Nocebo Effect
A conversation with Lilian Sjøberg
In this post I include a relatively recent conversation with Lilian Sjøberg, a therapist and coach with a different way of thinking. She has been investigating how far you can go towards reducing the symptoms of a chronic disease using trauma therapy. It is an ongoing study, and every person is unique, so there is no one set answer but, from my personal experience, I can say that I have recovered functions that I feared were lost for good.
In 2012 doctors gave me a devastating diagnosis with a disease that's considered incurable. So I set out to prove them wrong.
By 2016 I was symptom free.
Unfortunately, several traumatic experiences set me back, and the cycle started again. After a few years, at my lowest point, I encountered Lilian Sjøberg.
Working with Lilian has brought me great success. It renewed my sense of self empowerment and restored my hope. Appropriately, her programs all live under the umbrella title HOPEshortcut.
I want to help her get the message out that it is possible to reduce symptoms and even become symptom free from most diseases. As the banner says, you can regenerate your health.
If would like more information about the courses she offers and coaching, here is a link.
Here you can read her interview with Gary Sharpe.
Also please check out
and on Substack.NOCEBO EFFECT
Sofia and Lilian:
Sofia: you know what, I was thinking about your approach and I’m feeling it right now, that you should never—like who the hell do the doctors think they are telling you that your body can’t heal. Yeah really, I mean that’s true. I’m suddenly angry about that because it does a real— excuse me, this grotesque American expression, it’s a mind fuck. Yeah it really is.
Lilian: and you know especially in the U.S where you have sort of what can we call a way of thinking that everybody is a free person and can do whatever they want and become a millionaire and that sort of thing. And then there are some people saying you will never have what you want and become better, only worse and worse, it’s pure Nocebo effect.
Sofia: absolutely and I really, for my own self it’s shocking, because most of my life I never let anybody tell me what to do. Now somehow doctors have achieved this god-like status where they’re like the priesthood of your body, and the medical knowledge. And you know you have to go to them for their blessing to live by.
Lilian: it’s like in the start we have, maybe not in your family, but most families we have the father and mother as our gods, they know everything, and we copy-paste everything we see, good and bad. And then they, the parents, sort of give the responsibility to doctors and say, now you are in charge of my children’s health. It seems like the more modern people get the more they want to depend on doctors. In the future we will find out that viruses are our friends and bacteri helps us to keep well, because in our body there are 40,000 human cells but there are 30,000 bacterial cells in us or on us and 400,000 viruses.
Sofia: so we’re really just sort of a container for everything.
Lilian: just a container, in Danish we call it—um, you know like when it was in the 60s, they move in 20 people into the house. What do you call it?
Sofia: a commune.
Lilian: yeah, commune. We’re just a commune that sort of contains all these things, and our immune system is the police checking in that everyone behaves and the bacteria and viruses do not get to bully the other cells. So as long as our immune system is up running we can nearly take care of anything. But when our immune system is down due to stress we are flooded with all these things because they can grow. But actually I’ve heard a lot of interviews with the experts in regards to viruses and they say that viruses are a way to develop because we change our DNA with them and we’ve been doing that the last 200 million years.
Sofia: so we mutate and it’s called evolution.
Lilian: it’s so interesting you can understand that things are exactly the opposite as you think. So it’s what we do here. What will happen if we turn everything around and say, yes of course Parkinson’s is curable, and it’s just a matter of you’ve been told that you’re not. I mean, that I do the same with Parkinson’s, turn things around and say what you have been told is a lie. What about turning things upside down and saying of course you can heal?
Sofia: what we’re speaking about now, hearing you telling me...you know first, how we started the conversation is that doctors, we’ve given doctors power. Lilian what does the Parkinson’s world need to know or want to know? Because the part about beliefs and the doctor taking the power they’ve been given from the people, that is important.
Lilian: I agree because that’s what gives them the power to have a nocebo effect, it’s like a gift that we gave to them. Here’s a whip to beat me with. So everything they say counts times 10 more than what other people say.
Sofia: even if you know that, I mean I know that. I’ve had a relationship with my body where I understood it and I treated it with herbs and I always questioned doctors. And even though I know that and I feel that way, it’s such a big heavy thing and you just, it just keeps getting repeated and repeated and repeated and repeated and repeated. It’s like they’re selling it to you basically
Lilian: yeah and I can hear it even. I’ve had a sensation with people who go back and forth between believing me and seeing how their symptoms get smaller and smaller, and then every time they have just a few seconds/minutes where they have a tremor, they jump back and they say, oh I’m becoming worse again.
Sofia: it’s really a problem. It’s just like a knee-jerk reaction. Yeah it depends you know, it’s like there’s an expression “He/she put the fear of God into you.” Yeah it’s exactly like that, like they’ve created themselves as— or we’ve allowed them to become— mythical creatures and gods.
