functional neurological disorder Archives

In Chronic Illness

Toxic Positivity: Positivity Is Not A Magical Cure

December 8, 2020 6 Comments

It can be challenging and scary to acknowledge and profess your vulnerability for all the world to see. Recently, I did just this, chronicling the worsening of my symptom of FND, and the impact that it has had on my mental health. I received many messages of support, especially from those within the chronic illness community. But, I also received comments such as “don’t worry so much, you’ll get through it,” “stay positive, it will soon pass“, and the cliched “get better soon.” While many see these as supportive and well-meaning messages of support, for those who are chronically ill, they are examples of toxic positivity.

What is Toxic Positivity?

But what it is toxic positivity? Toxic positivity describes the concept of being positive and only being positive while rejecting everything negative. It is a culture which prescribes feeling or acting happy and cheerful even if not the truth.

"Toxic positivity describes the concept of being positive and only being positive while rejecting everything negative. It is a culture which prescribes feeling or acting happy and cheerful even if not the truth." Share on X

The Idea That Positivity Is A Magical Cure Is Itself Toxic

For those living with chronic illness, positivity has become regarded as a Fairy Godmother like presence. That by merely being positive and happy, we can magically cure ourselves of our sickness. And positivity alone can wondrously compel symptoms to disappear. Or worse, that surrendering to dark, gloomy thoughts is a sign of wanting to be ill.

"For those living with chronic illness, positivity has become regarded as a Fairy Godmother like presence. That by merely being positive and happy, we can magically cure ourselves of our sickness." Share on X

Of course, I would love for my Fairy Godmother to exist and cast away the debilitating symptoms that have wreaked havoc upon my body and life. But they do not exist, and I am never going to get better. I would love to get better. But sadly it’s unlikely ever to happen. It isn’t pessimism or negativity; it’s reality.

That does not mean; however, I oppose the idea of positivity. In my sanctuary, I have surrounded myself with positive and uplifting quotes printed on greeting cards and postcards. Or even ceramic decorative objects adorned with an inspirational quote or affirmation. On my Twitter and Instagram accounts, I often like to share inspirational and motivational quotes when they resonate. I love, therefore to surround myself and operate in positivity whenever I can.

The positivity that I choose to exude, however, is not to deny or avoid my problems but to make them more tolerable. For the truth is, that no matter how positive and exuberant I am, it is not a magical cure for my affliction. Still, I am sick.

"The positivity that I choose to exude, however, is not to deny or avoid my problems but to make them more tolerable. For the truth is, that no matter how positive and exuberant I am, it is not a magical cure. Still, I am sick." Share on X

Positive, Yes, But Still Sick

No matter how cheerful or optimistic I feel, the pain is always present. Regardless of how buoyant I may be the trembling and weakness is still severe and debilitating. Despite feeling on cloud nine, the dizziness never dissipates. Becoming a Pollyanna isn’t going to fix my broken brain. I cannot think or will myself to be and feel well; I am unable to control the symptoms that accompany FND; it just is.

"Becoming a Pollyanna isn't going to fix my broken brain. I cannot think or will myself to be and feel well; I am unable to control the symptoms that accompany FND; it just is." Share on X

No matter how positive and cheerful we may be in our lives with chronic illness, still, we are sick. Photo by **Blu Byrd** from **Pexel**.

But the truth is that the ray of sunshine that positivity provides transforms into dark clouds caused by such persistent and debilitating symptoms. In reality, it is exceptionally challenging to cultivate positivity whilst in the throes of agonising pain; the type of agony that medications cannot subdue. It is hard to maintain positiveness when the world will not stop spinning; or when left bruised and injured after yet another fall. Being peppy and animated cannot suddenly compel my legs to stop trembling or make them any more robust. A smile and positivity cannot always meet the rigorous demands of life with a chronic illness. And on the worst of days, I do not possess the ability to adorn a happy face or gloss over the struggles that I continually face.

"A smile and positivity cannot always meet the rigorous demands of life with a chronic illness. And on the worst of days, I do not possess the ability to adorn a happy face or gloss over the struggles that I continually face." Share on X

When I am experiencing a significant flare, I only possess enough energy to survive each day that it lasts. I am unable to find the strength to search for the ray of light that positivity radiates. And I feel every emotion under the sun bar the happy and positive ones. Instead, I am alone and isolated with only pain and suffering for company.

