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Why I Don't Always Talk About My Chronic Life
In Chronic Illness

Why I Don’t Always Talk About My Chronic Life

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Do you know that you talk about your illness a lot? I hear this accusation a lot, but one I can’t entirely agree with, there are reasons why I don’t always talk about my chronic life.

Like many people in this day and age, I share a lot online. And yes, much of my engagement online, particularly on social media, involves discussing my life living with a neurological disorder. After many years of not knowing the cause of the debilitating symptoms affecting me so immensely and feeling so alone, I began sharing many of the details of my ongoing journey with the vast array of unusual and puzzling symptoms, diagnosis and treatment. I’ve continued to share the ups and downs of living with a chronic illness. The lessons I’ve gleaned along the way as my symptoms worsened, becoming more disabled by them. I share much about my condition but don’t always discuss my chronic life.

I Don't Always Talk About Chronic Illness

But as someone who identifies as chronically ill, I find myself somewhat in a quandary. Because if you talk too much about it, that is all you are; an attention seeker, lazy, a burden. But, if you don’t talk about it or talk about it only a little, you must be faking.

"I find myself somewhat in a quandary. Because if you talk too much about it, that is all you are; an attention seeker, lazy, a burden. But, if you don't talk about it or talk about it only a little, you must be faking." Share on X

As a blogger documenting my experiences of living with a chronic illness, people see me as the former. They see me as an attention seeker who talks about chronic illness far too much than is necessary.

Why I Don’t Always Talk About My Chronic Life

But I do not share every detail about the illness, which is a massive part of my life. I do not talk about the endless doctor’s appointments that have only brought about disappointment and heartache. Because it is painful enough to have to sit and listen to bad news, such as there’s very little they can do just the once. But having to rehash such information through conversations or posts on social media is to relive the worst moment of living with chronic illness repeatedly. I have also set limits on how detailed or graphic I get so as not to make people uncomfortable.

But usually, I become quiet when experiencing a severe, debilitating flare. The pain silences me. It’s as though an evil presence steals the thoughts and words I wish to articulate. But I cannot. I am powerless against the metaphorical gag that pain has tied around my mouth. When symptoms are at their worst, it can be hard to find the words to express the depth of the pain as the symptoms’ incandescent rage wreak havoc upon my body and spirit. I struggle to find the words to describe the unsettling darkness that frequently descends as depression and anxiety become unwelcome guests inside my head once again.

"But usually, I become quiet when experiencing a severe, debilitating flare. The pain silences me. It's as though an evil presence steals the thoughts and words I wish to articulate." Share on X
Staying Silent on My Chronic Life
Photo by Kristina Flour on Unsplash.

So I don’t share. I don’t talk about my life and what it is like living with something so unwanted but will never leave. Instead, I flee to find privacy and solitude to escape my symptoms and struggles to cope with them being on display. Instead of shouting loud about my illness, I struggle on in silence, my private turmoil remaining a shameful secret deep inside.

"I flee to find privacy and solitude to escape my symptoms and struggles to cope with them being on display. Instead of shouting loud about my illness, I struggle on in silence." Share on X

Sometimes, Talking About My Illness Shines an Even Brighter Light On It

As symptoms continue their relentless assault on my body, overwhelming fatigue descends. Fatigue that is so intense writing, typing or even talking requires far more energy than I can summon. Even if I wanted to share my insights and experiences, I could seldom find the energy to do so.

When pain ramps up and symptoms worsen, it feels like a threat, a living nightmare I cannot escape. But giving voice to it feels like it only gives it more power. It shines a light on it, giving it much more attention than it deserves.

I think people must be sick of listening to me bitch about this illness that makes every day a battleground. But, just as they may be tired of hearing it, I am sick of living it. I am bored of having to talk about it. In truth, I would much rather be talking about something, anything, else. I would much rather be discussing the books I’m currently reading or the film I watched last night.

"But, just as others may be tired of hearing about my chronic illness, I am sick of living it. I am bored of having to talk about it. In truth, I would much rather be talking about something, anything, else" Share on X

It is painful to remember the person I envisioned I would become. Instead, I find myself imprisoned in a fragile and useless body, unable to be the person I want to be. Or even live the life I had dreamed I would have.

The Paradox of Chronic Illness: To Talk About It or Stay Silent?

