Pain as a Narrative Rather than a Number
My patient sits in front on me with a swollen knee. As they stand up, I ask them how their knee feels. They say, “it doesn’t really hurt, it just feels yucky.” As a physical therapist with a focus on hypermobility and neurodivergence, I have found my patients’ pain experiences are more a description, or even a narrative, than a score out of 10.
Sometimes a patient reports “yucky,” sometimes “crumbly,” and sometimes “it just feels out of place.”
What is a feeling? How do you feel the sensations you feel? The word we use to describe our ability to feel what is happening in our bodies is interoception. While we all experience sensations in our own unique way, sensations that diverge from the norm may be more of a challenge for hypermobile and neurodivergent people.
How does interoception work?
Am I hungry or thirsty? Am I cold or hot? Is the pain coming from here or there? These are the questions your interoception tries to answer.
Sometimes it is easy for your interoception to identify what is happening, but sometimes it is not. For example, for most people, it is easy to identify the location of a broken bone. In other words, a broken bone is an easy job for your interoception.
By contrast, identifying a heart attack may be difficult. Some people feel a heart attack as a tightness in their chest, others as pain in their left arm, while others may feel upper back pain. My mother was working with a cardiologist while he was having a heart attack and all he felt was fatigue. Ironically, the heart doctor didn’t realise he was having a heart attack (don’t worry, he ended up figuring it out and was fine). My point is, different people can feel the same medical condition differently and some parts of your body can’t express pain clearly.
What bodily sensations you experience, or your interoception, is the result of how your brain interprets the signals that your body is sending it. In the case of a broken bone, bone tissue has a lot of damage detectors (nociceptors) with a clear path to tell your brain the bone has been damaged.[1]
In the case of a heart attack, your heart does not have as many damage detectors, nor as clear a path to tell your brain your heart muscle is being damaged.[2] Therefore, the signals from your heart can get misinterpreted as coming from your left arm or from your back. This phenomenon of referred symptoms occurs through a process called convergence, which I discuss in my blog post, Is My Neck Tension Causing My Head Pain and Dizziness?
The other complication with a heart attack would be that your brain is not only receiving signals from your damage detectors, it would also be receiving signals from all over your body telling your brain that there is not enough oxygen getting delivered. So, the cardiologist’s brain was not so silly to decide fatigue was an appropriate sensation, as a lack of oxygen leads to a lack of energy production and therefore a need to rest.
Is interoception different in hypermobile and neurodivergent people?
If your interoception is your brain interpreting signals from your body, and hypermobile and neurodivergent people have different bodies and different brains, does this mean you have different interoception?
The answer to this question is a bit complicated because interoception involves different components. There is how sensitive your interceptive system is, how accurate your interoceptive system is, how aware you are of sensations, and then your subjective interpretation of those feelings.[3]
All these components can be different in hypermobile and neurodivergent people. For example, feedback to your brain from your blood vessels, lungs, and joints depends on “stretch receptors” being stretched, and stretchy bodies need to stretch further before these receptors get triggered. Therefore, your brain may receive less accurate signals from your stretchy body. However, neurodivergent people can also have high sensory sensitivity in other ways.[3] Further, neurodivergent people can have poor awareness of interoception.[3] So, my takeaway is that your body may not be clearly communicating with your brain and your brain may be misinterpreting your body. Therefore, when it comes to interpreting how you feel, some analysis may be in order.
Pain as a Narrative
Let’s dive in to how you might analyze your sensations.
The 0-10 pain scale, zero being no pain and 10 being the worst pain imaginable, has long been a contentious issue in physical therapy, and perhaps medicine in general. In my opinion, the questionable value of the 0-10 pain scale has been most aptly discussed in an article written by an English professor, Ann Jurecic. Jurecic highlights that the pain scale has no basis in shared experience and does not account for where your experience of intensity ends and your tolerance in a given moment begins.[4] To Jurecic’s point, my patients often tell me, “I have a high pain tolerance, my 4/10 would probably be someone else’s 8/10.” And indeed, it probably would be.
So, if a pain score out of 10 doesn’t accurately reflect your experience, what other options do you have?
A simple way to analyze your discomfort is to describe your sensation and then reflect on how negative your description is. For example, you don’t want a “yucky” knee, a “crumbly” neck, “tight” hamstrings, or an “out of place” shoulder, so your description would be negative. If the description is negative, think of it as a version of pain.
Another option is to use a bothersomeness score. Researchers have found that when you switch up the word “pain” with the word “bothersome,” you more accurately capture a measure of the combination of pain intensity, pain interference, and pain-related distress, and that this measure is more closely correlated with rehabilitation success.[5]
Thinking of pain as a narrative can help us figure out what is wrong
By thinking of the negative description as a version of pain, rather than interpreting the sensation in its most literal sense, we can analyze the discomfort behaviour through a less bias lens and therefore create a more accurate understanding of the problem.
