PEACS case studies

Tell me about yourself 

My name is Mina, I am unemployed because of my health issues, I have lower back pain as well as carpal tunnel, anxiety, and depression. Living with chronic pain is not easy. 

Can you describe the journey to receiving your diagnosis 

The pain in my lower back starts from my right side, from my legs and my back. When I walk, I feel strange, like someone is pushing something sharp in my back and preventing me from walking.  

All the time I’m in pain, even if I’m laying down, walking, eating, sleeping, all the time I’m in pain.  

How has living with chronic pain impacted your life? 

It impacts my life a lot. Now I feel like my life is hard, I have no goals, nothing, I cannot work, I cannot walk, I cannot do even basic daily household activities.  

When I think too much about this, I get depression and anxiety. When I think too much it gets worse and I get breathing issues. I cannot breathe properly when I think too much about the pain. 

What are some of the biggest challenges that you face now because of chronic pain? 

The biggest challenge is I don’t have a normal life like other people, I cannot work, I am unemployed because of this pain.  

I cannot go out, no matter how much I want to go outside, go to gatherings, or join my friends. Sometimes when my friends ask to go to the park or a gathering, I excuse myself, I say “sorry I can’t because I have pain, if I join you I’m sure you will not enjoy your picnic because you will have to sit with me and I will waste your time, you should go”.  

I am not enjoying life, I am not living like a normal person. 

What is something you want others to know about living with chronic pain? 

At the chronic pain sessions (hosted with Art4Space) I heard that people who have chronic pain sometimes can push their body too much. I know I have done this before. When we are managing a serious health condition we should not push ourselves too hard. When I am doing daily household activities, sometimes I get very serious back pain but I continue to do the washing, cleaning, and cooking. Pushing ourselves too hard causes the pain to become more serious.  

We need to do things slowly, step by step. It is not possible for patients like us to do work like normal people who don’t have chronic pain. Our condition is totally different. I’m not saying that we can’t, I’m not discouraging other people, but I’m saying we should look after ourselves and we should be careful about our health condition.  

What would like to tell your clinicians about living with chronic pain? 

I was taking physiotherapy sessions at the gym. I found those exercises very useful for my back but they stopped. I know in this country it is difficult — they don’t have enough space, they don’t have enough physiotherapist or health advisors, but they should try to solve these issues. It was so useful for me to go to the gym and do those exercises so that my treatment is complete.  

Why do you feel programmes like PEACS are important for people living with chronic pain? 

PEACS is very good — it’s important to have these sessions because most people are not aware of chronic pain.  

Before I attended the programme I didn’t know about chronic pain, and I was not aware of all of the ways you can manage it. When I joined the sessions, they were so useful! They especially helped me with my mental health. The health professionals gave us exercises, to help us deal with the pain. They were so useful. They brought people together and taught us a lot about chronic pain.  

The practical exercises during the sessions were especially useful. PEACS is giving awareness to the people who are living with chronic pain about their health condition, which is the best thing.

What advice would you give someone who is going through a similar experience? 

They should not give up. They should try and see their health professionals and do extracurricular exercises.

We must try our best and fight for ourselves to get better. I know that with some health conditions it’s not possible to get better. But we should try to do our daily activities, go outside, and spend our lives like other people. Nothing is impossible if we try and if we seek the help of professionals. 

Looking forward what are your hopes for the future? 

I hope I will be able to work because I’m suffering from unemployment. I also want to do my daily activities — cooking and cleaning. It’s okay that have pain sometimes, but all the time, it’s unacceptable to have pain all the time.  

I want to have a normal life like others, be able to do everything independently. Not rely on others to bring me my groceries, to cook for me, or clean for me. I know it’s not always possible to recover quickly, but my request is for the healthcare providers to keep working on improving the treatments that are available , and connecting  patients with the right services so they can get better sooner.  

Where do you find your strength, what keeps you going? 

My family. We give ourselves the right help for our bodies. Health advisors can give medications and check our health conditions. But if we don’t try ourselves, we will not recover. We are the ones who need to follow what the health advisors tell us will help us to recover. 

Tell us about you 

I’m a single mum of one. I’m an educated black women navigating the system. I was a ballerina with the Royal Academy of dance up until the age of 21 which I used to really enjoy. I’ve done so many jobs it’s unbelievable. That was before my baby was born - my baby is 23 now. 

Using your imagination, how would you describe chronic pain? 

It’s like waking up in the morning with your socks full of blood, like you’re walking on a plank of wood. Thumping, tingling, numbness now and again. You have to plan ahead all the time. You plan for any journey you might have that day, but you know when you get home you will be left with more pain and it’s not nice. 