Lilian: if these doctors could just turn it a little so they said, yeah in the past it was not the best disease to have but now we start seeing that all this exercise, all this dancing, boxing, blah blah blah it gets better and better. There’s a big study saying that you can get three times better if you do exercise four half hours a week but they are not telling you that.
Sofia: yeah it’s mostly a focus on the medication. I’ll tell you who told me about exercise was my general practitioner, not a neurologist you know. When she first saw me she said “Well do you do much movement?” I said, “Well I like to dance but I can’t really. My hips are frozen. I’ve lost my rhythm, you know I can’t really dance.” and she said “Well then just sway for 20 minutes a day, just sway.” So she is on the right track. I tried it before and that’s why, you know, last time we spoke when you interviewed me and I said my dance rhythm came back, that is a miracle. I mean it’s really weird to have that go on in your body. You know you tell your body to do something and it’s like, um what, I don’t understand.
Lilian: yeah that’s because it’s needed to keep you safe in the freeze state. How you measure your symptoms is very important.
At the start, I was advised to go into the Parkinson’s groups and listen to what was going on. Find people’s pain, and where I could help them, and give small tips and tricks. But sooner or later they would kick me out because they found out I was challenging the approved theory. So I may have been kicked out from 10 different types of groups. So what do you think about the idea that we know it’s established that the doctors cannot help people and then the alternative therapists that maybe could help people are not allowed in these groups?
Sofia: I kind of think that there are a lot of big Parkinson’s groups that don’t want to think about anything because I think it ties in with the same thing that we were saying about doctors. It’s because they want the safety of their doctor. Like I know people in those groups that have gotten better through exercise and yet they still defend only clinical trials. You know once again you’re, I think it’s, bumping up against an insidious kind of industry.
Lilian: yeah and you know, in my opinion, it’s what, 50 years of trial, and not coming closer to the root cause. Or how to solve things that come closer, with things that can help tremor, and some devices can help people. But in the bigger picture not a lot of things have happened.
Sofia: yeah there are some experiments, there’s a new kind of brain surgery. Have you heard of focused ultrasound?
Lilian: I’ve heard the word but I didn’t know it was a surgery.
Sofia: yeah it’s a kind of surgery where they sort of burn—it’s almost like they make a scar—on your pallidothalamic tract. I guess it changes the way the signals move because people lose their dyskinesias and they, sometimes they can go off medication. So you know it’s more attractive than DBS to people because it’s not as invasive. Yeah there’s no blood loss, you know, there’s no cutting. I mean there’s burning and that in itself is terrifying. You know I actually signed up for a clinical trial but I didn’t get it because my skull was too thin.
Lilian: okay.
Sofia: yeah I know that seems funny, doesn’t it? I don’t seem like that. I don’t seem like I have a thin skull right?
Lilian: but it’s good to know that. That’s why you can absorb my knowledge, that it’s easy access.
Sofia: I like that, that’s the way I’m framing that from now on. So, I took some cannabis to sort of shake me out of where I was.
Lilian: does it help you?
Sofia: I tell you it’s almost like I can see that it’s enhancing the dopamine. Because I’ve taken it, took less medicine and yet I have more dyskinesia. Like my head is bobbing around and my mouth is moving, and yet I feel relaxed and I feel less anxiety. I feel more creative.
Lilian: so what cannabis can do is, you know I think I’ve said it before, but the fight-flight and freeze slips you into your instincts, and the endocannabinoid system drags you out into the current state again.
Sofia: I love that idea. Yeah but the problem is if you use it chronically it has the opposite effect.
Lilian: yeah because there are probably a lot of side effects, and people get some benefits. Some kind of feel the effects, some get a lot of side effects. But that’s how the endocannabinoid system was discovered, because there are so many people that use cannabis or cannabis oil and they try to figure out why. And they found out there was a whole system in our body and cannabis just mimic one of the natural compounds that are signaled, using this signal, but you know it makes sense. I discovered it one and a half years ago but you know fight, flight and freeze we have known for decades. And of course, there must be something going the other way and it’s corrected. After cannabis the endocannabinoid system was named. It’s a really bad word because it should have its own name, not be connected to cannabis. I mean it’s better to give it a BETTER NAME.
Sofia: I do see your point. So when you do cannabis it’s active but what else activates it besides the cannabinoid plants.
Lilian: it’s you being safe, so that’s all I work with. That if you see a big cat, a tiger, some of them are one meter high; now if you’re a small child and you see a cat or you see a big dog, it’s like it’s the size of a tiger. So a dog is really scaring them if there’s nobody there, this feeling gets stuck into your body, it’s a body memory.
Sofia: right.
Lilian: because you will never calm down, but if there’s a caring parent around they say, oh that’s okay it’s just a dog, a dog is okay.
Sofia: this is very true. Does that activate your endocannabinoids?
