In late 2020, I participated in a New Zealand Pain Society (NZPS) webinar on why it is crucial to consider lived experience in pain management: “Pain education webinar on “Nothing about us without us” – A coalition of lived experience experts in Aotearoa New Zealand.”
Alongside sharing this recording, in this short pinch I’m going to outline two of the reasons I think that creating space for lived experience is so crucial for people in chronic pain and for the management of our pain.
1. because lived experience is so diverse.
My lived experience with chronic pain is different from every single other person with chronic pain’s experience. There are of course commonalities that could be good targets for understanding and managing chronic pain, but there are just as many differences in our pain experiences and the social context of those experiences.
This is one of the reasons I blog here, to share my experience as an example of what it’s like to live in this world with chronic pain.
One of the reasons managing pain is so tricky is because different things help different people. The more voices we include in conversations about chronic pain and chronic pain management, the more we work towards having a wide variety of pain management strategies available.
2. because you can’t always tell by looking if someone is in pain.
My husband shared this cartoon with me that captures invisible experiences quite well.
Stigma is often associated with experiencing invisible illnesses. Read Daniel S. Goldberg’s elegant analysis of stigma in chronic pain. In Goldberg’s definition, stigma is a signal of difference. I hope (not based on any evidence here) that the more people who are comfortable* to share their lived experiences, the less stigma will be experienced by those of us with chronic pain. I hope that there will slowly be change in how people with chronic pain are understood and treated by those close to them, medical professionals, and by societal structures when seeking assistance to live the life that they want to.
This is another of the reasons I blog here, to give people who don’t know what it’s like to live with chronic pain a real, concrete example. To strip back some of the invisibility.
* comfortable is not exactly the right word here, but sharing your experience is a personal choice and not an easy one.
The trickiness of chronic pain is its chronic-ness. It’s ongoing, unending. Auto-correct suggested chronic mess for chronic-ness, that seems sadly apt for how I feel and sometimes how I feel I am seen.
Researchers use the words chronic and persistent to describe pain, fatigue, nausea, itch, ulcers, wounds, stress, sadness, fear… The whole Pandora’s box of ills that humans can experience that carry on beyond the “normal” or “expected” healing time.
Chronic and persistent are neutral words that convey the time aspect but not the emotionality of the experience. Not the draining of you and the disruption to your place in your world that happens when the pain doesn’t ease.
Our society isn’t set up for those of us with chronic illnesses. It doesn’t know what to do with us.
We may not be productive in the usual ways the social systems we live in expect. We may need support or accommodations for elements of our daily lives. There may be no label for our constellation of symptoms. No pill or surgical intervention to right us.
I’ve had people ask “what’s wrong with you now?”. I violate the expected course of illness.
By violating the expected, I sometimes feel like I hover on the edges of life. Statements like “what’s wrong with you now” confirms my feelings that I am the b word.
With no medical ease to my pain, I turn to non medical solutions. Here is a list of all the Western medical and alternative remedies/approaches I can remember trying to help manage my different pains, in no particular order:
Other anti-depressants/drugs originally developed as antidepressants
Some of these made no difference, some had awful side effects, some helped but the relief didn’t last, and some help me manage my pain. I’m sure I’ve forgotten many things I’ve tried. Now I use a combination of approaches that are a mix of Western medicines, seeing professionals, and things I can do myself. I’ll talk about what I do in an ongoing fashion in another pinch – managing pain is a full time job in itself!
In this big pinch, I’m going to describe some of my PhD work that looked at attention in pain, as a concrete example of the research process to understand why pain makes it hard to think.
Words in blue bold text are research jargon; I’ll define these as we go along.
Science is a team effort in many ways. You work with other researchers, build on the findings of many other researchers before you, and ask for participants to participate in your experiments.
For this research, published in 2020, I worked with Dr Gina Grimshaw, Dr Ron Fischer (my primary and secondary PhD supervisors respectively) and Dr Amy Walsh.
