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In Chronic Illness

Am I A Warrior? No, I Am Just Enduring

February 27, 2020 4 Comments

On reflection, I’ve come to realise how much I’m always fighting. And no, I’m not fighting in a war. But I am fighting for my life; fighting for some semblance of normality.

A warrior. A person described as an experienced and skilled fighter.

Warrior, a short word that divides many within the chronic illness community. One which many resonate with, the recognition of the constant fight and struggle of living endless symptoms of a never-ending illness. For others, they try and distance themselves from the phrase, one which does not resonate with them as the disease has become a part of them, and to fight it, would be to battle themselves.

Those living with chronic conditions such as I, we are often referred to as ‘warrior’. But am I a warrior? No, sometimes it doesn’t feel like it. At times it feels like I am merely enduring.

In the post ‘Embracing The Warrior Inside’, I discussed the term ‘warrior’ and how I began to resonate with it, in my own life of living with a neurological disorder. It became a word I related to, as I came to realise the fight I conquer every day. And despite the insurmountable odds that the disabling symptoms put in my way.

It can be easy to feel like a #warrior during moments of stability and relative wellness. But when we are flaring and feeling worse than ever, as I am finding out, then we feel anything but a warrior. We can feel weak, useless and a burden #spoonie #chronicillness #chroniclife https://t.co/6ljRHMQ2sN
— Rhiann Johns (@serenebutterfly) February 18, 2020

However, I have come to appreciate that it can be easy to feel like a warrior when we are experiencing moments of stability and relative wellness. Of course, the symptoms of chronic illness never disappears, but when they aren’t as disabling and feel like we can conquer anything despite them, we can feel like a warrior. We can feel like a victor.

"It can be easy to feel like a warrior when we are experiencing moments of stability and relative wellness. We can feel like we can conquer anything despite chronic illness; we can feel like a warrior. We can feel like a victor." Share on X

But even when our physical health is at it’s worse, if our emotional health remains unscathed, the warrior mentality remains intact. Even during these hard times, there is still a piece of mind that this too shall pass. A place in which self-blame and judgement do not exist, despite the tenacious essence of such symptoms.

Those Times When The Warrior Title Doesn’t Fit

But what about those times when we are amid a severe and debilitating flare? The times when everything feels like an impossible struggle; or those times when despair and hopelessness accompany the persistent and disabling symptoms? And the times in which our customary emotional resilience for coping with the demands of chronic illness has seemingly disappeared?

Well, inevitably these are the times when the ‘warrior’ hat we usually don, no longer fits. This hat no longer fits when the constant struggle of living with a chronic illness becomes too much to bear. The times when the symptoms become exceptionally crippling that, we can scarcely cope; drowning in the pain and misery that such symptoms cause. And finding ourselves unable to keep our heads above the water as the storms persist.

"The warrior hat no longer fits when the constant struggle of living with a chronic illness becomes too much to bear. The times when the symptoms become exceptionally crippling that, we can scarcely cope." Share on X

When in the middle of a severe and debilitating flare, it can feel like we are drowning, and unable to keep our head above water.

A surge of grief begins to dominate our very existence as the losses increase as a consequence of the continued damage to our functionality. The “I can’t” that we once denied slowly becomes our truth, as everything, even living, becomes a challenging battle. The inability to do those things that once came so naturally takes up so much room in our minds, that it can feel like we are less than or have very little to offer to the world.

"The "I can't" that we once denied slowly becomes our truth, as everything, even living, becomes a challenging battle." Share on X

And So No, We No Longer Feel Like a Warrior

And so, we no longer feel like a warrior. The feelings that conjure when being a warrior such as bravery and positivity is replaced with feelings of weakness, being useless and a burden to others. When amid a severe and debilitating flare, the warrior inside of us has disappeared, we are unable to fight. And as we are unable to resist, we can only lie and endure the pain and agony of such a flare. And our days become consumed by the disruption, and our lives become preoccupied with existing rather than living.

