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Brave In The Face of Chronic Illness?
In Chronic Illness

Brave In The Face of Chronic Illness?

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Brave. A small but exceptionally awe-inspiring word. It is a word describing people who run toward danger when most would choose to run from it. Brave defines those who choose to defy their fears and anxieties and jump headfirst toward danger or risk. But I’ve noticed that it’s a frequent response to a disclosure of living with a chronic illness. I’ve often heard other people calling me brave when describing my experiences living with FND. Other times, however, I feel the judged stares from people around me as I stumble around with my crutch. But still, I do not welcome praise or feel flattered given the title of brave. Instead, it grates because I feel uncomfortable and undeserving of such a title. I do not feel brave in the face of chronic illness.

"But still, I do not welcome praise or feel flattered given the title of brave. Instead, it grates because I feel uncomfortable and undeserving of such a title. I do not feel brave in the face of chronic illness." Click To Tweet

Because for me, being brave is a choice. Being brave is choosing to venture toward danger, facing fears or doing something that would be daunting to most people. But I did not choose to live a chronic illness. I did not want my days defined by severe and debilitating symptoms. I did not want things that most people take for granted to be difficult because of crippling pain or legs that continually buckle and collapse. Nor did I wish for strange neurological symptoms making going anywhere with high ceilings near impossible because of the disabling symptoms it triggers. So how can I be brave for something that I had no control or choice but to endure?

"But I did not choose to live a chronic illness. I did not want my days defined by severe and debilitating symptoms. So how can I be brave for something that I had no control or choice but to endure?" Click To Tweet

Am I Brave In The Face of Chronic Illness

Unfortunately, it often feels that I am doing what I must to survive this illness and its accompanying baggage. I don’t think I deserve admiration for living with an illness that I did not ask for or want. I have to live with enduring debilitating symptoms because I have to; there is no other choice.

"I don't think I deserve admiration for living with an illness that I did not ask for or want. I have to live with enduring debilitating symptoms because I have to; there is no other choice." Click To Tweet

I do not feel brave.

When left writhing in agony because of excruciating pain, I do not feel brave. Nor do I feel brave when left in shock after my legs unexpectedly give way. Or when too weak to be able to get up off the floor. I feel anything but brave when forced to cancel plans because my body refuses to cooperate. And I certainly do not feel brave when fatigue is so relentless that I cannot get out of bed.

"When left writhing in agony because of excruciating pain, I do not feel brave. I feel anything but brave when forced to cancel plans because my body refuses to cooperate. I never feel brave." Click To Tweet

But there is an added pressure when others describe sick people, like me, as brave and inspiring. I feel like I have to put up a front, paint on a smile and pretend everything is fine. And also act that I can handle my illness with ease.

Behind Closed Doors, I Am Not Brave

But behind closed doors, I do not handle my illness well. There is a reason why you only see me on good days; because I only let you see me on those rare days. My worst days instead spent behind closed doors. Behind closed doors where no one can see my tears when the pain is more than I can bear. Or unable to venture out because my legs refuse to function, leaving me confined to my bed. The majority of the time, it feels that this illness has taken over my body and life. And it’s these times that are my weakest moments, times when I feel anything but brave.

"There is a reason why you only see me on good days; because I only let you see me on such days. My worst days instead spent behind closed doors. Behind doors where no one can see my tears when the pain is more than I can bear." Click To Tweet
I am not brave when behind closed doors, where I writhe in agonising pain, crying just wanting relief. Or when left lying in bed while my refuses to cooperate, missing out on celebration and nights out.

There have been times where I have ‘overcome’ the limitations related to my illness and done that which the symptoms make it very difficult to accomplish. Times where I have pushed through dizziness, visual disturbances and nausea to enter a building with a high ceiling despite triggering severe and disabling symptoms. The times in which I have risen straight back up after suffering a fall. Or times in which I pushed past the pain and fatigue and did that which I previously thought impossible. These instances were perhaps my bravest times, yet still, I don’t feel brave in the face of chronic illness.

I don’t feel brave because these instances remind me that I am not like everyone else. Whenever severe and debilitating symptoms become triggered by being somewhere with a high ceiling is another reminder that I am different. And being different only makes me feel abnormal, a freak. As much as my life and my experiences are different, it still is my life. I’m not brave for just living my life, am I?

"I don't feel brave when conquering disabling symptoms. The presence of them only reminds me that I am not like everyone else. Whenever severe and debilitating symptoms become triggered, it is another reminder that I am different." Click To Tweet

Bravery: The Absence of Fear?

