Wednesday, 22 March 2017 14:38

What is the pain of Lyme patients?

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Many people don’t understand why I made Lyme my business, as I am not offering a medical solution for it. Why would I spend years of my life educating the public about it and working to connect professionals from different backgrounds to create impact? What makes Lyme so different from any other health issue? Why does the social-emotional side of Lyme seem to hurt even deeper or his a larger impact than the physical side of it?

“Truth always rests with the minority, and the minority is always stronger than the majority, because the minority is generally formed by those who really have an opinion, while the strength of a majority is illusory, formed by the gangs who have no opinion — and who, therefore, in the next instant (when it is evident that the minority is the stronger) assume its opinion… while truth again reverts to a new minority.” Søren Kierkegaard

“What is the pain of Lyme patients?”, someone asked me. This is a rather simple question. The answer it is more complex, yet it does clarify why Lyme is much more than just another physical disease. 

Lyme is called a multi-system disease. Mostly this word is used to describe how the Borellia, the bacterium causing Lyme, attacks or disables all systems in the body. The bones, the skin, the heart, the brain, the nerves and all central organs in the body are all affected.  So this shows the first level of pain: simply being bedridden for a long time, with severe headaches, pain, tremors and the like. This does not differ much from other serious diseases however. 

As the Borrelia has a 28 day growth cycle, the many complaints people have migrate through their body and vary in severity.People with Lyme disease are often described as "looking good" and their blood work often comes back normal, which makes it a challenge to diagnose both the acute and chronic condition. 

This leads to pain on a second level: the inability of many people around them to understand a pattern that is not fixed and a tendency to blindly trust what authorities claim to be true or not. In order to understand this, a comparison with ALS makes sense. In general people know that ALS is a slow way to die, with a decrease in the ability to control muscles. That is why large groups of healthy people empty ice buckets over their own head, to attract attention and research money.

But if someone who is diagnosed with ALS finds out he actually has Lyme, is able to stop the progression of the supposedly ‘incurable ALS’, he needs to spend over $150.000 in legal costs to fight his own government to be allowed to get treatment. The patient in question recently died, after losing the court case. 

The third level is related to the highly disputed status of Lyme, as most doctors parrot the national guidelines that basically state that ‘after a few weeks Lyme no longer exists’. For the first time in human history, suddenly a pattern of severe and debilitating symptoms magically gets attributed to mental causes. As a result, many patients are referred to a psychiatrist and some doctors have gone as far as accusing their patients of being ‘attention seekers’ who are fabricating their symptoms. 

In fact, current Lyme health guidelines simply don’t 'believe' there is a chronic condition after a few weeks. Lingering illness is now described as M.U.S. (Medically Unexplained Symptoms). This is a completely meaningless term, yet one with severe legal, medical and financial consequences.

So when the patients start doing the research on Internet, somehting which their doctors should have done, their friends and family start hearing increasingly more about ‘Lyme’ and the injustice of it all, but cannot really take that in. The topic becomes increasingly scary, while they lack the options to do something about it. The more emotion is added to the mix, the less they can deal with their ill friends. 

This has several effects at once. ‘Lyme’ suddenly becomes a ‘Pygmalion experiment’ in a very nasty way. Based on random test results, people are judged wrongly, both medically and socially. To their increasing amazement they find that their choice in treatment is much more limited than they ever assumed it would be. Anything that falls outside of the protocol, is either not allowed, not paid for, publicly ridiculed or simply forbidden. 

So the Lyme patients go down a slippery road, a road that I compared to Frodo’s journey into the Land of Mordor in ‘The Lord of the Rings’. A road that becomes grimmer and nastier at every turn. The profession that they assumed would help them, not only shuns them but also declares them crazy. They spend years to find proper diagnoses and treatment, while paying a fortune to get it. In the meanwhile they need to fight insurance companies, bureaucratic institutions, their employers who try to get rid of them and even Child Protection Services, if their children are ill.