Describe the journey to receiving the diagnosis of Chronic Pain? 

It was hard because I wasn’t listened to. Then to find out it was a lack of a few vitamins that could have saved my nerves, it was devastating! By that time most of my nerve endings had died. When I was told it was irreversible, and I’d be on medication for the rest for my life, I was shocked. By the time I was listened to, I got an apology but nothing in writing, the experience was so frustrating.  

The experience has been a learning curve for me. When I started working voluntary, I facilitated groups for people going into detox and I always stressed to them to make themselves heard. Just because you’re on a substance doesn’t mean you’re an idiot.  

A lot of people with diabetes for example are seen too late because they can’t express themselves, or they don’t have something like the PEACS programme team to help them. So, by the time they get their diagnosis it’s irreversible. I’ve learnt that if you want something, it’s for you to ask the doctor, it’s not for them to give it you. Ask if you need a scan or an X-ray, don’t wait for them to say it to you.  

How has living with Chronic Pain impacted your life? 

I feel inadequate, like I’ve been left behind. I love my best friends but when they’re doing things in their life I can’t help but think about what I should be doing at this time. I say to myself everyone gets their turn, it’s just not my turn yet, but it does make you feel like you’re left behind a little bit.  

It has impacted the way I walk too. My feet lean out of my slippers awkwardly and I have to lean when I walk.  

Then people see you’ve got a disability, but they don’t ask why. But you do feel like your image isn’t right.  

What would you want other people to know about living with Chronic Pain? 

People hate that word pity and I wouldn’t want pity. I want someone to say ‘how are you actually doing today?’, and ‘how is it going with the pain?’. I don’t get that much! Whether it’s that they forget because you look so jolly, because yes I can be jolly, I’m a very jolly person, but I am still in pain. That’s one of the things that really hurts. Other times I think people don’t want to mention it.  

It's a big deal for me because it is going to be with me for the rest of my life. I don’t know how I’ll feel in ten years —it’s not a disease where you have some expectancy that it may go away. This can’t be taken away, but if I keep thinking like that, I’ll be down every day. So it would mean a lot to be asked now and again, “how’s it going?”. 

Why do you feel programmes like PEACS are important, especially for people from ethnic minority communities? 

I think it’s very important. In the group there’s a vast majority of different cultures and whatever nation you are, it goes to show that we do speak out and we can talk about these things. I felt really proud to see men and women of our culture talk about it. It made me feel proud seeing them just the way they were. The attitude and kindness. They showed we can talk about it, it’s not a problem. It’s hard to get people of our nation to go to any kind of counselling, or groups, they tend to do it themselves with self-care but that doesn’t work all the time.  

What would you like to tell a clinician about living with chronic pain?       

I think it’s important for them to know the medication only takes away the pain temporarily. If there is more help we want to know. Give us the option to say if we want to try something else. Just don’t say it’s permanent. I’m sure there are more things we can do, we just don’t know.  

That’s why I’m going to get my nerves tested again. Even a little insight can give us a direction to take. If it doesn’t work, it doesn’t work. Imagine someone saying that to you, “you can’t get rid of that pain”, we want more options. 

What are your hopes for the future? 

My hopes for the future right now at my age, is to be in a job that I enjoy and that suits me. Not something that make the pain worse. Something that is rewarding for others and for myself. I like to help people.  

What brings you joy? 

The children in my family bring me joy. It’s the best joy you can get when you’re feeling sad; I spend time with the children in my family and it makes a big difference. I love music as well. 

Where do you find your strength? 

I’ve found it from my higher power and I have also found strength through being a mother for my child. You can’t help others if you don’t look after yourself. So, every day I have to think I’m here, I’ve got one daughter, and I can do this.  

Tell me about yourself? 

I grew up in a Nigerian household and identify as being Nigerian, Yoruba. I’ve been raised in Lambeth for most of my life. 

Now I work in mental health, and I have a passion for charity work. I am also passionate about equality — especially anti-racism. I've always enjoyed movement and exercise, so it's been challenging coming to terms with chronic pain.  

What was it like being diagnosed with Chronic Pain? 

I think I’ve always lived with an element of chronic pain having scoliosis, I've been aware of that pain since I was young. But it was something I learned to cope with, when the pain was severe or when I was in spasm. I used medication, muscle relaxants, and pain killers to get through intense periods of pain, but most of the time the pain was manageable because I was staying active.  

