Developing the stressful ME/CFS personality

I have gained most of my knowledge from the books I recommend and provide on the page Self Study. Books like ‘The intelligent body’ from Kyle Davies and ‘Reverse therapy’ from John Eaton and reading up on Dr. Sarno’s work on ‘bodymind’ symptoms. Or the book “The Great Pain Deception” from Steve Ozanich that is one of the most complete books about the bodymind. Deep meditation and trial and error in my recovery made me have an interest in the psychological perspective of disease. Books like ‘the anatomy of loneliness’, ‘When the body says no’ or ‘Reinventing your life’ are great to understand how the psyche can develop diseases. After reading, applying and coaching people with these ‘bodymind approaches’ I slowly came to understand how deep the rabbit hole goes. I might still edit my perception of what ME/CFS is exactly, but I am convinced that this explanation is close enough to the truth.

The inability of the nervous system to maintain homeostasis.

The nervous system in a person with ME/CFS has lost the ability to maintain homeostasis. This means that the stress mode or the ‘fight or flight mode’ is dominant in the autonomic nervous system. The balance or homeostasis between the ‘fight or flight mode’ and the ‘rest and digest mode’ is disrupted due to an overwhelming amount of stresses that pressured the nervous system at one moment. The stresses are accumulated in the body and disrupt the balance even further. The accumulation of stress creates all kinds of symptoms next to complete exhaustion.

Stresses on the nervous system

The different stresses that can cause the imbalance vary from person to person, but there is a commonality in the personalities in people with ME/CFS. These stressful personalities used to thrive in stress and self-pressure. This behavioral pattern has developed in childhood and the identification with these traits are probably the cause a person can’t switch the nervous system back to homeostasis. (which becomes harder and harder after a while.) To understand the development of these types of personalities we have to re-evaluate all our behaviour as well as unresolved emotions from childhood.

Emotions

The ‘bodymind’ is always giving feedback to us in the form of emotions. There is no such thing as a positive or a negative emotion. Emotions are there to protect us from a path that would interfere with both short-term and long-term survival.  Some emotions like anger, fear and disgust are sent to guide, warn and protect. Other emotions are feedback that we are on the right track, like joy. Whenever we feel joy, our health improves, we raise self-esteem and are self-actualising, the top need on Maslow’s Pyramid.

Rough start in life

As a child we have all learned some sort of conditional love, most people with ME/CFS and Fibromyalgia have had an even harder childhood and couldn’t safely attach to their parents. Others develop the same patterns later in life. A group like the parents or other authority figures pressure the child to conform into a certain behaviour. The child develops an ego and identifies with its tactics to please the different groups.  Children are always loyal to their parents, peers and teachers as the need for connection is one of the strongest urges in a human being. A fragile being learns to go against all ‘bodymind’ signals that something is wrong.

The so-called negative emotions are often not accepted by others and the child learns to play the role of the desired child. This way the child can still get some small portion of the love, connection and safety it needs. To distract from the emotions and to figure out strategies (coping mechanisms), the child will be involved in excessive thinking, this becomes a habit until later in life. Thinking and burying emotions (coping mechanisms) are very stressful for the body. Over the years the stress bucket will slowly be filled, until the bucket finally flows over. You have created, over the years, a stressful personality. If you would ask a person with ME/CFS if they experience e.g. the emotion or feeling of anger, fear, shame, unworthiness, loneliness etc. they would most likely hardly ever notice the ‘negative emotion’. Instead the negative emotions are experienced as bodily symptoms.

The first bodymind symptoms

My first personal symptoms were at a very young age, I had constant belly aches and psoriasis when I was 6 years old. I have had sleeping issues my entire youth. Later in life these symptoms disappeared as the stress became less in my family. Since I was a teenager I have had digestion issues (IBS) and dandruff. Meanwhile I was always playing the role of the happy entertainer. Entertaining was my coping mechanism, as I wanted to improve the atmosphere at home. By the age of 2, I had become the family entertainer. A job that I continued in my adult life when I worked as a comedian. Even today,  whenever I am in an emotionally difficult situation, I feel the urge to make jokes. Being involved in these types of coping behaviours, makes me experience fatigue nowadays. When I feel the urge to suppress my feelings by distracting myself via coping mechanisms, I am denying a part of myself. In my worst years, the intense fatigue was not only caused by an occasional negative emotion. I had hundreds of unconscious coping mechanisms, my thoughts, my desires, my urges, everything was based on coping.

