Janine tells Isaac about how chronic pain affects what she can and cannot do every day.  It’s very difficult for Janine to make plans because she never knows what her pain level will be and this can be difficult for employers, doctors and friends to understand.

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.

cool. So my first question is, tell me a little bit about you. Who are you? Where do you live? What's important to you? Yeah. So I'm Jeanine, And, um, I live in the area of Scotland, which is a beautiful place

Really, really lovely countryside. Um, actually, strangely enough, I've managed to work full time. I don't know how I do that with my condition, but, um, I work full time into a charity, and that's really, really important to me, but also a quite a big family of six Children who have all left home now, thank goodness

And three grandchildren. Er so a really busy life. And although sadly, uh, during the covid time, I've not got to see him to very much

But obviously, all of that's very important to me. Thank you. Thank you for sharing that

So I was wondering, um, what role does pain play in your life? It's constant, Like I I can't plan anything without thinking about the pain side. So I can't think of a normal day like most people would go up and say right, This is my plans for the day I got up and think, How's my pain level going to be today before I can decide what I'm going to do. And so even if I've got a day's work planned, I'm in a blended approach so my pain will actually decide whether I go to work or not

It will decide when I do go to work. I'll decide whether I come home early and even on a weekend. This weekend's been a wash out because I had so much planned and I can't do anything

I was supposed to go and see a friend today and to go out, um, for maybe a sort of sort of day out. Um, but I've not been able to do anything with her today, so it really has an impact all the time. That sounds like really challenging and frustrating

Um, So how do you like How did you get through? How did you cope? Um, I guess I've just had to Ever since I was 17. I've had this. So, like I just had to like, um I think like everybody, I thought for the first while my whole life stretching ahead of me, I can't cope with this anymore

I don't want to live with us day to day pain. And when I realised and the consultants told me this was going to be my reality for the rest of my life, it was an incurable disease. Then I just thought, Goodness, I just don't know what to do

But, um, as I've got older, I've realised we all have our challenges. And, um, you know, I've met some wonderful people through working in this field and you know who are really courageous, really strong. I'm not saying it's courageous to deal with pain

It's not. We all have our days where we just want to cry and just hide under the But I decided to face through it, fight it and try and live as much of my life as I could. So you talked about being 17, then discovering that you live with chronic long term pain

And, um so I'm just about that journey. So how has that journey been? How did you get the support information? How did you navigate a world of a person living with chronic pain? The first thing was to learn as much about it as I could, so I got involved with the STC Lupus group So it's Lupus is my condition. So I got involved with the Strathclyde Lupus group and they were a self help group

So they helped me understand what I was facing. So to have an awareness and an understanding of it was really useful. And I also became really involved in that group

That's what led me to my future career because I became a counsellor for that group, for other people who were going through pain and, er also sort of run some of the the management side of it. Um, so that took me off in a whole new direction and I plan to go. So it has been absolutely brilliant

I've kept in contact with them over the years, but also supporting and helping a lot of other people who go through pain in different ways other than just look, um, working in charities and continuing. Being a counsellor and supporting others who have been through things really helps me get my own issues into some sort of perspective. Sounds like a really important way to help and to manage your own like I feel like there's this mutual benefit in the stuff that you do, yeah, as people help me as much as I help them, you know, because like it feels important to be helping others and that that makes me feel really satisfied that I'm doing something with my life

Whereas I think the first thing I was told I wasn't diagnosed. I started my condition when I was 17, but I wasn't diagnosed. I was 25 the first thing the doctor said to me, You'll never work and you'll never achieve

Basically, you'll never achieve anything so like to be able to give back means that wasn't true. So that's that feels really good. Well, that's such a profound, uh, starting of a statement

And, you know, that's just profound. Telling someone at 17. Can I ask you? Right? So you clearly have your own lived experience of managing pain

Um, and you clearly would have the experience of supporting other people. So what are the challenges for people in getting the right support? Um, is pain understood? Do people Is it easy to get the right support to kind of do the things that you've talked about? No, absolutely not. I mean, the GP begins to think of you as a hearty patient

