Chronic Illness Archives – Page 3 of 89

In Chronic Illness

Reliving Heartbreak: Life With A Chronic Illness

July 14, 2021 No Comments

“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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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.

"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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

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." Click To Tweet

In Chronic Illness

Brave In The Face of Chronic Illness?

June 23, 2021 No Comments

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

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

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

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

Am I Brave In The Face of Chronic Illness

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

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

I do not feel brave.

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

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

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

Behind Closed Doors, I Am Not Brave

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

"There is a reason why you only see me on good days; because I only let you see me on such days. My worst days instead spent behind closed doors. Behind doors where no one can see my tears when the pain is more than I can bear." Click To Tweet

I am not brave when behind closed doors, where I writhe in agonising pain, crying just wanting relief. Or when left lying in bed while my refuses to cooperate, missing out on celebration and nights out.

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

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

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

Bravery: The Absence of Fear?

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

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

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

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

"I may feel anything but brave. But others seem to see it in me, so why am I unable to recognise it in myself? But, still, I want others to recognise bravery for something I have chosen to do rather than for living my life." Click To Tweet

In Chronic Illness

Mobility Aid: Signpost For Something Is Wrong

June 1, 2021 1 Comment

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

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

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

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

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

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

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

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

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

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

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

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

**Looking through my photographs, I notice that not many include me with my crutch. Whenever, I see a camera my first instinct is to hide it, hide the evidence of my sickness and disability.**

"There are no role models providing examples of how to make a crutch look cool. The lack of representation in the media only adds to my feelings of being different. And also a sense of uncertainty of where and if I belonged." Click To Tweet

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

Mobility Aid: Disability on Display

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

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

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

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

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

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

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

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

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

What My Crutch Has Given Me

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

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

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

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

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

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

Mobility Aids: Signpost For Something Is Wrong

In Chronic Illness

Sometimes, I Don’t Want To Talk About It

April 30, 2021 2 Comments

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

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

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

"I do not find it easy to articulate the full extent of constant, debilitating pain. Or the gravity of the other symptoms that are constantly with me. It is hard to put in words how much control such symptoms have on every day." Click To Tweet

I may write and talk about my health and disability a lot online, but still, there are times when I don’t want to talk about it. Photo by **Kat Jayne** from **Pexels**

The Struggle of Opening Up About My Health Condition & Disability

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

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

Wanting To Hide My Disability Due to Embarrassment and Shame

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

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

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

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

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

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

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

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

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

"Sometimes I don't want to talk about my chronic illness or disability because I worry that by doing so, my whole self-identity is that of the 'sick' girl, and that is how others will see me." Click To Tweet

I sometimes don’t want to talk about my disability because I’m worried that people will it, before they see me as a person.

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

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

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

Sometimes I Don’t Want To Talk About My Disability

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

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

"There are times I want to hide my disability because I have and still can feel different. I want to feel normal. And I want to put those times and feelings to the back of my mind and focus on things that make me forget." Click To Tweet

There are times when I want to hide my condition and disability because I want to feel normal and pretend I’m like everyone else, at least for a little while. Photo by **Daria Shevtsova** from **Pexels**

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

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

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

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

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

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

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

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

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

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

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

In Chronic Illness

The Enduring Legacy of Chronic Illness

April 13, 2021 No Comments

Today I lay on my bed, incapacitated. Impaired and overwhelmed with intense and debilitating symptoms. Severe shooting pains in my back, travelling down my legs. Extreme dizziness in which the room refuses to stop spinning. Crippling fatigue. All of which has followed me from the moment I got up this morning. And undoubtedly will continue until I go to bed. This incident is not isolated, however. It occurred yesterday and will inevitably follow far longer than just tomorrow. My life is one example of the enduring legacy of chronic illness.

During the most difficult days of living with chronic illness, thoughts become preoccupied of the past and future in particular. Wishing for the past when illness was not a worry we had and worried for the future and what it has in store. Photo by **Alex Green** from **Pexels**.

Unable to move or go anywhere, I have no choice but to live inside my head. Alone, with only dark thinkings, concerns and worries for companionship. But when living with chronic illness, the mind rarely consists of thoughts regarding the present. Instead, the ghosts are that of the past and future.