I’ll give you some examples.
My left chest pain
For years I would randomly feel this sharp pain in my left chest. It would force me to clutch at my chest and grimace. It felt like my heart was cramping. I figured it was just a heart spasm, so I would rest and take slow breaths. The pain would come in waves for a while, but would always go away. I never felt this pain with exercise and never felt short of breath with this pain, so I wasn’t too worried about a heart attack.
It wasn’t until well into adulthood that I realised this pain always followed lying down after eating. I then realised it was “heartburn” due to reflux. I stopped lying down after eating, and I don’t get this left chest pain any more. By assuming that because the pain was coming from the region of my heart that it was my heart, I miss-read the warning messages for years.
Tight hamstrings
It is very common for a patient to sit across from me and tell me, “My hamstring muscle feels tight just sitting here.” They then typically tell me, “I have been stretching it for weeks, but the tightness will not go away.” If we look at the “tightness” as pain and observe that it is not related to a lack of flexibility, we can analyze what is causing this pain through a broader lens than if we assume it is just a tight muscle.
In most of these cases, the “tightness” ends up being a form of “sciatica” or referred from the lower back. This has certainly been the case for me on a number of occasions. It is ironic that our interpretation of our danger signals being “tightness” often leads to overstretching and provoking the problem. The human experience can be so counterintuitive.
My shoulder is out of place
It is also common for me to hear that after a patient has experienced a shoulder injury, the shoulder continues to feel out of place or like it is hanging part way out of the socket. While this could certainly be true, in most cases when we look at the shoulder, the shoulder although feeling out of place is presently sitting in place and the sensation is a form of pain due to injury rather than the shoulder literally sitting part way out.
Pain as a narrative can help guide physical activity
If you think of an uncomfortable sensation as a sign that you are doing something that sets off warning bells, then you can use this sensation as a mark of when exercise is starting to become too much. This is not to say that because you feel a negative sensation you have damaged yourself, it is simply flagging that this is the point where more warning signals are being sent.
I regularly tell my patients that they should aim to accumulate as many experiences that prove physical safety as possible. In my experience, understanding the warnings and avoiding a flare-up can be critical to a person’s recovery.
Let’s look at how we might apply sensation analysis to an example of walking related discomfort. If you are trying to decide if you should cut your walk short because of how you feel or if you should push through, simply ask yourself, “is this feeling negative?” and “how bothersome is this feeling?”
If you decide the feeling is negative, for example, “tightness” in your hip, you can then answer the bothersomeness question in one of two ways. One option is a bothersome score out of 10, where 0 is not at all bothersome and 10 is extremely bothersome. Another option is to rate your bothersomeness as, “not at all,” “slightly,” “moderately,” “very Much,” or “extremely.” If your answer is more than “3/10” or more than “slightly,” then perhaps it is time to take a break. Monitor the hip tightness for 24 hours after the walk and see if the tightness is worse than usual. If the tightness is no worse, for your next walk continue for 10-20% longer and repeat the analysis. This way you can tell if you tightness was an early warning or was an unclear version of pain due to too much, too soon.
The Take-Away
Pain is not a straight line; it is a network. By suggesting you should simplify your pain experience I do not intend to minimise your experience. Rather, I hope to present an alternative way to interpret the narrative of your lived experience in the hopes it offers you a helpful understanding and perhaps even a path forward.
- Zhen, G., Fu, Y., Zhang, C. et al. Mechanisms of bone pain: Progress in research from bench to bedside. Bone Res 10, 44 (2022). https://doi.org/10.1038/s41413-022-00217-w
- Pan, H. L., & Chen, S. R. (2004). Sensing tissue ischemia: another new function for capsaicin receptors?. Circulation, 110(13), 1826–1831. https://doi.org/10.1161/01.CIR.0000142618.20278.7A
- Greenwood, B. M., & Garfinkel, S. N. (2025). Interoceptive Mechanisms and Emotional Processing. Annual review of psychology, 76(1), 59–86. https://doi.org/10.1146/annurev-psych-020924-125202
- Jurecic A. (2018). A literary pain scale. Lancet (London, England), 391(10116), 111. https://doi.org/10.1016/S0140-6736(18)30022-9
- Edwards, K. A., You, D. S., Lannon, E. W., Dildine, T. C., Darnall, B. D., & Mackey, S. C. (2025). Beyond pain intensity: Validating single-item pain bothersomeness measures. The journal of pain, 31, 105395. https://doi.org/10.1016/j.jpain.2025.105395
