functional neurological disorder Archives

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.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly)

Yes, disability is a part of who I am, and at times a challenging one, but is one that I can still be proud of and should celebrate.

"Yes, disability is a part of who I am, and at times a challenging one, but is one that I can still be proud of and should celebrate." Share on X

In Chronic Illness

Parallels Between Chronic Illness & A Pandemic

July 24, 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 July, I have chosen to write about the parallels between chronic illness and a pandemic.

The recent events that have affected much of the world somewhat feel like a plotline from a film. What many of us are currently experiencing is slightly similar to what happens in the film ‘Contagion.’ Disclaimer, the first time I watched said movie; I silently thought ‘how far fetched! Never did I imagine that I would be living through such a pandemic, and watching it for the second time recently, it felt more like watching a documentary than a film.

The Parallels Between Chronic Illness & A Pandemic

The pandemic and subsequent lockdown have interrupted our lives; in fact, it has interrupted and affected every facet of our lives. It has pressed pause on life as we knew it, resulting in us scrambling for a new normal.

In much the same way as being diagnosed with a chronic illness, the COVID-19 Pandemic has pushed pause on all of our lives; interrupting our normal as we search for a new one. Photo by **cottonbro** from **Pexels**.

As time passes, I have begun to observe the parallels between living through a pandemic and living with a chronic illness. For example, both require you to make adjustments, as well as taking necessary precautions to keep well. Both interrupts and presses pause on life as we knew it. And both require finding a new normal; finding a new way to live when our life suddenly changes in all manner of ways.

"As time passes, I have begun to observe the parallels between living through a pandemic and living with a chronic illness. For example, both require you to make adjustments, as well as taking necessary precautions." Share on X

The Uncertainty Is Bothering Me!

The growing uncertainty surrounding the Coronavirus pandemic is starting to bother me. It is hard not knowing when it will end, or even what is or what is not safe. It is even more confusing when there is often such conflicting information from the government and the scientific experts. As well as the increasing uncertainty of what life will look like after it finally ends.

It is somewhat ironic that such uncertainty is bothering me so much. Why? Because living with a condition like FND, uncertainty is something that is a regular part of my life. Every night I go to bed, not knowing what sort of day I will experience. When living with a chronic illness, there are good days. And there are also awful days, where illness is the victor, leaving you defeated in a heap on the floor. Hell, often it is not even days, but often moments where life suddenly changes. The problem, however, is that when symptoms will abruptly emerge and disturbing our rare moment of peace is uncertain.

"It is somewhat ironic that such uncertainty is bothering me so much. Why? Because living with FND, uncertainty is something that is a significant part of my life." Share on X

Living with a chronic illness, therefore, forces you to learn to be okay with uncertainty, as otherwise fighting it makes you even more unhappy. In time, you learn to enjoy and make the most of the good moments and take the bad moments as they happen.

I have learnt to be okay with uncertainty as it pertains to living with chronic illness. So, why am I having such a problem with it during the current pandemic?

The Demanding Relentlessness of Symptoms of FND

As of late, the symptoms that I experience as a result of FND have become particularly demanding. Often, it has felt that I am being tortured and persecuted by cruel and relentless symptoms. The pain confined to my legs has been tormenting. When the pain isn’t being problematic, I have been finding myself overwhelmed with dizziness. And many days of my legs being so weak that getting out of bed has been incredibly difficult. And has made getting around the house incredibly challenging.

Sometimes the symptoms associated with chronic illness demands so much from us, and now the impact of the current global pandemic is doing the same.

As we slowly emerge from the lockdown measures imposed by the UK government, I too have emerged from my cocoon of isolation. The demandingness of such severe, relentless symptoms, however, have been unkind. As a result, emerging from my cocoon after so long, being cooped up inside has been more difficult than I had anticipated.

"As we slowly emerge from the lockdown measures imposed by the UK government, I too have emerged from my cocoon of isolation. However, emerging from my cocoon has been more difficult than I had anticipated." Share on X

Being diagnosed with a neurological disorder changes every facet of your life. It interrupts your life and the plans for the future in such a profound way that you can no longer recognise your life any longer. This pandemic has had such an effect; it has changed our lives so significantly. And for those of us living with chronic illness, it has altered our lives with them. Pauses in treatments and therapies have meant that many of us, symptoms have worsened, or the progress we had previously made is now lost.

"This pandemic has had such an effect; it has changed our lives so significantly. And for those of us living with chronic illness, it has altered our lives with them." Share on X

Nourishing Stress and Anxiety With Self-Care

Many people have reported feeling stress and anxiety as a result of all the uncertainty surrounding the current Coronavirus Pandemic. It has never been more important to revel in self-care. Nourishing our well-being is important not only for our bodies but is also essential for our mind and soul.

Stress and anxiety are very much a part of living with a long-term health condition. As the pandemic and lockdown continues, stress and anxiety have been reported by many as we all grapple with the ‘new normal’.

