spoonie Archives – Page 4 of 28

In Chronic Illness

Loving Yourself Isn’t Easy When Chronically Ill

February 15, 2021 1 Comment

There are insurmountable challenges when living with chronic illness. The constant, excruciating pain. The neverending fatigue that even the longest night’s sleep refuses to fix. The endless anxiety of never knowing when symptoms will strike next, leaving you incapable of doing well, anything. But one challenge is often overlooked. And that challenge is the ability to love yourself. No, loving yourself isn’t easy when chronically ill.

"The constant, excruciating pain. The neverending fatigue that even the longest night's sleep refuses to fix. The endless anxiety of never knowing when symptoms will strike. No, loving yourself isn't easy when chronically ill." Share on X

When we are diagnosed with a chronic illness, we wish we could break up with our bodies that insist on tormenting us with such debilitating symptoms – photo by **Gabby K** from **Pexels**.

It is easy to love yourself when things are going well, and the road ahead lies ample opportunities. The future looks bright and promising, and one which you cannot wait to explore. But all these carefully mapped-out-plans suddenly become rewritten by our bodies. The body that we thought we knew implicitly suddenly becomes something we no longer recognise. Our body is no longer a source of comfort and familiarity, but instead is now a strange, unfamiliar vessel that we loathe. It becomes a prison, holding us captive. A sentence which we are unable to escape, and which we must endure.

It may have been easy to love ourselves before the invasion of chronic illness, but it becomes increasingly difficult with it now a permanent part of our everyday life.

Why Is It Hard to Love Yourself When Living With a Chronic Illness?

It is hard to love a body when you can no longer recognise it as your own. After illness comes into your life, your body no longer feels like it once did. Nor does it work like it once did. The body once a friend now an enemy intent on making your life a misery. How can we love a body that is continually tormenting us?

"Your body no longer feels like it once did. Nor does it work like it once did. The body once a friend now an enemy intent on making your life a misery. How can we love a body that is continually tormenting us?" Share on X

It isn’t easy to love your body when it is continually reminding us that it’s flawed and wrecked with constant, debilitating pain. The first sensation I feel upon waking is intense, throbbing pain, and it is also the last thing I perceive before I go to sleep. If I am lucky to fall asleep, that is. However, more often than not, such intense, crippling pain keeps me awake all night, which those in the chronic illness community call painsomnia.

"It isn't easy to love your body when it continually reminds you that it's flawed and wrecked with constant, debilitating pain. It is challenging to love a body that lets you down and prevents you from living a 'normal' life." Share on X

In the morning, when I look in the mirror, all I can observe as I study my reflection is the extremely ashen complexion of my skin and the strikingly dark circles under my eyes. These two features make me look as tired and unwell as I feel. Even applying the best concealer I own does little to disguise the too dark circles under my eyes, or improve my complexion. Still, I look sick, affecting my self-esteem and becoming increasingly unconfident over my physical appearance.

It is challenging to love the part of your body that continually lets you down and prevents you from living a ‘normal’ life.

No, Loving Yourself Isn’t Easy When Chronically Ill

I hate my legs the most of any part of my body. They are the part of my body that hurts the most. I can no longer trust them as they frequently collapse from under me with no warning. As a result, I no longer feel safe in my own body, and it is a constant source of anxiety and worry. It is also beyond frustrating when my body refuses to go along with my plans.

"I no longer feel safe in my own body, and it is a constant source of anxiety and worry. It is also beyond frustrating when my body refuses to go along with my plans." Share on X

I feel self-conscious as I stumble around as my legs tremble beneath me. A gait similar to that of a drunk person; I feel people’s stares in judgment or puzzlement.

The constant failings of my body is a continual reminder that I am not in control of it, but instead am at the mercy of my own body.

