Ep. 5 What Happens When… Anxiety?

Join Gem for this episode, "What Happens When... Anxiety?".

Whilst going through a particularly bad breakup, Gem realised they experienced incredibly high levels of anxiety most of the time. Gem reflects on what has helped them (mostly) cope better with anxiety, including the impact of sensory regulation and exercise and understanding monotropism. They also talk about the grief that can come along with realising anxiety as an Autistic person might just be here to stay and detecting those sneaky default worries that pop up when the coast is clear.

Thank you so much for listening! I'd love it if you'd consider sharing and reviewing this podcast!

Find out more about me and my work at www.gemkennedy.com and @thegemkennedy in all the usual places.

Helpful links:

Monotropism: https://monotropism.org/

Some great books on sensory and emotional self-care for Autistics:

The Neurodivergent Friendly Workbook of DBT Skills by Sonny Jane Wise

Looking After Your Autistic Self: A Personalised Self-Care Approach to Managing Your Sensory and Emotional Well-Being by Niamh Garvey

Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask! by Megan Anna Neff

Transcript:

00:00

Good morning. I'm just recording this from bed, which is really nice. Yesterday, after I finished the gender episode, I had a bit more of a drive, and again, I felt like I've got it all out now, just waiting for the next rise of creativity to come. And yeah, I didn't really feel like recording much for the rest of the day, so I had a massage, which was super nice, went to the gym, and then came home and had a takeaway dinner. So it was a good a good evening.

01:01

I didn't sleep super well. I had, I think, a lot of bad dreams. And then I woke up this morning feeling really anxious. And I was like, no, why am I feeling anxious? I'm feeling so calm and well rested for most of the time that I've been away. And then I realized, like, oh, that's the next rise of creativity is to talk about anxiety. So yay.

01:33

It's weird for something to be so present in your life, I guess, and to not really talk about it so it makes sense for it to come up here. And especially when it's been such a massive part of my life in recent times. Yeah, I guess it's "What happens when... Anxiety?"

01:53

So for me, I didn't even realize that I experienced anxiety until until about five years ago, when I was ending a relationship and I felt so stressed and so anxious, and I remember talking to my sister about it and saying how I was feeling and kind of thinking is this anxiety? Like, I don't know what that is, but I actually ended up taking some medication, like, it's a short term medication for experiencing high levels of anxiety. I'd never taken any kind of anxiety medication before, and I took it, and I just remember even trying to think about the thing that I was worried about before, you know the breakup, and  how distressing that was and stressful, even trying to think about what I was stressed about before was... there was nothing. I wasn't anxious at all, and just experiencing that huge contrast between how I had been feeling and how I suddenly felt, really highlighted to me. Wow, I feel like that most of the time in my life. And, you know, granted at the time we were sort of at the beginning-ish of the pandemic, and I was getting divorced and, you know, a parent to two young children. So there was lots of things that were stressful in my life in different ways at times. But yeah, it really highlighted to me that how I had been living my life up until that point was a state of high alert constantly.

03:43

I worried about everything without realizing and it was really difficult for me to access times where I would feel calm. I definitely did access times of being regulated, but I think because I didn't realize how bad my anxiety was, I was just living up like a constant baseline of super anxious.

04:06

So I had that experience, and it really highlighted to me that I needed to figure something out around anxiety, because it was really not good for me. And then over the years, I feel like I've been aware of it, and there's been times where I've been much calmer and anxiety has been much more manageable, but I think what made a massive difference for me was over the last few years, realizing that I'm Autistic and that anxiety can be a massive part of Autistic experience, and that there are things that you can do as an Autistic person that can help regulate emotions and anxiety that maybe, had I not come across being Autistic, and had I not understood, other things about that experience that I wouldn't have known would help with anxiety.

05:00

For me, I know people will say, oh, you should move your body. That's really good for mental health. But for me, because I struggled with sensory aspects of exercise, for example, getting sweaty has been something that I've found really uncomfortable and horrible. And it's not really about other people seeing me sweaty, it's like how it feels in my body. So that was one of the things for a long time that put me off exercising. Another thing, well, lots of things put me off exercising for a long time, including horrible P.E. experiences, feeling a lot of shame around what it meant to be exercising in a larger body, what people might think about it, all of that stuff and tying exercise, I guess, to a sense of punishment and a sense of just disordered eating and I'd never really, even as I had gotten better over time with my eating disorder stuff, and, you know, done a lot of work around that, still exercising would tip me back into disordered eating kind of patterns.

