Antony tells Isaac about multiple incidents of abuse, rape and trauma he has experienced in both his childhood and adult life. Antony currently lives with numerous types of pain resulting from several diagnoses. He believes that listening to people, believing them, showing understanding and care are key to supporting people who live with chronic pain.

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.

Yeah. So the first one is Can I get you just to introduce yourself? Yeah. My name is Anthony Anthony, Tutor Anthony. I'm just wondering what's important to you in your life

Oh, right now it's friends and socialising. It's being with people that understand me. I think wanting to feel understood and heard and seen is really important and feeling cared for

Those are the Those are the key ones and my dogs. You know, uh, my dogs are. I mean, you can't see her, but you can probably hear her snoring

The dogs are the constant companions. This is Cora. And then down in my lap, um, is Phyllis all curled up? And hopefully no one will come to the door

Otherwise we won't be able to hear ourselves think, because there'll be a cacophony of barking and screaming. So, um, yeah, I share share your experiences. I have four dogs

Um, and it does get a bit chaotic here when they, um, start howling when people are at the door. Thank you for like sharing, um, a little bit about yourself. So I'm wondering, like if you'd be prepared to share with me

So what? Um what does. You know what? So what role does pain play in your life? Pain. Um, pain is a pain

Uh, it stops me doing things. It means people have to make allowances for me. Um, pain is the reason

And I have to use a wheelchair some of the time or a lot of the time when I'm out. Um, pain is depressing. Pain makes me not want to live sometimes, you know, uh, or not want to be alive

I I don't I don't feel suicidal these days, but I certainly have periods where, um I'm kind of like Oh, God. You know, this is fucking awful part of my language. Um, pain is very much a part of being misunderstood or not being understood at all

Um, pain means the difference between being clear headed and being able to think and converse and feel normal and being just fuzzy and dumb. Um, pain. Yeah

I mean, a lot at the moment. Um, I've been I I haven't taken off since September October time when I had some surgery, because sometimes I have to take all off if if I get breakthrough pain and this renal pain, I've got at the moment is really bad. And, um, I've been trading off, wanting to do this interview versus kind of Do I take some more off and say Sorry, I can't do it

Um, and pain is all to do with that. So it just, um yeah, and and pain has completely changed my life. I don't know where I'd be now if I hadn't got pain, but I wouldn't be here

I'd be somewhere else. I might be a lot wealthier. I might have a pension

Um, yes. In some ways, I like my life. Now

You know, I love my partner. I love my dogs. There's lots of things I wouldn't change about it

But there's, um I've been through a lot of trauma, and I think that makes pain harder to deal with. And it makes trauma harder to deal with. Um, and at the same time, it's almost like the pain energises me to carry on

And I talk about some days just getting through the moment. Um, and the moments pass into minutes and the minutes pass into hours and the hours pass into days. And so it is that thing of getting through them And if I get maudlin about it, or why me? I remember what my godmother said to me, which was, Why not you? Which is a really Philo philosophical kind of like retort

Because why not us? Why should this happen to somebody else and not me? Bad things happen and yeah, So that's how I kind of comfort myself. Is my godmother in my head going? Why, Anthony? Why not you? Um, So which isn't about I hate it when people say, Oh, think about other people that have got it worse. I kind of like, I don't want to think about other people who got it worse

I've got it bad, and I don't like it. And I want people to see me. But there's something about why not you, Which is for me, Very grounding of, Um, yeah

Why shouldn't bad stuff happen to me? You know, life is full of lot luck and good and bad, and there's a lot of good luck in my life, So yeah, that that, um that just was really a profound kind of moment Listening to Why not us? Yeah, Um, thank you for sharing that, and I'm wondering if you could, like, share with me your journey, You know, what's your journey so far? Well, I think I think I've gotta rewind a bit and go back to childhood. Um, because I was about four years old when some men exposed themselves to me. That was the first abuse I experienced

And then I was seven when my grandfather raped me. And I was 8 to 10 11 when an older lad abused me for a period of time. And I was 14 when I was held hostage on a beach and sexually abused and assaulted

