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neurological disorder

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There are insurmountable challenges when living with chronic illness. The constant, excruciating pain. The neverending fatigue that even the longest night’s sleep refuses to fix. The endless anxiety of never knowing when symptoms will strike next, leaving you incapable of doing well, anything. But one challenge is often overlooked. And that challenge is the ability to love yourself. No, loving yourself isn’t easy when chronically ill.

"The constant, excruciating pain. The neverending fatigue that even the longest night's sleep refuses to fix. The endless anxiety of never knowing when symptoms will strike. No, loving yourself isn't easy when chronically ill." Share on X
When we are diagnosed with a chronic illness, we wish we could break up with our bodies that insist on tormenting us with such debilitating symptoms – photo by Gabby K from Pexels.

It is easy to love yourself when things are going well, and the road ahead lies ample opportunities. The future looks bright and promising, and one which you cannot wait to explore. But all these carefully mapped-out-plans suddenly become rewritten by our bodies. The body that we thought we knew implicitly suddenly becomes something we no longer recognise. Our body is no longer a source of comfort and familiarity, but instead is now a strange, unfamiliar vessel that we loathe. It becomes a prison, holding us captive. A sentence which we are unable to escape, and which we must endure.

It may have been easy to love ourselves before the invasion of chronic illness, but it becomes increasingly difficult with it now a permanent part of our everyday life.

Why Is It Hard to Love Yourself When Living With a Chronic Illness?

It is hard to love a body when you can no longer recognise it as your own. After illness comes into your life, your body no longer feels like it once did. Nor does it work like it once did. The body once a friend now an enemy intent on making your life a misery. How can we love a body that is continually tormenting us?

"Your body no longer feels like it once did. Nor does it work like it once did. The body once a friend now an enemy intent on making your life a misery. How can we love a body that is continually tormenting us?" Share on X

It isn’t easy to love your body when it is continually reminding us that it’s flawed and wrecked with constant, debilitating pain. The first sensation I feel upon waking is intense, throbbing pain, and it is also the last thing I perceive before I go to sleep. If I am lucky to fall asleep, that is. However, more often than not, such intense, crippling pain keeps me awake all night, which those in the chronic illness community call painsomnia.

"It isn't easy to love your body when it continually reminds you that it's flawed and wrecked with constant, debilitating pain. It is challenging to love a body that lets you down and prevents you from living a 'normal' life." Share on X

In the morning, when I look in the mirror, all I can observe as I study my reflection is the extremely ashen complexion of my skin and the strikingly dark circles under my eyes. These two features make me look as tired and unwell as I feel. Even applying the best concealer I own does little to disguise the too dark circles under my eyes, or improve my complexion. Still, I look sick, affecting my self-esteem and becoming increasingly unconfident over my physical appearance.

It is challenging to love the part of your body that continually lets you down and prevents you from living a ‘normal’ life.

No, Loving Yourself Isn’t Easy When Chronically Ill

I hate my legs the most of any part of my body. They are the part of my body that hurts the most. I can no longer trust them as they frequently collapse from under me with no warning. As a result, I no longer feel safe in my own body, and it is a constant source of anxiety and worry. It is also beyond frustrating when my body refuses to go along with my plans.

"I no longer feel safe in my own body, and it is a constant source of anxiety and worry. It is also beyond frustrating when my body refuses to go along with my plans." Share on X

I feel self-conscious as I stumble around as my legs tremble beneath me. A gait similar to that of a drunk person; I feel people’s stares in judgment or puzzlement.

The constant failings of my body is a continual reminder that I am not in control of it, but instead am at the mercy of my own body.

"The constant failings of my body is a continual reminder that I am not in control of it, but instead am at the mercy of my own body." Share on X

With my legs and mobility worsening, I have become reliant on mobility aids to get around. Something that often makes me feel embarrassed and insecure. As I look around, I fail to see anyone else my age also needing such aids. I am unsuccessful in seeing myself or my experiences of living with a neurological disorder and disability reflected in the books, television programmes or films I surround myself with while trying to fill the void of my isolation. It often makes me question where, and even if I belong. As I feel I don’t belong, I struggle to make friends because it affects my self-worth and self-esteem. Just another reason why it can be a struggle to love myself.

