Episodes
EP007 → Ronaé Fagon On Navigating a Medical System Not Set Up to Cater to a Mystery Illness
In this episode, we talk to Ronaé Fagon, a sustainability thought leader, illustrator, fashion designer and co-founder of the sustainable e-commerce platform SlowCo. We talk about Ronaé’s experience living with a mystery chronic illness for which she’s yet to receive a diagnosis, how grinding at a demanding job contributed to burning out in 2018 and what it’s like to navigate the medical system when you don’t have a diagnosis.
TRANSCRIPT
Nora Logan: 0:01
This is So, Life Wants You Dead, a show that explores the intersection of illness, disability, healing and creativity. Seven years ago, I was told I would need an emergency organ transplant. Before they put me under, I close my eyes and imagine myself writing. Now all these years later, I can say, that was honestly what saved me. Well, I have a brand new liver. I'm Nora Logan, and this is a podcast on how looking at that helps you live. Today my guest is running Fagan. Rene is a sustainability thought leader, Illustrator, fashion designer and co founder of the Sustainable ecommerce platform sloka. She also lives with a mystery chronic illness for which she's yet to receive a diagnosis. As you'll hear in the episode, we're also friends which made this episode particularly fun to record. Today we talk about Ronnies illness, how grinding at a demanding job contributed to burning out in 2018. And what it's like to navigate the medical system when you don't have a diagnosis. And I myself had a mystery illness that resulted in liver failure. I wanted to have a conversation about what it's like to live with a mystery condition and the gray area and grief that exists within that. Thanks for being here. Here's the conversation. Welcome to sell life. Once you died, Rene, thank you for being here today. Thank you for having me. So you've been dealing with a mysterious autoimmune condition since 2017. Can you tell me a bit about how you first got sick? Yeah, 2017 It was the summer. And it just started like really small. I kind of like woke up one morning before work and had what looked like like a botched filler job on my lips on the top lip. And that was the first time I kind of had any sort of inflammation on my body. And it obviously felt really foreign. But it wasn't concerning. And it kind of went down. After a few hours. That was the very first instance that it had it and it kind of just assumed that maybe I'd been bitten by a mosquito in the night or something. But slowly after that month, this kind of started to happen more regularly. And that's when I realized there was something going on in my body. I have a lot of identification with that because actually one of my first symptoms was inflamed. Eyes. Like I thought something had bitten me as well. And I just thought it was a spider and got kind of further do you get a spider bite on your eye? Yeah, yeah. And then my face was inflamed as well. Because I was in Bali, where I got sick. I just thought okay, spider by and then when I was vomiting, I just thought, okay, spoke about Belly belly, you know, and it continued to be a mystery. Can you tell me a bit more about other presenting symptoms? I mean, it's really similar. I guess that speaks to how we are conditioned to like paying attention to our bodies and kind of rationalizing things away. Yeah, so that was the June 2017. And then I went away in the October to Morocco with a friend and we had gotten a bus from Shasha and fez fares. And in that time, I got really sick. I basically just caught a cold someone on the bus had a really bad cold, I got the cold, and obviously had a terrible time and fares too hot. And I was in bed and I woke up again with my lip Lake. But this time, much, much bigger. And it was always only the top plate that was really strange. And I just figured again, I've got a cold, I just had a really long journey like I've been traveling, I'm in different country, it's just my body is just really tired. And then after that month, it was happening more frequently. But it shifted from inflammation in hives on my face, like on my lips to my arms and like the backs of my legs and it became a time where I would then start to wake up every single day with like the entirety of the backs of my legs and my thighs just like covered in these really hot, like incredibly swollen hives, and it felt kind of like an insatiable itch and pain that I couldn't really describe the progression from that one that one time in June then once again October it rapidly shifted to this kind of uncontrollable thing where I didn't know if it was something that I was eating, whether it was like a laundry detergent or a fabric or I had developed knew allergy to something it looked like. It looked like anaphylaxis on my face to the point where if I did get a flap on my face, it just felt very concerning because you only ever see that type of swelling on someone who's about to like, have their airways closed, and, you know, go into shock. Thankfully, this never happened. But it took a while. And I had to