"When amid a severe and debilitating flare, the warrior inside of us has disappeared, we are unable to fight. And as we are unable to resist, we can only lie and endure the pain and agony of such a flare." Share on X

But still, we paint a smile and pretend that we are okay. And yet, we don the hat of a warrior, despite that it no longer fits. Often, there is an added pressure from outside forces such as the media, that being a warrior, and fighting the illness as if it’s a mortal enemy is the only acceptable way to be ill. And the only sufficient way to cope with living with a chronic disease.

"Often, there is an added pressure from outside forces such as the media, that being a warrior, and fighting the illness as if it's a mortal enemy is the only acceptable way to be ill." Share on X

The Metaphors Used To Describe Illness

In the media, there is a saturation of the use of metaphors such as ‘warrior’, ‘fight’, ‘war’ and ‘battle’ when describing life with chronic conditions, and those living with them. And yes, sometimes, they can be powerful.

But, often the use of such descriptions can add a lot of pressure for those living with a chronic illness. And when amid an extremely severe and debilitating flare; unable to fight, or enter into a war or battle, there is the suggestion that we have somehow lost, or failed. That if we’d just ‘fought’ harder, we would be better or at least be able to cope with the current flare. Furthermore, there is an implication that the blame lies solely at the feet of the sick person.

The media often uses phrases such as ‘fighting’, ‘battle’, and ‘war’ when discussing illness and those living with such afflictions.

"When amid an extremely severe and debilitating flare; unable to fight, there is the suggestion that we have somehow lost, or failed. There is an implication that the blame lies solely at the feet of the sick person." Share on X

For those of us living with such afflictions, the use of such metaphors can make us feel weak and powerless. Particularly so, when in the middle of a powerful and relentless flare that we cannot fight or shake off. The hatred and animosity for our sick and frail bodies deepen as it becomes an enemy that must be defeated. And setting us up for a life-long battle against ourselves; one in which it is impossible as the life-long condition is just as much of a part of ourselves as anything else.

I Don’t Feel Like A Warrior

At this moment in time, no, I don’t feel like a warrior. I am struggling; barely surviving and just existing. The flare in the symptoms which accompany FND are at their worst, and in all honesty, I have never felt so bad. Words that I am sure I have used repeatedly during my journey of living with a chronic illness. But still, words, that at this moment in time are one hundred per cent accurate.

"At this moment in time, no, I don't feel like a warrior. I am struggling; barely surviving and just existing." Share on X

I have spent so much time recently in floods of tears as a result of the excruciating pain sweeping throughout my body. The trembling in the legs, dizziness and vertigo becoming more frequent and intense that there is nowhere I feel safe. And as there is nowhere, I feel safe and secure from the symptoms that are making my life hell, the anxiety that is often much a part of living with chronic illness than the forementioned symptoms has also started wreaking havoc.

The symptoms have become out of control, and its strength unconquerable. And as such, I am unable to fight or go into battle against these unforgiving forces. I am only able to endure the agonising pain and the unrelenting assault of the other symptoms that accompanies FND.

So, no, I am not a warrior. I am just a woman living with a life-long neurological condition trying to get through each day. Days where I can dodge the boulders that FND continually throws at me. And other days where I am getting crushed by them.

"So, no, I am not a warrior. I am just a woman living with a life-long neurological condition trying to get through each day." Share on X

No, I am not always a warrior. There are days where I’m unable to fight the symptoms that affect me so significantly. But when the flare passes, which they eventually do, I hope that I can fight for a better life for myself and make it a good story.

In Chronic Illness

5 Ways To Find Self-Love When Chronically Ill

February 13, 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. For February 2020, I will use the prompts to discuss five ways in which we can use to find self-love when chronically ill.

After what felt like an incredibly long month, we finally find ourselves in February. February, a month that many regards as the ‘Month of Love’ as we look towards preparations for St. Valentine’s Day. A holiday that, for many, is exclusive for couples, as they those arrange to celebrate the person they love.

Sadly, however, we rarely take the time to celebrate ourselves. Often, we never take time to love ourselves; spending more time being hard on ourselves, or running ourselves down. Many even find it difficult to love themselves at all.

"We rarely take the time to celebrate ourselves. Often, we never take time to love ourselves; spending more time being hard on ourselves, or running ourselves down. Many even find it difficult to love themselves at all." Share on X

The most important relationship will always be the one you have with yourself, which is why self-love is so important especially when living with the demands of chronic illness.