I am very grateful to all the people, with and without chronic pain, who volunteered their energy and time for my experiments. Psychology research cannot happen without research volunteers. The methods I use involve looking at behavioural responses to tasks (accuracy and response time). You cannot make inferences from one person doing one task. Rather, you need many people doing the task multiple times to get stable estimates of the phenomena of interest.
I do not take this volunteering of time and energy lightly. Everyone has things going on in their lives, and they give some of their day to us as researchers.
For this pinch, I draw on writing from my PhD1 and from the article published in Clinical Psychological Science2.
In research we have a question we are trying to work towards answering. That research question in Psychology could be about an aspect of the mind (e.g., memory), the brain (e.g., the hippocampus), and/or behaviour (e.g., following a route). We want to understand what is driving some aspect of human activity.
As well as your collaborators and participants you are also drawing on work of scientists before you. Research doesn’t build from nothing. Other scientists have published studies on attention in chronic pain; what had they established? There were two main groups of findings on the impact of pain on attention. 1) attention was “interrupted” by pain. 2) people with chronic pain showed greater attention towards information relevant to pain and away from information not-relevant to pain. These findings led me to design research to test between two hypotheses about how the mind controls attention in pain.
Hypotheses are statements that describe how you think the phenomena of interest works.
In the cognitive psychology theories I drew on, attention is seen as a finite thing. There’s only so much of it available for us to focus on our day-to-day tasks and goals. Under this view, in chronic pain, attention is directed to the pain sensation and away from current tasks and goals. This leads to broad cognitive deficits; difficulties in thinking. I referred to this view as the deficit-view of attention in pain (hypothesis 1). One way to look for deficits is to compare how fast people with, and without, chronic pain respond on tasks. That is, reaction time.
However, there was that other set of findings – on attentional bias. An attentional bias means a tendency to attend to certain kinds of information over others. Some experiences can act as motivators (e.g., hunger, thirst, pain, itch) that makes it easier to process certain types of information (for example, things that are related to threat) and impairs processing of other, less relevant, information (such as, our current task).
The enhancement of processing some types of information is called an attentional bias. An attentional bias to pain related information has been observed in people with chronic pain, suggesting that attention is motivated towards information in the environment that is pain related, and away from information that is not. Such an attentional bias may contribute to the cognitive deficits observed with tasks using neutral information (motivated attention view; hypothesis 2).
The stimuli, or information in the experiment could be anything, something you perceive with your senses. I focused on visual attention with visual stimuli both related to pain and neutral (e.g, images).
In testing for evidence of the deficit-view and motivated attention view of attention, we needed to use a method to observe attention and state testable predictions for the hypotheses. Testable predictions are basically “if…then” statements. If we observe x then this is support for y hypothesis. Again we drew on work by others. We used a task that allows you to infer distraction by different kinds of information.
Specifically, the task examined how people can be distracted by emotional images. Emotional stimuli are important for our survival, and are usually given priority by our perceptual and attentional systems. However, sometimes it is important to ignore emotional stimuli so that we can achieve other goals; I need to ignore the ice cream truck so I can get my work done. We asked the participants to do a simple perceptual task (looking for a letter) and measured how quickly they responded; their reaction time (the dependent variable = what I measured).
The independent variables in experiments are what the researcher is manipulating. We manipulated a) whether an image was presented at the same time as the letters, and b) the nature of the image. On some trials, a distracting picture was also presented which could be either convey a pain-relevant body-tissue threat (mutilations or injuries), or neutral (people doing day to day things).
Generally, we expected, based on previous research with this emotional distraction task, that threatening images would be more distracting than neutral images; and confirmed that in a pilot experiment (a small experiment to prepare for the main experiment, to check things are working as we expect them to; like a pilot episode for a TV show). People were slower to respond to the letter task when there was a threatening image present than when a neutral image was present, reflecting greater distraction by the threatening images.
Our testable prediction for the deficit-view was: if chronic pain interrupts attention broadly, then people with chronic pain should be much slower to respond on trials with a distractor than without a distractor(a bigger difference than observed in people without chronic pain). Our testable prediction for the motivated attention view was: if chronic pain draws attention to threatening information, then people in chronic pain will be more distracted by the body-tissue threat images than people not in chronic pain.