Being caught in the ‘fight or flight mode’

All this stress is causing the body to be in the so called ‘fight or flight mode’, our energy is used for urgent survival methods, like clear thinking and strength, while other bodily processes like digestion and the immune system are put on hold. This state of stress and survival is only meant to last a short while, until the danger has stopped. Our society and poor parenting has made this state into something almost permanent for lots of people. According to Dr Joe Dispenza’s research, the average adult spends 70% of its time in survival mode.  As a result we will develop nutritional deficiencies and a weakened immune system. Sleep will become unrefreshed and the body enters a downward spiral. When you are in the fight or flight mode, you will slowly forget what it is to properly rest. Your mind will feel agitated and in constant need for stimulation. You will be involved in deep and constant thinking. Braking this pattern with mindfulness activities and meditation will help your nervous system to calm down.

Coping mechanisms

As adults, we are still using the same coping mechanisms to avoid our emotions as when we were children. This is what we have learned from our childhood. A great book to understand your own behaviour is ‘Reinventing your life’ from Jeffrey Young. This book is completely about coping mechanisms and the pain hidden underneath them.

Denying your own emotions for decades can only happen when the child has learned that they are not valid. And by ‘they’ I mean both the emotions and the child itself. Every time you have denied something about your nature, you have fragmented a part of yourself. If you see yourself as a strong and independent person, you have most likely buried the part of you that is weak and depends on others. Being strong and independent is in this case a coping mechanism to deal with a deep pain inside of yourself. This pain is caused by rejection and shaming parts of yourself, first by others and later by yourself. By acting strong and independent in this case, you are enraging what is in psychology called ‘the inner-child’, the part of you that feels weak and dependent.

This adult will still be looking for love, connection and safety as the emotional body is still a little child in this specific area. It didn’t receive what it needed. Engaging in all these coping strategies is again very stressful for the body. The rejection of the inner-child causes painful emotions that remain in the unconscious. When you are seeking your initial emotional needs via coping strategies whenever you (unconsciously) feel a negative emotion, you can develop a general feeling of not being good enough, loneliness, etc. These feelings have nothing to do with your circumstances, but are the result of not seeing parts of yourself. This is not something that happened in the past, but something you relive every day.

Another downside of coping mechanisms is that it will never give you what you were looking for, emotional relief. It functions to keep you away from the emotions and feelings and although the mind wants you to believe that you can get something (in the future), this is never the case. After years this will lead you to more frustration. Most people then start to reject their frustration by adding another coping mechanism on top of all the others, positive thinking.

Is ME/CFS an auto-immune condition?

Almost everybody with auto-immune diseases, ME/CFS, Fibromyalgia and back pain is reporting a stressful incident or period as the start of their symptoms. This could be e.g. an accident, a surgery, a loss, a break-up or a virus. This tells me that all of these conditions are stress-related. Just like with an auto-immune disease and back pain, people report that the symptoms can fluctuate a lot based on events, situations and triggers. This is the ultimate indication that all these types of diseases are what used to be called psychosomatic disorders. Because of the negative assumptions that this label has, together with the need for sufferers to be taken seriously, I would like to refer to these types of conditions as bodymind symptoms. This diagnosis is good news, because now I can guide you to reverse the symptoms.

The start of Chronic Fatigue Syndrome

After a stressy period, the stress bucket of negative emotions in your body becomes full. The conscious mind has successfully blocked these stressful emotions and feelings over time, but the final stresses will let the bucket flow over. Since the immune system is compromised, the body doesn’t have the power any more to get rid of infections.

When we finally return to the rest and digest mode of the nervous system, the immune system will finally have time to heal you. But there are just too many stressors that need to be dealt with. The immune system is too weak and gets stuck in a loop of fighting pathogens that are reproducing faster then the body can deal with it. This causes another form of stress and activates the survival mode again.

You have been coping with life because of a fragmented emotional body, the defragmentation of your emotional body should become your priority. When people are forced to stop their normal lives, they all tend to become aware of the repressed emotions that they have buried in their bodies. When you can’t run away anymore, you are forced to feel what is actually inside you. This often hits them by surprise and causes them lots of additional stress.

Deep rest and accessing the ‘rest and digest mode’

The stresses that you get from the symptoms heavily impact your nervous system and create secondary symptoms. Good quality rest can (temporarily) decrease symptoms. The problem is that most people with ME/CFS that I speak to, can’t allow themselves to rest properly. As much as I would love to pace you back to your old life, we would probably need to reduce your activities first. It’s not about how much you can do in a day, but rather how meaningful the activities are and how good the rest in between is.

