 Hello and welcome to Pukipondas, the podcast where I explore big questions with brilliant people. Today's question is, when it comes to disability and chronic illness, is peer support risky? And I'm in conversation with Amy Dickinson. I guess a chronic illness advocate, although that's not an official title, and work on entirely patient-led or person-led, I guess we're not always defining ourselves as patients' communities to support each other through illness. Wow, that sounds big. Okay, so we've got lots to talk about. So our question today, the question for the episode title is, when it comes to disability and chronic illness, is peer support risky? So I'm just going to throw that massive question at you. And if you just jump off and we will get going. Yeah, I guess I'm going straight into the heavy stuff, aren't I? Yeah, let's just do it. Yeah, so I guess this is a question that I've been kind of learning on myself over the last year or so. I worked in a lived experience role, which is what it's often referred to in companies and business, where I was a tutor teaching mental health courses. And my role was to be the lived experience tutor in the room. So sharing my experiences to try and help other people to learn. And I enjoyed that. I enjoyed the face-to-face time with people. But over the time that I did that, and I was working for the NHS at the time, I came across other people, actually, other organisations that were saying, hang on a minute, are you really being allowed to share your experience? Are you really as free in this as you think that you are? And the organisation that I was actually pointed to by my bosses was an organisation called Recovery in the Bin, which is a group of service users who produce service user-led research. And around the idea of recovery or the medical idea of recovery in mental health. Is it something we can actually achieve? Is it fair for all patients? Does it look like the version of recovery that you're being presented by people in front of you? Or is it a bar to judge people by and whether they're trying enough to get better? So I then started questioning my own work bit. And eventually, because of coronavirus actually and reduced workload, I left my job in the NHS. And I started up my own community, which is a community called Do It Ourselves, which runs through the streaming platform Twitch, with no more purpose to it than let's just have a space where we can all get together and chat about things that we might not be able to chat about in real life. And unlike my previous work, it's not entirely mental health related. It's any chronic illness, disability, or you don't even have to have a diagnosis. If you feel that there is something health related that's getting in the way of you being able to do what you want to do and you feel like what we talk about is relevant to you, you can come along. And because it's so much looser, I was really nervous when I started it about whether I was safeguarding everybody properly. I'd come from the NHS system where it's like, don't talk about this topic unless you have a professional in the room. These diagnoses are out of bounds unless you have a clinical psychologist there. We need to know the names and contact details of everybody in case something goes wrong. And to a certain extent, some really maybe unspoken stigma ideas like if you let a load of patients get together, they'll learn unhelpful behaviors off each other. And the more I've actually run this community, the more I've realized that that is all stigma. And actually we can take, you know, we're all taking personal responsibility for ourselves in this community but we can also be kind and nice and support each other and create a lovely culture and environment. That means that we're just there to support each other. We're not trying to meet any clinical aims that a service has. We're not trying to make it look good. We're not trying to meet someone else's definition of what our recovery should look like. We're not even necessarily trying to recover. We're just talking to each other and validating each other and learning from each other. So that in a very messy nutshell is kind of where the question came from. Wow. Okay. There's a lot to unpick there. Yeah. I have like a million questions, but I'm just going to try and work out what is the best one to start with. So first of all, I guess it would be interesting to understand a little bit more about maybe when you set this up versus where you are now. Are you happy with how it's going and has there been anything surprising so far? Yeah, I don't think I realized any of these were issues when I set it up. My partner runs a podcast. He has a podcast. And when coronavirus hit, he started streaming on Twitch with his brother who does the podcast with playing games. And I would sometimes sit there and very openly talk about the issues I was facing while I was sitting there about, you know, I feel really faint because of my pot or my legs really hurt. And people in the chat would be like, yeah, me too. I'm so glad someone's talking about that. You never see someone talk about that. So they really it was it was that community encouraged me to set something up. So I wasn't really thinking about what it was going to be. And I set it up with one stream on a Monday, we pick a topic and we all talk about it. And we're very much with the idea in mind that I'm one person's experience and I have people there are people from all over the world, lots of different intersectionalities. Like, I'm not going to be able to speak to everybody's experience if someone might come up with something. If we're talking about medication. And, you know, there's someone in the US who's dealing with a completely different health system, or there's someone from the black community who has a lot more stigma around them around pain medication being prescribed. And I can't speak to that experience. So I host, but it's kind of for everyone to talk. And so as it's grown, all of the ideas, all of the developments have come from people saying, it'd be really great if we could do this. And people volunteering for things as well. Someone set up a forum and that was completely their idea. Someone else will do transcripts for me so that all of the content is accessible. Like people just come to me someone's designed merchandise for it. So this is really just become community run without us even trying. The team just grows of people who are