Chronic Diva

To those of us with chronic illness or autoimmune disorders; to those of us with chronic pain, being tired has taken on a whole new level of meaning. It’s something that without meaning to, becomes this group of exclusivities, where you find yourself saying things like, “You don’t know unless you’re experiencing it.” Which, sad to say, is true. And in one fell swoop, gives you all the perspective you will ever need because you suddenly have this point of view of what it was like before you were sick and after. My life has suddenly taken on a B.R.A. [Before Rheumatoid Arthritis] and A.R.A. [After Rheumatoid Arthritis] among other fun comorbidities, like I’m some epoch of history. 

But how do you explain to someone who is healthy how you experience fatigue? Especially when people use it so commonplace and not necessarily wrong? Fatigue like pain can be relative and what they are experiencing is relative to what they have experienced up to that point. They don’t have a wider point of reference like you do now, and that doesn’t make them wrong. It just means that you have to paint the picture better. So how do we do that? It can be extremely frustrating for the masses of us out there who are trying to explain to friends, family, bosses, or anyone else what we experience when we tell them how tired we are and their response is, “Oh yeah, I know. I only got four hours of sleep last night.” It’s one of those moments where you want to face-palm because you get it- you feel sympathy, but you also know its way beyond 4-hours sleep.

Fatigue is like treading through a vat of Jell-O for hours with no sleep, after running a marathon and lifting weights while you are feverish, have flu-like symptoms, are suffering from a migraine and have swollen, aching, joints. It’s all of this compounded with needing to keep up with your work and home-related activities and anything else that is expected of you, while you feel like your body is leaden from exhaustion and you wonder how you are going to type the next sentence on the computer, because your eyes want to close and your fingers don’t want to work. It’s always pushing yourself about 150% just to make it to about 30% of functioning. And no one understands it. Not unless you are living it and going through it and trying to figure out how you are going to manage from the day. I could try to explain it to you and every other chronically ill person who deals with it could try and explain it to you and still, you’d only be able to grasp the tip of it. A theoretical understanding of how it is to live with chronic fatigue, because until you are in it, experiencing it, unable to call in sick afraid you might lose your job, having to take care of sick kids and a family despite not being near 100% yourself and struggling everyday- you’ll never get it. Not ever.

But does not understanding it means that no compassion can be extended to those suffering from chronic fatigue? Does it mean that those on the other side of this, must continue to look at us with scepticism? I would hope not. I have never adhered to the philosophy that you have to experience something in order to offer some kind of empathy. I understand I might not ever understand it in the way the individual experiencing it will, but I can try to understand what they are going through and I can try to ease their suffering and perhaps educate others. People should not have to needlessly suffer at the hands of ignorance, and this is why I do what I do. So, if you know someone who says they experience chronic fatigue, or you experience it and have someone who doesn’t understand it, maybe reading this will help them a little.