start trying to see it up to get a diagnosis, which proved to be very difficult. And you're still looking for a diagnosis now, right? Yeah, I'm still looking for a diagnosis from a doctor that will kind of take time to really pay attention to go through the timeline, the symptoms, and the things that are happening, you know, like in your life that correlate to what goes on in your body, it just hasn't happened. So I've kind of self diagnosed and multiple. Can you take us back? Pre 2017? What did your life look like? And what sort of led you to? I don't want to say being sick. But what were you doing for work? What did your life look like? Well, I guess what led me to being sick, that's pretty accurate way of framing it, but chaotic. To be honest, I graduated in 2015, I did a fashion textile design degree, I think anyone has done that. You know how hard it is? That final year especially is I don't know if anyone could have prepared me for the amount of work and the lack of sleep that you'd need to endure, to survive that and to do well, and to feel proud of yourself. Between 2015 in 2017, I was working in luxury fashion. And I would say on and off. Because again, if you know the industry, well, it's really difficult to hold down a job, if you are looking for a pay that will actually sustain your life in a way where you can buy food and pay rent and live in London. And a lot of the roles that I had been given were terminated like after three months, once they hit that point where they had to start paying you a certain amount, and suddenly the budget disappeared. So a lot of up and down with the work. And that was quite stressful after just finishing the structural degree. And then going into the working world. Having basically prepared myself for that since I was maybe 11 years old, to having to find other ways to make money on the side of doing the thing and not giving up on that, quote unquote dream of the industry that I went to working as a designer, textile especially. And then. So with all the other jobs on the side, I decided that this video wasn't sustainable. And I would need to figure out a different way of living. And it was kind of a period of grief grieving this idea of what my life would look like grieving. All of the work that I'd put in. I mean, I started interning at 14, knowing that I would need that in my back pocket by the time I got to uni and I would need to build on that by the time I graduated to get those roles. And it kind of felt like all of that was for nothing. So there's a lot of grief. And I had been practice. I started practicing yoga into that team just before I finished or started my final year and got really deep into it when I graduated when you know you don't have anything else to do because you're looking for a job. And so I decided to go to Costa Rica for a couple months to train to be a yoga teacher. And so there was this big transition between fast pace intense every day crazy hours no sleep. Hi social life in fashion industry to Costa Rica living in the jungle training under a very different lens of how to live your life, how to have a different perspective, really ancient wisdom and it allowed me to gain a lot of peace, I guess back and I started to notice a lot more of different things that I wanted in a different way that I wanted to engage in the industry and it kind of it was kind of like a recalibration. But before I before I'd got to Costa Rica, I was working in a cafe to make money and save it. Every single penny went towards that trip. And I was working, I guess I don't know like Monday to Friday, and there was person that came in every single day. And then on the last day before my shifts ended for us about to leave. She came and gave me her business card. I was like we're hiring for this new place. Let me know if you're interested And, and I kinda wasn't thinking anything of it, I figured I might just stay in Costa Rica. I emailed and had an interview. And as for a new hotel opening in London, and I was like, Oh, this is kind of cool, this might be a different way of focusing, refocusing my life, let's just see how it goes. I had the interview, the day before I flew to Costa Rica was out there, January to March. And on my third week of being out there, I got the email saying that I got the job. So it became this thing of like, do I stay in this state where I've realized that there's a lot more that I can gain from this way of living from being deep in the practices of this ancient wisdom? Or do I come back to London, and take this job in hospitality? That is similar to fashion, but you know, it might be it might be a bit different. And obviously, scarcity mindset, I was like, No, you need to be smart, make sensible decision. So I came back and took the job. And it was just chaos. To be honest, hotel openings are not for the faint hearted. It's not something that I would say, that would recommend to especially after a restful, yeah, yoga, teacher training and contrast was something that I could not have prepared myself for ever. You know, to this day, I've made some of the best friends