"The constant failings of my body is a continual reminder that I am not in control of it, but instead am at the mercy of my own body." Share on X

With my legs and mobility worsening, I have become reliant on mobility aids to get around. Something that often makes me feel embarrassed and insecure. As I look around, I fail to see anyone else my age also needing such aids. I am unsuccessful in seeing myself or my experiences of living with a neurological disorder and disability reflected in the books, television programmes or films I surround myself with while trying to fill the void of my isolation. It often makes me question where, and even if I belong. As I feel I don’t belong, I struggle to make friends because it affects my self-worth and self-esteem. Just another reason why it can be a struggle to love myself.

"I can't see myself or my experiences of living with a neurological disorder reflected in the books, television programmes or films I surround myself with, making me question where, and even if I belong." Share on X

It Isn’t Easy to Love a Body That Holds You Back; Unable To Become The Person You Want To Be

It isn’t easy to love a body that holds you back. I had so many dreams and aspirations when I was young. I dreamed of a career as a psychologist, aspirations of travelling a little more, and perhaps marriage and children later on in life. But when my health deteriorated such dreams and aspirations seemingly became unreachable. And things that once were easy and now much more difficult due to the severity of the symptoms. Left, being unable to do very much by myself, leaves me feeling incredibly unproductive and worthless, to be honest. I feel trapped in the prison of my body, forced to endure painful and uncomfortable bodily sensations, feeling ashamed of how little I have achieved so far in my life.

"I feel trapped in the prison of my body, forced to endure painful and uncomfortable bodily sensations, feeling ashamed of how little I have achieved so far in my life." Share on X

Living a life in which I cannot do much, I always worry that I and my life are incredibly dull. With the inability to go out by myself, books, films and television programmes have become a passport to the outside world. With little experience or excitement, much of my conversations become focused on what I’ve read or seen. I worry that I have become boring, and is how I come across to others.

Trying To Not Let Chronic Illness Rob Me of Self-Love

Chronic illness has stolen so much from me, but I have also allowed it to rob me of self-love. But perhaps I have been looking at myself and my body all wrong. I have only been able to see what illness has taken from me. But as much it has taken, it has also given. When it feels the hardest, I should acknowledge all that my body can still do for me. At times, during a severe flare, it can feel that my entire body is failing I should shift my focus onto those parts that still are working.

"Chronic illness has stolen so much from me, but I have also allowed it to rob me of self-love." Share on X

I also need to remind myself that my distance from the world does not make me less, but instead gives me a unique perspective on life. When faced with the worst in life, you can appreciate and value the small pleasures in life, and because of it, we choose to be as good as we can to the world and those in it.

To combat the worthlessness and self-blame that chronic illness invokes, I instead need to embrace self-love. That means accepting myself and my illness despite wishing things were different. It also means yielding self-compassion when unable to do x, y or z and celebrating those times I can. As Whitney Houston once sang, “Learning to love yourself/Is the greatest love of all.”

"I need to accept myself and my illness despite wishing things were different. As Whitney Houston once sang, "Learning to love yourself/Is the greatest love of all." Share on X

In Chronic Illness

Anxiety; Through The Prism of Chronic Illness

February 2, 2021 1 Comment

Anxiety, like an unwanted stalker, has followed me for as long as I can remember.

Moments of panic and worry punctuated my life. Anxious thoughts overpowered my brain. All of which existed long before being diagnosed with a neurological disorder. Although the symptoms of which existed from a very young age, they became more pronounced as I grew up. However, doctors could find no cause to explain such symptoms. The anxiety that had always been a part of my life became a source of blame for my symptoms.

After many years of searching for answers, and many more doctors’ visits and hospital appointments, I finally had answers. I had a diagnosis and a physical explanation for my symptoms.

Often when doctors can find no organic cause for the symptoms a patient is enduring, anxiety is blamed -photo by **Suzy Hazelwood** from **Pexels**.

The anxiety that had long pursued me was, in fact, a symptom of a neurological disorder and not the cause of it as doctors had long suspected. You would expect that finally having answers would lessen and quiet it, but instead, this diagnosis only became an amplifier for my existing anxiety.

It used to be a complete mystery, but now I have a better understanding of anxiety through the prism of chronic illness. Now I realise that anxiety is not a separate issue but has developed because of a chronic illness.