Over the years I managed chronic pain with osteopathy, physiotherapy, and acupuncture - but during lockdown I became less active, so health issues became more apparent - the suppressed vertebra in my neck, and the osteoarthritis in my shoulder and my knee. It started to cause me more problems, so I had more tests and my diagnosis was confirmed.  

From then there was more of an outward recognition of my condition and the pain. I always wanted to manage the pain myself, so, it has been a journey of identifying and accepting the label of chronic pain - that's been a major transition for me.  

Rather than me thinking I've just got aches and pains now there’s a diagnosis. That label of osteoarthritis - which came as a shock - was one I had to come to terms with. It aligns with my experience, and it has allowed me to be more understanding and compassionate with myself. Now that I have an official diagnosis I can talk about it more. Whereas before I wouldn't have talked about it much or really acknowledged it, I would have just continued to get treatment and continued exercising to look after it myself.  

How would you describe chronic pain?   

It's persistent but the intensity can vary. At times, it is disruptive and worrying. 

It is concerning, how my life is being restricted. The freedom I usually have to do and go wherever I want, without having to be concerned about what restrictions my body would place on what I can do. 

How has living with Chronic Pain impacted your life?   

I think the price of activity. Normally, recovery would be a lot quicker after having engaged with some form of exercise or activity. But now, I have to think more about any activities I do and the recovery process attached. Because in some cases, the pain may be manageable but there’s the associated inflammation which will restrict movement or there's an alarm to say there could be an episode of spasm.  

So, it’s having to be more mindful and calculated in my approach to what I do. Now I need to make adaptations, for instance, I like to cycle and I only had a road bike up until last year and sometimes riding that would affect my knee so I had to limit how often I could ride it. But now as an adaptation, I have a power assisted bike which means there's less pressure on my knee joints, so, I can cycle. I can still get around with the freedom of cycling and without having to take the recovery time.  

Are there any misconceptions about chronic pain that you would like to address? 

I suppose because it's not something that can been seen in all cases people may not be aware of the impact it has and how that may affect your ability to work or the intensity of work that you can do. They won't know the time it takes to manage that pain condition. How when you get up in the morning you have to mobilise before getting into your day. It can interrupt your sleep pattern which affects your ability to go about your day.  

Sometimes there's a lack of understanding because when they’re not experiencing it, they can’t really walk in your shoes. So maybe there’s less of an empathetic attitude. Also, from an equalities perspective, the idea that black people don't feel pain as much as others, or we have a higher tolerance for pain, that can feed into a negative self-perception which may impact us doing things when we shouldn't and exacerbating our conditions.  

We feel we should keep going because people may have a negative view on us taking time for our wellbeing and that we may be considered not pulling our weight as a result. So, we may do more than we should to overcompensate and that creates more complications and causes more harm.   

For me there’s been a reluctance to want to disclose my condition at work and to work. I think it's the idea of people's perceptions and how I would be looked at differently. I don't want to be looked at differently and I don't want people feeling sorry for me or limiting my opportunities because of a pre-conceived idea they may have about my capacity or ability. 

What advice would you give to someone going through a similar experience?   

I would suggest that they talk about it and get support from a psychological perspective. There’s adjustment needed in terms of how one sees themselves, how it impacts and changes one’s identity and managing perceptions and judgment as well. It can feel like your body is failing and letting you down and that can be internalized, so, I would say to have a more open view about it and to explore different ways of thinking about their relationship with their body and their pain.  

Why do you feel programmes like PEACS are important, especially for people from ethnic minority communities? 

They are important for a number of reasons. It has taught me a lot and I helped me to explore different ways of thinking and approaching things. I try to read widely and engage in different practices, whether it’s mindfulness, meditation or spirituality. I've learnt more about compassion and self-compassion. I recognise the importance of acceptance and making space for that. 

Also, I like the fact that the focus wasn't just on the pain, the focus was on different aspects of life. It gets people to think more broadly and have a different understanding, not only of their pain but life in general, because the pain is not separate from any aspect of living.  

PEACS also gave an opportunity for people to share knowledge. People were made aware of the opportunity they had to contribute to help others which I think is really important. The way the programme has been designed, I've seen a lot of benefits with the programme.  

What are your hopes for the future?   

That’s a big question! I want to work on becoming a somatic practitioner, because a lot has come to light through the experience of pain, exploring pain - what it entails and how it impacts other aspects of living. We’ve spoke about recognising trauma, surviving stress, and what shows up in the body. I think working in mental health, and working in equality, diversity and inclusion, is that when I work with people from ethically and culturally diverse backgrounds I will be able to utilise my own experience and share that in a way that allows people to connect through someone who is also on that journey of healing and discovery.  

