The Phantom- Diagnosis of an invisible disability

Image description: The iconic phantom of the opera mask, which is a white mask which covers half a face, against a dark red background of satin looking material. A rose stem with leaves is placed horizontally across the base of the mask. 

At first you made me believe I was unstable. Like a heroine in a Gothic novel, I heard your whispers, felt your presence, saw your reflection in the mirror. I couldn’t prove your existence so, like many others, I came to believe you must live in my imagination. Not in the attic, the basement or the abandoned room. Not in my cells or genes or spine or nervous system. You made me wonder if I was lazy, ‘mad’, haunted…

I looked for you when your persistent spectre caused me to stop being able to work. I looked for you in blood tests, scans, consultants offices. You hide so well, I only found my own sense of failure and fear.

My doubts were reflected in the confusion of friends, even Drs. Kind but thinly veiled hints, ‘anxiety, ‘stress’ ‘non- organic roots’. What they meant was ‘psychosomatic’.

You made me doubt myself so much I tried to take my own life. You made me doubt myself so much that when someone else finally saw you, I didn’t believe them.

When my flatmates computer became infected by a virus, a difficult one that acted a bit like you- hiding in hard-to-find places, manifesting everywhere but leaving little evidence, I joked that 30 years ago we would have both been experiencing poltergeist activity. You see, I thought that if I could be so deluded, so could anyone else.

Sighting after sighting, I knew how you looked and felt and acted. Still I didn’t believe in you.

Books, it turned out, came to reveal you. Facts. Figures. Research papers. You see, lots of people have seen you after all. You are not so good at hiding as I had believed. You had been there on my medical records for months. Fibromyalgia. The trauma of how long you took to capture, failing to believe in myself, had taken its toll by the time the consultant rheumatologist diagnosed me. The world had become distorted by the cat-and-mouse games you played with my body, my mind, my senses and cognition and emotions.

Still an enigma, it is true I cannot show you on a blood test result, your shape is not outlined on a brain scan. That is not what you are made of. You are in the patterns of my body. In the pain and exhaustion. You reveal yourself in tender spots and trigger points. Endless headaches. Broken crockery. Legs that give way. Words that elude me. Sleep that never refreshes.

You are not such a mystery. You have been studied by people far better versed in the workings of the body and mind than myself. You have been experienced by millions. You are not so elusive. I see you. I know you. You are not a phantom.


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