If Not Positive All The Time, Am I To Blame For My Continued Sickness?

And this loneliness and isolation are magnified when scrawling through social media only to be met with memes about the power of positive thinking or inspirational quotes. Such posts, and those who post them make me worry about expressing the reality of my feelings for fear of being judged or harassed for not being positive enough.

I am grappling not only with the disabling symptoms of a neurological disorder but also the guilt and shame that somehow I am the cause of my continued ill-health. If recovery is dependent on what you believe, or how hard you fight, then the failure to do so becomes just that – a failing.

"If recovery is dependent on what you believe, or how hard you fight, then the failure to do so becomes just that – a failing." Share on X

After internalising the power of positivity for many years, I question whether I brought FND on myself. If only I meditated more or were more positive, would I be fully recovered, and not crying in agony? As such thoughts run through my head, it is easy to experience shame and feelings of incompetency at the idea that I have not tried hard enough to be positive.

Being sent positive and inspirational quotes such as the one above only make us question whether our negative thoughts and feelings are the reason we are still sick. Photo by **Binti Malu** from **Pexels**

It does not help me feel any better or more positive when sent cliched inspirational and positive memes of quotes. The words do not cure or even alleviate tormenting symptoms. Instead, it puts relentless pressure to be positive and cheerful, and feelings of inadequacy when failing to do so.

"It does not help me feel more positive when sent cliched inspirational quotes. The words do not cure tormenting symptoms. Instead, it puts relentless pressure to be positive and feelings of inadequacy when failing to do so." Share on X

But I Have Learnt That My Thoughts Do Not Influence How I Feel

At the coal face of living with chronic illness, I have learnt to accept the reality of it. Every day, I face the symptoms. Some days are good, while others are bad, but my thoughts or feelings fail to influence the kind of day I am going to experience. Even if I could suppress the negative thoughts and feelings that arise from the challenges of living with a chronic illness, they would still exist, however. When struggling, I do not want force-feeding positive and inspirational messages, but for my feelings to be heard, accepted and validated.

"I have learnt to accept the reality of it. Every day, I face the symptoms. Some days are good, while others are bad, but my thoughts or feelings fail to influence the kind of day I am going to experience." Share on X

Living with a chronic illness is demanding and challenging. A terrible thing is happening to us, so are we not allowed to feel negative about it?

Yes, positivity can make the experience easier to bear, but it is no magical cure.

But, by making it out that it is, is what turns positivity toxic.

"Yes, positivity can make the experience of living with a chronic illness easier to bear, but it is no magical cure. But by making it out that it is, is what turns positivity toxic." Share on X

In Chronic Illness

Chronic Illness: A Battle of Mental Health

October 28, 2020 4 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. As World Mental Health Day fell in October, I decided to use the prompts to discuss chronic illness and mental health.

Chronic Illness: Directing a Battle Concerning Our Mental Health

In my last blog post, I recited a famous quote from the Shakespeare play, As You Like It. All the world’s a stage, And all the men and women merely players.” But if I indeed am the player or actor than what role would chronic illness assume?

After much thought, I concluded that chronic illness surely would assume the position of a director. A director, the person in charge and assumes all responsibility for every facet of a film or stage production. It can feel like chronic illness plays a similar role in the lives of those forced to live with it.

When living with a chronic illness it not only has a significant impact upon your physical health, but has one on your mental health also. Image by Wokandapix from Pixabay.

For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed. It often drastically limits what we can do, and brings a whole lot of uncertainty to everyday life. And it has complete control over where and when the symptoms that accompany it will strike.

"For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed." Share on X

But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health.

"But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health." Share on X

Acquiring Not Only Physical Symptoms But Symptoms Associated with Mental Health Also

Once again overwhelmed by severe and debilitating symptoms, it feels that FND is once again directing over my entire life. Trembling and weakness, particularly in my legs, have become incredibly tenacious, and the pain associated with it especially incessant. It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms such as this.

"It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms." Share on X

As my legs continue to buckle when trying to stand, I can only lie down and surrender to the torment such symptoms have on my life. It is a constant reminder that I no longer have control over my illness. It’s accompanying symptoms once again prove that they play by their own rules. As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before.

It is easy to fall into despair and hopelessness, even depression when experiencing a surge of unrelenting and debilitating symptoms—photo by Yuris Alhumaydy on Unsplash.

