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Deterioration: A Threat That This Isn't Over
In Chronic Illness

Deterioration: A Threat That This Isn’t Over

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As I stare out of my window, I witness the seasons changing. I saw as the leaves fell from the trees outside. The ground suddenly became a beautiful canvas of colours with orange, red, yellow, and green hues. The days gave way to cooling temperatures and darkening afternoons that stretch long into the night. And I have watched as heavy rain has pelted against my window panes. We can reconcile such changes by switching on cosy lights, wrapping up in chunky knits, or sipping a hot drink. But, sometimes, we cannot so easily accommodate change. Instead, change can be confronting and heart-wrenching for those living with chronic illness, specifically when deterioration strikes. The sudden appearance of symptoms or worsening ones can feel like a chilling threat that this isn’t over.

When it starts getting dark early, I like to accommodate such a change by using cosy lights. But we cannot so easily adapt to changes in symptoms due to a chronic illness in our lives.
"Change can be heart-wrenching for those living with chronic illness, specifically when deterioration strikes. The sudden appearance of symptoms or worsening ones can feel like a chilling threat that this isn't over." Share on X

Deterioration: A Threat That This Isn’t Over

The change and abrupt worsening of symptoms can develop suddenly, without warning. I know that it catches me completely off guard when it happens to me. It reopens the wound that living with a chronic illness has created, like a scab breaking open again and again. And the longer the worsening of symptoms lasts, the more it bleeds. Anxiety once again seeps into every facet of my life. During this recent deterioration, I had hoped that it was a blip. A flare that would dissipate as quickly as it appeared. However, the days turned into weeks and the weeks into months. I then had to consider the awful possibility that this deterioration was permanent. An old mantra tells us, ‘This too shall pass,’ but some storms sadly last forever when living with chronic illness.

"An old mantra tells us, 'This too shall pass,' but some storms sadly last forever when living with chronic illness." Share on X

Dizziness, pain, trembling and weakness in the legs, and vertigo are the main symptoms accompanying my life with FND. The majority of which are constant, debilitating, and affects every facet of my life. But although such symptoms have a profoundly negative impact on my quality of life, I have gotten used to them. I have found ways of coping with them and consolidating them as part of my life.

Deterioration: Losing My Grip On My Identity

But since all the symptoms have worsened, and some significantly so I have begun to feel adrift. I find it challenging to be buoyant by things that once helped me stay afloat. As symptoms become wild and uncontrollable, it is easy to feel like you’re losing control. The longer it continues, the more you become limited by persistent, unyielding symptoms. The thread of who you were and what you could do slowly becomes unpicked. It is easy to feel like you’re losing grip on your identity. And, how you think about yourself and your body changes and morphs into something darker and antagonistic.

My body has not fallen victim to any horrible accidents nor experienced significant injuries that could explain my sudden deterioration. There are no definite reasons for me to blame for my sudden less-abled body, making it all the more difficult to accept.

Compared to how the symptoms are now, they were previously a moderate annoyance. Now they behave like a toddler having one hell of a temper tantrum. Before now, I could not imagine how the pain I was experiencing could get any worse; it already felt raging and out of control. I soon learnt, however, that, unfortunately, the pain can indeed become worse.

Defeated by the Want To Get Better or Stronger

With an intensity I have never experienced before, the pain demands attention. A hot, burning pain radiates down my entire spine. And a severe tingling sensation shoots down both legs while sweat drips from my hair, trickling down my neck. The trembling in my legs is so intense that it feels like an earthquake is happening beneath my feet. And the falls that already punctuate much of my life have also increased with great intensity. Although they have not generated significant injuries, falls have worsened the pain I’m already in, much to my frustration. My legs constantly feel so weak, so much more fragile than before. So, standing and walking feels like even more of a precarious endeavour.