It can be hard to feel self-love when in a constant battle with your body

It can be especially challenging to find love ourselves, for example, when living with chronic illness. Why is this?

Because when living with a chronic illness, self-esteem becomes heavily impacted. When constantly sick and in pain, we too are confronted with the many negative changes that our body undergoes. As a result, it can foster a deep hatred of our bodies. We find ourselves constantly exhausted when always on edge, waiting for the next imminent hurdle or setback.

"When constantly sick and in pain, we too are confronted with the many negative changes that our body undergoes. As a result, it can foster a deep hatred of our bodies, and ourselves." Share on X

We also find ourselves unable to do many of the things we used to do. And forced to rely on others for help with often the simplest of things. So, we start to feel shame and guilt for succumbing to illness. And so not only do we not love ourselves, but it can also lead to feelings of self-hatred.

RuPaul once famously said, “If you can’t love yourself, how in the hell you gonna love somebody else.” Such profound words, but also begs the question of how we can love our life if we are unable to love ourselves first?

The above quote also begs the question on how we can love our life, especially one including a chronic illness if we are unable to love yourselves first?

So how can we start to work on self-love when living with the constant effects of chronic pain. Plus the many other symptoms that accompany life with chronic illness?

"How can we start to work on self-love when living with the constant effects of chronic pain. Plus the many other symptoms that accompany life with chronic illness?" Share on X

Way to Find Self Love When Chronically Ill: Don’t Go Looking To Comparing Yourself To Others

With the rise of social media, it is easier than ever to compare yourself to that of others. We are often our own worst enemy, as we pick ourselves apart, weighing ourselves and our achievements against others. As a consequence, we often feel that we fail to measure up to everyone else.

For those of us living with chronic illness, we are particularly susceptible to feeling low as well as feelings that we are ‘less than’ as we compare ourselves to others. As we look to our healthy peers, we think that we have failed to achieve as much as them. Or feelings of jealousy as we see them living without the limitations or obstacles that we continue to face every day.

"For those of us living with chronic illness, we are particularly susceptible to feeling low as well as feelings that we are 'less than' as we compare ourselves to others." Share on X

But, they don’t live with the limitations that we do, so comparing ourselves against them is futile, leading to feelings of self-hatred and blame. Instead we need to learn to celebrate and embrace our lives, imperfections and all. There is only going to be one you, and that is always going to be enough and deserves celebrating!

Way to Find Self-Love When Chronically Ill: Playing The Gratitude Card

When living with a chronic illness, and with a body that is continuously hurting, it can be too easy to focus on everything that is wrong with our bodies. It becomes easy to see our bodies as a prison cell, with no escape, trapped inside hell.

It can seem, especially when blighted with unrelenting symptoms that things are constantly going wrong. And as consequence we fail to see or appreciate when things are going right.

If you struggle with gratitude, a journal to note down things that have gone right or for that which make you feel good despite constant pain and sickness can be a useful exercise. Photo by Freshh Connection on Unsplash.

It can be a useful exercise, therefore, to practice gratitude by keeping a journal for when things go right — or writing down the things that make you feel good despite chronic illness. It can also help reframe our criticism with our bodies with gratitude for its hard work in fighting illness.

"When practising gratitude, the act of self-love becomes second nature. It helps us to see the blessings around us, including ourselves." Share on X

When practising gratitude, the act of self-love becomes second nature. It helps us to see the blessings around us, including ourselves. And the thoughts we hold become less focused on criticism and self-doubt to love, kindness and acceptance towards ourselves despite the unrelenting force of chronic illness and its symptoms.

Way to Find Self-Love When Chronically Ill: Joining A New Club & Engaging With A Hobby or Interest

When living with persistent and debilitating symptoms, and never feeling well, it can be easy to succumb to the illness and begin to see that it is all we are. It is often all too easy to start to see the diagnosis as the sole defining factor of our identity.

But as we do so, confronted with the increasing number of losses, self-hatred and lack of purpose also grow. By taking up a new hobby, or engaging with previous hobbies and interests, it may help increase our self-confidence. They give us an identity outside that of chronic illness and gives us a new sense of purpose.