"As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before." Share on X

The Grief and Burden of Being Chronically Ill; Leading to Feelings of Anxiety and Depression

As the hatred and distrust of my body continue to grow, it slowly develops toward hatred of myself also. Severely limited by the symptoms that continually plague me, I begin to feel useless. Weak. Worthless. A burden. The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear. Once again, the grief of being chronically sick overwhelming both my body and mind.

"The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear." Share on X

Anxiety and fear of the future haunt my thoughts as I worry that I continue to worsen; troubled by what FND will take from me next. The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control.

"The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control. " Share on X

But it’s not only anxiety of the future that continually haunts me. With the increase of falls that I experience, leaving the safety and comfort of home has become daunting and anxiety-inducing.

As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms to contend with alongside the physical manifestations of chronic illness.

"As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms we are forced to contend with." Share on X

Disappointing Myself Because of Limitations

As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the limitations of my body and health. Things that once came effortlessly have now become difficult. I often find myself unable to get out of bed straightaway in the mornings due to the severe weakness in my legs, for example. The ever-growing limitations have made me more reliant on others. As a result, I often feel great disappointment in myself.

"As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the new limitations of my body and health." Share on X

girl crying while touching glass window — Living with disabling symptoms can result in anxiety about a lot of things, but especially about going out as we can never know when symptoms are going to appear. It can lead to a lack of confidence, isolation and depression.

Recently, with the increasing number of times my legs have collapsed, I have lost all confidence in not only them but going out. As a result, I have backed out of countless trips, anxious that my legs will do so while out. With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depressed feelings also.

"With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depression." Share on X

Switching Up Thoughts of What Came First

Many of the symptoms that I experience due to FND can also be signs of conditions such as anxiety. Anxiety itself can produce physical symptoms such as shaky legs, a racing heart and shortness of breath as examples.

The lies that depression and anxiety whisper to you can lead to self-doubt and the belief that the symptoms you are experiencing are all in your head and ultimately your fault—photo by **Kat Jayne** from **Pexels**.

For me, I am well aware of this as for many years, the symptoms I was experiencing, were attributed to depression and anxiety. Such conclusions only strengthened when physical tests came back as normal. It took many years and many many hospital appointments before receiving the diagnosis of a Functional Neurological Disorder and probable Cerebral Palsy. At that defining appointment, the specialist assured me that the symptoms weren’t due to depression or anxiety; and it was not ‘all in my head’ as I had heard many times before. Instead, the depression and anxiety I experience are a result of living with a long-term neurological condition.

"Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. They persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick." Share on X

But still, as depressed and anxious thoughts run throughout my brain, I begin to doubt this fact, however. Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. During my worst times with this illness, they persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick.

Chronic Illness: Forming A Battle Between Physical and Mental Health

In my history of living with FND, depression and anxiety have become adjoining features of my experience with it. But it is not only my experience. According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants. Research has also suggested that anxiety is more common in persons with a chronic disease than in the general population.

When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me

"According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants." Share on X

Physical and mental health are inextricably linked, both working in unison and having a significant effect on the other. When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me. But, I have also learnt that to thrive, I cannot focus on just one aspect of my health. Instead, I need to work on both physical and mental health to live a happier and brighter life.

"When battling through a severely debilitating flare, it can feel like as though my physical and mental health are conspiring against me." Share on X

October Link-Up Party with A Chronic Voice

In Chronic Illness

The Everyday Performance of Appearing Well

September 30, 2020 1 Comment

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

In Chronic Illness

What Happens When Pain Becomes Chronic

September 13, 2020 5 Comments

It is hard to imagine a time when chronic pain did not play a significant part in my daily life. That time is incredibly hard to envisage as I lay here in excruciating, searing pain.

But there was a time when chronic pain, was just a mild annoyance. To me, it was just pain. Yes, it hurt and made life difficult, but it was something that I could handle. I thought that it was normal, a sign of growing pains and not of anything wrong, especially anything serious.

Oh, how I wish I could return to the days before the pain became chronic and overwhelmingly relentless. Before I could no longer remember what it is not to be in constant, excruciating pain. Photo by Anthony Tran on Unsplash.

Oh, how I wish I could return to those days. But today, especially on one of my worst days I can’t imagine what it is not to be in pain. Or a time when it was anything but chronic. The time when the problem was considered normal and not a permanent reminder of the neurological disorder that has consumed my entire being.