And I was 15 when my mum's friend neighbour and a woman who was like my other mother raped me. Yeah, and all of that changed me. And I, um I also think being gay, I I was bullied mercilessly at school all the way through school, to the point that I mean, when I was seven, they had me under a child psychiatrist, and I was moved from one school to another, and but I didn't tell about my grandfather, and I didn't tell about what happened to me when I was younger

I just remember these things, and you don't tell because you're told not to tell. And so not telling what was going on with me and not telling I I had to make myself safe. And I made myself so safe by excluding myself from school by, um, walking out of school and going home by, uh, sticking things in my ears to get ear infections

And, um uh, being off school by Oh, God. I mean, I didn't believe I was ill. I just faked illness

When I was younger to be off school, I did a lot. I even had surgery on my jaw when I didn't need it because I was faking illness about that. And it was all very successful at keeping me safe

Because every day I went to school, I felt like I was gonna die. And then my life turned around dramatically. I came out at 16, wasn't thrown out of home, but left home very quickly because it was horrible

Um moved around the country a bit. Doing temporary work worked very hard. Uh, money paid my way

Mhm. Um eventually moved home to go back to college and within two weeks moved out, but was lodging with older gay men who kind of had an agenda. And it It was another abusive experience, really

Not the same as the sexual abuse I'd received as a child. But it was an abusive situation. Power imbalance

And then I met a man who was at the time, the man of my dreams and just, um I had a very intense relationship with him. He was I didn't I I lied about my childhood team. I lied about my whole childhood team because it was too painful and it just became an and Nick and, um and I was really happy for the first time in my life

Um, and around that time or even before that time, I'd started passing white urine and we didn't know what it I didn't know what it was. And I was scared. And I didn't tell the doctor I didn't tell anybody, But when I was living with Nick, Nick was a boat builder

Really gorgeous man. He was 11 years older than me. I was 19

He was 30 and we had a great life. We sailed, we climbed mountains. He wasn't into the gay scene, so I would go off clubbing and pubbing and leave him at home and, um, just everything that 21 year olds do

But I started getting back pain. We didn't know what it was. And eventually I turned up at the doctor's with a sample of this urine and they went, Oh, my God! After the clap clinic review, they just made assumptions cos it was a gay man, and even the sexual health clinic made assumptions

And it was several months later, lots of antibiotics and a lot of damage to my relationship that, um they said, Oh, no, this is renal colic. You've got kidney stones, but you got loads of them and your urine's turned white because there's so much calcium in it. And, um But by then, I think Nick had moved on and our relationship soured, and it kind of struggled on for another few years

But it was just awful. And when we split up, I was faced with facing me as a person again and facing all of my abuse and facing it all on my own. And I basically with the amount of pain I was in and with what was going on psychologically, I lost my job

I lost my home. I lost everything and I landed up in a OK house in Bogner where I didn't want to be. And I became very depressed

Uh, but the doctors were giving me peedin, and, um, whenever I took peedin it didn't just take the pain away. It made me feel better. And so for about two years, I didn't take it every day, but I would go through bouts of I'd get a bit of pain, I'd take the peedin, the pain would begin to subside, and I'd kind of go, I can't face my life so I'd take some more peedin

I'd get horribly constipated on it because it's an opiate. And eventually I'd stop taking it and face my life again. And then the cycle would repeat again a week later or a few days later, or two weeks later

Um, I felt like my life was over. I felt like, uh, I'd lost all my hopes and dreams. I'd lost everything

I had no future. And, um, I would go to bed at four. In the morning

I'd get up at 11. I wouldn't get dressed till three or four in the afternoon. I didn't feel like part of society

I'd eat one meal every day or one meal every other day. Sometimes I'd go to the supermarket at two. In the morning, cos I couldn't cope with people, I'd become a bit agoraphobic

I was very anxious about, Um uh, my my PTSD was really showing them, but I didn't know what it was where I'd get out of the car in the dark and I'd walk to my front door and on the way to my front door, I'd feel like I was being chased and I was about to be attacked, and I'd get the keys in the door, terrified. I was being jumped. I'd get the door open, thinking people are gonna pile in behind me and attack me

I'd be closing the door expecting a hand to come round and grab me. And then when I got in the house, I had to shut all the curtains because I felt like people were watching me. Um, or even the most extreme is I felt like someone was about to shoot me through the glass

