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Why I Don't Always Talk About My Chronic Life
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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." Click To Tweet

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." Click To Tweet
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." Click To Tweet

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" Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet
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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Dating & Chronic Illness Main
In Chronic Illness

Dating & Chronic Illness: Will Anyone Love Me?

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February is the month of love. The world likes to remind me of it every day; emails flooding my inbox of gift ideas from retailers on what to buy that special someone. My social media feeds drown in stories of love and relationships and cliched quotes about romance. But these do not invoke warm feelings or feeling included. Instead, I find myself shrouded by loneliness; dating and my life with chronic illness seem so incompatible. Seeing so many revelling in Valentine’s celebrations is another painful reminder that I am single, still alone. Will anyone love me as I am? Will I ever find love?

Many of us dream of a love story to rival that from our favourite romance; or swept off our feet by a tall, dark stranger straight out of a Nicholas Sparks book. Such affairs, however, appear to be unattainable in the real world. Unfortunately, reality rarely plays out as they do in fiction. And men like those in Nicholas Sparks novels seemingly do not exist.

In truth, dating and the hunt to find love can be immensely challenging for anyone. It is a pursuit that requires you to put yourself out there act confident despite feeling self-conscious and vulnerable whilst trying to show the best possible version of yourself. So imagine how difficult it would be to navigate the dating field while living with the demands of chronic illness.

Dating & Chronic Illness
"Dating can be immensely challenging for anyone. But imagine how difficult it would be to navigate the dating field while living with the demands of chronic illness." Click To Tweet

Dating and Chronic Illness: Does it Make Me Undesirable?

In the world of social media and the abundance of perfect, photoshopped images of what a ‘perfect’ body should look like, every one of us has insecurities about how we look. Whenever we look in a mirror or scrutinise ourselves in a selfie, our flaws and imperfections are immediately apparent. When I look in a mirror, I have never thought of myself as pretty or attractive; in my mind, I can still hear voices calling me ugly or a freak, as if I only heard them yesterday.

As I glance at myself in the mirror, I catch sight of evidence of how illness has changed my appearance. The constant pallor of my complexion and the neverending dark circles under my eyes; because of many nights being unable to sleep because of persistent, unbearable pain. The light and sparkle have disappeared from my eyes as my symptoms continue to dominate. And every movement, every step is a painful reminder of how chronic illness has utterly altered how my body works and its limitations. Or not, as the case may be.

Thanks to FND, my walking looks ugly. It isn’t cute or coordinated like everyone around me; instead, I more resemble Bambi as he learns to walk for the first time. It’s shaky, unsteady, and insecure. And worst of all, it all happens in slow-motion. I’m unable to rush just in case I trip over my own feet or fall over in a heap on the floor. So I move slowly, attracting stares, stares either out of curiosity or concern, but stares which I swear I can physically feel.

Dating and Chronic Illness: I Am More Likely to Draw Pity or Ridicule Than Admirors or Potential Suitors

As I walk, I attract attention, just not the kind of wanted attention. My walking isn’t likely to attract admirers or suitors but more likely to draw pity or ridicule. In such moments, I am wholly self-conscious and self-loathing of my declining, uncooperative body.

"As I walk, I attract attention, just not the kind of wanted attention. My walking isn't likely to attract admirers or suitors but more likely to draw pity or ridicule." Click To Tweet

An unaccommodating body makes dating or pursuing any kind of relationship much more challenging. It’s hard to go on dates when the fatigue is intense, or the pain is so excruciating that I cannot stay still because I am in so much discomfort. It’s hard to plan dates when I don’t know how I will feel tomorrow. The thought of going on a date is anxiety-provoking when I am clueless as to if or when my legs will suddenly collapse from under me. And especially as I never know if I will get back up or even walk.

"It's hard to go on dates when the fatigue is intense, or the pain is so excruciating that I cannot stay still because I am in so much discomfort. It's hard to plan dates when I don't know how I will feel tomorrow." Click To Tweet

My inability to leave the house alone makes dating and chronic illness much more incompatible. I cannot drive because of the persistent, debilitating symptoms, making arriving at a date near impossible. I am constantly in the dark as to when next my legs will give way or if I will be able to get back up if they do; the severity of such symptoms has meant that it is not safe for me to go out on my own.

How Can I Make Somebody Else My Condition, When I Don’t Always Understand It Myself?

There are so many unknowns surrounding the neurological disorder I share my life with; how can I make another person understand when I’m unable to myself? It’s tough to explain the limitations of where I can go or why venues with high ceilings trigger such debilitating symptoms. It’s hard to be vulnerable and let someone into my life with a chronic illness, especially as people have doubted that I am even sick or implied that my symptoms are ‘all in my head.’

