The title says it all. Why are those people who are living with daily, severe pain excluded from the conversation around pain management? Why are we treated as problems with no solution, difficult, unpleasant and something to be swept under the rug? With “patient centred care” being the new paradigm and the gold standard of care, in most diseases or conditions patients’ lived experience is included in the development of treatment guidelines and standards of care. But not in chronic pain where those with the most severe disease are ignored and vilified and never consulted or even acknowledged.
If a patient story is included in a webinar, seminar, or podcast, the patient is one of two stereotypes.
- The addict who previously took opioids but overcame their addiction and Hey Presto! their pain is gone too! They no longer take any medications for pain. They are a hero!
- The person living with mild to moderate chronic pain. Occasional pain or intermittent pain, and usually not severe. Someone who catastrophised and was afraid of exercise. Someone who became house bound due to a self-imposed prison of fear-based exercise avoidance and anxiety. Once they stopped being afraid of moving, of getting out of the house, they found that their pain didn’t get worse, but got better, and now they can do so much more. And they no longer have chronic pain! They no longer take any medications for pain. They are a hero! (Note: They never had severe pain in the first place. They had poor coping skills and maladaptive thoughts which led to maladaptive behaviours. )
Do you see a pattern forming?
And the person who is never included? The person suffering from degenerative disease, from inflammatory disease, from nerve disease or injury. These are kinds of pain that can be both severe, and constant. Life-limiting pain. Disabling pain. High Impact Chronic pain.
This is biological pain. Pathological pain. Structural pain. The definition of this kind of pain is Chronic Secondary Pain. that is, pain that is secondary to a disease process. That’s a very important distinction. Because this kind of pain is treated very differently to Chronic Primary Pain, where no structural cause to explain the pain can be found. But all you ever hear about in the media, or from chronic pain advocacy groups, or in research studies is Chronic Primary Pain. Chronic secondary pain is ignored. As if it didn’t exist.
What’s the difference? Chronic secondary pain is the result of disease or injury. It IS structural pain, pathological pain. My personal way of describing it is that it’s acute pain that happens every day. There are many names for this type of pain, but none of them are acknowledged anymore. Because now all chronic pain is deemed to be chronic primary pain, which is psychosocial, and all treatments offered for ALL chronic pain are now psychosocial. The “bio” in the biopsychosocial model has been forgotten, or lost, or ignored. Some by design, some just followin ghte latest trend. To the great detriment of peope who live with structural pain. Which if often severe and disabling.
Common sense says that psychosocial treatments will help psychosocial pain. But how can psychosocial treatments help biological or structural pain? It can’t. which is why so many people living with the most severe chronic pain conditions are suffering deeply.
Biological pain generally requires a biological treatment: procedures or surgeries to correct structural problems if they exist. Where surgery or procedures are not appropriate or not effective, or all treatment options have been exhausted, pain medications are necessary to reduce pain.
Of course, all pain has psychosocial components and those of us living with biological/structural/disease related pain do address those psychosocial factors. Most of us figured out for ourselves that sitting around dwelling on pain doesn’t help, and that movement is essential to retaining physical function. Most of us do as much as possible every day, we want to maximise our lives. But painful, progressive diseases tend to progress, and we often find that over time we are capable of less and less, and we do become disabled and housebound. The medical story says that we do this to ourselves by avoiding leaving the house. We make poor decisions; we have poor coping skills. This is victim blaming.
We are NOT the same a the people with chronic primary pain/non-specific pain/psychosocial pain who, essentially, increase their mild/moderate pain becuase htey have no self-efficacy and they make poor choices. Like, choosing to say in their comfy recliner becuase they are afraid of causing themsevles pain.
I am not afraid of causing myself pain. I wake up in pain. Its always there. The only way to reduce my pain is with medications. Once my pain is reduced from an “8” to a”6″ or so, I go out jogging, do a group fitness class, or work for a few hours. Yes, all pain is real, but my pain is structural.
For me, the truth is some days I cannot leave the house without help. If there is no help, as is often the case, I can’t leave the house. That’s a physical thing, not a psycholgical or psychosocial one. I do not disable myself through fear or avoidance of exercise. I do NOT think that pain equals damage. I do NOT think movement will cause more damage.
