Hello my feelers + healers! Today's conversation with Mattia takes us through their journey with chronic pain, feeling better, and the ways they navigate their inner mindbody conversation as someone with AuDHD + PDA. We touch upon themes of neurodivergence, gender transition, resourcing inner + external safety. We chat about using hypnotic techniques to decrease a sense of threat/unsafety that may accompany disorders like ehlers-danlos syndrome and POTS. Mattia Maurée is a composer, writer, and host of the AuDHD Flourishing podcast. They help other neurodivergent folks who want to build a sustainable life but struggle with the day-to-day. They have a true obsession with arctic puffins. Content note - there is brief mention (without details) of abuse, assault + suicidality. Please take good care of yourself listening to this episode and trust your pace. In the episode notes, I added recovery stories in the mind body medicine sphere that show people recovering from POTS, from mast cell activation, from the pain with Ehlers Danlos Syndrome (unclear if they identify as neurodivergent). There's so much that we don't know about the mind body connection. So what I would like to do, as I always do, is I never want to be a limiting factor in how well anybody can feel, and what their individual journey can look like. So, when I share these stories, I really want people to take what resonates for them, what works for them, and what helps make those neural connections between their experience and the interviewee's experience and help build a bridge for their own mind body experience and inner conversation.
Hello my feelers + healers!
Today's conversation with Mattia takes us through their journey with chronic pain, feeling better, and the ways they navigate their inner mindbody conversation as someone with AuDHD + PDA. We touch upon themes of neurodivergence, gender transition, resourcing inner + external safety. We chat about using hypnotic techniques to decrease a sense of threat/unsafety that may accompany disorders like ehlers-danlos syndrome and POTS.
Mattia Maurée is a composer, writer, and host of the AuDHD Flourishing podcast. They help other neurodivergent folks who want to build a sustainable life but struggle with the day-to-day. They have a true obsession with arctic puffins.
Links:
Main (starter podcast page): https://www.audhdflourishing.com/hello
Like Your Brain (peer support community): https://www.patreon.com/mattia - so good! I'm in here and love it.
Love Your Brain (course): https://www.audhdflourishing.com/challenge-page/joinlyb
Related recovery stories that might be of interest. Most are not my clients but they are working with the mindbody healing techniques, theories and resources that I speak about on this podcast:
S2E29 Petra's Pain Recovery Dream Life - she has EDS and recovered from chronic pain.
https://podcasts.apple.com/us/podcast/s2e29-petras-pain-recovery-dream-life/id1595415545?i=1000661834736
S3 Ep33: The Neuroscience of Chronic Pain: POTS, Interstitial Cystitis, Fibro, CFS and more with Gigi
https://www.yourbreakawake.com/podcasts/the-cure-for-chronic-pain-with-nicole-sachs-lcsw-2/episodes/2148744168
First person experience using these techniques to recover from POTS and Long Covid.
https://www.reddit.com/r/LongHaulersRecovery/comments/18c8e50/100_recovered_potshi/
Ep 41 Intuitive Healing From Chronic Fatigue, POTS, Lyme Disease, Long COVID and More with Rebecca Tolin
https://podcasts.apple.com/gb/podcast/ep-41-intuitive-healing-from-chronic-fatigue-pots-lyme/id1679033028?i=1000664796548
Morgan's TMS Success Story - Long COVID, POTS, Dizziness, Digestion, Nausea, and Food Sensitivities
https://youtu.be/IUavpJfgs50?si=Nzk26wt98r-4yTN6
S3 Ep82: Lifelong IBS, Depression, and Adult ADHD with Alice (at the end she speaks about how ADHD is connected with life long masking + stress)
https://www.yourbreakawake.com/podcasts/the-cure-for-chronic-pain-with-nicole-sachs-lcsw-2/episodes/2148744120
How I cured my Mast Cell Activation syndrome (MCAS) with Helmut
https://youtu.be/SrG6P5N439g?si=g4Iz8ELFaCTtMQcz
Vanessa shares her shocking recovery from Pots, meniere's disease, pppd, Gastroparesis, cfs, + with Helmut
https://youtu.be/vduQns3cR3k?si=ZXqq_jghIW9j7INX
And here's a scientific article that talks about the psychiatric + nervous system symtoms that are connected with EDS. In our conversation Mattia touches upon the interoception and felt sense of danger that is associate with EDS in our conversation.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/?
[00:00:00] Welcome to the curiosity cure podcast. I'm your host, Deb Malkin, master certified life coach, body worker, hypnotist trained in pain reprocessing by the pain psychology center, queer elder fat human on planet earth here to help you evoke the power of simple neuroplasticity techniques rooted in shame, free curiosity.
[00:00:29] So you can feel more better. More of the time in the body you have today and build the rich, full life that you want to live. A quick disclaimer. This podcast is not a replacement for medical care. I am here to provide insights and techniques that can compliment your healthcare journey, but always consult with your healthcare provider for personalized advice.
[00:00:54] Deb: Hello feelers and healers, it is Deb with the Curiosity Cure and I am very excited to bring to you this conversation today and I would like to give a gentle content warning, it's not really a warning, it's just a content awareness that there is some conversation about childhood abuse, assault, and suicidality.
[00:01:22] We don't go into any content, but those things are mentioned and I think that it is important to let you know ahead of time so that you can take the very best care of yourself that you can. So that might mean, one option is to read the transcript ahead of time and make sure that you're feeling comfortable when you're listening or making sure that you listen when you feel like you have the capacity to really hear and, or turning it on and off, listening, coming back to it, taking breaks, coming back to it.
[00:01:54] Right? You don't get any points, for powering through anything. And this is a great opportunity for you to, to even become a loving self witness for yourself. I might be calling this one, Neurodivergence and the Inner Conversation.
[00:02:11] I hope you enjoy. Thanks.
[00:02:12] So hello, Mattia. I am so happy to talk to you today. I almost cannot express how excited I was to get that like enthusiastic yes back from you. And I was like, Hey, I would really like to talk to you specifically about your pain recovery journey. That's the language that I use. You may use different language and so I'm really excited to like dive into this conversation. I know that so much of the work that you do, you have your own podcast, you do work to help enable other people's journeys. And so I think this conversation is going to be really powerful in that regard. And of course, also selfishly. I like you and I like talking to you. And so it was like a double win.
[00:03:03] Mattia: Yay. Yeah. We always have a good time.
