Looking back, frustration was the emotion I felt the most strongly after an injury left me with chronic pain. It seems to come up for a lot of people.
I wanted to talk in this post about the underlying causes of chronic pain frustration.
The reasons for frustration can be different for different people with chronic pain, depending on their individual circumstances and their experience of how pain affects them.
In this post I’ll go into more detail about some of the underlying causes of chronic pain frustration, and offer some suggestions on how to deal with aspects of frustration when you are living with persistent pain.
Firstly, we all understand how frustration can feel, but how is it defined?
“The feeling of being upset or annoyed as a result of being unable to change or achieve something.”
(Dow, Roche & Ziebland, 2012)
Researchers in 2012 interviewed people with chronic pain to understand their sources of frustration. I could relate to all of them, to varying degrees. Here are a few of the underlying causes of chronic pain frustration.
1. Hinderance of everyday activities
Chronic pain can limit people physically and can affect their ability to carry out many of their everyday activities.
Researchers in 2005 discovered that frustration rated higher than other emotions like depression, fear, anger and anxiety in people with chronic pain.
People who were now unemployed due their pain reported feeling frustrated more than those who were in full-time or part-time employment.
It can be extremely frustrating when chronic pain seems like an obstacle in the path of being able to engage in activities that you previously found meaningful.
Activity pacing is a pain management strategy that I use all of the time, in order to be able to carry out everyday activities.
I took some time to really work out how long I could manage to do an activity for, before needing to rest to prevent increasing the pain to intolerable levels.
Once I figured out my limits, I plan activities and rest periods and try my best to stick to them.
Learning to pace activities can be frustrating in itself, in the beginning. It can seem ‘unnatural’ to leave a task unfinished in order to rest, since I wasn’t used to doing so.
I found that my thoughts and beliefs got in the way of me being able to successfully pace activities at first. Those sayings we hear can really get under your skin.
For example, “If a job’s worth doing, it’s worth doing well.” For the longest time, I struggled with walking away from a task while it was incomplete.
But as I practiced activity pacing more and more, I realized that I could still do jobs well – it just takes a lot longer to complete things.
I try not to let myself become frustrated with this, and try to just accept that if I want to complete something without causing a severe pain flare, I need to take longer. I break tasks into smaller segments and intersperse them with rest periods.
By adapting my behavior, I managed to overcome this source of frustration. I still feel frustration at times over this, but the feeling is nowhere as intense as it had been before.
But it was more than just frustration over having limited ability to do tasks, it was a deeper sense of frustration over how that affected my sense of who I was, and my sense of direction in life.
2. Interference with life goals
Not having a sense of purpose in your life was related to feelings of boredom in people with chronic pain, which I talk more about in my post on boredom and chronic pain link
It’s understandable that this also leads to feelings of frustration.
“Persistent interference of a person’s behavioral repertoire has a negative impact on their identity.”
(Dow, Roche & Ziebland, 2012)
It’s hard to describe just how intensely frustrating it can be, when you still feel capable in your mind – which can imagine endless of possibilities – yet the persistent pain in your body seems to limit what you can physically achieve.
A further frustration around this for me, was the time and effort I’d put into educational achievement, only to feel like my pain was preventing me from putting everything I learned into action.
Feeling physically, socially and psychologically restrained seems to have a lot to do why people with chronic pain feel frustrated.
At some point we just come to realize that you’ve to work with what you’ve got and imagine new ways of adapting and adjusting life goals.
3. Unpredictability of pain
Something that seems to frustrate many people with chronic pain, is the unpredictability of the pain. I felt this sense of frustration especially early on in my pain journey.
One of the most frustrating things about it, is that the unpredictable nature of the pain means there are times when you have to alter plans in order to rest.
This can lead to misunderstanding with others, as people who don’t live with chronic pain can sometimes struggle to understand it.
I was fortunate to have been able to make things more predictable, after spending a lot of time learning what my physical limits were, and pacing activities.
Though I understand that everyone has different experiences of their pain condition, and for many, their pain can always worsen more unpredictably.
What helped for me when I felt frustrated over the unpredictability of the pain, was to try to change my perspective a little.
The reason I’d personally felt the unpredictability of the pain so frustrating, was because I didn’t like letting anyone down if I’ve been expected to be somewhere.
I had to change the way I viewed it, to realize that I was doing what I had to do in that moment to take care of myself, as I would expect anyone else to do in the circumstances, and that self-care wasn’t selfish.
It took some persistence to think differently about the situation, but it did help ease my frustration about the unpredictability of pain.
4. Not being able to ‘kill’ pain
Not finding a treatment that can actually ‘kill’ the pain or take it away completely can be a major source of frustration for people with chronic pain.
“Frustration results from repeated attempts to solve unsolvable pain.”
(Dow, Roche & Ziebland, 2012)
It takes time to come to terms with the fact that for many people with chronic pain, they won’t find a single perfect solution to the pain.
It feels hard to accept.
Oftentimes people try out a variety of different medical procedures and medication to help the pain. It can be tough when you get your hopes up and they’re repeatedly dashed.
Eventually after many years of trial and error, I found a combination of medical treatments that help control my pain somewhat.
I think the bigger thing for me was that I eventually came to accept that I was going to live with chronic pain.
Then the frustration over not being able to kill pain faded into the background – the frustration is still there, but very faint.
5. The invisibility of chronic pain
The fact that pain can be felt but not seen by others can be another source of frustration for people with chronic pain.
Other people can sometimes make assumptions, because the pain is invisible. They think you ‘look fine’, and because they can’t see anything wrong, there can’t be anything wrong.
It can seem difficult to get other people to understand. It can be hard to know how to describe pain to others.
This aspect of the pain, and how it can interfere with how we relate to others can cause a lot of frustration.
You may also like my post with suggestions around explaining and describing chronic pain to others.
The invisibility of pain can make it frustrating when trying to communicate with healthcare professionals.
Many people struggle for a long time to get a diagnosis. Without a diagnosis, it can be hard to adjust to life with the persistent pain.
People can become extremely frustrated, having to prove that their ‘invisible’ pain actually exists.
“People with pain [are] trapped ‘in the system’ (medical, social security and legal system), which although it has been designed to support and treat them actually leaves them powerless, frustrated and angry.” (Dow, Roche & Ziebland, 2012)
We often have to become advocates, for this reason. I can help to have the support of others who really understand. Chronic pain support groups are helpful in the sense that your pain becomes validated. You can see that pain in the face of others, they can empathize.
That can take away a lot of the frustration around the invisibility aspect of the pain.
These are just a few examples of some the sources of frustration for people with chronic pain. You might experience all or any combination of them, or others. You might also find that they build up over time, compounding each other.
People generally settle on a mixture of acceptance of some frustrating things, and shifting their perspective on other frustrations, as we come to terms with all the changes and losses.
It gets easier.
References
Dow, C. M., Roche, P. A., & Ziebland, S. (2012). Talk of frustration in the narratives of people with chronic pain. Chronic Illness, 8(3):176-191.
Vickers, E. R., & Boocock, H. (2005). Chronic orofacial pain is associated with psychological morbidity and negative personality changes: a comparison to the general population. Aust Dent J, 2: 21–30. 5.