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Identity Crisis: Am I Defined By Chronic Illness?

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The Identity Crisis: Am I Defined By Chronic Illness?

Often chronic illness sneaks into your life, like a thief in the night. It takes everything that once defined us; stealing our identity and imagined futures. For those, like me who have suffered from symptoms associated with illness for most of their life, it is hard not to think of the person I might have been if FND had not become a permanent and prominent part of my life.

When living with a chronic illness; continually feeling the effects of can often makes us wonder “Who am I?”

When living with a chronic illness, we are often told not to let it define us. Advice that may seem constructive and wise, but which often feels that it woefully disregards our experiences of living with a chronic condition.

The Truth Is That Sometimes Chronic Illness Does Define You

Why? Because the truth is, that if living with a chronic illness, then it might define you, becoming an important part of your identity. How can it not when such relentless and disabling symptoms often prevent you from living a ‘normal’ life. Illness and all of its accompanying baggage is not just a small detail of our life story. It becomes a crucial aspect of life.

"The truth is, that if living with a chronic illness, then it might define you. How can it not when such relentless and disabling symptoms often prevent you from living a 'normal' life." Share on X

It seems that illness is nevermore a defining, part of our lives when the symptoms are at their worst. When severe and disabling symptoms surrenders you bedbound, and which everything feels like a monumental struggle. It is during these times when everything that defined us, such as the activities we enjoyed, or the hobbies that meant so much are forgotten and discarded as debilitating symptoms leave us unable to achieve, well anything.

Becoming Lost Within Chronic Illness Itself

These weeks and months of becoming disabled by such severe symptoms, it can be easy to become lost within chronic illness itself and begin to see that it is all we are. And so becomes a wave of grief and loss. The loss of yourself.  The loss of that which defines you, as well, you.  And the loss of the ability to do those things which make you, you.

Silhouette of woman in dark
During the worst times when living with chronic illness, it can be easy to become lost within it and to begin to see that is all we are. Photo by Kevin Jesus Horacio on Unsplash.
"It can be easy to become lost within chronic illness itself and begin to see that it is all we are. And so becomes a wave of grief and loss. The loss of yourself.  The loss of that which defines you, as well, you." Share on X

Often, you find yourself no longer being able to do things you once were able to do. Or no longer have the same opportunities as before illness crept it’s way into your life. Suddenly becoming ill, or the sudden deterioration of symptoms can often feel that the person we once were replaced by a weaker and frailer version of ourselves. We no longer feel like the same person we used to be. And so we begin to grieve for that old version of us.

The severity and intensity of illness and subsequently becoming incapacitated, life and we slowly become defined by what’s wrong.

When living with constant and relentless symptoms, it can often feel that life and ourselves become defined by what’s wrong. The quote is taken from the blog post ‘Chronic Illness: A Harbinger of Shame & Guilt‘

But Chronic Illness Should Not Be The Defining Factor of Your Life

That said, however, chronic illness should not become the defining factor of your identity. Chronic illness and all its baggage is not the only part of you and is not the most crucial part.

"Chronic illness should not become the defining factor of your identity.  It is not the only part of you and is certainly not the most crucial part." Share on X

When diagnosed with a chronic illness, our old identity does not become suddenly erased, nor does a diagnosis become a replacement for our name. Nor does it have to be the first thing you broadcast when being introduced to people. I have since learned the importance of being able to talk about other things apart from your diagnosis. And being able to recognise your own identity beyond that of ‘patient.’

"I have since learned the importance of being able to talk about other things apart from your diagnosis. And being able to recognise your own identity beyond that of 'patient.'" Share on X

So Am I, Or Am I Not My Illness

So, am I, or am I not my illness? Maybe. Maybe not. Indeed, my ongoing struggles as a result of FND is a constant reminder that it is a massive piece of who I am. The continued severe and debilitating symptoms that affect every aspect of my life reminds me of its dominance; stressing that it and its symptoms are often stronger than I am.

I am not the same girl I was before I got sick. Or at least before the symptoms worsened and becoming a very significant part of my everyday life. Sure, I’m still mostly “me” but a different version of who I was before FND impeded my entire life.

"Sure, I'm still mostly "me" but a different version of who I was before FND impeded my entire life." Share on X

Certain qualities become amplified, priorities become reorganised. And how we see the world becomes viewed through a different set of lenses. But illness not only changes who we are as a person but also how we live. Every choice we now make defined by chronic disease and disability.

Redefining Yourself Through Illness and Disability

But although illness starts to define you, and the choices forced upon you with regards to your illness or disability, it is also through them that you can begin to redefine yourself.

We make the most of the times we are feeling relatively well by taking part in activities and interests that distracts us from the pain and other symptoms of chronic illness. Those that help give us an identity beyond that of a patient, or someone as being chronically ill.