"I can't see myself or my experiences of living with a neurological disorder reflected in the books, television programmes or films I surround myself with, making me question where, and even if I belong." Share on X

It Isn’t Easy to Love a Body That Holds You Back; Unable To Become The Person You Want To Be

It isn’t easy to love a body that holds you back. I had so many dreams and aspirations when I was young. I dreamed of a career as a psychologist, aspirations of travelling a little more, and perhaps marriage and children later on in life. But when my health deteriorated such dreams and aspirations seemingly became unreachable. And things that once were easy and now much more difficult due to the severity of the symptoms. Left, being unable to do very much by myself, leaves me feeling incredibly unproductive and worthless, to be honest. I feel trapped in the prison of my body, forced to endure painful and uncomfortable bodily sensations, feeling ashamed of how little I have achieved so far in my life.

"I feel trapped in the prison of my body, forced to endure painful and uncomfortable bodily sensations, feeling ashamed of how little I have achieved so far in my life." Share on X

Living a life in which I cannot do much, I always worry that I and my life are incredibly dull. With the inability to go out by myself, books, films and television programmes have become a passport to the outside world. With little experience or excitement, much of my conversations become focused on what I’ve read or seen. I worry that I have become boring, and is how I come across to others.

Trying To Not Let Chronic Illness Rob Me of Self-Love

Chronic illness has stolen so much from me, but I have also allowed it to rob me of self-love. But perhaps I have been looking at myself and my body all wrong. I have only been able to see what illness has taken from me. But as much it has taken, it has also given. When it feels the hardest, I should acknowledge all that my body can still do for me. At times, during a severe flare, it can feel that my entire body is failing I should shift my focus onto those parts that still are working.

"Chronic illness has stolen so much from me, but I have also allowed it to rob me of self-love." Share on X

I also need to remind myself that my distance from the world does not make me less, but instead gives me a unique perspective on life. When faced with the worst in life, you can appreciate and value the small pleasures in life, and because of it, we choose to be as good as we can to the world and those in it.

To combat the worthlessness and self-blame that chronic illness invokes, I instead need to embrace self-love. That means accepting myself and my illness despite wishing things were different. It also means yielding self-compassion when unable to do x, y or z and celebrating those times I can. As Whitney Houston once sang, “Learning to love yourself/Is the greatest love of all.”

"I need to accept myself and my illness despite wishing things were different. As Whitney Houston once sang, "Learning to love yourself/Is the greatest love of all." Share on X

Anxiety, like an unwanted stalker, has followed me for as long as I can remember.

Moments of panic and worry punctuated my life. Anxious thoughts overpowered my brain. All of which existed long before being diagnosed with a neurological disorder. Although the symptoms of which existed from a very young age, they became more pronounced as I grew up. However, doctors could find no cause to explain such symptoms. The anxiety that had always been a part of my life became a source of blame for my symptoms.

After many years of searching for answers, and many more doctors’ visits and hospital appointments, I finally had answers. I had a diagnosis and a physical explanation for my symptoms.

Often when doctors can find no organic cause for the symptoms a patient is enduring, anxiety is blamed -photo by Suzy Hazelwood from Pexels.

The anxiety that had long pursued me was, in fact, a symptom of a neurological disorder and not the cause of it as doctors had long suspected. You would expect that finally having answers would lessen and quiet it, but instead, this diagnosis only became an amplifier for my existing anxiety.

It used to be a complete mystery, but now I have a better understanding of anxiety through the prism of chronic illness. Now I realise that anxiety is not a separate issue but has developed because of a chronic illness.

"It used to be a complete mystery, but now I have a better understanding of anxiety through the prism of chronic illness. Anxiety is not a separate issue but has developed because of chronic illness." Share on X

Anxiety: Another Symptom of Living With Chronic Illness

On reflection, the sudden appearance of intense, mysterious symptoms triggered the fear and panic that often paralysed me, stopping me in my tracks. When I understood the symptoms and why they were occurring, it no longer elicited the same terror that they used to. The anxiety was still an issue, but I could now categorise it as another symptom of living with a chronic illness.

