The hidden side of me

IT just creeped up on me. Just like a stalker. But IT is actually a monster. A horrible painful one. Being followed around is not pleasant. I thought there were laws against that but no one seemed to notice, nor care. First IT was annoying, like a thorn you could not shrug off. Then the monster just grew and grew that it totally blocked my focus. I couldn’t concentrate much. I started not sleeping very well. I was bewildered how IT was becoming so much part of my life. I became more concerned that I seemed the only one concerned to be aware of IT.

Then one day, the worst nightmare occurred! I suddenly realised that IT was no longer around me. No, not for one second will you feel relieved for me, that you might think I had finally escaped from IT. No, far worse imaginable!! IT was inside me. Yes, how it happened, I have no idea but I was aware IT was part of my Being, inside my body. Like there was some hidden invitation to inhabit every part of my anatomy. My skin lit up on fire with burning pain and there were several sensitive areas that could not be touched without making me want to scream. Most days, getting out of bed was an ordeal, but lying in bed was not fun either. Nothing could console me. Especially if I had to face the day without energy after not having rested at all. I also feared that my brain fog would put me in a shameful situation with the world, and I would let myself down in some ridiculous way.

Trying to ignore what was happening to me became impossible. And totally unexplainable. Was I totally consumed and obsessed about IT, since I still looked the same to everyone else? I am sure they noticed that I was more irritable, short tempered, needing to sit down more, with less energy, but was no one really interested that I was not quite myself anymore. I knew I wasn’t, no matter how hard I tried to resume normality. And how could I articulate this to anyone? There was not much visible evidence really. People would look at me as if I needed attention that was not justified! Like I was a spoilt brat on the verge of a tantrum!

At that point I felt I had to resign to IT and declare I had lost the war. Many times, I would just want to crawl inside my snail shell to be alone, only to discover that IT inhabited my private space also. Where could I escape to without being invaded by this uninvited squatter? Yes, from a stalker to a squatter, since IT inhabited my sacred temple now!

So, at some point, I gave in. I retreated into the background, isolated myself. My self-esteem felt shattered into facing a future of torment. I wondered how I could survive tomorrow, let alone the future. Every time I had a painful flare-up, spreading from my toes right up to the roots of every single hair on my head, I dipped lower into my doom. It’s like when you are struggling to survive in the privacy of your room, and then you feel enormous resentment at hearing the church bells ringing out joyously, totally oblivious that you cannot celebrate too! Could IT go and live there, in the belfry, and leave me free?

Being intimate or getting close to anyone, was difficult, almost dangerous at times. Can you imagine feeling like you are an air balloon and everyone around was a threatening pin, ready to burst you into oblivion!? How I wished and yearned to live inside a normal receiving and accepting body of receptivity!

Can you imagine living behind a false smile, hating your own fakeness, when people greet you with “how well you look”, which would be a well-intention

comment, of course!? Even my dear family would look at me bewildered and full of expectations, feeling abandoned without a plausible explanation. I am made up of two worlds; one in which I exist to hold everyone together, and the fast forward to 20 years later. Yes, it is survivable, fortunately, or unfortunately. Along the way IT invited more relatives to join and inhabit my body, so I became even more invaded. Maybe it’s now time to name IT, so as to concretise what I have been sharing about my internal experience. More people have heard about IT, this monster, this painful fatigue syndrome, and IT is being more acknowledged as real, and not “it’s all in your mind”, as previously accused.

Most doctors now accept that ME (myalgic encephalomyelitis) is a genuine and disabling illness. The World Health Organisation (2016) classifies ME as a disease of the central nervous system that is neurological. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities and chronic mononucleosis. Now, when visiting a doctor, they no longer look at you as if you have gone gaga. Speaking about the latter, Lady Gaga, the singer says, “it feels like there is a rope pulling from my first toe, up all my leg, around my first rib, then to my shoulder and then my neck, and head, jaw. Even the face hurts”. She also has this chronic disease that causes pain in joints, muscles, tendons and other tissues. The condition is triggered by changes in the central nervous system and is aggravated by emotional factors. Anxiety, panic syndrome and depression are also triggers. Lady Gaga adds that “she gets so irritated with people who won’t believe it is real. Chronic pain is no joke“.

As I mentioned, many years have lapsed living with my condition. When people say, “You look OK“, I no longer feel insulted, because now I know I am a survivor. It actually means that, in spite of my hidden ailments, what didn’t kill me, (no, didn’t make me stronger, like the song says), I am proud to have adjusted to it. Along my journey, I stopped looking at this hidden part of me as an enemy. I learnt to befriend my invisible painful illness. It transformed from stalker, to squatter, to saviour, since it made me more humble and empathic with humanity. We secretly play Russian Roulette together, IT and I. Sometimes I succumb and stay in bed when my body asks me to. Sometimes, with much effort, I send my condition to bed and I go out without IT, looking like a million dollars. I don’t need anyone to believe me. I believe me, and ME. Please do too.

Angele Licari is a Gestalt Psychotherapist and draws on her experience of working in the counselling field for the past 36 years. She has a background of training in the psychodynamic tradition. She works with individuals, couples and groups and has been involved as a tutor and supervisor to trainee counsellors. She supported groups of staff, counsellors, drug-rehabilitation residents and prisoners, within two agencies/institutions besides counselling at the University of Malta. She was a member of the Prisoner’s Visitors Board for three years. Angele has her own private practice. She graduated a Master’s Degree in Gestalt Psychotherapy at the Gestalt Centre London with Metropolitan University London and attends on-going supervision as a means of maintaining, deepening and expanding her skills. Angele has a special interest in the interface between psychotherapy and spirituality; in practising within the framework of Hellinger’s systemic psychotherapy; and exploring self-awareness.