I so desperately want to get better, to see signs of improvement. But such a wish is one even the most potent genies cannot grant. Instead, getting better has become a fight that I cannot win. But I’ve tried, giving it my all. To feel better and stronger, I pushed through pain and fatigue. I have battled excruciating pain during gruelling physiotherapy sessions. I have made the appointments, seen countless doctors and specialists and taken the pills. But despite my great effort and my dogged determination, I remain defeated.

"I so desperately want to get better, to see signs of improvement. But such a wish is one even the most potent genies cannot grant. Instead, getting better has become a fight that I cannot win." Share on X

As The Intensity of Symptoms Expands, My World Shrinks

This sudden, unexpected deterioration has been overwhelming, demoralising and life-changing. As the presence and intensity of such symptoms expand, my world shrinks, my self-confidence obliterated beyond repair. Its broken pieces lay at my feet, ready to be rebuilt. It is easy to lose self-confidence in the villainous evil of chronic illness. It is easy to distrust resent a body that constantly fails you. And it becomes effortless to hate a body that continually embarrasses you as your legs regularly gives way.

"It is easy to lose self-confidence in the villainous evil of chronic illness. It is easy to distrust resent a body that constantly fails you. And it becomes effortless to hate a body that continually embarrasses you." Share on X

I have found that my self-confidence diminishes every time my legs give way. My positive self-image vanished as I was left flat on my face on the ground below. The more such incidents happen, the more the anxiety increases. Instead, it becomes easier to avoid situations where such events occur. And as the intensity of symptoms is still severe, it can be easier not to try; to not try and defy such severe, relentless symptoms in case of making them worse or our already fragile confidence.

Most days, I feel lost, obscured by pain and other debilitating symptoms affecting my present. I can’t help fearing the future, worried that worse will come. Photo by Annie Spratt on Unsplash

My New Comfort Zone; Safe but Limiting

For me, most of my time outside of the house now involves sitting in cosy coffee shops. The trembling and weakness have become so intense and severe that they consistently feel they will give way imminently. And more often than not, they do. So now, I have lost confidence with anything involving walking or standing. Now, things like shopping and exploring have become precarious and unsafe, both of which I used to enjoy.

Some days I feel lost, obscured by pain and debilitating symptoms that dominate my present, and I fear my future. But it is not only self-confidence I have lost; it feels that this sudden deterioration has left a blemish on my self-identity.

"Some days, I feel lost, obscured by pain and debilitating symptoms that dominate my present, and I fear my future. But it is not only self-confidence I have lost; this sudden deterioration has left a blemish on my self-identity." Share on X

Worsening Symptoms Has Left a Blemish on My Self-Identity

Who I was and the life I led has buckled underneath the heavy burden of illness. The girl who once wished for adventure in the great wide somewhere exists no more. Now such endeavours feel insurmountable as I continue to be hampered by severe, unyielding symptoms. Staying close to home has become challenging and testing, so the thought of going further afield feels impossible.

"Who I was, and the life I led has buckled underneath the heavy burden of illness. The girl who once wish for adventure in the great wide somewhere no longer exists." Share on X

I recently decided to cancel a cruise with my family, which was a difficult and heart-breaking decision to reach. But, I was struggling to cope even at home with such demanding symptoms. I knew that I definitely couldn’t if away from the comfort and familiarity of home. The very idea of a holiday I found painful. It was and is an agonising reminder of the permanence of chronic illness. Although it allows the opportunity to escape the monotony of everyday life, I cannot leave behind chronic illness’s unrelenting symptoms. Because chronic illness never takes a holiday. Chronic pain never takes a holiday. And disability never takes a holiday. Instead, I would have no choice but to pack them all and take them with me.

"Although a holiday allows the opportunity to escape the monotony of everyday life, I cannot leave behind chronic illness's unrelenting symptoms. Because chronic illness never takes a holiday." Share on X

Although I know my decision not to go was the right one, my head still makes me doubt myself. The dark thoughts that accompany the depression proclaim that I’m weak. And my head leaving me to believe that I am letting my illness win by not going.