Very unhappy times. And I, um, became a volunteer for the Samaritans, and I was actually really suicidal, but I wouldn't tell anyone that, Um but actually, helping other people really helped me. And, um, I was a volunteer there for eight years, and in 2004, I Oh, and I was very sexual

I kind of use sex as a painkiller. So I was kind of, like meeting loads of people and having lots of sex and, you know, some days meeting two or three people off the Internet and coming to the house. And so I used, in a way as a pain belief

It was kind of a distraction. Um, but it was very dysfunctional, and I didn't feel loved, and I didn't feel careful, And I didn't feel understood or believed by the doctors. And, um, I found the Edward Carpenter community during that time

And that saved my life. It was a community of men who support each other, run workshops and support groups and made a big difference in my life. It's where I got the nickname Fuzzy

Not because I'm hairy, but because of the pain meds. Um, in 2004, I was, uh, yeah, in a hospital in Bogner. And I saw a leaflet for the expert patient programme

And I, um it's a self management programme delivered by people living with conditions. And I, um, became a volunteer tutor for the expert patient programme after doing the course. And it was around that time that I met Andy, my partner

Um, and, uh uh, he wasn't out. We were We both needed some care and understanding. Um, And during that summer, he fell in love with me, and he came out

Um, and he turned 47 years older than me. I was 33 and that was the beginning of life changing. But it was also the beginning of another pain condition

Um, in my feet. So I get up out of bed and my feet would be painful to walk on. Oh, God

Run out of run out of tests as to what it is. And, you know, rheumatoid arthritis. No arthritis

Yes, but but shouldn't cause that much pain. Long story short. You know, now, all these years on, we're pretty sure it's an syndrome

And I have, um, a connective tissue disorder that affects my tendons and cause my tendons to be very painful and swell up and get inflamed Um, and Andy and I didn't live together for four years. But during that four years I volunteered for Expert Patient Programme. And it was during that time I got involved in health care stuff like the Royal College of GPS and the Strategic Health Authority Patient Group, and a bit a bit a bit about research and research in in into healthcare, which is what I do now and get paid a paid for for doing public involvement

Um, but it's very difficult to separate my pain conditions because I've got the renal pain and I've got the foot pain or joint pain all over. Um, the renal problem has caused me to develop osteoporosis because I pee out all my calcium and, um, that's causing problems with my spine. So I now have neuropathic pain in my feet and my legs caused by a sponge thesis in my spine and just degenerative back and neck problems really, really sort of crumbling spine and neck

Um, but also, around that time, I had some dental surgery, and they damaged it over my face. So I have, um, all a facial migraine in my face, which gives me Rovian toothache and just a constant ache in my jaw. I don't get shooting pain, but I will just get a tooth that is absolutely on fire

Or it will be a whole set of teeth that are sore and, yeah, spend a fortune going to the dentist to be checked out. But actually, it's just a the nerve damage. So I've got the nerve damage that causes all facial migraine

It makes me feel drunk and dizzy, and I don't really get the headache, but I just get everything else with a migraine. Plus the pain got the foot pain, the tendon pain, the renal pain and then linked to the danos. I've got rib pain and chest pain, which isn't great, but then gets worse when I developed a heart condition and arrhythmia and when I feel my heart's not beating right and then I have chest pain as well

It's kind of like repeated trips to A&E. Um, so, yeah, in my thirties, it was the tendon and the foot pain and the the or facial migraine. In my forties, I developed a heart condition

I lost some of my hearing or was diagnosed with hearing loss at that time subway and hearing aids. Um, uh, I I've lost I kind of lost count of all the hospital consultants because it's sort of and the pain that interacts with everything. So I've got sleep apnea, and so if I sleep well, my pain is better

But if I sleep poorly, my pain is worse. Um, And then, uh, recently, because of the osteoporosis, they put me on some medication that's caused me to develop something called Hypokalemia. So I get low potassium

So I have to take potassium supplements all the time and have regular blood tests, because when my potassium gets low, it affects my heart, and it makes all my arms and legs ache, and it makes me feel really horrible. So it's just juggling all of this and then throwing asthma that I was diagnosed with in my forties. And, um and then could you try? Oh, shut up

