Wednesday, 30 December 2015 13:40

Why don't you become a whore?

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Suppose your daughter has cancer. She asks for help and gets told “Well, if you don’t want to become a whore, apparently you don’t want to solve your problems.” How would you feel and what would you do?

A Christmas chat

My chin dropped when I heard this from a Dutch patient on a chat, the day before Christmas. I’m trying to help her with her campaign to get some financial help. If nobody does, she has more problems than “just” being ill.

She sleeps in a bed that is collapsing. Her landlord wants to kick her out of her house. The bank wants to seize her (non existing) assets and sends bailiffs to her house each week. Her (obligatory) health insurance covers none of her treatments. And she can hardly buy food anymore, because the Dutch disability payment is lower than the official poverty threshold.

So now she is asking other people to help her to literally stay alive. In response, someone - who probably wanted to be her first customer - gave this “suggestion” to sell her (ill) body. She is looking good, is 32 years old and “was in bed anyway”, according to the guy.

What’s in a name?

Does this young lady have cancer? No. She has chronic Lyme. Should it matter? Does it matter? It seems to make all the difference in the world. Apart from the fact this wanna-be client of hers apparently does not know that Lyme is sexually transmittable.

When I'm puzzled about something, I have an urge to write about it. Is she the only one who gets responses like this? Not at all, it seems. In order to find out I asked what reactions people got from their social environment in a closed Facebook group for Dutch and Belgium people with Lyme. I did that the next morning, on Christmas Day.

Actually I did not expect many reactions for the next two days. Christmas is when people spend time with their families, isn’t it? Well, they came in; one after another. The responses were so bizarre that - while we could actually cry about it - the sheer number of them made us laugh out loud together instead. Getting things in the open, does give some relief.

Take a look.

Friendly remarks

Sister: “why don’t you go back to bed? That’s all you’re good for. You’re ruining my life.”

A friend: “Get over it; you just have a broken heart.” (I was not in any relationship)

A friend: “You have performance anxiety and don’t know what to do with your life” (I had my dream job as a stewardess and had to quit it)

Mother: “You are like a diva. I have to carry everything to your bed” (I cannot walk anymore)

In a shop: “How can you be ill, if you are beautiful?”

Boyfriend (soon to be ex-boyfriend): “You are not tired; you are lazy.”

Family member: “I would also become depressed, if I’d had to lay in a darkened room all the time!” (I’m not depressed)

A friend: “I knew you weren’t really ill. If you fancy sweets, you can go out shopping.” (my mother had the flue, so I had to leave the house for the first time in two years to buy us food)

My manager: “why don’t you get a disability status? Than I’m rid of you.”

A neighbor: “Why don’t you have more sex? Than you’ll fuck Lyme out of your body.” (my libido is reduced to zero)

My family-in-law: “We’re so sorry for your husband, to have you as his wife.”

A friend of the family: “If you have a sense of humor, you cannot be as ill as you claim to be.”

A self-proclaimed “spiritual” friend: “your unconsciousness only tells you that you are ill.”

An acquaintance: “I know somebody else with Lyme, who is REALLY ill!”

In a store: “Oh, my horse had Lyme and that got fixed alright.”

A friend: “Why don’t you go to the USA? The best doctors are there.” (I can hardly dress myself anymore)

Mother: “Don’t make a fool of yourself!” (when my face contorted from the pains)

Sister: “there is nothing wrong with you. You just prefer staying at home over working.” (after I had to close the door of my own company that I built up with heart and soul)

A friend: “Just be glad you are not in a wheelchair.” (when I was fighting panic attacks, depression, psychoses and excruciating nerve pains)

Ex husband: “If you would have had cancer, I would have stayed with you.”

Best friend: “If you don’t visit or call me, you are a worthless friend.” (I couldn’t deal with sound or light anymore, and was locked in a darkened room for two years)

Family member: “People like you should be forbidden to have children.”

A friend: “Why don’t you march on The Hague, together with others with Lyme?” (I cannot walk anymore)

A friend: “If you can still walk, you cannot have Lyme.”

Teacher: “I doubt if your daughter is really ill.” (she is in a wheelchair, has no control over her muscles and is now in a different school)

Friends: “Why don’t you go on holiday?” (Sure… How?)

Friends: “Don’t you want a baby?” (wtf?)

Mother: “If you can bend down, you can also walk.” (I’m in a wheelchair)

Brainwashing?

This list went on and on. So why do friends and families seem to react so awkwardly to the condition of their loved ones? A simple explanation is that they parrot the opinion of professionals. In paragraph 9.11 of Shifting the Lyme Paradigm you can see a long list of incredibly stupid things that doctors have told very ill people.

Even though I now asked for responses by non-professionals, a couple of “professional” statements are worth mentioning here, because that might help you understand why laymen react the way they do:

Doctor: "I just hear you saying that you want to get rid of your pains and other complains. Well, there is no solution. Besides jumping off the bridge nearby."

Specialist: “You have too many physical symptoms, so it must be psychogenic.”

Doctor: “Well, your heart is still beating and you have enough oxygen in your blood.”