doing things. So I guess I didn't know what it was going to become when I started, because I didn't know the people that were going to be involved. So what I'm learning to do, which is difficult for me is relinquish control, and, and let different people take over little bits and let it organically turn into whatever it's going to turn into. Which can be really scary. I have been quite scared about the forum being set up because I want to safeguard people. And I have my NHS background. So we've done a safeguarding policy for the mods so that they know, you know what posts to allow what not to allow how to look after themselves. But after that, I've really just got to let it go and trust people to kind of self regulate each other and themselves and ensure that it's a helpful thing and not an unhelpful thing. Which is scary because we're not we're not we're told not to do that a lot. And has there been because it sounds wonderful and kind and caring and nurturing and supportive and collaborative and many other words. But have there been any problems along the way. Not that I know of. And that's the thing because it's. I don't know who people what people's actual names are sometimes people can use a username on Twitch. I don't see a picture of them. You know they can give me whatever information they want but they could be telling me they're from one country and they're from another. As far as I know, there's not been anything no one has contacted me and said, you know, this inappropriate thing happened through this channel you're providing. We have moderators who make sure no messages are put in the chat and we've had a couple of bots come in that have needed deleting that have come in with the occasional inappropriate comment. And we do a little introduction at the start about kind of what we're there for content warning, you know, we can't get to anything makes everything make sure you dip out if the topic is uncomfortable for you. But overwhelmingly the feedback seems to have been positive and because of the nature of the platform because it is on a streaming service people have personal responsibility for themselves so they're more than welcome to come to me and say, this person has behaved inappropriately, and then we can deal with that but if they don't they don't. So to a certain extent I have to relinquish that control which is is difficult. And I have been quite careful about not overly advertising it so that it's grown quite organically so that as new people come in it's a few people at the time and they can learn the ethos of the people who are already there. So, and how about in terms of you, I mean I'm not sure what your kind of labels are you mentioned pots but it sounds like quite a lot of, you know, responsibility and pressure to be holding that even though you're talking about a bit more distributed kind of ownership and leadership of that I mean does it are there any risks to you do you think kind of leading it. Yeah, I mean, I have it's made me think a couple of times. I with streaming in general because sometimes I go on my partner streams I go through periods of this is great like we're in the middle of a lockdown and I have all these brilliant people on the internet who I can talk to and it feels like I've just had a group of friends around my house, even though I haven't. And then there's times where I'm like actually you know a lot about my life, I've been really open and I feel a bit vulnerable from it all. And I naturally go through that cycle. But one thing it has taught me to do is look after myself so every time that I've had to cancel a stream because I've not been well enough. All I've received our responses saying that's right the right thing to do look after yourself. Thank you for role modeling this and taking time out when you need it. And so it's just a overwhelmingly supportive group of people and actually we're getting to the point now where other people will be running streams it won't just be me. I think the difficulty for me is going to be what size does it get to before it needs some kind of structure. Yeah, behind it to make sure that I'm not having to do everything for it dependent on how much money I make from it because it's all donations based. People can access it for free and people donate money to me and at the minute I'm getting enough to run what we're running. But if it becomes this big like administration of streams and forums and merchandise then you end up like you say man in holding a lot of things and feeling a lot of personal responsibility for making sure it runs right and the minute you do anything to do with chronic illness or disability obviously you're quite rightly open to judgment around whether what you're producing is accessible, which when you're not making money can be quite difficult things like captioning or having BSL interpreters. Because it needs funding and if you're doing it in a voluntary capacity, how do you balance it do you just not run it because it's not accessible to everybody. So there's loads of questions around it but I don't think I'll ever get to the point where I feel like I have to make all of those decisions on my own because if I'm ever struggling I just put it to the whole community and say, I have a lot of ideas and thoughts on this. You know, and I do turn them sometimes and say, this can't I've just not got the space at the minute this can't happen yet if you want to do it you can set up yourselves, but it can't come through me. So yeah it's a one big experiment. It's fascinating and I say I'm not as young and trendy to know very much about Twitch I know of it as a gaming platform I have a friend who's a games developer and I know he twitches. But I'm here going, I actually just can't envisage what does that look like is it like zoom or like, can you describe what a session looks like. There's other platforms that are quite similar so I know companies that use places like crowdcast, but it basically is is like I'm on screen, they can see me. And then I have a chat box next to me so like when you're on zoom and you have the chat open. But everybody responds through the chat so no one else has a video no one else can speak. I'm talking and then I'm replying to the messages that they write. So like if I run a Facebook live that kind of. Exactly so the messages stay on the on the on screen for a little while and then they they phase off and it's constantly running, which to some extent makes things a