"It used to be a complete mystery, but now I have a better understanding of anxiety through the prism of chronic illness. Anxiety is not a separate issue but has developed because of chronic illness." Share on X

Anxiety: Another Symptom of Living With Chronic Illness

On reflection, the sudden appearance of intense, mysterious symptoms triggered the fear and panic that often paralysed me, stopping me in my tracks. When I understood the symptoms and why they were occurring, it no longer elicited the same terror that they used to. The anxiety was still an issue, but I could now categorise it as another symptom of living with a chronic illness.

Every new twinge or pain causes a wave of anxiety as I worry what it means for me and my future.

There is still much of my condition that is shrouded in mystery. And it’s this unknown, the uncertainty that incites much anxiety in my life. With every new pain, or spasm, or symptom, an alarm bell begins to sound. I question whether such a sensation is normal, something related to my condition, or something else entirely. I worry as I try to work out if I should be worried.

"There is still much of my condition that is shrouded in mystery. And it's this unknown, the uncertainty that incites much anxiety in my life." Share on X

Becoming Hypersensitive and Overly Vigilant of Your Body and Health

When symptoms have gone on for so long, you can no longer remember how it feels to reside inside a ‘normal’ and fully functioning body. As a result, you aren’t always able to trust your perception regarding your body and subsequent health. As a result, you become incredibly hypersensitive and vigilant of your body in ways that you would otherwise never need to be.

"You aren't always able to trust your perception regarding your body. As a result, you become incredibly hypersensitive and vigilant of your body in ways that you would otherwise never need to be." Share on X

The unpredictability and lack of control over such relentless symptoms often mean that you can never really be prepared for when they are suddenly going to appear.

I usually spend energy, perhaps more energy than I can spare worrying on what people think of me, or whether I will be able to walk or get out of bed each new morning when I wake. Before I’ve begun my day, anxiety is there, as I worry what the symptoms will have in store for me for the day ahead. Thoughts fly through my head, such as “If I do this today, will it aggravate and worsen the symptoms?”

"Before I've begun my day, anxiety is there, as I worry what the symptoms will have in store for me for the day ahead." Share on X

Every day I worry that anything I do will somehow trigger or worsen symptoms.

On rare occasions, when mornings are uneventful, and symptoms are not present, there is a moment of joy. I imagine what can be done with this day of relative freedom from the confines of illness. However, this moment of ecstasy proves to be fleeting as once again, anxiety resurfaces. Thoughts such as “I might be feeling well, but I know that it won’t last for long” run through my mind. Anxious that at any moment, the symptoms will suddenly reemerge spoiling the day. There is also the worry of doing anything that may trigger the symptoms or worsen them.

Anxious When Leaving The House Alongside Physical Symptoms

In my experience, the unpleasant and relentless symptoms are difficult enough to live with and manage inside the safety of home. Symptoms can often be unpredictable and severe with nothing to do but to endure them. But symptoms can be much more challenging to control or predict when outside the house with all the outside world’s distractions. And as such, anxiety can often rear its head when needing to venture out into the outside world. The fear that the symptoms will suddenly appear ruining plans and our fun. Or when they do occur, we will be unable to manage or control them, thus leaving them to become out of control.

When living with a neurological condition, **there can be constant anxiety of suffering a fall** and left unable to get back up. Photo by **Daria Shevtsova** from **Pexels**

The most severe symptom that I have to contend with is the weakness and trembling in my legs.

Such symptoms can result in them giving way, without warning and leaving me lying in a heap on the floor. Such occurrences can be frightening even when at home. Leaving the house can be daunting. Images of my legs suddenly collapsing, leaving me lying in the middle of a road flash through my mind, or falling over and not being able to get back up. Flashbacks of the times such incidents have also haunted my thoughts, leaving a heavy pit of worry deep in the bottom my stomach

‘Anxious because I am unable to trust my own body’

A lot of the anxiety I experience is a result of not being able to trust my body. Every day it’s hit or miss whether my body will hold out. I don’t trust that my legs will allow me to walk. I don’t trust that I won’t get dizzy and need to hold onto something to steady myself. As a result of these severe, debilitating symptoms, I no longer feel safe anywhere. Anywhere can now seem threatening and unsafe, as my symptoms can follow me anywhere, so anxiety frequently follows me also.