I find myself trapped within a paradox where I don’t want to talk about living with a chronic illness but do it anyway. Scrolling through my feeds, I encounter irrefutable evidence corroborating that most of my posts are primarily concerned with chronic illness. So why do I spend much time discussing my life with chronic illness? Especially when I am sometimes reluctant to do so?

The overwhelming exigence of this illness, its symptoms and its increasing effects consume every part of who I am. It impacts every facet of my life and everything I do. So it can be hard not to talk about it when it’s so present in my life. My identity often buckles underneath the heavy burden of chronic illness, and I have to fight to remember what makes me, me.

"The overwhelming exigence of this illness, its symptoms and its effects consume every part of who I am. It impacts every facet of my life, everything I do. So it can be hard not to talk about it when it's so present in my life." Share on X

So I talk about my illness. I talk about the debilitating weakness in my legs. I discuss the grief of living in a body that I can no longer trust; the number of times my legs have given way, increasing exponentially. I talk about the unexpected symptoms that can wreck my day, sometimes even my week. I talk about them because they are my life. And so, it can feel that it is the only thing I have to discuss in my life.

"I talk about the unexpected symptoms that can wreck my day, sometimes even my week. I talk about them because they are my life. And so, it can feel that it is the only thing I have to discuss in my life." Share on X

Chronic Illness Dictates Everything In My Life, So It Is Hard Not to Talk About It

I don’t talk about it because I am uninteresting with nothing else going on in my life. I talk about it because no matter what I do, my illness always controls part of it. Like becoming a parent to a newborn, its arrival has taken over my life. It never takes a break; it is always watching, stalking my every move.

Sometimes I feel compelled to talk about my chronic illness to explain. I regularly need to explain why I am unable to participate in things or why I may suddenly cancel plans. I often need to throw light upon strange quirks that may seem odd to others but help me survive the onslaught of symptoms in a world where I feel I don’t belong. It’s almost as if I have to apologise or defend my existence in the world or the accommodations I need to make life easier, to feel safer in a world which can sometimes feel precarious because of my constant obliviousness to when symptoms will unexpectedly appear.

"I regularly feel the need to explain why I suddenly cancel plans. I often need to throw light upon strange quirks that may seem odd to others but help me survive the onslaught of symptoms in a world where I feel I don't belong." Share on X

Sharing my story openly and hearing that others have found comfort and validation in my words is incredibly meaningful for me. Not only does it prove that my experiences matter, that I matter, but it also proves that I can help and inspire others. It has given me purpose and is something positive that has come out of all my pain and struggles, something that I can hold onto and remind myself of on even my worst days.

"Writing and sharing my story has given me purpose and is something positive that has come out of all my pain and struggles, something that I can hold onto and remind myself of on even my worst days." Share on X

I Don’t Always Want to Talk About My Illness.

Some may say that I talk about my chronic illness too much. But in truth, the amount of time I talk about my condition is inconsequential compared to the thoughts and impact it has on my life. I wish it were something I didn’t have to think about or talk about, but as unwanted and disliked, but it is my life, my reality. If everyone else can talk about their lives without judgement, don’t I have the right to talk about mine?

"Some may say that I talk about my chronic illness too much. But in truth, the amount of time I talk about my condition is inconsequential compared to the thoughts and impact it has on my life." Share on X
The amount of time I talk about my chronic illness is inconsequential compared to the thoughts and impact it has on my life.

But I don’t always talk about my chronic illness. Sometimes, I am bored with the topic and would much rather have a conversation concerning books, films or the latest fixation on Netflix (or any of the other streaming services!)

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depression, suicide, suicidal thoughts
In Chronic Illness

Depression: The Darker Side of Chronic Illness

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Trigger Warning: Descriptions of Depression, Suicide and Suicidal Thoughts

I love losing myself in a story. I especially love doing so when experiencing adversity and setbacks in my health. It allows me the opportunity to escape from my life dictated by illness. Instead, I can experience excitement and adventure, albeit in my vivid imagination. With a clear beginning, middle and end, stories feel predictable and reassuringly safe with their linear narrative. Because living with a chronic illness is terrifyingly unpredictable, it has no neat beginning, middle and end. Chronic illness offers no arc, no gratifying climax or satisfying resolution. Instead, its narrative is chaotic, leaving you unsure which chapter of the story you are on. Or which chapter comes next.