When I think of courage and bravery, I think of the absence of fear. But, unfortunately, my life with chronic illness consists of a great many fears. I often fear the future; the worry that my symptoms will worsen even more is never far from my mind. Even on my rare good days, days in which symptoms are mild, there is always the fear that they will suddenly resurface or worsen. Or the fear that my legs will suddenly collapse is a substantial one because it is such a regular occurrence. So, if courage and bravery is an absence of fear, I cannot be brave, can I?

"When I think of courage and bravery, I think of the absence of fear. But, unfortunately, my life with chronic illness consists of a great many fears. So, if courage and bravery is an absence of fear, I cannot be brave, can I?" Click To Tweet

I recently came across a quote from Bear Grylls. In it, he said, “Being brave isn’t the absence of fear. Being brave is having that fear but finding a way through it.” So perhaps, I am brave after all. It is true that despite all my fears I find a way through them to do what scares me anyway. Despite my fear of my legs giving way, still, I go out and do what I enjoy even if my legs do happen to relent. And despite the intense feelings of discomfort I feel due to the severity of my symptoms, still, I stay instead of fleeing and escaping the situation as my head wants me to.

I may feel anything but brave or strong. But others seem to see such qualities in me, so why am I unable to recognise them in myself? But, still, I want others to recognise bravery within me for something I have chosen to do rather than for living my life.

"I may feel anything but brave. But others seem to see it in me, so why am I unable to recognise it in myself? But, still, I want others to recognise bravery for something I have chosen to do rather than for living my life." Click To Tweet
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Mobility Aids: Signpost For Something Is Wrong
In Chronic Illness

Mobility Aid: Signpost For Something Is Wrong

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Before leaving the house and my coat and bag, I also grab my crutch with some apprehension. A crutch that has become like an ally. One that helps me keep my balance and keep me upright when my legs threaten to give out. And when symptoms are at their worst, and everything feels like a battle, this crutch has become my weapon. But unlike a superhero, it is a weapon not for fighting villains and saving the world. No, it is a mobility aid that enables me to function in the outside world.

"When symptoms are severe, everything feels like a battle; this crutch has become my weapon. But unlike a superhero, it is a weapon not for fighting villains. Instead, it is an aid that enables me to function in the outside world." Click To Tweet

But the truth is that I felt and sometimes still feel embarrassed and insecure about needing and using a crutch. Unlike superheroes whose props make them appear strong and powerful, my prop, however, makes me appear sick and weak. My need for such an aid makes me feel ashamed, embarrassed and insecure. The sight of it made me feel scared about my body and my future. And using it often makes me feel vulnerable.

"But unlike superheroes whose objects make them appear strong and powerful, my crutch, however, makes me appear sick and weak. And my need for such an aid makes me feel ashamed, embarrassed and insecure." Click To Tweet

Using it makes me yearn for the years when my illness remained invisible. I miss being able to look in a mirror and forget I was sick, even just for a second. And I especially miss being able to venture out in the world, disguising myself as being like everyone else.

Using the crutch, however, shatters such an illusion. Suddenly, I saw my crutch as a huge signpost for everyone around me that something was wrong with me. It was now suddenly visible that I was sick. A sign my body is no longer working the way it once was. So I consider it a symbol of my impairment: a very visible one. But one which I desperately want to remain hidden. 

"Suddenly, I saw my crutch as a huge signpost for everyone around me that something was wrong with me. It was now suddenly visible that I was sick. A sign my body is no longer working the way it once was." Click To Tweet

Using A Crutch Made People Notice Me; But Not In A Way I Want To Be Noticed

I was worried that by using it, people would pity me or ask me personal questions. Worried that some people would see the crutch, and only the crutch and not the person behind it.

I was also afraid that a crutch would make me look unfashionable. Accessorising my outfits with jewellery or a scarf, for example, is something I enjoy, but this was one accessory that I didn’t like or want. Instead, I saw it as something that made me stand out, look different from everyone else. Just not how I would like others to notice me.

"Accessorising my outfits is something I enjoy, but this was one accessory that I didn't want. Instead, I saw it as something that made me stand out. Just not how I would like others to notice me." Click To Tweet

Suddenly the girl staring back at me is no longer recognisable from the one before. No longer is my own body represented in the images shown in glossy magazines, on television or even on film. There are no stylish role models providing examples of how to make a crutch look cool. The lack of representation of mobility aids in the media only adds to my feelings of being different. And also a sense of uncertainty of where and if I belonged.

