The 4 Phases of Post-Diagnosis Healing
What child doesn’t dream of what they will be when they grow up? A doctor, writer, singer, footballer, astronaut – we dream of a magical future where we live extraordinary lives and accomplish extraordinary things.
I dreamt of being a famous writer, inspired by the works of J.K. Rowling and her ability to reach so far into her imagination that she created an entire world of its own that will probably live to see more generations than the creator herself.
These days, I don’t dream much anymore.
What happened after my narcolepsy diagnosis?
It took me a very long time to stop fighting my condition and learn to accept the hand I was dealt at the age of 15 (the age my symptoms emerged). Looking back on that day, the day that an apathetic doctor confirmed my suspicions – “Yes, you have narcolepsy with cataplexy,” she stated passively.
My reaction was probably the opposite of what one would expect when diagnosed with an incurable chronic illness; I was relieved and strangely excited! I was probably the only person who left that clinic with the biggest smile on their face after being told they tested positive for a life-long illness.
But how could I know what was to come? How my life would be forever transformed from the 6 short words that I took so lightly. In my eyes, I was leaving that doctor’s office with the cure in hand. I felt complete confidence that my problems were over!
My post-diagnosis reactions
Every shocking or traumatic experience in life is usually followed by a “healing process,” whether that be handling life after a break-up, losing someone close to you, or being diagnosed with a serious illness. My reactions to being diagnosed with narcolepsy pretty much fell within the same pattern.
Of course, it’s important to be aware that everyone deals with problems in entirely different ways, so I emphasize that this “healing process” reflects only my own.
The 4 phases of my healing process
What I describe as my “healing process” summarily occurred in 4 distinct phases.
Denial came immediately following my diagnosis as I had no perception of what living with narcolepsy would entail. This reflected my ignorance of its true implications.
Rage came 3 months later when I was startled at my desk by a loud shout emitted by my boss. I had fallen asleep. My boss could only look at me, exasperatedly stating that she thought I had been cured and looking at me as though I had lied to her. Instead of feeling angry at her, I was unbelievably angry at myself. I was not expecting it at all. Her feeling of betrayal did not come close to my own. I felt betrayed by my body, and I was furious.
Grief came quickly after. That same night I cried myself to sleep as I finally realised that my life was never going to be the same again, no matter what I did. I felt as though I was grieving the loss of myself, and there was absolutely no one I could talk to who would ever understand.
Acceptance, however, would not come so soon. The beginning of my journey to acceptance would only begin almost 2 years later. Personally, I do not believe that I will ever fully accept my reality. To me, acceptance is something that comes and goes, just like there will be good days and there will be bad days.
Everyone's experience looks different
These phases are different for everyone and no one should ever force themselves – or allow someone else – to hurry any one of them. Everything happens in its own time and this process should always be respected.
I try to always remember this quote by Jenni Young: “Every situation in life is temporary. So, when life is good, make sure you enjoy and receive it fully. And when life is not so good, remember that it will not last forever and better days are on the way.”
Do you feel that others judge the severity of your narcolepsy based on how you look?