[00:03:06] Deb: Yeah. So let's just jump in. Why don't you introduce yourself, tell people in my audience a little bit about who you are and what you do. And then maybe the first question to answer is like, tell me how, like your, like, even just when I say that word, what's your relationship to it?
[00:03:26] Mattia: So to introduce myself, I'm Mattia Maurée. My pronouns are they, them. I'm the host of the AuDHD Flourishing Podcast. And like a lot of autistic and ADHD people, I also have hypermobile Ehlers Danlos and POTS. And I did have a mast cell activation stuff can go along with that as well. I think I probably did actually have that some when I was younger, I had a period where I was allergic to a ton of things.
[00:03:53] And so I've had a very interesting health journey in general, but a core component of a lot of my experience was pain. And pain was what got me to address a lot of my psychological issues and trauma. I had a lot of trauma. It's so hard I feel like to describe how bad my childhood was without saying anything that would be like overtly horrifically triggering, um, the best kind of, uh, shorthand I have so far is me and my siblings have made multiple therapists cry when we describe our childhood. So it was bad. Um, and I didn't know that until I was about 20. So I was, I grew up very, very sheltered.
[00:04:43] I grew up quiver full, which is a very weird, specific little niche, evangelical thing. I'm the oldest of seven. But my mom had 16 pregnancies in my childhood and almost died multiple times from miscarriages would have died without, uh, Uh, the medical intervention that is only available because abortion is still legal.
[00:05:03] So that's something my mom has not understood kind of like putting those pieces together. My dad is very violent, and my mom is very emotionally abusive. And part of the reason that pain got me to address what was going on is that I internalized a lot of things like a lot of high masking or late discovered neurodivergent people do.
[00:05:26] So I was internalizing a lot, and then you add the Ehlers Danlos, which is a connective tissue disorder on top of that. And, as a specialist told me more recently, well, hypermobile joints just hurt sometimes. And there's not really anything we can do about that. Um, so I'm in my, I don't know, 10th or 15th round of PT right now, um, for just stuff going on.
[00:05:49] And the pain that I had was actually the worst between about ages like 16 and 25. So it was like by far the worst when I was younger. And so part of my journey that I feel like is a little bit unintuitive is that most people are like, oh, I'm getting older and things are starting to hurt more. I'm like, I was in debilitating, I passed out from pain on a regular basis in my teens, and it was just so unmanageable and it was so, uh, alienating. To feel like nobody believed me because when I would seek medical help, they would just be like, well, you're fine most of the time. Right. And, you know, a lot of just no help at all. Um, or giving me things to do that were actually bad for me, like stretching.
[00:06:33] So when I was 20, I dislocated a vertebrae in my spine doing a dance thing. And that was when a doctor said, Oh, it's because you are severely hyper mobile. And I was like, what? No one's ever said that to me, even though I've been getting injured and complaining about pain since I was like, 7 years old, nobody had ever bothered to like, see if there was anything behind that. So that's kind of when I started doing the, I guess, more like medical journey. I also grew up with, uh, medical neglect. So just like not getting medical care also didn't help. And at the same time, I don't know that they would have done anything from what I've heard from other people.
[00:07:12] Deb: Yeah, that might've meant surgeries, that might've meant other interventions that still would not lead to feeling better.
[00:07:19] Mattia: Yeah. Yeah. So I guess when I was like 16, I started my own sort of self journey of like reading books, um, trying things like art therapy, but on my own, I would basically like read a book and then self therapize.
[00:07:33] I didn't actually start therapy until I was 18, um, after an assault, actually. So that kind of, that was like an obvious beginning. I had big T trauma in my childhood. I just didn't really know that or like remember enough of it, basically. And then when I started actual therapy and started saying things, they were like, Oh, what now?
[00:07:51] Like, no, that is not a nice, cute story. That is a horrible, horrible thing. And that just kept happening over and over. I basically was seeking anything that would work and I tried all kinds of things in the sort of like woo category, um, including things that I, I believe don't do anything. And I think really are placebos, but placebo works really well for pain.
[00:08:12] And I was just like, anything, I will do anything. I was trying all kinds of things. If basically if somebody suggested something to me, I would try it, um, which I think is another common experience with pain. You have like this, this period of like, I'll do anything. I'll try anything. And then eventually you get to the point where you're like, stop.
[00:08:27] Yeah. Stop suggesting things to me. Like that is not helping. Um, many years later I learned, uh, that my body has a tendency towards some specific vitamin deficiencies. Like my body doesn't process B12 well, I think. Um, and that's one that a lot of neurodivergent people report having issues with, or that it makes a big difference when they supplement with it.
[00:08:50] So it's not so much that there was like one single thing that was like, oh, this fixed the pain. Looking back at it, I think if I'd known how hard that journey was going to be, I probably would have killed myself in my teen years. Like the decade from 16 to 26 was so hard. And, of course I obviously, you know, I'm a very staunch wait and it will be better later advocate now, but like.
[00:09:16] Pain is so, and especially that type of pain that people don't understand and don't believe. And that you're like, I'm trying everything and like, some things are helping somewhat. It was, you know, kind of up and down, but I think the combo of the psychological trauma, the masked neurodivergence, the actual medical conditions that were undiagnosed, and then, uh, A lot of tension from again, all those things, like all those things together, just like a huge amount of muscular tension, just made it so hard to even see a path to getting better.
[00:09:54] So I basically just doggedly stuck with it and tried a bunch of stuff and eventually it just got a little bit better. And then I did, I certainly talk about more like specific things where I feel like there were big leaps forward, but I feel like that initial almost 10 year period was just kind of trying everything it sucked.
[00:10:13] Deb: There's such a different experience when you're in it. And then when you're kind of past it and able to reflect, uh, cause 10 years is a long time. And it's a long time when you're young. You know, your brain is still developing and you don't have a sense of history, right? So when you're 16 and you look back 10 years, you're six, like a lot happens and changes in that time.
[00:10:37] I mean, I'm 54 now and I look back 10 years, I was 44, I was still an adult. There's a different quality in being able to understand time and even the things that are happening on the inside of you that are creating what we call pain or the experiences that that you're having in your body.
[00:10:59] So just listening to that. I just see the, like, the fortitude that you have. And, and also just like so much love for that you who suffered so much and thank you for, for naming all of that. And for feeling like safe or comfortable enough to share.