"But today, especially on one of my worst days I can't imagine what it is not to be in pain. Or a time when it was anything but chronic." Share on X

Now, I can no longer remember how it feels not to be in pain. Or even how long it has been since the pain has become chronic. Or a permanent feature in my life. But it has now become my reality. One that continues to flare and get worse, and to which I have to learn to adapt to time and time again.

"Now, I can no longer remember how it feels not to be in pain. Or even how long it has been since the pain has become chronic. Or a permanent feature in my life. But it has now become my reality." Share on X

Often Feeling Nothing Than The Pain Itself

Yes, when living with chronic pain, there are good moments as well as bad. The problem, however, is that the bad days often heavily outweigh the good. And of course, there are the frequent awful days. The days in which chronic pain consumes the entire day, sometimes days.

"Yes, when living with chronic pain, there are good moments as well as bad. The problem, however, is that the bad days often heavily outweigh the good. And of course, there are the frequent awful days." Share on X

It is on these awful days that it seems that the only sensation that I am aware of is pain. The feeling of the soft material caressing my skin or the cold of the metal of the bracelets surrounding my wrist does not register. Instead, I am only aware of the throbbing, squeezing and stabbing pains that dominate deep inside my weakened legs.

curled up in a foetal position because of pain — When pain becomes chronic, it can often seem like the only feeling we can discern is the pain that is ravaging our bodies.

The pain is constant; yes, there are times when it might be better than other days, but there is never an off-button. Living with chronic pain, the feelings and sensations that it invokes never stops. Pain is often wholly overwhelming, entirely unpredictable, and frustrating. One from which we have no respite or holiday from, however much we wish that we could.

"The pain is constant; yes, there are times when it might be better than other days, but there is never an off-button. Living with chronic pain, the feelings and sensations that it invokes never stops." Share on X

Chronic Pain Is Gruelling and Exhausting To Live With

The persistent and constant unpredictable nature of chronic pain means that to live with it is gruelling and tiresome. Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions.

"Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions." Share on X

But often, the difficulty in navigating such terrain is that it continually changes. And as the territory changes, so do what we can tolerate. No one day is predictable; one day, I might be able to accomplish the tasks I set for myself but unable to do anything at all on another. Some days I able to push myself further than my limits but on others doing so only makes the pain worse.

The persistent and constant unpredictable nature of chronic pain means that to live with it is gruelling and tiresome. Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions.

Chronic pain continually pushes you to your limits and further pushes your boundaries. It is continuously relentless and all-consuming; a storm that cannot stop, only weathered.

"Chronic pain continually pushes you to your limits and further pushes your boundaries. It is continuously relentless and all-consuming; a storm that cannot stop, only weathered." Share on X

Tempting To Hold Onto Hope; The Thought That It Will Get Better

Despite the ferociousness of chronic pain, however, I still find myself holding onto the hope that it will change. The hope that the pain will miraculously disappear never to return and life will forever be different.

However much I wish that the pain will disappear I wake up disappointed when I wake and it remains.

Each morning, however much I hope that things will be different, I am immediately met with searing, debilitating pain. And each morning I feel so sad, disappointed, and deeply frustrated that the pain remains the same; and life isn’t any different than the previous day. Heartbreakingly, of all is that when the pain becomes chronic, this scenario becomes our hellish version of Groundhog Day.

"Each morning, however much I hope that things will be different, I am immediately met with searing, debilitating pain. And each morning I feel so sad, disappointed, and deeply frustrated that the pain remains the same." Share on X

The Dream of Running Away From The Pain

When pain firsts start, or before it becomes chronic, it is easy to run from it. At first, pain is benign and only slightly bothersome, so distraction is easy, and pain is something that you can handle and put up with relative ease.

When it becomes chronic, however, pain is much harder to cope with, and making distraction much harder to implement in life. At this moment, whilst in unbearable pain, I wish I could run from it; running from chronic pain is something that I always wish I could do. It’s as if by denying it’s very existence will stop it from hurting and not affect me or have the impact it does on my life.

"Running from chronic pain is something that I always wish I could do. It's as if by denying it's very existence will stop it from hurting and not affect me or have the impact it does on my life." Share on X

However, I am unable to run from the pain that is destroying my legs and my life. Although I try to outrun it, pain continually reminds me that it is stronger and faster than I. Pain always catches up with me, and am reminded of its power and ferocity. Nor does time stand still while consumed by pain. No, time and life continue while pain perseveres with its destruction, and I still suffer.