I know this is not true. I am physically unable to walk or drive a car some days because I am in severe pain. No amount of mindfulness or positive thinking can change that, although I live very mindfully and generally have a very positive outlook. These things help my pain, but only to a point. They certainly cannot cure it.
I exercise as much as I can. I’ve found that those of us living with severe, daily pain generally DO exercise. We do move. We are housebound, not because we are afraid of causing ourselves pain or harm, but because our pain is constant and severe. It is always there. If we leave the house, the pain comes with us. On a good day we might be distracted from our pain for a limited period, and that’s amazing. And worth the rebound pain that we experience afterwards. But we still need help to leave the house, and some of us don’t have that help. Some of us have been abandoned by pretty much everyone, because let’s face it, we are disabled, we are in pain and we are hard to be around for this reason.
Some people don’t believe us, and therefore don’t want to be around us. Some people do believe us but don’t want to face the reality of our lives and therefore don’t want to be around us. They don’t know what to say. How to behave. In short, believe us or not, we’re a confronting population and we’re not much fun to be around or think about too hard. In fact, ‘too hard’ pretty much defines us. From friends and family to medical professionals, we are always deemed ‘too hard’.
And therefore, our story is never told. People like happy endings, the heroes journey where the person overcomes! But there isn’t a happy ending in severe, daily pain caused by progressive diseases. There are no podcasts interviewing people living with severe chronic pain, because that’s not entertaining or uplifting. And in our society rife with toxic positivity, that’s the most important thing (/s). The media doesn’t pick up our stories because there’s no click-bait title or ‘how to’ solution. And medical professionals certainly do not want to talk to us, or about us, very much. We are the dirty little secret of pain that no one wants to acknowledge: some people live with degenerative diseases and/or injuries that cause severe pain and this severe pain is very hard to treat.
Except there is a safe, effective treatment for some of us. It does not cure our pain, but it does take the edge off. It does reduce the pain, at least temporarily. This treatment makes life livable. This treatment is opioid pain medications.
And yes, opioids are safe. Addiction and overdose are vanishingly rare in the chronic pain community.
We are stigmatised because we require opioid pain medications to have any quality of life. To function at all. Opioids do not relieve all of the pain, but they generally give us a few functional hours a day. Some people are able to function almost normally thanks to their long-term opioid therapy. They take their medications exactly as prescribed and hold down jobs and even high-level careers. They take care of their families, and they are active in their communities.
Until their doctor takes their opioids away. Then tehir pain returns and tehy return to lviing with severe, daily pain and become housebound. They lose every aspect of their life that makes it worth living. They become couchbound, isolated, confined to four walls and life with a screen as their only window to the world.
But NOT by choice!
For some of us opioids only give us partial pain control. For me personally, I get six upright hours on a good day, but I use those hours to the full. I work part time, I exercise, I take care of my family. I play with my dogs, I cook and clean and manage the mechanics of life. But I am always playing catchup, because I only have six hours at best. Healthy people have 16 hours or more.
Without my opioids I am disabled and require help with the most basic of tasks, showering, feeding myself, brushing my teeth. I find it humiliating to require that much help. Especially when there is a simple solution to my pain, that gives me some quality of life and the ability to care for myself and my family. But I’m not allowed to have this solution because in the last few years opioids have gone very much out of fashion. They have been demonized, and stigmatised, as have the patients who rely on them for quality of life. The science has been bastardised and cherry-picked and the truth is buried far beneath tonnes of half-truths and twisted statistics while doctors and physiotherapists and pain neuroscientists build lucrative careers on the stacked high bodies of those living with severe, daily, chronic pain.
Even more frightening is that lately there have been a few media stories of chronic pain patients overseas who, having had their opioid therapy taken away, have applied for and received approval for medically assisted death.
The powers that be in their countries will not give them opioid pain relief, as its far too dangerous. But they will assist these people to die. Problem solved.
Reading this story is heart-breaking. And terrifying. This is not the only case of ‘voluntary’ assisted dying. And I find it hard to see it as ‘voluntary’. This lady’s pain has been left untreated, she has been denied medications that help her pain and give her quality of life. She has been worn down, beaten by a system that does not care about pain, no longer believes in its existence. OR its severity. Her story is a tragedy, and every medical professional, every organisation, ever person who is anti-opioid should be deeply ashamed. THIS is where your anti-opioid advocacy winds up. Death is now the only way out of pain for some of us. Everyone has their limits. Everyone will reach a point where they can live with the pain no longer. Just look at the suicide statistics.