You're in all the time with a new symptom, and they don't know how to deal with it, because often they're not educated themselves. They get a general general practises, they get a general oversight. And even when you go to see your consultant, they spend more time trying to figure out how to get you off your meds because they're expensive than they do actually trying to treat your conditions

So it's a It's really, really challenging from a medical point of view. Um, but also like in a working point of view, the discrimination I faced. I couldn't even start to tell you how much discrimination I faced

And I've actually just started a new job and faced discrimination in my first two weeks, where my reasonable adjustments were agreed for me to start. And now that they seem to have gone out the window, so it's because they've realised what that means and that that is really difficult because you try and stay positive and try. Try and stay forward looking

But you have that personal side where I don't even want to go to work tomorrow because I think here I go with another battle, but then you just get yourself up and you go on with it and you face that battle. But each time you meet a new sort of barrier, it's really difficult. And my consultant, actually, I hadn't seen my consultant for two years during covid

Um, because they just weren't seeing patients. And I I really struggled because I'd had covid and had a really bad long covid impact from it and really needed to see my consultant. But if they they said they were going to do a phone consultation with me recently, and I was all excited and I thought, at last we're going to get to the bottom of this

And I started explaining all my symptoms and he said, Anyway, you've been on steroids for a long time now. Could you think about coming off them? I was just like, seriously, I'm steroid dependent, you know, I'm steroid dependent. Of course I can't come off them, but I was obviously on the list to to look at to see if I could come off my meds

So yeah, I just the bunker. So can I ask you, Do you feel that people believe you when you're sharing your experiences? Or is there something about not being understood or believed? Yeah, absolutely. I think I look perfectly well, er like even today, I feel dreadful, but I look OK and, um, I look fairly healthy, you know? So people just do not believe there's anything wrong with you

And it's also because it's not visible that people will say I'll say I'm having a rubbish day today and they say she just making an excuse because she doesn't want to come out or anything, you know? So I lost a lot of friends because they were like, planning nights out, and I'd be telling them half an hour before we were due to go. I'm really sorry. I just can't because that's how it's just like suddenly So you know, it's It's just crazy like that

People don't understand and don't get me wrong. I've got a massively understanding husband. He's great

Even some Children don't understand. They don't understand how, why I can't see them or come to their houses or all of those kind of things. So it's It can be challenging, even from a family perspective

Absolutely. That really resonates with me. and this idea that it's a personal choice rather than it's a condition um often plays out

So you talked about like the GPS. And there were other things that people So you talked about work and GPS and reasonable adjustments. Are there other things that are really challenging to navigate with a condition like lous? It's crazy even to go and use your disabled badge like to go and park because I get out the car and look at the picture of health and people just always get the dirty looks

And even though sometimes I can't even walk the length of myself for obvious reasons. So you know, like obviously my joints will be terrible in a day, So I just can't cope with walking and, like, just in general, even just navigating any of the systems in life, I mean, even the most recent one you might resonate with us. Morrisons staff have been told they can come to work with Covid, and I feel like I can't go to Morrison's so like you know, and I definitely won't go to check out

And my husband went to check out the other day, and I practically shouted at him in the middle of the shop. Don't want to check out because I know that. You know, people are now being told they can just go back to normal life with covid

So how frightening is that for somebody with a condition that it can kill you if you catch an infection? But people actually don't think about that. But the pain you're experiencing, so you're maybe going out a walk. So I'll think I'll go a walk

Um, and then I'll get halfway and I'll think, Oh, God, this wasn't a good idea. How am I going to get back? You know, so it's even like and you so you can't go a walk with somebody that you don't know really really well, because so somebody might ask me, Do you want to go for a wee stroll? And I'll be like, No, I don't want to go for a walk with you because of that. Absolutely

And the thing that came to my mind when you were talking was how unpredictable and that the the lack of control you have over any of that and you can just be stranded and you can just be just always having to preempt, isn't it? And think about 100 and one things before you even do something very simple Going for a walk? Yeah, and and having meds in my pocket all the time. And if I go out with the wrong jacket on and I don't have my meds in my pocket, I'm freaking out and I'm just like, Why did I come here? And you know, so even my new job, I have to drive about 40 minutes to get to. And and last Tuesday I got just outside one part and then started feeling unbelievably sick and thought, I'm never going to make the rest of the journey