"By taking up a new hobby, or engaging with previous hobbies and interests, it may help increase our self-confidence. They give us an identity outside that of chronic illness and gives us a new sense of purpose." Share on X

It allows us the opportunity not to have our illness at the top of our minds, and to feel like everyone else. It gives us the gift of feeling like our peers. And it also allows us the fortuity to connect with like-minded individuals; the ability to connect with others. When spending so much time at home, often alone due to illness, it is easy to become isolated. But being with others and taking part in an activity, you all have an interest in helping foster a sense of belonging.

Joining a group or taking up a hobby allows us to make connections with other like-minded people, which also helps us to make us feel better about ourselves. Photo by Perry Grone on Unsplash.

Also, when developing a hobby, especially during hardships, it can help increase self-confidence by giving you a sense of accomplishment every time we progress on that hobby. And that new sense of achievement gives us something new to feel good about ourselves. It also reminds us of the abilities that we do still have, especially when it feels that chronic illness only takes away.

"Also, when developing a hobby, especially during hardships, it can help increase self-confidence by giving you a sense of accomplishment every time we progress, giving us something new to feel good about ourselves." Share on X

Way to Find Self-Love When Chronically Ill: Invigorating Body and Soul With Simple Acts of Self-Care

In recent times ‘self-care’ has become a fashionable buzzword conjuring images of luxurious spa days, or a shopping spree for example. Although such activities can be fun and rewarding, for those of us living with chronic illness are ones which we don’t have the energy or financial means to enjoy.

Self-care doesn’t have to include luxurious spa days; it can be as simple as taking a bath, or listening to our bodies and giving it what it needs. Photo by **Luis Ruiz** from **Pexels**.

But simple acts of self-care can be as rewarding. Actions such as taking a bath or shower, followed by using a favourite lotion. Or ensuring that we are drinking enough water during the day and nourishing our body with healthy and nutritious foods.

"Self-care is taking the time to listen to our bodies, and giving it what it needs at that moment. Doing what you can for your body to make yourself feel better." Share on X

Self-care is taking the time to listen to our bodies, and giving it what it needs at that moment. Doing what you can for your body to make yourself feel better. And doing so helps to restore the balance in your relationship with your body.

Way to Find Self-Love When Chronically Ill: Ditching Self-Blame

When living with a chronic illness, there is a strong temptation to self-blame. For those of us struggling with pain and sickness, it can feel the suffering is punishment for something we’ve done wrong or retribution for a deep character flaw. Or when illness flares, we may blame ourselves for the situation, as penance for overdoing it or not taking better care of ourselves.

"An essential path towards self-love is in learning to accept ourselves and our conditions. It also means yielding self-compassion when we are left unable to do anything and celebrating those times we can." Share on X

To combat falling into the spiral of self-blame is to replace it with self-love. An essential path towards self-love is in learning to accept ourselves and our conditions despite wishing things were different. It also means yielding self-compassion when we are left unable to do anything and celebrating those times we can.

After all, there is no benefit to self-blame and only leads to a hefty emotional tax to thinking this way.

So, how do you find your way towards self-love when living with a chronic illness?

In Chronic Illness

Identity Crisis: Am I Defined By Chronic Illness?

February 1, 2020 1 Comment

The Identity Crisis: Am I Defined By Chronic Illness?

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

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

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

The Truth Is That Sometimes Chronic Illness Does Define You

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

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

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

Becoming Lost Within Chronic Illness Itself

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

Silhouette of woman in dark — During the worst times when living with chronic illness, it can be easy to become lost within it and to begin to see that is all we are. Photo by Kevin Jesus Horacio on Unsplash.

"It can be easy to become lost within chronic illness itself and begin to see that it is all we are. And so becomes a wave of grief and loss. The loss of yourself. The loss of that which defines you, as well, you." Share on X

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

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

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

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

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

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

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

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

So Am I, Or Am I Not My Illness

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

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

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

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

Redefining Yourself Through Illness and Disability

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

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

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

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

How Illness Has Made Me, Me

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

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

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

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

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

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

It has helped make me, me.