[00:11:22] In the mind body world people talk about, ACE scores, that's adverse childhood experiences and how that relates to chronic pain and people don't understand, because we've been taught a Cartesian model of the body that if you feel pain in the body, there's an injury to the body but we're a whole system.
[00:11:41] We have this mind body experience and pain is often a protector. All kinds of things that we're learning now about threat physiology and cell biology and I think neuro divergence and what we're learning mast cells and all these things, uh, we're kind of in this place of emergence. And one of the things that I see going on is both a lot of hopefulness and a lot of fear. And I think these stories can really help people bridge their own gap, you know, away from fear and into some sense of hope. And then of course, uh, a path forward or multiple paths forward, because I do feel like there's overarching themes in this work and then there's the, how it works with the individual.
[00:12:27] One of the things that stands out for me is that you started feeling better. You know, or you were feeling more better as you were getting older. Was that because you had more greater agency in your life? Like, were you out of your parents house? Were you feeling like you had more control? I'm curious about that.
[00:12:50] Mattia: I'm sure that was a factor. Um, I know another big factor is that when I started to transition and take testosterone, testosterone enormously helped both my pots and my EDS. Um, I was able to build muscle in a way I'd never been able to before. I was also malnourished as a kid. So I was like, Small and under muscled and then like low muscle tone is also common if you're autistic for like a lot of reasons.
[00:13:16] So I basically never built up enough muscle to actually support my joints. And then when I finally was able to put on both weight and keep on weight and muscle as a little bit later in adulthood, like that was one of the biggest overall switches because I had done PT and like worked out before and tried to build muscle.
[00:13:35] And it just felt like it was not happening and then eventually I was like, oh, this is what it takes. And also the testosterone really, really helps. So that was huge. I mean, certainly like I moved out when I was 15 and that started the process of being able to kind of look back and, and get some distance.
[00:13:56] So that definitely helped, but I think. The like feeling better as I'm getting older. A lot of it is just, I just keep getting more muscle and that's just so important for, I mean, Ehlers-Danlos in particular. Um, and then also when I came out, a lot of people told me I looked less tense when it came out as a gender queer and non binary.
[00:14:16] Um, so I think I've had these, like, I actually feel like I'm in one right now. I have had these big change moments where I become much less physically tense and I can feel things shifting around and like everything feels weird. It feels weird to walk, like everything. I'm all my movements feel different.
[00:14:34] And it's this like release of a kind of layer of tension. And it always feels really scary because when my joints don't feel supported, like the muscles, what's holding them together. So then I feel like I'm more injury prone. So it's this like weird, scary thing, but it's always a good thing because it has come along with these big, like, you know, coming out or like big personal changes or like feeling safe, it's always a good thing. And, and yeah, I can, I can feel that happening again now, which is interesting because I don't have a lot of pain now. But I can still feel, oh, I still have these like you know, guarding or tense tendencies or posture is just like learned because they're so ingrained in the body when you're unsafe for your entire childhood.
[00:15:20] Deb: Absolutely. The body is showing up, taking care of you, right? It is like on your side and it's so important, right? It's like the care giving that you didn't receive is now coming from your body, but in this form of, of armoring and restriction and pain and protection. Well, one of the things that you said was so interesting is when change is happening and it feels weird.
[00:15:49] Now it seems like you have enough trust that it's a good thing because I sometimes see people, they'll have doubt or flares, or like the fear of things changing and being weird, kind of makes people take a step back right when they're creating that safety for things to change. So I just appreciated you saying that and having that ability to self reflect and share that with people.
[00:16:20] Also parallel, like being, post menopause, I am also taking testosterone, but in a hormone replacement dose, cause I'm not at this time in my life. Like I'm identify as non binary, but I'm not interested in inviting in any gender change with my hormones, but. And it's so fascinating because there actually is no kind of hormone replacement therapy for menopause dose of testosterone. So it's very fascinating little universe of sexism, but it's so interesting to kind of try to map my own. My own journey with pain and as it's changing, and bringing in testosterone and estrogen into my world alongside these other mind body practices, because it's hard to know, right? There's no just one thing.
[00:17:14] I want to know a little bit more about the idea of safety as well as how that pairs with neurodivergence.
[00:17:23] Mattia: Oh, such a good, big question.
[00:17:26] Deb: Yeah, it's a big one.
[00:17:27] Mattia: Something I haven't brought in yet, but that feels really important is I really do identify with the term PDA, um, the official term that, For the most part, the community does not use is pathological demand avoidance.
[00:17:42] The community term is persistent drive for autonomy, but basically everybody has demand avoidance, which is where you just don't want to do things and you have a strong reaction. Like, no, I'm not going to do that. You know, if someone tells you to do something and then when it becomes more extreme, even if you tell yourself to do something, it feels like, okay, that thing has become impossible.
[00:18:03] Some of the examples of it are really absurd, like the amount of length I will go to to avoid doing something someone told me to do. And I'm literally doing more work. It's not regular demand avoidance is like, oh, it'll be too much effort or I don't want, you know, I want to save my energy for later. And when it gets to this extreme, it's like my nervous system is reacting, it's having a full on threat response, full on fight or flight to essentially a request. Because it's perceived as a demand. And it's like, I, I have to do that. It feels, it feels so awful. And I don't have that equally in every area of my life, because it's true that trauma healing has helped with some of those areas, but man, the, the ones that are there are just ridiculously strong still.
[00:18:44] And part of the reason I want to bring that up is because one feature of PDA is that people often just feel constantly unsafe. Literally never safe ever. Um, there's never a return point because that activation in the body, that cortisol response, et cetera, is happening constantly all day, every day, and never stops.
[00:19:03] So that was, yes, my childhood was bad, but I'm sure that adding this layer on top of it gave an extra. Like my physical symptoms have been worse than any of my siblings. So I'm guessing that that was directly related. And then also, you know, they had me and I didn't have anybody because I was the oldest.
[00:19:23] So that was another factor that, you know, anyway, but the PDA piece, like the neurodivergence, the safety. You can understand intellectually that I'm allowed to say no and your demand doesn't mean anything to me and I'm allowed to, you know, do whatever I want. But like, it's this weird process of gentle parenting and like low demand parenting this part of myself basically. I feel like I'm infantilizing myself that I have to do it. To get through the day, little example, I always forget when it's trash night. We're sitting on the couch last night. I turned to my partner and I'm like, I would like you to know that I have remembered all by myself that it's trash night.
