Managing Chronic Ilness As A Musician

After wearing a brace on my Instagram, you guys asked what it is, and so today we are diving into my experience with Hypermobile Ehlers-Danlos Syndrome as an oboist.

Transcript

Welcome And Personal Journey

SPEAKER_00 0:00

Hello and welcome to the Confident Musitioning Podcast. My name is Eleanor and I am a British American oboist studying at the Royal Conservatory of Scotland. Literally my dream school. And it took me a long way to get there. I applied and auditioned for 12 schools in three different countries. It was a lot of hard work. But oh my gosh, so worth it. I want you to have the confidence to work hard in achieving your goals. So come with me as we go on this journey together. So sit down, pull up a chair, take a seat, or if you're on the go, welcome to the Confident Musitioning Podcast. No matter whether it is visible or not, people with chronic illnesses are everywhere. We exist everywhere, including the music space. You guys on my Instagram and TikTok have noticed sometimes that I wear a brace when I play the oboe and have asked about it. Honestly, it's probably one of the most asked things that I get. And I like that because that means you're curious about that and we can talk about it. So today we are gonna talk more in depth about this, about why I wear a brace. Spoiler alert, it's because of a chronic illness. Um, and being a musician with a chronic illness. I have quite a few chronic illnesses. I have a bit of a list, but today we're gonna talk about the one that affects my ovoplaying the most. Okay? Let's dive right in. So the chronic illness that I have that affects my ovoplaying the most is called hypermobile Ellers Down loss syndrome. And that's a lot of fun big words that basically mean that all my connective tissue in my body, so like all of the kind of tissue that keeps your bones together, keeps your muscles together, your ligament, like all of the things that keep other things together, they don't really work as well in me. Um what that means on the outside is that I'm like double-jointed. Um, it means that I can like you know bend my wrists backwards and my thumb backwards and all of these things. On the inside, however, it means that I have um a brain malformation. It means that my brain is falling out the back of my head, like the back of my skull. Um, yeah. It also means I have like things to do with my heart that are bendy and my intestines are bendy, and that can cause issues, right? So I feel like with with Eller's Downlow syndrome on the outside, it's like, oh, you you can do these cool party tricks, but on the inside there's there's a lot of issues, and including those issues, well, part of those issues is pain, right? I get a lot of pain, a lot of pain, and that kind of leads us to the oboe side of it. So because my kind of joints can't really stay together, um, my muscles try to fix that. So, like if my joint doesn't stay together and it's starting to come apart, the muscles around it will try to kind of um hold it together and they they get really tight and they seize up. And when that happens, um it's extremely painful, and I can't really move that bit of my body. So my shoulders seize up constantly, like a lot. Um, and when that happens, I can't move my head, I can't sit up, the weight of my head is so heavy on my shoulders because the muscles are trying desperately to keep my joints together, um, and that can affect my oboe playing. Um, but from the idea of the brace, so I wear a brace on my on my wrist, and that is oh well, it's on my wrist and my thumb, kind of like a whole thing that kind of comes up and covers part of my hand, and the reason for that is the weight of the oboe on my thumb and on my wrist mean that my joints in my thumb and sometimes my wrist start to come apart, and that's quite painful. It is quite painful when I play. I have this strange sensation in my thumb that like things are are coming apart because they are, um, but it's really uncomfortable and it's really painful and it affects my elbow playing. And so the reason why I wear a brace is so that it's basically like an exoskeleton, it kind of helps my joints not have so much pressure on top of them from like the oboe to that, and that helps them to kind of calm down a little bit and it kind of eases some of that pain. So that's kind of the overarching thing about it. And you have asked me, you guys have asked me a lot of questions about this, and I thought, you know, I've done some videos about it in terms of like um on Instagram and TikTok, but I was like, let's do a longer form thing about it because the video, like from doing that video, I got so many messages from people who also have either hypermobile LR's down loss or conditions similar to it. We like chronically ill musicians are everywhere and we kind of have just like things that we just need to take care of, like me with my brace, like this is just something part of my life. Um, playing the oboe, pain management is just part of playing the oboe for me. Now that I just want to do a little side note is chronic pain. It's not because I'm injured, I haven't gotten injured, and that's why I I have pain, but it's a chronic thing. Um, this just how my body works, right? So that's just kind of there, there is a difference, and we will get to that, but that's important to note. So, yeah. Um what do I do in my practice? Let's talk a little bit about how I manage it. Um, so I do wear the brace. Um, that's a big important thing to do for me because that makes it so that I can practice for longer before getting in pain. Um, I also take breaks. I do take quite frequent breaks. Some of these breaks are literally just 20 seconds, so my um joints can kind of have some ease. Um, sometimes these breaks are longer, so let's say um let's say I've been playing for a while and I need like a 15-minute break, a 30-20-minute break if I if I really need that. Sometimes I need to like take you know a rest day. That's an important thing. If I if I wake up and my like sometimes with with my chronic illness, you go through phases, so sometimes it's like okay, I'm falling apart more, falling apart less, falling apart more, falling apart less, etc. And so from there, um, sometimes I'll I'll literally just need to take a rest day, and that's perfectly fine as well. Um, but taking those those breaks whenever I need them, kind of doing my um practice differently. So I might um not be the obo student or the music student to be in a practice room for two, three hours at a time. That's not me. My practice sessions tend to be much shorter because of this, but maybe more frequent. So it's kind of um like that. That's kind of how it works. Um, having that that break in between can be