Looking through my photographs, I notice that not many include me with my crutch.  Whenever, I see a camera my first instinct is to hide it, hide the evidence of my sickness and disability.
"There are no role models providing examples of how to make a crutch look cool. The lack of representation in the media only adds to my feelings of being different. And also a sense of uncertainty of where and if I belonged." Click To Tweet

When we see people using mobility aids in the media, it is usually of older people. However, needing and using one myself often makes me feel old before my time. And I often worry about the judgements of others; people assuming that I’m too young to be needing one, and therefore must be faking. Feeling the constant stares and scrutiny when out only seem to confirm such fears.

Mobility Aid: Disability on Display

I am hyper-aware of the people around me. I can feel people’s gazes on me as they look me up and down as if trying to identify my affliction. Just recently, as I sat waiting for a pedicure at a local salon, I noticed a woman staring at me. It made me feel like I and my disability were on display for everyone to see and scrutinise. Sometimes people even approach me asking, “Oh no, your poor thing, what happened to you?” It’s as if people believe that I am using the crutch due to an injury, expecting a funny anecdote on how it happened. But instead, the need for such an item is because of a long-standing neurological condition and one that requires other mobility aids than just my crutch.

"I feel people's gazes on me as they look me up and down as if trying to identify my affliction. It often makes me feel like I and my disability were on display for everyone to see and scrutinise." Click To Tweet

I have not yet found a way to reply to such a question without making others feel awkward. When I reply and tell them the truth regarding my neurological condition, there is a deathly silence, not knowing how to respond. And I feel uncomfortable, as there are times when I don’t want to share details about my disability. Sometimes, I want to forget that it exists, even if my symptoms never let me forget it.

For somebody who was more non-disabled than I am now, introducing a crutch represented losing something that I once took for granted. I had to accept that I could no longer move as freely as I once did. I could no longer rely on my body to keep me safe and free from falls or from the evidence they leave behind. Every new bruise or cut is a stark reminder of the deterioration of both my mobility and balance.

"Introducing a crutch represented losing something that I once took for granted. I had to accept that I could no longer move as freely as I once did. I could no longer rely on my body to keep me safe and free from falls." Click To Tweet

Such deteriorations feel like a personal failure like I haven’t tried hard enough to get better. And my newfound dependence on a crutch, so too, felt like a personal failure. I thought that a future of using a mobility aid permanently was giving in to my condition and giving up. It felt that I was saying goodbye to the person I once was and the life I lead and opening the door to something new and unsettling.

A Newfound Dependence on A Mobility Aid: A Personal Failure?

Society perpetuates the idea that a strong and healthy body is the ideal. And as a result, disability and illness are seen as weakness, as something lesser than. My embarrassment and insecurity of needing and using a mobility aid that identifies me as such is undoubtedly evidence of my internalised ableism. I internalised everything society has taught me and thought that using a crutch and other mobility aids made me weak.

"My embarrassment and insecurity of needing and using a mobility aid that identifies me as such is undoubtedly evidence of my internalised ableism. I thought that using a crutch and other mobility aids made me weak." Click To Tweet

What My Crutch Has Given Me

What I don’t often consider, however, is the positives that using mobility aids have brought into my life. For example, my crutch has meant that I no longer have to rely on the support of another person to help keep my balance. My crutch gives me much more stability, allowing me to help maintain my balance and stopping me from toppling over.

Using a crutch might make me insecure at times, but using it has made going out much less of a hassle and without the worry of falling over or losing my balance. Image by Karolina Grabowska from Pixabay.

It has saved me the red-faced embarrassment of being left face down on the ground plenty of times by now. When your disability is invisible, people constantly question your need for things such as use for an accessible toilet or a blue badge, for example. Mobility aids, however, often serve as a shorthand for being disabled, and how that there is something wrong and my need for assistance is therefore legitimate. It sometimes feels like a huge weight has lifted when I no longer have to prove my disability and illness.

"Mobility aids, however, often serve as a shorthand for being disabled, and how that there is something wrong and my need for assistance is therefore legitimate. No longer have to prove my disability and illness." Click To Tweet

Overall, though, my crutch has gone from something that brought me shame and uncertainty to something that has enabled me to live more of a life than I did before. And by accepting and embracing my crutch, I am by extension accepting and embracing myself.

When I go out, the first thing I grab is my bright pink and very cool crutch. No hesitations.