[00:19:59] And I just like, I'm all happy. And my partner goes, let's turn this moment into action. Like, let's go put the garbage away. And I. Literally had to like, like grump and like grunt and make little noises. And I still did it, but I had to have this little like tantrum basically, because if I don't let that out of my body, I internalize it and it becomes tension, not even necessarily pain, but it's like, it's just adding to my body's stress load.
[00:20:25] And I have to do so much work to regulate myself around stupid little things like that. It's it's honestly, probably the most annoying thing I experienced. I would say it's the PDA stuff. It's just, it's so silly. I look at it and I'm like, really nervous system like this, this is what we're getting worked up about. Not real problems that we actually have or like big things in the world.
[00:20:51] It's like, the fact that my partner wants to immediately stand up and do this right now, which I would have done anyway. Like I, I, but I wouldn't have done it in that moment. Right? So it's just this very like weird layer of my body believing that this is not safe about just all these little things and it's so annoying.
[00:21:10] Deb: I 100 percent agree with you that is annoying. I have a. I have a similar thing, and sometimes I, I find a lot of relief in the label and like calling it PDA. Sometimes I just call it demand avoidance so that it feels a little bit soft. It feels a little bit less clinical. Sometimes I just have my hands on my hips and I got the, like, I just call it, like, you can't tell me what to do, itis, you know?
[00:21:34] And I find being playful with it really helps me because when I, when I actually call it stupid for me, it sends me into that shame spiral. And I just recorded a podcast about how I'm still trying to ride my bike. And you know, there's no reason I have to or whatever. It's a desire.
[00:21:57] And it's like, I'm caught in that spiral and loop and like demand avoidance from my own demands. And I find it so fascinating. Now to have a little bit of understanding about my neurodivergence and also how it relates to things in my childhood, right? Not having agency in some areas, um, and how difficult that was, like not being asked, you know, if I want to do activities or how I want to do them, right? Not being seen as an autonomous human being with my own likes, dislikes, preferences, and, and so on.
[00:22:40] Mattia: And that has such ripple effects for me in, in my experience with how my body feels, because like, for example, I still just growing up in a, in an anti medicine household, I still forget. That I can just like take ibuprofen or Tylenol, like it is okay to, or like the medications that have been prescribed to me, I am allowed to take those. And it's not that I think of it and go, Oh no, I don't deserve that. It's just this, like, I don't even think of it sometimes because that was just not for, you know, the first 15 years of my life.
[00:23:15] That was just not how you approached pain. You just dealt with it and like, didn't complain. And that was the only option. And that's obviously so toxic, but it really does like that, that lack of autonomy. Um, I think also trickles into like, my experience isn't valid or isn't important. Like it's not worth, you know, if I'm having discomfort, sensory discomfort in a space where no one else seems to be having a problem.
[00:23:44] If it's something I can handle myself, like put in earplugs, great. If it's something where I have to ask somebody else to like, change everything you turn the music down. Can you turn the lights down? Like that feels so much more consequential, even though they're really getting it. The same thing, which is like, I deserve to, you know, have my sensory needs met in a basic sense and to like, feel okay.
[00:24:10] And that feels like a big leap when you don't grow up with that. Not to mention still all the ableist stuff in society that just doesn't really acknowledge that
[00:24:20] Deb: all of this feels like one of those, like, I don't know if it's like a Japanese cake that has like a gazillion little tiny thin layers, but this whole thing feels like this very multi layered experience about, um, yes.
[00:24:35] Resourcing that internal safety, but also feeling confident in resourcing external safety. So that might mean learning how to ask for help or being able to articulate your access needs or like, and all, you know, and then structural things, like things that we actually do to our body that help us regulate and interact with the world and part of, you know,
[00:24:59] My universe of pain reprocessing, you know, we're always thinking about how do we sense into safety source safety, and not just the idea of safety, but the felt sense. Of safety, which is hard to do when you have kind of a, a chronically unsafe, like what you were saying, that kind of feeling of, of chronic stress and also learning how to decrease the threat response in our own mind, body experience. So maybe that will lead me to the next question, which is because I've heard you say, and maybe your podcast are in conversation that.
[00:25:38] Is it that you don't feel like you have chronic pain anymore or the, there are just areas in which you don't feel pain and you used to feel pain. So maybe some version of like what's changed for you and like maybe what the experience now is. Like, what's different now that you've experienced change?
[00:25:59] Mattia: The biggest change I think is that I used to feel like chronic pain for me was constant for a really long time, like when that kind of initial pain started, um, which was actually after a car accident.
[00:26:15] I think it just triggered some stuff, basically. Like, I think there was probably some latent stuff that was already there. I was having joint pain, but the constant pain from like 16 to 19 or so, I remember there was a period in there near the end of that, of about two or three days where the pain went away.
[00:26:34] And that's when I was like, holy shit, that how the fuck was I walking around and doing anything? How did I finish college? Like, what the fuck was I dealing with? That was an unreal amount of pain. Like the fact that for me that my 10 is passing out and that I could just function at an eight all the time.
[00:26:56] Like, what was I doing? So that was the super extreme end of it was just constant, constant, like something was always taking half of my attention. Basically, I would have said it was a great pain day. If I was at a 4 or a 5, that was awesome. That was like totally manageable. Well, when I learned about hypermobility when I was 20 and started doing physical therapy and doing other things, like there was some stuff around that I was like, oh, there are tools that I can use, uh, to actually feel better in the moment.
[00:27:29] Like, strengthening certainly helped, um, when I started PT, I could very easily reach behind me and put my whole fist under my shoulder blade. There was just nothing holding. My back together muscle wise. Um, so that was problem built some muscle. Um, but the, the main thing I noticed now is that I still experience acute pain because of my joints, you know, dislocating a little bit, which they do on a pretty much daily basis. So like my ankles, my knees, my shoulders, my wrist, like most, most of my kind of big joints will a few times a day, not like every joint, every day, basically like multiple times a day, I have something kind of slip out of place. And I'm just like, I put it back. Um, I know how to do that.
[00:28:13] And it hurts if I try to do stuff with the joint out of place. So that hurts, but that's like acute and then there's a reason for it and I can fix it. I also, I started getting really bad, persistent, chronic migraines, after being assaulted when I was 18, again, not subtle, right? My body's like, Hey, we hated that.
