Tag

spoonie life

Browsing
Living Inauthentically With Chronic Illness
In Chronic Illness

Living Inauthentically With Chronic Illness

1 Comment

When disabled by severe and debilitating symptoms, we find solace in any way we are able. Not that anyone would know as I continue living inauthentically with chronic illness.  While finding myself incapacitated by such relentlessly debilitating symptoms, I have found comfort and solace in the written word.  And as a result, have been on somewhat of a book-binge. 

One of my favourite reads was a beautiful and life-affirming novel ‘The Authenticity Project.’

‘The Authenticity Project’ by Clare Pooley is a charming novel about six strangers with one universal thing in common. The truth is that each of them is being inauthentic regarding their life; their lives aren’t always what they make them out to be.

‘The Authenticity Project’ by Clare Pooley, a charming, uplifting and life-affirming novel. A perfect Summer read!

It starts with an eccentric artist and septuagenarian, Julian, desperate to confess to the deep loneliness he feels. And so he begins The Authenticity Project. A small green notebook which contains the authentic truth about his life.  He then leaves the journal on a table in Monica’s cafe in a bid to encourage others to share their own.  And as these five other strangers come into contact with the book and share the truth about their lives, it leads to a life-changing world of friendship and genuine connections.  

As I finished the book, continuing to think about the story long after I turned the last page, I started to think about my own life. In doing so, I began to question whether I am authentic and truthful regarding my own life. Or, as like the characters in the book, my life is not always as I make it out to be. Moreover, I questioned whether I was authentic to my reality of living with a long-term neurological disorder.

What does it mean to be authentic?

The definition of authenticity is the quality of being real or true.

Authenticity means coming from a real place within. It is being wholly ourselves, and not an imitation of what we think we should be or told what we should be.

Living Inauthentically With Chronic Illness

The truth is, I am not sure that I am very truthful in regards to my life, specifically my life with FND. It is not an aspect of my everyday life that I am comfortable talking about, and so I choose not to. Even when asked questions regarding my use of a crutch, I answer quickly and swiftly deflect the inquest that inevitably follows. The dreaded question, “How are you?” swiftly brushed off with a simple, “Fine.” Even, when it is far from the actual truth; a reply also used on the worst of days.

"The dreaded question, "How are you?" swiftly brushed off with a simple, "Fine." Even, when it is far from the actual truth; a reply also used on the worst of days." Share on X
In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others.

In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others. It becomes more comfortable, therefore, to shut the words about those parts we hate away into the dark recesses of our minds. Shut them away in an attempt to forget the existence of them, or to hide them from the rest of the world. And so we begin living inauthentically with chronic illness.

"In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others." Share on X

It can even be hard to be authentic in the online world

Sure, it is easier to be more open on social media, which allows you a small degree of anonymity. A medium that enables you to fade into the crowd, to blend in and disguising oneself as being ‘normal’. I find that I am much more eloquent when writing rather than speaking aloud.  

Is it actually easier to be authentic online, or does it make it easier to be the person we want to be rather than the person we are? Photo by Porapak Apichodilok from Pexels.

Despite this, however, I am not much more open online, particularly on social media. Like most people, my timeline is mostly a highlight reel of the rare, good days, uplifting moments and events to cherish, especially on Facebook, and the main reason why my timeline is incredibly sporadic in its updates.  

"Like most people, my timeline is mostly a highlight reel of the rare, good days, uplifting moments and events to cherish, especially on Facebook, and the main reason why my timeline is incredibly sporadic in its updates." Share on X

Inauthentic by editing out the bad days

But what I don’t reveal in the online world I participate in, is the many, many bad days that are caused by the severe, continuous symptoms of FND. Those bad days, which heavily outweigh the good, are erased. It fails to memorialise those days in which the excruciating, debilitating pain overwhelms everything else; the days in which the pain is the victor, and I’m its victim.