However, that isn’t what we found. Our hypotheses were not supported. We observed that there was an attentional bias towards the body-tissue threat information; people were more distracted (slower to respond to the letter) by body-tissue threat images than neutral images.
However, when we compared the size of the attentional bias to body-tissue threat images in people with and without chronic pain, we found no difference between the two groups. This suggests that chronic pain does not motivate attention towards signals of threat to body-tissue any more so than is observed in people without chronic pain. Rather, an attentional bias towards images of body-tissue threat is present in groups of people with and without chronic pain.
We did include other tasks and questionnaires that I won’t describe in detail here. Overall, although chronic pain does not seem to impair peoples’ ability to focus when distractions were present, participants with chronic pain reported feeling like they had less attentional control and that they paid more attention to pain than participants without chronic pain. On tasks where we measured how long it took to make a response, participants in chronic pain were slower to respond than participants without chronic pain.
These findings together suggest that something has changed in how people with chronic pain complete these attention tasks, but from my PhD work we now know that this is likely not due to an enhanced attentional bias to pain-relevant information. It is likely not due to an impairment in attentional control. Perhaps another process such as early perceptual processing, or memory, or decision making, underlies cognitive difficulties in chronic pain.
In summary, the data do not support either the deficit-view or motivated attention view of attentional control in chronic pain. While completing my thesis I also carefully reviewed other research on how pain affects cognition. While it is commonly experienced that pain ‘makes it hard to think’, there are many studies that don’t find these deficits on performance of tasks, and so it is not clear what aspects of thinking might be affected. In terms of clinical use to reduce difficulties in thinking, we do not yet understand enough about how pain affects cognition. More research is first needed to identify potential mechanisms by which pain affects cognition. Once we understand the underlying mechanisms, then we can develop targeted strategies to help people in chronic pain manage their difficulties in thinking.
In a next pinch I’ll write about my experience of doing research to further understanding of pain as someone with pain.
2. Godfrey, H. K., Walsh, A. T., Fischer, R., & Grimshaw, G. M. (2020). The role of attentional control in cognitive deficits associated with chronic pain. Clinical Psychological Science, 8(6), 1046-1053. https://doi.org/10.1177/2167702620925744
I said when I started this blog that I wouldn’t put pressure on myself if I didn’t write regularly. All in all, I’d give myself a B+. Very good performance, but not excellent1. I haven’t posted since August and have felt only a little guilty about it. I often feel guilty when I don’t do things because of my pain (the b-word arises) and I really didn’t want Pinches to be associated with guilt.
I am still here and still want to write about my pain and pain science. I need to practice being kind to myself and work on Pinches when I have the mental capacity to – it shouldn’t be a chore. My pain makes it hard for me to think. Between life and work since August, there just hasn’t been any brain space for Pinches.
It’s hard to describe what it feels like when I can’t think properly. I find it very hard to talk, to find the right words. Once in exasperation when trying to talk, I said “my brain closet is full“. This is the closest I can get to conveying the feeling that there is absolutely nothing left for thinking, for making decisions.
The last week has been hard, pain- and fatigue-wise. I’m very lucky that I’m in a work position that is flexible and have my awesome, supportive people around me. I can work at home if I need to. I can take a nap if I need to and pick up work again later in the day. The last two days have been better…I’ve managed to do some crosswords and am writing this pinch!
Alongside the pain, life has been really, really good. I’ve got some research and amplifying lived experience news that I’m excited to share with you too.
 I’ve been doing a lot of marking the last few weeks. I’m assigning grades to everything!
The hardest thing about my ongoing pain is the recurring thought that I am a burden. It’s taken me over a month to write this post. That’s how hard it is to even think about, even now when most of the time I don’t have thoughts that I am a burden.
When my pain is at its worst and I can’t do anything else except lay in bed, that’s when I feel like a burden. When I can’t spend time with my family or friends, when I can’t cook or clean or do washing, when I can’t work; I start to think about how useless I am, how I don’t help with anything or contribute, that I am a burden.
