The Great Beyond


By Whitney Dafoe.


Having Severe ME/CFS is so close to being dead. There’s really no other way to describe the experience I have had. I don’t think it’s something that people who haven’t had severe ME/CFS can likely understand. Looking back at who I was when I had mild and moderate ME/CFS I’m not sure it’s something that even patients who haven’t been in the extremely severe state can fully understand. I was literally barely alive and I am confident that in short time science will prove that severe ME/CFS patients are barely alive and that ME/CFS patients in general are less alive mentally and physically than healthy people.

I think the only time a healthy person maybe experiences anything like this is shortly before actually dying. But in that case the person is generally in this state for a much shorter period of time and so remains much more connected to who they were, and their former lives. This is the state in which healthy people let go of their former lives and accept death. Which is probably one of the reasons suicide is so common for ME/CFS patients.

When I was severely ill I lost so much of myself. I was holding onto fragmented memories left imprinted in my mind of who I was but that person in reality didn’t exist anymore. The thought patterns and emotions and world views that created the person I was no longer existed. Yet I was still technically alive just enough to be conscious and bear witness to this state of non existence.


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