And then, uh, then life is going pretty OK, But four years ago, I mean, with all of this in mind, um, about 56 years ago, I started using a wheelchair when I travelled for work because sanding and getting on and off trains was just too much for me, and that's helped a lot. And it's also helped in the visibility of people actually realising something's wrong. Um, but I have a lot of guilt, and I have a lot of, um, OK, confusion and anxiety about, you know, psychologically

Am I I I Is there something wrong with me because I'm using a wheelchair and I can walk around the house. But actually, if I walk down the street and walk too far, my tenders will start hurting. If I go much further, my feet swell up

But it's that whole thing of of justifying it in my own head and kind of going Am I going back to my childhood? And, you know, um but yeah, four years ago, I was away with work, and I was raped in a hotel in Manchester. I know was absolutely devastating. And I became I was just numb

Um, and that did me no favours for my pain and my body, everything. And then when the lockdown came along, that did even worse because I'd been used to travelling around the country and being quite physically active, even though I was using the chair and suddenly it all stopped. And suddenly I was at home, and suddenly it was just on my computer and suddenly crap

Um And to add to this trauma, the police officer working on the case, um, in Sussex was allegedly a straight married man with kids, but he actually groomed me and then contacted me on grinder and said he wanted a relationship with me and, um, for a while on grin, he wouldn't tell me who he was. I didn't know who I was talking to, but he kept on saying he knew me and he knew all this stuff about me. He knew everything that I've told you today

But I went for a period of real anxiety, of feeling like he's gonna want to break in and kill me. He knows where I live. I can't fight back because I reported him and he lost his job and he lost everything

And it's taken me a hell of a long time to come to terms with that. That wasn't because of me and my doing. That was because of what he did

Yeah, So there's been a hell of a lot of stress in the last few years. and a lot of trauma. And I feel quite good that I've come through it this far

Um, and I manage. And if I have a day where I kind of don't want to be here anymore, Yeah, it's not a case of I'm actually actively suicidal, but I'm just kind of like, yeah, I was if I was to die in this moment, it's OK. Um then I forgive myself, and I kind of go, actually, that's just a bad day

Um oh, and I've I've missed out a big chunk of, um, you know, I landed up chairing the patient group at the Royal College of GPS a few years ago. I landed up chair, setting up and chairing the patient group British Pain Society. I've been chair of pain UK for 10 years

I've just stepped down as and become a trustee again, or or or gone back to being a trustee. So I've done a lot in this time. I've I you know, I created a lot and, um, and the thing that gets me through the most at the moment is through

The communities I'm involved in is, um, twice a week, I run what's called a heart circle, where we gather on Zoom and we've done this since the beginning of the pandemic. It's a group of gay men who gather on Zoom and just like we're talking now, it's just an opportunity to talk and share and be without response, without question, without reaction. It's just being heard by each other

And, um, I found that incredibly powerful and cathartic. So it's not all bad, But you've got it once and all today. That's the whole lot

Well, I was, Um, certainly, um, I think you should be very proud of yourself how much you've managed to do despite some really difficult moments in your life. Um, and there were things that just struck me throughout all of your experiences. Um, but I wanted to, like, go back to, like, one particular thing you said about being believed

So when you were getting help being believed, um, do you feel like so I clearly you'll be particular? Um, you probably know so much about pain and how to to get the right support. Are you able to kind of get the right support? Are you not always? Not always. Today I'm terrified that this pain is gonna get worse that I'm gonna need an ambulance and there won't be one

Um, you know, I've had times when the pain has escalated to the point where I'm screaming and I can't do anything but lay and scream because, OK, uh, yeah, I just paralysed with it. Um, they I I mean, at the moment, I've got one of the things I've developed a few years ago is called hypogonadism. So I stopped making testosterone and my testicles died

And, uh, so I put testosterone gel on each day, but that's caused my testicles to die and shrivel. And as they shrivel, they get painful. And I've got that at the moment, I'm waiting to have those taken off