But I can't turn back either. And, er it just because my stomach is very bad through it as well. And that feeling of being trapped makes you not want to do it so it can make you really phobic about going anywhere because you're scared you're going to be caught halfway

Absolutely. And what do you think needs to change in in the world in society to to make it much more a place for people on quick term pain can do the things that they want to do. People need to be more tolerant

They also need to realise we are not the minority. There's tonnes of us. People just don't talk about it

I realised during Covid that so many people were shield and that we didn't even know we because we were to say so. Why have we got a society where people are scared to see how well they are? We've got things where when a president in America has been looked at, they say he's too old, he's not capable. He might

You know, we we judge people on how able they are through their health, and and it's apparently a badge of honour. If you're healthy, you know, why do we think that way? We need to change and you know, we need to educate on invisible conditions, but also on all the conditions that people face. And people need to be educated rather than say, this is going to be something that's going to cost me in the workplace to deal with

We need to realise how much we should value and incorporate people in the workplace that have challenges, and why did you get involved with Kate and What do you hope Kate will achieve? They involved me right from the very beginning. I mean, like, even in the development stage, it wasn't a case of it was token. They wanted to hear what I had to say, and I was a stroppy horror to them to begin with

I told them exactly what I thought, but they took it all on board. Everything that I said. They incorporated the took on board

So I trusted them. And essentially, from there, um, they didn't They didn't have any negativity towards me for seeing how I felt, which was really good. And also Tim said to me, Right from the very beginning, this is going to change things

This will change the way medical professionals see people with pain and how they deal with people with pain and looking at it, I think it's transformative. I think it really, really could change. And it also shows the links between childhood trauma and pain, which is hugely important

It's very misunderstood, and I think that's going to be incredibly important for Kate going forward. Essentially, the changes it could make could be transformative. Um, so and And I assume so my question was that Why did you get involved, Uh, in Cape and you said they listened to you and all that kind of stuff

So I assume that you got involved because you want things to be different and just talking about that childhood, that link between childhood trauma, often a very taboo subject and a very, um, subject you have to have a lot of care around. Why is it important to start to have those conversations around the experiences of childhood trauma and pain? Because people just don't know the links they don't understand. And that was why I got involved with Cap

As soon as I saw adverse childhood experiences and pain linked, I thought, I need to be involved in this because it's not only in my own life where I've been a victim of adverse childhood experiences and then developed pain, I had no idea that the reason I became so I was probably a lot to do with living in fight or flight my whole life. And then I met so many other people who maybe had fibromyalgia, autoimmune disorders, arthritis, who had a real history of trauma in their childhood, and nobody was putting those two pieces together. So when I heard that, I thought this I need to be involved in this

It's not that I want to be involved. I need to be involved in this because we need to change the way people think and the lack of understanding. I do work

I do a lot of trauma training, and people just don't have a clue about the impact of trauma. They don't realise how it can impact on your whole body system. Um, and you know, that understanding is very, very important

And I'm wondering about the space or so I'm wondering about. So you've on one hand got these physical symptoms that are real and happening and an everyday kind of experience for people. Then you've got the legacy and, um, experiences of trauma

So do they get kind of support? Do people get support separately? Do people even know that, actually, to support people with long term chronic pain, you need to be looking at some of the historical stuff as well, or is it just not connected or it's not connected at all? People don't link it up. I mean, uh, even at a kind of medical level. People don't link up quite what they'll often say to people when they come in, and they they start describing their pain

They say that due to your trauma that you're suffering anxiety at the moment, but they won't look into that further, and they won't look. They won't think of it as a long term, systemic whole body issue. They'll look at it as you just can't deal with your stress

So it's you that's imagining this pain. The pain doesn't exist. It's somatic, so the pain doesn't exist

It's just you're imagining it because of your trauma. So it's not like so people feel judged, judged. They feel that judgmental side that well, because I'm not coping with my trauma