In my last post, I wrote about the deterioration I have experienced in my symptoms of FND. A decline that I was entirely unprepared for and which I could not have foreseen. Acceptance, which I once worked so hard to achieve, was suddenly wrenched from my grasp. Once again, I found myself adrift, lost and trying to navigate the five stages of grief I addressed so long ago to find acceptance for this new body I now inhabited.

When confronted with worsening symptoms, we find ourselves thrown back into the five stages of grief and desperately searching for a way back to acceptance – a photo by Sofia Alejandra from Pexels.
"Acceptance, which I once worked so hard to achieve, was suddenly wrenched from my grasp. Once again, I found myself adrift, lost and trying to find acceptance for this new body I now inhabited." Share on X

As the days and months passed, I continued to be besieged by severe, unyielding symptoms. Any hope and positivity I possessed began to be concealed by dark, stormy clouds. As I struggled and wrestled with debilitating and disabling symptoms, I found that not only my physical health was suffering. So too was my mental health; the five stages of grief became fixated on just one: depression.

"As I struggled and wrestled with debilitating and disabling symptoms, I found that not only my physical health was suffering. So too was my mental health; the five stages of grief became fixated on just one: depression." Share on X

As Symptoms Worsen, Depression Can Start to Settle In

But it’s not only depression that paid a visit during the darkest days. Anxiety, too, joined the solemn party. My body, time and life became dictated by pain and illness; I became on edge about everything. Every day I edged ever closer to the abyss, with dark thoughts like hands extending and pulling me toward the brink.

Depressive thoughts extending like hands pulling me toward the abyss
"My body, time and life became dictated by pain and illness; I became on edge about everything. Every day I edged ever closer to the abyss, with dark thoughts like hands extending and pulling me toward the brink." Share on X

Soon, the presence of every persistent, unyielding symptom eclipsed everything else in my life. I felt numb to everything besides the severe, burning pain or the unrelenting, uncontrollable trembling in my legs. A pang of incredible sadness and darkness shrouded me, a deep depression settling into my life. I felt hopeless and helpless as I existed amidst it all, with no choice but to endure and continue on living. The future felt bleak and doomed as it seemingly only offered more of the same, or I feared there would be further deteriorations of my health and mobility.

I lost my appetite due to feeling constantly sick. I hardly slept. The effort of just trying to smile felt impossible, and a frowned, sad expression became the face I displayed to the world. Crying came so effortlessly, sobbing so much that I thought I would drown in my tears. Everything felt like such an effort that many things fell by the wayside as I had no energy or motivation to do anything. I no longer found enjoyment in the activities I love; even reading failed to bring the pleasure and escapism it previously did. I was moving through the days but not experiencing them.

"The effort of just trying to smile felt impossible, and a frowned sad expression became the face I displayed to the world. Crying came so effortlessly, sobbing so much that I thought I would drown in my tears." Share on X

Depression and Suicide: Death Can Sometimes Feel More Favourable Than Living A Life Sentence With a Chronic Illness

Each night I hoped that death would come for me, to free me from the pain and anguish that illness so often creates. But as I awakened each morning, I felt an overwhelming disappointment that I was still alive. I felt that life was no longer worth living, so I wanted mine to end. And then, on one awful, trying night, a night battling extreme, unrelenting symptoms, I tried to take my own life.

"Each night, I hoped that death would come for me, to free me from the pain and anguish that illness so often creates. But as I awakened each morning, I felt an overwhelming disappointment that I was still alive." Share on X

In complete despair, and with no end in sight, I placed a pillow over my head and attempted to smother myself with it. I had it over my face for a few minutes, light-headed from a lack of oxygen. I don’t know what made me stop, but I quickly removed the pillow from my face. Gasping for air, I dissolved into fits of tears, feeling shocked and shame at what I had just done.

I don’t think I ever actually wanted to die. Not really. I couldn’t see any other option as I felt depleted from fighting the pain, anxiety, depression, as well as a myriad of other symptoms for so long. I thought I had no more fight left in me. My thoughts always focused on the longing for the pain and the other cruel, relentless symptoms to cease. I wanted a break, some peace from the constant, horrible symptoms torturing my body.