Neuroplasticity

A person might feel the need to retire from social activities and chooses to continue with work. This is however not the response the inner-child wants you to take. As you become more isolated and stuck in a vicious circle,  you are moving further away from the bodymind’s desired outcome. It will continue to send heavy symptoms. This is also the phase where most people with ME/CFS start to expect their fatigue. By focussing on the symptoms, the neuro pathways will make it easier for you to feel the unwanted sensations. By scanning the body for symptoms, the mind is actively recreating a stressful event, based on past experiences.

In NLP/ brain retraining variations you can learn to undo (part) of your symptoms. By actively disrupting stress patterns by calmness, you can aid your calming down pathways. By accessing different neuro-highways you can relearn to have the parasympathetic nervous system as your automatic state of being. This is called neuro-plasticity.

If you however use this technique to suppress the fatigue, the bodymind usually continues with even harder symptoms, like panic attacks. The techniques then shouldn’t be used to suppress the fatigue but to soothe the inner-child.

It doesn’t as well mean that these techniques are the solution for everything as there might still be a reason behind the perpetuating stress response.

TMS and Diversion pain syndrome

Dr Sarno developed a strategy to help thousands of people with chronic pain. The idea of the treatment was to only give their ‘unconscious anger’ a voice (as well as other negative feelings and emotions we don’t accept). He stated that most people with chronic diseases have a split of the body and the mind on the emotion of anger or rage. The unconscious creates symptoms to distract you from the emotions which are still stored in the body. By only becoming aware of anger (and other powerful emotions), 75% of people can hijack the unconscious diversion method and get pain free within 28 days. Overall his success rate of healing the most desperate cases of society is 98%. Accepting his diagnosis turned out to be the most crucial part in their recovery. Almost all recoveries had a previous diagnosis of an abnormality in their spine. After scanning the spines of healthy people, they found out that the abnormalities are a natural result of aging and present in everybody. The surgeries that normal doctors recommended were in most cases not successful as there was always an excuse and further surgery to be done.

Inner-child vs inner-adult

In a simple analogy, the human psyche consists of the narcissistic inner-child that wants instant pleasure and feels very vulnerable, the inner-adult that represents the parent and wants you to conform to society with strategies so you can be accepted by others, and the ego that wants you to survive and create an identity. In people with bodymind symptoms the inner-child holds all the pain and rejection, the ego choses to deal with this by prioritising the strategies from the inner-adult over the inner-child. This means that a person with bodymind symptoms has a certain type of personality, like being a goodist, a people pleaser, conscientious and a perfectionist. This kind of behaviour enrages the inner-child. The anger is stored in the stress bucket of the body and when it becomes almost conscious, the unconscious will protect you from it by creating symptoms. The symptoms are distractions and work only when you believe that something is wrong with you. The less you believe that there is structural damage in your body, the less its tactic works.

When the body says no

In the book ‘When the body says no’ the author writes about studies that have proven the link between boundaries and illnesses. When someone is unable to feel, connect and act upon their negative emotions, healthy boundaries will cease to exist. Sometimes a person is so desperately trying to connect with others that all the red flags are being missed by them. Instead of saying ‘no!’, their body will say it for them.

What is happening in the body

The nervous system switches to fight or flight mode due to accumulated (emotional) stress. The limbic system in the brain detects an undesired situation, which can be caused by the split between the body and the mind. The mind is not reacting properly to the limbic system. It then stimulates the hypothalamus, which stimulates the pituitary gland, which stimulates the adrenal glands, which changes the muscles, blood circulation, digestion and the immune system by a slight oxygen deprivation and tension in certain tissue like e.g. the mitochondria.

The changes in the circulation causes brain fog and dizziness. Changes to digestion are causing irritable bowels. Changes to the immune system can cause infections, swollen glands, sore throat and feverishness. The hypothalamus synthesizes the optic nerve and disrupts the “body clock”, which can cause blurred vision and light / sound sensitivity as well as sleep disturbances.

The changes or tension in the muscles, makes the mitochondria burn up ATP and glucose storage too fast.  The muscles will then switch to an inefficient fuel source with the effect of lactic acid as a by-product. This causes fatigue, muscle pain and headaches and justifies the feelings of patients who claim that they feel as if they had run a marathon. Other diversion pain symptoms are muscle weakness, nervous pain, dizziness, nausea, eczema, back pain, joint pain etc. After a while the balance in the nervous system will be easily disrupted. The symptoms cause you to feel stressed and the condition has slowly become chronic.