bit easier if people are venting and sharing difficult experiences it's only going to be on the screen for a minute or two so it's not there permanently. So I run that for about two hours it'll be me on screen talking backwards and forwards with the chat about whatever topic. And then we'll have a break a little break in the middle and you can put a hold screen on so it's still live but people can't see you. And then that video is available for people to watch for two weeks. For me I'm at twitch has different levels so I'm at what's called affiliate, which is like basically in the middle it means I can make money from my streaming I have enough people watching me that people can subscribe. But I'm not like super famous got thousands of people watching me which is what they call. What do they call it prime something like that. You don't choose they they yeah you have to meet certain criteria so you have to have a certain number of average viewers you have to stream a certain amount. Yeah. I can't remember what the other one is people chatting or engaging with you something like that. And then you apply once you've hit all of those criteria you apply to them and they and they decide whether you're you're there enough to have subscribers and things. So at my level the videos are available for two weeks. And what we're just starting to do now is one of the members very kindly thinking ahead which I did not do downloaded all of the videos as we were going along. And I'm going back through them now and we're making highlight videos of all the tips and ideas that come up while we're talking. So you'll have sort of like a 10 15 minute video on medication management or sleep or anxiety or whatever it is we're talking about and they'll go on YouTube. As some kind of reference point for people to go back to but when I put the videos up that will just be the video of me it won't have the chat. And I'm being very careful to only include clips of me talking about my opinions in case someone put something in chat thinking well this is temporary. And it will go and then I read it out and put it on YouTube and it's there forever so those highlight videos are just me speaking. Wow that's a lot to think about isn't it. Gosh, so do you have to do loads of preparation before each session or do you just kind of roll with it. I did when I started I very much went into it with a very similar mindset to my NHS work. And I wrote myself a little prompt document of I want to talk about this and this and this and I tried to keep the topic in line with what I wanted to talk about that lasted for two stream. And then I just decided on a topic and I would talk about kind of my experiences with it and then I would just interact with the chat and we'll go wherever we go we go completely off topic sometimes. And then I'll just try and steer it back around a little bit. But it's whatever people feel the need to talk about on the day a bit and me trying to work like I say other people's experiences in because otherwise I'm just giving one very specific viewpoint of what it's like to live with chronic illness. And we do a lot of sharing resources as well so I've got some brilliant mods Matty and Andrew, and they anything I mentioned they'll like look it up straight away so if I mentioned a particular product that I find helpful with for sleeping. Or like someone mentioned type of therapy or a model so they found it straight away and the link goes in the chat for people to follow it up so. Yeah, it. It. I constantly fight between my perfectionism of wanting it to be a certain thing and like me a person a certain standard, and then the reality of a community that's completely run by people with chronic illnesses that has to be flexible and has to fit to what we can do. Okay, so I'd love to be able to go back through all of those streams and pick out every single resource and make a big website with all these resources on. But I can't. And I'd love to have these have had these highlight videos out of six months of streaming, as I was going along. But that is also not happening until I get round to it and I have time to do it. That's hard and actually I think it is probably important that you keep it real and I don't know I find this every now and then I have to check in with myself and the story that I'm telling to the world around me because I think it's easy to fall into that masking mode isn't it and do everything's okay. And then I realize sometimes that does set unrealistic standards for everyone else because I know that I only kind of have the mask on for so long and then it's you know, like, a little bit different the rest of the time. But people only know what you show them don't they so yeah yeah I'm really lucky I mean I have a really good therapist I go to private therapy, and I've been with the same therapist for four years. She just has chronic illness as well so we are on the same page about a lot of things. So I've got that space of my own to reflect. And I do talk about the stream and what we're talking about and the community. So I've got a point to kind of kind of bounce off. One of the things that comes up in that quite a lot is sort of my own internalized ableism around wanting to be able to be independent and make money from what I do. And getting very frustrated when I have to cancel a stream or I can't do the thing that I want to do so that's kind of like an ongoing battle alongside running it. I think I've always been one of those people who likes to educate an advocate about the things that I find difficult in life, but also some of that is because I have a lot of internalized anger around what I feel like I should be able to do as well so it's a constant balance, but I feel like the last four years of therapy that I've done have made me very good at being self reflective so hopefully I'm pretty good at keeping up with that. And many people in the community are very protective of me and we'll say you look tired. Are you sure you want to do this stream tonight? Are you sure you wouldn't rather have a rest? So I've got lots of people looking out for me as well. That's really nice and I think that's, yeah, that's so important looking after yourself first before you're looking after the whole community. And I was wondering, you talked about, you know, you've got quite a few people now involved it seems, who've got a range of different chronic illnesses or disability. And I'm wondering how homogenous, is