"A lot of the anxiety I experience is a result of not being able to trust my body. Every day it's hit or miss whether my body will hold out. I don't trust that my legs will allow me to walk. I don't trust that I won't get dizzy." Share on X

"I no longer feel safe anywhere. Anywhere can now seem threatening and unsafe, as my symptoms can follow me anywhere, so anxiety frequently follows me also." Share on X

The many what-ifs surrounding my illness and all the uncertainty it creates means that my thoughts are continually racing. My mind needs to be frequently distracted; otherwise, I can spiral into panic. It is easy to find distractions at home. I practice mindfulness or play fun word games or complete jigsaw puzzles. I read or exercise to keep my mind and body as healthy as possible. But once I am out, the things I can do to distract myself are limited, so anxiety skyrockets. I become more vigilant of every sensation and symptom that is occurring within my body. The trembling in my legs heightens to the point that it feels they will collapse at any second.

Being At The Mercy of Both Anxiety and Chronic Illness

When living with anxiety and chronic illness, you are at the mercy of both. When there is a flare in either the symptoms of chronic illness or anxiety, the other will follow. Or when anxious, the already present symptoms will almost certainly worsen. When experiencing a severe, debilitating, crippling flare anxiety will also. Juggling anxiety on top of illness isn’t impossible but continually proves to be a frustrating and time-consuming challenge to master.

Anxiety has always been present, a by-product of an illness that I had yet to be aware of and continues to be a mystery. But it has been easier to understand through the prism of chronic illness. Anxiety is not a separate issue from living with a chronic illness but often develops because of it.

"Anxiety has always been present, a by-product of an illness that I had yet to be aware of and continues to be a mystery. But it has been easier to understand through the prism of chronic illness." Share on X

If living with a chronic illness was a battle, then it is one that I am unable to win. The skills such as mindfulness and breathing exercise have proven to be useful in lessening the anxiety but have had no effect on the physical symptoms I endure. But perhaps the anxiety that accompanies it is one that I can defeat.

Anxiety Through The Prism of Chronic Illness

In Chronic Illness

The Pain of New Year When Chronically Ill

January 17, 2021 7 Comments

As the clock strikes midnight on the 1st January, it so heralds the beginning of a brand new year. A new year offers the chance for a blank slate, new beginnings and exciting prospects and opportunities. However, when living with a chronic illness, the start of a new year can give rise to pain and uncertainty.

As January arrives, it is a time to celebrate the end of one year and the beginning of another. And a new year promises a fresh start and new beginnings but often not for those living with chronic illness. Photo by **Olya Kobruseva** from **Pexels**

"A new year offers the chance for a blank slate, new beginnings and exciting prospects and opportunities. However, when living with a chronic illness, the start of a new year can give rise to pain and uncertainty." Share on X

New Year, New Beginnings – But Is it?

New year, new beginnings, new year resolutions, new year and new me. The end of one year and the beginning of another can evoke great excitement and anticipation as thoughts preoccupy on ‘what’s next’? It provides an opportunity for self-reflection and self-improvement, which is when people with the best intentions set goals and make resolutions.

But when living with chronic illness, there are no new beginnings. Illness and its symptoms ignore the calendar, paying no attention to the date and with no care if it’s a holiday or a day of celebration. Symptoms appear leaving plans in disarray or left unable to engage with festivities along with everyone else. Often, chronic illness symptoms ruin the well-made plans of birthdays, Christmases and even appear during long awaiting holidays.

The new year and the future in general often leads to feelings of anxiety and apprehension as I reflect on previous years and realise how my life has changed for the worse as illness continues to progress and worsen.