Woman taking photograph
But illness and disability do not have to define us; it can be a stepping stone to help redefine us.

Being ill has also redefined the way I look at how I take advantage of what is out there in the world beyond my comfort zone. Due to my condition, and how it affects me, I have become limited to places in the world I can travel, and also the method of transport I can use. But I still go when I am able and have since found a love of cruising, which I may not have found if I was not sick and limited by FND.

How Illness Has Made Me, Me

I would argue that having to live with illness has made me much more emphatic and compassionate. That is not to say those who aren’t living with illness or disabilities cannot be those things, but I know what it feels like to experience struggles and adversities through my personal experiences of being sick.

The experiences I have accrued since living with the permanent effects of living with a neurological disorder has made me a stronger person. Being in constant pain, forced to continually adapt as it refuses to work the way I want it to have made me learn to fight in ways I would never have had if I weren’t ill. It has made me more determined to weather the painful and challenging moments to achieve what I want to do or go to places that make me feel uncomfortable due to unpleasant symptoms associated with FND.

"Being in constant pain, forced to continually adapt as it refuses to work the way I want it to have made me learn to fight in ways I would never have had if I weren't ill." Share on X

I am not my illness. But my illness is a part of me.

I am not my illness. But my illness is a part of me

I have since concluded that I am not my illness. But my condition is a part of me. And a part of me that has shaped me into the person that stands before you today. Certainly, a life without FND and all the baggage that accompanies such a condition means I would have led a very different life without it.

I am never going to experience what it is to be a fully functioning, ‘normal’ human being. Still, the experiences gained from living with chronic illness has helped redefine me, and not always negatively.

It has helped make me, me.

"I am not my illness. But my illness is a part of me. The experiences gained from living with chronic illness has helped redefine me, and not always negatively. It has helped make me, me." Share on X
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In Chronic Illness

Chronic Illness: A Harbinger of Shame & Guilt

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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.

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New Year, New Beginnings, But Still Sick
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New Year, New Beginnings, But Still Sick

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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
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Top 10 Blog Posts of 2019
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Insights of Life With FND: Top 10 Blog Posts

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2019 has proved to have more ups and downs than a rollercoaster at a theme park. There have been good times and bad times. A year of uncertainty and frustrations. And plenty of times when the symptoms that accompany life with FND has gotten the upper hand and leading to a loss of confidence and anxiety regarding the future.

Much of this has been documented in the posts that I have published in 2019. So rather than documenting the past 12 months in a blog post, I would like to end the year with a round-up of the most popular posts that I have published this year.

Click on the images to read the entire post.

10 Things I’m Afraid of Due to FND

“When living with a neurological disorder like FND can be frightening and overwhelming. Unfortunately, the fear and anxiety of living with such conditions are permanent; not only for one night of the year like Halloween. Fear and anxiety yet another symptom of living with a chronic illness and ones which we don’t enjoy.

This post is about airing my neurosis that FND has created in my own life.  If you don’t have FND, consider this a small insight into the day-to-day drama of living and coping with a neurological disorder.”

‘A Day in the Life’ With FND

“

Many people assume that every day is the same when living with pain and illness. That our abilities and limitations are stable, remaining the same day in and day out. However, pain and other symptoms that accompany chronic illness fluctuate. 

Some days I may only experience one or two symptoms of FND. On other days I may complete the whole set. Life with FND or any chronic illness is like opening a box of chocolates every day; you never know what you are going to get or what is in store for the day. It’s an unpredictable and uncertain life.”

Seeking Joy In The Midst of Chronic Pain

Seeking Joy In The Midst of Chronic Pain

“

If I were asked to sum up my current life in just one word, then there is only one word I could conjure which would adequately describe it. Pain.

From the moment I wake up, and until I (finally) fall asleep, all I can feel is the pain that assaults my body. The pain has become the bookends of my days. My entire life and existence becoming defined by its tight grip. It is all-encompassing. There are no aspects of life that the pain leaves untouched. And it’s become the strongest voice in my life.”

Chronic Illness and Its Graveyard of Buried Hopes

“Hope no longer brings the promise of sunshine and rainbows. Instead, when our hopes and expectations become defeated by illness, we are left with the bitter taste of disappointment. As the number of losses increases and the list of what we can no longer do becomes longer, hope becomes further out of our grasp.

Hope creates incredibly cruel disappointment in the life of someone living with a chronic illness. Hoping that chronic illness will disappear begins a cycle of grief when year after year, its symptoms are still residing in our lives and with no intention of absconding.