that the right word? How same are people who have chronic illness and disability? Very different. To be honest, the crowd that I have within my streams, because a lot of them come from the fandom of my partner's podcast, that's where I met them all because they were all following his streams and stuff. He does a sci-fi improv podcast, which is very, very new. I know it's extremely, it's called Stella Farmer. He'll kill me if I don't say the name of it. And the company that he does it for Rusty Quill are, try really hard to be really inclusive and respectful of different communities. And as such, I've got quite a large LBGTQ. That's hard to say with brain fog. LB, no, I've got, oh my gosh, I've got letter. Let's pause on that a moment while I let my dog in. I've got letter brain fog. I can't remember what order they're going. LBGTQ. LBGTQ, or LGBTQ plus. To be honest, the order you say it in, I guess shouldn't matter. That's just what we're used to saying. But we've got quite a big, a big following and quite a big trans community following as well. So there just happens to be quite a lot of people from that community within the chronic illness community that I've created. But apart from knowing that because I talk, we talk about it a lot in the chat. I mean, I haven't really got a way of knowing. I don't do any, you know, equal opportunities monitoring or anything. It's just whoever finds it. So I can kind of see what I can see what countries people come from. And I know that we did. We do a stream on a Thursday called chronic chillness, and it's just an hour. And it's for people to get health admin tasks done but have some company while they're doing it. So if you need to get like your med sorted or book an appointment or some people just use it as their I must rest and sit and listen to us while they rest for an hour. And we've just done two streams, language streams where people from different countries sent us phrases in their native language. And we tried really badly to pronounce things and say and learn how to speak some of the language and we got 11 different languages. So we've got people from a lot of different countries. And my mods are from Wales and Ireland. And I have, yeah, people from all over the place. So I know we've got in that sense, we're quite diverse. Other than that, I don't really know, I just know that I will read people's messages out on a topic as they come up. And sometimes I'll read them out and say, can't speak to that at all. Who in the chat, you know, if you are in the chat and you can get in touch with each other and people will often say, I found other people to talk to I found people who get my experience. So quite a lot of people at the minute who have moved home and are living with parents or haven't moved out and are living with parents. So that's a big issue that seems to be coming up a lot at the minute because of COVID or because of COVID and because of chronic illness, meaning that it's harder to move out or harder to get a job. And also because of COVID, it's harder to get a job. So that's an issue that comes up a lot. I guess I could, I might ask them actually coming off the back of this, whether they want me to do some kind of equal ops thing to see who's there or not, or whether they're just quite happy being anonymous. And I think we'll see now I'm giving community members the opportunity to host and run their own stream. Yes, we'll see what kind of issues come up that are completely different to things that I've experienced. I have, I do sometimes get guest hosts in that I know speak to a particular experience like I've never had any inpatient experience. So it's useful to get someone in with that. But and but now I think I'm comfortable enough with the technology that hopefully I can help other people to host it. So the, yeah, the sky is the limit. And going right back to the beginning, you talked about your past role at the NHS as a lived experience being part of the title there. And I kind of picked up something in the way that you said the phrase lived experience that maybe there is something to talk about here. Yeah, I mean, this is where I've got to be really careful what I say as well. Because I mean, honestly, I don't know what I'm allowed to say and not allowed to say about these kind of things in relation to specific employers. I had a difficult time, I think it's hard when you work for the NHS in general and I'm sure there aren't many people in the NHS who would disagree with me that because it's so under resourced and it's such a hard job. You put up with things that you wouldn't necessarily put up with anywhere else because of the nature of the service that you're doing and because you know that a lot of the time managers and people who are in decision making positions are not making easy decisions and easy compromises and they know a lot more than you do about why things need to be done. They know things at a strategic level. And I think with the service that I worked for, I put up with things or I didn't question things at the time that I should have because it was about keeping the service going. It was such a helpful service for such a lot of people that I didn't want to. It was kind of a means to an end was the reasoning given a lot of the time for a lot of problems, but I did notice and I don't think it's always a conscious issue that clinical staff often hold a lot of stigma themselves and it's because of lots of different reasons. Some of it is the way that they're taught some textbooks on this is particularly mental health that I worked in, but some textbooks psychology textbooks textbooks on mental health present disorders in ways that really are very old fashioned views and very stigmatizing. And a lot of people have worked in services where because that mental health services are so stretched now, the people they see are the people who are at their real rock bottom crisis low point. And so they've got a lot of fear around being able to support people in those situations that's that's their view of that illness is that illness at its worst, not, you know, the day to day lives of people who are not in that crisis point at that moment but still have that condition and still have difficulties from it. So there's a lot of issues there. And I found it very difficult sometimes listening to how some of my colleagues in management and in clinical positions spoke about some of my colleagues. Diagnoses and what they knew about