I've ever made in my life. I've learned so much from that, from that role I, it was meant to be at the time, but it was three months after that job that I started to get the symptoms of the flare ups and with the information that I have now, and especially the information that I had gained from being in Costa Rica, but didn't sink in until I guess a few years later, is that that kind of dramatic shift can dramatically change the way that your body responds to stress, the way that your health is, and I think that's definitely what was the catalyst for this phantom illness. You're working in fashion. And then you go into hospitality, both of which have a reputation for really grinding. I wish I knew that before I went into the house was me too. I wasn't in hospitality, but I was in in fashion. And we have similar stories in that regard of just grinding, but also the working for free aspect of it. And the rude awakening that oh, I'm going to work at this one designer, high end designer for five months, hoping that it'll turn into something. But that's a whole nother podcast, it literally never does and never does. It never does. And you have this dream, and it's just crashed in front of you. But even with that, that you still working towards something, you're still dreaming about something and you shift direction. And I think for a lot of millennials, there's this concept of working themselves to the bone, working a full time job and then having side hustles Yeah, you know, I've spoken about on other episodes, how they used to be referred to as hobbies. Yeah. They rapidly changed from that. Out of necessity, but also this obsession with working. Yeah. Did you feel the pressure of that then? And do how do you deal with it now, when you're sort of awareness has so radically shifted? Clearly? I mean, I think it's a constant check in with myself. And being realistic about why I feel that way away think that way, or why I'm addressing these skills in that way. Why do I keep trying to monetize everything that I can do? And how do I keep things joyful? And how do I keep things restful? And I definitely, definitely resonate with that. Even at the time when I was when I thought, these internships are these placements where, you know, you're praying, this is gonna lead to like a salary job. You're kind of always thinking on the backburner. What's the fallback? What else can I do? What else can I show? Like? How do I like carve out a space for myself? Because this isn't going to be enough. You know, it's, it's kind of always been there. And I think now, when I look at the trajectory of my career, and all the things that I can do, and the things that I make time for, I try not to put pressure on myself, in the sense of, oh, I should be at this stage by now or I should have done this or these are the people that I should be in the same room as because it's not linear. And I think for me to be in those places of the shirts, I probably would be much sicker. I would have had to put In a lot more hours, I sacrificed a lot more of my health in order to get there. And so it's just constant perspective, constantly running the timeline of why I am where I am today. And that's absolutely fine. And I'm very grateful because I am healthy, like, somewhat healthy, and I'm alive. And I'm able to really advocate for myself, that goes above any sort of success barometer that you might find on social media. And in terms of finding a diagnosis and what your flare ups look like now that you shifted out of working in hospitality, yeah, what does it look like on a day to day basis, it's really sporadic, I still don't have a grasp on how to, I don't know what to say manage, I don't really have a grasp on when to expect a flower. And that is really frustrating. It's less common at certain stages. So we went into lockdown, obviously, every day flare up, but six months prior to that they'd really subdued and it really calmed down I'd been seeing a friend of mine was a nutritionist that God and she offered her services for me to help me figure out if it was a food thing. And that kind of helped manage it somewhat. But they would still pop up every now and then there was no way to really pinpoint what the causes were. So yeah, today, it's still very much one week, it's fine. And other week, it's not, it might completely wipe my energy. And I can't do anything. During and from some days afterwards, it if it's cold season, and I'm doing what I can to boost my immune system, but there is that kind of like suppressing energy around, I could get one flare up a month or four. And I still don't really know how to how to deal with that, does it present in the same way as it did in 2017? Or has it shifted, it's at points can be more aggressive, to the point of waking up my eyes as well, and I can't open them. My My cheeks are like red hot and kind of hard. And sometimes that can drift into the lips, which is where the kind of fear of what anaphylaxis looks like comes in. And I would say that that's more aggressive in 2017. It was never like full face situation where I would need to be