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In Chronic Illness

5 Ways to Help Find The Light In The Darkness

November 20, 2020 3 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. For November, I have looked at ways to help find the light in the darkness during depressive episodes.

Trapped Inside A Revolving Door of Misery

During recent times it has often felt that I have become trapped inside a revolving door of misery. The symptoms I live with; symptoms that are already constant have become even more severe and relentless. Unsurprisingly, this has had a knock-on effect on my mental health; becoming depressed and anxious as the present flare refuses to abate. The result of which only exacerbates the already oppressive physical symptoms, which only makes me even more depressed and anxious. All in all, it feels like a terrifying ride I cannot get off.

"It has had a knock-on effect on my mental health; becoming depressed and anxious. The result of which only exacerbates the already oppressive physical symptoms, leaving me even more depressed and anxious." Share on X

Living with a chronic illness can have a significant impact upon mental health and as such it can be difficult to find light in the darkness especially during a significant and prolonged flare.

Life with FND has taught me that I have very little control over its physical symptoms. The symptoms have a mind of their own, and any attempts to rein them in only prove to be futile. When experiencing this type of severe flare, the only thing I can control is how I react to such events. And the only aspect of my health and current flare I can take control of is my mood. It is up to me, therefore, to find ways in which to find the light in the darkness; ways in which to lift my mood and make me feel a little better despite such unrelenting physical symptoms.

"Life with FND has taught me that I have very little control over its physical symptoms. The symptoms have a mind of their own, and any attempts to rein them in only prove to be futile. The only thing I can control is how I react." Share on X

5 Ways to Help Find Light In The Darkness During Depressive Episode

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What works for one person, however, may not work for another. So often it is trial and error to see what will work for you. But below are some suggestions which may help you out of a depressed or anxious funk, and help find light in the darkness during such episodes.

Incorporating a Comfort or Joy Box In Your Life

Well, what is a comfort or joy box? Put simply, a comfort or joy box is one which you keep items that make you feel happier or bring you comfort and to help you cope on those inevitable bad days.

"Put simply, a comfort or joy box is one which you keep items that make you feel happier or bring you comfort and to help you cope on those inevitable bad days." Share on X

I know how all-encompassing those days where anxiety and depression run rampant that it can be difficult even to remember what helps you get through such difficult days. Or fatigue that is so intense prohibits you from even searching for such items. Hence, by keeping them in a box altogether, in easy reach is so useful. Even using bright, colourful decorations to adorn the box is also enough to lift your mood during the dark days.

In my box, I like to include a whole host of brilliant comedy films; The Proposal starring Sandra Bullock being amongst my favourites. It isn’t easy to find humour or joy when chronic pain is overpowering your entire life. Watching such brilliantly films, therefore, is a welcome distraction from the excruciating effects from living with chronic illness. And it’s also a welcome reminder that I can still laugh and find joy even through the difficult days!

Experimenting With Pushing Your Comfort Zone

I know that when withstanding such challenging flares, it can feel safer staying within your comfort zone. Often, the depressed and anxious voices that accompany such confronting periods whisper lies that you cannot do something or push yourself because of the limitations caused by such intense symptoms.

"Often, the depressed and anxious voices that accompany such confronting periods whisper lies that you cannot do something or push yourself because of the limitations caused by such intense symptoms." Share on X

And although yes, it feels safe and secure staying within these limits, it only serves, however, to worsen the depressed and anxious feelings that accompany such flares. Staying inside the self-imposed limits chips away from your self-confidence, hating yourself, even more, when unable to escape.

But by pushing yourself outside your comfort zone using small, incremental steps may help you to increase your self-confidence and lessen anxiety. When successfully stepping outside your comfort zone, it increases your self-confidence as you begin to realise that you can do that thing or go to that place despite your symptoms telling you otherwise. The anxiety that arises when leaving your comfort zone also begins to lessen as you realise that you can do more than you believe.

"But by pushing yourself outside your comfort zone using small, incremental steps may help you to increase your self-confidence and lessen anxiety." Share on X

Sanitising Negative Thoughts

When experiencing a prolonged severe flare, it is so tempting to attend to the negative, depressed and anxious thoughts that accompany such a time. The thoughts that scream ‘you’re worthless and useless’, or those that tell you that this current flare will never end. And thoughts that entirely concentrate on how awful you are feeling and how oppressive the symptoms have become.

"When experiencing a prolonged severe flare, it is so tempting to attend to the negative thoughts that accompany such a time. The thoughts that tell you that this current flare will never end." Share on X

Although it can be challenging to think positively when experiencing intense symptoms, sanitising negative thinking can help you become more positive and making it easier to cope with life with a chronic illness – photo by **Blu Byrd** from **Pexels**.

These thoughts, unfortunately, we are forced to hear. However, we can choose not to listen to them or give them the attention they crave. Instead, in order not to be buried further into a pit of depression and anxiety, we need to learn to ignore and sanitise such negative thinking.

