Gillian discusses with Isaac what her life has been like having experienced chronic pain since the age of 11.  She’s had pain for over half her life and it took a long time before healthcare professionals believed her, because they thought she was too young to have arthritis. Gillian explains why pain has negatively impacted her ability to study and have a career and she’s not sure what the future will bring.

CAPE and People’s Voice Media are working together on an important new project. 

The CAPE team is investigating whether exposure to adverse childhood experiences contributes to higher levels of chronic pain in the most deprived communities and the consequences of this. The interaction between the CAPE project, People’s Voice Media and the Community Reporter network will explore how lived experience stories can be used with the research.

So can I get you to introduce yourself? Um, my name's Gillian car. Um, I'm from Glasgow. Uh, I got involved with the research, Um, through arthritis. Um, because I have arthritis myself and fibromyalgia and a few other things

We tend to collect things. Um, but yeah, it helps give me a purpose to to do these things. And, um, that's how I ended up

They're coming to share my story. Um, which I'm excited about. I've not really been given the chance to tell my story in any shape or form

So, um, I didn't even know this, uh, work, so I think it's fantastic. Thank thank you for that. And really glad that you can share your story

So what role does pain play in your life? King is I like to describe it as a constant companion. Um, because it never goes away. And that's the aspect that I think people don't, um, grasp is that they may have toothache and things go away

But imagine toothache in the bone all the time, and you can't escape from it, and it gets there are days. I can handle it better than others. Um, where my barriers kind of break down a little bit and they can't take the pain anymore, even if that pain is at the same level it can

That day is just a breaking point. And I like to call arthritis arty, my companion And like, Artie is giving me a hard time today. Um, is what I usually say to like my partner or my family to try and convey that I'm in a lot more pain

And I think trying to communicate it is the hardest part. I spent a long time denying it, and so it was like this silent thing that I didn't tell anyone about, um because people who treat me differently, Um, as soon as they know that you're in pain and they it's is one thing which is is nice and it comes from a AAA place of empathy and it's appreciated, but it's it's when other people are like, Oh, well, you know, uh, that's what my granny had. You can't have that

I've spent most of my life being told I was too young because I started showing signs when I was 11 and I had, uh, my GP telling me that the pain was all in my head and that I was a little girl looking to get out of school. But I loved school and my teachers pet and proud of it. You know, Um, but it's, um I think it comes down to not being believed

You feel like you're a liar until proven innocent, even by people that should believe you, Um, and kind of go from there like medical people. Um, so I think it's led to isolation. Pain is all that is this multilayered thing for me, and it's always there

It's never gone since I was a young kid and I'm 30 now, so it's more than half my life, Um, and you just sorry, I'm probably going around in circles. Um, no, it's fine. It's hard to talk about because I don't talk about it

So when I do, it's like bringing down those walls makes it all more real. I spend a lot of time telling myself I'm strong and I can still do it. Despite my body

It's a It's like a self meditation, almost and to keep me going, but when they speak of it openly, you're accepting that. That's what it is to say it out loud, and it's it's really hard for me because I I've not done it. I I've not even been to therapy or counselling for pain

Even though it's been happening to me for over 19 years, my twin sister doesn't have P. Um, there's one minute between us. Um, so a lot of people find themselves competing, which I think not clear

And it's not fair to compare someone that doesn't have pain every day to someone that does who was able to finish their degree and have a career. Hm. Um, I tried to do two degrees, and I failed it both

I don't like to say failed because my condition kind of like took it from me in a way because intellectually, I loved engineering and welding. I loved it, but I couldn't do it. My hands, my arthritis, have to splint every day, and the pain in my hands is it's getting worse

Um, as I get older and I I went into teaching after that, Um, and having a suppressed immune system and being around kids wasn't one of my best ideas, but, um, I loved it. Children, they do not judge you. They just loved me for for me as a person

They didn't care about my condition. They didn't see it, which was amazing to me, and I loved it. But my absence is led my professors to turn up and, um, remove me

I wasn't even allowed to say goodbye to the Children that I've been helping teach. And I had told that I had been given some understanding because in the teaching profession, they do try, um, but it's the head teacher had arthritis, and I thought, Well, this it's going to be wonderful, this nursery that I'm working on. But it turned out just because she could use crutches didn't mean I could use my walking stick

It meant that I was a hazard, and I was treated differently. And it it's weird to be treated differently by the adults and then not at all by the Children in the same venue. It's just a very weird experience, and and I miss it

I I do miss teaching you. I I've talked to a lot of people that have chronic pain that are older, and it's set in later in life, and they were nurses or they were doing all these amazing things, you know, and had careers in life. But I wasn't

I didn't really get that far. It's, uh, I feel like that's what pain has meant to me is that I'm seen as someone that can't finish things. Some people see me as lazy, and it's hurtful because you don't feel lazy when you force yourself to get up out of bed, even though your whole body is telling you not to

