“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.

Unfortunately, it’s not a case of getting more sleep. I could have a lovely 12 hours of sleep at night and wake up feeling like I have been hit by a truck. Or I could be kept awake by pain or insomnia all night and function no differently the next day. Sometimes I wish I was simply tired.

2. What you see is not what it appears to be.

CFS is an invisible illness… looking good doesn’t equal feeling good. I often wish people would see past the well-presented, mostly articulate and smiling woman in front of them. Even close family and friends haven’t seen the full extent of impact that this disease has on my life, especially when my symptoms flare in full force. You won’t see me out of the house when this is the case.

If, however, I have enough energy to go out on a certain day, I will factor in the energy required for everything from dressing well to putting makeup on to cover the bags under my eyes.

What you won’t see is the five minutes I sat on the floor of the shower when standing in the heat got too much. The three times I had to lay down to rest before leaving the house. The pain throbbing through my body as I moved, and the headache pounding right behind my eyes as I tried to keep up with the conversation around me. You won’t see the rest of the afternoon I spent in bed after being out of the house for just an hour.

3. The battle takes place every day.