"Instead, in order not to be buried further into a pit of depression and anxiety, we need to learn to ignore and sanitise such negative thinking." Share on X

Instead, we need to focus on positive thinking and reminding ourselves of affirmations such as ‘This too shall pass.’ The more that we can think more positively, the more we start to believe such thinking and start to see the light out of the darkness.

Launching A Regular and Consistent Sleep

Sleep can be a tricky endeavour when living with chronic illness and chronic pain. And especially during severe flares, it can be even harder to achieve. But, not getting enough sleep can also worsen feelings of depression and anxiety, further making it harder to cope with the physical demands of chronic illness. I know myself, that if I do not get enough sleep the next day I am miserably exhausted, pain levels rise, mood dampens and left unable to cope.

As much as sleep can be hard to come by when living with pain and other debilitating symptoms. Not getting enough can also worsen feelings of depression and anxiety too – Photo by **Ivan Oboleninov** from **Pexels**.

"Sleep can be a tricky endeavour when living with chronic illness. During a flare, it can be even harder to achieve. But, not getting enough sleep can also worsen feelings of depression and anxiety." Share on X

But by developing a healthy bedtime routine; one that lets your body know it’s time to sleep can really help towards a good night’s sleep. For example, going to bed around the same time, every night allows the body to adapt to a more healthy circadian rhythm. And indulging in your favourite self-care practices before bedtime is also recommended as a way of relaxing both body and mind. For me, I like to read for at least thirty minutes before switching the light off. If pain continues to be a problem, consider using a heating pad against the most painful areas.

"But by developing a healthy bedtime routine; one that lets your body know it's time to sleep can really help towards a good night's sleep." Share on X

Writing The Blues Away

Illness has taken so much in my life – my mobility, identity and self-confidence, to name a few. For me, writing has allowed me to reclaim power back from the claws of chronic illness. Articulating my experiences through journaling and blogging allows me to process the experience of being chronically ill. It also helps validate such experiences, revealing hidden vulnerabilities that even I may not have been aware of, if not for purging my emotions on paper.

"Illness has taken so much in my life. For me, writing has allowed me to reclaim power back from the claws of chronic illness." Share on X

By writing my feelings, and becoming aware of masked insecurities it also allows me to become better adept at finding ways to manage fears and anxieties that arise during difficult times. For me, writing has become an important outlet for the frustrations of living with a chronic illness. It truly is a cathartic experience.

Writing can be an extremely cathartic experience and one which allows you to connect and help others. Thereby, it is an outlet that allows you to be productive – making you feel accomplished and happier – photo by **Lisa Fotios** from **Pexels**.

A Purpose In Writing

But it is a cathartic experience that not only helps me but allows me to connect with and help others in similar situations. Every like, retweet and comment on one of my many blog posts is a reminder that I am not alone in my struggle of living with illness, and hope others feel the same when reading my words. It is writing that has given me purpose and confidence in my abilities as my skills have improved. And I have become happier and self-confident as a result.

"Every like, retweet and comment on one of my many blog posts is a reminder that I am not alone in my struggle of living with illness, and hope others feel the same when reading my words." Share on X

One exercise that has really helped me is by writing down everything that I am worried about before bed. By leaving my anxieties on the page, they are no longer playing on my mind and making a good night’s sleep much easier to come by.

In Chronic Illness

Chronic Illness: A Battle of Mental Health

October 28, 2020 3 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

The Most Painful Parts of Living With FND

August 27, 2020 5 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This August, I use the prompts to discuss the most painful parts of living with FND.

If asked what the most challenging part of living with a chronic illness is, what would be your response? Many assume that the immediate answer would be the symptoms that accompany it.

At first, I agreed that the symptoms were the hardest part of living with FND. It is hard not to agree that they are the worst aspect of living with FND, especially at a time when symptoms are exceptionally debilitating.

For example, the weakness and trembling in the legs have become so severe that everything has become a monumental struggle. The constant dizziness is so intense that nowhere feels safe. And relentless, crippling pain so terrifyingly unbearable that I am often unsure that I would make it through the day.

But as I continue to ruminate on the question, I realised that there are numerous painful aspects of living with FND. The truth is that the hardest part of living with a chronic illness continually changes. The answer to the question may be dependent on the type of day I am experiencing or how I am feeling at that particular time. Some things once were the hardest part of living with FND but became more manageable to live with over time. The list of the most painful aspects of life with FND has only grown over time as the condition continues to worsen and challenge me and my life.

"The truth is that the hardest part of living with a chronic illness continually changes. The answer to the question may be dependent on the type of day I am experiencing or how I am feeling at a particular time." Share on X

So what are some of the most challenging and most painful aspects of living with FND? Here are some of the answers that immediately sprung to mind as I contemplated the question.

The Most Painful Parts of Living With FND

The Unlocking of Uncertainty

Everyone likes and feels comfortable with certainty. Certainty locks the monster that is uncertainty away inside a prison cell. But when living with a condition such as FND, uncertainty becomes unlocked from its prison to become another prominent part of life with a chronic illness.