Every new twinge or pain causes a wave of anxiety as I worry what it means for me and my future.

There is still much of my condition that is shrouded in mystery. And it’s this unknown, the uncertainty that incites much anxiety in my life. With every new pain, or spasm, or symptom, an alarm bell begins to sound. I question whether such a sensation is normal, something related to my condition, or something else entirely. I worry as I try to work out if I should be worried.

"There is still much of my condition that is shrouded in mystery. And it's this unknown, the uncertainty that incites much anxiety in my life." Share on X

Becoming Hypersensitive and Overly Vigilant of Your Body and Health

When symptoms have gone on for so long, you can no longer remember how it feels to reside inside a ‘normal’ and fully functioning body. As a result, you aren’t always able to trust your perception regarding your body and subsequent health. As a result, you become incredibly hypersensitive and vigilant of your body in ways that you would otherwise never need to be.

"You aren't always able to trust your perception regarding your body. As a result, you become incredibly hypersensitive and vigilant of your body in ways that you would otherwise never need to be." Share on X

The unpredictability and lack of control over such relentless symptoms often mean that you can never really be prepared for when they are suddenly going to appear.

I usually spend energy, perhaps more energy than I can spare worrying on what people think of me, or whether I will be able to walk or get out of bed each new morning when I wake. Before I’ve begun my day, anxiety is there, as I worry what the symptoms will have in store for me for the day ahead. Thoughts fly through my head, such as “If I do this today, will it aggravate and worsen the symptoms?”

"Before I've begun my day, anxiety is there, as I worry what the symptoms will have in store for me for the day ahead." Share on X
Every day I worry that anything I do will somehow trigger or worsen symptoms.

On rare occasions, when mornings are uneventful, and symptoms are not present, there is a moment of joy. I imagine what can be done with this day of relative freedom from the confines of illness. However, this moment of ecstasy proves to be fleeting as once again, anxiety resurfaces. Thoughts such as “I might be feeling well, but I know that it won’t last for long” run through my mind. Anxious that at any moment, the symptoms will suddenly reemerge spoiling the day. There is also the worry of doing anything that may trigger the symptoms or worsen them.

Anxious When Leaving The House Alongside Physical Symptoms

In my experience, the unpleasant and relentless symptoms are difficult enough to live with and manage inside the safety of home. Symptoms can often be unpredictable and severe with nothing to do but to endure them. But symptoms can be much more challenging to control or predict when outside the house with all the outside world’s distractions. And as such, anxiety can often rear its head when needing to venture out into the outside world. The fear that the symptoms will suddenly appear ruining plans and our fun. Or when they do occur, we will be unable to manage or control them, thus leaving them to become out of control.

When living with a neurological condition, there can be constant anxiety of suffering a fall and left unable to get back up. Photo by Daria Shevtsova from Pexels

The most severe symptom that I have to contend with is the weakness and trembling in my legs.

Such symptoms can result in them giving way, without warning and leaving me lying in a heap on the floor. Such occurrences can be frightening even when at home. Leaving the house can be daunting. Images of my legs suddenly collapsing, leaving me lying in the middle of a road flash through my mind, or falling over and not being able to get back up. Flashbacks of the times such incidents have also haunted my thoughts, leaving a heavy pit of worry deep in the bottom my stomach

‘Anxious because I am unable to trust my own body’

A lot of the anxiety I experience is a result of not being able to trust my body. Every day it’s hit or miss whether my body will hold out. I don’t trust that my legs will allow me to walk. I don’t trust that I won’t get dizzy and need to hold onto something to steady myself. As a result of these severe, debilitating symptoms, I no longer feel safe anywhere. Anywhere can now seem threatening and unsafe, as my symptoms can follow me anywhere, so anxiety frequently follows me also.