really helpful. So that's kind of how I do it with practice. More generally, advocating, advocating for your needs. This is such a kind of big idea, and sometimes it feels daunting. Um, but asking for my needs, I think that's so important. If you are a um musician with a chronic illness or a person with a chronic illness, like I mean, this podcast is about musicians, but you know what I mean. Like, um, if you are if you have a chronic illness and you are in school or you are in university or conservatoire, it is so important for um the school and the the institution to know about it. Um, for me at the Royal Conservatoire of Scotland, there is like a disability officer. I have a plan put into place um so that I can have support, which is so amazing. These things there there are kind of um uh programs and and things to support students with chronic illnesses, it is important if you do have a chronic illness to look into that, whatever it is where you are, because you know it's so important to get support, and if something can be done differently or like be taken care of in a way that's gonna help you in your learning, that is so important. So advocating for my needs, for instance, if I am in a rehearsal, um and I know it's gonna be a long rehearsal, and maybe that day particularly I feel like okay, you know, I'm really struggling with pain. I will tell whoever is um in charge, or maybe I'll tell the conductor that you know I have this thing. If I need to, you know, take 10 minutes, five minutes to go for a walk, then that's gonna help me. The reason why I just realized I haven't told you the reason why. Um because my my joints come apart, if I sit for too long, my my bones literally start to come apart. Um, like and and my back just kind kind of relaxes, but in not a way it should. It just kind of things come apart. Um, that hurts. That really hurts. Like sitting for too long, basically doing being in the same position for too long is quite painful. For me, sleeping can be painful um if I don't move. So because my my body is literally just I'm like, you know, like when you see cats morph into shapes because things just kind of they're like jelly, it's kind of like that, like like that. It's kind of just like um joints and things just kind of come apart because they haven't been moved that often, and so or that long. And so when I am sit sat in a rehearsal, um, especially like my back will start to really hurt because things are coming apart, and I it's it's kind of a support for me for the people like people, maybe not the entire orchestra, like we don't need that, but um the conductor at least, maybe um someone else who's there who's like running it or something like that. To know this if I stand up and leave, um, it's not because I'm done with everything, it's just because I'm in pain and I need to stretch or just walk around a little bit. Um, so advocate advocating for for your needs is super important and it makes life better when you have um support, seriously. The last thing I want to leave you with of the in this, I think this is an interesting episode because I feel like it's not really our regular episodes. Usually I'm talking about you know practice strategies and audition strategies and mindset, but this is a big part of my musical life and just life in general, dealing with these with these illnesses and um navigating them. I think it's so important. And if you have a chronic illness, or maybe you think you do, um, that is so important to kind of look into that and support yourself and ask for support if you need it. Um so before we before we go, let's talk about what to do if you are experiencing pain, because there are two kinds of pain, okay? The first kind is um what we've been talking about, which is chronic pain. Okay, this is because you have a condition. I have hypermobile Ellers Downlaw syndrome. I am aware that my joints don't stay together, I am aware that this creates pain. I have been in pain my whole life. Um, like I know this, right? This is not anything new. That is chronic pain. You can't really go, um, you like if you rest, it won't get better. Do you know what I mean? The other kind of pain is um pain that you get from an injury. So if you are playing too much, you might get an injury, and that is different from chronic pain. That you you should 100% listen to that in a different way than chronic pain. If you have pain from an injury, then you need to listen to it, you need to get support, it's so important, and don't like keep playing. Do you know what I mean? Like, take a break, take a rest. It's just like if you um, I don't know, were running around and you fell and you, you know, twisted your ankle and your ankle really hurts. Um, you don't get back up and and run around and keep, you know, doing whatever you were doing. You're like, ow, my ankle hurts. I'm gonna rest it, I'm gonna ice it, things like that. Um, that's that is pain from an injury. If you are experiencing pain from an injury, it is very different from chronic pain. And that is something that needs to be taken into consideration, and it is so important for you to ask for help with that. So if you are experiencing pain from an injury, please do ask for help with that. That is really important that you do not ignore that pain, okay? Today we talked about chronic pain, which is not from an injury, and also resting does not get make it any better in the long run. So um that is a difference, and I think it's so important to talk about that difference. Um, both need support, both need help, um, you know, but different kinds. One will heal, one is chronic. Okay. Alright. I hope this episode was helpful for you. If you do have um a chronic illness, um we we're twinning, I guess. If you have a chronic illness, um or if you have experience with something like this, I'm so glad you listened to this episode because it is so important to kind of bring awareness to this and also bring it into the conversation. I don't think, especially online, we are talking about this enough. So I'm glad that I was able to make this. Um, and I'm glad that you were able to listen to it. Um, I'm so grateful that you were here. Alright, that is about it for this episode. Thank you so much for hanging out with me. I am so grateful that you did. Um, if you enjoyed this episode, please do like, subscribe, comment, share with your friends, with musician friends, someone you might think you you think might need this. Thank you so much for listening, and I will see you in the next episode. Alright, take care. Bye bye. Actually, can we just note as I'm saying this, my wrist has come apart. I just tried to um I just tried to like turn off the audio and my wrist just came apart as I brought it down. Fun times.