Feeling like a burden is overwhelming, I’d do anything not to feel it. So, I used to try to hide my pain, to push it away even from myself. Never ask for help until I was too unwell to do anything for myself.
The people who love me have never made me feel like a burden. The number of times I have actually been made to feel like a burden are few. So why do I get these thoughts?
For me, I think partly my character and partly society drive this recurring thought.
Character wise, I’m a perfectionist. I put a lot of pressure on myself. When I was first in the pain management programme, I was resistant to the suggestion that I could relax the demands I make of myself. My healthcare team gave me journal articles to read about perfectionism and chronic pain to help me see the link between my expectations and my pain (they learned an effective way to get through to me pretty quickly!).
Society wise, we are a ‘productive’ culture. You are seen to be succeeding when you contribute to society by working, by looking after yourself and your family. There is a stigma around not being a productive part of society.
I’m going to refer back to an image from my last blog showing my pain in a biopsychosocial model (described fully in Sad, not happy):
Another aspect in the widest circle are cultural norms and stigma regarding how we see those who need support in our society. I see these norms and stigma every day in my life, for example in the limited support we give to those who cannot work for various reasons (even in New Zealand with a history of relatively good social support), the attitudes towards people who need support, even the language we use about the cost of chronic illness1 and metaphors in our day-to-day language (e.g., “pull your weight). All this information reinforces the perfectionist in myself and on bad pain days I can feel like a burden again.
These days, when I have good self-management techniques, the thought never lasts for long, but can you imagine how crushing it is to feel even for a short period of time?
I know I’m not the only person with chronic illness to feel this way2. It is important to recognise the link between thoughts and pain, as in the biopsychosocial model, because these thoughts don’t exist apart from the pain; they are associated with increased pain.
The point of sharing that I sometimes feel like a burden, is to make this aspect of chronic pain a little more visible.
You see, I’m not a burden. Even when I can’t help out, or need to cancel plans, or need time off from work, I’m still a valued person who brings a lot of joy to my family and friends. I just need support sometimes. If more people understood what life was like for those with chronic pain (and illness more widely), that we are just ordinary people who need support. Not burdens on our family and friends, or society. Then this recognition might begin to reduce the stigma in society and the pressure on the thinker of the b word.
Auckland University of Technology (AUT) is currently running a project called “Stigma: How Does it Affect People with Chronic Pain?”. If you experience chronic pain, please consider participating. It is an online survey and takes approximately 30 minutes. I’m going to participate now: https://aut.au1.qualtrics.com/jfe/form/SV_3Ia4KppeaE5LHN3
Kowal, J., Wilson, K. G., McWilliams, L. A., Péloquin, K., & Duong, D. (2012). Self-perceived burden in chronic pain: Relevance, prevalence, and predictors. Pain, 153, 1735–1741. https://doi.org/10.1016/j.pain.2012.05.009
Question from health professional: “How do you feel?”
Answer from me: “Sad… not happy”.
Pain is multidimensional. The experience of pain is not generated from physiological processes alone. Considering the multidimensionality of pain is especially important for both 1) understanding why chronic pain has such a large impact on peoples’ lives, and 2) for developing effective pain management for each person.
There are many models of pain that try to capture the varied dimensions of pain. In biopsychosocial models (1), there are sensory, affective, cognitive, and behavioural dimensions1. There are many variants of biopsychosocial models so I’ll outline the general way these dimensions are described.
The sensory dimension is the “pain” part of the pain experience. This includes physiological processes and systems, such as activation of nociceptors (free nerve endings in our periphery which are sensitive to heat and cold, pressure, or chemicals).
The cognitive aspect is the thoughts or “cognitions” about pain that a person has. For example, not being able to stop thinking about pain.
The behavioural dimension is the action or inactions associated with pain. For example, avoiding certain movements.
The affective dimension is the emotional feelings a person with chronic pain may have about their pain. For example, feeling scared that the pain might never go away.
These dimensions do not occur in a vacuum. A person lives in a social environment: family, friends, work, communities, countries. These social environments affect the immediate sensory, cognitive, behavioural and affective dimensions too.