06:12

So I was really aware of all that, but what I hadn't considered or really understood was the impact that regulating my sensory experience would have a massive impact on my levels of anxiety. So I remember when I first started doing some weight lifting and feeling like such intense input in my body, I noticed that I felt so much calmer afterwards, and looking into that more and and doing it more as well means that now I really know that movement in particular ways that feel good to me are really, really helpful for anxiety. So if I've lifted really heavy things, I feel much calmer and much more regulated for quite some time afterwards.

06:58

And there's some really good research around in order for our sensory systems as Autistics to feel more regulated, there are two senses that are especially good to focus on. So one of them is proprioception, which is where our bodies are in space. So anything that gives your body a sense of that, for example, it might be like carrying a heavy backpack or having a weighted blanket on or lifting weights, leaning against the wall, deep pressure, massage, whatever it is, just anything that gives your body a sense of where it is can be really helpful for regulating your proprioceptive system.

07:36

And also vestibular. So your vestibular system is all about balance. And anything that you can do where you're kind of getting your head below your heart and challenging your balance is really helpful for regulating that system. So things like some people will do yoga or stretching or Pilates, or hanging upside down off your bed or sitting upside down on a chair, doing lots of spinning, all of those kinds of those kinds of things are really good for regulating your vestibular system. And it was only when I found this out afterwards that I realized why weight lifting, or power lifting, for me, is so regulating, because it's giving me really good vestibular and proprioceptive input, which means then that the rest of my sensory experience is more manageable. So, for example, sound is more tolerable, or, you know, other things like touch. I might be more able to tolerate uncomfortable clothing, for example, if that was something that I had to do. I mean, I just wear clothes that are comfortable, because I spent years trying to wear clothes that were uncomfortable and horrible.

08:40

Anyway, I found it really helpful to understand the importance of movement from a sensory perspective, that helped me move away from something that was connected to dieting and thinking about the size of my body into something that is actually really good for me, almost like thinking about it like a physical therapy or like an accommodation. So movement has really helped with anxiety, for sure.

09:08

And I guess one other thing that has helped me understand my anxiety better is learning about monotropism, and if you haven't come across it before, it's a really interesting and super helpful theory for explaining more about the Autistic experience, and essentially, monotropism is the idea that Autistic people are more likely to be monotropic, and that means that they are able to go incredibly deep on a small range of subjects or things. So it means we can hyperfocus on things that we're passionate about and go super deep into them and learn loads about them.

09:48

And obviously that can be incredible and an amazing skill, like we can become experts essentially in things, because our interests drive that kind of need to, like, learn all the things about it. And interestingly, I think I feel like that is what happens to people when they find out that they're Autistic, they then, like, go super deep into it and often learn all the things about it. So it's kind of such an interesting example of having a monotropic experience whilst trying to figure out whether we're Autistic.

10:18

So there's, yeah, monotropism and other people who are not monotropic are polytropic, and they are able to move between different topics, a wider range of topics, more easily. And so they don't necessarily find like transitioning away from things hard, and they don't necessarily have the same deep level of hyperfocus that a monotropic person might have. Not to say they can't focus on things or anything, but just it's different.

10:46

And monotropism means that our nervous systems are interest-based, so we find it really difficult to focus on things that are not of interest to us, so we're constantly kind of looking or scanning for those hooks of interest that will bring us in to being able to, like deep dive on things. And that's really handy if you are wanting to learn things or engage in things that you're passionate about. That's super cool.

11:17

Where it can become tricky and this is what has helped me understanding my anxiety better is that we can also be looped into or hooked into things that are not of interest to us, in terms of, we're not passionate about being anxious, but they are thought loops, or, you know, tracks that we can end up going down, that we get stuck in and because of how our brains work and how they focus, it can be really difficult then, to move away from the thing that we're struggling with.

11:49

So for me, I will have constant thought loops, for example, about a particular thing, so over the last four months, like about the, you know, this kind of moral scrupulosity, whether I'm good or bad. It'll be going round and round and round and round, and it's hard, incredibly hard, almost impossible, to move out of that track and every time I do when I'm in those thought loops, my brain will just whoosh like very easily get brought back into them again.