Grief and Despair; Unwelcome Visitors Once Again

It feels that this sudden deterioration has thrust me into the stormy waters without a life jacket. Its powerful waves pull me under into the dark, murky depths, unable to break free. Drowning in feelings of sickness, symptoms continuing their strangling hold on my life. In my despair, I want nothing more than to be better. To finally feel normal, unfettered from the constraints and restrictions from illness. But to my horror, I instead find myself becoming worse. It seems that I am becoming weaker and more disabled by illness and its symptoms than before.

"In my despair, I want nothing more than to be better. To finally feel normal, unfettered from the constraints and restrictions from illness. But to my horror, I instead find myself becoming worse." Share on X

Grief and despair have become part of my journey living with a chronic illness once again. Floods of tears flow from my eyes, especially as I continually lose the battle with my body. The nights are long, battling with persistent, unmanageable symptoms. Dark, depressive thoughts quickly surface, wanting to give up, not knowing how much more I can endure. Any hope that I once held onto dramatically dwindles as I continue to be defeated by pain and illness.

"Grief and despair have become part of my journey living with a chronic illness once again. Floods of tears flow from my eyes, and the nights are long, battling with persistent, unmanageable symptoms." Share on X

The only hope I can hold onto is that although the deterioration I am experiencing isn’t temporary, the painful, turbulent emotions accompanying it are. I have adapted to severe, debilitating symptoms before, learning to consolidate them as a part of my life. If I have done it before, I hope I have the strength to do it again.

"The only hope I can hold onto is that although the deterioration I am experiencing isn't temporary, the painful, turbulent emotions accompanying it are." Share on X
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Pain or Painkillers: A Difficult Decision To Make
In Chronic Illness

Pain or Painkiller: A Difficult Decision To Make

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I lie here in bed, unable to discern anything but pain. A burning, searing pain travelling up and down my back and legs. Pain that proves to be both unyielding and punishing in its intensity. Another flare, one of many I have experienced over the years of living with chronic pain. Once again, finding myself held hostage by the betrayal of my body. As I lie here, besieged by gruelling and unbearable pain, I have to decide: pain or painkiller.  A choice that is not an entirely easy one to make.

"I find myself held hostage by the betrayal of my body. As I lie here, besieged by gruelling and unbearable pain, I have to decide: pain or painkiller.  A choice that is not an entirely easy one to make." Share on X

Pain Or Painkiller: The Dilemma

It seems so simple. You feel pain, so you pop a couple of painkillers to quash it before it becomes unmanageable. But when living with constant debilitating pain, the answer is not always so straightforward. Although they look unthreatening, those white pills can often cause unpleasant side effects that can be just as bad, if not worse, than the pain itself. Many a time, I have experienced intense, burning pain in my stomach. Burning pain that feels as if my stomach lining has eroded by the toxicity of the pills I have taken.

"Although they look unthreatening, those white pills can often cause unpleasant side effects that can be just as bad, if not worse, than the pain itself." Share on X

Even if I am lucky enough to dodge such side effects, there is a chance they will not even work. From my viewpoint, painkillers rarely kill the pain; if I’m lucky, the pain will lessen slightly, but it never surrenders the way I wish it would.

"In my experience, painkillers rarely kill the pain, if I'm lucky, the pain will lessen slightly, but it never surrenders the way I wish it would, the way I need it to." Share on X

A fuzzy cloud descends in my head when I have taken painkillers to help me cope with the relentless pain. But the side effects are not only limited to unpleasant physical sensations. One that makes it extremely difficult to think or concentrate. When under the influence of these drugs, I cannot focus on things I enjoy. I’m unable to read, write or even follow the plotlines of TV shows or films. And I question whether they are a friend or foe. 

Pain Or Painkiller: A Catch-22

The decision to take painkillers is, therefore, a catch-22 situation. On the one hand, I can reject pharmaceutical help to encourage the pain to cease. To offer me rest and peace from the torturous clutches of chronic pain. Or, I can choose to swallow these pills only to find that they have done little to alleviate my suffering. Or, even worse, trigger intense side effects that leave me feeling even more ill. Whichever path I take, it feels that I lose either way. And again, I question whether medications are an ally or an adversary. 