The stress of this current global predicament is very much like the stress of living with a chronic illness. The uncertainty and the many unknowns of our future lives with a chronic condition also cause stress and anxiety. Self-care becomes vital for our quality of life as well as for increased functionality.

"The uncertainty and the many unknowns of our future lives with a chronic condition also cause stress and anxiety. Self-care becomes vital for our quality of life as well as for increased functionality. " Share on X

It has never been more critical, therefore, to look after ourselves; body, mind and soul.

Telecommunicating To Fight Isolation And Loneliness

Another parallel between chronic illness, and a pandemic is the isolation and loneliness that they both create.

Often for those living with such conditions missing out become a natural part of life. During the current pandemic and lockdown, it has become something that we all are experiencing. Unable to see friends and family is now something that we are all forced to live with, whether living with illness or not.

One parallel of life with chronic illness and the current pandemic is the isolation and loneliness that is a consequence of both.

As a result, loneliness and isolation have become another consequence of the pandemic and subsequent lockdown. But something, those living with chronic illness, is all too familiar with, becoming another part of our daily life. Throughout the current pandemic communicating via Zoom or Skype has been a lifeline for many to keep in touch with our friends and family.

"Throughout the current pandemic communicating via Zoom or Skype has been a lifeline for many to keep in touch with our friends and family." Share on X

The symptoms I experience as a result of FND often make it extremely challenging for me to go out, and something I am unable to do alone. Consequently, attending support groups for those living with this disorder is extremely difficult for me. However, during the lockdown, I have been able to join in with such groups via Zoom. I have immensely enjoyed these chats and have become a lifeline in denouncing the loneliness and isolation I often experience.

Tolerating The Symptoms of FND As Well As Tolerating The Impact of Lockdown

Unfortunately, for many of us, there are symptoms that we experience that is seemingly immune to all potential remedies. No matter how many medications we try, or treatments we undergo the symptoms persist, seemingly irremediable, incurable.

Life with a chronic illness, and life during a pandemic are both situations that we cannot control. Our only choice, therefore, is to tolerate them and get through it as best we can. Photo by **Nandhu Kumar** from **Pexels**.

There is nothing that we can do, therefore, other than to tolerate such persistent symptoms. It is a hard lesson that teaches us that we are not always in control of our lives; instead, other forces have such power, like that of a long-term health condition.

"For many of us, there are symptoms that we experience that is seemingly immune to all potential remedies. No matter how many medications we try, or treatments we undergo the symptoms persist, seemingly irremediable, incurable." Share on X

Neither do we have such control over anything related to the current global pandemic. There is nothing to do besides following the advice shared by our governments and the scientific and medical experts. Again, this has been a lesson that we do not always have full control over our lives. A situation that we cannot control, but instead only tolerate.

What other parallels between chronic illness and a pandemic can you think of? I would love to know your thoughts!

In Chronic Illness

Chronic Illness: A Burden & Being A Burden

July 14, 2020 2 Comments

Burden:
that which is carried; load
that which is borne with difficulty; obligation; onus

Living with a chronic illness is a burden. One that is unwelcome and not wanted.

The burdens that accompany chronic illness are exponential, far-reaching, and forever increasing.

But not only do we have to endure such burdens, but we also start to feel like a burden. Notably, a. burden to those closest to us; those forced to face the struggles and annoyances that accompany chronic illness with us.

"Not only do we have to endure a burden such as chronic illness, but it also makes us feel like a burden." Share on X

The weight of chronic illness is a heavy burden to carry. Photo by **Sathyaprabha Rakkimuthu** from **Pexels**.

A massive chasm exists between independence and dependence. The tsunami-like temperament of chronic illness firmly pushes you onto the side of dependency.

"A massive chasm exists between independence and dependence. The tsunami-like temperament of chronic illness firmly pushes you onto the side of dependency." Share on X

From Being Burdened To Being a Burden

Living with chronic illness forces you to become dependent on others for everything. From company to entertainment as well as support in everything from attending hospital appointments, preparing food, and even getting around the house. As the list of what you can no longer do without help becomes longer, it becomes difficult not to feel like a burden.

"Living with chronic illness forces you to become dependent on others for everything. As the list of what you can no longer do without help becomes longer, it becomes difficult not to feel like a burden." Share on X

The severity of the symptoms that I experience as a result of FND has increased my dependency on others. For instance, the severity of the weakness in my legs, as well as the constant dizziness, means that I am unable to go out alone. And as such, dependent on others to be able to go out into the world.

Monochrome picture of a woman with a shadow of a hand in front — There is nothing like relying on others for a lot of your care, and life to make you feel like a burden affecting your self-esteem and sense of purpose among other things. Photo by **Joanne Adela Low** from **Pexels**

I am also unable to stand for very long, leaving me unable to use public transport. I, therefore, have become reliant in particular on my father to drive me everywhere I need to go. The culmination of all the symptoms I experience also makes it challenging to cook or do other household chores without help. Because of all this, I too, have often felt like a burden on others. I often feel embarrassed and ashamed that at age 34, I am still in need of so much assistance.