"My online world fails to memorialise those days in which the excruciating, debilitating pain overwhelms everything else; the days in which the pain is the victor, and I'm its victim." Share on X

Nor does it mention the days in which my stubborn, uncooperative legs refuse to work, and unable to get out of bed. Neither are the days in which my legs give way, causing a fall down the stairs, or a fall in public commemorated online for the whole world to observe. And neither exists, photographs of the many injuries sustained during such falls and accidents. I hide my condition, and its effect away, and choose instead to hide behind a mask.

Being inauthentic regarding life with chronic illness, we wear a mask and conceal the effects that it has on our physical and mental health
"Nor does it mention the days in which my uncooperative legs refuse to work. Neither are the days in which my legs give way, causing a fall down the stairs, or a fall in public commemorated online for the whole world to observe." Share on X

Perhaps, it is easier to be inauthentic online where we can choose who we want to be instead of the person we are.

"Perhaps, it is easier to be inauthentic online where we can choose who we want to be instead of the person we are." Share on X

The Difficulty of Authenticity for the Chronically Ill

It is easy sharing the happy, carefree moments of our lives. The good parts of our daily lives, comprised of our hobbies, nights out with friends, and holidays, for example. But why is it different when sharing the details of the most painful aspects of our lives, such as living with chronic illness?

Why is there such a stigma around vulnerability and revealing our raw, authentic selves? And why for the chronically ill community is there such awkwardness surrounding our lives with chronic illness?

"For me, I like to pretend that FND does not have me; that it does not define me. But who, am I kidding? FND has me; has me tightly in its grasp.  How can it not, when days and nights are dominated by such relentless symptoms." Share on X

For me, I like to pretend that FND does not have me; that it does not define me. But who, am I kidding? FND has me; has me tightly in its grasp.  How can it not, when days and nights are dominated by such relentless, disabling symptoms. And how can it not when every facet of my life is dependent on that day’s symptoms.  Of course, FND does not wholly define me, but it does to a degree.  As much as I would like to disagree, it is an integral part of my story. 

Authentiity is hard to find amid our struggles with chronic illness

We are often living inauthentically regarding our lives with a chronic illness for fear of being a burden or a fear of being pitied. And also we don’t want to be all about our diagnosis. We want to be seen and acknowledged for the person we are, instead of the person we were. There is a fear that by documenting the bad days, and the accidents that befall us, we will be accused of doing so to gain sympathy or attention.

"We are often living inauthentically regarding our lives with a chronic illness for fear of being a burden or a fear of being pitied. And also we don't want to be all about our diagnosis." Share on X

I cannot tell you the hurt and sorrow that comes when your illness becomes the first topic of conversation.  It feels that others are suggesting that it is the most exciting thing about you, which is never the case.  It can feel that others are reducing to us to a diagnosis; a label. 

The Advantages of Being Authentically Ill

The biggest lesson that one can take from ‘The Authenticity Project’ is the gifts that being authentic can bring.  By being so, it can foster real connections, just like the characters in the book.  And for those living with chronic illness, being vulnerable and authentic regarding the struggles we face, can help reduce the feelings of loneliness and isolation that it often causes. By sharing our truths, we can find others going through the same experiences. And it can remind us that we are not alone and everything we feel as a result is valid and understood.

Being authentic, open and honest about the struggles of living with chronic illness, we are able to foster connections with others, and help reduce feelings of loneliness and isolation that are so often accompanying symptoms.
"For those living with chronic illness, being vulnerable and authentic regarding the struggles we face, can help reduce the feelings of loneliness and isolation that it often causes." Share on X

So perhaps, I need to stop editing my social media and my conversations regarding my life with FND. And to start sharing the bad days and struggles as well as those rare good moments that occur.

I need to incorporate my own ‘Authenticity Project’ to foster real, and authentic connections in my life.

