I was nervous to get the Covid-19 vaccinations

I had my second Covid-19 vaccine yesterday (Pfizer). I am nervous each time I get a vaccination. It is a perfectly common experience to be nervous before a vaccination for a variety of reasons. I feel nervous because I worry about a flare-up of my chronic pain.

This concern comes from the fact that a large part of my time and energy is directed towards micromanaging my life so that I can do all the things I need and want to do. A flare-up can throw a spanner in the works of my management plan.

There was never a question that I was going to get the Covid-19 vaccination as soon as I was able. In my thinking, any risk of a flare-up from the vaccination was way outweighed by the risks of getting sick with Covid-19. Even if I wasn’t a severe case, illnesses to tend to lead to temporary flare-ups of my pain; so a novel virus my immune system was unfamiliar with was very likely to cause a flare-up. Beyond the personal benefits and costs, getting vaccinations is something I choose to do because for any illness the more of us who can vaccinations, the less risk there is for those in our communities who are at higher risk and who can’t get the vaccination themselves.

I am desperately tired today and my pain levels are up. I’m writing this pinch in my pajamas. I got the vaccination around 9.30am yesterday, by 12.30pm I was asleep. It is now 6pm the following day and I estimate I’ve spent 19 of the past 32 hours asleep. Hopefully this means that my immune system is learning to recognise the spike proteins on the outside of the SARS-CoV-2 virus, so that if I encounter the virus I won’t get sick with Covid-19 and have less chance of passing it on.

Aside from a bit of a sore arm and higher pain levels across my body, the fatigue is my only side-effect and the most disruptive one. Even when I’m awake, I’m not up to doing much except lying in bed or on the couch, reading or watching TV. The arm pain isn’t really registering unless I move suddenly, I can even lay on it. The increase in my regular pain is not stopping me from sleeping.

I had a similar experience after the first Covid-19 vaccination, though with less extreme fatigue. I was hopeful for a similar experience for the second, but still apprehensive about a flare-up. Everyone is different and no one can tell us exactly what we’ll experience.

I’ve had several people with chronic pain contacting me in the last few months asking what I think about getting the vaccine. I’ve shared my worry and decision process with them, an example:

Two disclosures, I’m pro-vaccination generally. And I’m not a medical doctor and don’t know your medical history. Now my opinion: Everyone who can, should get vaccinated because a) getting Covid-19 will be way riskier and worse for an individual’s health than side effects from the vaccine are; especially for those of us with underlying health conditions, b) getting the vaccination protects others around you, including those who can’t get vaccinated. I’d suggest, based on hearing from people with health conditions who’ve had it, booking a day off work/study after. Most of them have been fine but some have felt a bit rotten. I’m a little scared of having a flare-up but I’m going to get it. Here are some sources from the experts I trust:  https://www.pmcsa.ac.nz/topics/covid-19/covid-19-vaccines/

I’m sharing my experience here, not because my experience will be what you experience, but because there is a lack of acknowledgement of the concern those of us with chronic illnesses have about the risk of flare-ups when we get the vaccine.

When I went searching for information beyond my own experience and friends’ experiences with chronic pain + the Covid-19 vaccination + flare-ups, I found people in support groups sharing their experiences and one video from an Arthritis organisation in the US. Today I found a short research abstract (Machado et al., 2021) reporting flare-up occurrences from 1519 people with rheumatic and musculoskeletal diseases (RMDs) who received a Covid-19 vaccination. 5% of those 1519 people reported “disease flares” and 1.2% reported “severe flares”.

There are two quotes I want to highlight from Machado and colleagues’ abstract:

  1. “Vaccines are a key pillar of public health and have been proven to prevent many serious diseases. However, vaccination also raises questions, especially for patients with inflammatory RMDs and/or treated with drugs that influence their immune system.”
  2. “The safety profiles for COVID-19 vaccines in RMD patients was reassuring. Most adverse events were the same as in the general population, they were non-serious and involved short term local and systemic symptoms.”

The first quote acknowledges that people with conditions impacting their immune system have concerns. Such conditions are what the Machado abstract was focused on. What about chronic pain? From the 2019/2020 NZ Health Survey it was estimated that 19.6% of New Zealand adults (where I’m writing from) experience chronic pain. That is 785,000 people. There will be others with similar questions and concerns about how the vaccination will impact their day-to-day lives. Living with any chronic illness requires balancing the various aspects of life carefully. It is not wrong or silly to be worried about upsetting this balance.

