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another symptom of chronic illness

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Bravery: the quality or state of having or showing mental or moral strength to face danger, fear or difficulty.  The quality or state of being brave

It is not uncommon for others to remark on my bravery in the face of FND.  And in defiance of the many symptoms that accompany life with a neurological disorder.

Those closest to me throw words like brave, resilient and strong to describe me.

For me, however, it comes as a shock.

I look in the mirror and am unable to find bravery, or strength in the reflection staring back at me.  A reflection whereby I am only able to recognise fear and anxiety etched beneath the surface of my face.  I ask myself, can it be true?  Could I be brave, despite not feeling it or failing to recognise it in my reflection?

Reminiscing on my last few blog posts and retrospecting on the difficulties I’ve faced has only made me question other people’s perception of my apparent bravery. During a flare, I feel anything but brave or strong.  My sole purpose was to survive the day amidst the debilitating symptoms. Why is it that others see courage and strength within me, while I am unable to see it in myself?

"During a flare, I feel anything but brave or strong. Why is it that others see courage and strength within me, while I am unable to see it in myself?" Share on X
We are all told that strength and bravery are essential traits – but what does it mean to be brave? How does it look to be brave? Photo by Heather Schwartz on Unsplash

I came to realise that I have yet to recognise bravery within myself because I regularly feel an overriding sense of fear and anxiety.  So intense that it seemingly obliterates the ability to identify with the concept of courage or resilience.  Fear and anxiety, however, feel all too familiar, a supposedly permanent byproduct to life with a neurological disorder.  Another symptom that we have to learn to grapple with alongside numerous others.

"Fear and anxiety, feel all too familiar, a supposedly permanent byproduct to life with illness. Another symptom that we have to learn to grapple with alongside numerous others." Share on X
Anxiety another symptom of life with a chronic illness
Anxiety is often an additional and unwelcome symptom of life with a chronic illness

I have had to become familiar with all kinds of fear and worries while living with a neurological disorder.

Fear and Anxieties That Accompany Chronic Illness

"I fear the disorder and its unpredictability, always on edge, waiting with bated breath for symptoms to present themselves again." Share on X

One such example is the fear of the disorder and the way it takes over my entire life.  I fear the unpredictability of the symptoms; always on edge, waiting with bated breath for symptoms to present themselves again.  There are days when I feel relatively well, days where my mobility is OK and getting around is somewhat easy.  Other days, however, I am debilitated by pain and other symptoms associated with FND.

Hindered further by fear and anxieties; fear of the impermanence that illness has on every facet of my life.  Fear of the permanence of the condition and the huge question mark it leaves in its wake.  Fearsome and anxious thoughts wrangle for attention, shining a flashlight on everything that I cannot control.

"Fear and anxious thoughts fight for attention, shining a flashlight on everything I can't control." Share on X

When symptoms do begin their torment of my body and life, so begins a fear of what it means.  There is a worry whether these symptoms are the beginning of a severe flare.  Or worse, the start of a deterioration in the disorder with which we live.  We fear how long these symptoms will last and what our future will look like if they continue.  There is fear over potential treatments that we may need as a result, which causes further anxieties such as possible side effects. 

Many fears and anxieties accompany life with a neurological disorder.
Photo by Katii Bishop from Pexels

All of these are fears of the unknown. The many question marks that exist when diagnosed with a chronic illness.  And as these fears and anxieties intensify, so does the tight knot in my stomach, making me feel nauseous.  These intense waves of fear and anxiety only cause further exacerbations with the ongoing symptoms.  And as the symptoms intensify, so does the stress, creating a never-ending cycle, one which is difficult to break.