By doing so, perhaps I won’t feel as alone.

by
Keep Reading
Woman with hand over face and text that reads 'Chronic Illness: A Harbinger of Shame and Guilt'
In Chronic Illness

Chronic Illness: A Harbinger of Shame & Guilt

2 Comments

Shame, Guilt and Chronic Illness

When living with chronic illness, there are many ups and downs. There are good times, and there are the inevitable bad, and challenging times. Times in which it feels, like illness and its coexisting symptoms, are winning, having full control of our lives. Those days that feel that the pain and other disabling symptoms will never end; and as though the ups now ceases to exist and may never return.

When continuously ravaged by cruel and relentless symptoms, it is crucial to create a safe and reassuring comfort zone. I have found such places, or they would be a safe and revivifying sanctuary if the symptoms that accompany FND would not invade them.

"I have found safe and reassuring sanctuaries, or at least they would be if the symptoms that accompany FND would not invade them, leading to feelings of being unsafe and anxiety." Share on X

The Vulnerability and Fragility of Being Sick

Even in these harmless and benign sanctuaries, the severity of symptoms has become rebellious and uncontrollable. The trembling in the legs constant and the falls happen with no warning; its appearance sudden and shocking.

Picture of woman covering her face with both hands, with another pair of hands covering both sides of her head
Shame and guilt becomes another unexpected side effect of living with a chronic illness

As such nowhere, not even my own home feels safe at this moment. And as a result, I have never felt more vulnerable. The vulnerability of being in so much pain that every step is jarring. And never knowing if the next step will be the last before my legs unexpectedly give way. A situation that often leaves me lying in a heap on the floor.

Chronic Illness: A Harbinger of Shame and Guilt

As such, these feelings of vulnerability and fragility become harbingers of shame and guilt. It seems strange to feel guilty for being ill; for something that we had no say in and have no control over. But despite this, both guilt and shame become another unexpected side effect of living with chronic illness.

"It seems strange to feel guilty for being ill; for something that we had no say in and have no control over. But despite this, both guilt and shame become another unexpected side effect of living with chronic illness." Share on X

Guilt, an often too familiar emotion experienced when becoming chronically ill. But one, that is easy to understand its origins. 

The feelings of guilt arising for being a burden on others, and for not doing our share.  Remorse ascending for being sick as it begins to affects others so significantly.   Guilt and shame originate for the things we can no longer do, guilty for cancelling plans, and for needing constant help.

"Guilt and shame originate for the things we can no longer do, guilty for cancelling plans, and for needing constant help." Share on X

Shame, on the other hand, is far more complex. Whereas, guilt arises from feelings of regret about something you have done wrong, or for things you can’t do. Shame, on the contrary, can be felt even when we have not done anything wrong. An emotion connected more to who we are and who we believe others perceive us to be.

The Cruel Whispers of Lies By Shame About Life With Chronic Illness

When living with chronic illness, its mere existence permeates through every facet of our lives.  And as it does so, the feelings of shame begin to cut to the most profound fragments of our identity. And although illness claimed us, without our consent and for which we have control, we begin to feel shame for being sick. 

"Although illness claimed us, without our consent and for which we have control, we begin to feel shame for being sick."  Share on X

Shame claws it’s way into our subconscious, whispering vicious lies, implying that we no longer matter, that we no longer have worth. Shame speaks words of inadequacy, throughout the darkest and most challenging days with chronic illness and its symptoms. 

Shame and guilt bullies and demeans us even more so during the darkest and most challenging times with chronic illness. Photo by Kevin Jesus Horacio on Unsplash.

Often, when driven by shame, those living with chronic illness tend to push harder, ignoring symptoms, and neglecting overall health. But which only results in worsening health, symptoms further deteriorating when compounded with stress.

"Shame speaks words of inadequacy, throughout the darkest and most challenging days with chronic illness and its symptoms."  Share on X

We try and fight against these lies, but often through the darkest times, shame wins as it attacks our character. It often paints us as lazy, incompetent, unreliable and weak. It persuades us, whether real or imagined that others see us as fakers, catastrophisers, or merely an inconvenience.

