“Hey Mell, wow you look tired today, late night?”
“Burning both the candle at both ends are we now?”
“You look ill at the moment, everything okay?”
“You’re always tired”
“Yeah I feel tired too at the moment, don’t worry just get an early night and you’ll be fine tomorrow”.
This is almost hilarious to me now, I said almost.
Especially when people use the words ‘You’ll be fine tomorrow’. Oh yeah, because the term chronic doesn’t enter your mind for a reason?
I remember when I was first diagnosed over a year ago now with the chronic condition Myalgic Encephelomyelitis, or Chronic Fatigue Syndrome as it’s also known, I was in the midst of a huge flare and completely in the dark as to what was happening to me, no one knew exactly what was wrong and I had undergone so many blood tests, physical exams and specialist appointments to decipher my symptoms. Eventually it was labeled as M.E. / CFS and finally things began to make sense with everything I had been experiencing for so many years.
People began commenting on how tired I looked all the time, counteracting my statements of ‘how are you’, ‘oh yeah i’m just tired’, with ‘you’re always tired’. As soon as I was diagnosed, I knew there was a reason behind it, I wasn’t just weak, I wasn’t rubbish or slow or lazy. There was a genuine reason why I was exhausted, and it had a completely physical reason behind it. This was an IMMENSE relief to me, as you can imagine. But I still couldn’t shake the feelings when people would comment on how tired I looked, how ill I seemed, how rough I appeared. It made going out in public or going to work increasingly difficult; how do you explain to a total stranger that you are not in fact, just tired, that there is a reason you have messed up their order twice already, and have already forgotten how they take their tea or where they were sitting, even though they come in every day?
Do you tell them that you have just been diagnosed with a chronic condition that has no proof yet of being cured? That this is something I have lived with for years and will have to continue to live with possibly for the rest of my life? Or do you simply answer with something short, sweet and nothing short of a lie by just saying you had a bit of a bad sleep last night?
People don’t seem to want to hear the truth behind illness, it makes them uncomfortable, it makes them unsure of what to say or how to handle the situation further, it makes them feel awkward for causing a fuss. What makes it even worse though, is when you do decide to be brave and tell them what’s really going on, and they make comments like ‘oh but we all get tired’, ‘oh yeah but everyone struggles with the odd bad day’, ‘don’t worry you’ll get over it, you’ll be fine tomorrow’. It is literally like a punch in the stomach that makes you feel more nauseas than you already do. It’s like slicing your arm open and then pouring lemon juice and vinegar on top AND THEN rubbing salt into the wound. I do understand that people might just be trying to be nice, or sympathetic, but what they’re really doing is exposing your deepest insecurities and not taking your condition seriously. We already feel as though people don’t believe us, because one day we might be able to get up and do things seemingly like a normal person, but this is never without consequences; it is carefully planned and managed well enough so that you have rest breaks, take appropriate food with you, medications just in case, extra clothes to cope with your lack of temperature control, all of this simply to leave the house for an hour.
The truth is, people see me at my best, they see me when I have the energy to leave the house and put myself in a social situation. I will more than likely look tired even then, but I have a face full of make up to hide the bags and blemishes that reveal how sick I really am. So I can see why it is difficult to take my condition seriously, when the only time you actually see me is when I feel well enough to be out in the world.
But please, please think twice when you say things like ‘wow you look tired, late night was it?’, and think maybe there is actually a reason I look exhausted, maybe there is a deep sensitivity, insecurity and a self consciousness which comes along with a chronic condition that makes you look like shit constantly, and means you never have the energy to be your true, vibrant, colourful self.