well. So I'm on I've recently gone through a big medication change, which is being absolute hell. Oh, those are the worst. Oh, she's trial and error. Let's just throw this and see if it works. It's nice. Nice. I knew in my my head that it was short term because the worst thing is is when you know that you feel like there's no it's just never ending. Yeah. But my mom has been put on teleprome as well. She's she's on it and it helps her a lot. And it it has very limited side effects with me now. And I've been on it for about three weeks now. And it's it's been quite good. It's just about managing the anxiety now. That's huge. That is so huge. I mean, yeah, like hydroxyzine, it's I'm on like a high dose and and it knocks some people out. But for me, yeah, it's like after about I got used to I got used to that. And then it also promotes deeper sleep, which I have an issue with. And so when I do fall asleep, it helps me to stay asleep longer. But um, but yeah, I finally like evened out on the on the reactions on that. And and then I also take something called chromol and sodium, which is a very um, it's actually a drug that's a mass cell stabilizer. It's in liquid form. And not a lot of people know about it. I actually found out about that through Instagram and then had to convince my doctor to put me on it. And after everything else he had tried had failed. And um, and so then yeah, that was a big one as far as my my symptoms there. But the blood with their allergies about mass cell, though, is that you have such a reaction to additives in medication that and vitamins and things like that. So in the past, when I've tried antidepressants, I end up being allergic to them. So that really sucks. Yeah, I can imagine. Yeah. And I've tried a lot of them and they yeah. So it's just yeah, it's really tough to find a good medication for me. Matt has tried several of the meds for for pots. And he ended up not really well, the biggest thing for pots is increasing your salt intake, because the biggest problem with pots is having a low low blood pressure. And I've always had like, they're like, oh, your blood pressure is great. You're right at the, you know, edge of perfect or whatever. And it's like, no, actually, that's not good. Because I mean, sometimes it's like way low. Oh yeah, it's it's the whatever that second number is, it just gets way too low. But yeah, because you have the white the white collar syndrome thingy way where you see doctors, your blood pressure increases and all that. Yeah, yeah, yeah, social interaction. I'm out inside. Oh, no. Oh, side note, because I have such severe reactions to chemicals, because doctors' offices are so heavily clean, I end up having to wear a face mask when I go to the ER or all doctors' offices because it I react to all the chemicals in there. Yeah. And it's so insane because even though I don't have her physical reactions of like turning red or not being able to breathe. Because we've been together for so long and going through all this, I will pick up a smell sometimes when like before she's even in said room or whatever. Preemptively. Yeah, preemptively. I'm like, okay, watch out over here. There's a smell like this. You want to go, you know, it's just like this whole directional thing based on smells, which is really cool. Like, yeah, I think you're the sniffer dog. Yes, he's like a blood hound over here. But yeah, and he has sort of like same issue, cologne and perfume. Oh, that sends me like over the edge. And and that's really tough. But but yeah, yeah, it's just for you, but just braces, braces and salt. Yeah, it was just salt and like, I mean, I take some good like vitamin supplements that are supposed to help with pots and things like that. able to tolerate vitamins. I'm not. And so that something about the additives, I don't know. But as far as this being like something that's linked to autism, it's crazy because they really just don't know why that there's not really a reason. There's a lot of speculation. Some sometimes with with genes, they have there's this thing called the hitchhiking effect, which is when when certain genes get passed on because for some for some reason, they get they get passed on. During during, you know, when when those genes sort of risen, rose up, you know, ages ago, a while ago, sound very scientific right now. Yes. And those when those genes are passed on, they can carry other genes that aren't particularly good for you or advantageous in any way. And then they can pass it on. And that can be very highly comorbid with something else so that that could be a reason because I know that in our society today, autism is considered to be by medical professionals considered to be a disability, but there is always a reason for why it's around. There's a reason for why ADHD is around. And that's because if you if you need someone to look after you during the night, you want someone to be able to jump up and have loads of energy, just completely awake at the drop of the hat. People with ADHD are great. And if you need someone to sort of sit on their own and come up with new ideas and sort of invent things and stuff, then autistic minds, you know, and then you can get that hitchhiking. And it, you know, that could be a reason. Right. Yeah. The general consensus I've read is just that because autistic people, we have such hyper aware brains immune system, central nervous system that it just makes everything a little bit more. Yeah, just kind of express