"The decision whether to take a painkiller is a catch-22. Whether I choose to endure the pain or take a painkiller and face the side effects, it feels that I lose either way. I question whether they are an ally or an adversary." Share on X
pain or painkiller
Pain or painkiller feels that it is a constant question when living with a chronic illness where the pain is also continuous—photo by Anna Shvets from Pexels.

As my hand reaches toward the packet of drugs, a voice whispers, reminding me of the evils of such opiates. But my hesitancy to swallow the pills that supposedly offer relief from unbearable pain is not only because of its punishing side effects. Every day there are stories in newspapers or television documentaries of the damage they can cause to the liver. But my hesitancy to swallow the pills that supposedly offer relief from unbearable pain is not only because of its punishing side effects. Or the likelihood of becoming overly reliant or dependent on them, painting those who require continuing pain relief as addicts. Or how we need to take more and more drugs to kill the pain until eventually, nothing will help liberate us from the suffering. 

Chronic Pain and Pill-Shaming

Like many others, I shame myself for even needing and taking painkillers. I often stop myself from taking pills that could help extricate myself from the pain I am experiencing. For the most part, I only take painkillers as a last resort. Firstly I try everything I can think of to help alleviate my suffering without relying on pills. Popping a pill is almost seen as lazy or an easy option to address pain. Such thinking implies that those who do, do not work hard enough to help ease our suffering. Like so many others, I have often been at the receiving end of “Have you tried…? 

"I often stop myself from taking pills that could help extricate myself from the pain I am experiencing. For the most part, I only take painkillers as a last resort, shaming myself for needing or taking them." Share on X
Painkillers offer a small slice of normality, but it’s never for long, and soon my reality of excruciating, unbearable pain begins anew – photo by Andrea Piacquadio from Pexels.

I hate having to rely on medications to be able to function. I hate how they offer me a slice of normality, only for illness to snatch it away again. Not being in pain (or at least not in as much pain) is almost like living in an artificial reality. I know that this pain-free existence is not my reality, aware that it will soon end. Soon, this peace and tranquillity will end, and my reality of excruciating pain, dizziness, fatigue and sweeping weakness will begin anew. 

" I know the pain-free existence that painkillers offer is not my reality, aware that it will soon end. Soon, this peace will end, and my reality of intolerable pain and suffering will begin anew." Share on X

But when the pain becomes chronic, never-ending and unyielding, it is unhealthy not to treat it. The dark tentacles of chronic pain can coil themselves around every aspect of our lives. It affects not only how we feel physically but also how we feel mentally. Depression and anxiety can be consequences of living with untreated chronic pain, leading to even more pain. Living with chronic, relentless pain can also affect what we can do, a list that can become significantly shortened at its worst. 

But Sometimes Pain Needs To Be Treated

Pain is not something that we should have to negotiate. When we are at the mercy of relentless, unyielding pain, sometimes our bodies need a break, a respite from it. Yes, the side effects of medications are a hell of their own. But they do provide a reprieve from the pain’s intensity. It may be short, much shorter than we would wish, but it can be a welcome relief. A break from its intensity often allows me the opportunity to recoup some of the lost hours of sleep that pain has stolen from me. And it provides me with a short window to read or catch up on the television programmes that I have missed because the pain has impeded my concentration. 

"Pain is not something that we should have to negotiate. When we are at the mercy of relentless, unyielding pain, sometimes our bodies need a break, a respite from it." Share on X

I have noticed great benefits on the days when painkillers have been a part of my pain management. I have done more than wrestling with pain, wasting my day away.

Yes, the harsh side effects and its other disadvantages can seem that painkillers are a foe, something we must avoid at all cost. But pain, too, is a villain. One that impairs our quality of life, altering every facet of our life, sucking the very life out of us. 