[00:28:33] Uh, that was terrible. And it was, it was, I actually realized pretty quickly that I would get a migraine. If I tried to make myself do something I didn't want to do. So I don't know if the PDA stuff fed into making that so extreme, but like literally if I had the thought, I don't want to do this. And I did not immediately obey that thought and like, say, no, I'm not doing the thing.
[00:28:53] I would have a migraine within an hour that would then last all the rest of the day. So it was like, and it didn't matter if I was then like, no, no, no, I won't do the thing. Like I had to, my body basically gave me a, it was like, you, you will lay down or I will, I will put you down. Like that signal was so strong.
[00:29:10] And I, Occasionally get migraines now I had very, very few for like a few years. And then lately I've been getting them a little bit more again. And I think it's because I've been pushing my body more and like trying to do more physically. Um, and I think it's a little bit, my body's way of like pushing back.
[00:29:27] So I, at this point see a migraine as like a, Oh, whoops, like I did too much. Or I was, you know, I don't consider myself a people pleaser, but everybody does it. Sometimes, you know, if I just like say, I'll go to the thing and I really don't want to go to the thing, I will probably get a migraine before the thing starts, or like, as I'm heading out the door, my body's just like, Nope, um, you can say no and stay home and have a good time, or you can be in pain for the rest of the day.
[00:29:55] Um, so that's the 1 thing where, like, I know that's chronic pain, like migraines are. And I also have tools for that. So again, like if I catch it and like really deal with it right away, it's fine. But that's the other thing I feel like I really have come up against is even with a lot of tools. And even as someone who helps other people with pain sometimes, and I know what works and I know what works for me, it's so hard to make myself do it.
[00:30:22] It's so hard to like actually do the things in the moment, especially because say it's a migraine. It's because I'm already feeling pressured or pulled. I'm already feeling a little under resourced. Like I'm not feeling confident enough to say no. And I'm like, of course, I don't want to sit here and like do the thing for 20 minutes that I know will make me feel better.
[00:30:44] No, I don't want to put my phone down. Like, I want to like, I want to feel relief, but I don't want to like work for it. I work all the time always like Regulating and helping my body and it's it's just it's like I'm super super grateful for how I feel. I didn't know it's possible to feel this good.
[00:31:01] I'm super grateful for that and Every time I have to like work to feel better In the moment, I'm just like, Oh, is it ever going to end? Even though it's like 1 percent of what I used to experience. It's kind of funny.
[00:31:16] Deb: It is funny. Like those of us in the mind body world, like when we have flares, like when we experience the human experience and we're just like, I can't possibly know more.
[00:31:29] And that does not give me the magical hall pass and it's the most annoying thing ever. The best part is to have colleagues that I can share that with and just be like, this is what's going on. I know what it is. I know why I'm having this pain flare. Like, and I don't want to deal, you know, and sometimes what other people often do or just hold that permission of like, yeah, this, it's terrible. And they also hold then the greater knowledge, which is like, it's temporary. Sometimes what I think is helpful is this pain, these experiences, these strategies of yourself. Right? So if we're a mind and a body and a nervous system, you put all that together, there's a self.
[00:32:19] There's a being that is working really hard to survive. That is the brain's job. The brain uses the body for it. You know, we're like, we're here until we're not, that's what it's doing. And it uses all of these strategies and it will just reuse the strategies that work. Right. So like, it's like, Hmm, let's look through the file cabinet and be like, Oh, that headache really works well.
[00:32:44] And in some ways it's just, it's just, yeah. Signaling to you. And what I love is like, you're not like, what's wrong with my head? You're like, what is trying to be communicated to me through this strategy that my body has learned is really effective. That's the problem with like being an expert or knowing stuff.
[00:33:04] It's almost like we're not allowed to have feelings about it. And I just say like, we're never the exception to the rule. We are always just allowed to have a temper tantrum, to be mad about that this is how it works, you know? And then oftentimes that's enough. There's always this like reset that happens when I allow and give permission.
[00:33:25] And I think that is a big part of my like inner child work, being allowed to have emotions, being allowed to be, not lady like, being allowed to be kind of like problematic, whatever that means to the family, you know, and giving myself that permission and meeting that me with so much love and care and then hanging out and watching things change, um, is often where I'm at now. I'm like, Oh yeah, but I resonate with what you're saying, which is like, sometimes it feels like a lot of work and we just don't want to have to work that hard to feel good .
[00:34:07] Since you and I both are hypnotists in those tools. What's been helpful for you, either with yourself or with others clients, people that you help
[00:34:21] Mattia: 1 thing that I feel like has been because I, I pretty much entirely work with neurodivergent people. So I'll be honest. A lot of the tools I've learned, I either don't use at all, or I use modified because they just, you know, I was like, I don't know if that's it. And then I just kind of keep playing with it until I land on the thing.
[00:34:39] Um, 1 thing that I have found. To be really helpful for a lot of neurodivergent folks that I did learn in the person we trained with, um, is, creating a safe space for yourself outside of the body. So it's actively dissociating physically, um, removing yourself to a safe place, creating that safe place, making it really, really comfortable, still letting the body be there and have its experience, but it's creating some distance and two things there.
[00:35:05] I mean, obviously dissociation has kind of a bad rap. In a lot of the world, but I would not be alive without it. Like, I can't handle this amount of sensory sensitivity all the time. Like, the 1st time I did well, the only time I've done a full dose of psychedelics, my sensory experience didn't change. Uh, it was the same.
[00:35:25] I just couldn't dial it down and everybody else. Needed a lot of like help and support and I'm looking around and I'm like, Oh, so other people, when they have the experience that I have all day, every day, they need a lot of help and support. They can't function at all. And I mean, things, things did happen, but like my basic sensory experience didn't change.
[00:35:42] And I was really surprised by that. I'm just at a 100 all the time. Um, and because I can't dial that back without some dissociation. I need that as a tool to have a little breaky break from just the intensity of feeling everything so much all the time. So that that tool that kind of like, making a space and comfortable, safe space outside of the body and just resting in it.