Sorry, it's fine. You're doing so well. I'm just so I mean, the amount of effort it takes to do things when you're in pain, like it's the opposite of being lazy

It's being I I just, um I don't know like I always think of. It's like the smallest things can feel like climbing a mountain, which are no, I know. Yeah, even the simplest things

Like I tried to open a jar of jam and my partner found me sitting on the floor crying because it hurt my hands so much. And all I wanted was some toast and jam, and I thought I could do it by myself and I wanted to, because you need that independence you need to feel like you've done something today because then it feels like the disease is winning. Even if it's something small, like brushing your hair or getting up, you need to feel like you've done something because we as humans kind of We need that sense of achievement, that sense of purpose

And it's it's hard to hold on to that when the pain makes everything so much harder. And I used to explain to people they were like, Oh, why don't you come walking with us? Because we were all poor. And in Glasgow, the best place to do is just to walk about and go around all the parks

You know, when you're poor, you just you go for we join and jumping on and off the subway. We called it a safari. Um, but, um, I couldn't do that

I I I couldn't keep up. Um, they would often walk so far ahead of me that I that they would they wouldn't notice when I went home. So it walking has always been more of an ordeal for me than get a thing to get for me to be, and I know that sounds very dramatic, but and my toes feel like they're broken a lot of the time, and my arthritis likes to go after what I call the be crispy joints, the small joints in your hands and your feet and it

I've taken a lot of damage because it took a long time to diagnose me because of not being believed. I was put through a barrage of tests over six years, never really explained what a lot of it was, and I never really knew what was going on. They would explain to my parents, but then I wouldn't get to explain things to them

Um, and then when I hit 18, my parents would stop coming to it might have been before then. I can't remember. I just started, ended up going to hospital by myself, and it would have been really good to have someone to go with me at any kind of support, because when you're in pain people can manipulate you for for want of a better word, it's more like doctors are like, Well, you can't really feel like that

And then I was kind of persuaded out of how I was feeling, which I've since learned is medical gas. But I didn't know that. Then when I was a kid, I didn't even know about any charities that might help me

Like breast arthritis. They were founded the same year that I was diagnosed. Well, er, arthritis care

Scotland was founded the same year. Um, but I didn't find out about it till I over 10 years later. The same post thing is so terrible that I feel it

It's shocking in a way. And I hope that maybe people like you guys can try to highlight things that would be good for people working. Um, because there's not an awful lot of support

I think that's why we become so insular. Hm. Sorry, I I'm going off in all these different

So So that sounds really shit, um, being gas light or medical. So, like, if you could go back, what would you want those people to hear, like what needs to happen differently for people like us? I'd like them to treat me as a whole person, not as this one specific problem that they want to. It's It's like I'm a puzzle that they want to solve, and when they've solved that part of my puzzle

They're like, Oh, well, that's me done. Bye bye. Go

Um, when really, that's only a small part of a puzzle, that of me as a whole. A lot of them don't give you a med and be like right, that should sort you. But then not think about the side effects of that med medication and whether or not I can take those side effects or whether I want them in my life as well or whether or not I can There's pros and cons I found

So what you put in your body and what you want to put in your body. And I didn't know how much control I had. I was given an injection that I I knew from the start

It wasn't good for me. It was causing severely depressive thoughts, and I I already suffered from depression. But I knew that this was different and it was it was bad and and I just decided No, uh, this is not good for me

What? I was reading online the drugs called Mina. Um and I it nearly destroyed me. And it caused nerve damage in my leg as well

From where a pen misfired. It didn't even put medicine in. And now I've got a part of my leg where I can't feel anything

And, um when I tried to tell the doctors, they were like, Oh, show us the pen. And then they took the pen from me, so I didn't have any proof anymore. Um, so it's I don't have a lot of trust, um, with them, and I feel like if they what I would really love is when they meet someone, try to stick with that person

But when a medical professional knows me like my rheumatology nurse, she knows I won't contact unless I really need the help. She knows me very well. We've been together like seven years now, so she's gotten to know me a lot

But now they're trying to promote her, to be head of the world. And I'm getting shoved off to other people. And all they keep saying to me is, Oh, I need to go talk to her, then

Oh, I need to go talk to her then. And I'm like, Well, why can't I just talk to her? Because it would have been fixed within like 10 minutes if me and her could just speak and she knows. Um whereas I feel like there's a lot of road blocks and NHS where you get sent to people that are like, Oh, I'll have to go check that

And then that's another two weeks of a week, you know? So it's, um I feel like if they considered that if you're in so much pain that you're on the phone crying and needing help that you just your existence is awful and not worth living that they should really try to make it a priority to help with your well-being. Whereas I've got a lot of people saying to me, Oh, well, you're fat. So you should lose weight and maybe that will, you know, put some less weight on the bones, then maybe that will mean less pain