itself a little bit more. And that can mean negative things too. So, yeah, because I know sometimes if I am in a situation where even where there isn't a smell or a scent or a trigger, but I just get stressed out or sensory overload or a meltdown, then I will then have severe like EDS flair. I mean, hives, mass cell flair triggered by stress. So my triggered by myself. So about the like, how does marijuana help with your condition? Like, are there any sort of like noticeable things that you can you can tell that it helps with some quite interest? I've done a lot of research into it because I find the topic of like how drugs affects, you know, the brain and the body and stuff and I know about the whole like THC and CBD and terpenes and all that stuff because it interests me. So how does it help? For me, it helps because this is the crazy little conundrum here. A lot of people with EDS, we have to have pain management. And so, you know, opioids seem to help but because I have mass cell you don't want to touch those things. I can't touch them because I will break out on hives or I mean, and if I do take pain medications, I mean, I have to be like on death's door. I mean, because I know that I'm gonna have a reaction because of it. So for me, marijuana was something that I didn't have a reaction to for the most part. On occasion, you do though, if you get something from someone because it's not regulated and here and they may have used some sort of chemical or something on it and then I would have a reaction. But for the most part, that's something that I was able to take for pain without a lot of side effects. But I will tell you. Oh, sorry, go ahead. Is it is it more of sort what what sort of side of of the marijuana helps? Like is it the THC or the CBD or the combination of both? Because what happens for me is if I do just THC, I get super paranoid. So the anxiety sort of gets worse. So for me, mixing the CBD with it helps kind of even it out so that I don't like get in this like freak out loop. So and I think the interesting thing about the combination is it really is about the strand and how much you take. And it's all very personal to you. I don't think anyone should really think, oh, yeah, same person takes this as another they're going to have the exact same reaction. Everyone is so different. Oh, yeah, I know people who they just, you know, one puff like and they're going to be freaking out. I mean, it's just it's obviously not made for everyone. And I, you know, have that fine line that I tell a lot where, you know, I try not to get too high because I will I'll get paranoid. But Matt, on the other hand, he has no too high. No, I don't know. He just becomes, yeah, like like, himself. Yeah, it's weird. I mean, I think the worst side effect I'll have is, you know, hungry and little little forgetful. But other than that, I mean, I'm good to go. But I think the biggest thing is that regulation part is, you know, until it's regulated until you are able to go somewhere and get exactly the right version with all the right combinations of terpenes and CBD and all that, it's just always going to be a hit or miss for us, unfortunately. Yeah, I did read somewhere though. I have I have done a lot of like, you know, research into the into the benefits of of it. And there are so many, so many things that it could treat that would that change people's lives if they could get it regulated, if you could get it, you know, refined and proper and right, dose and all of that. And it's it's just mind boggling for me to hear about like all the opioid addiction and all the problems with those medications being so rampant when you've got this other thing that's, you know, the one of the only worst things that you can really get from it in the long term would be that sometimes it can aggravate tendencies towards schizophrenia, but even then it doesn't cause it, it just makes it happen quicker. Right. It's it's mad for me, like, yeah, people just have this stigma around it. But we do have CBD, like CBD is legal in the UK now. And I I have, you know, like CBD tea and and all of that. And that really helps with my anxiety, like nothing helps. There's like, you know, sure, sure, maybe I could like drink, but that's horrible. Like, it's really damaging for you. Oh, I can't drink. Definitely not a good idea. Turn bright red. But then CBD just helps. Like it really does. It just quietens down my mind and my anxiety and it helps me sleep and it's it is massive for me, CBD. And it's it would just be nicer if it was a bit more mainstream. And I know that there is like a heavy interaction between THC and CBD. So we have to have less than one percent in anything. So if it was like two or three percent, like it would have more of an effect, like a more of a calming effects, but more of an anti-inflammatory effect. But we just have the regulations at this moment in time. And I think that's why it's important for all of us to like change the stigma of what that is. I mean, it's like I smoke weed every day and, you know, it's just the the stuff I'll get from it sometimes like negative comments and things. Yeah, you just you get compared to it. You get compared to being like a drug addict. Yes, just like a drug addict. Even if even if it is just CBD, like people are still right. And then I read this whole article by Dr. Afrin, and he's one of the top mass cell specialists in New York and has written several books. I think it's the Neverbette Gets Awkum, I