While plagued with debilitating and unrelenting symptoms; symptoms that have such a profound negative impact on our quality of life sparks the hope that these symptoms will end. A desire for the end of the distressing and merciless symptoms and the expiration date handed to the current flare. But when upon waking and instantly met with the same crippling symptoms, the flame of hope extinguishes once more.”

Hiding Behind a Mask

“The make-up I apply allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can pretend that I am well. A persona whereby I can inhabit a world of being well. A world in which I am not in constant pain.

But we don’t put on a mask purely for vanity reasons. We also assume a different persona in consideration for those around us. We put on a brave face, hiding pain and the effects of other symptoms to alleviate the worry and burden on those closest to us. When out in the world, conversing with those we don’t know or don’t know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike.”

In The Mirror: Body Image and Chronic Illness

“When diagnosed with a chronic illness, the insecurities concerning body image grow exponentially then we could ever think possible. We develop more of a hate relationship with our bodies, stronger and unyielding to change than ever before. When living with a chronic illness we experience pain, discomfort, and loss of control. All of which also can lead to a change in physical appearance. And which can have a detrimental effect on self-esteem and how we feel about our bodies.

It is hard to love or feel positive about a body that seemingly no longer listens to my signals. A body that is continuously taunting me, letting me know of its dominance with its unpredictability. One which I do not know what it is going to do from one moment to the next. A body which I should have the utmost trust in, but only reminds me that it plays by its own rules. A game that I appear to have no control in, and which the symptoms have the upper hand. It continually likes to keep me on-and-off my toes, both figuratively and literally! As I make plans and wanting my body to help me fulfil those plans, my body, however, often have other aims, having a mind of its own.”

Blooming Despite Adversity

“Everyone lives with insecurities. But, when living with a chronic illness, these insecurities grow exponentially. We feel sick the majority of the time which strips our self-confidence and sense of self-worth away. The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent.

What we forget, however, is the number of times we have gotten back up after being knocked down by illness. We get knocked down, time and time again, but still, we rise. And when we are back on our feet, although it may not seem like it, we are stronger and more resilient than before. We begin to thrive and bloom when pushing past our demons, accomplishing things we may have never thought possible. However, despite all this, still radiating positivity and happiness despite the harsh conditions of living with a chronic illness.”

Uncertainty of Living With Chronic Illness

“We all, to some extent, live with uncertainty. None of us knows what the future holds, and it can be exciting living life with a degree of spontaneity. When living with a chronic illness, and chronic pain, living with such uncertainty can be anything but thrilling.

We may not know when symptoms are going to return, but the only thing that we can be sure about is that they will return. 

Living with uncertainty feels like being trapped in an endless cycle of pain and fatigue and other troublesome symptoms. There are some periods of respite in between, although they never seem long enough. And just as we are enjoying this quiet moment of pause, the symptoms repeating. There is a constant repetition of symptoms.”

Finding Beauty In Life With Chronic Illness

Finding Beauty in Life With A Chronic Illness

“When first diagnosed with a chronic illness, we hope that it will go away. That one day we will wake from a deep sleep, and everything will go back to what it once was. 

When we realise and accept that this is merely a pipe dream. And after we had made necessary adjustments to find a place for our new diagnosis, hope evolves into something else.

Although we know a cure is never going to materialise, that we will never get better we never stop hoping nevertheless. We hope that there will be improvements, a hope that life will get better regardless of the permanency of illness.”

What You Don’t See About Living With FND

what you don't see about living with FND cover

“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 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.”

So, that was the top 10 posts from 2019!

I would like to thank you all for your continued support throughout the year. Let’s hope that 2020 brings you all improved health, happiness and a prosperous and successful future. And I look forward to seeing what the new year will bring, and what is in store for the next decade!

Which post was tour favourite? Are there any topics that I haven’t covered and would like to see on the blog?

Happy New Year All!

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A Christmas Wish List of a Chronically Ill Girl
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A Christmas Wish-List of A Chronically Ill Girl

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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. In keeping with the festive season, December’s post will be about what I would like for Christmas as someone living with a chronic illness.

Ah, the festive season is finally among us. I am sure everyone is busy getting everything ready before the arrival of Christmas Day. The shops are bustling as we search for that perfect present that exquisitely reflects those crucial people in our lives.

Also, it is the time of year when we note everything that we would like to receive from those closest to us. Those material items that we most sought after, in the hopes that they will somehow improve our lives. But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions.

"But when living with a chronic illness, like I am, we begin to understand what matters most in life. And begin to appreciate the triviality and fickleness of such material possessions." Share on X

The truth is, that if we could swap all those Christmas presents that are wrapped under the tree in exchange for everything that chronic illness has taken away, then we would do so in a heartbeat. The most welcome presents being those which cannot be wrapped and placed under the Christmas tree.