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

In Chronic Illness

Chronic Illness: A Harbinger of Shame & Guilt

January 21, 2020 2 Comments

Shame, Guilt and Chronic Illness

When living with chronic illness, there are many ups and downs. There are good times, and there are the inevitable bad, and challenging times. Times in which it feels, like illness and its coexisting symptoms, are winning, having full control of our lives. Those days that feel that the pain and other disabling symptoms will never end; and as though the ups now ceases to exist and may never return.

When continuously ravaged by cruel and relentless symptoms, it is crucial to create a safe and reassuring comfort zone. I have found such places, or they would be a safe and revivifying sanctuary if the symptoms that accompany FND would not invade them.

"I have found safe and reassuring sanctuaries, or at least they would be if the symptoms that accompany FND would not invade them, leading to feelings of being unsafe and anxiety." Share on X

The Vulnerability and Fragility of Being Sick

Even in these harmless and benign sanctuaries, the severity of symptoms has become rebellious and uncontrollable. The trembling in the legs constant and the falls happen with no warning; its appearance sudden and shocking.

Picture of woman covering her face with both hands, with another pair of hands covering both sides of her head — Shame and guilt becomes another unexpected side effect of living with a chronic illness

As such nowhere, not even my own home feels safe at this moment. And as a result, I have never felt more vulnerable. The vulnerability of being in so much pain that every step is jarring. And never knowing if the next step will be the last before my legs unexpectedly give way. A situation that often leaves me lying in a heap on the floor.

Chronic Illness: A Harbinger of Shame and Guilt

As such, these feelings of vulnerability and fragility become harbingers of shame and guilt. It seems strange to feel guilty for being ill; for something that we had no say in and have no control over. But despite this, both guilt and shame become another unexpected side effect of living with chronic illness.

"It seems strange to feel guilty for being ill; for something that we had no say in and have no control over. But despite this, both guilt and shame become another unexpected side effect of living with chronic illness." Share on X

Guilt, an often too familiar emotion experienced when becoming chronically ill. But one, that is easy to understand its origins.

The feelings of guilt arising for being a burden on others, and for not doing our share. Remorse ascending for being sick as it begins to affects others so significantly. Guilt and shame originate for the things we can no longer do, guilty for cancelling plans, and for needing constant help.

"Guilt and shame originate for the things we can no longer do, guilty for cancelling plans, and for needing constant help." Share on X

Shame, on the other hand, is far more complex. Whereas, guilt arises from feelings of regret about something you have done wrong, or for things you can’t do. Shame, on the contrary, can be felt even when we have not done anything wrong. An emotion connected more to who we are and who we believe others perceive us to be.

The Cruel Whispers of Lies By Shame About Life With Chronic Illness

When living with chronic illness, its mere existence permeates through every facet of our lives. And as it does so, the feelings of shame begin to cut to the most profound fragments of our identity. And although illness claimed us, without our consent and for which we have control, we begin to feel shame for being sick.

"Although illness claimed us, without our consent and for which we have control, we begin to feel shame for being sick." Share on X

Shame claws it’s way into our subconscious, whispering vicious lies, implying that we no longer matter, that we no longer have worth. Shame speaks words of inadequacy, throughout the darkest and most challenging days with chronic illness and its symptoms.

Shame and guilt bullies and demeans us even more so during the darkest and most challenging times with chronic illness. Photo by Kevin Jesus Horacio on Unsplash.

Often, when driven by shame, those living with chronic illness tend to push harder, ignoring symptoms, and neglecting overall health. But which only results in worsening health, symptoms further deteriorating when compounded with stress.

And once again feelings of shame and guilt that I could not get passed the symptoms, or past the feelings of being a failure for not doing so are mocking me, and poisoning it’s venomous lies into my ear pic.twitter.com/mZEmAZ3sZb
— Rhiann Johns (@serenebutterfly) January 16, 2020

"Shame speaks words of inadequacy, throughout the darkest and most challenging days with chronic illness and its symptoms." Share on X

We try and fight against these lies, but often through the darkest times, shame wins as it attacks our character. It often paints us as lazy, incompetent, unreliable and weak. It persuades us, whether real or imagined that others see us as fakers, catastrophisers, or merely an inconvenience.

