How to talk about stress without implying psychosomatic illness

ElephantNerd

ElephantNerd

Established Member
Hi, this is my first discussion thread so mods pls tell me if there is another thread I'm missing that covers this topic.

I'm trying to figure out a good way to discuss with family, friends, and medical providers the relationship between stress and ME and POTS/dysautonomia. Obviously ME and POTS/dysautonomia are not caused by stress. But stress doesn't help and can worsen flares, at least anecdotally speaking here.

For hyper adrenergic dysautonomia patients, I imagine that therapies that help down-regulate the sympathetic nervous system could potentially have benefits (citations needed and welcome!!)

but how to tease apart the difference between this situation vs using CBT to overcome symptoms like in the FND approach?

The closest I can think of is comparing to cancer. Stress doesn't cause cancer, but it can open the door to biological conditions that facilitate onset and worsening of cancer. Reducing stress won't cure cancer, but it certainly won't hurt, and may even help treatments work better (my research knowledge on this is fuzzy; this is all layman talk). But cancer is not caused by stress, and curing stress won't cure cancer.

Corrections to my terminology welcome! And papers also welcome!! I'm a complete rookie here so pardon my ignorance; I'm still learning about all this. I have some experience in allied health, including a little experience working in a lab doing research, but absolutely ZERO experience in studying MECFS academically, no biochemistry, etc. so I can use all the help I can get in figuring out how to talk about all this!!
 
I'll never forget when I holidayed at a very quiet spot at a beach camping for 2 weeks many years ago far away from the hustle and bustle of the city where I live. When I arrived home there was a very deep feeling of utter quiet and stillness in my body. Every cell felt quiet. It was like I had brought the slow quiet pace from the beach home with me. I was still in my severe years at the time.

So city life can aggravate the ME as would be expected I guess.

Edited for spelling correction.
 
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I think that a good starting point is the idea that you understand how the illness works and its interactions with other things better than anyone simply because you can observe them all the time, while other people, including doctors, often struggle with this because the illness is subjective and they do not have access to the subjective experience. As result they tend to come up with false ideas, for example reversing the causality between between physical illness and psychological symptoms. Unfortunately these false ideas are sometimes perpetuated in books and articles.

I believe that the psychology of believing in psychosomatic explanations also often involves wanting to believe in what makes them feel comfortable and is not threatening to them (their professional credibility, their emotional well being, etc). People don't like unsolvable, unexplained problems and will be drawn to alleged solutions and explanations, even if they have little merit. This is where the emotions come into play. So it's useful to explain how your belief in a physical illness helps you manage the situation better. You have to frame things in a positive way and maybe leave some things unsaid.

If I were to talk about stress, I would say that having the illness is stressful and reduces one's stress tolerance and that it's useful to pay attention to manage stress levels and that this is how you can live better with the illness (this leaves unsaid that there is no expectation of recovering by reducing stress).

One can also say that the illness has ups and downs and with good management one can appear relatively well for a few hours every day, and that this means the patient is doing a good job and has understood things correctly (we leave unsaid that observing apparent wellness does not mean the patient is faking, falsely convinced of being sick, not as sick as they claim, etc.)

You can't change everyone, sometimes people want to your illness to be psychosomatic because it gives them permission to act in the way they want to act. If the illness is your fault and self-inflicted then other people are not morally obliged to provide the support that social norms dictate should be given to sick people. If someone doesn't want to be supportive you won't be able to persuade them to be supportive, except maybe if you can show that being supportive is the better solution for them too.
 
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I think stress is too vague a term to be useful. It was originally used by Selye to describe a response to external stimulus, not the stimulus itself. It is also used to mean the stimulus - losing a parent or being in a city you hate. For some the city is great. Most of the literature on this sort of thing is uninterpretable. I doubt it has much to do with cancer, other than that people with cancer need emotional support.
 
Yes, stressors like noise, difficulty accessing medical care, being bullied or neglected, not having basic needs met, bereavement, financial problems, all make living with ME/CFS more difficult, and some can precipitate crashes or general worsening. But they are not the cause of ME/CFS, and a totally stress free life is not a cure.

Maybe the simplest argument could be that anything that puts extra demands on body or brain, including exercise, thinking hard, sensory stimuli and emotional stressors, even digesting food, may contribute to making symptoms worse, and may cumulatively precipitate PEM.

Stress hormones may temporarily enable pushing through but then be followed by a crash.
 