12:23

It's a bit like, if you find a new passion and you just want to do it all the time. You're so interested in it and so energized by it, and whenever you get the chance to engage in it, you're just like, "Woo, yay! This is amazing." But imagine that, if this doesn't feel relatable to you, imagine that with a thought that is distressing, and that you... or a situation that's distressing, and you just keep ending up back there, kind of ruminating on it over and over and round and round. It's horrible, and it can feel like your mind isn't your own, and it's the perfect example of where a lot of mental health interventions that work maybe for other people are not effective for Autistics. So for example, like using some CBT theories or thinking about, you know, distract yourself, or just sit back and watch the thoughts go by. It's so distressing that you it's not really as simple as just being able to sort of unattach or detach yourself from your thoughts, and that's definitely something I'm still working on, like, how can you manage anxiety when your brain is stuck in a monotropic thought loop that is something distressing or something anxiety inducing?

13:38

And generally, the situation that I'm worried about turns out to be much less drastic or much less stressful than all of the eventualities I've imagined in my head. But it's almost like because as an Autistic, the unknown can be very, very difficult, there's something in kind of rehearsing and going through all of those different awful outcomes and thinking about how you might cope with them, or how that might be, that is part of the process, like part of the resolving of how distressing it is.

14:13

So I guess, what am I saying? I'm saying that so far with anxiety, understanding my own anxiety, definitely, movement has helped, and definitely understanding my monotropic brain has helped.

14:27

There are other things that have helped as well, like, I guess, recognizing that that is what is happening for me, that I'm in an anxious experience, and having people around me that I'm able to tell about that because for a long time I didn't realize I was anxious, and then when I did realize, I felt maybe other people wouldn't understand, or the worry or the situation wasn't big enough. But actually being able to voice worries is really helpful. I often think just having that if you're able to access it, just external kind of verbal processing, if that's how you like to process things.

15:07

So that could be recording yourself talking and then deleting it. It could be, if you prefer to write things it could be writing, it could be talking to a friend, family member, whatever it is. But having some kind of externalization of what is going on has been really helpful to me.

15:25

This isn't really supposed to be like my my tips on anxiety, I guess it's more sharing the things that I've noticed have helped me.

15:36

I definitely think, also coming to terms with accepting that some days are going to be worse than others, and that there are some things that make my anxiety worse. So for example, I know that caffeine and alcohol make my anxiety a lot worse, so I don't... I'll occasionally have Diet Coke. I barely ever drink alcohol, because just not worth... well, I don't particularly enjoy it when I drink it, but it's not worth what happens the next day for me.

16:05

Last year, I had a brilliant time going out. I went to a queer bar in Berlin, and it ended up being... I accidentally was there for a queer speed dating event, and at the time, I was in a relationship, so I wasn't like there for this, the speed dating. I just was chatting to some of the people, and it was a bar called Silver Future in Berlin, and you wrote down on a little piece of paper if you were interested in someone. So you could pick, for example, like table seven, the person with the hat you're cute. And then you took your little note, and you pinned it to this kind of carousel that was going around the top of the bar, like around the ceiling, and then the notes would travel round and, you know, table seven, when the note got there, they would take it off, and then the person would read it, and then they could send one back. It was so sweet, and it was so lovely just to see queer people like connecting with each other and stuff.

16:59

My point is that I had, I think, three or four alcoholic drinks that night, which is a lot for me. And I had a really good time at the time. And then the next day on the train, I remember messaging my partner and being like, I'm having panic attacks like constantly. It felt so distressing so I really notice the effect that alcohol has on me. Maybe it didn't before, I don't know, but certainly in recent years, it's really identifiable. So I avoid that personally, and the same with caffeine.

17:34

So I think accepting that some things increase my anxiety. Also accepting that there are some situations. There are certain things that I in the past would have always said yes to, and then have felt super anxious about them in the lead up to them, probably gone to them and then been fine, but kind of that experience of the anticipation of the thing really now being quite strict with myself and thinking, Okay, you're probably going to worry about this for three months before it happens. Do you want to take that on? Is that something that you think is worth doing? Or is there something else you'd rather do with your time and energy?

