On reflection, I’ve come to realise how much I’m always fighting. And no, I’m not fighting in a war. But I am fighting for my life; fighting for some semblance of normality. 

A warrior. A person described as an experienced and skilled fighter.

Warrior, a short word that divides many within the chronic illness community. One which many resonate with, the recognition of the constant fight and struggle of living endless symptoms of a never-ending illness.  For others, they try and distance themselves from the phrase, one which does not resonate with them as the disease has become a part of them, and to fight it, would be to battle themselves. 

In the post ‘Embracing The Warrior Inside’, I discussed the term ‘warrior’ and how I began to resonate with it, in my own life of living with a neurological disorder. It became a word I related to, as I came to realise the fight I conquer every day. And despite the insurmountable odds that the disabling symptoms put in my way.

It can be easy to feel like a #warrior during moments of stability and relative wellness. But when we are flaring and feeling worse than ever, as I am finding out, then we feel anything but a warrior. We can feel weak, useless and a burden #spoonie #chronicillness #chroniclife https://t.co/6ljRHMQ2sN

— Rhiann Johns (@serenebutterfly) February 18, 2020

However, I have come to appreciate that it can be easy to feel like a warrior when we are experiencing moments of stability and relative wellness. Of course, the symptoms of chronic illness never disappears, but when they aren’t as disabling and feel like we can conquer anything despite them, we can feel like a warrior.  We can feel like a victor. 

"It can be easy to feel like a warrior when we are experiencing moments of stability and relative wellness. We can feel like we can conquer anything despite chronic illness; we can feel like a warrior.  We can feel like a victor." Click To Tweet

But even when our physical health is at it’s worse, if our emotional health remains unscathed, the warrior mentality remains intact. Even during these hard times, there is still a piece of mind that this too shall pass. A place in which self-blame and judgement do not exist, despite the tenacious essence of such symptoms.

Those Times When The Warrior Title Doesn’t Fit

But what about those times when we are amid a severe and debilitating flare? The times when everything feels like an impossible struggle; or those times when despair and hopelessness accompany the persistent and disabling symptoms? And the times in which our customary emotional resilience for coping with the demands of chronic illness has seemingly disappeared?

Well, inevitably these are the times when the ‘warrior’ hat we usually don, no longer fits. This hat no longer fits when the constant struggle of living with a chronic illness becomes too much to bear. The times when the symptoms become exceptionally crippling that, we can scarcely cope; drowning in the pain and misery that such symptoms cause. And finding ourselves unable to keep our heads above the water as the storms persist. 

"The warrior hat no longer fits when the constant struggle of living with a chronic illness becomes too much to bear. The times when the symptoms become exceptionally crippling that, we can scarcely cope." Click To Tweet

A surge of grief begins to dominate our very existence as the losses increase as a consequence of the continued damage to our functionality. The “I can’t” that we once denied slowly becomes our truth, as everything, even living, becomes a challenging battle.  The inability to do those things that once came so naturally takes up so much room in our minds, that it can feel like we are less than or have very little to offer to the world.

"The "I can't" that we once denied slowly becomes our truth, as everything, even living, becomes a challenging battle." Click To Tweet

And So No, We No Longer Feel Like a Warrior

And so, we no longer feel like a warrior. The feelings that conjure when being a warrior such as bravery and positivity is replaced with feelings of weakness, being useless and a burden to others. When amid a severe and debilitating flare, the warrior inside of us has disappeared, we are unable to fight. And as we are unable to resist, we can only lie and endure the pain and agony of such a flare. And our days become consumed by the disruption, and our lives become preoccupied with existing rather than living. 

"When amid a severe and debilitating flare, the warrior inside of us has disappeared, we are unable to fight. And as we are unable to resist, we can only lie and endure the pain and agony of such a flare." Click To Tweet

But still, we paint a smile and pretend that we are okay. And yet, we don the hat of a warrior, despite that it no longer fits. Often, there is an added pressure from outside forces such as the media, that being a warrior, and fighting the illness as if it’s a mortal enemy is the only acceptable way to be ill.  And the only sufficient way to cope with living with a chronic disease. 

"Often, there is an added pressure from outside forces such as the media, that being a warrior, and fighting the illness as if it's a mortal enemy is the only acceptable way to be ill." Click To Tweet

The Metaphors Used To Describe Illness

In the media, there is a saturation of the use of metaphors such as ‘warrior’, ‘fight’, ‘war’ and ‘battle’ when describing life with chronic conditions, and those living with them. And yes, sometimes, they can be powerful.

But, often the use of such descriptions can add a lot of pressure for those living with a chronic illness. And when amid an extremely severe and debilitating flare; unable to fight, or enter into a war or battle, there is the suggestion that we have somehow lost, or failed.  That if we’d just ‘fought’ harder, we would be better or at least be able to cope with the current flare. Furthermore, there is an implication that the blame lies solely at the feet of the sick person.

"When amid an extremely severe and debilitating flare; unable to fight, there is the suggestion that we have somehow lost, or failed. There is an implication that the blame lies solely at the feet of the sick person." Click To Tweet

For those of us living with such afflictions, the use of such metaphors can make us feel weak and powerless. Particularly so, when in the middle of a powerful and relentless flare that we cannot fight or shake off. The hatred and animosity for our sick and frail bodies deepen as it becomes an enemy that must be defeated. And setting us up for a life-long battle against ourselves; one in which it is impossible as the life-long condition is just as much of a part of ourselves as anything else.

I Don’t Feel Like A Warrior

At this moment in time, no, I don’t feel like a warrior. I am struggling; barely surviving and just existing. The flare in the symptoms which accompany FND are at their worst, and in all honesty, I have never felt so bad. Words that I am sure I have used repeatedly during my journey of living with a chronic illness.  But still, words, that at this moment in time are one hundred per cent accurate.

"At this moment in time, no, I don't feel like a warrior. I am struggling; barely surviving and just existing." Click To Tweet

I have spent so much time recently in floods of tears as a result of the excruciating pain sweeping throughout my body. The trembling in the legs, dizziness and vertigo becoming more frequent and intense that there is nowhere I feel safe. And as there is nowhere, I feel safe and secure from the symptoms that are making my life hell, the anxiety that is often much a part of living with chronic illness than the forementioned symptoms has also started wreaking havoc.

The symptoms have become out of control, and its strength unconquerable. And as such, I am unable to fight or go into battle against these unforgiving forces. I am only able to endure the agonising pain and the unrelenting assault of the other symptoms that accompanies FND.

So, no, I am not a warrior. I am just a woman living with a life-long neurological condition trying to get through each day. Days where I can dodge the boulders that FND continually throws at me. And other days where I am getting crushed by them.

"So, no, I am not a warrior. I am just a woman living with a life-long neurological condition trying to get through each day." Click To Tweet