There doesn't have to be a choice between pain or painkiller
But painkillers can give us a better quality of life, allowing us to do and enjoy more than spending our days wrestling with the pain. By being careful with dosages, etc., we should no longer choose between pain or painkiller. Photo by Anna Shvets from Pexels
"Yes, the harsh side effects and its other disadvantages can seem that painkillers are a foe, something we must avoid at all cost. But pain, too, is a villain. One that impairs our quality of life."  Share on X

Painkillers are an ally, one that can grant relief and support in times of great need.  And no longer does it have to be a choice between pain or painkiller.

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Reliving Heartbreak: Life with a chronic illness
In Chronic Illness

Reliving Heartbreak: Life With A Chronic Illness

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“The true heartbreak of living with chronic illness is being forced to relive the worst moments of it over and over again”

I am an avid reader. I love nothing more than to sit and devour the latest bestsellers. Unfortunately, at times disabling symptoms that accompany chronic illness prevents me from doing so. Blurred vision, dizziness and intense, crippling pain all make reading near impossible. But still, I am grateful for the times I able to find pleasure in the pages of a good book. Recently, I have been able to find joy in reading once again. At the moment, I am seemingly choosing stories of love, romance, and heartbreak. Much of the books I have selected recently seem to revolve around heartbreak, much to my bewilderment.

Perhaps I gravitate towards such books because I resonated with their themes. These books resonated with me as I am no stranger to heartache. My heartbreak may not be the same as those I read about in the books stacked on my bedside table, but I do often experience it. My heartbreak comes not from a break-up or losing a job, or a fallout with a friend. No, instead, my heartbreak stems from living with chronic illness.

"My heartbreak may not be the same as those I read about in the books stacked on my bedside table, but I do often experience it. My heartbreak stems not from a break-up but from living with chronic illness." Share on X

Heartbreak is often temporary. A brief, intense sadness in which we allow ourselves to wallow in self-pity, a tub of Ben and Jerry’s ice cream and the cheesiest romantic comedies. But when living with chronic illness, we are forced to relieve these moments of heartbreak over and over again.

Living with chronic illness is heartbreaking

Life with a chronic illness is reliving heartbreak over and over again.

"Life with a chronic illness is reliving heartbreak over and over again." Share on X

The Heartbreak of Regularly Losing Your Freedom

It is heartbreaking knowing that this freedom from the worst symptoms accompanying chronic illness is only brief. As much as I enjoy a reprieve from the worst of my symptoms and enjoy the pleasure of reading and able to do what I want when I want, I know it won’t last. Soon, and sooner than I would choose, my entire existence will become besieged by crippling and disabling symptoms. And once again, I will find that I cannot participate in activities that bring me pleasure and joy, such as reading.

"Soon, and sooner than I would choose, my entire existence will become besieged by crippling and disabling symptoms. And once again, I will find that I cannot participate in activities that bring me pleasure such as reading." Share on X

But freedom is something that I can never truly have. This illness has locked me inside a sort of prison, now trapped within a body that no longer feels like my own. Imprisoned by a deep sense of isolation, everyone around me cannot understand the pain that dominates my being.

The isolation worsened by physical isolation as this illness has continued to prise people from my life. Or it has been a decision made by so-called friends as they failed or didn’t want to understand my illness and the devastating effect it has on my life. Even worse has been the suspicion that people in my life to the validity of my condition. Especially people who know me well and should know that I would never lie or contemplate faking being unwell. When I should be out having fun and living my life to the fullest, it is heartbreaking to find myself with no social life and very few friends.

The Scariest and Longest Ride That Is Chronic Illness

Chronic illness is like the scariest rollercoaster ride; it’s one that I desperately want to get off but cannot. Just like experiencing a flare, you desperately want for it to end. Deep down, you know that it will eventually end, maybe not today, tomorrow, or even next week, but it will end. And when it does stop, you know the ride will soon start all over again.

It is especially heart-rendering, never knowing what caused this current flare or why it’s happening; it just is. And there is nothing that I or anyone else I or anyone I can do to stop it. Instead, I am a victim to it, forced to withstand it.