The second quote describes the 5% “disease flares” and 1.2% “severe flares” as non-serious and short term. I’m sure, based on the definitions the researchers were using, that this is accurate. However, for the people experiencing these flare-ups there would have been disruption not captured by percent categorisations.

Understanding and acknowledgement of concerns of flare-ups in chronic pain and other chronic conditions may help more people to feel comfortable to get the Covid-19 vaccination. Part of the reason my concerns were outweighed by the positive outcomes of vaccination is because I know I can take time off from work if I need to and I don’t have any one who is relying on me for care. Many people with chronic pain will not be able to take time off work and/or will have people who rely on them.

If you are in a position to help someone with chronic pain if they need it after vaccination then please do. If, in the unlikely chance, that someone reading Pinches of Pain is in Government, please consider what you could do to acknowledge concerns and in terms of policies around leave and support for people who have flare-ups in their chronic pain* when getting the Covid-19 vaccination.

If you are reading this pinch and have an experience you feel comfortable sharing, please post in the comments.

It’s now 7.30pm and I think this is all I can write today. I did want to capture my reflections on having the Covid-19 vaccinations today though, while I’m still feeling the associated fatigue and pain.

*actually anyone, as anyone can experience side-effects.

1. Machado P. M., et al. (2021). LB0002 COVID-19 vaccine safety in patients with rheumatic and musculoskeletal disease. Annals of the Rheumatic Diseases 2021, 80, 199-200.

Student guest post: Emily McCarthy

Earlier in the year I was interviewed by a student, Emily McCarthy, writing a creative non-fiction piece on pain management. Emily interviewed me about my lived experience of managing pain as well as research I have contributed to.

Emily also interviewed Toby Hall a clinician with extensive experience helping people to manage their pain.

I’m so glad Emily wrote this piece. I think Emily gives insight into the complexities of living with, and helping to support people with, pain. Emily has kindly said I could share her work here.

When pain persists – Emily McCarthy                                                                                                                                   

One in five New Zealanders live with chronic pain. Having never experienced persistent pain herself, Emily, a student at Victoria University, went on a journey to understand chronic pain and how it is managed in Aotearoa.

I recently flew over the handlebars of my mountain bike and gashed my knee – deep. The pain kicked in when I made it back to my car. I flushed the wound with saline, pulled the flesh together with butterfly tape, wrapped it in a bandage. Pain protects. 

For the next week, it hurt to put pressure on my knee. My gash made me hobble, favouring my left leg while resting my right. The edges of the wound grew towards each other. Pain heals.

When I went biking again the following fortnight, I slowed down on that gnarly corner, made it round unscathed. Pain teaches.

The pain was transient. And it was helpful, my body and brain’s way of working as a team to tell me to clean my wound, to take it easy while I healed, to teach me a lesson about risky activities.

That’s what pain is meant to do, and it’s great when that’s where it stops. But sometimes pain goes overboard. It lasts for months, sometimes in the absence of tissue damage or threats. Pain persists.

“Pain is really good,” Dr Hazel Godfrey told me. Hazel is an academic who researches pain. “It’s just that when it goes wrong it’s really awful for the person and their family.” Hazel’s insights come from two places – her academic research and her lived experience. Hazel has fibromyalgia.

There are a multitude of pathways to persistent pain. Changes in the brain, lasting tissue damage, aberrations in the way the mind and body communicate with each other – all can cause chronic pain.

Hazel was diagnosed with fibromyalgia in her first year of university. “I just started getting tired – abnormally tired – and sore all over.” Her pain made it hard to think, hard to sit for long periods of time, hard to operate as she’d been used to. It intruded. Hazel’s experience fit the description of fibromyalgia – fatigue, widespread muscle and joint pain, pressure-induced pain at specific trigger points, and no explanatory cause.

Sometimes pain makes no sense – a 2012 survey found that doctors were unable to identify the source of chronic pain in one in ten patients. But even without a diagnosis, the pain is very real.

Hazel is one of 763,000 New Zealand adults living with chronic pain – that’s one in every five. And with population aging, she’ll be joined by more kiwis each year – persistent pain disproportionately affects older people. 

Pain takes a toll. People who live with pain can find it hard to sleep, maintain relationships, keep jobs, do their groceries. Pain can be debilitating. At its worst, Hazel’s pain left her effectively bedridden for a year.

On top of the physical effects of pain, people living with chronic pain often experience anxiety, depression, and other mental health challenges. Knowing what it’s like to live with pain, Hazel described the associated mental health challenges as “not surprising.” Chronic pain is pervasive.