think is one of his most famous books. And he talks about how the mass cells have these like a cannabinoid receptors. And when you smoke marijuana, they will attach and calm down the mass cells. So it does. It kind of helps that tremendously really. Yeah, I can imagine. Just it's maddening. Yes, that it's like, you know, a doctor will be like here, you can have this, you know, a drug is highly addictive and dangerous and don't take too much you'll OD, but this thing over here that's natural that you cannot OD on. It's like, you know, you could just go for the legal high of alcohol and damage your white matter and your brain and your liver and your organs and interact with your medication. Exactly. Oh, that was another thing when we first found out that we were both on the spectrum. We're like, that's why we can't drink because so many I mean, some people, you know, on the spectrum can drink just fine, but like a lot of people can't. And both of us would have such like crazy reactions. We would be out with friends, you know, our family members and and, you know, try to have a drink because we would feel pressured or something. And and then both of us end up, you know, barfing, feeling like death for three days. Yeah, it's like the hangovers, like quadrupled or something. It's it's definitely like I'm definitely like a heavy weight in that category. No, no, like it takes takes a lot. Yeah. Yeah. But then one, the the backlash afterwards is just maybe maybe you're a little younger than us. So you haven't experienced it yet, but it's like yeah, because I can drink a little bit more like in high school and college and like, yeah, I could drink. You know, I felt almost like pressured to drink, but I would never understand why, like, I couldn't just like bounce back the next day, like everyone else. You know, so. But during the drinking. Yeah, during the drinking hours. Superman, you know, you get to go. But as I've gotten older, yeah, I can't I can't do it anymore. Like one sip and we were out somewhere. And I think, yeah, I was like, just give me a little maybe I'm just going to try it, you know, it's like a margarita or something. And I looked like a lobster. Remember that one set when I was so red that I was embarrassed to be in public. Yeah, but the thing is like learning about this kind of stuff and sharing this info, someone hearing or reading something on Instagram could help open up doors and give them ideas of, oh, I need to go to this doctor. Oh, I can't even tell you how many people. A lot of the difficulties with any sort of things to do with doctors is that you sort of you come into it a bit immature to just what medical stuff is like. You feel like that you're just going to go when they're going to give you a list of possibilities and then try out each possibility. But it's more of you've got to collect evidence together and then try and push it on them constantly to try and get them to respond to you. Yes, that's the main the main thing that you've got to do. If you want to help yourself, it's a lot of effort when you're a part. If you've got like mental health and stuff, it can be so difficult. Like, oh, oh, yeah, the combo is a lot. If you mentioned that you have, yeah, anxiety or something like that. And their first go to is that you are a contract or you're just, you know, it's all in your head or it's trying to get pain pills or that's the biggest pain like a pain flare that you have to go to the ER and then they just send you home because they think you're a drug seeker. And so it's not even worth it anymore. I'd rather just, you know, not go. She's had nights where it was the level of pain where we should have gone to the ER and just we both knew it would just be sitting and waiting and nothing really coming from it. So and it's scary because you don't know experiences like yeah, with with having like panic attacks and stuff. Right. You think you're dying and then it's like with a white room. Yeah, it's like in a white room, just with a bright light in your face on your own, just like twitching for hours, hours, not sleeping. Yeah, exactly. It's like, oh, my God, it makes you worse. And then like and then with chronic pain, you just don't know whether it's just your normal chronic pain or if it's an actual injury. And then do I have like a appendicitis or like am I am I dying? Like, I mean, and then these thoughts kind of loop of like, you know, maybe I should get it checked out. And then ultimately it's like, nope, it's just your good old EDS pain. And it's kind of learning after a while to recognize the difference, which is really hard. Yeah. OK. So I feel I feel like we've we've got through a lot of that. And we've talked about a lot of things. Would you like to give me a couple, a couple or triple of points from the podcast that you want people to to go away with? Like you want people to remember and take on board from what we've talked about? It's always a hard one. So don't don't worry if you take it that time. I mean, it is a hard one. I think one of them is, you know, there's a great lot online community out there for chronic illness and actual autistic adults out there where you can really get really the best information, I think, out there because, you know, if you've got all these research papers, all this medical jargon, and it just doesn't even sound real, let alone helpful. I feel like the communities out there online and talking to actual people that have lived and gone through