LIVING WITH IDIOPATHIC HYPERSOMNIA
Idiopathic Hypersomnia (IH) is not an illness that is commonly referenced in everyday conversation. IH is a rare condition that every patient experiences differently – however, we all face shared challenges that connect us and create unity between those who are diagnosed.
I have been a heavy sleeper throughout my entire life. My childhood was clouded with naps on the drive home, drowsiness during my favourite films and low energy levels compared to my peers. My early memories include my mum fawning over how easily I drifted to sleep as an infant and being awarded as the biggest ‘bed head’ at a birthday sleepover.
As I grew older, I would doze off in the classroom, rest my eyes during lunchtime and fall asleep on the long bus ride home, regardless of the commotion that surrounded me or how many hours I had slept the night before. I knew that I was excessively tired, but I did not realise how uncommon my level of exhaustion was amongst the wider population. After suffering with anxiety and depression throughout my teenage years, I simply thought that I was exhausted by the mental strain of sorrow.
At eighteen years old, I started my first full-time job and, oh my, I struggled to cope. I would cry myself to sleep each night, overwhelmed with high levels of worry and immense feelings of dread knowing that I would always struggle to rise and get to work on time. I wanted so desperately to be a ‘morning person’, and I couldn’t understand how waking up and completing a full day of work could be so draining and physically demanding. When comparing myself to other people, I experienced feelings of shame and extreme vulnerability. Each day I would wonder, “Is it always going to be this hard to function?”.
At age twenty, after taking on board the concerns expressed by my loved ones, I decided to seek medical support for my ongoing fight with fatigue. After two sleep studies and ruling out every other possible cause of excessive daytime drowsiness despite my long deep sleep, I was diagnosed with Idiopathic Hypersomnia. I began treatment for an incurable condition that would, according to medical professionals, worsen over the course of my life. Initially, I felt relieved that I had an explanation for my life-long struggle. Sometimes being assigned a label is comforting, and enables you to soldier on despite the fact that you wish you had been dealt different cards.
Living with IH is tough, to say the very least. You are faced with a tidal wave of uncertainty and feelings of apprehension. You feel strength and weakness simultaneously, while you fight an uphill battle. Your existence can seem like a constant tug-of-war between your intentions to remain awake and the harsh reality of your illness. Quality of sleep plays a vital role in every person’s life, and to live without refreshment and rejuvenation despite having good quality sleep can be soul crushing. It can also be empowering to acknowledge your struggle and give yourself a pat on the back for the small wins that make you feel like you are brave. Leaning on prescribed stimulants and fighting a constant war against your drowsiness is debilitating, but you do feel a sense of pride for making it through the day.
Each day I live with an inner monologue that jumps between the urge to share my experience or remaining silent. This is a dilemma that every person with a chronic illness faces. Do we expose ourselves, our vulnerability, our invisible ailment to others who may not understand? Do we accept that people may react in disappointing ways? I can’t recall the number of times someone has responded to my confession with, “Well, we all get tired sometimes”. They’re right, of course. We all get tired. However, I can’t identify anybody else in my circle who faces the same impairment. Not quite.
With Idiopathic Hypersomnia Awareness Week on the horizon, I felt as though it was important to share my experience and publicly acknowledge that I face complications that hinder my life in more ways than one. I am writing this to emphasise that there is no shame in admitting that you have a condition and that you are proud to rebel against any negativity that casts a shadow over your life. People with IH are doing their best, and that’s certainly something to recognise and applaud.
I am not religious; however, when I feel confronted by an uncertain future that will be inevitably influenced by Idiopathic Hypersomnia, the Serenity Prayer by Reinhold Niebuhr comes to mind.
God, grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.