"A lot of the anxiety I experience is a result of not being able to trust my body. Every day it's hit or miss whether my body will hold out. I don't trust that my legs will allow me to walk. I don't trust that I won't get dizzy." Share on X
"I no longer feel safe anywhere. Anywhere can now seem threatening and unsafe, as my symptoms can follow me anywhere, so anxiety frequently follows me also." Share on X

The many what-ifs surrounding my illness and all the uncertainty it creates means that my thoughts are continually racing. My mind needs to be frequently distracted; otherwise, I can spiral into panic. It is easy to find distractions at home. I practice mindfulness or play fun word games or complete jigsaw puzzles. I read or exercise to keep my mind and body as healthy as possible. But once I am out, the things I can do to distract myself are limited, so anxiety skyrockets. I become more vigilant of every sensation and symptom that is occurring within my body. The trembling in my legs heightens to the point that it feels they will collapse at any second.

Being At The Mercy of Both Anxiety and Chronic Illness

When living with anxiety and chronic illness, you are at the mercy of both. When there is a flare in either the symptoms of chronic illness or anxiety, the other will follow. Or when anxious, the already present symptoms will almost certainly worsen. When experiencing a severe, debilitating, crippling flare anxiety will also. Juggling anxiety on top of illness isn’t impossible but continually proves to be a frustrating and time-consuming challenge to master.

Anxiety has always been present, a by-product of an illness that I had yet to be aware of and continues to be a mystery. But it has been easier to understand through the prism of chronic illness. Anxiety is not a separate issue from living with a chronic illness but often develops because of it.

"Anxiety has always been present, a by-product of an illness that I had yet to be aware of and continues to be a mystery. But it has been easier to understand through the prism of chronic illness." Share on X

If living with a chronic illness was a battle, then it is one that I am unable to win. The skills such as mindfulness and breathing exercise have proven to be useful in lessening the anxiety but have had no effect on the physical symptoms I endure. But perhaps the anxiety that accompanies it is one that I can defeat.

Anxiety Through The Prism of Chronic Illness

An Expert In Faking Being Well

A life with chronic illness, the world often indeed does feel like a stage, and I an actor within it. Every day when breaking out into the world, I feel like I am performing; acting for the benefit of others and often myself.  As such, every day becomes a performance of appearing well.

"Every day when breaking out into the world, I feel like I am performing; acting for the benefit of others and often myself.  As such, every day becomes a performance of appearing well." Share on X

Pretending that nothing is wrong with me or my body even if it is far from the truth.  I have become an expert in hiding my pain and discomfort that is blighting the present.

Just this very morning; the moment I woke, I was immediately greeted by intense, stabbing pain down my spine and legs. Legs so weakened by pain and fragility I was unable to get out of bed for a long while. When I did, however, after experiencing a severe spasm in my legs, they immediately gave way, causing a significant fall, resulting in several more bruises to add to my extensive collection.

Hiding The Anguish of Living With Chronic Illness From The World

Despite this, however, I selected an attractive outfit, applied make-up and put on my most convincing smile and left the house. And as I left the house, I put on my best performance of appearing well.

I often question, however, why I put in so much effort in hiding the truth of my anguish from others. By doing so, how will other people know to help and support me? And during recent times, there has been a great emphasis on being authentic, so should I not want to let others see me as I truly am?

Make-up is one way in which helps in my everyday performance of appearing well
Make-up is just one way in which those of us living with chronic illness use to help construct the facade that we show to the world to hide our illness and its effects.

On the worst of days, and my weakest moments, I bear witness to the reality of how sick I have become and the devastating impact that this condition and subsequent disability have had on my life. It is only then that the performance of appearing well becomes abandoned, and the truth of my existence revealed. It is only during these episodes when I can peer at myself under a microscope, confronted by the aspects of this illness that affects every decision, every breath, every day and every second of my life.

"On the worst of days, and my weakest moments, I bear witness to the reality of how sick I have become. It is only then that the performance of appearing well becomes abandoned, and the truth of my existence revealed." Share on X

Lately, every day, every hour, and every minute consists of tentative steps forward, only forced to take two steps backwards. The pain often so overwhelming that it takes my breath away. Every single step feels like a struggle, and one which takes monumental effort and in which reaching the bathroom is a tremendous win.  It is my daily struggle. And my survival.

