Isaac explains to Deb about how healthcare professionals could support people who live with chronic pain by taking a holistic approach, and listening to what people need in order to have a life with purpose and meaning.

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.


computer. Brilliant. Good morning. Would you like to introduce yourself? Yeah

So I'm Isaac. Um I live in East London. I have four dogs live with my husband

Um, I work for an organisation. Organisations that I really do a lot of stuff on co-production and co-production for me is really important because it gives people a voice. It enables people to have a voice, um, favourite part drinking gin and eating pizza

And I am live in Stratford, which I absolutely love living in East London. Thanks, Isaac. And what role does pain play in your life? Uh, the role that pain plays in my life is a really complex role

So as somebody that's lived with pain for really, um, a long time, it has been at times heartbreaking, frustrating, Um, sort of, uh, when I feel like I I don't know how this is gonna come out. So, um, sometimes I feel like my my brain, my body and my my mind and my body don't work in in in the same space. And when you live with pain, it can be really frustrating because you might have lots of things to do and then actually on that day just not be able to do anything that's had a massive impact that's impacted more than any of my other health conditions

Because a lot of people don't one believe that you're in or I'm in as much pain as I am two. I've always felt like I've had to explain it, and each time you meet someone new, you have to explain it. So that might be having to explain it to friends and family that even friends and family still don't get it, um, having to explain it to, uh, people that you're gonna go and get help from, don't get it

And it just adds another layer of. Actually, I can't have the same life as somebody without pain. Often the pain is so bad, like, um, and I hope this is not upsetting for you, But often the pain is so bad

I just don't wanna be here. It makes me a time to really suicidal. And then when I'm in those spaces, then they say, Well, it is mental health or it's you know they don't want to deal with the pain

They want to deal with the mental health side of it. and actually, if they dealt with the pain, there will be less impact on the mental health. If I could have a magic wand, what I'd want people to do is really understand how pain affects people on an everyday basis

It's it's meant that I have to have different types of relationships with people, can't always do what I want to do. It's affected my health. It's affected my ability to find work and be in in in employment

It's affected all sorts of things, and it would be so much easier for me to be on benefits unemployed, um, popping pills because that's all they ever seem to want to give me as pills, then having a life with that purpose and meaning it comes at a big cost, wanting to have a life purpose. I mean, particularly when you live with long term pain and like the pain is like one element but not being able to think clearly when you're in pain and not being able to have lots of energy. And I always say to people imagine like you're really, really tired and you're in pain like most people would go and lay down, take some painkillers

Da da da. Actually, even laying down is painful. Even being a sleep, you know, if you can get to sleep at all, is is painful

So it plays lots of, um it has lots of effects on my life. Often, people don't believe me, and I have to challenge. And that has had a negative impact on my own well being

And I don't trust professionals, which is really sad. So the very people that you should be trusting, I don't trust them. And I feel like if I have an appointment, I can't talk

I go in there, I'm already anxious. I already know that I won't get my needs met because my experiences has been from Oh, uh, yeah, this is the mummy and daddy issues. This is a historical thing to oh, pain doesn't really exist

It's psychosomatic to Oh, well, it's really, really, really, really bad. So what we'll do is we'll put you on medications that would just make you sleep 24 hours a day. It's never really been about what I needed

Um, yeah. So what would you want those health professionals to give you if you could have a magic wand and do what you want. I would want people to, First of all, respect people's stories really make the process really uncomplicated, So I often get discharged from services and I'm laughing

But it's not a it's a it's a nervous laugh. I often get discharged because actually being able to manage appointments when you're in pain is extremely difficult or when you've got other complicated health challenges, and then you end up being back at square one. So don't discharge people

Be respectful in your approach. Understand what's important to people. Know that there is a long history of people's reasons why they're in pain

Try to explore that, um, validate people's experiences in a really empathetic, genuine way. Don't offer just, um, analgesic medication. But really think about the holistic, um, but also think about the impact that living in pain has people that love and support me

Um, but trust me, help me find a solution and really helped me build the right plan. For me, having consistency has been really important. And I feel like every time you have to tell your story again and again, and that just really traumatises me, um and then having people with lots of power that say, Oh, well, you've tried this

This doesn't work. Let's try this. And like, No, let's try what I think is best for me

I'm happy to have a conversation with you What might be different? But actually, I know what what has worked for me. And I know you know, the other thing is like some of the questionnaires and the measures that they use are just, like, so not human. And if you think if I think about, um, like we in your pain on a scale of 1 to 10, I'm over the idea of 25

I'm not on that 10 scale. Um, to have a really proper measurement of how you can ask people about their pain. Don't just assume that people are doing OK because we have to live every day or I live every day with masking it all just to get through, um, and think about the whole person

So from, uh, their ability to work their ability to maintain relationships, the ability to have, you know, sexual and function and section of relationships and emotional intimacy to the ability to plan for the future. Like I've learned things like, Oh, you know, pacing and that really useful. Like a six week course on pain management is useful, but actually, we live with this

We need long term support. We need places to explore. Um, yeah, I'm not sure I'm answering any of your questions

There you are. Is there anything you'd want? Somebody who is also living with long term pain to, you know, from your experience? Yeah. So I would say Don't give up

Um, there are some really good people out there. Um, ask lots of questions. Write everything down, take a friend with you, and then it's OK to, you know, not go to appointments

If you can't, you know, don't push yourself so it's detrimental. Ask for help. Keep on asking for help

Just don't give up. And then if you're lucky, like I've been in the last six months, if you can connect with other people living with pain, they've got so much advice and information for you. Um trust that you do know your own body and you don't need to be be believed that you know you you are The pain is affecting you in the way that you say it is

If people don't get that, that's their thing, not yours. Um, take the time. Be kind to yourself

Is there anything else you'd like to add before we come to again? Yeah. I think what I'd like to add is that the more people share their experiences of living with pain, I think the better pain services, the better medical science will be. The better clinicians will be

And although then you might have some really difficult moments, there are some really good people out there that can help you. It's about finding your way to the right place. Um, to really get that right support

And don't take no for an answer. That's easier said than done. And make sure they think about you as a whole person

Not just the pain. Thank you for sharing your story. Thank you very much

You're welcome. Thank you. Shall I stop the recording? There

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