18:14

So I guess I know, for me that going into big cities at the moment feels not very good. For a long time, I really enjoyed going into London and going to, like drag events and queer comedy and, you know, lots of different stuff. But now, currently, that's something that I find quite stressful, just being around a lot of people. It's like a lot sensory wise, so I tend to not do it. And I'm sure there will be other times where I'm kind of more into that and will have less anxiety around it, I don't know. But also coming on this trip, having that conversation with Ashley that I mentioned in the first parts of the recording. Actually being able to talk through the things, the kind of general anxious feeling, and then be able to think about things that would help. like I know now that having a meal on the first night that was familiar to me because my mum cooked it, having that made a massive difference for how I felt and how settled I felt. Having things around me and unpacking so I could visibly see what I had with me and how those things were familiar again was really helpful. Having a tea with me that I really love to drink was really comforting. So those kinds of things that in the past I don't think I would have considered necessary or I wouldn't have allowed myself to access, actually have made a massive difference to my levels of anxiety whilst I've been away.

19:45

So it's kind of coming at it from lots of different angles, I guess, and I'm trying to think if there's anything else I want to say about anxiety. I mean, it's really stressful.

19:59

Often I think of how life would be if I didn't experience anxiety. And I think there are some people, so I hear, in the world who don't live in a constantly anxious state, and that must be so I don't know, like, liberating, or maybe not, because that's just how they are so they don't know. But, yeah, I find it really fascinating to think that there are people that don't experience constant anxiety. And I definitely would have said that I wasn't someone who experienced constant anxiety until I experienced an absence of it, and then was like, whoa this is really bad.

20:35

Even as I've talked for the last 20 or so minutes, I can really feel that my anxiety is less. I'm feeling more present, feeling more in my body, feeling like I have less thought loops.

20:52

Maybe the other thing I would add is that I don't know about for you if you're someone that experiences anxiety, but often I will have these sort of immediate situations that are causing me distress, so things that have happened that I'm worried about, or things that are going but you know, could happen. And then there are these kind of reserve anxiety things that pop up when I don't have anything else to worry about. So for example, my go to is always that I'm probably a terrible parent, and in what ways have I traumatized or upset my children? Even though I work incredibly hard to be the best parent I can, there's this sort of narrative behind that that is like, well, you're actually just a terrible parent. So even that kind of having these immediate situations like I can feel that probably that anxiety will build for tomorrow in the transition of going home, even though I have nothing to worry about in going home. I'm just going back to my house, which will just contain me until the next day. There's sort of a nervousness and an anxiousness that will build, and when that dissipates, then probably something else will take its place, which will be, you know, a go to worry of like, how I'm maybe a terrible parent, or did I upset someone five years ago in a particular thing, or did I, you know, what did I do in that situation? Was that wrong? There's always things to take its place, and I think that's the exhausting thing as well. Like, there have been times where I've been stuck in these really, really distressing, sort of anxious thought loops, and I've thought, once this situation is resolved. I'm never going to worry about anything again, because I will have been through something that's so awful or so stressful that I'll know not to worry in the future, or I'll know that I can handle things in the future, and that day, just so far, hasn't come. I'm definitely much better at managing anxiety and recognizing what it is. But yeah, the sort of ongoing presence of it... and I think this is what can be so painful for people when they are diagnosed as autistic, because often if people have experienced anxiety and depression, for example, they can think they just haven't accessed the right therapy, or they just haven't found the right combination of things that work for them, but as soon as they do, then they won't feel like this anymore, and everything will be better. And I think there's a real grief in realizing that we're Autistic and that anxiety can be a very big part of our experience. It's like, oh no actually, this is an ongoing, sort of lifelong experience. Not to say we'll always be anxious, but it isn't a case of just finding something that will fix it, you know, we can't just take a medication, or we can't just, I don't know, do a particular thing and then... or process enough trauma, and then we won't be anxious anymore.

24:01

I don't want to say that I'm always going to experience anxiety for the rest of my life, because that feels quite stressful, but I'm assuming that that is the case. I'll just hopefully get a bit better at managing it, and at other times I'll be a bit worse at managing it, because things will catch me by surprise, or there'll be situations I haven't experienced before that I don't have the same kinds of things to call on or to reassure myself about.

24:26

Yeah, so that's my thoughts on anxiety. If you are someone who experiences it too, then solidarity, because it's really shit and really hard at times. So yeah, I hope that you're able to find whatever combination of things that you need to help you manage it better and feel more supported.

24:49

That's it. Thanks for listening!