By a misinterpretation of the symptoms, you might think that it urges you to take rest and decrease your social life.  You will then get caught into symptom checking and expecting symptoms. This will lead you to a negative spiral, as the unconscious stockpile of negative emotions from the ‘bodymind’ will increase the intensity of the symptoms. Isolation is probably the opposite of what you need.  You will need to learn to listen to your bodymind instead of your symptoms. But also allow yourself to rest properly, switch off the stressful thinking mind and involve yourself in meaningful activities to balance your nervous system.

The purpose of pain and fatigue

People that never experience pain, usually don’t live very long. Pain is there to protect you from harm, so your body can keep functioning. People who have run a marathon usually speak about hitting ‘the wall’. This fatigue is a signal that the energy reserves of the body will be depleted sooner or later if you continue with running. Experienced runners know exactly how much energy they have and don’t need this protection mechanism. When ‘the wall’ hits them, they know they will have enough energy to complete the marathon. People with ME/CFS experience ‘the wall’ every day. Just like pain it serves to protect you. From what?

The split in the mind of a person with bodymind (or limbic brain) symptoms is between the inner-adult and the inner-child. Frightening emotions from the narcissist inner-child are a death threat for the ego (the self image) and the inner-parent and they will come up in the form of symptoms to protect you. This usually happens in symptoms that scare you and make you obsess. Obsession is the distraction, distraction is the protection.

Your egoic personality makes you involved in coping mechanisms like pleasing, impressing, learning new things, knowledge, etc. These tendencies make you enter the ‘fight or flight mode’ to escape the unwanted and unconscious feelings. The limbic brain knows about these almost conscious emotions and feelings. Everytime you involve yourself in these personality behaviours you send the danger signal to your brain and the limbic brain creates symptoms. After a while, both the coping behavior and limbic brain reactions become hard-wired and your automatic state.

Pride

For me it took several years to accept this theory. Like everybody else who becomes chronically ill, I had a strong developed ego. The acceptance of this theory was anything near easy as there were always people screaming something else and getting very popular with it. My acceptance of this understandance was a gradual process and when I was finally ready to accept it fully, my health improved very fast. Bruno Klopfer, PhD, a pioneer in the field of health and psychology was able to predict tumors based on the severity of one’s ego. His conclusion was that the more energy is being invested in the ego,  the less energy a body has to heal itself.

Unlearning you behaviour

It’s hard to unlearn the ‘normal’ suppress behaviour, by going back to the period that the symptoms started, you can start to understand the desired outcome of the bodymind. Unlearning what you have learned and finding different ways to express your emotional needs will take time. Disidentifying with the stressed mind isn’t easy. Eventually you will need to not be intimidated by the symptoms anymore. Instead of focussing on the symptoms, focus on the emotional body. It’s usually not that hard to see what is underneath the symptoms, once you’ll get the hang of it. These are all painful but very rewarding processes you will have to go through. Joe Dispenza’s book ‘How to break the habit of being yourself’ is about changing your stressful personality and is available for free on my self-study page.

Holistic approach

As you might understand, to recover, you will need a holistic approach. One treatment form on its own is not enough. There is no magic pill or magic treatment that will make you recover from ME/CFS. Unfortunately this also makes it very hard to recover, because as long as you are in the fight or flight mode, you won’t easily choose an holistic approach. As long as you identify with your stressful personality, you would want to go back to your old life. As long as you reject the psychosomatic explanation you won’t recover. Psychosomatic or bodymind symptoms really don’t mean that you make it up. The pain and fatigue created by the unconscious mind are known to be the most extreme of all pains and fatigue. Yet at the same time, there is nothing wrong with your body and you can heal.

Four components of ME/CFS

In short, there are four components that create ME/CFS. First there is the original trigger(s) from your psyche, this might be very complicated and can be different for anybody. Then there is the fight or flight mode. This means that a person with ME/CFS has a stressed personality because of their childhood and has depleted their adrenals and can’t rest properly. Third, there is neuroplasticity. After a period of focusing on the symptoms, the mind makes it easier for you to feel them. Any successful and holistic approach targets those three components. While the stressor may vary from person to person, the other two components are the same for everybody. Fast results can be expected by working with calming down the nervous system and neuroplasticity! Last but not least, there is a negative build up of toxins in the body, due to a malfunctioning immune system.

To make it even easier, you need to re-enter the ‘rest and digest mode of the nervous system. You can do this in several ways, like: hypnosis, meditation, laughing, joy, peace, great sex, kissing, neuroplasticity methods, massages, etc. Check out my treatment page, which also includes treatments to work on the personality and behaviour that causes the symptoms in the first place.