Christmas baubles on Christmas tree with presents underneath
Often when living with a chronic illness, what we most want in the world cannot be wrapped and placed underneath a Christmas tree. Photo by Oleg Magni from Pexels

If such a person, like Father Christmas, actually existed then surely the most considerable request on our wish-list would be the restoration of our health and everything else it has taken with it.

"The truth is, that if we could swap all those presents wrapped under the Christmas tree for everything that chronic illness has taken away, then we would do so in a heartbeat." Share on X

Living with the neurological disorder, FND has taken so much away from me. If such wishes were granted these are what I would wish for Christmas:

For Christmas, I Would Like Confidence

A loss of self-confidence is one of many hallmarks of living with a chronic illness. The persistent and debilitating symptoms are beginning to erode our already fragile confidence.

So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies. And as a result, we begin to establish a comfort zone, very often our homes – a place where we feel safe and secure despite the extremely debilitating symptoms.

A loss of self-confidence is one of many hallmarks of living with a chronic illness. And in its place is fear and anxiety, especially everything that is outside of our comfort zone.

Going beyond our established comfort zone, therefore, evokes fear and anxiety. And there is nothing more that evokes fear and anxiety than travelling.

"So occurs, a loss of confidence in every facet of our life; from going out, making everyday decisions and most of all, trusting ourselves and our frail bodies." Share on X

Although travelling induces excitement for many, for those of us living with chronic illness, it can have the opposite effect. For nothing, makes us go out of our comfort zones quite like travelling.

Being away from the familiar and the coping strategies that help us get through the difficult days can be scary. When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry.

"When once we could travel with confidence, doing so after a diagnosis of a chronic illness now only provokes apprehension and worry." Share on X

Travelling hasn’t been on the cards this year, but a trip away is forthcoming for next October. At the time of booking, there was excitement and anticipation. But as I have been experiencing worsening symptoms as of late, my confidence has plummeted. As a result, the thought of travelling and being away from my comfort zone fills me with dread and anxiety.

So, if it were so possible, I would wish for confidence for Christmas. Confidence and self-belief to help with travelling alongside the symptoms and consequences FND bestow upon me.

All I Want For Christmas Is Meaningful and Lasting Friendships

For me, the best part of Christmas is spending time with loved ones. And even better is the time spent visiting, spending time with and bonding with members of the family whom we may not get to see during the rest of the year.

black and white photo of woman staring out of a window
Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

It means so much to me as someone living with a chronic illness, loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone.

"Loneliness and isolation have become part of my life as much as the condition has. As a result, much of the time is spent inside the same four walls, day in and day out, and often alone." Share on X

One Christmas wish, therefore, would be to find deep and meaningful friendships with people I can be myself with, without judgement. To spend time with like-minded people, and bonding over shared interests.

All I Want For Christmas Is Warmth!

This morning as the cold and rain hit me as I stepped outside, oh how I wished for warmth.

Woman wearing white long-sleeved jumper holding hands out towards fire
Oh, how the cold and wet weather makes me wish for warmth, especially as it can often exacerbate already debilitating symptoms.

The Winter months, with its searing cold temperatures and lashings of heavy rain, can be difficult for this living with chronic illness and chronic pain. Why? Because such conditions increase the severity of many symptoms associated with chronic illness, and especially that of chronic pain.

And now as the freezing temperatures and icy cold rain has seeped right into my bones, I long and wish for warmth!

All I Want Is To Be Able to Cope

Recently has been a tumultuous time in regards to my health and life alongside FND. Everything has and feels like a struggle. Life lately has felt like it has been about merely surviving instead of living. But I don’t want my life to be like this. I want to live and to thrive.

Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave. For often, the coping strategies that once worked, for some unknown reason no longer do and my already weak legs are scrambling underneath the deep water in a bid to keep me afloat.

"Oh, how I wish that there was a manual for living with this condition. A guidebook for tried and tested coping strategies for living with this condition which stubbornly refuses to leave." Share on X

To help keep me afloat instead of sinking below into the depths of despair and continued suffering. My wish for Christmas would, therefore, be appropriate coping strategies, those that work and will help to live and not just survive.

And Most of All I Want Is an Ending

Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives. The eradication of every symptom that accompanies it, having a profound effect on every facet of our lives.

"Most of all, if we were all honest, the biggest Christmas wish of all would be the ending of the illnesses that continually impinges on our lives." Share on X

Unfortunately, however, life isn’t a Disney movie, and life rarely offers a happily ever after. There are no fairy godmothers or those with magical powers that can grant us this one wish.

I suppose, therefore, it is up to us, to find ways to live our lives in harmony with chronic illness. To discover effective coping strategies for ourselves and that help us to live and endure everything that pain and illness throw at us every day. And especially it is up to us to write our own story and to make our own ending.

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