Specialist: “Lyme can only exist for six weeks.” (Now compare this statement to the 21.8 years people claim it took them to get a proper Lyme diagnosis) 

Lyme patient: “my doctor sent me to the UMC (one of the self proclaimed Lyme “expertise centers" in the Netherlands) to test me for Lyme. A year later I demanded to have a look in my medical file. He never had me tested for Lyme, but for HIV (wtf!?). When I asked him to explain, he said that I could not have Lyme, because I did not have any heart problems. Well, now I do.”

Again, how would you react if things like these were said by doctors to people close to you with cancer (or any other acknowledged serious disease, for that matter)? Is it possible that when a disease is hard to classify or understand in simple terms, that people around the ill ones automatically believe what “experts” say? That they rather copy their prejudices blindly? That they rather attack the weaker ones than dealing with their own insecurity and powerlessness?

A Belgium young lady with Lyme told me that she could tell when your family had been “brainwashed” by her doctor. A few weeks later they would become themselves again and act (relatively) normal.

Attribution

The fact that most doctors are blunt towards Lyme patients can simply be explained by three factors: they don’t get the proper information, are awkward admitting they do not know something and they simply seem to apply a mechanism to avoid any blame and keep their self-image intact.

This is called “attribution” in Psychology. Attribution is a powerful mechanism to establish or deny causality. Most politicians are good at it. In a culture of increasing legal suing this becomes even more important to maintain. One doctor was frank to admit this and told his patient that he refused to follow the ILADS protocol, because “he did not want to be legally responsible, if she should die of the antibiotics.”

The costs of these kinds of mechanisms are that for example the willingness is absent to admit that current standards, tests, procedures and knowledge are not as perfect as one should hope for. Therefore the curiosity needed for progress is almost non-existent.

Covering up

A second way to explain these bizarre reactions to ill people, is that Lyme is not that visible in half of the patients (although: is cancer that visible or do people just blindly believe their friends' doctor's test results - with sometimes catastrophical outcomes?). In order to maintain their beliefs, they have to stop trusting their friends, relatives and children. That's a high price, isn't it?

It seems very hard for people – both professionals as well as friends and family – to just say: “hey, I’m sorry. I don’t understand what’s going on with you and I don’t know how to respond…”.

Could it be possible that people just try to fend of feeling insecure around something they don’t know and which takes longer than what they planned? Or could it be something else? The urge to beat on people in a weak position? Jealousy? Killing the messengers?

What message?

In 1949 the WHO (World Health Organisation) defined “health” as a process with physical, mental and social aspects: "Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity." After over fifty years hardly anybody seems to get this; least of all the WHO itself.  

Sometimes I have the impression that according to this definition officially “ill people” may even be more healthy than “healthy” ones, at least in the mental and social departments. With the group professionals being the most unhealthy of all, as it seems. Therefore I chose to work with only the posititve exceptions in this group in the On Lyme Foundation. As I wrote in my book: "The matter at hand is too urgent to educate “idiots” first.”

Is all this important to appreciate, as a bystander? Apart from possible moral reasons, I do think so.

Because if indeed Lyme is the largest epidemic in the world, odds are these people will get ill too, at some point. They will also stumble into the Lyme Labyrinth, apparently blindly believing the bullshit “experts” dump on them, while not trusting the ones close to them who already have experience finding their own way in it.

People are economical beings. So if you offend the best future source of information on what to do once you get trapped in the Lyme Labyrinth, odds are you shoot yourself in both feet at once. In business, this is called a “relationship half life”: if you don’t invest in your relationships, they will produce nothing.

Do you really think that you will be entitled to be helped by people to whom you have made perfectly clear that titles such as "friend" or "family" are void of meaning, if you treated them like this?  

A free course?

The market for lectures and courses for all kinds of ways to be in the Present, to learn how to ask questions, to let go of prejudice is still increasing, to be Mindful or rather to have an empty mind was still one of the largest consumer markets in 2015.

But why pay, if you can get a free course nearby? If you know someone with Lyme, you can get a Masterclass.

Costs: giving up your opinions and the fake security that everything is known by (self appointed) experts. Which might not be a real loss after all. As Einstein put it, opinions (which are hardly ever "your own" anyway) are just a set of prejudices acquired before the age of eighteen. 

If opinons are shared in a group, they are mostly called "common sense". The opinions about Lyme and the people who have it, could therefore better be labeled as "common nonsense". With devastating results for your relationships with seriously ill and litterally maltreated people. 

My wish for 2016

An illness such as Lyme is also a major chance for intimacy, if you'd ask me. Most of the fake stuff people put on in "normal life" has fallen away and what matters most remains: the desire to live, speaking one's truth and vulnerability. I never met a group with so much potential and courage as the group of people with chronic Lyme. This is why I find my work very satisfying. 

So my wish would be for the (still) healthy people to take this chance. Would you like some help to find out how to take it? Then get your Priceless copy of Shifting the Lyme Paradigm and enjoy your renewned relationship in 2016. 

If you'd like me to elaborate on the theme of intimacy, lemme know in the reaction section. 

Cheers 

Read 3444 times Last modified on Tuesday, 26 January 2016 20:44
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