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The ME/CFS Mind/Body Disconnect

Sometimes I feel like a floating mind that is trapped in a corpse that is not my own. My mind screams "love, eat, run, travel, speak, rejoice, create, be free". And my body replies "I am dead and cannot do any of those things". Having ME/CFS, we experience a constant disconnect between mind and body where our minds are wanting for a million beautiful things and our bodies cannot do any of them. And when we ignore our bodies and try to do them anyways, our bodies fight back by hurting our minds to destroy all the dangerous dreams. It’s as if our bodies kill our minds as well if we do not listen to them. So we must live with this disconnect where we live in a constant state of longing and dreaming and wanting because our bodies cannot answer the calls of our minds.

I want my mind connected to my body again. I want to just think and act like I used to, never pausing with caution or reflecting and observing even the most basic of actions to make sure I do not do too much. I remember a time when thought was synonymous with action, one just led to the other. But after years of ME/CFS, we have to learn to monitor every thought and think about whether it will hurt us to follow through with it. We must constantly self-monitor which is very difficult and unnatural.

We are fragmented souls, what was once a harmonious relationship between mind and body has been torn apart and we linger in limbo; Neither mind nor body able to move or act freely, both crippled by the loss of its companion self. This causes so much suffering.

Someday we will be cured and it will be the strangest experience to simply think and act. Our minds will be re-connected with our bodies and anything we think will simply be enacted by our bodies without any extra thought. This feeling will be so freeing and life will become so simple and easy and free. I can’t wait!



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