Life Defined By What’s Wrong

As I lie here, disabled by the symptoms that continually inflict my body, I can say that I feel shame that I am ill. 

I feel shame at the thought that the illness has gone on for so long. Shame torturing me with ideas that if only I was stronger, or had made better choices, then surely I could have overcome this affliction long before it started to dictate my entire existence. 

"I feel shame that chronic illness had become so intense that my whole life had become defined by what's wrong, and not managing to overcome this affliction long before it started to dictate my life." Share on X

I feel shame that chronic illness has become so intense that my whole life has become defined by what’s wrong. 

The Shame Here and Now

And as I lie here, disabled by severe and relentless symptoms, and the limitations that currently rule my life, shame is once again whispering its vitriol lies. Often insinuating that these limitations are entirely in my head if I were only stronger than I would be able to defeat such restrictions on my life and as such claim my life back from the evil clutches of FND.

The shame further reinforced when such limitations win, and I am left unable to do or go somewhere that I had previously planned. Or the times that I had to leave suddenly after starting to feel unwell; the symptoms suddenly appearing out of nowhere. Or the times when the anxiety about suddenly becoming ill or symptoms suddenly appearing, thereby becoming victorious over my aspirations and hope.

I feel shame for those time that the positivity that I so often exude gets chipped away and instead most days during the challenging times, I battle overwhelming feelings of anxiety, despair and hopelessness. The shame and guilt are becoming overwhelming at the thought that this is now my life.  And the idea of never getting better.

"I feel shame for those time that the positivity that I so often exude gets chipped away and instead most days during the challenging times, I battle overwhelming feelings of anxiety, despair and hopelessness." Share on X

And I feel shame for the number of times the symptoms of FND have knocked me down, unable to get back up.

Fall seven times, get up eight | Japanese Proverb

It is easy to remember the times when knocked down and unable to get back up by the severe and debilitating symptoms of chronic illness.  And as a result, we forget the number of times when knocked down, but through strength and resilience, we immediately get back on our feet. 

Shame implies fault. We need to realise that there is no fault when living with chronic illness. Instead, we need to understand that there is instead a basis for pride. Pride, as we still we stand and rise, and continue to face each day in the face of adversity. To be grateful for that which we can still do despite the many symptoms that arise each day.

In her book, Daring Greatly’, Brené Brown writes:

“Shame derives its power from being unspeakable…If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees.  Shame hates having words wrapped around it.  If we speak shame, it begins to wither.”

Opening up about feeling shame and guilt in my battle with FND is incredibly difficult and scary. But keeping them bottled inside, I have learned can be just as damaging. Choosing to acknowledge such feelings, no longer gives them the power, and allows me to unshackle myself from its lies.

From Shame to Self-Compassion

Perhaps my ‘Word of the Year’ therefore should be self-compassion. To reject the idea of self-blame, and instead to treat me with the same kind and non-judgemental manner that I would treat someone I loved.  

In the end, we are the ones that need to validate our symptoms, listen to our bodies and take appropriate action on its behalf. To be our advocate and champion, and to realise that we are of better service to everyone else when not driven by shame, but self-compassion.

It’s challenging enough to meet the daily battles that accompany life with chronic illness without also internalising the lies that shame continuously whispers.

"It's challenging enough to meet the daily battles that accompany life with chronic illness without also internalising the lies that shame continuously whispers." Share on X

The truth that despite chronic illness making us feel weak, and ‘less than’ we are in fact, incredibly strong and resilient. We achieve incredible feats every day just by being able to get out of bed.

Every day we learn essential lessons in gratitude and grace.  And even though the conditions that afflict us, from which we cannot escape, it does not have to define everything we are. It does not have to determine everything we do or the relationships with those in our inner circle.

by
Keep Reading
New Year, New Beginnings, But Still Sick
In Chronic Illness

New Year, New Beginnings, But Still Sick

13 Comments

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. For January 2020, I will use the prompts to discuss the promise of a new year and new beginnings from the perspective of being still sick.