It is disheartening having to acknowledge our distrust of the bodies given to us.  And it is dispiriting that our lives have become centred around fighting the inevitable sickness that has befallen us or falling when we are unable to fight any longer. 

The Everyday Performance of Appearing Well

That’s why we, the chronically ill perform; and why we become experts in faking being well, to escape the reality of our life that is primarily dictated by illness and to feel like we can be with you, the healthy.  For a few short hours, it provides a sense of normalcy, in a life that rarely feels as such.  And allowing the facade of health and joy and a brief illusion of freedom from our prisons.  

"That's why we, the chronically ill perform; and why we become experts in faking being well, to escape the reality of our life that is primarily dictated by illness and to feel like we can be with you, the healthy." Share on X
Performing being well and healthy although extremely challenging, especially when symptoms are severe allows a brief illusion of freedom from the shackles of chronic illness to enjoy a rare slice of normality. Image by Jackson David from Pixabay.

Because, unfortunately, we cannot return the malfunctioning body that we have inherited from the diagnosis that has blighted our lives. These faulty bodies do not come with warranties, and no amount of money is going to reverse the permanent damage that illness has inflicted on our bodies or our lives. 

Our lives become centred around our diagnosis, the management of it, and the fear of what the future entails.  All of which is scary and a burden to carry permanently. Which is why we snatch any chance we can to act healthy. To perform, and fake at being something that we are not.  The horror of what it is to live with a chronic illness can temporarily fade into the background if we can pass for what we desperately wish we could be – healthy. 

"The horror of what it is to live with a chronic illness can temporarily fade into the background if we can pass for what we desperately wish we could be – healthy." Share on X

And playing at being healthy also allows us to think about something other than our diagnosis. Of course, we cannot forget as the symptoms are always there, but it’s still welcome to have a distraction from them even for a short time.  It acts as a reminder that we are more than our illness. And though it may not always feel like it, there are so many more pieces to our lives than the diagnosis that it is often the most prominent part. 

Illness Causes Us To Construct A Carefully Constructed Shell

So though you may see us smiling, laughing, playing and dancing while not lying or resting, crying or complaining know that it does not mean we are not suffering.

Instead, know that we are occupying a carefully constructed, fragile shell. A shell that is hiding the pain and anguish that is caused by continually living with a chronic illness. And the worse our symptoms are, the more determined we are to ensure that our performance remains convincing.

"We become adept at hiding the pain and anguish that is caused by continually living with a chronic illness. And the worse our symptoms are, the more determined we are to ensure that our performance remains convincing." Share on X
The shell that we have constructed in order to pass ourselves off as being well is extremely fragile especially when symptoms are especially severe. Image by Jackson David from Pixabay.

Know that we have spent years perfecting our carefully constructed shell and performance that convinces others that nothing is wrong. 

But the truth is that our entire being has become consumed by pain and fatigue. Often, all we want is to give up and succumb to the misery that we’ve locked deep inside. The suffering that which we’ve kept secret and hidden from those around us.

We hide behind a cloak of disguise and deceit, terrified of the truth of our pain and anguish becoming exposed. At the same time, we wish we didn’t have to keep such walls, cloaks, disguises, performances or excuses. We long for those to listen to our stories and experiences and help us to disrobe the facade we’ve had to create and live beneath to save ourselves from stigma, judgement, prejudice and ignorance.

"We hide behind a cloak of disguise and deceit, terrified of the truth of our pain and anguish becoming exposed. At the same time, we wish we didn't have to keep such walls, cloaks, disguises, performances or excuses." Share on X

We wish we could be our true selves even if it our true, sick self.

The Everyday Performance of Appearing Well: When Chronic Illness Makes You An Expert in Faking Being Well

Living with a chronic invisible illness is both a blessing and a curse. I live with a condition called FND, which remains hidden. One of the evils of such a condition is everything which you don’t see about living with the everyday hidden struggles.