And these are men, male doctors, some female. Actually, yeah, I'm not gonna lie on both sides. Um, it's, uh, it's not great

Um, and I think it's the lack of empathy, the more knowledge they accrue. It's like they can't seem to fit empathy in anymore. And I'm not saying they don't have it at all because they're wonderful people

they go into a profession for caring for looking after people they want to help. It's just when they get all this information in their brain and years and years of slog and hard work and all you know and and it it should come to something a job with respect and we do respect them. But sometimes they don't get respect

Or maybe their superiors aren't that great for them. I've seen a lot of junior doctors being, you know, their superiors weren't nice to them, and then they're not nice to me. So it's like down the line in a way, um, so I feel like it's not all their fault

And that's why I want to get involved in the pilot programme with arthritis to try and talk to medical students, because I feel like if we try and talk to them young and give them a perspective of people like us, which is exactly what you are doing, giving them a direct shot into our lives, you could send them. You know, our videos and be like just watch these, watch these people learn from them if you can. If you don't take anything away, then we need to have a chat

You know, like, um, I feel like that's I know That's an awful lot to say to someone, Um but I would love it if if they tried it and it's such a hard job, But I feel like we need to put measures in place for them to look after their their well being as well, because they're not thinking of their own well being. So I'm not gonna think of it in others. So I just It's a whole Met tale

Sorry. No, I was just like you took me on such a journey there, and I was thinking that it must be really difficult if a doctor learns to want to fix something that actually pain sometimes can't be fixed. It's even with medication

Even with support people still living with that, it must be really difficult. Yeah, in a way, I think they could be in denial that they can't that person in a way. And I think that the way of dealing with it is they distance themselves a bit because they if they care too much about everybody, I think they go mad and you don't want that for them

But that's why I think that they should only be connected to a select few and really get to know those people and not overwhelm them with all the loads and loads and loads. But I suppose we don't have enough staff. That's all I'm hearing now

Any time I try to contact any medical professional that were understaffed or they just say covid and shrug, um, which is lovely because it doesn't really explain anything. Um, especially when you're trying to get help, because you just feel like, oh, well, the world doesn't care about me And that's kind of how you're made to feel, though as a disabled person like you're a burden because I don't know. It's like every day every person I know that works

They're like, Oh, well, I was working. You wouldn't know what that's like or, you know it's a There's a sadness for us because we want a job and we want to be productive, and we want to help people and be part of society. It's built into us as humans, so it's I think it kind of offensive that even my own family, like my twin sister, would be like you don't have a house, you don't have a job

You finished the degree like she would use these things as a as a thing against me when it shouldn't. We put so much pressure on people to have these milestone. Hm

I was expected to go to do certain things because me and my sister were considered smart and from from all our teachers. But I started bombing my exams because of my condition. And because I didn't have a diagnosis, I couldn't get extra time

And I didn't know why I couldn't write and why I was in so much pain. And all these teachers were like, What's wrong with you? We know that you know these answers and acting like it's my fault. Like I was doing it on purpose

There's I think it leaves scars for a long time, and I think they should really try to prioritise help with mental health because I've had people see me. Oh, you've got depression. And it's just reactive depression because you're in pain all the time

And, um, that could be true for some of it, But, um, I had it before. And if I'm having a good day. I can still have a low a low day, so I think that it's not that simple

And I was never sent for help at a pain clinic or counselling or an innocent, really. And I've had to face them to see my doctor, to see anyone, to get help of any kind. And it's exhausting

And I've kind of given up with covid right now because I can't I can't seem to get through to My doctor and the reception team are triaging and they're lovely. But they are being horrible and saying that, like trying to diagnose you in a way like a doctor, or like Oh, maybe you should go to the pharmacy when as a person who has a long term condition, you would think that you have priority. But you you often don't unless you're willing to go on a phone and just start acting like a crazy person crying and screaming

Then someone's like, Oh, well, we better do something, Um, but you don't always have to Oh, you don't always have the energy for it, you know? And yes, it makes me not want to look after myself the way the health system is right now is in fact, um, on Friday, I got my medication delivered and it was over a week late, like 10 days, and I ran out of medication. So I phoned them and I said, Look, I need my meds. I have none

And so they got some out that day, even though it had been 10 days late. They should have been out sooner. And when the guy delivered my meds on Friday there he, um he said to my dad because I couldn't even get down the stairs to the door

He he said they weren't going to deliver to me anymore that, um, it wasn't possible and that I should try and find somebody to try and help me. That's like the only pharmacy I could find in Glasgow that's still delivered. My doctor's surgery specifically sent my prescription to them so it could be delivered because of my mobility