like in bed, just ice packs and trying all forms of anti inflammatory remedies. And then sometimes it is just in isolated areas where if I can just leave them alone, like my legs or the backs of my arms, then I know that it will go away. But like I said, The frustrating thing about it is that it's sporadic. And there's no pattern to how and when it's going to show up. And there's no one remedy or one like okay, I know if I do this, it's gonna go away, and it's gonna take this many hours. And I just need to do this because every single time it's different. Part of the reason I really wanted to speak to you is because I had a mystery diagnosis. And of course, it was very dramatic. It happened very quickly. I my body shut down. But in the process of consulting doctors about what was happening in my body, I had a lot of bad advice. I went to one doctor and they were like, you have a stomach bug. Here's some antacids. Literally, if I had just taken the antacids for 10 days, I would not be here right now I would be dead. Yeah, of course, there's varying grades, I guess, of how dramatic conditions can present. But sometimes, in dealing with the medical industry, it can be really frustrating in terms of finding a diagnosis and berating it that that that's more accurate. For myself, I never received a diagnosis. And I've had to sort of do a lot of internal work and a lot of therapy around that frustration or the grief really, that I feel around not having that diagnosis. But at this stage sort of bothers other people more than it bothers me. They really want to know like, how they can not get it. Yeah, it's so common. It's not a lurgi know exactly. It's not cat liver failure isn't. So what I'm curious to know, from your side is, how has it been dealing with medical professionals? I know you mentioned that you have a nutritionist that you work with, but specifically in medical professionals, how has it been trying to find the diagnosis and working with them? Medical misogyny is real. Yeah, it's rife. It's everywhere. It's been I'm really, really working on it. perplexing, to be honest with you, I think throughout the stress of it, and the kind of being bewildered by responses that I've received, somehow, I've managed to meet a lot of people who've experienced similar dismissal, like dismissive energy and behavior from doctors who've had given me some really good advice. And so one of I went to my local GP, and I've been keeping like a photo diary of the flare up just because obviously, it's really difficult to get an appointment at GPU. So there's no guarantee that when I go, I'm going to be experiencing a flare up, therefore, I can't show them exactly what's going on. So I've kept a photo journal about for a really long time. And I went to see my local GP and had blood work done as per my nutritionist and presented the results to him and was just like, look, there, there are no allergy markers. This is you know, this is what's going on. I really need some further insight here. These are the photos most people this is his photos glass, because it's pretty fucking shocking. And he was like, Well, I'm looking at your file, and from 2013, you have bloodwork done, and you have a really high grass allergy. And I was like, Yeah, I've had a fever. I've had hay fever since I was a kid, like, that's been the same throughout my life. And he was like, Yeah, well, I just think that if you just take an anti histamine, this will just stop, sometimes you can just open the window. And that will be enough of influx of pollen that could send you into a flare up. So try not to do that. I was like, right, so stay inside, keep the windows closed. Take one and two histamine. And that's it. And he was like, yeah, there's not much else we can do here. What would we just want to this is called an idiopathic urticaria. And I, having been living with this for quite a while, already knew what idiopathic meant, purely because I hadn't had any help. So what you have to do is research yourself, because you know, and so I was like, doesn't that just mean, you don't know what causes it? So if you're saying that it's grass, wouldn't you be able to tell me ways that I could manage or prevent this from happening? And he just lost it? He got so angry. He was like, I can't go try and tell me what, what I like you're trying to put words in my mouth? And I was like, No, I'm trying to get clarification on what you're saying. I'm here. For assistance. I don't expect an immediate diagnosis. I understand that this might take time. But you've just kind of contradicted the situation. And then he started to ask me what my job was. And how old am I? And did I grew up in the area? And it very much became this kind of like, how do I put her in a position or a place that makes sense in my mind to figure out my superiority to her. And that's not the first time that's happened. It wasn't the last time it happened. I went see another doctor. He was just like, Well, are you taking antihistamines? And I was like, Yeah, take anti histamine, when it happens, doesn't really do anything. I also have