One Burden of Living With Illness Is That Sometimes People Walk Out

Also, my temperamental brain became unable to tolerate certain places, places with high ceilings, for example. As such, going to the cinema, or going anywhere with a high ceiling is hugely uncomfortable and intolerable for me. Picking venues and situations that I can adjust to, or even tolerate, is a heavy burden.

And one such burden that people have been able to understand or accept, viewing it as a considerable inconvenience. And one that has resulted in many leaving my life, effectively ghosting or dumping me. Over time, it has made me more closed off and discouraged about finding love or even meeting someone new.

The fear of burdening another person has prevented me from letting anyone close to my heart. Or even into my life. This, and the fear of being viewed a burden.

Perhaps it is because of this; I am still single. If someone were to date me, and I often question why anyone would, it often feels that a man wouldn’t just be dating me but also the neurological disorder that encompasses my entire existence. The fear of burdening another person has prevented me from letting anyone close to my heart. Or even into my life. This, and the fear of being viewed as a burden by any potential suitors.

"Perhaps it is because of this; I am still single. If someone were to date me, and I often question why anyone would, it often feels that a man wouldn't just be dating me but also the neurological disorder I live with." Share on X

“Is It OK to Dump Him Because of His Medical Condition?”

In a recent edition of The Ethicist, a weekly advice column by writer Kwame Anthony Appiah, one reader sought advice about their short-term relationship. The reader explained that the person they had been dating has recently disclosed his diagnosis of Crohn’s Disease; an inflammatory bowel disease that can cause life-threatening complications if not cared for correctly. Armed with the knowledge of the illness and its potential complications, the reader goes onto ask if they would be in the wrong to end the relationship. In the letter, they cite that they wish to “shield [themselves] from the pain” if the worse were to happen, or from a future break-up if the partner’s illness became too much to handle.

a man and woman hands almost touching both with a red cross on the back of them — It is abhorrent that an article would suggest that it is OK to end a relationship because one of them has a medical condition and may. need care in the future. It plays into society’s notion that those with chronic illnesses and disabilities are a burden. Image by Free-Photos from Pixabay.

Appiah replied, “committing to this person may be committing to a life as a caregiver.” And he continued by stating “You don’t owe it to anyone to accept that burden.”

In one advice column – and in the New York Times no less, a prestigious publication seemed to endorse the fears and insecurities of many chronically ill and disabled individuals. That worry that we are a burden and that others see us as such too.

"In one advice column – and in the New York Times no less, a prestigious publication seemed to endorse the fears and insecurities of many chronically ill and disabled individuals." Share on X

And with these words, the author, Appiah and by association, The New York Times is promoting ableism against both this specific person and other chronically ill and disabled people potentially harmed by such advice. Furthermore, it is ableist to assume that everyone living with a chronic illness, like IBD or disability, is going to need a caregiver in a romantic partner. Many can manage their condition and their lives around it, without any assistance just fine.

We Are Not Burdens

Living with a chronic illness is a rollercoaster. It includes long periods of being able to manage, followed by hardships, setbacks, and flares. And back round to managing.

In truth, although there are many aspects of our lives that we often need help with, we tightly hold onto any slither of independence we can. For example, I stubbornly refuse help with chores such as changing my bed, or ironing my clothes, often to my detriment. Our autonomy is more precious to us as our independence becomes something so readily taken from us.

"In truth, we tightly hold onto any slither of independence we can. Our autonomy is more precious to us as our independence becomes something so readily taken from us." Share on X

The guilt and shame that exudes from chronic illness often whisper lies that I am a burden. But the truth is, that those who love me do not see me as a burden. Those who love you do not recognise you as a burden. Those who love us simply want to support us in any way they can. They understand the illness, or disability as part of who we are, but they also appreciate that we are so much more.

Chronic Illness is the burden and not you

It is not we that are the burden; it is the illness, condition or disability that has happened to us. For it is chronic illness that prohibits us from being self-sufficient and allowing us complete independence. It is the diagnosis we live with that demands a great deal of help and assistance from others.

"It is not we that are the burden; it is the illness, condition or disability that has happened to us. For it is chronic illness that prohibits us from being self-sufficient and allowing us complete independence." Share on X

You Are Not A Burden

I am sure, like me with the words of the New York Times article ringing in your minds, doubt, guilt and wonder creep in, questioning if you are indeed a burden. Let me assure you, that despite the many moments of feeling less than, and the many more of not being able to keep up with the demands of life, you are not a burden.

"Let me assure you, that despite the many moments of feeling less than, and the many more of not being able to keep up with the demands of life, you are not a burden." Share on X

You are so much more than your diagnosis, and far more independent and self-sufficient than you might believe. Don’t accept anything less from anybody than love, understanding and acceptance.

Let us dream of a fairytale romance, with the prince (or princess) of our fantasies, a realist, knowing we are only human and not seeing us as a burden while helping us with the demands of chronic illness that demands help and assistance.