The impacts of pain go beyond the individual. The estimated financial costs of chronic pain in Aotearoa reached up to $5.3 billion in 2016, with lost productivity being the most significant contributor. If you attempt to put a dollar figure on the loss of wellbeing experienced by people living with persistent pain, the total cost approaches $15 billion each year – more than two times the GDP of Fiji.  

So what solutions are available for people living with chronic pain? Well, there are no silver bullets – managing pain is a science and an art.

Toby Hall, a chiropractor at the Featherston Street Pain Clinic, certainly views it that way. He describes himself as a mechanic, a mechanic with intuition, the ability to listen and empathise, observe and understand. “Pain links up to a person’s inner self,” Toby told me. It can’t be diagnosed with a blood test or seen under a microscope. It can’t be cured with a pill. “It’s a very subjective part of life.”

Depending on the person, the prescription differs. But for Toby, movement is at the core. “Movement is medicine.” Gone are the days of recommending bedrest and neck braces. To manage pain, you must move.

Toby encourages his patients to adhere to his prescribed movements like a dentist tells you to brush your teeth. “I teach people really simple exercises but I try to get them to do those exercises for five minutes a day everyday forever.”

When I asked Hazel how she manages her pain, she told me that it’s like a fulltime job. To live her life well with pain, Hazel has to stretch, go for walks, use a foam roller. She has to eat healthy, stay connected to her support network, rest. Frankly, these sound like great tips for all of us. But for Hazel, they’re non-negotiable – pain will exploit any lapse in vigilance. “I’m hyper-organised,” Hazel told me, “I have two diaries.”

Medication also plays a role. There are issues – Toby mentions the US opioid crisis and Hazel mentions the prohibitive cost of cannabidiol in Aotearoa – but some things work for some people. Researchers are hunting for new medicines for pain management that aren’t addictive – but it’s a long hunt and only part of the puzzle.

When I asked Hazel whether there were any developments in pain management on the horizon that she was optimistic about, she burst my bubble instantly. “Sadly no.” Part of Hazel’s pain management journey has been coming to terms with the reality that there is no simple cure. She doesn’t expect that she’ll ever get to live free from pain, but over time she has come to accept that she can live a good life with pain. “But it’s always complicated, and sometimes I still get very frustrated.”

Something Hazel was very clear about is the fact that pain doesn’t exist in a vacuum. “The person in pain doesn’t exist apart from the world.”

For her pain management strategies to work, Hazel needs the support of her family, friends, and workplace. “If you’re working towards these things on your own it’s not very likely to succeed.”

Hazel’s friends and family are crucial to her wellbeing. “They…remind me when I’m having a bad time that it does ease, it’s just that it’s hard to see…in that moment.”

And her workplace knows about her fibromyalgia. She views telling them as essential: flexible working arrangements enable her to manage her pain while being active in the workforce.

Talking about her pain isn’t just about getting the support she needs for herself. Hazel also sees it as a way to heighten understanding of the prevalence of the issue, bust through stigma, and provide a supportive community for others living with pain. Acknowledging the presence and impacts of chronic pain in Aotearoa, making the invisible visible, can go a long way.

Toby and Hazel’s approaches to pain management – movement, support networks, persistence, the involvement of allied health professions, and a focus on the body and brain – are evidence‑based. But good chronic pain care isn’t always easy to access.

Waitlists for pain management programmes in Aotearoa are months long. Hazel’s helping with research into online tools for pain management, but acknowledges that in-person care remains critical. Getting really sick seems to be one of the best ways to reduce your wait time. “I was so unwell it meant I got fast tracked,” Hazel told me as she reflected on her referral to a 12-week pain management programme. 

In 2018, Aotearoa had an estimated 11 fulltime pain medicine specialists. Based on international recommendations, that’s less than a quarter of what we should have.

We don’t have a national pain management strategy, while similar countries – like Australia – do. And funding for pain management is often threatened.

“Because it doesn’t kill you directly it doesn’t get the money,” Hazel said bluntly.

Every now and then I run my thumb over the mountain biking scar on my knee. The skin is puckered and purple but the pain is long gone. I’m lucky. For me, pain protects, heals, and teaches. But for too many kiwis, pain persists.

For something that costs so much – personally, nationally – it seems like Aotearoa has plenty of room for improvement.

(This blog was written as part of an assignment in a Victoria University Science Communication paper – more details here. Hazel coordinates and lectures for a Vic Uni paper called Science in Every Day Life, which has a module on pain – more details here.)

Nothing about us without us

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.”

The NZPS has very kindly made this webinar available for anyone to watch. Scroll down at the link to see the description of the webinar and the direct link to the recording.

