The Reality of Living with Chronic Pain: A Journey into Undetermined Territory

What is it like when you have been in constant pain for thirteen years? What if you have finally had surgery on that hernia, but the pain has not gone away afterwards, and is even still present in all its severity? When everything you do can cause another bolt of lightning to shoot mercilessly through your body? “Nerve pain is a vicious opponent that waits patiently to plug into the nerve network at the slightest movement error and make all contacts react with each other into an overwhelming river of pain from back to foot,” writes journalist Sanne Bloemink in her new book Pain. An expedition into undetermined territory. ‘That’s why I lie as still as possible. That’s why I have to do my best and pay so much attention. That’s why I don’t go out. That’s why I’m so alone.’

Bloemink begins her book with this passage. It is a personal account, a quest in science, a look into the past, a philosophical essay and medical-ethical plea in one. Too much for one book, you might think. A whirlwind of ambitions, styles and layers: as long as it goes well. Yes it’s going well. The result is overwhelming, almost oppressive, and ultimately, above all, impressive.

Chronic pain is a collective name for all physical complaints that last longer than three to six months. Worldwide, an estimated 20 percent of adults have chronic pain, to a greater or lesser extent. Low back pain is the variant that costs the most economically: care, absenteeism, disability. But pain in the neck, shoulders, hips, knees and feet is also included, as are RSI, multiple sclerosis, fibromyalgia and migraines.

These conditions can have different causes. For example, an accident, acute injury, operation or illness. Or there is no identifiable cause at all. People who struggle with it often follow the same path: first struggling for years, floating between hope, gloom and shame; Finally, back to the doctor, blood tests and photos, no clear results, further muddle through, physiotherapy, back to the doctor, who no longer knows, and then do the research yourself: yoga, mindfulness, acupuncture.

Nothing helps, the pain becomes more and more intense, your mind becomes increasingly heavy. And in the meantime, your world is getting smaller and smaller. Hobbies and social activities disappear. Work is going less well, or not at all. You can’t think about anything else anymore. You don’t want to burden your loved ones with it. You become increasingly lonely and sink into a downward spiral of pain, stress, despondency, insomnia, even more pain.

Bloemink describes it meticulously, almost clinically, with a certain distance. But that is precisely what makes the book so moving. It is never sentimental, but between the lines there is still that intense impact of chronic pain.

Alarm system

Yet the book is certainly not just another tragic life story. Above all, it is a very clever search. First of all to the medical story. Bloemink delves into the science, speaks to doctors and researchers, and then describes the biological background of the ‘chronic pain syndrome’. This has now been recognized by the World Health Organization as an independent condition. Regardless of the possible cause, which may or may not still be present, the body of the patient with chronic pain has changed physiologically. At the level of the brain, structures have been enlarged or reduced, connections have been created or lost. Signal substances are present in different proportions in the nerves. And changes can even be seen in the immune system. All this means that the pain system, which is normally indispensable as an alarm system, is adjusted too sharply. The brain now incorrectly interprets normal stimuli resulting from movement, pressure, cold, light or sound as pain. Just like phantom pain, it is real pain, visible on MRI in the brain centers that process pain.

Additional factors such as stress, anxiety, sadness and lack of sleep further enhance this process. And so this downward spiral arises, where cause and effect can no longer be distinguished from each other. Even when the cause is no longer present, after six months this swamp of self-reinforcing misery invariably also occurs.

And then there is the historical story. From the Bible and the ancient Greeks to the Middle Ages and today’s self-culture: pain has always played a major role in our imagination, and therefore also in art, literature and stories. Quacks who sawed off legs without anesthesia, Sherpas who had no problem lifting heavy loads up Mount Everest: Bloemink talks about it in a tasty way. She also undertakes a philosophical search from Homer and Descartes to Virginia Woolf and Lieke Marsman. Does pain actually make sense? What does it say about us and our society that we collectively – consciously or unconsciously – associate pain with weakness, difficulty, affectation? Isn’t pain just a part of life? And what about the separation of body and mind? Bloemink visibly struggles with it and leaves the final judgment to the reader.

For people who do not have chronic pain themselves, the book will be a revelation. Such an all-consuming disease, which affects so many people – if one in five suffers from it themselves, almost everyone has someone close to them with chronic pain. Whether you know it or not. So it wouldn’t hurt to look into it, as a family member, friend or healthcare provider. Then this book is a great start.

Be warned

And if you have chronic pain yourself? For the undersigned, an expert by experience, the book was on the one hand refreshing, enlightening, a (wry) feast of recognition. But the book also grabbed me by the wayside. Be warned. It calls everything into question, from your own role in maintaining the pain to the question of whether you focus too much – or too little – on the psychological aspects. This book will shake all your beliefs to their foundations. Have I been working so hard on this one path all this time, and suddenly Sanne Bloemink – clearly very intelligent and well-read, and thoroughly initiated into the subject – comes along to tell me that that path is not the answer? Have I been wrong all this time, uncritical, not reading enough?

And what does ‘learning to live with the pain’ actually mean? Accept that it will never go away? Am I naive, stubborn or stupid because I don’t accept that? Or does it mean: dealing with the pain differently, not letting it be all-consuming, learning to ‘reprogram’ your brain, always telling yourself that the pain is a false alarm, disconnecting your emotions from the pain? The latter is my interpretation and therefore also my strategy, but it seems as if Bloemink no longer believes in that approach. She dismisses it as ‘maddening circular reasoning’ that makes ‘the lack of improvement still your own fault’, she writes angrily. A blow for herself but also for all her fellow sufferers.

The latter is perhaps a pitfall of this full book: that people – patient or not – focus too much on one point that affects them, possibly overlooking all the other sides of the story. But the question is whether that is a bad thing. In any case, it is good – for the patient, bystander, healthcare system, indeed for the entire society – to shake things up. And then talk about it. Because that is ultimately the message: pain is also a social problem, with a social solution. We have to get away from that taboo, away from that stigma and loneliness. After all, we are all vulnerable after all. And that in turn offers hope.

Also read this article about chronic pain: Chronic pain does not go away with a shot or pill.

Sanne Bloemink: Pain. An expedition into undetermined territory. Pluim, 284 pages. €24.99

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2023-09-28 12:03:01
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