When you live with a chronic illness, you know it is one with no expiry date. The knowledge that the pain and illness’s other debilitating symptoms are permanent can make death seem favourable. Suicide can seem the most exquisite kind of freedom, freedom from the pain and struggles of living with a chronic illness.

Same Shit, Different Day
Every day, an apt description of life with a chronic illness can feel the same as the constant, disabling symptoms that take over your life. It makes wanting to live almost impossible at times – a photo by Renda Eko Riyadi from Pexels.
"The knowledge that this debilitating illness is permanent can make death seem favourable. Suicide can seem the most exquisite kind of freedom, freedom from pain and struggles that come with living with a chronic illness." Share on X

Depression, Like Chronic Illness Is Debilitating and All-Consuming

Like chronic illness, depression is debilitating and all-consuming. Depression is like a bloodsucking parasite. It wheedles inside your mind feeding off your deepest fears and darkest insecurities. A parasite that made me believe that I was weak, a failure, a burden, whispering that no one could or ever would accept or love me as I am. It amplified the difficulties I was facing as impossible obstacles I could never overcome, making my life seem even more senseless.

"Depression made me believe that I was weak, a failure, a burden. It amplified the difficulties I was facing as impossible obstacles I could never overcome, making my life seem even more senseless." Share on X

Because of this, I isolated myself, not telling a soul about how bad my symptoms had gotten or the effect it was beginning to have on my mental health. I already felt like a burden on everyone around me. I did not want to burden them further with my fears that my symptoms were worsening and me becoming sicker as a result. But instead, my silence, the things I have been holding inside, only locked me inside an isolating, lonely prison.

"I didn't want to burden anyone with my fears that my symptoms were worsening, But instead, my silence, the things I have been holding inside, only locked me inside an isolating, lonely prison." Share on X

But I found that all my struggles seemed more bearable when I eventually gave a voice to everything I had held inside. It didn’t magically cure my symptoms or heal the depression that had wormed its way into my life, but I suddenly felt lighter somehow, knowing that I didn’t have to shoulder the burden alone anymore.

Asking For Help Can Be Scary and Intimidating But Really Helps When Struggling

I managed to schedule an appointment with a doctor at my local surgery. Thankfully, the doctor I saw was fantastic, spending over half an hour with me discussing the deterioration in my symptoms associated with my neurological disorder as well as the depression and suicidal thoughts. She also gave me a neurological examination. After a discussion, we decided to increase the medication I am already taking to treat depression and anxiety. The doctor is also referring me back to neurology for an urgent appointment. One I am still waiting on four months after that same appointment.

So, how am I feeling now? Well, the symptoms that had worsened all those months ago are still as bad. They continue to wreak havoc on my life, making everything extremely challenging. As a result, I still experience down days, many more than I would care to admit, and definitely, more than I would want. I am receiving help and support on coping strategies, practising mindfulness, and building resilience. I am focusing on accepting what I cannot change and taking steps to improve on the areas of my life that I can. All while trying to find acceptance for this new version of me, Rhiann 2.0, with worsening symptoms and worsening mobility.

" I am focusing on accepting what I cannot change and taking steps to improve on the areas of my life that I can. All while trying to find acceptance for this new version of me." Share on X

But I no longer have thoughts of wanting to die or even harming myself, which is an improvement from where I was all those months ago. Instead, I am concentrating my thoughts on all the reasons I have for living.

"Instead of focusing on everything that illness has taken from me, I am concentrating my thoughts on all the reasons I have for living." Share on X

If You Are Struggling, Please Don’t Do So In Silence – There are places you can go for help and support

If you are struggling with depression and suicidal thoughts, I’m sorry. I know just how tough it can be, but please don’t struggle in silence. Even if you cannot confide in a friend or family member, many organisations and helplines can help and give support. It may be a cliche, but talking about it indeed help, becoming unburdened and lighter from keeping it locked inside.

UK Samaritans: 116 123
SMS SHOUT to 85258
UK Calm (Campaign Against Living Miserably): 0800 585858

Mental Health Helpline For Wales: CALL (Community Advice and Listening): 0800 132 737
National Suicide Helpline: 0800 689 5652
National Suicide Prevention Helpline (US): 1-800-273-8255
Beyond Blue (Australia for help with depression, anxiety and suicide): 1300 22 4636
Canada Suicide Prevention Service: 1-833-456-4566

Or, for any other country, there is a list of suicide crisis lines available here.

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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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