Real stories from young people living with pain

Jordan's story

Hi. My name's Jordan Woodward. I am 17 years old. I study full-time and I have a part-time job and I've had chronic pain for around nine years.

It normally stays in my kidney and in my bladder, because that's where it is for me, but it can make me feel quite tired and sore, like achy.

With trying to prevent my chronic pain, I do do some exercise to try to make my body a little bit stronger, so when the pain does come along, it's not as hard of an impact. And, I work on my mental health because that all affects the pain. And if I feel a little bit sore, like starting to have a flare up, then I will take it easy and kind of slow down a little bit, just so it doesn't get worse.

When my pain flares up, I do breathing, like trying to slow down my breathing and focus on that instead of the pain and then I use a heat pack and panadol and nurofen and I have medication for anxiety and my chronic pain. And then, I'll just try to rest more without stopping doing things, because then next time my pain flares up it will be worse.

Once I get my pain under control, then I feel kind of proud of myself and kind of relieved at the same time, because I don't have to deal with it. But, then it's kind of... I have like a little bit more courage for next time, so I can kind of just say, well, it wasn't that bad last time and I got it under control, so I can do it this time.

With the relief, it's kind of like, phew, it's over... but then at the same time it's like, oh, it's going to happen again, so I've got to kind of prepare for that.

The most important thing I do to manage my pain is probably understanding how I'm feeling and what I think I'm able to do that day. And, if I think I do need to do my breathing work before I get out of bed to get me ready for the day and taking more medication and just really understanding what I need is the most important thing.

I feel like it's pretty easy for me to get my pain under control because I've done a lot of work with the chronic pain team, so I do my breathing and I have my medication and I've done all the psychology work behind it and I understand how the pain works and why it's there.

If you're looking for information about chronic pain, go to your doctor and try to learn a little bit more about chronic pain, so you can understand why it's happening to you.

My name is Raimy. I am 25 years old and I work and study at university and I've had chronic pain on and off my entire life, but consistently for five years.

So, I have hypermobile Ehlers-Danlos syndrome, which is a connective tissue disorder and the chronic pain is caused because of the tightness and unstableness of my joints and muscles.

I have two different types of chronic pain. The first one, mostly I just feel very fatigued and run down. I don't really have any energy to do anything. And the other one is just in my individual joints, so it's just that type of achy muscle pain. It's not always the easiest to get my chronic pain under control.

I think mostly just rest, because it doesn't really feel like I can do much else, maybe pain medication. I try not to take it too much and if it's more in my joints or muscles, maybe try to stretch it out, try to relieve the pressure or go to my physio.

I do a lot of physical activity, so I go to the gym. I do aerial arts, so hoop and hammock. And I also go to the physio and she helps loosen my joints and muscles which really helps stop that pain.  I think movement is the main thing that helps because it stops my joints and muscles getting stiffer than they already are. You have to be really careful with doing it and overstretching.

Also, getting a ball and lying on it in the points that hurt really helped release that pressure, which is basically the same thing that my physio does, it's just an 'at home' remedy.

Mostly I see my GP, but since going to my physio because she helps so much with that joint and muscle tightness, she is probably one of the main people I see for that second type of chronic pain. And then the first type of chronic pain, I see a GP and I am going to see a dietitian soon, who actually specialises in hypermobility and chronic pain, so that will be good.

When the chronic pain happens, it's definitely frustrating. You know, it makes it feel like there's a lot of things that I want to do, but can't do. I have to take a lot longer than other people to rest and it takes a lot of time away from my day and my life, so that can be very mentally frustrating and exhausting.

It's really important that I do those preventative measures for my chronic pain. I get it on such a smaller scale now than I used to and I've noticed such a big difference and now because of that, I have more time and energy to do things that I can do, other things like, for example, the aerial hoop and hammock, that I wouldn't have been able to do as well before, so they're really important.

So, I'm currently studying at university and I'm going to working as an early childhood teacher, which I really enjoy. I do think managing my health will play a part in my career. There are going to always be limitations. You know, I may work four days a week and then maybe some additional hours on the side working as a health advocate.  But even though I can work four days a week, working five days a week is a real struggle for me.