And the guy is answering the door with my and things like he's he's not seen me very often, but he knows that I struggle to get out and they've just taken it away because they're too rushed or I don't know they don't have someone to do it, and it's just totally through me because now I don't know how I'm gonna get my meds in in January and I'm supposed to order my medication around my birthday in January, and it's just made me not look forward to my birthday because I know I'm going to have to be going on a bunch of different phones trying to organise a pharmacy that will be willing to deliver to me or I'll have to try and go there myself using a wheelchair or try to beg someone to go and go for me because I, my mom and dad, are both disabled. They really look after themselves, and I I can't ask them to do that for me. It's just too much

And I told them that and my partner works. That doesn't stay with me, so he can't do it either, because the pharmacies are shut by the time he finishes work. So, like it leaves me in a position where I don't know how I'm gonna get my medication and they do it to me a lot

But this isn't the first time that they've They've said right, we're not delivering anymore. They did it once before and I phoned him up and I was upset and crying and he was like, Right, OK, OK, we'll keep doing it. But I feel like they've just been waiting for another opportunity to do it right before Christmas

It's just like so. Oh, it's just not nice. It sounds

It sounds terrible. It sounds so sounds like a very hopeless situation. You know, if you can't get out and about how you get, I just don't know how you get your medication

I know I I'll end up having to plan a whole day around it where I try and get up and get myself ready to try and go myself. But that would be like a whole day and the next day, maybe in bed, because of forcing myself to go out because I don't go anymore. I really struggle, and especially right now with the A and everything, it terrifies me because I've had holes in it

When you take a hit to one of your joints, it's I end up getting damaged there. If I fall and hit certain, I don't know. Other people have said that about arthritis

But if you take a fall, you can often get arthritis in the joints. It takes a hope. I worked here in the park one time, the only time I've ever gone to a festival in my whole life, and I was working it and sleeping in a tent, which was awful, never did it since

But some guy jumped on top of me and hard money. And ever since then, Money has had bad arthritis and and he, like, landed on top of my knee and everything. And like they, they even deducted my pay because I went to the medical tent to get assessed after

Oh, I know it's It's just the norm in a way, though. Like, I think a lot of people think, um, because we're British. There's a lot of things that we think should be, but that doesn't mean they are in reality just because we think that Oh, well, that's how I've heard it should be

So it should be that, um it doesn't always mean that that's the treatment that you're gonna get and sorry. I'm sorry. So can I ask you? Like what? Why did you get involved with the Cape project

And what are you hoping like, What do you hope happens as a result of your involvement and cape? Um, I like the sound of cake. I was, um, showing like, a wee description about it through versus arthritis. And I've been involved in quite a few, um, research projects through there

I've spoken to a bunch of different universities over the years, and I've done it quite a lot. So when this opportunity came around, um, the woman who Maureen, who does the research for verst arthritis, she sent me an email immediately. And, um, I thought it was funny because the lassie, um who's who's like our liaison for the cake was called Gillian as well

Um, so I was like, Oh, it's meant to be Let's do it. Um, especially when I heard about pain and its correlation to childhood. Um, because I feel like there's there should be a a connection

Somehow I I don't know if everyone is the same, but a lot of people that I have met that have conditions of some kind I haven't had it easy. And there are people that I connect with. Um, so it it's a It's a running theme that I've noticed in a way

So it's it would be really interesting for me to find out if, like where it goes with it, because they're using the cohort study. There's there's so many different aspects of it, not just our group, um, which I think is great. I'd I'd love to meet them all in person because they've become like a wee support group

Um, there's not many support groups, so I feel like Kate has become an unofficial one in a way they might not have meant to, But it, um they brought people together and we were able to talk about our pain with others that are in pain around, and it was seen as being useful. And that was like, Oh, that that that's like a revelation because any time I've tried to speak about pain or even just try to talk to someone about it to try and get it out of my brain, it you know, people run away from their own pain, never mind others. So I've often got the reaction jelly or people just actually don't say anything and walk away

Um, which particularly hurts because you feel even more invisible than you already are, especially when people don't even acknowledge what you said. And it's particularly hurtful. Um, so I just need to drink

No worries. All that chatting. But yeah, I I found it because I can't work

And I've been so not fit for work and been able to do a wee bit here and there and actually have a somewhat social life. Through video calls with the people, you feel useful. You feel like your your knowledge has been taken for what it is

Um, and it's a It's a nice feeling, Um, because it gives you a bit of purpose, and it makes it kind of for me, it makes me feel like the pain is not quite worth it, but like it, it has a meaning somehow, because I'm gonna help other people. Generations. Maybe I won't meet them

But maybe it will make the world better. And if if I can help that way, then then I can. Then I will

And I've met a lot of people that are in the pain that feel the same way. And I don't know if it's because when you have a big day. You can't bring yourself to heart, Father

You just wanted to help him. Absolutely. And you've been so you know, just sharing your story

I know it's not been easy, but I know it will make a difference. And, you know, I'm I'm glad that we we got the chance to talk. And I'm glad that Kate's got your stories and your involvement