Often this results also in devastated marriages or relationships and the loss of the companionship of their family and their former friends and colleagues. Many compare their once functional bodies with torture chambers, their lives with hell or even with an invisible concentration camp.

Yet they are declared crazy by the same profession, which manages to magically turn the fact that they do not know something (‘unexplained’) around as the basis for a Psychiatric house of cards. A deadly house of cards, because this is abused to reverse causality and for example blame parents for the illness of their children or lock people up in psychiatric institutions. 

Being heard

This is the pain of social isolation and something much deeper: of not being heard. A story I once read in one of the most impressive biographies ever, ‘Test of Courage’ about the life of Michel Thomas, came to mind when I was searching how to explain this depth. His friend Michael Nelken, a young German writer returned home in 1936 to visit his mother and disappeared for two years. In Germany, his writing had attracted the attention and displeasure of the government, so he had been arrested and sent to Dachau, the first concentration camp. 

There he contracted Tuberculosis, but after his release he still felt compelled to write a book about his experiences, thinking that it would cause international outrage. But his book was rejected by French publishers as hysterical and improbable propaganda. Worse, when a condensed account was finally published in a German refugee paper, it was bitterly attacked as fantasy. Some Jewish critics even described the book as the product of a sick imagination. 

This reaction depressed Nelken so much that he committed suicide. He had survived the brutalities of Dachau and the ravages of Tuberculosis, but was devastated by the rejection of his own people. Thomas said: “You will survive 99 lashes of the whip, but not the hundredth. For Michael this last blow was to tell his story as a warning and not to be believed.” 

This is what I see happening in the worldwide Lyme community: a deep need to express the inexpressible, also out of a genuine concern for other people. So on this level the real pain is the inability to find language, stuck in the existing stereotypes of ‘attention seeking’ or hypochondriac’.

My assessment is that this is the main reason why suicide is the most common cause of death amongst Lyme patients. Most will survive the ongoing ravages of the many symptoms of Lyme, the abuse and gas lighting by the medical profession, weird social reactions, the staggering health care costs, the loss of custody over their children and the many more lashes that are so common in the Lyme Labyrinth. 

Softening the hundredth lash

Partly because of my training as a social psychologist, my professional background in whole brain thinking, complex systems and solutions focused and partly because I function much better than most patients, I have been able to write a book that gives them the words or languages they may lack to bridge the gaps in experience and knowledge between the people close to them. In a way that those people can actually take it in, touching both their minds and their hearts. 

As one reader put it “despite its heavy and important topic, this book is a delight to read. The quotes, metaphors and love offer soft candlelight and warm campfire camaraderie on an often dark and lonely journey.” Or as another ill reader said in her review “this book puts an experience into words that we - the patients - often cannot”. And an outsider, who I seduced into reading it despite his obvious reluctance, exclaimed afterwards that “this book doesn’t only turns on the light, but also opens many doors and windows for the Lyme patients.” 

After publishing I was shocked to learn how many ill people were no longer able to read. This is why I try to frame my communication in ways that may trigger them to read it. Sometimes by provocative statements, by sharing the many stories of people or by applying my profession: gathering knowledge from reliable sources in a complex, disruptive field. 

Yet its existence alone also may already serve as a validation of the fact that their experience is real and that it matters. It is a very simple, yet powerful message, which is shown in this movie, showing a variation of this classic psychological Asch experiment conducted in the fifties: "you are not alone and there is always hope". Regardless of what the programmed majority claims to be true. 

As is stated at 4.22: "The partnership variation shows that much of the power of the group came, not merely from its numbers, but from the unanimity of its opposition. Once the unanimity is punctured, the group's power (over the individual's perception and choices) is greatly reduced."

My book will both assure the ill readers that they are not crazy as well as allow their friends to clean the lenses of their perception. 



Huib Kraaijeveld

Author of “Shifting the Lyme Paradigm", chairman of the On Lyme Foundation and member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes

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