been taking them for quite a while in my life. As I mentioned before, I have hay fever. You know, and he was like, Well, how many you taking on so I'm taking one as per the box. He literally laughed and was like, oh, that's stupid. He said that stupid, that stupid. And I was like, why is that? Well, you need to be taking at least for every day. And I don't know if anyone else takes antihistamines, but they make you really fucking drowsy. And they longtime use of antihistamines is linked to some really, really gnarly diseases. That's not a long term solution. And that's not the way that I expect to be spoken to by anyone, generally, especially not someone who I'm going to for help. And so I learned from an amazing, amazing person maths Lord, who's just, you know, incredible, that our all of our medical information is our own, not something that I didn't know before. And so you are allowed to record your doctor's appointments because that information is yours. You're not recording anything about a different patient or that doctor that is yours. And so I just started to record every single consultation that I had, because I think when people engage with you like that, you're so taken aback and you kind of get you forget the question that you wanted to go in with you forget the timeline of your things that have happened or the symptoms that you've had and you don't really get as much out of it, especially in the short amount of time that you have That was really quite a momentous like learning for me. And then since then, if I could, I would Book Two GP appointments a couple of weeks apart, because I would have the foresight that I might get flustered and forget in that first one recorded, and then be able to go back in another time and have better questions and be better prepared to get the tests that I need to at least try and be further along along in this diagnosis. So those are my tips and tricks. Well, it's so important to know, because I think a lot of people don't feel like their medical information is their own, I think it's, I know, it's really difficult to even access your records in a way that feels accessible and ease for both in the US and the UK, even though you're allowed to do it. as yours, it's just an opaque process. It also I what I what I feel like I witnessed in that meeting with that doctor with that gap was that he felt attacked by my knowledge. Whereas it should be like you're coordinating communication with your patient, to help them be more informed. And it should be a collaboration, you know, it's not, I'm a doctor, I know more than you just sit there and listen to me. And it felt very much like I wasn't allowed to have any insight on what was going on in my body in any sort of symptom that I was presenting to him and explaining in great detail, you know, I spent a lot of time be like, let me go in with my journal, let me go in and explain timeline so that he's not like in the dark. And it just felt like that was the wrong thing to do. And that really, really pissed him off and safe to say, I've not been back to that up. So yeah, I'm not surprised that it's difficult for us to obtain that information. And it's not common knowledge that for everyone to know that it belongs to them. Because this is the kind of response a lot of people receive not everybody, but a lot of people I know have received this sort of very hostile, aggressive upset from GPS when they're an informed patient. And it speaks to a lack of, like you say, collaboration between patient and doctor, and a lack of care really in training, because I think sometimes when you're a patient and you're seeking a diagnosis, there can feel like there's a lack of humanity in the room. And that it's very transactional. And unfortunately, it has become that, yeah, there's so little time given to how much you can even spend with your patient. Yeah, like you go in kind of like prepping for an interview, you're like, okay, like, I'm gonna give you as much information as I can, I'm gonna sell you on, like, the tragedy of this so that you don't take me seriously. And it's kind of him. In terms of misogyny, it's rife, clearly, and you and I have talked at length outside of this context about racism within the medical establishment, How has being a black woman changed or informed your approach to your own care? I think I really weigh up, whether it's worth going in. To be honest, sometimes the the after effects of being in a room, a small room with somebody, kind of devaluing yourself symptoms and your lived experience, can be cannot, like be worth it. Sometimes it's, it's better for my health, mentally, and physically, to stay at home, and just do the gentle thing, the softer things. The story I told you before, around, you know, that doctor immediately going to what's your job? What do you know, what do you do? Where do you live? Are you from this area? I'm from Hackney. And that's where I was. And for me, that was a microaggression. Because it's irrelevant to the topic at hand. And it's come up as a kind of, I don't know how to explain it came up as a kind of defense