author / blogger


Can't Fight This Feeling

I don't like fighting. I’m not good at it.

Physical fighting; nope. Never tried it, no thank you. Unless you count fighting with my baby brother, then yes, I was all in, right up until he won, and I’d revert to mild psychological torment or simply yelling "MUUUUUUMMMMM!!!!!!".

Verbal sparring, I'm not good at either. I get too emotional and defensive. I burst into tears then lose my thread of thought and wave goodbye to any coherent point. So, as I said, fighting isn't my strong suit.

Why then, am I expected to 'fight' my chronic illness?

I don’t know about you, but when I think of fighting, I picture musclebound tough guys oiled up to within an inch of their lives, probably wearing big boxing gloves and maybe tiny velour shorts barely concealing massive thighs and I'm sorry what were we talking about?

Ah yes. Fighting.

I picture Sly Stallone running up steps or punching carcasses: I certainly don't picture myself, diving out of bed ready to face the day with aplomb. Ramming a ‘health bar’ into my face hole then jogging all the way to work, stopping only to drop and give myself 20 every few yards, before stepping onto the treadmill I have built into my desk and punching absolute f**k out of my workload. I mainly don't picture any of that because it's ludicrous and beyond the realms of possibility. I MEAN have you eaten one of those health bars? I'm not big bird, let's lessen that seed content amirite?! Also, I health bars aside, I generally have the energy levels of marathon runner at the finish line upon waking/always.

Being told to “keep fighting!” or being referred to as a “fighter” or a “warrior” always tends to grate with me. I know when these phrases are used they are (generally) meant as a form of encouragement and perhaps even complementary. But to many patients with chronic or incurable illness it just comes across as irritating and at times even insulting.

For starters, what else would you suggest we do to ‘fight’ our illness? What nuggets of black-belt based wisdom do you have to offer that we (and countless medical professionals) haven’t already thought of or tried?

To put things in perspective, personally I have been ‘fighting’ for almost a decade now. Funnily enough, due to the incurable element of it, I haven’t beaten it yet. Since my diagnosis, I have had no choice but to ‘fight’. I have gone through seemingly endless procedures, surgeries, medications, trials and hospital stays, spent nights chained to the toilet or writhing in agony, and essentially this all leads to the repeated and often overwhelming feeling that I just cant do any more of it.

But as I said, I have no choice. Lying down and taking all this simply isn’t an option.

My other gripe with this phrase is the implication that those who’s symptoms have worsened, or worse, those who have passed away from their illness, simply didn’t ‘fight’ hard enough. Incurable illness is just that; no amount of fighting it will suddenly change that fact. The idea that those who have died from their condition simply didn’t try hard enough makes me sick to the very depths of my stomach.  

Like any defunct piece of kit, my useless carcass must be maintained, tinkered with and maybe even rearranged to keep it running. I must do what I’m told and trust in the expertise of those caring for me to live my life as fully as I can. I don’t consider any of this to be ‘fighting’; simply doing what I must in order to exist.  

With an invisible illness, we are often taken at face value; therefore, if we look ‘well’ we must be better. For most of us, this is a skilled façade, there is no ‘better’. We may appear well to outsiders, but underneath we are still struggling, albeit in private. Because you can’t see us ‘fighting’ and punching meat carcasses in a massive fridge doesn’t mean we aren’t. Our ‘fight’ is constant. There is no winner, nothing to beat. No reward. We sometimes get angry with our lot, angry with the world, angry with you. Our audible acknowledgement that life can be cruel and unfair doesn’t mean we have given up.

So, when we take moments to wallow and admit we are struggling, please do not confuse that with us seeking encouragement to get back in the ring.

I for one cannot pull off a leotard.

Kathleen NichollsComment