Life Defined By What’s Wrong

As I lie here, disabled by the symptoms that continually inflict my body, I can say that I feel shame that I am ill.

I feel shame at the thought that the illness has gone on for so long. Shame torturing me with ideas that if only I was stronger, or had made better choices, then surely I could have overcome this affliction long before it started to dictate my entire existence.

"I feel shame that chronic illness had become so intense that my whole life had become defined by what's wrong, and not managing to overcome this affliction long before it started to dictate my life." Share on X

I feel shame that chronic illness has become so intense that my whole life has become defined by what’s wrong.

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A post shared by Rhiann Johns (@serenebutterfly)

The Shame Here and Now

And as I lie here, disabled by severe and relentless symptoms, and the limitations that currently rule my life, shame is once again whispering its vitriol lies. Often insinuating that these limitations are entirely in my head if I were only stronger than I would be able to defeat such restrictions on my life and as such claim my life back from the evil clutches of FND.

The shame further reinforced when such limitations win, and I am left unable to do or go somewhere that I had previously planned. Or the times that I had to leave suddenly after starting to feel unwell; the symptoms suddenly appearing out of nowhere. Or the times when the anxiety about suddenly becoming ill or symptoms suddenly appearing, thereby becoming victorious over my aspirations and hope.

I feel shame for those time that the positivity that I so often exude gets chipped away and instead most days during the challenging times, I battle overwhelming feelings of anxiety, despair and hopelessness. The shame and guilt are becoming overwhelming at the thought that this is now my life. And the idea of never getting better.

"I feel shame for those time that the positivity that I so often exude gets chipped away and instead most days during the challenging times, I battle overwhelming feelings of anxiety, despair and hopelessness." Share on X

And I feel shame for the number of times the symptoms of FND have knocked me down, unable to get back up.

Fall seven times, get up eight | Japanese Proverb

It is easy to remember the times when knocked down and unable to get back up by the severe and debilitating symptoms of chronic illness. And as a result, we forget the number of times when knocked down, but through strength and resilience, we immediately get back on our feet.

Shame implies fault. We need to realise that there is no fault when living with chronic illness. Instead, we need to understand that there is instead a basis for pride. Pride, as we still we stand and rise, and continue to face each day in the face of adversity. To be grateful for that which we can still do despite the many symptoms that arise each day.

In her book, Daring Greatly’, Brené Brown writes:

“Shame derives its power from being unspeakable…If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither.”

Opening up about feeling shame and guilt in my battle with FND is incredibly difficult and scary. But keeping them bottled inside, I have learned can be just as damaging. Choosing to acknowledge such feelings, no longer gives them the power, and allows me to unshackle myself from its lies.

From Shame to Self-Compassion

Perhaps my ‘Word of the Year’ therefore should be self-compassion. To reject the idea of self-blame, and instead to treat me with the same kind and non-judgemental manner that I would treat someone I loved.

In the end, we are the ones that need to validate our symptoms, listen to our bodies and take appropriate action on its behalf. To be our advocate and champion, and to realise that we are of better service to everyone else when not driven by shame, but self-compassion.

It’s challenging enough to meet the daily battles that accompany life with chronic illness without also internalising the lies that shame continuously whispers.

"It's challenging enough to meet the daily battles that accompany life with chronic illness without also internalising the lies that shame continuously whispers." Share on X

The truth that despite chronic illness making us feel weak, and ‘less than’ we are in fact, incredibly strong and resilient. We achieve incredible feats every day just by being able to get out of bed.

Every day we learn essential lessons in gratitude and grace. And even though the conditions that afflict us, from which we cannot escape, it does not have to define everything we are. It does not have to determine everything we do or the relationships with those in our inner circle.

In Chronic Illness

New Year, New Beginnings, But Still Sick

January 3, 2020 13 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. For January 2020, I will use the prompts to discuss the promise of a new year and new beginnings from the perspective of being still sick.

As I sit here, only a couple of hours before the beginning of 2020; a brand new year, hell, even a brand I am reflecting on the concept of New Years and new beginnings.