What? What do you hope? What do you hope people understand from these stories? I hope they understand it or just real people to not treat as different and to just be who you always were. It was. It's when people think they have to change or they feel like they're forced to change around you that you lose people

I've lost a lot of friends, and they're still friends with my twin sister, which is particularly hurtful because it's obvious, um, that they just didn't want the extra hassle of someone like me at a party. Maybe, um but I am. Oh, sorry

It's OK. What was your question again, Mum? But I'm just totally frazzled. So I think my question was, uh, I was asking you, like, what do you hope people take away from these stories

What do you hope people learn from? Um, Well, yeah, I just, um I've never really thought about what they might take away. I don't want them to be upset, but I want it to leave an impression. And so that they if they see someone and that's struggling, they might think of me or one of the others and think, Well, what if it's like that person and maybe it will change their approach? Maybe they'll go and help that person

Maybe. I don't know. Maybe they'll be kinder

Maybe they won't just think. Oh, they're drunk or they're this. When I was young, I was taking methotrexate, which is not my pan

And then I felt dizzy and I laid down on the street because I was going to collapse and I put my legs up on the seat of a bus stop to stop myself from fainting. I was trying to get the blood back to my head because I didn't want to pass out in the middle of the street, and some woman was walking past and she was like kids these days on drugs and just kept walking, and it's always stuck with me because she didn't know me. Yes, I was on drugs, but not the kind that she thought I was on and that they were having a bad impact on me

And she could have checked if I was OK. You know, um, I think people jump to the bad very quickly. And I think if they could jump to the good and think that's a person just like me, you know, like I think the more we do that, then the closer we can get to a better world

As corny as that sounds, I I don't think it sounds corn corny at all. I think it's what's needed, I think. Certainly, um, knowing that there will be people with, you know, medical professionals, hearing these stories, knowing that, you know, believe people and treat people, you know, and that why this sort of thing so important? Yeah, I I do think it's so important and it's wonderful and it it does feel like a safe space with yourself

I think because I don't know if it's because I can feel that you understand and I don't know, like there's there's a sort of kinship with when you meet other people that have or and they just cannot get it. And, um, I think it it kind of it helps us to be able to open up when there's people like yourself. You know, um, it even makes me want to get involved

But I don't know if I'm in the right headspace because I end up sitting there greeting everybody's stories. Um, I'd get too involved in, So I, um, I I do think it would be wonderful. Um, and with arthritis not having as many opportunities for me, I'm looking for other avenues

Um, so it's I I do think that it's it's been a really great experience. I mean, I was scared of it. Um, but it's cathartic

I found it, quite. Yes, I cried. Um, but I tend to do that a lot because I've not processed a lot of things

Um, so I I tend to tell my doctor they don't have control of my tea gut. Um, but it's, um it's, you know, it's, uh I don't want to be all like, why are you in case of and in a bad place? I I do have my guinea pig with me He's my companion. Um, also, that's something else

By the way, I've noticed people that are in pain. Every one of them have heads. Everyone

I've met every single one of us. We love animals, and I don't know. I don't know what it is like

We have to have at least one animal if it's a hamster or a cat, or like maybe not a dog. It's got a small dog for us to walk it. But you know, there's always an animal, and I love that

I just I love it. I think, like so. I collect people's stories on lots of different issues, challenges, uh, lots of different experiences

But I've never collected people's story on pain, and I've never even like when I've heard everyone on the Kate Project talking. I was thinking about, like, my own experiences that I'm married, but I don't feel able to often talk about it because you don't want to be that person always talking about pain or how when I will go and do a piece of work, it might take me a week to recover and the things and feelings that we've all spoken about, how much we don't we? It's how difficult it's been in my own life to talk about it, how difficult pain is on a daily basis. And sometimes it's like I'm listening to my inner thought, bit of someone else saying those, um and I and I do have a theory about the pets, which is because I spend a lot of I spent a lot of time at home being not so so well with the pain of life

Having a pet is just like having somebody there that just understands you, and it just so loving. Um, that's why I've got mine anyway. So I just maybe that Oh, definitely, I'm the same

In fact, I rescued Henry like anything that we do in the background, and he you're meant to keep them in tears. But he was wasn't in a good house, and I heard about it for a friend, and I turned up two hours later and was like, I'll give you money for them. Just hand them over because I heard that they were going to check him out on the street and I didn't like that, Um, and I was like, give me the address and, um So I turned up and I got him, and he was very feral

He hadn't been handled and things and very scared and gaining his trust gave me something to focus on. Gave me something to get up out of bed every day for to look after. And he lies on me every day

He lies here and goes to sleep, and it it's wonderful, like they do give you that kind of, um, companionship and just like, unconditional love in a way, I felt that in the nursery with the kids that I taught, like they just love you for who you are. They don't give a crap about all the other stuff that adults do, you know, like they don't have any of that baggage in their brain, which is why I loved it. Um, And it it's, um, in a way