I’m going to give a personal example to illustrate the importance of considering the affective dimension in pain management.
In 2012 I was assessed by a group of health professionals at a Pain Management Clinic. I was in the midst of the worst flare up of my fibromyalgia that I had experienced (and is still the worst I have had). When I went to the Pain Management Clinic, I did not know a lot about pain or pain management.
One of the concerns identified in this assessment was that I could not name my emotions. When asked how I felt, I could only reply “sad” and “not happy”, which to any person seeing me would have seemed like a huge understatement.
At this point in time, my pain was out of control, I was taking large amounts of codeine, taking other medicines to manage the side effects of taking so much codeine, and the one way I knew how to cope – pushing my pain aside until later – had stopped working. I was deeply depressed. I had resigned from my job and was basically spending most of my day in bed. And all I could say, was “sad” and “not happy”.
When I was then asked just to name emotions, I couldn’t even write a list. This was quite shocking to me. My honours and masters research in psychology had been on emotional language. I had spent hours thinking, reading, and writing about emotions. Yet, I could not list emotions. There are quite a lot of emotional feelings or states!
Happy, sad, angry, fearful, surprise, disgust are basic emotions, and then there are all their nuances; delighted, distraught, steaming, terrified, shocked, revolted to name a few. And all I could say, was “sad” and “not happy”.
Alexythimia describes this inability to name emotions you are experiencing or that are being experienced by others.
At the end of this first visit to the Pain Management Clinic, I had learned that it wasn’t just the sensory dimension of pain that was stopping me from managing my pain and living my life. All dimensions of my pain needed to be addressed.
It is easier to change some dimensions than others. Thoughts and behaviours are the easiest (though by no means easy!). In the next pinch, I’m going to give a personal example to illustrate the importance of considering the cognitive dimension in pain management.
 Some biopsychosocial models have three dimensions.
Asmundsen, G. J. G. & Wright, K. D. (2012). Biopsychosocial approaches to pain. In T. Hadjistavropoulos & K. D. Craig (Eds.), Pain: Psychological Approaches (pp. 35–57). New York: Psychology Press.
I am now open about my pain with my family, friends, colleagues and even people I’ve just met. This is not how I was for most of the time I’ve had chronic pain.
For a long time the way I handled my pain was to tell myself that I couldn’t process what was happening now, I would “deal with it later”.
I deliberately haven’t used the word “managed” as looking back, I don’t think I was managing my pain at all.
I imagined my pain was a ball that I could isolate and put aside, out of sight, to be “dealt with later”. I did this for years. I started “dealing” with my pain this way in school when I had pain from my jaw, knee, and hands.
I continued this in university and in the rest of my daily life.
It was exhausting and not very effective.
Shutting myself off from pain started to extend to my emotions too (the next pinch).
Hiding my pain meant asking for help was hard. I hated asking for help for two reasons. It meant feeling like a burden (the pinch after next) and it meant bringing the pain into sight and feeling it.
This combination was often overwhelming. As I never brought the pain up to myself or to others, I was alone with the thoughts of feeling like a burden and terrified of how bad the pain could get.
I’m going to skip ahead now to end this pinch on what opening myself up to my pain has meant.
I realise now that although my pain is not who I am, it has shaped who I am. I like who I am so that’s not a bad thing.
I have found that the more open I am about how I feel about my pain, the more open I can be with other people; and the deeper relationships I have.
Everyone has something difficult in their lives, often more than one thing.
It took me a long time to stop hiding my pain. I still by default don’t want to talk about how I’m feeling when the pain is bad.
When I do talk about my pain, I feel a relief. It takes a lot of energy to hide my pain and I’m not hiding what shapes me from people who care about me.
I drafted this pinch on my phone one evening. I’ve left the first half as I wrote it in the moment.
Pain in the moment
It is 6.20pm on a Tuesday evening and I’m struggling.
My pain has flared up over the last week. I’m stuck in a loop where I’m sore so I’m not sleeping well, but not sleeping well makes the pain worse, which means I’m sore so I’m not sleeping… aargh sums up the frustration.
