Six Advices We Wish We Knew Earlier In A Journey With Chronic Pain (with 20 journals prompt ideas!)

My husband has been diagnosed with a condition called chronic relapsing inflammatory optic neuropathy. In short, it’s called CRION. Not a very common condition

The usual symptoms are vision loss and pain. To be specific chronic pain

The vision part is mainly controlled by immunosuppressant agents, whereas the pain management relies heavily on pain killers. A lot of pain killer.

The thing with painkillers is the side effects. From mild drowsiness to vomiting. You named it; he experiences it all

So currently, he’s been on medication for almost 4 years now. Just imagine 4 years of daily dosage of pain killers on top of the other medication

That’s when I thought, enough is enough. There should be other ways he can approach this endless battle with pain.

So last weekend I introduce him to my psychology professor whose research is mainly on chronic pain management.

We discuss a lot but the thing that caught my attention is the idea of approaching pain management from a psychology perspective along with other medical interventions.

What is interesting is that she explains that pain has an emotional aspect, which is the part of the pain.

The emotional aspect can be anger, frustration, rage, or anything depending on the patient. So, this emotional aspect can perpetuate and aggravate the pain so and so the pain perceived by the patient felt worse than before

This article shares the same info given by the psychologist we met. A few interesting studies have been highlighted in the articles, which includes

Uncontrolled anger affects physical health and causes more pain by exacerbating the inflammation (increased in inflammatory marker)
Anger not only become the predisposing factor but cause be the important factor to exacerbate and precipitate the pain
In chronic pain individuals, the degree of anger is directly related to muscle tension, severity, and pain behaviour.

That’s the issue faced by my husband. The pain causes him to feel anger. The more pain he felt, the angrier he became.

Disclaimer: This article is intended to share our personal experience and not to be taken as sole advice for chronic pain management. Please discuss with your doctor or psychologist for individual assessment.

Table of Contents

The Advice We Received

“You cannot control the pain, but you can control how you react to the pain.”

This is probably the best advice I have heard throughout the session. The main reason we met the psychologist is that he needs to learn to live with the pain. We need a holistic approach to managing the pain as it already becomes part of him.

Rather than running away or opposing the pain, he advised making peace with it. And learn how to control it

1. Detach any emotional feeling to the pain

When we discussed the management of pain from a psychology point of view, the first piece of advice she gave is to detach any emotional feelings from the pain.

Instead of the usual association of pain with anger & rage, she advises viewing pain as simple as something that contains no meaning. No association with feeling whatsoever. Pain basically just pain

By closing our eyes and try to view the pain as the 3rd party. And just see how the pain reacts. She asks to describe the pain, the physical part of the pain.

What is the shape

What is the colour

Is it static or moving?

During this exercise, he was unable to visualize the pain yet, but yeah this requires practice

2. The self-awareness controls

The second thing she highlighted is that to be more mindful and aware of the pain. The self-awareness control. By being aware, we are able to catch the feeling association (like in this case, anger) and do the necessary intervention.

She advises that when we realize that the pain is about to come or if we are experiencing the pain, ask a simple question to ourselves

Why do we feel the pain now?

What may cause the pain, what is the trigger?

How should I react to the pain?

Can I control how long I feel the pain this time?

3. Deep breathing & muscle relaxation technique

The first 2 steps should be done along with the deep breathing and muscle relaxation technique and the key to deep breathing is to breathe using the diaphragm which is the muscle beneath the thorax.

Andrew Huberman, a Stanford Neuroscientist associates the breathing exercise with the ability to control the mind by influencing the heart rate.

When we inhale, the diaphragm is pushed down, the heart becomes slightly bigger, and the blood will move slightly slower which send the signal to the brain to increase the heart rate. The increased heart rate makes us feel more alert.

The opposite happens when we do longer more extended exhale. The diaphragm will push up and this will slow down the heart rate.

This fluctuation is called the heart rate variability reflects the activation of the parasympathetic nervous system which is the ability of the brain to slow down and calm the nervous system

When we are on the verge of feeling that agitation due to pain and want to be more thoughtful and more targeted to our response, the key is to slow down the heart rate by exhaling longer.

If we want to be more alert and focused, do the extended and vigorous inhalation instead.

“So, when your mind is not where isn’t where you want it to be don’t start with the mind. Start with your breathing to control the heart rate.”

4. Appreciate people around you

One thing the psychologist reminds us of is that chronic pain patients often lose sight that the stress they feel due to pain will affect the people surrounding them as well. The partner, the son, the people that are living with them. Appreciate them.

Rather than pushing them away and suffering from the pain alone, talk to them and work together. Sometimes miscommunication leads to various fallacies in chronic pain patient and their family.

5. Listen to other chronic pain patients’ experiences on how they cope with living with the pain

This will give the perspective that you’re not alone and people can live with the pain, though not completely pain-free but living life as it is.

6. Physical activities

Physical activities may help with pain control. Additionally, exercise can help to channel the negative emotion of pain to a more positive outlook and stabilize mood.

Journaling For Chronic Pain

When I understand that self-awareness is one of the important components of psychological management of chronic pain, I immediately think, Aha! Journaling

So, when I throw the idea of starting a pain journal to help him with the emotional control of the pain, he immediately laughs at the idea of it. He thinks its funny and will not work

What am I supposed to write?

It sounds so girlish

I don’t think journaling my pain will help me with it. Pain killer does.

Well, I don’t blame him though, majority of people are sceptical about the idea of journaling for chronic pain. For mental health related issue, yes, but not for chronic pain

So, I challenge him to do journaling for 30 days, specifically a pain journaling for chronic pain and we’ll see what the outcome is he can get from this exercise.

Since he has no idea what journaling is, what to write in the journal, I will prepare the journal prompts with the idea that he can use throughout this challenge. He said journaling is ‘corny’ so the prompts I create are mainly straight-forward type to suit more of his personality so he can journal every single day for 30 days.

On a scale of 1-10, how I would like to rate my pain score. Why do I feel more/less pain compared to yesterday?
I will try to visualize again the pain: what is the shape, colour, character of the pain. Should I name him Dick, you know because he is one?
How should I react to this pain?
Can I control the pain? If yes, how? What should I do about it?
Do I feel more tired because of the pain or it’s because I don’t move much because of the pain?
How I can recharge my body if I feel tired because of the pain
Did pain affect me mentally?
Am I being compassionate enough with myself when I’m in pain?
Do I ever feel silent by the pain (insert gif silent or silence Oprah)
What small habit I can start to feel better when I’m in pain (aside from the painkiller)
What activities I can do to help express my anger in a healthy way when I’m in pain
Draw how the pain looks like if it is a person
Create a flow-chart action plan of what I want to do to cope with pain
If my family member has the same condition, what I will advise them
How I should tell people that I need their understanding when I have my flare-up
List the destination that I want to go to once my pain and disease get in control
How to be nice (any not yelling to anyone) despite being in pain
What podcast should I listen to, to help me with this process
What emotion usually attach to my pain, and how to let go of it
How I see myself in the next 5 years living with the pain. Will I move towards my goal or the opposite if I live continuously like this?

I hope you can find some valuable information from this article

If you’re currently facing your own chronic pain with or without any mental health challenges, please know that you’re not alone.

Best of luck!