“You can’t survive chronic fatigue syndrome alone. It’s lonely, it’s isolating and it’s a battle each and every day.”
Each and every day, I’m fighting to challenge the perceptions surrounding chronic fatigue syndrome (CFS), whether it’s with well-intentioned family or friends, sceptical medical professionals or random acquaintances who want to sell me the “special” supplement that healed their great aunt.
Walking through life with this disease has been both a battle and a blessing for me over the past three years. It has turned my life completely upside down. It has impacted my health, fitness, social life, finances, living situation, independence and career. There have been plenty of hard days, but surprisingly, many moments of joy, too. However, one challenge I end up facing time and time again is not from the disease itself, but from those around me and their understanding of this disease.
So here are the five things I wish people understood about my life with chronic fatigue syndrome:
1. It’s not about being tired.
Yes, I’m tired. However, someone with CFS can be so fatigued it can feel like you have run a marathon with the flu. And that’s on a good day. It’s a type of tiredness that is beyond what you could start to articulate. This complex disease can affect all parts of your life and many bodily systems. From the cognitive brain fog that clouds your thinking, the nausea that doubles you over day in and day out, joint and muscle pain that throbs and burns leaving you unable to move, the constant flu-like state, the dizziness when you try to stand and the respiratory distress from when your body is so exhausted that the simple task of breathing has become a laboured affair.