I’m in bed already. I’m trying to focus on a thought which was key to a shift in how I managed my pain.
At the Pain Management Programme, I was introduced to this thought: it is not my job to deal with any future pain, it is only my job to deal with the pain in this moment.
I used to panic when I felt this level of pain. I would spiral into thinking: how am I going to cope if this never eases? How will I have any life? How will I work?
All that worry took a lot of energy. It certainly didn’t help me manage the pain!
Dealing with the pain in this moment is a type of mindfulness.
“Mindfulness” doesn’t only refer to one thing. There are lot of aspects to mindfulness and many ways to be mindful. People practice mindfulness for many reasons. One reason is to help manage pain.
Researchers measure whether mindfulness practice is effective for pain management by asking about changes in pain or other quality of life factors. In some studies, some types of mindfulness seem to improve some measured outcomes1,2. There’s still a lot we don’t understand about mindfulness and pain management.
As with all strategies for pain management, it is about finding what works for you. If mindfulness doesn’t work for you, don’t do it. If some parts work for you, just do those.
Being aware of my pain and trying to let it, and the emotions and thoughts that accompany it, go by without judgement, is really not for me! I tried for a few months but I find this type of practice makes me more distressed.
Focussing on my breathing helps me to lose some of the tension associated with my pain.
Reminding myself that I am here in this moment and I only need to manage the pain is this moment, not in a minute, or in an hour, a day, a week, a month or a year helps a lot.
So, I’m here dealing with the pain only in this moment.
I can see that I’m going to write many pinches about fibromyalgia as this is my pain condition. I’ve labelled this pinch “fibromyalgia (1)” as I don’t know how high the numbers will go.
In this pinch, I’ll give a glimpse into what led to the start of my pain management journey – from when I first began experiencing pain that persisted to when I was diagnosed with fibromyalgia.
Getting the diagnosis, the syndrome itself, and my experience day-to-day of having fibromyalgia is complicated. Neither the diagnostic process, the syndrome, or the day-to-day experience of having fibromyalgia is well understood.
Growing up, I had several chronic pain experiences: temporomandibular joint (TMJ) disorder starting at 10 years old, with many years of uncomfortable dental treatment (a series of plates to expand, then stabilise, my jaw); repeated kneecap (patella) dislocations starting at 11 years old, culminating in surgery when I was 16; and carpal tunnel syndrome in both hands starting at around 15 years old (surgery when I was 17).
These were painful experiences, and chronic in that the pain persisted for more than three months. I still have residual effects, including pain, in my jaw, knee, and wrists. I didn’t have widespread pain though, pain beyond the specific areas that had healed tissue damage, until I was 18 years old, in 2005.
I started feeling sore all over, all of the time. This was new. The pain was confusing. The deep achy and burning sensations moved around – I wasn’t sore in the same place all of the time. The symptoms that came with the widespread pain were new too – debilitating headaches, general feeling of being unwell (like the beginnings of a virus), low grade fevers (around 38 degrees Celsius), and brain fog.
Brain fog is a colloquial term for cognitive dysfunction in attention, memory and decision making (1, 2). Fibro fog is brain fog specific to fibromyalgia.
“Brain fog” captures the feeling of your thoughts being fuzzy. It can be incredibly hard to think. For me, when I have brain fog, I struggle to find the words I want to say. My usually quick thinking, questioning brain seems to grind to a halt. It’s an effortful struggle to follow a plot in a book, or even a conversation.
I also experienced hyperalgesia and allydonia.
I didn’t know the terms for these experiences but they were signs that something had changed in how my brain and body were processing, and interpreting, signals of nociception (of danger to body-tissue: heat and cold, pressure, and chemicals1) and touch.
This diagram below shows the relationship between how intense a stimulus is (e.g., pressure or heat) and the reported level of pain (here on a scale from 1 to 10). The diagram shows a change in sensation for the same level of stimulation as a result of injury.
Hyperalgesia describes the phenomenon where something that usually hurts a little, hurts a lot. Bumping into a doorway hurts a little (well depending on how hard you do it!), but for me it can feel like I imagine it would if someone took a hammer to my arm.