Helping with research is like a way I can still use that part of my teacher brain by helping teach others about pain. Um, which I I think keeps me going because it's, um you need something. Otherwise the days kind of stretch out, especially when it comes to pain

Um oh, God. My injection site is a bit annoying, but, um oh, it's because I've had to self inject a long time. And they gave me these new injection pins and they're a bit thinner and I'm just like, Are they trying to make them harder for people with with gummy hands? Like I, I feel like they are, because they gave me a different injection one time that you had to twist to unlock and then press a button

And I'm like, Seriously, you're asking me to do this with my hands while I'm lying, trying to, like, inject it into my tummy and it's like you're asking too much here like, um so sometimes you feel like you screw up, but injection sites always hurt. That's why I use. I've got many ice packs, but I've also got these, which are awesome

They're ice packs that fit your fingers. I'll try and put it on so I can show you. It fits on my finger for when my fingers are all swollen and sore, and I was using my roller ice pack for the arthritis in my jaw

Um, I do it before every video call so that I'm able to talk right now I can feel heat coming off of my face. Um, I even frightened my dentist one time because she was like, there's too much heat. Go away, Take some

She wanted me to take anti inflammatories, and I was like, I've already taken them. And she was like, No, you haven't. And I was like, Yeah, I have, and I don't want to take more, but they don't always understand why you don't want to take more

You're like, Please don't make me like, but yeah, um I just thought I'd tell you that in case like there was, like, students that wanted to know about things that we used to help. Maybe. I don't know, but yeah

And how have you How have you have you just learnt these things from other people or medical professionals? Have you just discovered found a way that works for you? It's more just had to discover it by myself. Um, medical professionals were very um this is what you have. We'll give you a steroid shot

Off you go. Bye bye. You know, but they wouldn't give me steroid shots many times because I was so young and it affects fertility and things

And now that I'm older, they don't care as much. But, um, I still don't like getting them because they don't work for very long. For me, they work for, like, two weeks, even though they're meant to work for, like, two months

Um, so a lot of medical professionals, they don't think other than medication. A lot of them They tell you to go and ace it. But they don't tell you how you really go about it, because I'm like, Oh, hot and cold helps

And I'm like, What does that mean? Well, the hot means like a bath or hot water with some maybe some sauce, which I found not fantastic. But also, I've got an ice pack that fits every aspect of my body. I've even got a hip ice pack

It's like a thing, you know, because it clips around my leg and it clips around my tummy, and it goes around my house, and it's fantastic. Um, but I had to find all that myself. It's all trial and error or when you meet other people, um, that are part of the gang that I like to say

Um, you you tend to get wee tidbits from them. You know, like you learn things like on the research called the other day. I was talking to one of the other last season and she mentioned a side effect or about fibromyalgia, and I was like, Oh my God, I've had fibro for ages

I didn't know it That was that. Like I I thought it was to do with one of my medications. I didn't know it was a side effect of fibro

It's hard to know what the culprit is, and I'm sure you get that more than anything you're like Wait, what's causing? What? I don't I don't understand. And then you talk to other people and you're like, Oh, OK, but sometimes it's not, You know, you take it with a pinch of salt while other people's reactions, because what works for one may not work for another, because I started on the injections of of a new version of the injections that I'm now back on, and I and I start having seizures and yet I know somebody that's on them and is that is having a great time. Their pain is fantastic, you know? So it's I was unlucky

Sometimes it's just a cocktail of med that's in your body all the way up to your all the way through your life up to that point. And then you add in this new big drug, and then your body just says, Well, that's enough and my body shut down. And you know, like I've seen it happen to other people on different beds that I've been on and not had a reaction

So sometimes you need to take it with a pinch of salt, because sometimes there can be a bit of scaremongering, which is a bit scary. When I joined our fight groups on Facebook, it was too frightening because there was a lot of people older than me that were seeing all these things. And I thought, Oh my God, that's my future

Oh my God, Oh my God. And you start freaking out and you've got that whole existential dread going on. I don't know if you get that, but I certainly do

Sometimes I dread to exist because I know if I'm bad now, it's what am I going to be like? Um, it's a big worry, Um, and and I don't want to have kids, and I don't know if I'll be able to, Um because my mum had 10 miscarriages. Me and my sister are the products of I V f. Her only chance that ID f I might add

So it's a very a slim window that that I even exist. So, um and, um, it was hard for my my twin sister to get pregnant. She's not got half of the things wrong that I do

So it's, um it is a worry. And yeah, I've got things like my partner's mom saying, You know, uh, you gonna have a baby? And I'm just like, Oh, it it's It's hard to even think about it when you've got pain, because it's a worry about passing it on as well. But for me especially, um, I don't want to see someone in pain

