I remember when I was younger and had Fibromyalgia and episodic migraines I thought very differently about my illness than I do now. I remember taking my first Philosophy class and being introduced to Rene Descartes the famous dualist where the mind is separate from the body.
You have a mental substance and a physical substance. Connected, of course, but separate. And when it came to my illness I was very fond of thinking this way, even though when it came to philosophy I thought otherwise. But I very sharply defined my Mind and my Body as these distinctly separate entities.
Dualism
I am aware constantly of pain and therefore location of pain, intensity of pain, expectations of duration of pain, what my level of functioning is with it and location of my body and how that relates to my pain. This isn’t counting all the other symptoms I am equally aware of. It just points out I have far more constant awareness of my body. So much so I actually engage in distraction techniques to lessen my awareness of it.
Most people have awareness only based on needs of the body and the senses. So the body is far less intrusive. This automatically creates a stronger sense of dualism. There is me and the body preventing the me from enacting what I want to do, limiting my actions, inhibiting my actions, compelling me to consider or plan my actions. It isn’t just me acting. This added step of considering ‘well what does my body think about that?’ is suggesting I (that is thinking) am separate from my body (that is feeling the pain).
It is an illusion of course. It is one we perceive because of our Attention to our bodies additional considerations and needs but does not change the fact that classic dualism categories of ‘mind’ and ‘body’ can be equally affected by chronic illness, and pain in fact, and affect each other in quite unexpected ways. Like it is rather hard to say just where pain Is. Is it in your the nerves of your foot? The part of your brain sending the signal to the foot? Or the part of the brain communicating with that giving you the reaction to pain? Or all of them. What about the chronification of pain? What about the process of suffering tied to pain? What abbot our perception of pain? Our reaction to pain? Our attention to pain? And how they vary in specific circumstances in research? Turns out pain is a rather complicated thing indeed.
The body
Brilliant, I thought. I will think of myself as mind. And this body as separate. This thing I am dragging around. That is failing me.
My Body had betrayed me. My Body had failed me. My Body was undependable and unpredictable. It had clearly demonstrated it had Limits. It gave me Pain and discomfort and Fatigue.
I knew it would always be like this; a burden I had to bear. A shackle limiting my options in life. Making me choose things carefully. Plan things carefully. Limit how much I could do things with my peers. How much fun I could have. Limit what I chose to do with my future and what jobs I chose to take. How far I could walk even. It wasn’t the enemy by any means but it was simply something that caused me problems and was an obstacle I constantly had to get around.
The mind
My Mind would not fail me. It was that on which I could succeed in a career, even though my body had failed me. Even though I knew this theory was not completely solid because both migraines and fibromyalgia caused ‘mind’ symptoms like brain fog, memory issues, my very well known absent-mindedness … these did not stop me from being intelligent, from learning, from succeeding in my studies and would not stop me from perusing my future goals and ambitions. (well, all of it would in fact stop me eventually, but I didn’t know how severe migraines could get. I could not see the future and MS on the horizon.) I was still Me. My personality was still Me. My mind would adapt and cope and change, but I would still be Me. And I would still be able to Think. And be creative. “I think therefore I am” and that body business must be endured.
But then what?
And I think to some extent this helped me cope early on. To understand that not every aspect of who I was, was affected. That I could still do things and succeed with my illness. But it is only a limited belief structure because pain gets worse, symptoms get worse, and clearly that ‘mental’ realm is affected…And, man, it was. Memory, attention, concentration, brain fog and emotions. How I adapted and therefore how I thought about myself and chronic illness and pain. How I coped. My resilience. My very personality adapted under this fire. And still I thought in this fog, this fatigue with this impaired memory and slowed processing speed.
And it takes and takes and takes…
And then what? What then of my identity? My very concept of self?
What happens as you get older
Years and decades go by and bit by bit this distinction falls apart and you firmly understand that mind and body is a very relative distinction. They are so interconnected that we often tend not to think about all the ways one affects the other. Even though there are clear cases of it.