Purging The Old, To Make Way With The New

Often, the celebration of New Years and the promise of such beginnings encourages a purge.

The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don’t need, or the negative thoughts or bad habits in our lives.

"The start of new beginnings, for many, requires a purging. A purging of the rubbish lying in our drawers, useless possessions we don't need, or the negative thoughts or bad habits in our lives." Share on X

When living with chronic illness, we do so wish that we could purge this particular set of baggage. And why wouldn’t we? The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives. Illness controls how we feel to what the day ahead of us will resemble, and so much more besides.

"The impact of both chronic illness and chronic pain is significant. They dictate and control every aspect of our lives." Share on X

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When I look back to my life during 2019, I am unable to find accomplishments or stand out moments. There are no moments that I am proud of, and if asked, I would be hard-pressed to find a highlight of the year. This year has had, unfortunately, a lot more downs than ups.

On reflection, this year has seen further deteriorations in the symptoms that accompany life with FND. The year has seen an increase in the number of falls and its ensuing bruises. And more incidents of being left embarrassed after my legs have given way which has left me lying in a heap on the fall.

So yes, if I could purge the afflictions created by FND and the effects of chronic pain, then I would do so in a heartbeat. To be able to wipe the slate clean, and start an entirely brand new book as we embark on a brand new year.

Seized By Fear Anxiety and Loss of Confidence Because of Chronic Illness

I wish I could grab the opportunities and excitement that presents itself at the beginning of this brand new year. However, recently life has been seized by fear, anxiety and loss of confidence. All are culminating from an increase in the severity of the symptoms due to FND. The loss of confidence has been quite profound during recent weeks and months, as the realisation of the unpredictability of my body has become more pronounced.

"Often when living with the effects of chronic illness and its debilitating symptoms, we can be seized by fear, anxiety and a loss of confidence." Share on X

black and white photo of woman staring out of a window — Living with a chronic illness can result in being seized by fear, anger, anxiety, and loss of confidence, and so much more.

Leaving the house to even go to the most familiar places start to provoke fear and dread; never knowing when your body next is going to fail you – the worry of falling or becoming non-functional when alone, or in an unfamiliar environment.

It’s a hard and miserable way to live. It slowly becomes a life of existing and surviving rather than living. And it’s not a direction I want my life to continue.

New Year, New Perspective?

Amid a new year, and of new beginnings also provides the opportunity for opening the mind to new ways of thinking.

To make a change, I need to change the mantra ‘new year, new me’ to ‘new year, new perspective.’

Yes, last year was complicated and full of challenges and setbacks, but I survived. It may not have always seemed like it, but I got through it.

"Yes, last year was complicated and full of challenges and setbacks, but we survived. It may not have always seemed like it, but we got through it." Share on X

And to appreciate and celebrate those little achievements in the face of such challenges and setbacks. To regard these small accomplishments as small steps toward achieving bigger goals.

A journey of a thousand miles begins with a single step - Confucius

When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time, often extremely tentatively as we wait for the moment our bodies will fail.

"When living with a chronic illness and its accompanying limitations, you need to learn to live one day at a time. Often, one step at a time." Share on X

Instead of looking ahead to the next goal, or the next step, there is a need to be present. To learn to enjoy each moment, even among those quiet and banal moments in each day.

To start anew and revamp my mindset, I need to recognise and acknowledge the limitations that are a part of life with chronic illness. And the awareness that the illness may stop me from doing the things that I want in this life. The knowledge that I will experience the frustration, anxiety, anger and fear that comes from living with FND.

But I don’t have to let these limitations drive the next year, the next decade or the rest of my life. I can decide to do the things that I want, but doing it differently to accommodate the limitations imposed by FND.

"We can acknowledge the limitations caused by chronic illness, but it doesn't mean that we have to let them drive the next year. We can do the things we want, but just differently." Share on X

Envisioning The Possibilities

When living with chronic illness, it is accompanied by the many limitations that follow. But that doesn’t mean we have to stop making room for the possibilities of the future. Instead, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us.

"To survive and thrive, we need to envision the possibility that just because chronic illness is a constant presence in our lives, it does not mean that our best days are behind us." Share on X