And there's this whole dilemma between my masculinity and my feeling as being a man is all very tied up with my testicles and that, actually, what will I be? I might have replacement ones, but what will I be if I don't have my testicles? Um, so but at the same time, the pain is so bad that it's kind of like, please, just take them away. You know, I was talking to my GP this morning. I was just like, You know, what? If I go private and he said, Well, you can see a consultant you know, in outpatients privately, and that won't cost a few 100

But if you're talking about paying for the surgery privately, I have no idea what that will cost. And, um, and it is kind of big surgery. It's not

It's not as easy as just cut the bag and take it out. They actually go through your groyne and, um so there's a lot going on. There's a lot going on, and but I do

I just work on one day at a time, and I just focused on. It's a bit like our email exchanges I've got. I've got over 100 emails in my inbox that I need to do something with

They're emails that I've read. So I have acknowledged them, as in that I've read them, but it's almost like too much light comes on. I can't deal with that now and then something feels important or something feels urgent

So then I deal with that and there's only so much energy to deal with those things. So many things in the day, and then I switch off and shut down and everybody can just wait. Um and it's kind of how I get through life

It's kind of you know what? What fire do I need to put out now? What do I need to do? So, you know, after we talk, I know I need to go and eat something, because I need to take some more potassium. Um, uh, do I feel like eating? No, I actually I mean, I'm waiting for a referral to the eating disorder clinic because I'm definitely I I have a problem with food. I'm I'm quite overweight

Um, and I and it's partly to with the pain I go through days where I can't get motivated to get up and get food, and I don't feel hungry. And then suddenly I will feel low blood sugar, and then I'm hungry, and then I've got to eat, and then I can eat too much, or I certainly have no portion control in the evening. I can eat, eat, eat the portions for two or three people in the evening meal

But, um, the rest of the day I struggle, so it's complex and you've probably heard stories like mine. I'm I'm sure, because when I listen to people living with pain, the stories are always. There's often similarities

There's often like they're losing the job. They're losing the relationship people not understanding feeling alone, feeling isolated, not feeling. Listened to not feeling believed, not feeling understood, not feeling cared for

You know, it just kind of like warps it up. And I did some work with, um, a charity called Groundswell on Homelessness and and Pain. And we did a survey, and it's called Out of pain

And a phenomenal number of people living on the streets of London are there because of their pain. And they are living in pain and self medicate with alcohol and drugs because they can't get treatment. So yeah, it's such a lot

And and the other thing is, going to hospital is such a lottery. You never know whether you're gonna get a doctor who's gonna be lovely or a doctor who's just gonna be functionary and the functionary ones are functionary, all right, but they don't understand you and they don't get you and you don't feel cared for. And, yeah, what impact does that have on your well-being

Like when you people that don't get you and don't care. Um, I've learned. I've learned, you know, I live with pain now for over 30 years, I've learned to cut them out

If somebody's not supportive, if somebody is not. If somebody makes a joke about my pain, that's it. They're done

If somebody thinks that's OK, Um, I won't have that. Anyone who takes the piss is toast. Um, I think I do understand that it's hard to keep showing support

Yeah, it's hard to believe that pain can go on and on and on and continue for years. It it's it's hard to believe that one day you can be good and do X y Z and another day you can't get out of bed. Um, so I do get it from the other side, but from my side, I just need supportive people around me

I haven't got time or energy for the that. So, um, like you've certainly taken me on like a journey and shared your history. And and so, like, I'm wondering why you got involved in the project

So I think telling stories is really important, you know, at the Royal College of GPS. When I landed up as chair of the group and on council, all I could do was tell stories. And in fact, my story was nowhere near as powerful as telling someone else's story

Um, so I would often tell stories of people I met along the way. And then when I got involved in Expectation programme every six weeks, I had 16 different new stories to learn about 16 different people to learn about and to learn things from and to help and, um, and that that carried with me through the Royal College of GPS through the British Pain Society through pain UK I mean at pain. UK a week doesn't go by without receiving a really heart wrenching email with a story about someone's pain and where they're at

And, um, I think I've become quite good at learning how to respond to people about that and to know how to empathise and to talk about the loneliness and the isolation and the depression and the suicidal thoughts and, uh, the the lack of sleep sometimes and the problems eating and the problems functioning and the problems with relationships and, you know, pay makes you grumpy. You know, I can be a really difficult person. At times