Allydonia describes the phenomenon where something that doesn’t usually hurt, hurts a lot. Your clothes sitting against your skin is usually unnoticeable, but for me it can be not just noticeable but painful.
Over more than a year, I went with my Mum to my GP, to various specialists, and finally to a Rheumatologist to try to find an answer to the scary, strange, unpredictable, collection of symptoms I was experiencing.
A Rheumatologist is a medical professional specialised in understanding and treatment of autoimmune (impaired inflammation response) and musculoskeletal conditions such as the varieties of arthritis, lupus, and fibromyalgia.
Along the way I had a lot of tests! I’d had some earlier when I had carpal tunnel syndrome. It is unusual for someone so young to show evidence of nerve damage in nerve conduction tests – so I’d had an MRI to rule out Multiple Sclerosis (MS).
To sum up the tests, thankfully there seemed to be nothing physiologically wrong with me. Yet something was evidentially wrong with the amount of pain I was experiencing.
The Rheumatologist diagnosed fibromyalgia by 1) ruling out MS, lupus, forms of arthritis, and many other autoimmune and musculoskeletal conditions; and by) testing for tender points.
I didn’t have any signs of any other conditions, and I was sore when touched in many of the 18 tender points. In my final appointment, my Rheumatologist told me I had fibromyalgia and sent me away with a leaflet about it.
The leaflet was produced by Arthritis New Zealand and was an older version of this leaflet2.
So, my diagnosis process ended with me being sent away with a leaflet. My pain management journey started there and is an ongoing process.
Spoiler alert, there were some very hard times ahead. Especially in 2012. To be continued in fibromyalgia (2)….
 Nociception will have its own pinch at some point.
 Arthritis New Zealand are a wonderful organisation. They support people to manage their arthritis and pain, and raise awareness about different forms of arthritis. I have attended informative sessions about fibromyalgia and pain management run by their educators. Their Facebook groups connect me to other people with pain.
One thing I starting noticing once I had chronic pain was the images used to depict pain. I noticed what images were commonly used to show pain, and what images weren’t.
Open a new tab now and Google “pain”, look at the images tab. What do you see? Do the same for “chronic pain“.
You’ll see images of the nervous system and of people (both cartoons and real) curled up, tensed up, screaming, crying.
I’m not saying these images don’t depict pain. They do and the photographers capture this pain, physical and emotional, in a beautifully raw way.
However, most of the images are of people alone. Some of the images have few clothes on.
Yes, pain is a personal experience. Yes, pain is an unpleasant experience. Yes, pain is a vulnerable experience.
You don’t often see images of people in pain with other people though. And if you do it is usually an unidentified hand, or in a healthcare setting.
You don’t often see images of people in pain doing activities or out and about.
I believe this depiction is one factor that contributes to the invisibility of chronic pain. Real people with chronic pain don’t look like the people in images of “pain” so they must not have real pain. I don’t look like the people in images of “pain” so I must not have real pain.
I have real pain here:
I’m out and about here. Before this photo was taken I’d been on a walk with my husband and his parents while we were on holiday. I was sore and tired and needed a rest. That’s what we’re doing here. Resting (my husband calls it Hazel-management) before continuing on with the rest of our day. I’m living my life.
I have pain here:
I’m doing my job here. This is me introducing a speaker.
Sometimes I get a bit stubborn and still try to do the things I love when the pain is worse than usual. Then it’s a bit more noticeable that something’s not right.
People can live a full life with chronic pain. I live a full life with chronic pain. My life is different than it would be if I didn’t have chronic pain but not lesser. I don’t think about my pain every hour of the day.
I do often need help. My husband helps me, my parents support me, my friends are there for me. I have flexibility at work. I have had lots of professional healthcare support to develop pain management strategies that work for me. I take medication.
With this support I am able to be me. To do the things that bring me joy – spending time with my people, learning, reading, attending music and science events. With this support I am able to be a good wife, family member, and friend, and to contribute to my fullest ability at my job.
If chronic pain was a little less invisible, then my journey to get to where I am now might have been easier.