The Blessing of Living With An Invisible Illness

The blessing of such conditions lies in the notion that the illness, and it’s resulting limitations do not precede us. And allows us to choose with whom to confide in, and when and how. Illness and it’s resulting limitations remaining a well-kept secret. A secret that does not define us or how others perceive us; and not limited by popular stereotypes or sweeping generalisations.

When chronic illness remains invisible, people do not hold lower expectations of us, that many whose conditions are visible endure. It can be a blessing that even when feeling awful, others often don’t notice. Makeup can help hide the tired bags under the eyes and conceal the other visible effects of chronic illness. A fake smile can be painted to trick those who don’t know us well or the struggles we are forced to endure always.

The invisibility of chronic illness allows us the opportunity to blend into the ranks of ‘normality.’ Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well.

"Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well." Share on X

But It’s Merely An Act: A Performance To Fool

But it is just that – an act. A performance that we regularly execute to make everyone else believe everything is fine. In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness and its accompanying symptoms supersede everything else, and this performance becomes difficult to sustain. And the magical cloak slips revealing the struggles that were once exquisitely hidden.

"In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness supersede everything else, and this performance becomes difficult to sustain." Share on X

One of the most frustrating curses of living with an invisible chronic illness is just that – concealed to the outside world. When we do share our experiences of the suffering and pain, it is often downplayed, or dismissed by those listening. Others glance at our young, healthy-appearing bodies and the mask that we have had years perfecting, and exclaim “But you look so good!” And it is frustrating when others continuously think that we cope with living with a chronic illness so well, not realising how heavy the demands of it all is every day.

Physically we are seen by those in the outside world, but what you don't see is the struggles faced by those, like me, who are living with an invisible illness
Physically we are seen by those in the outside world, but what you don’t see is the struggles faced by those, like me, who are living with an invisible illness

It sounds much like a compliment. But for those of us living with a chronic illness, it is a statement of disbelief and scepticism. But what the outside world sees; what we choose to let others see is a carefully constructed mask. A mask that allows us to traverse amongst the able-bodied world that exists outside. And to pass as ‘normal’ and healthy and having to avoid defending my diagnosis to prospective sceptics.

A curse of living with such an illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day. The inability for others to bear witness to all of the ways FND affects every facet of my life. It’s the invisible battles as well as others unable to see or understand the effect they have only adds to the loneliness that already permeates my already microscopic world.

"A curse of living with an invisible illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day." Share on X

What You Don’t See (Or Don’t Choose to See)

What you don’t see is that I am faking being well; faking health to preserve my dignity, energy and ability to accomplish whatever it is I’m doing before my legs fail me and I collapse.

You don't see that we are often faking at being well. Adopting a mask to wear when out in the wider world to fool people into believing we are like one of them. You also don't see the struggle it takes in keeping this mask on at all times.
You don’t see that we are often faking at being well. Adopting a mask to wear when out in the world to fool people into believing we are like one of them. You also don’t see the struggle it takes in keeping this mask on at all times. Photo by Mash Babkova from Pexels

You don’t know the effort it takes to fake at being well. And although faking is difficult, it is often easier than exposing the pain that exists, and then having to use precious and already limited energy to defend my permanent state of being unwell.

What you don’t see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain. The pain that I attempt to overlook when among society.

"What you don't see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain." Share on X

You Don’t See the Fear and Anxiety That Endures Because of FND

What you don’t see is the overwhelming fear that encroaches over every aspect of my life. The anxiety that this condition will continue to worsen. The concern that the list of limitations that already exist will continue to get longer; and the number of losses increasing exponentially. The underlying fear that illness will become the sole existence of my life. And the fear that I will end up being all alone in this world.

What you don't see is the anxiety and fear that begins to incite when having to leave the house.  The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone.
What you don’t see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone.

What you don’t see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone. You don’t see the self-doubt that always exists; continually doubting what I am capable of and overanalysing and questioning every decision made. I often begin to overestimate the limitations that now prevails due to FND, regularly convincing myself that I cannot do something or handle going somewhere because of the disabling symptoms that exist because of it.