However, after many years of living with FND and its cruel effects, and the more my life changes, I only feel apprehension and a sense of anxiety as a New Year approaches, and when looking to the future. I can no longer feel excitement for the forthcoming year. I cannot envision the potential new experiences and opportunities that so many can when looking to the future.

"After years of living with chronic illness, and the more my life changes because of it, I only feel apprehension as a New Year approaches, and when looking to the future. I can no longer feel excitement for the forthcoming year." Share on X

Instead, as I sit and reflect on the year that has passed, I can only envisage the worsening of the symptoms that constantly plague me; how I am worse now than the previous year. And forced to acknowledge the new limitations that have befallen me, and the abilities and such that illness have stolen from me. And as I look to the future, fear and apprehension begin to unravel as I can only fret whether there will be a further progression in my symptoms. As well as worry about what this disorder will take from me next.

"As I sit and reflect on the year that has passed, I can only envisage the worsening of the symptoms that constantly plague me; how I am worse now than the previous year." Share on X

New Years Resolutions: Symbolising The Unpredictability of Chronic Illness

As a new year emerged once more, my social media feeds began to fill with the resolutions that friends and acquaintances promised themselves they would keep for the year. The vow to lose weight, stop smoking or find that dream job they wish for themselves. Making changes allowing for self-improvement and progress in life.

As I reflect on my life with chronic illness, however, I realise that it is not feasible to make such vows. I often promise myself that I will accomplish something, only to have the unpredictability of my illness thwarting my intentions. I often go to bed telling myself that tomorrow will be the day that I get up early to do that thing I’ve meant to do only for tomorrow to arrive and I’m unable to get out of bed because my legs refuse to function. Or I’ve found that I’ve slept through my alarm after a restless night battling debilitating pain and excruciating muscle spasms.

The new year is also the time of the year when we tend to make resolutions, or goals on what we would like to achieve during the year. Difficult to make when living with such unpredictability like a chronic illness.

"As I reflect on my life, I realise that it is not feasible to make such resolutions. I often promise myself that I will accomplish something, only to have the unpredictability of my illness thwarting my intentions." Share on X

As I fail to accomplish my goals, I only begin to feel bad about myself, beating myself up for not doing so. It makes me feel like a failure. And so I do not make such resolutions as I do not need or want the additional, undue pressure.

As Every New Year Passes There Is No Change; Still Enduring The Same Symptoms

For some, it might be ‘new year, new me’ but when living with a chronic illness, there are no new beginnings or a new self. Life and the symptoms that accompany illness continue to be unpredictable. There is no time or room to establish a ‘new me’. All my time and energy seem to concentrate on enduring the relentless, debilitating symptoms that are wreaking havoc upon my body. Trapped in limbo, never knowing when it will end, or when my body will allow me to function enough to be able to accomplish anything.

"For some, it might be 'new year, new me' but when living with a chronic illness, there are no new beginnings or a new self. Life and the symptoms that accompany illness continue to be unpredictable." Share on X

Self-improvement and progress are hard to achieve when symptoms continue to worsen. I have often found that I have taken one step forward toward progress only to be forced two steps backwards. Reflecting on the years of living with illness, I can only envisage stagnation and decline. And with no signs of improvement or progress.

Revealing The Best Way to Live Life Is To Let Go of Expectations

A lesson that living with chronic illness has taught me is that expectations often lead to disappointment. After every new prescription or new treatment leads to an expectation of improvement and recovery. But this expectation only led to disappointment as they fail to improve the symptoms that they’d promise to benefit. The promise of a sign of improvement only leads to disappointment when it does not last.

I may have to let go of expectations, but still, I can wish for magic and look for ways to reinvent myself despite the adversity thrust upon me by the relentless symptoms of FND. Photo by **Olya Kobruseva** from **Pexels**

"After every new prescription or new treatment leads to an expectation of improvement and recovery. But this expectation only led to disappointment as they fail to improve the symptoms that they'd promise to benefit." Share on X

Living life with a chronic illness is overcoming the expectation of how you imagined the year was going to be (as well as the rest of your life). And more importantly, it is gauging how to reinvent yourself alongside such adversity to live your best life despite it.