"It is especially heart-rendering, never knowing what caused this current flare or why it's happening; it just is. I am a victim to it, forced to withstand it." Share on X

Every morning I wake, hoping things will be different. Each morning I hope that symptoms have miraculously eased during the time I spent asleep. And hoping that today the limitations will alleviate, allowing me some freedom from the constraints of FND. But every morning, I feel sad, heartbreakingly disappointed, and greatly disappointed that nothing has changed. Still, symptoms wreak havoc upon my body and limiting what I can do with my time.

As time rages on, so has the symptoms that affect me significantly every day. The hope that such symptoms will ease or retreat gradually dissipates. Decline not improvement seems to embody my experience of living with a chronic condition. The worsening of symptoms continually chips away at what I can do, eroding my self-confidence and identity. It’s heartbreaking to discover the remnants of what we used to be able to do, our identity, and our hopes and dreams in the rubble of our life before illness demolished it.

"It's heartbreaking to discover the remnants of what we used to be able to do, our identity, and our hopes and dreams in the rubble of our life before illness appeared and demolished it." Share on X

The Heartbreak of Losing Your Body and Self to Pain and Illness

Now, my body or my life no longer seems to be my own. Instead, my body now belongs to the limitations forced upon me by symptoms that I cannot control and certainly cannot extinguish. My life now belongs to the opportunities I cannot accept because my body refuses to cooperate. My body forever tethered to the medications that allow me to function. Pills that I don’t want but need to survive the ferocity of the symptoms that are always present.

My body no longer feels like my own
"Now, my body or my life no longer seems to be my own. Instead, my body now belongs to the limitations forced upon me by symptoms that I cannot control and certainly cannot extinguish." Share on X

It is heartbreaking when I realise that such good days, days where the symptoms are mild and manageable or even non-existent, are scarce. It breaks my heart that most of my days are ones filled with excruciating pain, never-ending fatigue, and weakness that refuses to cease.

Not being in pain seems so far removed from my reality that it feels like it only exists in fairy tales. Trying to remember the feeling of not being in pain or besieged by other debilitating symptoms is like trying to recall the feel of the warm sun on your skin during the cold, dark months of winter. It’s trying to remember the excitement of being on holiday when back home amid the mundane, everyday life.

Heartbreak and chronic illness
It is heartbreaking that every moment of my life is greatly affected by severe, debilitating symptoms. It is heart-rendering that I can no longer remember how it feels not to be in constant, excruciating pain, or even what it is to be healthy. Photo by Ivan Samkov from Pexels
"Not being in pain seems so far removed from my reality that it feels like it only exists in fairy tales. It is heartbreaking realising that I am no longer able to remember what it is not to be in pain." Share on X

It is heart-rendering to realise that I can longer remember what it is to be healthy.

It is heartening being forced to relive the worst moments of living with a chronic illness

"And I do sometimes have great moments, beautiful days even. But still, I am in pain. And despite trying my best with doctors' appointments, different therapies and treatments, it still isn't enough." Share on X

Every day, however, I try my best. I try my best to do what I can and not become consumed by thoughts of what I cannot. Every day, I try to paint a smile on my face and find joy in the small pleasures that bring me comfort. And I do sometimes have great moments, beautiful days even. But still, I am in pain. And despite trying my best with doctors’ appointments, different therapies and treatments, it still isn’t enough. Often they don’t work or fail to relieve the symptoms as much as we wish they could. It is heartbreaking that I still am forced to relive some of the worst moments of living with a chronic illness despite it all.

"It is heartbreaking that I still am forced to relive some of the worst moments of living with a chronic illness despite all my best efforts to remain positive and persevere with treatments." Share on X

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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." Share on X

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?" Share on X

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." Share on X

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." Share on X

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." Share on X
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." Share on X

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?" Share on X

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." Share on X
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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." Share on X

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." Share on X

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." Share on X

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." Share on X

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." Share on X

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." Share on X

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." Share on X

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." Share on X

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." Share on X

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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