mechanism to try and really put us in our lanes rather than being in that collaborative way. And I don't want to be in that position regularly. So I feel like the choice to weigh up whether or not I even go in for an appointment is the way that I can take care of myself as a black woman facing an idiopathic illness. I, again, try and really equip myself with as much information I try to leave In my community of friends, who also have had instances with diagnosis that aren't correct or lack of care when it comes to the medical industry, when I share things like that with my friends, I have a very diverse group of incredible girlfriends in my life. Hearing the different responses is also helpful for me as a black woman to understand if I'm overreacting, or if this is genuine. And some of my white girlfriends who have had similar other medical issues that I've had in terms of wound care, system ovaries, and things like that have had, or thyroid issues have literally been like, fast tracked into bloodwork and tests, to the point where, you know, they're trying to just make sure they understand what they don't their diagnosis is, I've had exactly the same markers shut up and my blood work. And it's been very much, we'll just wait and see what happens. So being able to understand that it's not just through my lens, this is happening, and hearing other people who I love and care about and they love and care about me, has really helped me gain a better perspective on it. Having a nutritionist, I do now have a nutritionist, that is incredible. She's amazing. I can't always afford to see her. But she has my file. And what that means is I have someone in my corner who if something comes up that she's like, this needs to be taken care of the space be checked, she will write a letter to my GP, for me preparing them for me coming into, they have all the information. And I feel like that's like having someone in your corner. It's like having a security guard or a bodyguard being like, this person isn't just coming in to annoy you, this person isn't just coming in to like, oh, no, you are going to assume that there are hypochondriac I am writing this letter, or I am equipping them with this information to ask for the right things because of these things. And you need to take that seriously. And I feel like for me that feels like being held by a professional that I haven't experienced before. So I feel like those are the ways that yeah, those are the ways that I can kind of take care of myself outside of the things that are completely in my control, like resting in early night and putting my phone on airplane mode before I go to bed, and as difficult as it is trying to manage my stress levels that is a constant work in progress. Like it's It's little things like that, that those are things that I can control. Whereas the other things it's like how do I call in community to really assist in this journey, and having people to advocate for you when you don't necessarily have the energy to do it for yourself? Nor should you have to. And I think it's so empowering, lonely, realize that we can have other people we can outsource the advocacy that because it can feel really lonely going in trying to figure something out as a patient. It can and daunting, because like, what am I doing? Like, even on my about to say and you don't know what tests to ask for? Gosh, it's yeah, the advocacy is, is truly like being held. It's like someone literally being in there holding your hand, I would like print off her emails and be like she said, I should ask for this, this. And this should always be available for a call afterwards. And I feel very grateful to have access to that at any point, whether it was like one consultation or four. Like I said, it's not always available to me, but it is completely shifted my ability to go in with confidence. So I want to shift and talk a little bit about grief. You mentioned that earlier. We deal in grief here. And the grief of having your body change sometimes overnight. And also having to say goodbye to parts of yourself through having an illness or a disability and through living with chronic illness. Have you felt the weight of that grief and having your body kind of shift over time and overnight? I mean, yeah. And also the lack of diagnosis. Yeah, because you feel a bit crazy. Would you agree? Like you feel a bit like, Am I making this up? The grief of my body shifting has been and continues to be again, the journey. The inflammation like feeling inflamed all the time completely changes the way you're able to move through the world. We were able to get dressed the way that things fit you and not in a vain way. And this is uncomfortable, like this is so uncomfortable. And so I grieve the ease of getting a massage and not knowing if I'm going to come up in hives, but not knowing why. And just simple things going away on holidays, and there's a high chance that I could have a flare up, and there's nothing I can do to prevent it. Yeah, because we don't know what it is or how it comes about. And so it's kind of always in the back of