I can be really high maintenance, but I also know I can be lovely to be around. So it's kind of that balance between I I guess I've got to know myself very well. Can I ask you, like, do you have, like so what needs to change in the world for people living with pain to make it less difficult, unfriendly, uncaring? You know all those things, I think, I think, First of all, um, the first thing is that there's a huge number of people who don't recognise that they're living with pain

So there's 28 million people thereabouts, living with pain in the UK eight billion of those people living with moderate to severe pain that severely impacts their lives. And I think some of the 20 million need to recognise they live with pain, too, and that they're one of the 28 million. That's the first thing, and the next is I mean, there's so much to do because there's there's the whole thing about public education and public information about, um, learning about pain, learning how to support people living with pain

You know, when we talk about cancer, Actually, we don't even do cancer. Very well. We know about cancer very much, but when someone gets cancer, they often feel very isolated because all their friends disappear because they don't know what to say

And they don't want to say anything that will upset anyone. So they they leave them alone. They think Well, whilst they're having treatment, they won't want company

They won't want to talk. Um, and I think I think you gotta tackle things like that first. And then pain can follow in people really understanding and making the adaptations for their friends and family around who live with pain

Um, I think the the the headings listen, believe, understand and care really fit massively. And I and those are headings that have come up through years of stuff that I've done. Um, And when I say them to people, they resonate every time

So listen, believe, understand and care. And if it is, uh, in a clinical setting, it's listen and believe diagnosed. And it's not diagnosing, um, often what's causing the pain

Sometimes it's just diagnosing that there is pain And what sort of pain it is. And acknowledging that and showing that you care and showing that you want to help someone and treating them. So it's not good enough for a doctor or a nurse to say, um, what you know, What's your pain score at six

Oh, I'll give you some paracetamol. The response should be, Oh, gosh, you're in a lot of pain. I'm really sorry

They should actually show they bloody well care. They need to say, I'm sorry, you're in pain. I'm sorry about that

That's awful. That must be very uncomfortable. That must be very difficult

They need to show some empathy. So it shows some humanity to people living with pain and then offer the treatment and say, Well, let's start with paracetamol But there's other things we can try. If that doesn't work, they never do that

They never do that. And that's in a medical setting. And you'd think in a medical setting, you would they get it, but they don't even in pain clinics, they don't

I had an experience years ago in my twenties where a consultant came up with you with a needle that long I was in AC T scanner and he puts the needle in through my stomach, um, the top of my stomach and guides it all the way to my kidneys to inject some stuff into my kidneys to numb them. And we go through this procedure and part part way through. I can't cope

And so they sedate me and, uh, they ca they carry out the procedure. And when I come out, they say, Are you? He just walks into the wall. He doesn't even announce himself

He just wafts in says, Are you in pain? Mr Tutor? And I said yes. He said, Well, it didn't work then And he turned around and left, and I just burst into tears. And that was a pain consultant

I was a pain consultant. I felt like an experiment that had gone wrong that had disappointed the doctor. I felt like the failure, whereas he was the failure and not that the treatment failed

I don't blame him for that. Treatment sometimes don't work, but he failed to care. We fail to show any humanity, so we need to treat that we need to change that

And then we need to change. Um, the workplace because too many people develop pain, struggle on their productivity goes down, they get into trouble at work or they have time off work or they have too much time off work, and then they lose their jobs. And actually, what needs to be happen is when people develop pain, it needs to be recognised

They're in pain. There needs to be occupational therapy at work. There needs to be, um there needs to be a a frank discussion about, you know, is this job suitable for you still or not? But organisations should want to keep people for their expertise and and and and retain them and find stuff for them to do that they can do and maybe have that difficult conversation about

Maybe you can't work five days a week. Maybe you should work three. Or maybe you should work 10 till three each day or, you know, it's that whole thing of we do all these adaptations for other people with other conditions, but we don't do it for pain