Mobility Aids: Signpost For Something Is Wrong
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Sometimes, I Don't Want To Talk About It
In Chronic Illness

Sometimes, I Don’t Want To Talk About It

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Do you ever listen to music and instantly connect with the lyrics of a song? Lyrics that reflect your own life and experiences that it feels it was written just for you? I recently had such an experience. Sitting upright in bed with my laptop on my lap, ready to work, I selected a random playlist on Spotify. A soft relaxing melody started, and the dulcet tones of Dina Carroll began. As she sang, “I Don’t Want to Talk About It,” a shiver ran up my spine. It resonated with me, as I often, too, don’t want to talk about it. Sometimes, I don’t want to talk about my health condition or disability.

It might seem surprising for someone who has spent much time talking about their health condition and disability online. Many would assume that I am completely comfortable about it since I share so much about it on social media. But in fact, it couldn’t be further from the truth.

The truth is, I am not confident or comfortable talking about my health condition or disability, particularly offline. It has and still can be a struggle for me to express the despair said ailments have on my life. Nor do I find it easy to articulate the full extent of the pain I constantly experience. Or the gravity of the other symptoms that are constantly with me. It can be hard to put in words just how much control and influence such symptoms have on every second of every day.

"I do not find it easy to articulate the full extent of constant, debilitating pain. Or the gravity of the other symptoms that are constantly with me. It is hard to put in words how much control such symptoms have on every day." Click To Tweet
I may write and talk about my health and disability a lot online, but still, there are times when I don’t want to talk about it. Photo by Kat Jayne from Pexels

The Struggle of Opening Up About My Health Condition & Disability

Although only diagnosed a few years ago, I have been experiencing symptoms since a very young age. It feels that severe aching pains in the legs, dizziness and weakness have always been with me. However, as such symptoms started at such a young age, I could not articulate what I was experiencing. I was much too young to be experiencing such things. And much too young to have the appropriate language to describe what it was I was experiencing or how such symptoms made me feel.

As the years progressed, I noticed that other children seemed to be more carefree than I was. They ran around unbothered by strange, unusual symptoms, unlike me. Me, who struggled with balance and pain and stiffness throughout my legs. And me who felt dizzy and off-balance, especially in enormous places with high ceilings. But other children seemed to do things that I found difficult with great ease. Other children unburdened by things that were a heavy load for me to carry.

Wanting To Hide My Disability Due to Embarrassment and Shame

I was afraid of acknowledging and speaking openly about what it was I was experiencing. I was afraid that others would see me as being different or odd.

"Sometimes I don't want to talk about my health condition or disability for fear of being seen as different or odd." Click To Tweet

As time went on and my condition progressed, becoming worse and more evident, awkward situations became part of my norm. Tripping over, falling over straight onto my face, and legs collapsing from under me often leave me red-faced with embarrassment. Such incidents leave me feeling embarrassed about my disability, leaving me wanting to hide it even more.

"Tripping over, or falling over straight onto my face, often leave me red-faced with embarrassment. Such incidents leave me feeling embarrassed about my disability, leaving me wanting to hide it even more." Click To Tweet

So, when I can, I do my best to hide my disability. I desperately want to fit in, in a world where everyone sees me as being different. But by talking about my health openly, I worry that it would only encourage more questions, more doubts and confusion, and more stares.

"When I can, I do my best to hide my disability. I desperately want to fit in, in a world where everyone sees me as being different. But by talking about it, I worry that it would only encourage more questions, and more stares." Click To Tweet

I’m Afraid Of Other People Only Seeing Me As The ‘Sick Girl’

Lately, I have noticed that more and more of my conversations centre around my chronic illness and ensuing disability. As a result, people are always full of questions; “What is your diagnosis? “How does your diagnosis affect you? “How have you been feeling lately”. Or constantly being asked what happened to my leg. As if my using a crutch results from an injury and not because of a disability. The answers to such questions have become ingrained into my mind, almost like a script. Still, it can be exhausting to repeat the same information many times over.

When meeting new people, my neurological condition is often the first item on the agenda. I know that people do this out of concern or worry. Or perhaps in an attempt to make me feel less self-conscious about my constant need for a mobility aid. But instead, I worry that my whole self-identity is that of the ‘sick’ girl, and that is how others see me.

"Sometimes I don't want to talk about my chronic illness or disability because I worry that by doing so, my whole self-identity is that of the 'sick' girl, and that is how others will see me." Click To Tweet
I sometimes don’t want to talk about my disability because I’m worried that people will it, before they see me as a person.

I know that I am so much more than my diagnosis and disability. Still, I worry that by talking openly about my life with FND and my disability, I only add to the impression that they define me. Or the most important thing that makes me me. By speaking so publicly about my diagnosis, I worry that they will become the only thing people see when they look at me.