my mind to monitor my energy expenditure and not beat myself up about it if it does happen. But at the end of the day, obviously, it's really, really sad when you have to take a bad day. And so I think it's this pre emptive grief as well. Of like, am I going to miss this thing? Am I going to not be able to do that? Am I am I not going to want to go outside because my face is swollen and I can't open my eyes. You know, am I the vanity side is are people gonna think I've had botched fillers? Like it's just happened? I once like it was working. And a friend. A friend was like, I was like, Oh my God. No, that's not like that's that's a bad thing. It's more like, I'm in pain. And this is my body doing some really crazy shit. Wild, I did not pay for it. Absolutely. You know, like, I would love for it to go down, like ASAP. And so there's a kind of like, a guard that you put up as well. I could defense mechanisms. So yeah, there's a grieve my body being in peace and regulate it. And this type of recurring inflammation is recurring trauma to your self body. Yeah, absolutely. And also, I love that term, pre emptive grief, I hadn't ever considered it in that way. And I have a similar thing where I sort of have to manage myself in a way that sometimes feels very constricted, because of the potentiality. of not feeling well. Yeah. And there's always something at the back of my mind. It's like, oh, if I do too much, will I make myself sick? And constantly, constantly worried about that? And it's, there's no, for me, at least there's it's a very gray area. And there's no right way to do it. Because you still have to be out in the world. Or at least you don't have to, but I want I want to be out in the world to be honest with you exactly. But it can feel really confronting to have to make decisions around it. Because we don't live in a world that really caters to things like this, especially if it's invisible. It's not until ever flat when someone's like, oh, shit, this isn't what you mean, this is what you're talking about. And I'm sure it feels the same for you. It's like, if it's invisible, you have people who are gently sympathetic, but kind of a bit aioli. And then you do push yourself a bit too far. And it's like, oh, oh, okay, this is the thing that you've been concerned about this whole time, it's made you maybe a little bit less fun than other people at times, right? And there's not always that care just is not built into our society because we live in an ableist society. So it's something we just have to self manage. At this stage. Hopefully, we're building something new, eventually, maybe not. As an illustrator, and a fashion designer and a creative, yes. How do you use your art to unwind and de stress? And how have you used as an expressive way to channel your frustration about what you've gone through health wise, I've always kind of enjoyed creating things that maybe don't exist yet. Or depicting things that aren't necessarily the visible reality. And that kind of just means gibberish and a mix of things. And so with my art, I just like to create whatever comes to mind, like when I was in the state of trying to find a job that would pay me a decent amount when I graduated, I found myself drawing every day. And I was like, I wonder what it'd be like if there were fruits as planets and space, like things like that. And as a visual piece that's really gorgeous. And I really enjoyed that combination of worlds. And so that's kind of how my art evolves. And I feel can be transferred into multiple places like, you know, that could be someone wanting that to visually witness a wall in their home or something that someone might want to wear as textiles on their body. Because it's just fun. It's not serious, in terms of like using my art, to channel my experience to this illness. I don't think I have as much done that but what I found Just recently, I found a way to merge my experience in the industry in fashion, revisit what it is I truly love about that work and what I love about that industry and clothing. And you know the beauty of that, and merging them together. And my work is now in June to be to advocate for, you know, a fairer fashion future. One of the things that I learned the most when I was working in luxury, or those years ago was how crazy wasteful and, again, harmful it is, obviously lived experience there. And so depicting imagery that really helps people visualize what goes on behind the scenes in the industry really felt like, like a calling that I wasn't awake to perform. And I was able to work with some really amazing like organizations to help produce campaigns to really promote the amazing work that they're doing, supporting mostly women who are just forgotten about in the fashion industry. And I feel like, because my gut is telling me that one of the main reasons I have this mystery illness is because of stress. And that industry was one of the first to cause me stress that feels like a way of really channeling my experience and my art into a way of highlighting what other people are going through within it. And hopefully