"Certainty locks the monster that is uncertainty away inside a cell. But when living with FND, uncertainty becomes unlocked from its prison to become a prominent part of life with a chronic illness." Share on X

The frustrating uncertainty that accompanies chronic illness makes it extremely challenging to plan for the future, either the immediate future or the long-term. Every day met with impending apprehension, never being able to anticipate where or when symptoms will make an appearance. Forever uncertain whether each new day will bring few or no symptoms, or met with the whole set.

"Every day is met with impending apprehension, never being able to anticipate where or when symptoms will make an appearance. Forever uncertain whether each new day will bring few or no symptoms, or met with the whole set." Share on X

Life with FND, anxiety has been a constant companion in my life with it. Feelings of anxiety will arise about things that might or might not happen, and very often worried about things that I never needed to worry about in the first instance. When living with an illness, instead you become anxious about things that will very likely happen – you know certain things like experiencing a flare will happen, you just don’t know when.

"When living with an illness, instead you become anxious about things that will very likely happen – you know certain things like experiencing a flare will happen, you just don't know when." Share on X

The weakness and trembling in my legs often give way with no warning. Legs giving way, leading to falling, resulting in bruises has become a certainty in my life, but remain entirely uncertain when such an incident happens. And something that causes high anxiety in my life, as I am always on edge, waiting for it to happen, and worried that it would happen somewhere dangerous such as in the middle of a road.

A Continuing Number of Limitations

Accepting the label of someone with a neurological disorder and a disability was immensely challenging. I had to confront the reality of the far-reaching impact that the condition and its accompanying symptoms were having on me and my life. And as the years increased, symptoms worsened, becoming more debilitating and therefore limited in what I was able to do.

woman wearing distressed denim jeans sitting down inside room — So much time spent sitting down as the trembling in the legs limits me in what I can do in so many ways.

"FND has forced me to confront the reality of the far-reaching impact that it and its accompanying symptoms have on me and my life. The limitations it has causes is great and continues to grow." Share on X

As the years increase, it seems that the weakness in my legs is continuously deteriorating. The length of time I can stand because of it and the pain that ravages them is forever decreasing. It is this symptom that limits me the most. I am unable to do things or go anywhere that requires standing for any length of time. The distance I can walk for has also decreased, therefore limiting me even further, and becoming reliant on other people to be able to go out.

Studying, But Still Learning Nothing

At University, when needing to write essays, a process I always enjoyed was researching the given topic. I loved trolling through books and journal articles, finding the necessary information to back up my arguments. This skillset came in useful when diagnosed with a neurological condition to enable me to find out all I can about my diagnosis.

You can read all the books on FND there is and still have so many unanswered questions.

Unfortunately, a disorder like FND, however, the unknowns heavily outweigh the knowns. The books or reputable websites online could not tell me why this happened to me, or how to make it go away. It was like being stuck in a long dark tunnel, with the end nowhere in sight. And what I could glean on what treatments and therapies have helped other patients I had already tried with no benefit.

"Unfortunately, a disorder like FND, however, the unknowns heavily outweigh the knowns. The books or reputable websites online could not tell me why this happened to me, or how to make it go away." Share on X

It was demoralising; making me feel like a lost a cause and definitely one of the lowest points on my journey with FND.

Watching Everyone Else Moving On With Their Lives

Another of the ubiquitous aspects of living with any chronic illness is isolation. The experience of being ill itself is isolating, as we observe everyone else around us as being healthy, active and able-bodied. But it’s also isolating as we are frequently left behind; left at home. As a result of the severity of the symptoms, I am often unable to participate in the world, my community or life, as I once could.

"The experience of being ill itself is isolating, as we observe everyone else around us as being healthy, active and able-bodied. But it's also isolating as we are frequently left behind; left at home." Share on X

Instead, I am stuck at home, often in bed, crippled with pain and fatigue. Through the lens of social media, I watch others moving forward with their lives in ways that I am unable. And reaching milestones that I always imagined for myself but now feels too far out of reach.

When living with a chronic illness like FND, a lot of things begin to feel out of reach – friends, our dreams and aspirations and reaching milestones. Photo by **fotografierende** from **Pexels**

"Through the lens of social media, I watch others moving forward with their lives in ways that I am unable. And reaching milestones that I always imagined for myself but now feels too far out of reach." Share on X

Due to the severity of the symptoms I live with, I am unable to go out unless accompanied. As an adult, this is incredibly embarrassing and difficult. A part of my life that makes me feel like a child. And fear that like Peter Pan, I will never grow up.

A Fear That Healing Will Never Be

Like I fear that FND will never allow me to grow up, I also fear that it will never leave. I fear that the condition has left an indelible mark on my life that will never leave. And so perhaps more than I anything, I fear that I will never get better.

"I fear that FND has left an indelible mark on my life that will never leave. And so perhaps more than I anything, I fear that I will never get better." Share on X

The offer of a new drug, or new therapy offers renewed hope; the hope of getting better, or at least improving. But, that same hope is soon extinguished as improvements cease to materialise.

Perhaps I will always be this way. Maybe I won’t. But to live well alongside FND and its accompanying baggage, maybe I need to redefine my definition of healing.

The Most Painful Parts of Living With FND

August 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.