I am so much more than a label. I want people to see me the person, and not me, the patient.

"I am so much more than a label. I want people to see me the person, and not me, the patient." Click To Tweet

Sometimes I Don’t Want To Talk About My Disability

Although I have become better at accepting and discussing my neurological disorder and subsequent disability, I still have bad days. Moments that I wish I could be like everyone else and didn’t struggle with mundane things that come naturally to everyone else. I yearn to be just your average 30-something with a career and family. I wish that I didn’t have to plan everything and ensure I have assistance at all times.

There are times I want to hide or disguise my disability and mobility impairment because I have and still can feel different and left behind because of it. I want to feel normal. And I want to put those times and feelings to the back of my mind and focus on things that make me forget. I find films, book and the latest TV programmes much more interesting to talk about than my disability.

"There are times I want to hide my disability because I have and still can feel different. I want to feel normal. And I want to put those times and feelings to the back of my mind and focus on things that make me forget." Click To Tweet
There are times when I want to hide my condition and disability because I want to feel normal and pretend I’m like everyone else, at least for a little while. Photo by Daria Shevtsova from Pexels

Sometimes I don’t want to talk about my disability because doing so only reminds me of the struggles, challenges and obstacles I constantly face. Talking about them reminds me of all the hurdles I still face, which is scary and overwhelming. At least, by talking about something else, I can forget they even exist for a little while.

"Talking about my illness and disability reminds me of all the hurdles I still face, which is scary and overwhelming. At least by talking about something else, I can forget they even exist for a little while." Click To Tweet

So, Why I Do I Choose To Blog and Talk About It

It may sound hypocritical for a person who chooses to blog about their chronic illness and disability to write about why they often don’t want to talk about it. So why do I? I share my experiences of living with FND and my disability to help others feel that they are not alone. There are plenty of people out there who feel lost, broken, and alone because of this misunderstood diagnosis. I am all too familiar with such feelings. I experienced them during those years, searching for what wrong with me. Still overwhelmed by these feelings due to the frustration over the lack of help and support out there for those living with FND. So, I write so that people going through what I did might find comfort and reassurance in my words.

I also want to, and hope I do, show people that it is possible to overcome challenges. And possible to enjoy things that you may think not possible even when overwhelmed by debilitating symptoms.

I am ironically talking about chronic illness and disability by telling you that there are times I don’t want to talk about it. There are times when I want to hide my health condition and disability. And times when I’ll happily talk about it with you.

Sometimes I Need A Break From Talking About My Health and Disability

But sometimes, I need a break from talking about my health condition and disability. I need a break because it sometimes feels that so much of my time is spent talking about it. Sometimes I would rather spend my time talking about the weather, or what I am reading or what was on television last night.

"Sometimes, I need a break from talking about my health condition and disability. I need a break because so much of my time is spent talking about it. I would rather spend my time talking about books or what was on TV last night." Click To Tweet

There is so much more to be than FND or my disability. Sometimes I’d rather my focus be on those things rather than dwelling on illness and impairment.

Sometimes I want to be me and not me that has something wrong with them.

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Toxic Positivity: Positivity Is Not a Magical Cure
In Chronic Illness

Toxic Positivity: Positivity Is Not A Magical Cure

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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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet
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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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

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

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

"Yes, positivity can make the experience of living with a chronic illness easier to bear, but it is no magical cure. But by making it out that it is, is what turns positivity toxic." Click To Tweet
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Chronic Illness: A Battle of Mental Health
In Chronic Illness

Chronic Illness: A Battle of Mental Health

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. As World Mental Health Day fell in October, I decided to use the prompts to discuss chronic illness and mental health.

Chronic Illness: Directing a Battle Concerning Our Mental Health

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

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

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

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

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

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

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

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

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

"It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms." Click To Tweet

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

It is easy to fall into despair and hopelessness, even depression when experiencing a surge of unrelenting and debilitating symptoms—photo by Yuris Alhumaydy on Unsplash.
"As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before." Click To Tweet

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

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

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

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

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

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

As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety.

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

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

Disappointing Myself Because of Limitations 

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

"As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the new limitations of my body and health." Click To Tweet
girl crying while touching glass window
Living with disabling symptoms can result in anxiety about a lot of things, but especially about going out as we can never know when symptoms are going to appear. It can lead to a lack of confidence, isolation and depression.

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

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

Switching Up Thoughts of What Came First 

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

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

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

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

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

Chronic Illness: Forming A Battle Between Physical and Mental Health

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

When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me
"According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants." Click To Tweet

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

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