them when they weren't in the room. That felt uncomfortable to me. And on some occasions, you know, you report it and then people are saying I am aware of this issue but it takes a long time to, you know, educate people out of certain viewpoints and it's a really difficult line. Clinicians are not as far as I know, there are very few places where clinicians are educated and how to work alongside someone who is in a lived experience role, lived experience people are taught how to work alongside clinicians but it doesn't happen the other way. And so I think sometimes they can end up treating you like a patient when you're not a patient trying to manage you, maybe ascribing behaviors to a diagnosis that they know about that they wouldn't otherwise. You know, if I was an administrator in that team and I had no reason to disclose that I had a condition, you would probably say oh well they're making that complaint because of an actual issue. Whereas if you know I've got a disorder that is known to be, or you believe to be makes me problematic, then you may ascribe it to that. So I think that was an issue that I would love to see more training of clinicians in how to work alongside lived experience workers and what it's like to work with a group of people who know all your deep dark secrets. You know I taught a suicide course, people who taught that course with me knew a lot about me that I would not normally disclose to people. So it's difficult when your colleague knows that information about you because they see you in a different way and all of their stigmas and biases and things that they've learned, they're seeing you through that lens. So there was also a separate issue around how peer or lived experience workers are contracted. So I was a bank worker, and I felt to a certain extent sometimes that the fact that I was a bank worker could be used to either give more work to people who were towing the line and less work to people who were problematic. So I had issues around the wage that we were given, the type of contract we were on, the power dynamic really. It was meant to be co-production, it was meant to be equal input between clinician and a lived experience worker. But when one of you is on a permanent contract and one of you is on a bank contract and one of you is paid at a higher level and one of you is paid at a lower level, there's a power dynamic there that just wasn't being taken into account. So I think whenever you're working in a service that uses peer workers, but it's funded by a different organisation, their goals and their aims are often going to trump the goals and aims of the peer workers or lived experience workers involved. There may be people out there who work in peer work and lived experience work who think completely differently to me and that's completely valid. This is just coming from my experience of it. But yeah, that was why I felt the need to step away from it. Good caveat there by the way Amy, I like it. I wonder what you think that clinicians need to know like if you were to run this course and it sounds like you could with your eyes shut for clinicians about how to successfully, sensitively, beautifully work alongside people with lived experience. What would you be teaching them? I think I could I could work a fair amount of it but you obviously you need all the different inputs of different experiences like I say I've never been an inpatient and that inpatient clinician experience is a completely different kettle of fish so that would definitely need to be brought into it. Yes. So I think it's about, to be honest, it's a really difficult conversation to have and the phrasing of it, the marketing of it almost would have to be very specific. I think it's, it comes down to a very similar issue to a lot of inclusion work and diversity work, which is, do you want to be seen to be doing something, or do you want to actually do it. And I think a lot of NHS staff might pat them on the, selves on the back for we have, you know, we have a lived experience person on this panel we have a lived experience person in this team. But are you actually doing the work to allow that person to express themselves and tell you the truth. Are you willing to hear that truth. I think this could speak to many different marginalized communities. Are you willing to actually hear that truth and work on it, or are you going to get defensive and feel like you're being called off which was the experience that I received I got a very defensive response when I brought up a lot of my issues. Oh, and that's my thing. I, it's about, and I don't know how I do it preparing clinicians to get honest feedback and honestly listen to what it's like to be a patient. At the minute I don't think people really already or want to hear it. Not a lot of people there will be the odd person that odd, you know, those stand out NHS workers out there who are happy to hear it. My therapist is great she's more than happy to hear it and reflect and apologize and, you know, be human alongside me being human. But a lot of people aren't ready for that conversation yeah I don't think. That's, that's difficult isn't it and I, yeah I have a real challenge when it comes to this kind of co-production and lived experience type work. One thing is that you kind of already alluded to it seems to always be like a really junior level where it's really poorly paid and it's like you couldn't possibly aspire to a proper job because you're ill. I don't know maybe that's just my sort of take on it but there's been definitely times in the past where those kinds of roles have come up and people have sent them through to me going, you'd be really awesome at this and I'm like, I'm literally not prepared to work for that kind of wage, no matter how great the job is like I probably rather do it for free it's insulting. Yeah, I was, I got told to be grateful a lot for the banding that we were at because people worked for free in similar roles in other organizations. But also yet there was no career pathway I'm actually doing a masters at the minute because I just couldn't get anywhere I'd get in an organization and I just hit the ceiling really quickly. And the only way around it that I could see at the time was you can get some more education coming up here. But there was no, there was no, because we were bank as well so we had no access to the staff internet and we had no access to a little kind of temp does it, if you're bank. Zero, zero