"Living life with a chronic illness is overcoming the expectation of how you imagined the year was going to be (as well as the rest of your life). And more importantly, it is gauging how to reinvent yourself alongside such… Share on X

Living without expectations allows you to be open-minded; and welcome uncertainty and surprises, good or bad. Letting go of the idea that we have control over what happens to us. Life with FND has taught me that unfortunately, I have very little control of my life and body. Sadly, I am continuing to learn its symptoms have much more control than I would like.

It means going along for the ride, whatever it has planned. Life with a chronic illness is far easier when we can roll with its punches, rather than be defeated by them.

Gracing The Future With Hope

As much as living with chronic illness and its symptoms is a colossal endurance race. But, there is also tremendous endurance in living and surviving chronic illness and chronic pain. I am often unable to acknowledge, but I continue to survive the many ordeals it throws at me. One of the most surprising things I have learnt is that as much as FND steals from me, there is still so much that it cannot take from me.

"As much as living with chronic illness and its symptoms is a colossal endurance race. But, there is also tremendous endurance in living and surviving chronic illness and chronic pain." Share on X

There is still so much joy and wonder to experience despite such adversity and suffering. And that wildly positive and infinite things are still possible despite evidence to the contrary. Despite the continued struggles with illness, I will try gracing the future with hope and strength. And gracefully accept the unknowns and uncertainty that illness compels.

I am going to try and grace the future year with hope, positivity and strength despite the continued struggles from the severe, debilitating symptoms affecting my life.

I will continue to give up on making resolutions and plan small things that I can control. Plans such as what book I will read next, or what chocolate I will devour tonight for my weekend treat!

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. In January, I have chosen to write about the pain and uncertainty that the New Year can provoke for someone living with chronic illness.

In Chronic Illness

What The World Learnt About Chronic Illness

December 29, 2020 No 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. In December, I have written what the world learnt about chronic illness in 2020 because of the coronavirus pandemic.

What, a terrible year 2020 has been for us all.

A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many. Never could we have imagined that within the first few weeks of the new year, a virus would sweep across the world, resulting in a pandemic that would disrupt life as we knew it.

2020 was the year of the pandemic as coronavirus swept around the world. It was also a year in which the world learnt about living with a chronic illness – photo by **Anna Shvets** from **Pexels**.

"What a terrible year 2020 has been for us all. A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many." Share on X

As we watched the news, night after night, with horror, we witnessed the death toll rising; every statistic representing a family grieving a loved one taken by this cruel and relentless virus. But the virus did not only affect those who lost a loved one because of it, or those unlucky enough to contract it but affected us all.

A Pandemic and A Lockdown

For months we did as the government asked and stayed at home, leaving the house only if necessary. Many began working from home, and parents became teachers as schools shut its doors. Nights outs were swapped for nights in binge-watching the latest offering from our favourite streaming services. Our movements became restricted as the virus continued to spread And we were all forced to adapt to a ‘new normal.’

As the pandemic worsened lockdowns became enforced as the world was forced to close non-essential shops, hospitality establishments and so on

However, for those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness.

"For those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness." Share on X

What The World Learnt About Chronic Illness In 2020

Living With Constant Uncertainty is Exhausting and Overwhelming

When living with a chronic illness, uncertainty becomes closely tied alongside the new title tethered forevermore to your existence. One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day and making it difficult to commit to anything. The symptoms that accompany illness are also uncertain, never knowing when they will next appear; or whether they will improve or worsen over time.

"One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day." Share on X

Uncertainty is something that is deeply familiar for those living with chronic illness, but it has also been something that has been felt throughout the world as the pandemic caused a great deal of it – photo by **Josh Hild** from **Pexels**

The current COVID-19 pandemic has created a deep sense of uncertainty and fear that many have experienced because of it. Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness. These worries and the uncertainty regarding job security and finances have been exhausting and overwhelming for everyone during the pandemic. Many people have reported feelings of depression and anxiety during these events, especially with the recurring lockdowns.

"Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness." Share on X

As a result, 2020 has been the year when the world realised how living with constant uncertainty is exhausting and difficult.

Constantly Being at Home Is Neither Nice Nor Exciting

As well as the extremely overused question of, “How are you?” another question often asked is “So, what do you do?” A question that many living with a chronic illness dreads as many of us have to explain why we are unable to work. Instead of encountering judgmental comments, many reply on how enjoyable and exciting it must be to spend so much time at home.

In truth, days are spent behind closed doors enduring excruciating pain and other such horrible symptoms. But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed. And as pleasurable it may sound to watch as much Netflix as time allows, it soon becomes tedious and tiresome.

As the lockdown continued for several months, and we all stayed at home, the world learns that it is not a treat or exciting being confined – photo by **Matthias Groeneveld** from **Pexels**.

"But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed." Share on X

But many people reported struggling with the confinement inside the same four walls during the lockdown. Many cried that they had enough of binge-watching entire seasons of whatever show became the latest obsession. Many wished for the pandemic’s quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous.

"Many wished for the pandemic's quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous." Share on X

A Year of Very Little Socialising and a Case of Not Going Out

For those living with chronic illness, a popular meme exists which has become popular on social media. It is one that reads ‘The Bins Go Out More Than I Do.’ During 2020, however, it became a meme that I have seen shared countless of time and nor just by the chronically ill community. For the course of the lockdowns, the reality for the majority was this very predicament.

The reality of living with a chronic illness means that cancelled plans or the feeling of not being able to do what you’d really like to becomes the norm. There exists grief of feeling as if you are missing out on your life. As well as constantly needing to grieve the time you have lost or everything you have missed out on.

"Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family." Share on X

Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family. Or the intense frustration of being unable to do what you want. All of which are too familiar for those living with chronic illness and will continue long after the pandemic has ended.

A Time of Indulging In Social Media and Telecommunication

When living with a chronic illness and experiencing intense, debilitating symptoms, it isn’t easy to visit friends and family. Long days and nights spent alone with only symptoms for company, still yearning for social contact.

Computers were used a lot during this year for keeping in touch with friends and family with frequent Zoom calls! But the world now knows it’s not a substitute for a physical hug!

Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact.

"Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact." Share on X

With months and months of only being able to keep in contact with loved ones via FaceTime or Zoom the world has now realised that social media interactions are not the same as face to face interactions. And never again will people underestimate the power of a physical hug from loved ones.

Anxiety Rearing Its Head When Cutting The Ties of Isolation

From living with a chronic illness, I know that isolation is hard going, but so is escaping it. When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, the comfortable sofa in the living room (when I can reach it) and my thoughts. There is only knowledge of how excruciating the pain has become or the intensity of other such abhorrent symptoms.

"When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, or the comfortable sofa in the living room and my thoughts." Share on X

When the flare subsides, and your body is now allowing you the chance to go out once again, the wonder of the outside world is mixed with terror. Suddenly, going outside and doing things you once did evokes anxiety and worry. It’s as if I have landed on a different planet, everything different and threatening. After being confined for so long, it can feel like you will die when leaving the safety of home. You are not, of course, and you begin to breathe slowly, reminding yourself that this is something you used to do all the time.

Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before. The anxiety we feel because of chronic illness, and theirs is not the same, however. One occurs due to a sickness that already exists, the worry of exacerbating it and becoming worse. The other exists as a result of avoiding becoming ill, the fear of coronavirus affecting so many.

"Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before." Share on X

In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again. It has been a year in which the world learnt a lot about life with chronic illness. Let’s hope they remember the lessons.

"In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again." Share on X

In Chronic Illness

Toxic Positivity: Positivity Is Not A Magical Cure

December 8, 2020 6 Comments

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

What is Toxic Positivity?

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

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

The Idea That Positivity Is A Magical Cure Is Itself Toxic

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

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

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

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

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

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

Positive, Yes, But Still Sick

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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