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ElephantNerd said:
but how to tease apart the difference between this situation vs using CBT to overcome symptoms like in the FND approach?
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To me the difference is given by what Trish says - stressors makes things worse and it is common sense to try and manage life around that but we don't have any reason to start invoking theories about how the body responds - simply because we don't know enough about it.

I am not sure that this has anything in common with trying to persuade people to 'overcome' symptoms, especially if based on pseudoscientific theories about how the brain works. Theories don't really have any place in any of this, I think - at least not until there is an evidence base worth having.
 
A further thought. The list of physical, mental (thinking), sensory stimuli and emotional stressors that cumulatively contribute to symptoms worsening includes enjoyable things. We can get just as big a crash from attending a wedding as a funeral.
 
I think the word “stress” is too loaded with connotations.

Could you explain your position using terms like “sensory overload” regarding noise, light, conversations etc and also the “mental load” of monitoring yourself, identifying triggers or overload, dealing with them, recovering from them.

Children and dogs can hear high-pitched sounds that most adults can’t hear at all, same principle for us, a normal amount of sitting and conversing hurts us in a way it doesn’t for others. Nobody wants to live by a building site with drilling, dust and noise all day, well the normal world can become like that building site for us very easily.
 
I essentially just say that «everything has a cost, and my budget is extremely small».

It’s a simplification, but I’m an economist so it fits with my way of thinking.

The two main issues I run into are: 1) people don’t understand that everything means everything, because there are so many trivial things the don’t have a conscious relationship with, and 2) people don’t understand how small the budget actually is.

And people tend to assume that the mental burden of trivial things is larger than what it is. Ironically, the mental burden of the paternalisation and distrust is a lot worse. I people would stop making assumptions about my mental health, my mental health would be a lot better.

And stop assuming I don’t know how to take care of myself!

And stop trying to be involved in everything. I need help with the things I say I need help with, I don’t want anyone to micromanage my life. It’s already limited enough as it is.

Rant ended..
 
I have found that about 99% of uses of the word, or the general concept, of stress can be substituted with exertion and actually gain meaning. It's an energy demand on the body, and as the brain uses energy much the same way as the rest of the body, cognitive exertion is just as draining as physical exertion.

From years of reading tens of thousands of comments from people experiencing this, and the same out of professionals and in the literature, it applies equally to both. Very often professionals use stress to mean all sorts of vague additional things, but generally it boils down to worrying. However when you look at what they actually mean, I find that exertion is a much more useful term, and concept. They mostly use stress because it's how they're taught to think about this.

Stress should be reserved to bad exertion, a demand on our energy that we do not want. A similar level of exertion can actually be invigorating, from playing sports for example, or bad, if it's something one either 1) doesn't like, 2) doesn't want to do, 3) doesn't have the time to do, or simply prefers to be doing something else.

In our case it's especially bad because, as Trish noted, good exertion, the kind that we very much enjoy, can still worsen us, because of PEM. This is one of many problems and contradictions that arise from using a very generic term, stress, to mean very specific things, more often than not it refers to mental anguish of some sort, or just general vibes, or, really, whatever. The term is used willy-nilly to great confusion, most of it seemingly intentional (look at the hand behind the magician, not the one moving around causing distraction).

If all this could be sorted out, a whole lot of good could be achieved, but there is simply too much baggage and that makes it very hard to do a course correction.
 
Trish said:
A further thought. The list of physical, mental (thinking), sensory stimuli and emotional stressors that cumulatively contribute to symptoms worsening includes enjoyable things. We can get just as big a crash from attending a wedding as a funeral.
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Yes, I love living in the city but noise is a huge problem for me and there are bound to be other things I can't think of at the moment.

I have often caught a bus or train at rush hour in the morning just to pretend I am going to work along side everyone else. The feeling of normalcy (even though pretended) feels so good!
 
Yes to positive events having just as much of an impact as negative ones. I’d use going to football matches as an interesting example where if my team plays well and wins despite having a much more enjoyable afternoon my PEM will definitely be worse than when they don’t do well.
 
ElephantNerd said:
Help, what does BPS mean?
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Biopsychosocial. It was invented years ago to imply that all diseases have biological psychological and social aspects, which they do. But it has come to be used specifically for illnesses that doctors want to psychologise. It has the advantage that when it comes to explaining the illness you can wave your hands in all directions at once and pretend you have a deep understanding despite the fact that you have none and just assume everyone needs psychotherapy. The irony is that the biopsychosocial enthusiasts are often the strongest advocates for pseudoscientific 'biological' aspects of illnesses like ME/CFS, like hyper mobility and 'mast cell activation'.

Unfortunately it is also the initials of the British Psychological Society.
 
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