hours, zero hours. So it was like there was no like, oh you're a peer worker but maybe you want might want to become a manager or a team lead or, you know, a director or some kind of role that there was no you could become the peer lead, or the peer strategy person but you couldn't go anywhere else you were funneled we know this about you now into your box. And did you get good support for doing those kind of roles when you were going through periods of illness as well as wellness because again I have and I've probably mentioned it in about a million of my podcast episodes but I tend towards now the phrase living experience rather than lived experience because I'm sick of hearing other people's beautiful recovery journeys when my life is difficult some days and I think that matters. Yeah, I'm me and my friend, Aaron who I do inclusion training with are trying to start a podcast called recovered which is with a question mark, which is getting people to come in and talk about that that very issue. And I was very guarded there were cases and I don't think I can talk about that because that's someone else's story but I was very guarded against my experience of being ill being used against me. I would talk to people and sometimes colleagues were really supportive, but I felt like I couldn't trust it. And I felt like it was very difficult to, like I've said there were certain conditions diagnosis or symptoms where they wanted to have a certain level of clinical involvement in the room. So those stories I felt like had to be presented as it's fine now, you know, this is how I got better. So yeah that was that was difficult and I still don't think organizations and that obviously the NHS being massively understaffed and stuff have got round how to employ someone who may have to take long periods of leave. What kind of role do you put people in how do you put adaptations around that I don't think institutions have got a handle of that and that's why I work for myself now, because I got a bit sick of it, not just working in the NHS but I worked in the charity sector for a long time before then and yeah got treated a lot like people were doing me a favor by letting me have time off when I was sick and letting me go to treatments. So I mean to be honest I had a difficult experience in the charity sector anyway because I got made redundant twice in the space of six months so yeah the funding just so unreliable for roles but yeah I think I think would never get true co-production until people could speak freely about their experience and I think having both physical and physical and mental chronic illnesses and I used air quotes because I find it really hard to separate the two my my physical conditions and my they said each other off and also they're both related to my autonomic nervous system so how do I know which which one is causing the adrenaline dump is it the anxiety or is it the the pots I don't know. But having had both I think there's the tensiest bit more acceptance that chronic chronic illness exists in the physical community, it doesn't mean that people always believed about that a lot of people are told you know it's all in your head and a lot of people are told I've been told by GPS before well you have this but there's nothing I can do about it so off you go or I'm not even going to send you for the diagnostic test because there's nothing we can do about it so off you go but within mental health like you say with this recovery journey being pushed there is a kind of a complete unwillingness to accept that some people have chronic mental health problems that they're always going to have to manage so I don't know what the question was I've completely gone off on a tangent but I can't remember either but I'm enjoying hearing your talking but yeah it's kind of making me that thought about recovery and recovered and what that sort of looks like one of the things I always think that I kind of I don't know I sort of somehow need people to know sometimes is that yeah everything looks fine and it's really hard work. You know, that sounds really pathetic and like I just need sort of people's input and like well done you but actually just some days just getting up and doing what are normal things to other people can feel really hard. And yeah I don't know I think sometimes I try to recognize it in my community around me and recognize that some days just getting to the end of the day even if you haven't got out of bed actually well done. But yeah I think there is a lack of recognition of how hard days can be and it's almost like we have to you know. Yeah, I was thinking about it on a walk the other day I'd forced myself out for this walk because it was sunny and I get seasonal effective disorder quite badly so I was like it's sunny I need to go out and get my remedy. And I was walking and I was thinking, even if it were possible for me to get to the point where I had an kind of average normal level of health for someone my age. Even if I were able to do you know all the physio exercises the you know the self care the find all of the adaptive equipment everything to get myself to that point. It still wouldn't be equal because of the amount of time and attention it would take me to be able to do that. I'd end up with like no time in the day I just spend my entire day trying to look after myself and then from left side something with some symptom would come and knock me out despite the fact I was doing all of the things that I was meant to be doing. So, I think every person with chronic illness has to find some level of balance. I mean if I, it's impossible for me with my different contradictory conditions to do everything that would make me feel better if I did all of the stuff for my mental health and my hyper mobility and my pots that was good for me, my fatigue would crash. You know, there's there's no perfect recovery plan that someone could give me that would fix everything. It's just not possible. And people don't realize we also don't have some magical care coordinator sitting somewhere telling us exactly which of these treatments we should pick and choose and how to balance them all against each other and fitting it perfectly to our individual needs. You know, people see I remember my friend when she was diagnosed with fibromyalgia saying all of my different specialists keep putting me on medicines that are that are contraindicated and I am having to work out myself which ones to take. And