That's why I'm in pain. It's not. It's a physical change in the body from the brain

It's like, you know, and people, even people who are in the medical professionals, don't understand that that people don't have any control over it. They don't just become anxious because of the trauma. It's your brain, changes its structure when you go through trauma and that causes the pain, and there needs to be a real strong understanding of that

Or if somebody goes to a counselling service and says I suffer trauma and then start talking about their pain, you might feel a bit of a kind of irritation from the counsellor to say, Why didn't you turn up for your session this week? While I was really dealing with my chronic pain, there's there's a lack of linked up, joined up understanding of how that impacts on you. It just makes me think of when we're talking How, um, inflexible our systems are in in society. And if you live with a fluctuating, chronic long term pain condition, you know, some days you might not be able to to, um, go to a particular appointment and then that's discharged from that service sort of thing

So people were just in that reversing revolving door of not being able to get the support they need. That just came to my mind. Um, So what would your what would good look like at the end of the cake project for you? I think if we can really change like so we can get the findings from keep involved in all medical training so that anybody that goes into any part of the medical system

Even nurses, even like health visitors, get to understand the impact and also do routine inquiry and ask people about their trauma. And they actually speak to them. So, um, but also to think about and understand

We need to if we can get to an understanding of why people develop autoimmune disorders or arthritis or fibromyalgia or cancer, even heart disease strokes from dealing with adverse childhood experiences. Hopefully, we can reverse that damage and make the difference. Absolutely, really powerful point there

Can I ask you, did you have anything else you wanted to share with me about, um, living with, um lo long term pain? Just really. I just want people to wake up and actually see we're all human beings, and we've all got our own challenges. So stop judging people

You know, everybody I've met on Cap has been judged at one time or another in their life. Who, You know, the patient participants. Just stop it

Stop judging people you know, actually start thinking that we're all human beings and that to have some compassion and empathy for what people are going through rather than saying that They're putting a kind of barrier in your life. They're not. They're just coping with what they have to cope with

Absolutely. So I haven't got any more questions. Do you have any for me? Er Well, how did that feel to you, Isaac? Did you? Yeah

Did you resonate with any of that? I did. I did. Um, I think I did

And, um, even though I've lived with, um chronic long term pain for years, I've never really felt comfortable talking about sort of my experiences or of childhood trauma. No, I know. I know that the two go hand in hand, and I've done lots of research

Um, that, you know suggest is that when you know you go through trauma, your brain changes and and the pain is really real. And but I always get told that it's not real or it's in my brain. And I get, you know, these conversations about medication all the time

So I either have people wanting to prescribe me lots of medication or wanting to take it away or wanting to deal with the physical without the psychological. Never the two. Um and I'm very fortunate

I have a wonderful husband that understands. I have learned really good things over the years, but it's come at a personal cost. So being the person that has to always be, what you're saying is not right and standing my ground sometimes is really hard

I hope that we will have more and more people. Um, I think in these spaces, and I hope that they get a better deal as a result of the work that we're doing. It's hard

It's like, you know, sometimes I feel like I'm in a washing machine. Yeah, yeah, yeah, exactly. That's what it does feel like

And, um, you never know which cycle I'm gonna be on. So it is very new for me. I do a lot of this work and very new for me to even be in the space of people talking about this

I don't think people do talk about it. Um, maybe I do have one more question. The role of peer support

What is the role of peer support within this? It's absolutely transformative because even to talk to somebody that understands how you feel makes you go away and feel a little bit better. It's like even talking to you today and you see your experiences. And I've said mine

I'll go away and feel a wee bit happier for a while. It's like it. It does

It lifts that feeling of being alone and like having nobody that understands what you're going through apart from what you say, like your partner or whatever. Like you know, it lets you know there's others that feel the same way you do, and it makes you feel like you're a community. So you're a community of people that understand? Absolutely

Definitely left me with so much full. And I feel so much lighter just being here today. Thank you for like, finding the time

You OK? Should I stop the recording there? Yeah. Yeah, that's fine. Yeah


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