"Although I try to outrun it, pain continually reminds me that it is stronger and faster than I. Pain always catches up with me, and am reminded of its power and ferocity." Share on X

But my running from the pain, I am also running from the reality of my life with chronic pain. By doing so, I am unable to address my chronic pain. Only by addressing it and the FND that has consumed my life, I can move forward and find ways to live with it instead of against it.

Thoughts of Mending The Pain, Until It Becomes Chronic And Mending Can No Longer Transpire

Pain is something that everyone has experienced. We hurt or injure ourselves, and pain suddenly appears. It’s often excruciating and distressing, but there is comfort in the knowledge that it is temporary, with an expiration date. We know that our bodies will mend itself, and the pain will dissipate.

But such comfort does not exist when one suffers from persistent chronic pain. Because living with chronic pain, there is no expiration date. It is not temporary, with no end in sight.

Life becomes a battleground; us versus the pain

"But such comfort does not exist when one suffers from persistent chronic pain. Because living with chronic pain, there is no expiration date. It is not temporary, with no end in sight." Share on X

Instead, pain begins to dictate our lives. It dictates whether we can get out of bed, wash our hair, leave the comfort home or even meet a friend for lunch. Life begins to revolve around pain as every decision; every task needs to consider it as to whether we can say yes to it.

"Life begins to revolve around pain as every decision; every task needs to take it into consideration as to whether we can say yes to it." Share on X

We try anything and would gladly give up anything to fight and defeat the pain. It becomes a battleground; us versus the pain – a fight that we often lose and often nothing helps ease it. And so we quickly learn that mending may never be possible, so instead are forced to find ways to cope with it as best we can; anything to stop it from driving us crazy or continually stealing even more pieces of our lives.

"We try anything and would gladly give up anything to fight and defeat the pain. It becomes a battleground; us versus the pain – a fight that we often lose and often nothing helps ease it." Share on X

In what ways, has your life changed when your pain became chronic?

This blog post was written for Pain Awareness Month and as part of the September Link-Up Party with A Chronic Voice.

In Chronic Illness

From Shame to Pride: Finding Pride in Disability

August 15, 2020 3 Comments

I am not sure if I’d consider myself disabled. To look at me, you would not immediately bear witness to the complications and challenges that arise from living with a neurological disorder such as FND. So, if I don’t look disabled, does that mean I’m not? At times I felt the condition did not disable me significantly and could get on with daily life with relative ease. Despite this, however, I am interested in events that raise awareness. Still, I was surprised about the existence of Disability Pride Month.

"To look at me, you would not immediately bear witness to the complications and challenges that arise from living with a neurological disorder such as FND. So, if I don't look disabled, does that mean I'm not?" Share on X

Disability Pride aims to promote disability as a natural part of human diversity, and beautiful one at that. Photo by **Ann H** from **Pexels**.

A lack of visibility surrounding disability and issues related to it within society still exists despite efforts to change this. And perhaps a significant reason for my ignorance of the existence of Disability Pride. Disability advocates use the month and its celebrations, such as parades, for example, to raise awareness of the social inequalities that disabled people continuously face. To change how people think about and define disability. And to attempt to end the stigma that still surrounds it. From my understanding from my research and what I have read online such celebrations aim to promote disability as a natural part of human diversity. It is to turn shame into pride by redefining what it means to live with a disability.

Am I Disabled Though?

Despite living with severe and debilitating symptoms, symptoms that impact and reduce my quality of life, I failed to identify as a disabled person. And despite the continued experience of chronic pain, spasticity, visual disturbances, and severe weakness in the legs, I still didn’t see myself as a person with a disability.

"Despite living with severe and debilitating symptoms, symptoms that impact and reduce my quality of life, I failed to identify as a disabled person." Share on X

I felt that there was a mismatch between my conceptions of disability and what it looked like and my experiences of living with FND. I felt that I didn’t fit into society’s notions of what disability is, but still was experiencing severe and debilitating symptoms. But am I disabled? Photo by Anthony Tran on Unsplash

The stereotypical view of disability is that of someone missing a limb, or someone needing the use of a wheelchair one hundred per cent of the time. The extent of the struggles associated with a disability easily seen and identifiable. Such definitions failed to embrace my circumstance and experience of living with FND. I still had full use of all my limbs, and only occasionally needed the use of a mobility aid. There were times when FND did not disable me significantly and managed quite well independently. There was a mismatch between my conceptions of disability and my own experiences of living with FND. And as a result, I failed to recognise disability as being part of my life with the diagnosis of a long-term neurological disorder.

