Correcting the record – Why people who live with chronic pain stop doing the things they love

Spoiler: It’s NOT because I am afraid of pain

The myth that has been sold to health care professionals, mostly physiotherapists, is that people who live with chronic pain become isolated because they are afraid of pain. They stop socialising, stop doing their hobbies, stop having fun, because of the FEAR that doing these activities will cause pain.

This is NOT true for me, and most others who live with chronic pain. Particularly chronic secondary pain.

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Firstly, it’s not FEAR of pain that’s stopping me from socialising or enjoying my hobbies.

It is PAIN that is stopping me from socialising and enjoying my hobbies.?

I am in constant pain.? And, for at least part of every day, that pain is severe.

When pain is severe, it is impossible to socialise, impossible to enjoy activities and hobbies.? My pain is often so severe that I can’t even read a book, it’s impossible to focus.? All I can do is lie there, and breathe, and let my mind wander to happier places.

I have very limited pain relief; I get 2-5 functional hours a day.? Most days I have about 3, some days I have none.

The rest of the time the pain is severe, meaning I can’t work, can’t do anything.?

I know, it’s hard to believe.? But it’s the truth. ?And it is not psychological, it is physical. I have chronic secondary pain, that is chronic pain that is caused by pathology, in my case, a disease process.

Secondly, I need to work.? I need to earn money.? Disability is a pittance, and no one can live independently on the disability support pension.? Therefore, I run several businesses.?

Work comes first. Earning money comes first.? If I am upright and functioning, I am working.?

I take opioid pain medications to reduce my pain from an 8+ for a few hours a day.? As I said above, some days its 2 hours, some days its 5 hours, some days its none.? Its never more than 5 functional hours.? Can you fit everything you need to do in a day into 5 hours?

No, I can’t either.?? By the time the work is done, there is no time – no pain relief left - for fun, for hobbies, for socialising.? Because work must come first.

Some days, when business is slow, when my orders are shipped, if pain levels are still manageable (not often) I will get to do something fun. ?I will enjoy archery or take my dogs for a walk (or even a slow jog) or do a group exercise class.? I love being active and would never choose a sedentary life.

Once the effect of my pain medications wears off, as it does every day, I am unable to do anything fun. I am in too much pain. ?This means that if I manage to do something fun, its for 30 minutes at most.??

Imagine having fun for about 30 minutes a week.? No more.

That’s the reality of my life, and for many others.? We don’t’ CHOOSE for our entire lives to be work, it is chosen for us, because the campaign of terror (not science) against opioid pain medications means that doctors will no longer treat our pain.

We have no choice. No agency, no voice.

Please, understand:

I did not CHOOSE to stop doing all the ‘fun’ stuff. And certainly NOT because I am afraid of pain!

The economic reality is that I have to work.? I need make money. ??I need to pay my bills. ?Work comes before ‘fun’.? ?It has to.

Once the work is done, most days there is no more pain relief, THERE IS NO MORE TIME, so there is no fun.

Its very, very simple.

And it has NOTHING to do with fear.

I keep explaining this, but people refuse to understand.?

And health care professionals, particularly physiotherapists, have been taught that all people who live with chronic pain are fearful and that’s the root cause of their pain.

That may be true for a minority of people who have chronic primary pain.? It is NOT true of people who live with chronic secondary pain. ?

Fear is NOT the cause chronic secondary pain.? Tissue damage is. ?Pathology is.? A disease process, an injury.

So, once again, the distinction between primary and secondary pain is paramount.

And, once again, the problem IS that chronic secondary pain has been wiped from the narrative.? Physiotherapists have been taught that all ‘chronic pain’ is chronic primary pain. That chronic pain is purely psychosocial. AND, importantly, that ‘chronic pain’ is caused by fear and anxiety. ??

Most have never even heard of chronic secondary pain, which is pain where there IS ongoing tissue damage, ongoing pathology, ongoing disease or injury. ?Most have been taught that ‘chronic pain’ is never associated with tissue damage.? This is wrong.? Only chronic primary pain is not associated with tissue damage. Chronic secondary pain most certainly IS associated with tissue damage.

My chronic pain is caused by ongoing tissue damage from progressive, incurable, autoimmune diseases.

Yet I, and people like me, are being treated as if our pain is psychological.? That our pain is caused by fear of movement, and anxiety. ?And worse, we are being treated as if we are in control of our pain.? Even that we caused our pain, due to being fearful and anxious and depressed.

This is not true. ?Its actually extremely offensive.

At best this is ignorant and at worst this is gaslighting. ?Victim blaming.

The ‘solution’ to ‘chronic pain’ according to these pain gurus, is to just get back into doing the things you love.? You’ll be happy and distracted from pain and life will be better! And the pain will go away!

Magical thinking.

That might work for someone who has psychological pain.? Someone who IS fearful of pain. Someone who is avoiding life, because they are afraid of causing themselves more pain. ?Those people exist, but they are a small minority of the people who live with choric pain.? They are someone who has mild to moderate chronic primary pain.

It does not work for most people.? Because it does not work for someone who has chronic secondary pain.? Pain that is caused by injury or a disease process. Physical, pathological, biological, pain.

You cannot ignore the biological basis of chronic pain and expect the pain to disappear via education or psychological therapies.

You can reassure and educate me all you want; it’s not going to impact my pain. Because I don’t need reassurance. I am NOT afraid of movement. I am NOT afraid of pain.?

And this is why it’s a huge problem that chronic secondary pain has been erased from the narrative.

Because health care professionals do not understand chronic secondary pain, they do not understand that I can’t just ‘get back into’ doing the things I love.? I am in too much physical pain most days.

That’s why I can’t socialise or enjoy hobbies.

Not because I FEAR pain, but because I AM IN PAIN.

Please, understand this.

Please learn this. ?

Please stop telling people who have severe pathological chronic pain from disease or injury to just ‘get back into doing the things you love’.? Its not possible.? Not without pain relief. ?

And yes, pain is generated by the brain, but it is also generated by the pathology, injury, disease.? You cannot ‘change the brain’ without also treating the cause of the pain – the disease or injury.

This is NOT the biomedical model. This is the ‘bio’ in the biopsychosocial model.? Something that many physiotherapists seem to have forgotten.

To learn more about chronic secondary pain go to Pain Patient Advocacy Australia