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The testimonies below are anonymised and in some cases have been edited for clarity – but represent a summary of some of our participants’ experiences.
Describe the journey to receiving the diagnosis of Chronic Pain?
Participant 1: In my twenties I was having pain, and the GP I saw was really dismissive. I had a blood test that signified something, so I got a long referral letter - but that included a lot of information around social problems I had been through. I think all it needed to say was this is a patient with intermittent pain.
The consultant was great though, he said “I’m not treating a referral letter, I'm treating you”. I got a diagnosis, but it didn’t mean anything apart for recognition.
Eventually the pain changed, and I got referred back to a consultant who dismissed me again. I was really struggling, and I had to work out for myself I had fibromyalgia. When I was finally diagnosed by another consultant he said “this is what you’ve got” and that was it. I asked is there anything more I can do and he said, “not really, speak to your GP”... The PEACS programme is the first thing I have been offered that I haven’t had to ask for.
Participant 2: It’s been a long journey. In 2020, they sent me to hospital for pain management from then that’s when they started to try. Whereas before, I was going around in a circle, taking pain killers, using patches, doing everything, but nothing was helping. Then on top of that, it is coming up to two years when they diagnosed me with cervical spine — that one is the worst one. So, the journey is still going on, I’ve got to face it.
How has the PEACS programme and spaces like Art4Space allowed you to form new friendships and connections?
Participant 3: My first accident was on a bus, the bus did an emergency stop and I went from the back seat right to where the driver was. I injured my neck and my back and that’s the chronic pain started. It is traumatic. You constantly have to explain your pain to people.
We have become a family. We support each other, uplift each other, comfort each other, and we look forward to the Art4Space sessions because we can focus on something else aside from our pain.
Participant 2: PEACS and Art4Space really helped me. I went to church on Sunday and came home with £35 from selling the jewellery I had made with Art4space. I learned this here and now I’m selling, I’m making money. So it’s really helped me.
It gets me out the house. It’s nice to come out and meet other people. Like they said we are a family. You don’t worry as much about the pain and you get to do things you haven’t done in years.
Why do you feel programmes like PEACS are important, especially for people from global majority communities?
Participant 3: Because it will stop you from being isolated. Most of us have been isolated with our pain because of family, work, and people not understanding what we’re going through.
For me nobody sees my pain, they just see how I look. They expect me to be crying, and there’s been days where it’s been like that, but you have to make a decision.
Sometimes it takes too much energy so you have to learn to live with chronic pain and put things in place. Things like monthly massages to take the knots away. You have to put things in place to assist with the pain so you can manage.
Participant 1: It’s nice to be with people who just get it. You don’t have to explain they can anticipate what you need, and when you ask for help it’s no problem, they are happy to do that.
Participant 3: People don’t understand, that’s why I always say to professionals and people who don’t have chronic pain, have they had a toothache? Because everyone’s had a toothache, imagine having that over your whole body and living with that. Because when you have a toothache you want the dentist now, you want the medication now. That’s how we live!
Participant 5: I didn’t realise I had chronic pain, I needed a hip replacement and I thought you’re going to be in pain, that’s how it supposed to be. They kept saying chronic pain and I didn’t like the idea of coming somewhere and talking about what’s happened because I always try to put it to one side.
I’m 5’7 and I used to use two crutches just to get down the road and back again. The amount of times I got bumped into. I felt invisible so I stopped going out.
But then I was called out of the blue and told to go on the PEACS programme, which I did and then they sent me information about Art4Space, and I was so pleased. At first, I was thinking I don’t want to sit and talk about what’s going on with me and chronic pain, I don’t like the idea of that. But I am so pleased I came because I think I was isolating myself. In all my life, if it's not one thing it's another, and I didn’t realise that I was always in pain somewhere along the line.
I think programmes like PEACS, if we have more of them, they will really help. It’s not about having everyone say “I’ve got this, I’ve got that, I’m in pain” - it's about getting you out and talking to other people. Yes, we talk about our condition but on the whole, we do things together and we’re a lovely group.
Participant 1: For me meeting people was more valuable than the education I received through the programme. Some of the education wasn’t new to me, although can be helpful, but for me the most valuable thing was meeting other people in similar situations.
Participant 3: And it boosts your mental health
Participant 5: I was afraid I of not feeling well enough to come in. How would that effect the group, would they think I’m taking advantage or something like that?
Participant 1: Not at all! We get it. There are days when you can't get up and get to places on time. Chronic pain is unpredictable, whether you’ve got osteoarthritis, or you’re dealing with conditions like fibromyalgia, it is so varied.
Participant 2: At first, I thought I complain too much and I make everything about me. I didn’t think people would believe what I was going through. I was lonely. But coming to Art4Space and going to the library to catch up, it's made such a difference. Now I know somebody else is there for me, who understands what I’m going through. We understand each other and we are there for each other,.
How could we improve support for people living with Chronic Pain?
Participant 3: I think appointments should have more time to understand what we are going through. Sometimes you just need someone to listen to what you’re saying. That’s what the PEACS project is exemplary with. They listen, and a lot of us haven’t had people listen to us or believe us because they just assume pain looks a particular way. And what does pain look like? That’s what they need to keep on asking.
Participant 1: We want to be believed and be taken seriously.
Participant 3: There is nothing worse than to be in pain and somebody doesn’t believe you. That’s why I use the toothache example, imagine you’re going to the dentist and they’re saying you’re not in pain. It’s dismissive, and it’s an emotional thing to deal with because no one is listening to you while you’re going through severe pain.
Why do people not believe us when we say we are in pain. If you are asthmatic and you say my chest is hurting or I'm not breathing properly, people are not going to be dismissive.
But with pain, it’s a different thing. They say we’re moaning too much, but when you’re in pain what are you supposed to do? Sometimes you can't think about anything else, it takes over your life
Participant 5: My doctor has said to me before “oh you’re limping” and I’ve said “my hips been hurting”“ so he’ll say “didn’t I refer you before?” “and has no one got back to you?” “I will check on that right now”. That’s what he’s like.
What advice would you give to someone going through a similar experience?
Participant 3: I would advise them to find people who are going through the same or a similar experience, so they no longer have to go it alone.
Participant 1: My advice is to be proactive in finding out what support is available. Don’t be afraid to be assertive to get access to it. Before coming here, I never thought of applying for a Personal Independence Payment. It was all the encouragement, it has made a real difference for me and I wouldn’t have done any of it without the chronic pain family I found through PEACS.
Participant 5: This was the first place I came to and once I tried Art4Space I started to think more about what else I could try. I came on a Tuesday and that same Thursday I’d made a lot of new contacts, now in three different groups and I wasn't in anything before.
Participant 3: I’m so passionate about the PEACS project. I would love for it to be rolled out for children and young people because there will be children suffering with no one to listen to them..
Participant 2: I tell people who going through chronic pain, talk to your doctor. I’ve done pain management courses at St Thomas’ Hospital. I’ve done everything I can to help me manage my pain.
How will you continue to work towards prioritising your quality of life while living with Chronic Pain?
Participant 3: For me self-care is very important, getting fresh air, having my massage, doing water aerobics, you don't feel the pain as much in the water. Just doing things for me benefits my mental health. Also spending time with the community and connecting with others.
Participant 2: Crafting
Participant 7: Exercise
Participant 3: Stretching.
Participant 2: Healthy eating
Participant 4: Something that's been very helpful is the pain family we have found through PEACS. People share different things that they've found on the internet, helpful foods, places. You can't have enough of those things. Doctors can’t supply you with all of that, but we have created a speace to share this information and to help each other.