I'm like, that's ridiculous. How are you the person sitting there with no pharmaceutical knowledge, working out whether to take the stuff that the sleep bands prescribed you or the pain persons prescribed you, you know, how are you meant to be doing that alongside all of the fatigue and pain that you're feeling every day. It's, it's just the world is not, it's not built for us. The health system isn't built for chronic illness. It's built for acute illness. What is POTS I'm aware that some people listening might not have heard of it and. So POTS is postural tachycardia or postural orthostatic tachycardia. And basically it's a form of something called dysautonomia. And it means that when I stand up. And there are different forms of it as well. When I stand up my heart rate rises. More than it should and it can cause me to faint is the very simple version of it. And the way that happens is for me it's because my blood pressure is low due to my hyper mobility. So collagen that's in our skin and our bones and our muscles and makes this hyper mobile and stretchy joints is also in everything else it's in your veins and arteries. It means that my veins and arteries don't constrict as much as they should. So my blood flow is a lot lower. So for me not for everybody with POTS but for me when I stand my blood pressure drops, which would make me faint and my body tries to counteract that by giving me a big dump of adrenaline and making my heart rate go up. So it makes me it can make me my heart rate go really fast. Make me feel faint. It can cause lots of different symptoms. And there are different versions of it that are caused by different issues. But that's that's basically what POTS is. And I got actually got that diagnosed through taking part in a clinical research project because the cardiologist I saw told me I didn't didn't do the test for it and told me I didn't have it. So then I went to take part in a clinical research study by the wonderful Dr Jessica Eccles, who does lots of work into anxiety and hyper mobility, chronic fatigue, chronic pain and she diagnosed me with it in the, in the course of all the tests that I was doing. And for her research, she said I've noted all these things and I'm sending them all to your doctor and hopefully you'll get a diagnosis now. So yeah, that's what chronically all people have to do sometimes take part in research studies to try and research studies. Anyway, because science. I've got one last quite big question, which is around the kind of the peer support work and the lived experience type roles and do you think bearing in mind that some people do have conditions from which they might recover or that they just might not want to be like the main thing in their life for their whole life. Is there anything I can't quite work out what my question is but that yeah is there a problem there basically might it keep people ill or make them part of a community that sort of prevents them moving on. I think that there is a belief that that might happen amongst amongst. I mean, the thing is everyone has their own journey with chronic illness how much attention and time they want to spend on it, how much they want to talk about it how much they want other people to know about it and that will change throughout people's lives and as well. Because I feel like advocating it at the minute and going on a bit of crusade doesn't mean in two years time I'm not going to be like actually I want to do something else that's completely unrelated. And I do have those moments sometimes where I'm like, I wish I could just do some completely other job that has nothing to do with my illness at all. I think that most people are just trying to get by when they have a chronic illness. And so if that's the work that's helping them work through things or help others with the condition that makes them feel better or it's their way of giving back. Or it's just the work that they can get at the minute with, you know, the way that a lot of places aren't accessible, or it's the work that they can get that's willing to be flexible around earning amounts and benefits. Then then that's fine and if people get to the point where I think I think it's really important in any of those roles that there is opportunity for self reflection. And we do that in any kind of health related role if you're a paramedic or you're a nurse or you're in any clinical role you're expected to do sort of reflections on your practice and and as part of your clinical professional development. If you're if you're working in some kind of lived experience role it's really important to sit back every now and again and think do I still want to do this. And it can be really difficult because if you work for a service that you feel is vital to people, and you think I definitely had this if I leave this might fall apart or if I leave, I'm letting down the people who are meant to be teaching it was it was really hard to step away from it. So it's not always a simple decision to step away. But I think like a lot of areas where people feel like they're campaigning against something. It's important to remember that we don't have to carry the torch for it on our own, and that we've done a little bit and then we can pass it on to someone else for a bit and I just completely paraphrase my therapist on that. Amy stop trying to take stop trying to take causes on all by yourself you've done your little bit and maybe actually you're holding. So that's that's what I was said to me maybe you're holding it back actually maybe you're stopping the next stage of development by not kicking up a storm and walking out the door and and holding things together that really should fall apart because they're not working properly. And so yeah I think I think that it's a nice way to think about it, even if you've carried the torch a little way, then you've carried it it's moved forward a bit. And definitely the thing that running this chronic illness community is teaching me is that a lot of people working together on something can often do a lot more than one person and it's better because you get a more diverse set of opinions than if one person's trying to control it all. Because you can start off with the best of intentions, trying to run it all so that you get that goal and then you can get very sidetracked. And it can become counterproductive, not that that's subtext for anyone I've ever worked with. Amy doesn't want to be sued. Please don't sue