"What you don't see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone." Share on X

You Don’t See The Enduring Impact of FND

You don’t see the excruciating pain that greets me in the morning as I wake after a restless night of painsomnia. Or the number of times it takes for me to even get out of bed in the morning. You don’t see as the weakness in my legs prevails, refusing to cooperate or bear my body weight. You don’t observe the nights my body contorts from unrelenting and disabling pain that radiates throughout my legs. Pain that often keeps me awake hours into the fledgeling mornings.

You don't see the excruciating nights spent writhing in pain as it ravages your body and results in painsomnia
You don’t see the excruciating nights spent writhing in pain as it ravages your body and results in painsomnia

You don’t see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body. Or the days spent crying or feeling anger at all the things I can longer do and everything I have lost as an individual.

"You don't see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body." Share on X

What you don’t see is the constant dizziness and vertigo that consumes my entire life. Nor can you see the visual disturbances that make it incredibly difficult to be able to focus on, or trust anything that I see in my field of vision.

What you don’t see is the incredible loneliness that I feel because of this condition. The friends that I have lost along my journey of trying to fit into a world that I seemingly do not belong. You do not bear witness of the challenge in making new friends or the difficulties in maintaining friendships because I am primarily housebound.

You don’t witness the anguish and frustration of after gaining a much-worked for a degree; I am not able to work due to the disabling symptoms that accompany FND. It hurts knowing that when you look at me, you wish that you didn’t have to work either. Or the thought that you may think that I am exaggerating and only playing hooky.

You Don’t See the Struggles and Impact of The Symptoms of FND Can Have

You do not witness the unimaginable struggle of walking or standing in a queue while my legs are severely trembling. The trembling so relentless that it is the only thing my mind can focus on and nothing else. You do not see the unimaginable anxiety that courses through my mind that my legs will suddenly give way, leaving me collapsed in a heap on the floor. You cannot see the images that flood my head of the many times it has happened before. And you cannot know the fear it creates about going out at all, or how it easy it becomes to prevent certain places or situations to avoid it from happening again.

You do not witness the unimaginable struggle of walking or standing in a queue while my legs are severely trembling. The trembling so relentless that it is the only thing my mind can focus on and nothing else. Photo by Rodion Kutsaev on Unsplash

You don’t see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop.

"You don't see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop." Share on X

You don’t see the pill I am forced to count out each week, or the side effects I have to plan my life around. Nor can you see the ongoing pain. Or depression. The endeavour to remain resilient in the face of all of the struggles.

The Lessons Learnt When Battling An Invisible Fight

These are only some of the struggles faced by someone living with an invisible condition such as FND. Trust me; there are so many more. And as I continue to battle and wrestle with the enduring effects of this current flare, I begin to feel more of the frustrations because of it’s lack of visibility and the lack of understanding of the impact they have on my life.

Everyone you meet is fighting a battle you know nothing about, or even understand.
Fighting a battle that is not known by anyone other than myself has taught me invaluable lessons. One such lesson is that no matter how someone looks or acts, you can never know what’s happening in their lives. Photo by Timothy Eberly on Unsplash

Fighting a battle that is not recognised by anyone other than myself has taught me an invaluable lesson. It has taught me that no matter how someone looks or acts, you never know what’s happening in their lives.

So be kind, for everyone you meet is fighting a battle you know nothing about, or even understand.

But perhaps it is also an important lesson to open up more and articulate to others about my experiences and struggles of living with an invisible illness. To help people, and especially those closest to me the toll it can take on every area of my life.

Perhaps such battles remain invisible because we are often too reluctant to voice them.

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This November I am using the prompts to discuss the before and afters of life with a chronic illness.

Life is messy. It comes with many responsibilities and obligations, and as we become older, these only increase. One such responsibility and one that often is accompanied by stress and worry involve financial responsibilities that characterise adult life.

Becoming an adult, although exciting; the thrilling prospect of freedom also coincides with the realisation of the financial burden of everyday life. The daily life of being an adult. The sudden understanding of everything that needs paying for when a responsible adult.

The Debt Incurred By Fun and Spontaneity

When becoming an adult with a chronic illness, there is an added financial burden — a sudden and new responsibility for paying for all the paraphernalia that accompanies life with a long-term condition. When living with a chronic illness, medications need paying as well as aids to make life easier when symptoms become out of control, and so on.