A quick google scholar search reveals multiple studies that rank chronic pain as a significant risk factor for suicidality. This study states that twice as many people who live with chronic pain complete suicide than people without chronic pain. Living with chronic pain makes it twice as likely you will die by suicide. That’s significant. And 100% avoidable.
This study quantifies suicidal ideation as being prevalent in 24% of chronic pain patients. Those who have disabling pain and are unemployed are six times more likely to report suicidal ideation. That is, those who live with the most severe pain, those who’s pain limits their ability to work. Makes sense. A lot of a person’s identity, meaning, and satisfaction in life comes from their work. When that is taken away, there is a huge hole that cannot be filled. Additionally, many people see those who do not work as worthless, useless, drains on society. Facing that stigma every day is not easy.
Imagine suffering interminable, intractable pain. Most people don’t believe that chronic pain can be that bad. Your doctor tells you there’s nothing they can do, even though they used to prescribe a medication that relieved your pain effectively. You used to work and have a social life, albeit limited. Now, they say they cannot prescribe these medications anymore, because the government said so. Everywhere you turn for help, you are dismissed, demeaned, and denied.
How long could you keep living this way? With all of this stigma, all of this emotional pain on top of the physical pain? Not having a voice, being silenced, having no control, no agency, no power.
I completely understand and support voluntary assisted dying. Living with constant, severe pain is incredibly difficult. It’s not a life. If there is no hope for reprieve, no hope for relief, I understand (from very personal experience of severe, daily pain) why people choose this option.
The problem is that there IS a solution. Pain CAN be relieved. People do NOT have to die!
People living with pain can do everything right but still be in pain. We are positive. We meditate. We live mindfully. We do expect our pain to improve, and we also accept it might not, and that’s OK. (Depends which brand of psychotherapy we’re engaging in as to which answer is “correct”).
We move as much as our broken bodies will allow. We’ve done multiple kinds of manual therapies – massage, acupuncture, chiropractic, osteopathy. We have spent thousands and thousands of dollars on surgeries, procedures, medications, physiotherapy, looking for effective treatments and paying for people to help.
And we are still in severe, daily pain. Locked in our houses with no help, no support and the myth that we exaggerate our pain, that we could fix our pain if we weren’t so lazy, or so afraid to try self-management techniques.
We are the most maligned, most misunderstood and the most feared patient group ever to darken a GP’s door. We are difficult. Seen as demanding, and unwilling to magically fix ourselves, according to multiple podcasts, medical articles, medical studies, medical texts and doctor’s posts on forums. We are the people that everyone wishes didn’t exist.
And looking at how many pain patients are being approved for voluntary assisted dying, maybe one of these days we won’t exist.
I, personally, as a pain patient advocate, have been invited on podcasts. I’ve been interviewed by the media. I’ve applied to speak at conferences, on webinars. The media always either drops my story or minimises my pain. Reporters have an angle, and its rarely “Oh this person is in terrible pain! We must help them!”. That does not sell. That does not generate clicks. “Addiction!” “Bad medicine! Pill Mills! BIG PHARMA BAD!” that gets clicks.
Podcasters have invited me on their show, and then researched me. And found that I am very much pro-opioid for those who need them. And then I’m uninvited. I’ve been dumped from currant affairs programs, radio programs, podcasts, facebook lives…no one wants to hear that opioids are safe and effective, because that does not fit their biased, incorrect narrative.
The science is clear. The evidence is out there. But no one wants to look at it.
I will keep working to raise our voices. We do exist. We live with severe, daily pain and we deserve to be treated with respect and have our pain treated with safe and effective medications, where appropriate. We are the most vulnerable members of any society. We have a voice. We are talking as loudly as we can, and we’re tired of being talked over. We are tired of being gaslit and victim-blamed. We live with high impact chronic pain, the most severe type of chronic pain, and we deserve to be heard. We deserve safe and effective treatment. Individualised treatment.
We are banding together and that’s what pain patient advocacy is all about. A place for people with lived experience of high impact chronic pain to gather and support each other. And use our skills and experience to force ourselves into the conversation. To pull out a seat at the table. To stand if necessary.
We are here. We exist. We need help. And we’re not going away. We’re only going to get louder.