A Person With A Disability I Was Now Becoming

But as I worsened and the need for a mobility aid became permanent, and a wheelchair became a fixture in my life; a person with a disability became something I now was.

It was hard enough to accept and assimilate a new identity of that of someone with a long-standing neurological disorder. Talking about my condition is such a monumental struggle; at the beginning, I didn’t fully understand it myself, so how could I talk about it with others? With the diagnosis, I could no longer deny that there was nothing wrong. It suddenly became real that I was dealing with a long-term condition and would be doing so for the rest of my life. I had to wave goodbye to me that existed pre-illness, and the hopes and dreams that I once held. Accepting the new identity also meant accepting the end of normality.

The increased severity of symptoms such as the trembling in the legs forced me to confront the reality of being disabled

Disabled was an even more difficult identity to welcome. It felt that by accepting this identity, I was also embracing the idea that I was different, weaker than before. And by embracing the title, I was suddenly becoming a burden on those around me.

"It felt that by accepting this identity, I was also embracing the idea that I was different, weaker than before. And by embracing the title, I was suddenly becoming a burden on those around me." Share on X

The Narrative Surrounding Disability

The narrative surrounding disability is that it is less than desirable. For some, disability is possibly one of the worst things that can happen to a person; believing that it is a fate worse than death. A typical portrayal of disability is as an evil force robbing a person of their strength, ability and independence. Something not defined as different, but instead seen as less-than; and used as a source of pity or inspiration.

The media portrays those with disability as either weak and in need of pity and compassion or used as inspiration, being labelled as ‘superhuman’ as in the case of Paralympic athletes.

In the media, stories regarding disability and disabled people are either used to elicit sympathy and compassion or otherwise celebrating and applauding them when seemingly ‘overcoming’ their disability, designed to inspire such as in the case of Paralympic athletes. Remember the constant use of the term ‘superhuman’ when describing these athletes?

"A typical portrayal of disability is as an evil force robbing a person of their strength, ability and independence. Something not defined as different, but instead seen as less-than." Share on X

Is it surprising that those living with a chronic illness is apprehensive in succumbing to the disabled identity? And how can we learn to celebrate and be proud of such a label?

Confronted With The Reality of Being Disabled

I find myself always confronted with the disabled body I now inhabit. It is evident when trapped in bed as a result of my legs refusing to cooperate and function. My identity as someone with a disability is undeniable after collapsing on the floor after my legs have unexpectedly given way. My disability is indisputable when I am heavily reliant on a crutch to help maintain balance, and when every step is a struggle due to debilitating pain and weakness.

I am constantly being confronted with the identity of a person with a disability now symptoms associated with FND are persistent and overwhelmingly disabling. I am confronted with it on a daily basis after falls, accidents and a lack of ability to do many things I used to be able to do. Photo by **Sofia Garza** from **Pexels**.

"My disability is indisputable when I am heavily reliant on a crutch to help maintain balance, and when every step is a struggle due to debilitating pain and weakness." Share on X

When the invisible becomes visible, it is painful. It is so because of the curious and often judgemental stares from others, especially after a fall. The looks of people wondering what it is wrong, and hearing the whispers that suddenly stop when you happen to look over. Once, I happened to listen to a stranger accused me of faking after such an incident, which left me upset and humiliated.

How Can I Be Proud of The Weakest Part of Me?

Such occurrences leave me feeling broken, humiliated and weak. Even more so on the days in which I am unable to get back on my feet. My only choice of having to sit or lie where I have fallen leaves me feeling more exposed and vulnerable; my brokenness and the abnormality of my legs on display for everyone one to see. These negative feelings such episodes evoke as well as the negative stereotypes surrounding disability causes me to want to rid myself of the label. I am unable to take pride or celebrate that which makes me feel more of a burden. How can I proud of that which diminishes me? The thing that which knocks me down again and again? And how can I be proud of the weakest part of me, that which many are afraid of and especially fearful of becoming?