And it's my fault. In a way. I know it's it's not really my fault, but it's it would

It would be hard, and I feel like that's why my mom can be in denial. A lot of the time about my own pain is because she can't accept it. It's too much

Um, and I don't know if my dad feels guilty about it because I get psoriasis from him. And my arthritis is psoriatic arthritis. So it's connected to the skin condition

Um, I do have pretty bad skin, even though a lot of people don't, I I don't I don't look it because I moisturise a lot. Um, and it's taken a long time for me to get to the point where I was getting bullied for it on my face and things. And, um, it was it was hard because then the pain started as well, and I There was a lot of things that I didn't know what was going on

And you know what I was told when I was really young that I had the markers for arthritis in my blood and I when I was eight, I was like, Oh, can you take them out of my blood? And they were like, No, and and and I was like, Why did you even tell me? But I think what they meant was the markers that I could trigger a disease. I think they know that you have these markers that certain conditions need to be met for you to actually trigger the disease. And when I broke my ankle and I jumped off a wall that size landed my ankle underneath me and my dad dragged me up and was like, We're walking home and got me to walk home And my mum took one look at me and when we got in the door and was like, We're going to the hospital, she used to be a nurse

Um, years before she got cancer. Um so, like she was like, No, it's it's bad. So that's what triggered arthritis, But it took a long time, and for them to even took over six years

So I'm hoping, hoping that by using these videos, my other hope is to actually shorten the waiting time and I don't know, like, make it a bit a bit easier. I guess I was left high and dry by a lot of people walking out with appointments, not knowing exactly what had happened. And I didn't have anyone with me and I was young, and I think that's why I went into denial and I just refused to see any doctors for like, nine months

I was ignoring them all. I was I was young. I was 18 and I left school by the time they finally diagnosed me and that screwed up my exams and things

So I was angry and and annoyed at the world, and and they gave me no help with any of that. Even though I've been going through procedures for a long time to try and figure it out for ages. I remember they hooked me up to this thing and gave me electric shocks to try and figure out if I if I induction kind of a condition, I was so young and I didn't know what they were doing

As far as I was aware, they were just torturing me for an hour. You know, um, I want them to try and talk a bit more kids to make them a bit more informed. Yeah, it can scare them

But even if you dumb it down as long as they know something they can hang on to I just remember feeling scared a lot of the time because I didn't know what was wrong with me or if I was gonna nearly die like my mum because she's nearly died so many times throughout my life. Um, she's had, like, operations, um, cancer twice. And, you know, like more than half our veel removed and things

So like it's medical stuff runs in my family. So I think growing up and finding my mom one time when she wasn't breathing and having to phone an ambulance when I was young and the doctor told me that if I hadn't done that, then she wouldn't be here, and I think he thought that he was doing a good thing. But I started going in and checking on her, making sure she was breathing every night and things and like it

It was such a muddy, you know, that we would lie in bed with her sometimes and like only get kicked out. My dad wanted to go to bed. Um, so it it gave this kind of anxiety that I had to look after her and I didn't want to look after myself

Um, and even now when I'm having a bad day, I'll still try to help look after her, because I see myself as not as bad as her. When really I started getting worse, as like as I'm getting older, so now it's starting to show a bit more, so people are a bit more accepting because there are physical manifestations. I thought some have moved out of alignment of things

I don't know if you can see that I can. Yeah, when you have something that's obvious and it's it's not meant to be like that and it should sit up here and the pain is just always there in that joint. And that's the hand, right with, um, and it's the hand I use everything for

So it impedes every single aspect of my life, you know, and I can't open a door. I can't do simple things. And when stuff like that starts happening, that's when you get a bit more accepted because when I was young and they couldn't see it, I was forced to keep going until I dropped sometimes until I fainted because there was too much pain because I just had to, because people couldn't see the condition, whereas now I'm older and like I don't care

You can't make me do anything like it's different. I had no confidence whatsoever and I was pulled fat by everybody, including doctors. Even though I'd been a dancer For years I competed as a dancer and and, um, I was quite fit

So it was hard on me to then not be able to do things that I'd always been able to do. I used to climb trees and stuff, which my dad hated it. Like we turn around and be up a tree

Like what? I still look at trees sometimes and plan how I would climb them. But I know I can't. I like looking at them going

I would climb there and there and then there and then there, and then you're like, but I won't. Sorry. I chatting too much

No, it it's just Thank you. No, not at all. I was just here to listen and thank you for sharing your story with me

Um, do you have any questions for me? Um, well, I just find it fascinating, you know, like how you got into this movie and like, um, did you tell your story and then get into it, or did you just kind of get into it randomly? And I'm curious because, like, I fancy getting into eventually, so I'm just like I was invited to share my story. Um about living with, uh, getting support from social care, shared my story and then never really thought much about it at all. Um, and then they said, Oh, like now you've shared your story, you can become a community reporter

