After living with chronic pain for the last nine years, I've found there is a lot of misconceptions when it comes to understanding chronic, rather than acute, pain. So here are ten things I wish family, friends and health professionals would know about chronic pain.
1. Not every day is the same but every pain we are in pain.
Able-bodied people can find it difficult to understand how chronic pain can differ so much from day to day - from degree of pain, to kind of pain, to the area of pain. Many conditions are multi-systemic and thus inflammation can migrate throughout the weeks, sometimes hour to hour. Our pain can also be heavily based on how much stress we have put on our bodies that day, or the days prior. Irregardless, we all carry a baseline level of pain that we expect to wake up with each morning.
2. We can hide our pain really well.
Imagine being in pain 24/7/365. You would probably get used to hiding it pretty well too! Just because we are not screaming in agony does not mean we are not in pain.
3. We may be used to pain but that doesn’t make it any easier.
People adapt to a new "normal" all the time - it doesn't mean that it isn't hard or that the pain doesn't affect us greatly.
4. Just because we are smiling or having fun doesn’t mean we are not in pain.
We deserve to enjoy life as much as the next person and sometimes that means putting aside our pain as well as we can in order to participate in an activity that brings us joy, even if it will cost us later on in the price of payback.
5. When we mention our pain it must be really bad.
Believe or not, we don't actually mention our pain as much as people think we do. For something that affects us every minute of the day, we actually mention it quite rarely.
6. Chronic pain is unalike acute pain. Living with pain day in, day out is a very different experience.
I think the medical world has an accurate grasp on acute pain as it is something we have all experienced and often there is an immediate reason and treatment for this type of pain. This differs dramatically when talking about chronic types of pain. There is a lot of compassion fatigue when it comes to chronic pain patients as I believe abled people quite often struggle to understand, or truly do not want to understand, this experience.
7. The intense pain that can send an abled person to the ER can be a normal high pain day for us.
Our flare ups can be brutal and most abled people who would experience this as an acute episode would probably present to the ER. Conversely, those with chronic pain usually try to simply wait it out, hoping that the storm will pass, and that we will return to our baseline level of pain soon.
8. It’s very difficult for people without chronic pain to understand our reality.
Before I became so unwell, there's no way I could've truly comprehended the level of chronic pain people can experience daily. It is rather unfathomable from the outside looking in.
9. We are incredibly good at pushing through our pain but this often makes things worse.
Thanks for this one, adrenaline! Pushing through pain and fatigue can be incredibly useful when we have no other choice but unfortunately it usually results in a flare up down the track.
10. We often don’t feel safe in our own bodies.
To not feel safe in your own body is one of the worst feelings. To never know what onslaught of symptoms are approaching or what the day has in store for you is extremely unsettling.
We need A LOT more empathy and understanding when it comes to chronic pain patients and that should involve first and foremost listening to the experience of the patient.
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