But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken. Often there is an apparent reason for the sudden flare in symptoms or a decline in energy levels. Sometimes, there is no apparent reason at all, and are left speculating the reason for the unexpected presence of symptoms.

"But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken." Share on X
When living with a chronic illness there is a hefty payback for every expansion of effort and energy. Often such a payback comes in the form of a severe and debilitating flare in symptoms.

There is now no room to be spontaneous and reckless with our time. Doing so doing can provoke and anger the symptoms that are always present. As much as we take delight in going out, there is, unfortunately, a payback of the effort and energy that the given fun had required.

Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back. The payback of every moment of fun and spontaneity is a debilitating increase in the symptoms that accompany such conditions.

"Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back." Share on X

Plunging Into The Unknown Possibilities of The Future

We often like plunging into the unknown possibilities that the future offers. We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread. Those events and fun outings that we would once look forward to now induces fear due to the uncertainty that surrounds life with a chronic condition.

"We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread." Share on X

We are unable to pencil in the dates when it would be most convenient for symptoms to appear; they do so with no concern or care for the plans made in advance. Instead, arrangements are made with no knowledge of how we are going to feel on the day in question. Or the state our bodies are going to be in on the day in question. Plans that should induce joy and excitement now only prompts thoughts of ‘what if.’

It can be exciting to plunge into the unknown possibilities that the future holds, but when living with chronic illness, however, it can trigger feelings of anxiety and fear due to the uncertainty that defines living with a chronic condition.

We look ahead, and instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering.

"Instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering." Share on X

“No, you may not go to the ball!”

Ah, remember the blissful and carefree days before the existence of illness and its numerous symptoms? The many invitations that we’d receive to ask for our attendance to social gatherings hosted by friends or family. The opportunity to escape the monotony of a night at home; the promise that we will go to the ball.

Now, the future and the continued presence of chronic illness, the doors to such balls are firmly closed to us. Usually, we begin to be overlooked, no longer invited to parties because illness has forced us to cancel on numerous occasions in the past. Or, sometimes people believe that we will not be physically well to attend. Our fairy godmother no longer in existence, and no longer able to go to such festivities.

Invitations that now arrive in this new present and continued future take the form of letters for doctors and hospital appointments. Those living with a chronic illness will know the difficulties of going out when plagued with disabling symptoms. At times, it can become so bad that the only time we do go out is to such appointments.

"The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out." Share on X

The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out.

Organising Life Around The Changes That Illness Brings

The past, once full of spontaneity and life led on impulse becomes no more with the arrival of a chronic illness. The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations caused by this permanent new companion.

"The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations of chronic illness." Share on X

Life now and in the future, are unable to cope with days crammed full of activity due to such limitations chronic illness inevitably brings. So we must reevaluate what is most important to us, and what we can do to organise our days into something manageable.

calendar of appointments - life with a chronic illness!
A life with a chronic illness needs careful organising – calendar often full of doctor and hospital appointments

To create a ‘new normal’ out of the broken and destructive pieces of our old lives.

Our calendars once crammed full with future parties, and all the invitations that asked for our attendance now erased. In its place, a carefully organised calendar detailing the many doctor and hospital appointments that accompany this new chronic life.

None of Us Knows What The Future Holds

Oh, the future which in the past seemed so bright and exciting. The endless possibilities that it once promised now seemingly lost forever. Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it.

"Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it." Share on X

Still, there are a million questions and uncertainties that the future holds out in its hands. Even living with the certainty of illness, there are still endless possibilities to explore if only we find the courage to do so.

Yes, the possibilities might be sparse and limited due to the many limitations that lie in the wake of illness, but they do exist. And for that provides a glimmer of hope and promise.

The Before and Afters of Life With Chronic Illness

Life is often a series of before and afters especially when we experience something significant. When diagnosed with a chronic illness life becomes defined by the before and afters of life with chronic illness.

When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness. It is up to us to make the most of the unchangeable situation.

"When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness." Share on X
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