shifting that and ending that and hoping that more people will start to learn and advocate for those people too. And I think the art aspect is a really powerful tool, the illustration aspects specifically, is a really powerful tool, because you don't have to read a whole a4 page of information, you can just feel into the art. So in terms of healing, you touched on it a bit. But for you right now, from where you've been and your search for diagnosis to what you want it to look like, eventually, what does healing look like for you? And looks like lots of rest for lots of people. Mandatory, like non negotiable. I did a an immersion training with a really amazing teacher that you will also know Yeah. And rest was module, like a module in the training. It wasn't negotiable. It was mandatory. And I found it really hard because we don't live in a world where that's encouraged. But it fucking changed the way that I went about my days. It completely shifted everything. And so I think if we could Yeah, I feel like a world where rust is encouraged. And a topic that's always discussed, questioned, you know, you have you arrested today, have you rested this week, because that's how we maintain ourselves and our bodies and our health. And without it, we are all just running towards cycles of burnout. You know, and we should be trying to avoid that. Absolutely. You know, rats, more rest, more art more play. So you may have the same answer for this one. But if you lived in a world that completely catered to your mystery on this, what would that look like? To be honest, yeah, vast, but also, it would be more expensive care. Like there aren't many even like ointments or products that are cooling for the body when you have inflammation. And I feel like a lot of people have inflammation. Yeah, like more of an investment in what it means to expand what care looks like whether that would be more herbalism what herbs local to you, that you can ingest that are incredibly good at reducing inflammation. Have those in your home, you know about them? Are they in ointments? Are they in creams? Like what does that mean? How do we have a full like a sock killer version of like treatment? That's not just okay, shit is laid out now. And that's all I can do. So yeah, rest and then just like a plethora of like herbal remedies that were really, that really do just shift things from the inside out. That would really cater to a lot of people who have inflammation and I don't know why. I mean, for me living in a world where something like the NHS collaborates with people who work with herbs that would be a Utah have beer. That's exactly what my brain was trying to say. Yeah, exactly the NHS. I have massive respect for the NHS and I was in the US when I got sick. But for those doctors who helped me, but there's, there's so much that falls short in terms of care, like you say, absolutely. I completely agree with that. I love the NHS tiller, mazing. And there's so, so many other things that I've, you know, been able and blessed to be able to lean on them for this is not a representative of it as a whole. But there is definitely a gap when it comes to things that are difficult to pinpoint to one thing and there isn't enough support at all. So So what's one thing that you do each day to keep yourself creative? Truly, I dance every day, inspired by my friend Nora. But yeah, it really helps. I find whenever I've done any sort of movement practice or meditation practice, that's when my ideas flow. If I have fallen off that wagon, and I lose ideas I know exactly how to get them back. So yeah, dancing lots of Robin Florence in the machine. Love it. If k dot. What's amazing is that you're not the only person who said like medicine. Yeah, it's definitely medicine. We love dancing. And then finally, what's one phrase or saying that you always come back to but who probably like fuck, Bishop. Love it. Fuck this shit. I wish it that's a good life motto. I'm into it. Maybe that'll be the tagline for the show. Yeah, but Well, thank you so much for being here on a how can people engage with your work? Where can they find you? Instagram? It's Renee s. Fagan. That's my handle. There'll be a lot of plants and my artwork, some probably some yelling her fashion CEOs. Mostly that actually. But yeah, it's at Renee s. Fagan. Thank you for being here today. Thanks. So grateful to have you. Pleasure. That was our show. So life once you Dad, thanks so much for being here. This episode was made in collaboration with and support from Soho House. Many thanks to Jamila Brown, Minh Shrimpton Olivia Garrity Seagal, Muhammad, Erica Benet Antonio Vander Broca. Our illustrations are by our guest today, Rene Fagan. And if you like us if you liked the show, please subscribe. Leave us a review or rate us on Apple podcast Spotify, or wherever you get your podcasts. If you love us, or even just like us a little rating us and subscribing makes a big difference. You can find us on Instagram at So life once you Dad where we talk about everything that's happening here in real time. Thanks so much and see you next time.