Um, so you know, you've got the workplace, you've got the home life you've got people in general, I also think that at the moment it's ridiculous that if I want to go to a pain clinic, I've got to travel 15 miles in every direction to get there. And in fact, there's nothing to stop the components of a pain clinic being in the local community. Imagine if the physiotherapist works at the local leisure centre and then a twice a week class for movement for people living with pain

Imagine if that physiotherapist, then just I board people and said, Actually, I need to see you 1 to 1. Yeah, let's book some sessions at the local GP surgery. Imagine if the occupational therapist actually went round to people's homes and workplaces and said, What do you need? Um, imagine if the psychologist worked in your local library and then a small support group in the corner of the library or in a cafe for people living with pain so they didn't feel isolated

And if that psychologist were to identify people that need more support and offer them 1 to 1 support in a GP surgery, imagine if the GP could pick up the phone to the pain consultant and say, Hey, Anthony's do not doing so well at the moment. I don't know what to do, what can we do? And so the consultant actually empowered the GP because it's the GP. I know the best

My GP knows me. My consultants don't know me. Not really

They see me once a year or twice a year. Um so I'd do that. I'd move all those services of the pain clinic into the community and make it really accessible because one of the things I hear about is even when people do finally get on a pain management course, and it's not always guaranteed, they will that it's like a sausage machine

They do the six weeks and get spat out the other end, and then it's There you go, kid. Are you on your own? Get on with it and it's like, No, we need more. Oh, sorry

You really got me on a soapbox. It's absolutely fine. I was just thinking, Oh, God, I've been there for six weeks Then now you're on your own, come out on a high, and then a year later, where are you? Yeah, absolutely

And we expect people with pain to get in their cars and drive or get on a bus or get on a train and go all the way to a major hospital, which isn't quite so bad if you're in a city and there's public transport. But if you're in a rural area or in a country town that doesn't have the hospital and the the big hospitals 20 miles away, it's just rubbish. Um, and even if you're in a city, it's not great

Yeah, uh, we got to normalise pain. Pain happens and pain is part of our lives. And, um and I think there is this thing about not medicalizing pain all the time looking at pain from the social aspect and the societal aspect and kind of going, Yeah, because the the the social model of of disability and the social model of pain should be around how you live with pain and how you manage it without medication or how you manage it

But actually, medication is only that much of the management. Um, so and I'm you know, I I I see opioids as a necessary evil. You know, I because of my past, I don't want to take an opioid any day of the week

If I can help it because I don't want to be reminded of that time in my twenties. I don't want to feel out of control. I don't want to feel fuzzy, but at the same time, if the pain is that bad, I've got to take it

So it's that whole thing. And I think a lot of people with pain have been labelled as addicts when actually, what they needed was a doctor to say this is an opioid. It's all right for a day

It's all right to get you out of trouble. But don't take it for more than a day and tell me whenever you take it, keep a little diarrhoea when you take an opioid so that we don't develop problems. Um, so, yeah, you've shared a lot with me and you've taken me certainly on a a really important journey

And so I'm wondering, like if you so I don't have any more questions for you. But I'm wondering, do you have anything that for me? Like any questions for me or, um, I think the one that we've not really covered is the impact it's had on my partner. Um, are you happy to come? Are you happy to share that? Yeah

I mean, I mean, having been together 19 years, lots of things have happened in our relationship that happen in all relationships, like, I don't know, sex life, drying up, separate bedrooms, but still very much in love. Still very much together, Um, always having an open relationship. But I think I think for Andy, and he's really had to

I had an interview for Pip a few years ago, and at that interview he was asked how my conditions affected him, and he said, Well, everything we do is around what Anthony can do and what he can't do. And, um, I've never forgotten that, you know, it's really impacted him. Um, And I think, uh, I I suppose my question is, will you be interviewing any partners? Um, because I think that would that would reveal a whole picture again

Yeah. So, uh, the the yes. Why not? Like, um, we we are gonna have some open spaces, some story sharing spaces where we can invite we're inviting people in

Um, most definitely. I've heard, uh, throughout the interviews that I've done the impact on loved ones and something that I'll definitely feed back to, uh Jian and and Tim that maybe I'll be coming to you for some. I mean, he's a shy introvert