[00:36:06] It also like, when I was describing that. The long term constant pain when you have that or anything similar, even if it's, you know, comes and goes, but it's like daily it's, it's that sense of like, I can't get away. I'm trapped. Um, I, I need a break. Like, I just need an experience of just anything else, I don't even need it to be super positive. I just need it to not be this. So I think that tool and then that permission, like it's okay to dissociate away from this for a while. Um, and it's actually much, much healthier than some other coping mechanisms. Like it's better than drinking alcohol, for example, like in the long run for your body. Right.
[00:36:45] So that I've, I've used quite a bit. So I don't know that this would necessarily just work for people without having done a bunch of weird trancy things. But one thing I noticed was that when I started, uh, experimenting with substances that give you more serotonin, including kanna, which is legal, but like, uh, they increase the serotonin.
[00:37:07] I don't remember exactly when I realized this, but something about the serotonin when I was having it regularly and having had the hypnosis training, I can just say, this is not pain. And it just stops. And I had kind of experimented with that before the, I know it's the serotonin stuff. Cause I'd kind of been playing with something similar.
[00:37:25] I was like, okay, the brain's always involved in pain. I'm always like experimenting on myself. I was like, okay, what can I tell my brain that we'll get it to stop sending these signals? And it's almost. Too much. Like I have to be careful not to do that when I am having acute pain, because if my kneecap is out of joint, I need to pop it back in.
[00:37:47] I don't want to just walk around or like my ankle bones are rubbing together. Like, I don't want to walk around like that. I don't want to damage myself. So I have to be careful not to use it, if my body is really trying to give me an important message, but that is. Pretty much my go to tool now myself is if something's happening and I'm just, I'm checking in.
[00:38:05] I'm like, is this, does something need to change or is this just shitty body syndrome? Um, I just, I just go, this is not pain. And my, my brain just changes it into a different experience. That probably sounds ridiculous, um, to people who haven't like truly fucked around in the wilds of their own mind, but the brain could do a lot of stuff.
[00:38:26] Deb: But I think that's what's so powerful, right? Is just. Even just adding the idea, like, we can't know what's possible sometimes until it's been introduced as like, yeah, you can talk to your brain and say, this is not pain. Right. And obviously it's not as easy necessarily as waving a magic wand.
[00:38:48] There's a quality to it. There's a way of engaging. Again, it's like when we start to understand that the brain is involved and it's not just true messages from the body that gives us a lot more space to play, you know, one of the things that I do with clients is like, I talk about like, where's not pain.
[00:39:12] Like, where's not sensation, what is everything else that's not this because even for, you know, those of us with extra wiring, right? Even those of us who are more sensitive or have more sensory experiences and feel things bigger, brighter, louder, more intensely, we're still not feeling everything, right?
[00:39:39] We're not feeling necessarily the blood flowing through our veins, we're not feeling every thing that's happening in all of the organs all of the time, right? There is still our brain filtering out information. And so some of that I like to think of, like, well, how do we enhance that process? That filtering out process?
[00:40:01] How do we? Enhance that experience of desensitization. Sometimes it is through things like, you know, I think about boxers and it's like, you know, when you start boxing, your hands really hurt and then the more you do it and the better you get at it and the more it becomes a part of the whole, like your hands hurt less and it's not just because.
[00:40:22] They have like calluses or whatever, but you've trained your brain that this sensation isn't dangerous, is not a threat. And actually is a part of the fun. I don't know if boxing's fun, but the fun activity, the, the desired activity, it's like something we're choosing. Like there's, there's something that comes up for me with clients, uh, about agency, all of the time, the body is constantly striving for being in charge, right?
[00:40:50] Having agency, having the ability that. To say yes or no. And so part of desensitization, I feel like can include that experience, even for those of us with the extra special wiring, but it, and it's hard to, but it's hard to measure.
[00:41:08] Mattia: Right.
[00:41:08] Deb: Right. Cause unfortunately we are not cars and we cannot just like plug ourselves into a little sensor machine and be like, Oh, this is.
[00:41:17] This is where this wiring is, and this is where this wiring is, and this is what's happening in your brain and, you know, because the brain learns, like, one of the things from the boulder back pain study and other studies on pain when they did fMRIs, they watched pain go from one part of the brain to the learning part of the brain.
[00:41:40] So the brain is like, Oh yeah, this is what's happening. This is what's supposed to be happening. This is what , I expect to be happening. And then it just like, it gives it to you ahead of time in that predictive way. And you're like, no, thank you. I don't, I don't want that.
[00:41:54] Mattia: And I do think that's part of it.
[00:41:56] Part of what's happened in my own, you know, at this point, 20 year journey, uh, is that, that I think some of that, like learning stuff is being truncated by that. We know when I say like, this is not pain, it doesn't make sensation stop. I'm still having sensations. It's just, my brain's not going like, Oh my God, alarm, alarm, alarm, like put all attention here.
[00:42:16] It just becomes a little bit more background, a little bit of part of my experience. And I know, like, I'm not trying to sound like, you know, the four hour work week when you're really working a 40 hour week, but you're just saying it's really only four like, that's
[00:42:31] Deb: gaslighting. Yeah, exactly.
[00:42:33] Mattia: And it's actually that particular process doesn't feel like dissociation because the sensation is still there.
[00:42:39] It's just turning off the switch in my brain that's turning it into an alarm and like freaking out. And I know there are a lot of techniques and modalities that essentially use that as a, like, that's part of the central method because it works. It's just, and it's increasing safety, right? It's just saying just a little bit like, Hey, this is okay.
[00:43:00] I can have a sensation, you know, in my knee at a two and I can still do everything I need to do. And if something hurts, I can stop and I still, I still always want that, uh, protective capacity to feel, oh, this is too much. Um, and even that I've learned through trial and error and like, in physical therapy, when they're saying, don't do it.
[00:43:21] If it's too much, I always say, what does that mean in this case? Because. I can push through a lot of pain and, and, you know, and so they'll give me a number and I'm like, Oh, okay. That's actually really useful. Like this, this one actually isn't really supposed to hurt. Oh, this one it's okay. If there's like a little, you know, it could be a little bit more uncomfortable, but like, it's different for different exercises they're having me do.
[00:43:43] And. You know, I still pay attention to my body. I know I'm the expert on my own body. And at the same time, it's nice to have a professional be like, Oh no, it's okay to have like what we might call pain in this instance. Like that's actually normal and fine, but not over here. You don't want, like, if this hurts, just stop.