"There is a fear of the unknown when living with chronic illness." Share on X

The Lies They Tell

There are numerous scenarios where these anxieties can take hold, affecting my ability to function outside my limited comfort zone.  Many situations that trigger fear and anxiety, symptoms holding me hostage as worries over becoming severely unwell, or suffering a fall become prominent in my mind.  Even in places which are deeply familiar, where the layouts of shops or certain facilities are ingrained in my memory also becoming fearful due to the unknown of what is going to happen, catastrophising to the worse case scenarios.  Going to new and unfamiliar places, however, can invoke even worse anxiety due to all of the unknowns, and not knowing what to do or the best place to go if the worst happens.  As a result, we tend to confine ourselves inside of our comfort zones, limiting ourselves and markedly shrinking our world.

Homes can become like a security blanket
Our homes and places which are deeply familiar to us can become like a security blanket; somewhere where we feel safe despite the symptoms that are tormenting us.

The fears and anxieties tell us that we are not strong enough and that we are unable to cope with whatever our illness throws at us.  Our minds lead us to believe that these fears and anxieties are more significant than they are.

"Our fears lie to us, making us believe that we are not strong or brave in the face of illness." Share on X

However, they lie.

Our minds make us think that we are to blame for our illness, to make us feel shame towards ourselves for being weak.  I can understand now that this is wrong; illness is something that happens to us, not because of something we’ve done or an inherent character flaw.

"Illness is something that happens to us, not because of an inherent character flaw." Share on X

Anxiety as a Familiar Companion

Fear and anxiety have both been a long companion of mine, has become much a symptom of Functional Neurological Disorder (FND) as pain or trembling in the legs.  They feel familiar and have needed help to try and overcome its effect on my life, especially the impact they have on my experience with a chronic illness.  Many courses, such as one in Acceptance and Commitment Therapy (ACT) have taught me to change how I react to fear and anxiety.  Lessons on how to explore these deep-seated fears and what I can learn from them.

"Fear and anxiety I have become much a symptom of illness, as much as pain or dizziness." Share on X

It is essential to acknowledge the fear and anxiety and to become intimate with them.  By doing so, I can now recognise the physical manifestation, the thoughts that accompany them and finally how I respond. Through mindfulness, I have been able to learn so much about my fears and anxieties, and more importantly the knowledge that I do not have to relinquish all control over to them.  It reminded me of a famous quote by Mark Twain; “Courage is resistance to fear, mastery of fear, not absence of fear.”

Courage is resistance to fear, mastery of fear, not absence of fear

We are all prone to fear and anxiety in our lives, but what make us brave is feeling those feelings and moving forward regardless.  Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us.

"Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us." Share on X

This week, my Mum and I headed to London to visit the Harry Potter Studio Tour.  As a big fan of both the books and subsequent films, it has been somewhere I have wanted to visit for some time.  However, recently, a lot of my symptoms have worsened, experiencing what has been a severe flare.  And as the trip came closer, anxious thoughts began racing through my mind.  My mind began to deceive me into believing that I was not strong enough to be able to cope with the impending trip.  My mind led me to think that my symptoms and illness is stronger than me.  It even tried to convince me; it would be better if I would cancel the trip and not go.

"My mind often leads to believe that my symptoms and illness are stronger than me." Share on X

However, I refused to give in and yield to the demands of either the symptoms I live with or the ensuing anxiety, figuratively sticking two fingers at the intrusive thoughts entering my conscious thoughts.  I went regardless and yes, at times during the tour, it proved difficult because of pain, trembling and vertigo.  But I did it and enjoyed myself regardless.  There have been many instances where I have not been able to go to certain places or do something due to the severity of the symptoms.  Have I ever given up?  No, I may not go on that day but I dust myself off from the disappointment and my recriminations, and I try again tomorrow (or when the symptoms are less severe).

Courage doesn't always roar..I will try again tomorrow

So perhaps, I am braver than I believe myself to be and validation to myself that I am stronger than my illness.

"We are braver than we lead ourselves to be and are stronger than our conditions." Share on X
A Dose of Anxiety: An Extra Ingredient In The Recipe For Chronic Illness
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