Lilian: yeah so it’s comfort, it’s human comfort, it’s comfort, love, safety, care—so that’s what I do when I do trauma healing, is to introduce nurturing environments that can drag you out of freeze. So when you have a private memory this freeze is installed and stays there in your body forever. You can stay in it until we touch into it again and recreate a happy ending to the story. And then you can relax and then it can be let go, so then it is completed. The body cannot, you know, the child, see the shock. And immediately the more you go and get them you drag them out of it again. When you see the meerkat in the desert underground, where they stand up and they have a scout that’s listening to everything and it says “meep meep meep” and everybody freezes...what’s going on? And then someone, the leader, may be given signals and they run to the cave right and they signal “we are safe here” so that’s a full cycle. Up is fight, fight, and freeze and have this attention. It’s the dopamine state, being attentive and then running into the cave, using your instincts, and then “breath deeply” we managed right. And then they run out again and you have this leader looking out for danger and then down in the cave again. So they do it maybe, I don’t know 10–100 times a day. And we do the same, we are caught by shadows and noises, something, and then we freeze, and then it’s dependent on what’s going on in the situation if we get started or we calm down. Because we do not run, we do not fight, so our good manners are stopping the cycle.
Sofia: okay I see what you’re saying. Your good manners and good behavior, your supportive behavior, stop the cycle right?
Lilian: in a group session, we had a very good discussion about that but someone brought up the idea of the normal versus natural. So it’s normal if there’s a bully that teases you, you just stay and do nothing, that’s normal, or the manager is rude and says you ought to do 10 times as much or come 10 minutes earlier, you just freeze. So that’s normal but it’s not natural. In the natural world you would kick back or you would run.
Sofia: right but there’s like an artificial set of rules, a new set of rules.
Lilian: you’re not allowed to beat people up, you are not allowed to run from your job because then you don’t get any salary, and so we do not fulfill the cycle of instincts.
Sofia: yeah
Lilian: so that’s what I do in therapy. I make the last half of the cycle. I like that, a beautiful way to put that. Where you run where you are. So I sometimes have people doing shadow boxing towards an old spouse or manager or whatever.
Sofia: I have to interrupt you with a random thought that I had earlier when you were discussing meerkats, I could just see a little clip of a video going viral on YouTube, that was one of the best meerkat imitations.
Lilian: I don’t know if you can call it a problem or challenge that maybe less than 10% of people are ready to listen to this story because they have an open mindset. And maybe even a couple in this 10% think it’s so obvious that why should they read this book because they have already found out they are not limited about their health. Who we want to onboard more often are the 90% who are stuck in doctors orders. And so how do we onboard 10% more of these people without scaring the hell out of them? I think in a compassionate way. You know, to know you understand that when your body starts behaving in a way that you don’t understand, you want an answer, you want to go to somebody you know.
Sofia: so is it the biological perspective?
Lilian: I feel like it’s emotional. I’m not sure you would put it in terms of biology but just the emotion is very biological, it’s our animal behavior. It’s a group, how to live in a group, and you need emotions to keep a group together. I mean that’s why a cat is not a herd animal, because if someone is rude to them they just say “goodbye I’ll never come back” while a dog would say “oh okay, what can I do to be better, to please you?”
Sofia: so that’s animal behavior, it’s very biological.
Lilian: so all herd animals have a lot of emotions: elephants wolves, not cats, not tigers but lions are herd animals.
Sofia: they have, that’s so interesting isn’t it? Tigers are solitary, I think leopards are pretty solitary, cheetahs run together I think.
Lilian: well they don’t need so many emotions because they just say “forget you, I’ll walk away.”
Sofia: ah how I wish I was a cat.
Lilian: but you know that it’s in revealing all these things you get more knowledge to understand your feelings, and then come closer and closer to your authentic self. Who are you if we peel off all the layers of trauma and body memories and beliefs that are not supporting your values, that make no sense in a modern world. Who are you then is this confident woman who cares about interesting people to you and just disregards the rest. It’s just your largest fear, the fear of being weak, so others need to take care of you.
Sofia: but I feel even though I can do more now I feel somehow weaker now than I was then.
Lilian: isn’t it because it becomes more and more obvious because you are up running and dancing and visiting people in restaurants? So it gets more obvious because you are confronted with a situation where you are not 100 healthy. I mean if you are laying in a bed all day you’re not confronted with how it is to be in a restaurant. Okay that’s doing a little thing, small things you get confronted, that your dance movements are not as good and when you get better you’re confronted with that other people can see you a have a tremor in a restaurant.
Sofia: but I think it’s shame. So essentially it all boils down to shame.
Lilian: okay. You know, so I guess going back to where shame starts. Yeah why is shame a big thing? I think it’s different feelings for other people but for example being confronted with people you do not know, having symptoms, it’s not nice for most Parkinson’s people. And it’s because if you are on medication you can disguise your symptoms, they are away from for some hours, so people do a lot to sort of hit the time slot where they can be more relaxed due to pills.
NOTE to the reader: All RESPECTFUL comments are welcome!
lovely Valentines' Day conversation.
Lilian and Sofia are gardeners who are tilling valentines, planting good memories.
Thank you for sharing.....