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.

A four panel cartoon of a dinosaur. In each panel, the dinosaur looks the same. However, a different heading is above each of the four dinosaurs: "dinosaur", "depressed dinosaur", "ill dinosaur", "disabled dinosaur".
From @dinosandcomics on Instagram.

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.

Chronic mess?

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:

  • Amitriptyline
  • Nortriptyline
  • Other anti-depressants/drugs originally developed as antidepressants
  • Citalopram
  • Paracetemol
  • Ibuprofen
  • Diclofenac
  • Codeine
  • Saline injections
  • Saunas
  • Chiropractor
  • Bowen therapy
  • Massage
  • MELT method (stretching with using a foam roller)
  • Ultrasound
  • Acupuncture
  • Physiotherapy
  • Magnesium
  • Vitamin D
  • Numerous other supplements
  • CBD oil
  • Reflexology
  • Shakti mat

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!

Doing research on pain

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.

Research question

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.

My broad research question was “why does pain make it hard to think?“. This question was first planted in my mind in the pain management programme I attended. It is a huge and complicated question, and not something that’s going to be answered with one experiment! My narrower research question about the mind in pain, was “what role does attention play in the difficulties in thinking people with chronic pain report?“.

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).

Testable predictions

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).

Example of a display with a distracting image. Participants were required to ignore the image and respond (with a key press) as to whether a K or and N was present as quickly and as accurately as possible. Participants did this task 192 times to give us a stable estimate of response times for the different image types. For copyright reasons, an example of an image used in the experiment can not be shared. This image was retrieved from http://janetroper.com/dancing-with-your-intuition/on 17 August 2016

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.

Infographic representing the research process as described in text.
Infographic summarising the research process.

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.

1. Godfrey, H. K. (2017). A role for attentional bias in cognitive deficits in chronic pain? [Doctoral thesis, Victoria University of Wellington]. http://researcharchive.vuw.ac.nz/handle/10063/6814

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 Science8(6), 1046-1053. https://doi.org/10.1177/2167702620925744

My brain closet is full

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.

What I imagine my brain looks like on a good day. Everything is organised, easy to find and retrieve. Photo by Андрей Постовой on Unsplash
On a bad day, my brain is overfull to spilling, like these coffee beans. Nothing is in the right place and I can’t find what I need.

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.

[1] I’ve been doing a lot of marking the last few weeks. I’m assigning grades to everything!

Thoughts (3) – the b word

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):

A series of circles within each other. An inner circle with "my pain" surrounded by "sensory", "affective", "cognitive", and "behavioural". The next circle surrounding the inner circle, has "friends", "family", "work". The next circle has "health professoinals" straddling the boundary, and "Wellington" and "Local community" within. The widest circle, "New Zealand" has "Governmental policy, e.g., policies for supporting people with chronic illness" and "Cultural norms regarding pain experience, e.g., gender biases, sharing or hiding pain".
Here’s a simplified biopsychosocial representation of my pain experience in context.

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

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1183496/ : “Chronic diseases impose an enormous financial and societal burden on the United States”; http://www.ahdbonline.com/articles/2003-socioeconomic-burden-of-chronic-pain : “Chronic pain is a debilitating condition that is associated with significant medical, emotional, and economic burdens.”
  2. 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

Sad, not happy

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.

A series of circles within each other. An inner circle with "my pain" surrounded by "sensory", "affective", "cognitive", and "behavioural". The next circle surrounding the inner circle, has "friends", "family", "work". The next circle has "health professoinals" straddling the boundary, and "Wellington" and "Local community" within. The widest circle, "New Zealand" has "Governmental policy, e.g., policies for supporting people with chronic illness" and "Cultural norms regarding pain experience, e.g., gender biases, sharing or hiding pain".
Here’s a simplified biopsychosocial representation of my pain experience in context.

To explore the importance of considering chronic pain in a biopsychosocial context start with the articles the Biopsychosocial Model Helps Explain Complex Differences in Pain and The Experience of Chronic Pain: Many Dimensions, Lots of Uniqueness.

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.

[1] Some biopsychosocial models have three dimensions.

  1. 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.

Hiding pain

This pinch sets up my next two pinches.

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.

Thoughts (2)

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 practice/meditation

“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.

1. Minding mindfulness – what is going on? https://relief.news/mindfulness-breathing-pain-and-fibromyalgia/

2. Does mindfulness improve outcomes in chronic pain patients? https://relief.news/pain-mindfulness/

If you’re interested in learning more about mindfulness practice/meditation for self-management of pain, this page is a great place to start.