As I sit here, only a couple of hours before the beginning of 2020; a brand new year, hell, even a brand I am reflecting on the concept of New Years and new beginnings.

Purging The Old, To Make Way With The New

Often, the celebration of New Years and the promise of such beginnings encourages a purge.

The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don’t need, or the negative thoughts or bad habits in our lives.

"The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don't need, or the negative thoughts or bad habits in our lives." Share on X

When living with chronic illness, we do so wish that we could purge this particular set of baggage. And why wouldn’t we? The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives. Illness controls how we feel to what the day ahead of us will resemble, and so much more besides.

"The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives." Share on X

When I look back to my life during 2019, I am unable to find accomplishments or stand out moments. There are no moments that I am proud of, and if asked, I would be hard-pressed to find a highlight of the year. This year has had, unfortunately, a lot more downs than ups.

On reflection, this year has seen further deteriorations in the symptoms that accompany life with FND. The year has seen an increase in the number of falls and its ensuing bruises. And more incidents of being left embarrassed after my legs have given way which has left me lying in a heap on the fall.

So yes, if I could purge the afflictions created by FND and the effects of chronic pain, then I would do so in a heartbeat. To be able to wipe the slate clean, and start an entirely brand new book as we embark on a brand new year.

Seized By Fear Anxiety and Loss of Confidence Because of Chronic Illness

I wish I could grab the opportunities and excitement that presents itself at the beginning of this brand new year. However, recently life has been seized by fear, anxiety and loss of confidence. All are culminating from an increase in the severity of the symptoms due to FND. The loss of confidence has been quite profound during recent weeks and months, as the realisation of the unpredictability of my body has become more pronounced.

"Often when living with the effects of chronic illness and its debilitating symptoms, we can be seized by fear, anxiety and a loss of confidence." Share on X
black and white photo of woman staring out of a window
Living with a chronic illness can result in being seized by fear, anger, anxiety, and loss of confidence, and so much more.

Leaving the house to even go to the most familiar places start to provoke fear and dread; never knowing when your body next is going to fail you – the worry of falling or becoming non-functional when alone, or in an unfamiliar environment.

It’s a hard and miserable way to live. It slowly becomes a life of existing and surviving rather than living. And it’s not a direction I want my life to continue.

New Year, New Perspective?

Amid a new year, and of new beginnings also provides the opportunity for opening the mind to new ways of thinking.

To make a change, I need to change the mantra ‘new year, new me’ to ‘new year, new perspective.’

Yes, last year was complicated and full of challenges and setbacks, but I survived. It may not have always seemed like it, but I got through it.

"Yes, last year was complicated and full of challenges and setbacks, but we survived. It may not have always seemed like it, but we got through it." Share on X

And to appreciate and celebrate those little achievements in the face of such challenges and setbacks. To regard these small accomplishments as small steps toward achieving bigger goals.

A journey of a thousand miles begins with a single step - Confucius

When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time, often extremely tentatively as we wait for the moment our bodies will fail.

"When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time." Share on X

Instead of looking ahead to the next goal, or the next step, there is a need to be present. To learn to enjoy each moment, even among those quiet and banal moments in each day.

To start anew and revamp my mindset, I need to recognise and acknowledge the limitations that are a part of life with chronic illness. And the awareness that the illness may stop me from doing the things that I want in this life. The knowledge that I will experience the frustration, anxiety, anger and fear that comes from living with FND.

But I don’t have to let these limitations drive the next year, the next decade or the rest of my life. I can decide to do the things that I want, but doing it differently to accommodate the limitations imposed by FND.

"We can acknowledge the limitations caused by chronic illness, but it doesn't mean that we have to let them drive the next year. We can do the things we want, but just differently." Share on X

Envisioning The Possibilities

When living with chronic illness, it is accompanied by the many limitations that follow. But that doesn’t mean we have to stop making room for the possibilities of the future. Instead, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us.