It may take me throwing, you know, um, bowls of hot, flaming tar at him to get him to do it. But, uh, I I can ask if if it's something you would like to do. Um, yeah, I How I I I suppose I I you know, the human in me is saying, How are you feeling? Because it's a lot to absorb

There's a lot of trauma in my story, and that can be very triggering for people It can be. How are you? I feel like, really privileged to be able to be in a space with somebody that's so open. Um, there have been moments where I thought, Well, that really sounds like my life

Um, I am also mindful that there are, like, different types of pain. So there's the physical stuff. There's the emotional or psychological whatever you however you, uh, to find it

But throughout our conversation, a sense of just being really present and needing to listen, um, and what a privilege to listen to some story. Thank you. Thank you

And, um like I've I really struggle, like sometimes to know the right word. Like, um, some people don't like the word brave or some people. But the feeling that I get is, um, how liberating to be able to express your story in in that that way

Um, and what a privilege and honour to be able to capture that story. And then I was thinking when we were going, going through you, sharing a story, How other people will, um, learn so much from your story? Yeah, that's why I share it. That's why I share it

I share it. I share it because in a hope that it will help that someone hearing it will, will, Will will suddenly go. Oh, I feel alone too

Oh, yeah. Just because you've got pain doesn't mean you can't develop another pain. I'm not so weird, you know, it's that whole thing of, um yeah, because there are times when I feel like my body is a car crash

It's like, Why is my body not like everybody else is, um so sometimes being around one of the things I found, um, since the rape was I got involved with survivors. UK and I've found soul food meeting and being with other men who are survivors. I'm realising that all the things that I thought were weird about me are not

They're just a normal part of being a survivor, just like just like, um, you know, when I was raped, you know, I'd met a guy off of grinder, and, um, and a friend of mine in the States rang me up and just said and he was lovely And he said, Look, you're probably beating yourself up because you met someone off an app, but what you were doing was nothing that's not normal for gay men. And that was really helpful, really, really helpful. So sometimes that normalising and meeting other people and hearing other people's stories

And I I try not to, you know, in the groups that I put together, I try not to share my story in full because it's too much. It's too long. And so it's a lovely it's lovely to actually have a space to share it in its entirety

Um, uh, but I love listening to other people's stories, too, so I will be interested in, uh, hearing other people's stories, too. So part of our hope is, um So, uh, paper media, uh, which is the organisation I work for? We capture stories with the hopes that the stories will be the catalyst or the reason for change. We, um, invite people in

So those who shared their stories to help us understand. I love the clock. I love clock

Help us to understand. Like what? The key meanings, messages and themes is. We call it sense making, which is a bit of a But we get, uh, to be in space and and listen to other people's stories and just like me, like being really, really honest with you

Um, I would have lived with pain for a long time into this project. I have never been in space. I've been on the pain management course, other people

And you think, Oh, gosh, that person is validating my thoughts and experience, which is very powerful, isn't it? Um, Massively. Massively. Um, what was I gonna say? Oh, yeah

So I'm still involved in pay UK. We've got, uh, 1300 individual members on the mailing list. Are you still looking for people to interview? Would you like to advertise the opportunity on pay UK s Facebook page

Or we can put a email out to our members if you wish to have people come forward to interview. This is great. So I will go back and speak with Gillian and the research team to say that there's been this, um, offer

So what we're planning on doing next is we are gonna do some sense making where we look at other people's stories. And you if you wanted to, um, use your story within that, and then we're going to do a thing called a story sharing session where might invite people that have shared their story to work alongside me to capture other people's stories, the details. But I will definitely email you, and and this is probably like, um, go dust for the project

Really kind. And, um, great to have that connection. Um, so I'll be in touch about that, uh, and anything that you have that you wanted to ask me, or I don't really I mean, it's lovely to meet you, and, um, I hope our paths cross in the many different sort of, um, interconnections that we have in our life

You know, Uh, So you know, you you know of loving men. And we talked about the fairies, and we've talked about. I've I've talked about Edward Carpenter community, and it's that whole thing

So you know, these communities are out there, and there's also pain in UK. And, you know, So, um, yeah, I I hope, uh, no, it's good to meet you too. What I'm gonna do is, if it's OK, I'll stop the recording there and let me


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