It is about the internal definition of how I looked at my my illness. As this force exerting its influence on my body. But that my ‘selfhood’ remained intact which you think of as your mind, thinking, personality. All the things that are in fact affected by illness to some degree or another but clearly I wanted to think of it as just ‘pain’ and just something that would limit me in the ‘physical realm’ of things. Our selfhood adapts a great deal while we cope and that in-itself causes it to change in many, many ways. It would not be called ‘coping’ otherwise. The me decades ago would not be able to cope with the sort of existence I have now if it suddenly befell her because I have adapted in many ways. Ways we often do not even acknowledge. As if those changes and strategies we have picked up are not fundamental to our adapting, living and coping with an invisible disability. All these little ways we learn how to get through a normal day around obstacles no one else perceives. Pretty amazing. Vastly underestimated. And in some ways it became the most problematic and frustrating when it was obvious my illness and pain alone affected that realm I thought it would not touch. My clarity of thought. My focus. And of course with complicated migraine aura… my communication and ability to use language and recall things and words. It feels then like your illness leaves nothing untouched. Nothing sacred. Nothing that that is not limited and an obstacle and a struggle.
The most difficult compromises I made were to compensate for these issues and work around them. Understand that the mental realm was just as affected as the physical realm whether I liked it or not. I also liked to believe the emotional realm was ‘brief’ little lapses due to extreme pain and that everyone would feel depressed when in acute pain but eventually I had to acknowledge that coping involves emotional wellbeing. Not surprising when you think about chronic pain, pain and insomnia, pain and emotions and roll that all together.
Embodied Consciousness
Eventually, you just go fine, fine. I am not a Mind or a Body. I am an Embodied Being and this Embodied being has an illness that affects its everyday states of affairs. Physical affects mental. Mental affects physical. Both affect the emotional states. And when we accept this we can understand how many treatments may be beneficial.
Think of Embodied Being in the world or an Embodied consciousness as the fact we, our consciousness and body’s are designed for goals, needs and actions combined. That we are also not just brain states but sensorimotor experiences combined. Our senses mean things. Our postures, our gestures, and our movements (behaviours) affect our mental states. How we perceive and Interact with our environment with our senses are important. Not only that, but we our embedded in our environments that we interact with.
It isn’t just mind-body connection. It is brain-body-environment connection.
How does this view impact how I see chronic pain and illness?
It makes me take a more rounded view of how I perceive how I move in the world. It is my mental states/emotional states interacting with my physical states interacting with how I move in the world. And how I think about moving in the world.
I know my sensory experiences affect my mental states. My mental states affect my body. My environment affects both. How I move in the world with pain depends a great deal on my sensory experiences/mental states. And this is a constant loop- Body-mind-world. World-mind-body.
The reason I like this theory (for my view on pain and chronic illness in the world) more than believing I am a distinct mind and body is that I know the world is not separate from me. I know I am embedded in my environment and it impacts my existence and impacts my chronic illness. I know as well the mind-body connection is deep. One impacts the other and vice versa. In a constant interaction that cannot be separated.
Environment/world
We are constantly how embedded we are in the world. How we have to think about out environment and how it impacts our mind and our bodies before we act and while we act. We think about position, action, distance and force. We think about movement, standing and siting. We interact with people and we react to situations and that impacts us in the mind and the body. Sounds, scents and noise can impact us. Yes, the environment is a factor of our embodied beings.
And most definitely saying understanding that we are not dualistic entities makes a great deal of sense when you look at any disease. Symptoms are multifaceted. Impact from coping is multifaceted. Coping is multifaceted. There is my mental wellbeing. My physical wellbeing. My emotional wellbeing. And they are all threaded together.
Thoughts
I just need to seek improvements in this embodied whole that improve my overall quality of life in some fashion and help me cope in some way. To that end, I must understand that the battle to fighting pain is actually on all fronts… mental, emotional, physical, my entire being, consider the world I move in, and that any slight improvement to my quality of life is something of an achievement. I aim to improve the manage the pain in any way I can such that my overall wellbeing is improved. By inches if need be. Day by day. Pain gap by pain gap.
Chronically Nikki 
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