I carry a lot of baggage because of living with a neverending illness. But I cannot lug all the luggage alone, making me feel like a burden. Because of this, I often feel unworthy of love. Inside my head is a voice convincing me that nobody would want somebody whose life is stained so profoundly by illness.

"But I cannot carry all my baggage alone, making me feel like a burden. Because of this, I often feel unworthy of love. Who could want somebody whose life is stained so profoundly by illness?" Click To Tweet

In an advice column shared in the New York Times, entitled “Is it OK to Dump Him Because of His Medical Condition,” counselled the advice seeker, concerned about dating a man with Crohn’s disease, that “committing to this person may be committing to a life as a caregiver.” The columnist also voiced that “You don’t owe it to anyone to accept that burden.”

Is love incompatible for someone living with a debilitating chronic illness?
.Photo by Hassan OUAJBIR from Pexels

One advice column confirms what I have always feared; I am a burden, and worse, how others see me. Guilt gnaws away at me, expecting someone to share the burden of chronic illness with me. I didn’t choose it, but any future partner would be. But, I don’t want anybody to see my condition or disability as an overwhelming obligation, but instead as a problematic but manageable situation, just one part of who I am, not the entirety of my reality.

"But, I don't want anybody to see my condition or disability as an overwhelming obligation, but instead as a problematic but manageable situation, just one part of who I am, not the entirety of my reality." Click To Tweet

Rejection: A Common Thread In My Relationships

For me, rejection is a common thread that has connected many of my relationships. Rejection doesn’t only pertain to my dating life but also family and friends. When my symptoms became more apparent, friends turned their backs because my illness inconvenienced them. Ghosted, suddenly cut off by friends I thought care, excluded and left out, I have experienced them all. Hurt and confused, I could no longer pinpoint where or if I ever belonged. I felt and continue to feel unwanted, worthless.

"Ghosted, suddenly cut off by friends I thought care, excluded and left out, I have experienced them all. Hurt and confused, I could no longer pinpoint where or if I ever belonged. I felt and continue to feel unwanted, worthless." Click To Tweet

It only makes me become more and more closed-off and discouraged from letting anyone close to my heart. It seems easier to keep people at a distance than risk rejection again.

FOMO: The Feeling of Missing Out

For me, FOMO isn’t the fear of missing out. It has become the feeling of missing out. I often don a facade, snap and upload a picture intermittingly, or write a vague, positive status update, all to seem normal. Other times, I scroll through my feed and witness all the things I should be doing but seem unable. And the sting of being alone turns into a sharp pain, becoming more intense as I see those I know progressing in their personal lives with children and marriages.

"I scroll through my feed and witness all the things I should be doing but seem unable. The sting of being alone turns into a sharp pain, intensifying as I see those I know progressing in their personal lives." Click To Tweet

But here I lie besieged with symptoms that continue to worsen. I feel like damaged goods, shelved like items reduced at the supermarket because of flaws or imperfections. And as my illness deteriorates, my chance of finding love or experiencing marriage and children seem to slip further out of my grasp. Instead, I feel stuck, encased in quicksand, sinking further, and gradually disappearing as chronic illness continues to pull me down into the abyss.

"I feel like damaged goods, shelved like items reduced at the supermarket because of flaws or imperfections. And as my illness deteriorates, my chance of finding love seems to slip further out of my grasp." Click To Tweet

Dating and Chronic Illness: A Glimmer of Hope In The Love Stories of Others

But I hear stories that give me a glimmer of hope. I read stories of other chronically ill persons who have found love despite living with tremendous adversity. Those that have found a way to make dating and chronic illness achievable. The stories give me hope that you can find love, acceptance and someone who will not see me as a burden. They make me believe that I can find my very own romantic lead.

Love amd Acceptance are all I wamt
Photo by Natalie from Pexels

But still, I have doubts, doubts that I could attract anyone the way I am. I question whether I deserve such compassion; there must be something wrong with me for friends to abandon me so readily. I query whether I am an awful person; maybe I cannot be a good friend/girlfriend/wife. I distrust that any relationship will last; instead, I see myself rejected, left alone and lonely like the many times before. I don’t want to burden anyone or have anyone feel obliged to take care of me. I only want someone to see me as a person, as a partner, not as a patient or dependant.

Love and acceptance are all I want. Is that so much to ask?

"I don't want to burden anyone or have anyone feel obliged to take care of me. I only want someone to see me as a person, as a partner, not as a patient or dependant. Love and acceptance are all I want. Is that so much to ask." Click To Tweet

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depression, suicide, suicidal thoughts
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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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet
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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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet
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." Click To Tweet
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." Click To Tweet

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." Click To Tweet

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."  Click To Tweet

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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