these things. You're just able to get more out of it than your typical Google search or whatever. The chronic illness communities as well. It's like these people are a lot of them are bedridden. And, you know, this is one of their only outlets for communication or seeing another person that's also bedridden and talking and talking about your struggles and that sometimes, you know, there's a stigma attached to to social media. But in certain situations, it can be the reason someone has to get up in the morning, you know, because you have all of these online friends with with people that have the same condition as you have that haven't been able to walk for three or four days and you feel like you're losing your mind and you can talk about it. And so, yeah, changing that stigma and realizing that you can use social media for good to connect with people and to advocate for for a cause or also just to get information about something that you're you're really scared about and you just feel alone and don't know where to turn. Yeah. And I think the second point would be very similar to the first point is just question things more for yourself. Don't just take what you see online and at face value or what your doctor's told. Oh, yeah, like, you know, when there's something wrong with you and if everyone is telling you that there's not advocate for yourself, exactly, you know, if you know something is legitimately not right or you want more insight on something, become your own advocate and realize that you're going to get a lot of nose and you just have to keep going. Yeah. Yeah, especially and unfortunately, especially for women. It seems to be like, I don't know. I maybe it's just because I've seen Brandy go through so much of this. But I feel like there were so many times where she got questioned where I was like, do I need to go in there and beat up your doctor? So it's definitely you got to stay strong with a lot of this. Yeah, it's it's tough. And I think, too, just making people more aware of the connection. Yes, that autistic people have with EDS as a comorbid condition, because, you know, for for people for autistics who are nonverbal, they may be in tremendous pain and have the physical symptoms of EDS. But nobody know that they may not be able to communicate that. And so when I started talking about this more, I got a message actually from a special education teacher and was like, I had no idea. A lot of my autistic students are extremely flexible and are, you know, in pain and nobody has really, you know, delved into that part or aspect as much as they should have. And she told me that, you know, she thanks me and said she's going to start telling all of her the parents of her students about this. And so just getting that message out there. I mean, yeah, that this is a comorbid condition that that affects a lot of autistic people. And it's in its rare and there's not a lot known about it. But it's something that that more people need to know about. Is there a last last little point that you want to bring up? Like changing the stigma, I know that's changing the stigma about what people think autistic people are like. Yeah, like just knowing that we're more than just people that are like whatever view you have or more than that. Yeah, yeah, because for me before I was autistic, I had this view of what autism was that was deeply incorrect. And it was kind of an ableist perspective, honestly. And so when autism was discussed with me, it was like, no, I'm not autistic. No, you know, like. But I kind of went back and forth with it in my mind, you know, it like planted the seed and but my initial response was like, you know, no, I can't be that because the people in my mind that first came to my mind were children I had met in school that were that were diagnosed autistic. But then they also had an intellectual disability. And so that's the difference. And I think a lot of people get those two confused that it's it's a neuro type and and yeah, it's it's not what you what you think it is. Yeah, a lot of bad assumptions. Yeah, there are a lot of bad assumptions and there is a lot of stigma. But I feel like it's not it's not intentional bad assumptions. I just think that people don't really know about it that much. And we are, I mean, to be honest, we are a very we are a minority, you know, like one or two percent. And you could you could argue that, you know, that's never stopped us before about trying to give a quality and stuff like that. And. But we are sort of just starting to join the the bandwagon of awareness and stuff. And hopefully it will take us to a place where it's more integrated and we will have to have, you know, so much mental health and horrible life experiences for autistic people. It's like it's it's decent to the to the point where it's if I was ever going to consider having like a child or something, I'd have to honestly weigh up whether I want to bring an autistic child into the world, not because they're autistic, but just because of what they'll be exposed to. Yeah, and it's it does play in my mind a lot. And it's it's like, well, what would I do? Yeah, it's it's difficult. Yeah. And that that leads us into the last question, which is what does autism mean to you? Matt, would you like to answer this? Yeah, it really means for me, understanding my behaviors in the past in better ways. I feel like I'm able to process my traumas and other struggles. Like, more I've learned about the more I've learned