Yeah, I think I've found a lot of really good prevention techniques that have worked for my chronic pain and condition. And I'm health wise, probably at the best that I've ever been, which is really great and getting that diagnosis, because I didn't get diagnosed until I was 22, was really helpful and now I can work on prevention for the future, so that my health is better in the future.  And yeah, I think everything's looking pretty good at the moment.

My name is Joshua.  I am 19 years old.  I've been working full-time and I've had chronic pain for the last ten years or so now.

So, my pain is my hips and down, so primarily my legs and my knees, my feet, my ankles.  It's an electric burning type, constricting kind of pain where I can't really move my muscles properly and I lose the ability to move, in a way, I guess.

So, in my instance, I also have my trauma, as well as my persistent pain. They're both very interlinked and they both carry their own challenges.

So, my pain, it has like a very big range - it can go from being... I don't even really feel it for a day to I can't get out of bed in the morning and I have to take a day off work.

I'm always in some level of pain, but I can usually keep it at a monitorable level, like on a scale of 1 to 10, I can keep it like a four where I can still function, still do my daily tasks,

still work, that sort of thing.  But, it also can jump to a ten in a matter of seconds, for no reason.

So, I had been a public health outpatient in the orthopaedics for about six years before I had my surgery and it was after my surgery that I was introduced to the pain team, as my pain was still very much there after my surgery.

Through my physio, I feel I was able to build muscle mass and muscle... like just strength. It was also able to, I feel, keep my chronic pain from increasing in terms of getting less movement.  It allowed me to, I guess, remain physically healthy, whilst not being able to do most activities that someone my age could.

And it also, in a way it helped me mentally, in terms of just giving me a kind of like a cushion, in terms of like I feel like I'm doing this to improve my pain, which was able to I was able to tell myself, which made me feel better about being in chronic pain.

My pain service has giving me techniques and able to help deal with my pain.  They've given me, I guess, just a general... more knowledge about chronic pain and what it is.

I do a mindfulness exercise whenever my pain flares.  I call it 'the five senses'.  Basically, what it is, is it brings you back to the present and makes you focus on what's happening around you, rather than what's in you, I guess is the way to describe it.  It allows me to really kind of get a grasp of my pain and to pull it down into a more manageable situation.

I try to just say, like to myself, for example, I'd go, okay, my pain is flaring, what was the cause for it?  What am I doing right now?  Am I in a safe place?  Am I able to slow down? Am I able to stop what I'm doing?  If I'm at work, do I need to talk to... do I need to tell somebody? What can I do?

I try not to make a big deal about it.  If I feel like if I make a big deal about it,

it amplifies it up. So, I try to keep myself calm, work through it as best I can and go step by step. So, I learnt it at a pain course, which I was put into.  That course taught me

quite a few different techniques and mindfulness exercises to be able to manage my pain. But for me, the main one that works is 'the five senses'.  It allows it to be way more manageable and allows me to go on with my day.

So, now as I've gotten older and I've become more experienced with my pain and become more educated, I wouldn't say it's easier for me to bring it down, but I at least know what to do.  And I understand why it doesn't come down and why it does come down and the sort of different techniques and actions I can do to lessen it, lessen the impact of my pain.

So, my pain service, not only has it help my physical health, but it's greatly helped my mental health.  It's been the most helpful as well, in terms of me feeling better.  Mentally, I've become much more able to deal with it and much, much, much more able to understand my pain.  So, it doesn't feel like this giant barrier blocking me out from life, it feels like something that I can just live with.

So, for the people in this community suffering with chronic pain, suffering with trauma,

I want to be the person that I never had.  I want to be the person that they can see

that has had these issues and that is still going.  I want to be their role model.  I want to be their, I guess even, their inspiration.

I want to be able to show them that there is a way forward.  It's not going to be easy, but that it's possible and you can do it. Through these steps, through these services, through these people, that there's hope, that you can still function.