I also want to look at getting back to optimal fitness in a way that doesn't exacerbate my current condition. I have a passion for learning and development, so to do something that isn't just cerebral, but something that has a practical element, it gets me conscious about maintaining movement, which is important in relation to chronic pain and being mindful as well. It's a win win. My hope is to share what I have learned with others, to come together in groups and move forward being more open, letting go of stigma and being self-conscious about my own experience. 

Tell me a bit about yourself 

I am a middle-aged black woman. A mother. Employed. Struggling with my physical and mental wellbeing and the environment I am in.  

We have a roof over our heads and people think when you have a roof over your head it’s okay, but actually your environment has a huge impact on your wellbeing. Imagine for example, you live in a block of flats where people are hostile or where everybody is isolated. Maybe you have a property that’s too small and not suitable for your family. Your environment has a huge impact on your wellbeing. Living in a space that is not suitable for your family causes so much stress, you’re very contained which causes a lot of depression.  

Then there is a lack of help because people don’t realise the impact that your space is having on your health. 

How would you describe chronic pain?  

I’d say stuck.  

With the word ‘chronic’ people usually look for physical signs, they don’t realise the physical ailment is not always seen and they judge you by that. You’re stifled and you’re faced with discrimination. It’s a stifling pain.  

You’re frightened to go to the doctor because, all they’re going to do is prescribe you medication and if you reject it it’s like you don’t want to get better. But it’s not that; you want to be understood. The pain is there, but you want to understand what is happening to your body and you want to find a proper solution.

It's very isolating as well. It’s isolating if you don’t have close family and friends, and even if you do, you don’t want to keep describing the pain in your legs or your back. It’s constant and always triggered. My knees swell and there’s always a constant pain in my lower back. You don’t want to go out, you don’t feel like yourself.  

I’d say it's depression. In the past I have tried not to use that word, but you have to be realistic and realise you’re struggling. Trying to keep your head above water every day. For me my bereavement has been huge, every day is a challenge.  

It's hard when you’ve been waiting decades for housing to accommodate your family to have a healthy life. That’s additional stress on your mental health. You’re also focusing on the wellbeing of your child and in the meantime you’ve forgotten yourself. As a carer you don’t get that support.  

So, it’s hard when you go to the doctors and all they want is to increase your medication but you don’t really understand your illness so you’re left trying to be the strong determined one and people then discriminate because they don’t see you’re weakness. They don’t see the pain, its camouflaged it’s like you’re making this up but inside you’re crumbling. 

Even though we hear that not every disability is visible, there’s still a mind-set out there and you’re judged by that. 

Describe the journey of receiving a diagnosis.  

I think for me it was very casually said. There wasn’t much information around it. I was having pain in my back and knee — I’ve always had it. But when I reviewed the information after the x-ray it was just “oh you’ve got arthritis” and that was it. No one spoke about the lifestyle factors that I could have looked at to help me manage the pain.  

There was no communication, I’ve got so many other ailments following on from my son’s bereavement. Claustrophobia, insomnia — I’ve always got on with it and when you’ve been living with it for so long it’s just a part of your life, there’s no support  

I just got on with what I needed to do. I remember last year they said I have diabetes and again I didn’t receive much support. For my blood pressure they put me on an online self-help programme and I thought how many people are articulate online, I’m in my late fifties. I was so puzzled. It was overwhelming! I'm dyslexic and my processing of information can make it difficult. 

It’s tough living in an estate that is hostile, that’s really impacted my mental health. I get no phone calls; there’s no social life. It’s total isolation. How do you tell your doctor about your environment, they haven’t got the time. I’ve experienced bullying and harassment through work and it’s been tough. 

When I went to the doctor I was in tears, I was so overwhelmed with everything. I hadn’t even told them everything. 

What do you think is important for clinicians to know about living with chronic pain? 

It’s lonely. It’s a lonely road dealing with chronic health issues and mental health problems. There’s not enough support and there is also no holistic care 

I think interpersonal skills are so important. I’ve not had many positive experiences, because I rarely see doctors in person. It’s only telephone appointments, which while they are good, I have to wait two to three weeks.  

I wish I had the opportunity to join the PEACS programme earlier and now I am wondering where do I go from here. The PEACS programme was holistic and could have had more of a positive impact for me if I had joined earlier.  

Where do you find strength 

My family and music - they keep me going. There’s a feeling of wanting to do things in your home. I love cooking and it’s even more important to me now as I’m trying to get rid of pre-diabetes.