about autism and how to cope with things I struggle with, I feel like it it makes those past events. Not as harsh on myself. And I feel like, yeah, the more I've learned, the better I've been able to forgive myself for things that I misunderstood or awkward situations. Or I mean, sometimes I even make observations of stuff that I'm just repeating back what I see. But the way I see it and the way I say it, either someone's going to laugh and be rolling on the floor or think I'm very peculiar, odd and want to run as far away from me as possible. It's it's one of the two. So it's unintentionally hilarious. Yes, along the best way to. Yeah, it's fun. But it's it's also it's a little difficult. But I really feel like learning about autism has helped so much in growing as a person. And it's just been great. I mean, I think not knowing for almost 40 years was harder than knowing. I can't imagine. Can't imagine. How about how about you, Brandy? For me, I think what autism means to me is just it's who I am. It's it's something that I no longer see as a disease or this horrible like tragedy to be autistic. It's something that I now see as just the way that that my brain is is connected. It's a neurotype and it's a group of people that I belong to that make me feel heard and seen. And it's something that made me feel so much better about being different. Because now I feel like being different is is better. Being different is more interesting. Being different isn't wrong. And I think that being autistic for me, yeah, it's just it's it's who I am now. And it's who I've always been. And I just didn't realize it. So, yeah, it's something that that's basically like set me free from this eternal loop of beating myself up that I'm just a horrible person. And so realizing that I'm not a horrible person. And that was a response from people around me who didn't understand me. And and now it's like autism has helped me find my tribe and people that they get me and like me just the way I am. So, yeah, in ways, it's made my life harder and I understand that. But in ways, it's made my life better. And I think that's something that we want to talk about. And the reason why we have our own podcast is just to to get that message out there, you know, change the stigma. Absolutely. Brilliant. Thank you. Thank you both for that. Hey, thank you. So would you like to give out some links? Because I know that you mentioned the podcast there. Yeah. So there are any links and sites or places that you want people to go to? So if you just search the chronic couple on YouTube or I think we've got like 11 different podcast platforms around, so just search the chronic couple and you'll find us and then on Instagram, Brandy's at the dot chronic dot couple. And I'm at Spectrum me underscore Matt on Instagram. And yeah, follow us on both of those platforms. And then for more information on EDS, there's the Ellers-Danlos Society. And then from there, you'll be connected to their social media platforms. And there's a lot of information there as well as like specialists in certain areas and and yeah, a lot of good stuff there. Yeah. And I think that's really the main links and things we want to. Yeah. Oh, and and I'm just trying to think there's also he set up this really cool thing on our on our Instagram link link tree. Link tree. Yeah. I've seen those a few times. Yeah, links to to some of my performance videos like my YouTube and for singing and my my different accounts, you know, for for my career as far as a vocalist. So but that's, you know, sort of hidden in there in the link tree in case anyone wanted to see that. Yeah. Good stuff there. Yeah. So. Cool. And if there's if there is anybody out there for anybody for anybody out there and listening to this podcast episode, you can always listen to it for free on Spotify, Apple Music and YouTube. And if you want to see some more videos related to autism and mental health, you can always check out my YouTube channel at Asperger's Grove and then obviously Instagram, Twitter, all of that stuff at Asperger's Grove. Guys, thank you so much for coming on to the podcast. It has been great to talk to you and it's been very insightful in something that I don't have a lot of knowledge on. And it's definitely been very interesting for me. Thanks. Have you enjoyed it? Thank you for having us. Yeah, it's been great. We really did. Yeah, thank you so much for reaching out to us. It was great. No worries. So, yeah, this is this has been the the 10th, the 10th 4080 podcast episode. We're definitely getting through them. And yeah, thank you so much for coming on and I hope to speak to you again at a later date, possibly on your podcast. Oh, yes, absolutely. Of course. It'll be great. Cool. Anyway, all said and done. Thank you everybody for listening to us monologue about autism and EDS. See you later, guys. Have a good day. This has been Thomas Henley from the Asperger's Grove channel and the 4080 podcast. See you later. You can say bye as well. Thanks. Bye. Thanks. Bye. Yeah. Get lost. Yeah, it's OK. Go do something. We have definitely, definitely various outros. Yeah, exactly. Yes. Stop the question. Get your executive functioning stuff done. Bye. Exactly. Yes. Don't forget to eat. Bye. No, I don't want to drink your water. Bye. That's a good one. Always need to drink water. Yes, that's a big one. That was so fun, though. Thank you so much for having us. Very good. No worries. Let me let me just stop the recording now.