"To survive and thrive, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us." Share on X
To live and thrive despite living with a life-changing diagnosis, we must envision the future and its numerous possibilities. To hope that there will be plenty of good amongst the many challenges and setbacks.

And so to survive life with a chronic illness, envisioning hope, and the possibility of pleasant surprises ahead is critical.

Here’s to a fresh new year, and a new decade.

Here is hoping that 2020 is kinder to us all.

New Year, New Beginnings, But Still Sick
January Link-Up Party with A Chronic Voice
by
Keep Reading
In Chronic Illness

The Before and Afters Of Chronic Illness

6 Comments

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.

When living with a chronic illness we, unfortunately, don’t have a godmother to allow us to go to the ball!

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
by
Keep Reading
In Chronic Illness

A Chronic Life: The Grief of FOMO & FOGO

3 Comments

The Rise of FOMO Due To The Social Media Crazed World

In this social media crazed world we live in has borne FOMO, the “fear of missing out.”

FOMO, fear of missing out.

An anxiety-inducing feeling of being left out of something everybody else is doing, or knows about, or owns. It’s the pressure of never wanting to turn your phone off in case of a missed notification or refusing to turn down an invite to a party in case of losing your social standing. And a want to do everything at once to feel included.

"FOMO is the pressure of never wanting to turn your phone off in case of a missed notification or refusing to turn down an invite to a party in case of losing your social standing. A want to do everything to feel included." Share on X

And the feeling of FOMO is intensified as we bear witness of friends, family and acquaintances having a brilliant time via social media.

The Fear of Missing Out Becomes A Way of Life When Living With Chronic Illness

Living with a chronic illness often hinders you from going out, forced to stay inside and observe the fun of the outside world from our screens. As such, FOMO is not just a feeling but becomes a way of life.

There isn’t anybody that would wish to miss out on experiencing the joy of being part of celebrations in the lives of friends or family. Nobody wants to feel left out or feeling they are experiencing life behind a screen. We want to be experiencing life, instead of merely being a bystander to everything it has to offer.

"Living with a chronic illness often hinders you from going out, forced to stay inside and observe the fun of the outside world from our screens. As such, FOMO is not just a feeling but becomes a way of life." Share on X

But when living with a chronic illness, and the unpredictability that it brings, missing out becomes another new reality. The existence of FOMO and its presence in this new life is something else we must grieve and learn to accept.

Social Media although connects us with others all over the world, can cause FOMO as we see evidence of the fun that everyone else is seemingly having in our absence.
Social Media connects us with others all over the world, but can often make us realise that our world has become so much smaller because of chronic illness

Staying in the confines of our home becomes a necessity, not a choice. There is no real choice as debilitating, and relenting symptoms continue to ravage the body. Symptoms so out of control that the prospect of going out feels like an impossible challenge. So, staying in, it becomes; forced to become a spectator of missed fun as we scroll through our social media feeds.

"Symptoms often become so out of control that the prospect of going out feels like an impossible challenge. So, staying in, it becomes; forced to become a spectator of missed fun as we scroll through our social media feeds." Share on X

But perhaps FOMO is inadequate to describe the depths of feelings it provokes in those living with chronic illness. It’s not fear, but feelings of sadness, angst, regret and anger at chronic illness for it taking so many things from you, lost forever.

The Guilt of FOMO

If the sadness and disappointment that FOMO creates aren’t enough to contend with, unfortunately, it is also accompanied by guilt. The guilt for bot being able to make it to a friend’s birthday celebration, or a wedding. Guilt, for not only not attending, but also knowing the disappointment felt by those whose celebrations we are missing.

As we sit at home, missing out, we torture ourselves, thinking that if only we pushed ourselves a little more, we could have gone. The reality is, however, is if we had pushed ourselves, it would only result in exacerbating symptoms, making the situation worse. The truth is, we are forced to miss out on things because we are not well.