me. I have no money I live in a building with flammable cladding on the outside, I have no money, because I might have to pay to fix that. That's a whole another issue. Do you want to go there. I mean I just bring it up anyone I talked to at the minute to try and raise awareness of the cladding scandal in the UK and the amount of people who live in buildings that have flammable cladding on the outside. You may be charged tens of thousands hundreds of thousands of pounds as a leaseholder to pay for that works. So there is work going on at the minute to try and pressure the pressure the government to change the law so that the developers have to pay to fix the shoddy work that they did. But at the minute they have some kind of there's some kind of loophole in the law I think I don't know exactly that means that they have a GT to try and collect some of the money from the leaseholders, which is ridiculous. Yeah, just living there you didn't just living here I was sold a flat that I thought was accessible on shared ownership I was sold a flat that I thought was accessible and affordable. And it's become inaccessible to evacuate by myself if they're a fire and also could cost me hundreds of thousands of pounds. So, yeah, completely the opposite of what I was told it was. Wow. I'm really sorry to hear that. Yeah, this is so following following grandfather. I think there was a requirement for housing associations and building managers to test and check what their cladding and things were. And a lot of places have been found to have found my building went up in the last sort of six or seven years is a new building it's not an old building. And they found that the cladding was flammable and also installed poorly as well. So, we now pay a lot of money for a walking watch of people to walk around our building because we have no communal fire alarms for let us know if there's a fire it's just people walking around a building with their horns. And they're going to install some communal fire alarms soon. And even then we're going to have to pay to have someone on site to help people like me evacuate if there's a fire, which to me feels a little bit like a tax on my disability that I have to pay for someone to sit in a building for 24 hours a day, in case there's a fire in the unsafe building to help me evacuate. Yeah, wow. I haven't really got any words for any of that. I'm really glad there is someone there that means that you would get out safely. The cool mercy is that the company that we are housing association have at least done our personal evacuation plans with disabled people within their buildings. I know people in other buildings who haven't had that. Even though it's a legal requirement. So, yeah, it's difficult. We're stuck here now we own a flat that's basically worth nothing can't be sold. So yeah, definite feeling of being very trapped which for a lot of my mental health issues is not good. There's nothing we can do about it. So I jump between getting very angry and upset and feeling very hopeless about it and shouting about it to anyone who will listen and having to ignore it and get on with things. Can't control it. You can't change. You can't control it. Yeah. Although it does sound like you are good at crusades. So, you know, I'm good at shouting. I don't know if it does anything. We have to reach out to the listenership to the podcast or if anyone listening has an expertise in the hashtag and the clouding scandal there are people who are much more organized and doing much better campaigning than I am on this issue. I mean, I'm very lucky I have extremely good neighbors who have all kind of got together and are talking to each other and sharing information and I have a neighbor who advocates on my behalf because if I looked at it all the time I would not be well mental health wise. So I have sent my updates to him and then he represents me at meetings and things like that which is really great so not that you want to have to find silver linings and these kind of things nor should you have to but at least I've got good neighbors and a very supportive community of people online as well. And what does the future hold for you not necessarily in terms of cladding, but what are your what are your hopes. I don't think very far into the future. I'm doing a masters at the minute. I'm doing a masters in translational health science at the University of Oxford, one by run by an extremely brilliant professor Dr Trisha greenhouse who you should all follow on Twitter because she gives brilliant information and updates about COVID and everything that's going on. So that's my to be honest my focus is to get to the end of that. And hopefully continue to be able to do the chronic illness community work. And then hopefully at some point be able to do something completely unrelated and very creative and you know write a book or something become an artist. Something, something like just for the pure fun of it. I said put on Twitter today that I grew up watching a lot of American professional wrestling. And before I got sick I was going to train to become a referee for a wrestling company and then I got sick and I couldn't do it. And I was like when I was a kid my ideal job would have been writing the storylines for like wrestling it's like panto plus like extreme soap opera with some fireworks and ladrock music, and I'd love to write the storylines for a wrestling company, like ideal dream world job. I wasn't expecting that answer if I'm honest. But that's why it's a great left field. I love it. Okay, well you go go you do that you write those wrestling story things. In the meantime, are you happy I will share all your like your Twitter handle and the link to the community and things. Are you happy for people to contact you if they would like you to consult on stuff they're doing or anything like that. Yeah yeah that's fine I actually have an email address for do it ourselves, which is do it ourselves stream at gmail.com so anything that people want can go through that. What thought would you like to close with I always think it's great to just leave people with a parting thought to be honest I'm just hoping I haven't said anything completely inappropriate at any point. Oh gosh parting thoughts. I don't know don't plan too far ahead. Just just yeah go with it go with things that's what I've had to learn to do with chronic illness. It's been a hard for lesson but just go with go with my gut at the time.