[00:43:59] I'm like, Oh, I didn't know that. I was, I was pushing through that one. You know,
[00:44:04] Deb: Yeah, it's so powerful because we only know what to do through the messages that we receive. Right. And there's just a ton of nuance and paradox in this work. And when we kind of offload our internal decision making to other people.
[00:44:23] And like, only let other people be the ones who are like the experts that we follow, then like our body is just literally going to scream at us. It's just going to be like, you are not listening to me. So it's really that for me, it's always about that inner conversation. So I love that, you know, those questions to ask your PT are so powerful because more information gives you a greater sense of, you know, then you're able to take that information back to your body.
[00:44:53] And be like, Hey, this is what we're doing. This is what we're going to try. And like, there's something relational that sounds kind of healing and interesting where you can see your physical therapist as a partner.
[00:45:08] Mattia: Yeah.
[00:45:09] Deb: I guess let's maybe pull back and. Say like for people who are AuDHD, autistic, neurodivergent, kind of whatever flavor of language they want to use to describe their experience.
[00:45:29] What would you like people to know about? Pain recovery, if that's a word that you want to use and like what's possible for them, I always like people to walk away with a sense of what's possible for me.
[00:45:47] Mattia: I mean, I think in general, my life feels like kind of a big hey, look what you can do in a very broad sense, um, because it did survive all of that stuff.
[00:45:58] And I am okay. And I'm, you know, feel like pretty okay on a pretty regular basis, which is pretty cool. Um, and like, you know, happy a lot of the time. So, yeah, I mean, I obviously have, have come very far. One of the things I wish I had heard more strongly when I was younger, because I feel like I didn't encounter this until well into adulthood is this idea that you are the expert on your own body and your current experience.
[00:46:27] And you don't have to do anything you don't want to do. So I was say, when I first started doing PT, pushing through pain, not knowing that I wasn't really supposed to be doing that, for example. And I didn't know when to speak up and say like, Hey, this is starting to feel weird. Hey, this is starting to hurt.
[00:46:42] Hey, this feels like too much, right? I wasn't doing that. So that was kind of getting in the way of help that otherwise might've worked more quickly. Um, so that's one piece is like, Say no, don't do things that you don't want to do. And even if, I mean, this is something I say all the time to just other ADHD people is like, even if someone is saying, they're pretty sure this thing is going to work for you.
[00:47:04] If your brain's just like, I don't think so. Just don't even try it. Don't even try it. Like, don't, don't waste the time. Your brain is giving you correct information based on a large amount of pattern recognition. So just don't do the stuff you don't want to do. And then on the other side, there's this big idea around.
[00:47:22] What is our actual capacity and what are we really capable of? Like, I don't mean that in like a career sense. I mean, in a literally what, what can your body do? And I have always felt very frail and weak and like, I can't do a lot physically for good reasons. And the more I do, there is, there's always this edge, like learning edge or growth edge where I'm like, I can't tell if this is worth.
[00:47:53] Pushing into and like being really exhausted and sore and tired. And then maybe this will actually be muscle growth that like supports me later. So I do feel like there's this really interesting balance between if your brain gives you, or your body gives you a hard, no, don't do the thing. And if you're like, if there's curiosity there and you're like, Ooh, I wonder if I could do this, like, I wonder if this is possible for me and trying it.
[00:48:17] If that feels safe enough, that has been where I feel like a lot of my actual pain decrease has come from is essentially being willing to do that. Um, including just moving more. When really my body wants and needs a lot of rest and a lot of horizontal time, like that's great. And I have to move to, like, maintain my muscles and, uh, and have low pain.
[00:48:42] So it's this really interesting balance where like. There might be a lot of things possible that you just can't perceive right now because you're, you're too many steps away from it. And don't let anybody push you into that thing just because they look at your body and say, Oh, you should be capable of this thing. It's a much slower journey than I hoped for. It did work.
[00:49:08] Deb: I love that. I think there's probably so much powerful learning inside that experience that kind of spreads out and filters out through different parts of your life. That's what happens for me when I like show up at the gym and I'm working with my trainer and I have a place where I, where I feel that no, where my body is just like, Oh no, I can like recognize that.
[00:49:35] And now, because I, she's a trauma informed strength coach. And because I'm a former body worker. I have a lot of knowledge. I feel very empowered to be like, let's figure out what this no is. And that's become a place of like fun, kind of a weird kind of fun, uh, but certainly fun because I like that feeling of feeling empowered and, and also like trusting, believing my body, having that conversation, being like, I got your back.
[00:50:05] And I do think there's something here that we can like figure out together. And sometimes the body's like, no, I said, no, let's just move on. And I'm like, okay. You know, and building that again, that kind of conversation. And it only like learning only happens through learning, right? We only get to know that through those little like invitations of exposure.
[00:50:31] It's too much is too much. And everybody's too much is, is different.
[00:50:38] Mattia: Yeah. Well, you just said also made me think of another really important thing, which is that doing a tiny amount of something or the tiny version of something is. So worth it if it feels good. So for example, I'm not really supposed to stretch because I can like really hurt myself if I stretch very much, but I love doing like little, I know you can't see me moving, but I'm, I'm just tilting my neck.
[00:51:06] Like, I don't know, 10, 15 degrees side to side. When I do little things like that, they're not traditional stretching, but it's movement and it feels really good. To me, I also love doing, I have like a little, it's like a little elliptical, but just the feet because that I can't really run, but I can like, you know, move my feet in this little circle motion.
[00:51:24] And I've been doing that for five minutes at a time. That's not enough. I don't get a, you know, runner's high from that. I don't get like cortisol flush. Like, it's not really a lot of, you know, Exercise, but it feels so good. And even if I do 10 minutes, I've noticed, like I've experimented with like small amounts of time.
[00:51:43] I can actually get a lot of the benefits from like 10 minutes that I hear people talk about from longer exercise. So I feel like. We're so used to like, our culture is so weird about movement and exercise and diet and all the things I know, you know, this and you talk about this, but like,
[00:52:00] Deb: yeah,
[00:52:00] Mattia: it it's so like a little bit if that's what feels good for your body.
[00:52:05] Like, my body just doesn't have a lot of stamina and I don't want to push it and then not be able to think. Later, so I have to, you know, work with what I have and I also do identify as disabled and that I think is a hard transition to see yourself as disabled, but it also helps me be like, okay, what is my actual capacity within that?