"Pushing ourselves to attend events although will oust the guilt of not going, often results in exacerbating symptoms and make us feel even worse. The truth is, we are forced to miss out on things because we are not well." Share on X

FOMO shines a mirror on our old life, the normal that used to be our reality. And it reminds us that chronic illness and our fragile bodies have decimated normal, emphasising this new reality and our new life of missing out.

Chronic Illness Inconveniences, and Not Only For The Person Living With It

As this new reality continues, symptoms persisting and enduring further FOMO, a new consequence of always cancelling and missing out becomes evident.

If unable to attend events and celebrations, and forced to cancel at the last minute again and again, then consequently people will stop inviting you to stuff.

Chronic illness and everything that it brings and takes away is an inconvenience and not just for the person living it. And so, whether to make it easier for them or us, invitations are no longer given. It hurts being seemingly cut out of the lives of those we care about, with no regard to our feelings.

From FOMO To FOGO

Ironically, another consequence of FOMO is the development of FOGO. What is FOGO, I hear you ask? It’s the Fear of Going Out. After cancelling and not being able to make events, a fear of making plans and going out evolves. Furthermore, after spending so much time indoors, in the comfort and safety of home, it can be anxiety-provoking when venturing outside again.

There is an anticipation that a flare-up of symptoms will result in the cancellation of plans of going out. The mere thought of going out starts to become unobtainable. And in the unlikely event going out is an option, a fear of becoming ill comes into existence. It is preempting a flare of symptoms before it’s even become a reality.

"In the unlikely event going out is an option, a fear of becoming ill comes into existence. It is preempting a flare of symptoms before it's even become a reality." Share on X

The fear of going out, however, does not equate to me not going out when symptoms allow me. The reality of living with a chronic illness often leads to overanalysing and questioning every decision made. A worry exists that the very act of going out will lead or exacerbate symptoms.

Feeling Unsafe; a Prisoner In An Unpredictable Body

FOGO develops as a result of a loss of self-confidence. The neurological condition I live with recently has recently caused weakness, debilitating trembling in the legs, and falls. In recent weeks, I have regularly been finding myself on the floor, as legs give way with no warning. Such symptoms have made me feel unsafe and afraid of my own body. And no longer confident in my body’s ability to keep me safe and free from harm.

"Debilitating and unrelenting symptoms have made me feel unsafe and afraid of my own body. And no longer confident in my body's ability to keep me safe and free from harm." Share on X

Continually living with severely trembling legs, acutely aware of the unpredictability of such symptoms. Recognising that at any moment they could suddenly stop working and collapse causes anxiety, especially when it involves leaving home and the safety of our comfort zone.

Falling over hurts, no matter how many times you have experienced it, it still hurts. And falling over in public can be even worse, especially with the feel of eyes of people staring. The awareness of that it could happen when we next go out, unable to stop it, it can often be easier not to go out at all.

"Falling over hurts, no matter how many times you have experienced it, it still hurts. And falling over in public can be even worse, especially with the feel of eyes of people staring." Share on X

Chronic Illness Creates Fear and a Fear of Going Out

Living with a neurological condition and such unpredictable symptoms create fear of the unknown as well as what could happen. A knowledge exists that the ‘what could happen’ is very likely to happen again, but not when can frighten.

All the accompanying symptoms of FND make me fear my own body, waiting with bated breath for the next fall or accident. We live inside unpredictable bodies that don’t work as they should – trapped inside a body that keeps us from living. And the worst thing is there is no escape – no relaxing holidays from the debilitating symptoms that suddenly pop-up every day. Sometimes there’s even no cures for them, or little in the way of effective treatments. And we become scared; scared of getting worse and becoming sicker and frailer. We don’t feel safe.

It creates fear and a fear of going out.

"We live inside unpredictable bodies that don’t work as they should – trapped inside a body that keeps us from living. And the worst thing is there is no escape. It creates fear and a fear of going out." Share on X
A Chronic Life: The Grief of FOMO & FOGO When chronic illness creates the 'fear of missing out' and the 'fear of going out'
by
Keep Reading
Pin It