You could do this train, does that. I'm gonna go on the training, But I'm never gonna use it because I didn't think I was ever able to I'd have the energy and the time or be in a good space. So I did the training, um And then I captured one story, and then they asked me to work with them on a a few more stories and it just and now I employed by the organisation

So I had this, like, really mad journey of being sharing my story, capturing people's stories, never intending to do anything other than share my story. And I was a bit like, Oh, I'm not really sure that I want to share my story, but I did. And then I captured some people's stories and did the training

And now I'm employed by the organisation, which is completely That's amazing, because I I was curious, you know, because I was like hearing other people's stories. I think that I I I don't want it to seem like it's intrusive or nosy, but I just I find it fascinating because I I I love to read some books growing up, and I used to get lost in other stories. So I I find it fascinating to hear others, um, in their perspective because I always learn from it

Um and I don't know if that's the teacher in me, but I find it really cool. And I just had a feeling that you might have gone through a journey. I don't know

I just was curious. Yeah, definitely. And, um, I'm sure, And and I will, Yeah, I will tell you that that that the stories Because I think sometimes like the things that we've you've spoken about today, it can be really easy to detach them from a person

It, you know, and stories keep them very human. They're all very different. They have different experiences, different things that we can learn from different opportunities to learn

So that's why I love stories, because they just keep it real. Um, and even though it can be really painful, and even though you know people can get upset or, you know, I I think people want to share their story because they wanna make a difference. Like you

You wanna make a difference? Hence why you're sharing a story. So, yeah. I mean, I think we will continue to collect and develop these stories, particularly for capes

It's really cool. Like I did. Do they have a specific plan of, like, showing them or what we be told when they're gonna be shown? Or is there like, a protocol? I'm just curious

So we're gonna be inviting people if we want to share their story to come back and look at some of your stories, Some other people stories. And what we do is we look at what are the key messages and themes. Um, are there any, um, ambiguities or areas that are, like, surprise us? But what are the key experiences that are coming out? How can we use those experiences to to make change and they're the reason for change

So I think you touched it earlier. Like, I think if a medical professional heard your story, then it might help them with their training and practise. I think sometimes a lot of people don't hear these stories

I know it's it it it can like. People can take their health for granted until it's not, you know, and I think a lot of medical professionals, some of the nicest ones I've ever met, and that's not I'm not generalised in all of them. But there was this one lovely woman and I woke up in pain in the middle of the night in hospital, and they're not really willing to give you food and things during the night

But I wanted to take some painkillers and I was like, I need something to take with it. Otherwise I'll be sick and And she went away and got me some cake and I could have kissed this woman because I was because she was like, I think you needed some cake and I was like, Oh, oh, my God, like it's just when someone does something. It's like she was like my sister's got pain and she just, like, cuddled me and then walked away and I was like, Oh, and it's I don't want people to have gone through hardship to understand me, but it's often those people that have gone through hardship that do, and I feel sad for it

But at the same time, I feel grateful for it for myself, you know? But it's it's sad that that those are the people that we connect with that have gone through. So sometimes that's that's the way of it, and you're just challenged a lot. But it's been wonderful to be able to kind of get it out to you

I mean, I actually had no plan. I had some notes, but I just thought, I'll have no plan. I'll just like, talk to me like we're chatting and just kind of let what comes out kind of come out what my brain wants to talk about and things, um, and I think I managed to cover, you know, a few things

At least I wanted to anyway, especially because I feel like one of the points was that I was always too young to be sick. Um, and that's something that people think people are older, especially with arthritis and all my granny's got that or whatnot. Um, and that was one that I wanted to highlight was that there's an offsite end of the spectrum of like, younger people, Um and and I I remember talking to someone who was like a nurse

And she said that she felt like she didn't know what was worse. The fact that she'd had her career and got arthritis later in life or me that had gotten it so young and didn't have a career like she felt like it was worse for me because I it stopped my whole life and it's dragged. Um, and I feel like if I'd had some support, then it might not have gone down in such a burning flames as it did, you know, And when you're alone, you tend to isolate even more, and when you don't know what to do, it's it's hard and pain just kind of frazzles your brain in that respect

Um, but it's been it's been really cool, though. Um, I don't think the people's voice, because it is wonderful, totally hadn't heard of, um, the work before, you know, and that's why I love research. I think I I get to learn and meet so many awesome people

It's pretty cool. Um, so I'm hoping that, um, I wasn't some sort of rambling mess because was amazing. The one that you showed us off

She was so amazing and calm and collected. And I'm just like a crying mess. And we take bits from all the different stories

So I will send you the concept form again. Um, And what will? What will happen next is that we will come together to look at some of the stories, and we're working out what we want to do with the stories for Kate. So and you'll be part of that

And you'll continue to be part of that. So thank you so much. Um, shall I stop the recording there? Uh, yeah, that's that's right


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