[00:52:29] I'm not trying to look like a neurotypical person. I'm not trying to look like someone who doesn't have a connective tissue disorder. Like these things are, you know, in the, put the pot stuff. It's like that affects. Um, exercise and energy and like brain fog and all these things, it's like, I'm not trying to not have this body and what can I do within this?
[00:52:47] And a lot of that for me means little things and things that other people would look at and be like, that's not. Exercise. And I'm like, well, this is what I can do and it feels good. And I would rather do this than nothing
[00:52:58] Deb: inside my brain. There's like, I there's like little fireworks going off. I'm so excited that you named that because. I hear so much from so many people, it's not worth doing like a minute of something or a few minutes of something. It's not enough. I got to come up with a good term for it, but it really is this, like, the kind of fitness reporting, the kind of like, you know, FITSPO, whatever stuff like is actually contradictory to science.
[00:53:36] Right? Like there's studies that say like we can affect our blood sugar the most with a five minute walk after a meal. Not a 50 minute walk, not even a 15 minute walk, a five minute walk. And instantly, because our culture says five minutes is not enough, that gets dismissed. And there's this kind of comparison and, you know, feeling less than experience where what I'm hearing you say is it feels good to move.
[00:54:12] And isn't that incredible?
[00:54:14] Mattia: Yeah.
[00:54:15] Deb: That you have discovered this way of feeling good.
[00:54:20] Mattia: I keep having this thought this is a throwing, throwing my extremely radical politics out here at the very end. But I keep having this thought when I'm at the PT and there's all these people like working out around me.
[00:54:29] I'm like, if we were all putting the energy that we put into quote exercise and like fitness culture, if we were putting that into growing food. And like caring for each other, we could immediately divest from all the shitty systems. Like we have so much energy that we're putting into quote exercise to look a particular way.
[00:54:49] And it literally, if we were like growing potatoes and taking care of each other instead, which is anyway, I keep having that thought. And there's
[00:54:56] Deb: so much, I mean, and also if we had systems of care, there would be less chronic pain because our bodies would not be sending threat messages and signals all the time that we're not safe.
[00:55:09] So I'm right there with you. You know that I can talk forever and I can talk to you forever, but I feel like this is a great place to stop because there's so many beautiful threads and pieces of hope. Like spread throughout this message. And so here's my last question for you, which is how do you help people?
[00:55:31] Who do you work with and how can people find out more?
[00:55:35] Mattia: I work mostly with AuDHD people, but also lots of people who are sort of questioning in that realm. So you don't need a diagnosis. If you, you know, a lot of people say have an ADHD diagnosis and think they might be autistic, or they're just ADHD, like anybody kind of in that world, that's what I know best.
[00:55:54] And the main thing I help people with is building a sustainable life. So I know that's very broad, but, you know, working with the brain and body that you have basically. And I do work with people one on one. I also have a course called love your brain, which is for people who, who kind of want to jumpstart that process of like learning how to make their own process to do projects. I know that sound it's, it's much more fun than it sounds, but getting through that as a multiply neurodivergent person has always been tough. Um, and I, I designed that course before I started stimulant medications. And I always want to tell people that because I'm like, I made this to work, even if you're not diagnosed or medicated or whatever.
[00:56:39] And then the other space that I have that I've just loved so much is called like your brain. And it's a peer support social space, basically. So there is a little bit of learning and coaching available, but it's mostly for peer support, hanging out and just being with people who are like you. And I love that space so much.
[00:56:57] Deb: I think that's amazing. I love that you're creating a space for people to like, Both engage actively, but also be in community. Those things are super important. So thank you very much. And they can find you on.
[00:57:13] Mattia: AuDHDFlourishing. com A UD HD flourishing, uh, like flourishing a saber. I don't know. Um, I'm not good at spelling.
[00:57:22] I'm not going to try to spell that word right now.
[00:57:25] Deb: There'll be a, there'll be a link. People can just go clicky clicky. It'll be super fabulous. And I highly recommend listening to your podcast because I mean, as we know, like learning requires repetition, change requires repetition, just hearing things, even if they're things that we like already know, we hear them in a new way and it definitely like moves through our body. I know that I learn and listen with my entire body. So that's kind of my way. When I realized that, uh, lots of things got better. Yeah. And so, yeah.
[00:58:03] So thank you so much. I really appreciate this.
[00:58:07] Mattia: Thank you.
[00:58:07] Deb: Thank you everybody. I wanted to add at the end that there are recovery stories in the mind body medicine sphere that show people recovering from POTS, from mast cell activation, from the pain with Ehlers Danlos Syndrome.
[00:58:27] There's so much that we don't know about the mind body connection, about the effects of threat physiology, and the temporality of it all. So what I would like to do, as I always do, is I never want to be a limiting factor in how well anybody can feel, and what their individual journey can look like.
[00:58:52] So, when I share these stories, I really want people to take what resonates for them, what works for them, and what helps make those neural connections between their experience and the interviewee's experience and help build a bridge for their own mind body experience.
[00:59:15] So, I know Mattia spoke of many things. One of them was building a safe place outside of the body. So, in hypnosis or even in mental rehearsal or maybe you do this in therapy. This idea of creating a safe space, right? This is a practice that is used in many different forms. And so creating one that is personal to you and practicing the ability to shift your attention and awareness and embody and be in that space and toggle back and forth. Those are incredible skills. And so I hope that you pick up from Mattia's interview, ways that you can help yourself. And then I am also going to be linking in the show notes recovery stories from other people who have dealt with these types of illnesses or symptom groups and I'm not sure if people identify as AuDHD or not.
[01:00:17] So my invitation of course is always to take what works for you, leave the rest. I never want anyone to say because I have X diagnosis or because I have X personality this means, Y? This means I can't feel whatever. I just want to hold an expansive view. None of this is meant to disparage anything that Mattia is experiencing or has shared, because that is also really important to me.
[01:00:48] They are the captain of their own ship, and none of this is to say like, oh, well, you know, they should be feeling better or different, because that is not what I am saying. But I do want to share examples of people who have experienced maybe a different level of recovery or a different level of change and shift in symptomology, just to see if there are other bridges that can be built for you in your experience, and you can start to apply those lessons and those ideas for yourself. As I continue to grow my work and work with other people and come in contact with, more and more people who are also on this journey, this mind, body healing and recovery journey, I'm really excited to bring you their stories as well. Thank you so much.