The struggles of an invisible illness
Source: Tim Gouw
‘Chronic fatigue syndrome’
Focus on those 3 words. What do you perceive chronic fatigue syndrome (aka CFS or M.E.) to be?
I’m guessing, just like the majority of people, you’re going to assume that someone who has CFS is consistently tired and just needs to hit the hay earlier? I’m guessing you’re going to assume that CFS is a pathetic excuse of an illness. For lethargic people to utilise? However, what you don’t know is that CFS is an invisible disability. Regardless of the pain, aches, exhaustion and occasional memory loss; unless you are diagnosed or experience this disease first-hand, you’ll never even come close to understanding the terms of this debilitating illness, because it’s practically invisible.
A couple years ago I was convinced I was dying. I had no idea how or why. But I had this gut instinct flashing warning lights in my mind. I felt trapped; I appeared perfectly healthy, how could anyone possibly believe my claims to feeling so broken? I could feel my body slowly wearing away. I could feel the life in me slowly being ripped out. I was 18 years old, internally feeling aged 90.
Studying for A-levels in college during this time felt virtually impossible. The brain fog and short-term memory loss would often leave me confused and frustrated with my incapability to digest and memorise information. I recall finding my psychology classes extremely tough. Constantly being victimised for falling below my predicted grades, I was shamefully moved to the front of the class for the ‘benefit’ of my learning. But little did my teacher know I was fighting a disease, and little did I know either.
Every day, after college I would drag myself straight to bed, sleeping through until the next morning. I had little time to revise because I was just about able to keep myself awake and carry myself around throughout the day.
I was a teen feeling completely drained and defeated, completely unaware of what was happening to me. I would go about my days feeling beyond fatigued, bones weighing me down and constantly on the verge of tears due to my eyes struggling to stay open. I didn’t want to be the person always complaining about being tired because usually the responses I’d receive were along the lines of ‘I’m tired too’… no one would quite understand. I appeared perfectly normal on a daily basis, despite silently suffering on the inside and at home.
Unlike the regular human, the curse of CFS is that no amount of sleep will ever refresh you or make you feel ‘better’. There is not yet an actual cure other than time.
Being so young, the hardest thing I’ve ever had to do was to learn to slow down and know that I couldn’t do everything I want to do. During my worst phases I would isolate myself from everyone, mentally I was too exhausted to communicate, even texting was often too much for my frail self to handle – I just needed to lay and simply do nothing. Absolutely nothing.
Chronic Fatigue Syndrome affects thousands of people worldwide. Each sufferer experiences this disease to different intensity levels, and in various ways. The physical symptoms of CFS can be as disabling as multiple sclerosis and extreme cases require full time carers.
After years of battling an invisible illness, time really has been the biggest healer. My development has exceeded my expectations, and finally for the first time ever I’m confident that one day in the near future I will feel completely free. I’ve shared with you, a tiny fraction of my story to raise awareness and provide hope to other sufferers out there.
Never question or challenge someone with an invisible illness, I wouldn’t wish it upon a single soul.
By Hannah Goulding