"How can I proud of that which diminishes me? The thing that which knocks me down again and again? And how can I be proud of the weakest part of me, that which many are afraid of and especially fearful of becoming?" Share on X

In the media, the disabled become celebrated for achieving even minor accomplishments. A disabled person getting out of the house or attending a party in the eyes of the non-disabled deserves fervent recognition. But I feel that I have achieved more worthy accomplishments than just getting out of the bed this morning or leaving the house – achievements like gaining a degree is surely more deserving of a celebratory parade.

What Disability Pride Is

Disability Pride, however, is not about liking your disability. Nor is it about pretending that difficult and painful aspects of living with one do not exist.

Disability Pride is a celebration of disability and the differences and uniqueness of those living with them. It is not living with shame for our disabled bodies or disability. Disability Pride sees the worth and value of those living with disabilities despite the challenges and limitations that it entails. Photo by **Ylanite Koppens** from **Pexels**.

Disability Pride means not living with shame for my disabled body or disability. Disability Pride is dismissing the notion that due to disability, I am less able to contribute and participate in the world, or that I take more than I give. An opinion that the UK often likes to reinforce in the articles regarding disability and the UK benefits system. Or that I have less inherent value or potential than the non-disabled person sitting next to me.

"Disability Pride means not living with shame for my disabled body or disability. Disability Pride is dismissing the notion that due to disability, I am less able to contribute, or that I take more than I give." Share on X

Disability Pride is acknowledging that perfection in regards to the human body is unrealistic; instead, it promotes the idea that it’s perfectly normal to be imperfect and have flaws. I am encouraged to love my body, wobbly legs, and wonky brain included.

"Disability Pride is acknowledging that perfection in regards to the human body is unrealistic; instead, it promotes the idea that it's perfectly normal to be imperfect and have flaws." Share on X

Becoming Disabled Because of FND

Living with FND, and becoming disabled has forced me to encounter endless challenges, obstacles and adversity. The uncertainty I face every day of never knowing what my symptoms are going to do. And not knowing where and when my legs are next going to give way on me. Or not knowing what the future entails with regards to the illness and disability. There is tremendous adversity in not being able to go out alone and becoming heavily reliant on others to leave the house. Something that makes me feel like a massive burden on those closest to me.

As the symptoms of FND worsened; becoming more severe and disabling, the label of disabled is one that I had to learn to accept. Photo by **Ann H** from **Pexels**.

Since becoming disabled, I continuously come up against sadness, loneliness, and isolation. And at times, I have had to learn to advocate for myself and my needs. Such challenges have become so frequent they are a part of my life. I hate that it dictates how I can spend my days, and what I can or cannot do. A burden that weighs heavily upon me as it makes me feel weak and worthless. One I wish I could change, but despite my best efforts, I have found I cannot.

"I hate that it dictates how I can spend my days, and what I can or cannot do. A burden that weighs heavily upon me as it makes me feel weak and worthless." Share on X

The Unexpected Gifts of Disability

Despite the challenges that disability continuously provokes, it has also given me unique gifts. Perhaps these gifts were more thrust upon me, and my circumstances forced me to hone them over time.

Life with FND and disability has given me resilience. Despite the endless hurdles and setbacks, I find myself able to get back up, dust myself off, and try again. This ability continues to surprise me as I do and achieve things I never imagined I could. Despite disability and its forced limitations, I can be proud of what I have attained.

"Despite the endless hurdles and setbacks, I find myself able to get back up and dust myself off. This ability continues to surprise me as I do and achieve things I never imagined I could." Share on X

It has taught me compassion and the importance of understanding the pain that others withstand. Perhaps without my disability, I would not have otherwise had the chance to develop my writing, something which continues to give me purpose.

Us all need to recognise the gifts that disability can present to turn the shame to pride. Because if we continue to feel shame for our disability or chronic illness, then we continue to contribute to the perception that disability is less-than. A notion that not only diminishes ourselves but others also living with disabilities. Once more, it continues to reinforce negative attitudes of disability and those living with them.

"Because if we continue to feel shame for our disability or chronic illness, then we continue to contribute to the perception that disability is less-than." Share on X

Disability Pride Changing How I See My Disabled Self

Yes, I acknowledge that because of disability, I have lost so much. I have lost the normal function of my body, my independence and my confidence as examples. But Disability Pride encourages me not to dwell on these but to recognise and celebrate that which I can still do, and the accomplishments earned despite the adversity created by FND that is a massive part of my life.