"When symptoms are bad, I have no choice but to live inside my head. Alone, with only dark thinkings, concerns and worries for companionship. But such thoughts are rarely of the present. They are of the past and future." Click To Tweet

When living with chronic illness, and especially at times of intense suffering, much time is spent wishing for the past. There are so many times when I desperately want to return to a time when this condition did not exist. Or a time when the symptoms were not such a significant part in everyday life.

"Much time is spent wishing for the past. There are so many times when I desperately want to return to a time when this condition did not exist. Or a time when the symptoms were not such a significant part in everyday life." Click To Tweet

Thoughts of the future prove to be even more terrifying as we worry about the future. When I imagine the future, I fear my health will be much worse than it is now. And a fear that I will become even more dependent on others than I am currently.

"Thoughts of the future prove to be even more terrifying as we worry about the future. When I imagine the future, I fear my health will be much worse than it is now, and I will become even more dependent on others." Click To Tweet

The Trauma of The Present When Living With Pain and Illness

But very little time is spent dwelling on the present, even though mindfulness and meditation educate us on the importance of doing so. But the here and now offers its very own traumas.

"But very little time is spent dwelling on the present. Because the here and now offers its very own traumas. The present embodies much pain and suffering, which has no pause button or end date." Click To Tweet

The present moment embodies pain and suffering, which has no end date or pause button. Even though there was a time before illness and its accompanying symptoms became so firmly tethered to my life, it now feels that it has an enduring legacy on the rest of my life.

It has cast a dark, uncertain shadow over the remainder of my days, creating anxiety and fear for what it next has in store for me. I have lost so much because of FND – my mobility, confidence but it continues to steal things. And the anguish that the illness may, or very likely will worsen over time, constantly hangs over my head.

Still, people constantly ask whether I am better. Only then to be at the receiving end of exasperating looks when I admit that I am not. Or being at the receiving end of cliched get well soon cards during periods when symptoms are at their worst. All well-meaning but only serve as painful reminders of this illness’s permanence that impacts my entire life.

"I am often at the receiving end of questions on whether I am better. Well-meaning, but these questions only severe as painful reminders of the permanence of chronic illness that continues to impact my entire life." Click To Tweet

The legacy of chronic illness and its repercussions are enduring, relentless and all-consuming.

Still, it’s almost as if the definition of the word chronic has escaped the memory of everyone lucky enough not to experience it.

The Insidiousness of Chronic Illness

Chronic does not mean temporary. Nor is chronic defined as being predictable, consistent or monotonous.

Instead, it is something that is and continues to be insidious.

Illness and its accompanying symptoms became the most undesirable routine. But as much as unpredictable illness can be, it has also become the most predictable aspect of my life. Everything changes, but at the same time, nothing changes. Each day becomes consumed by the very same symptoms and limitations from the day before. Some days are better than others, but the symptoms are always there, constantly a part of my life. Although time continues to go on, it often feels that for me, it does not. Instead, it is like time has become stuck on pause.

"Some days are better than others, but the symptoms are always there, constantly a part of my life. Although time continues to go on, it often feels that for me, it does not. Instead, it is like time has become stuck on pause." Click To Tweet

When living with a chronic illness, it can feel like our lives become stuck on pause while the time and life continues for those luckily enough to be healthy and abled-bodied. Photo by Fa Barboza on Unsplash.

Chronic illness is like a squatter. It enters, taking residence and then refusing to leave. Playing friendly with it and gentle persuasion does not work. Instead, it constantly adapts, becoming more robust and resistant to defeat. It becomes an ongoing deal, one that you are unable to ever ‘get over.’

No, instead, every single day becomes a fight, a fight between myself and my fragile, malfunctioning body. Yes, it helps to keep me alive but it feels that it is intent on persecuting my every moment.

The journey of living with such an illness is disheartening as well as deeply frustrating. Setbacks and disappointment inevitably follow signs of progress and improvement. Although sadly there seems to be many more setbacks and disappointment than ones of progress and improvement.

"The journey of living with chronic illness is disheartening as well as frustrating. Setbacks inevitably follow signs of improvement. Although there seems to be many more setbacks than ones of improvement." Click To Tweet

The intense pulsating pain wreaking havoc throughout the entire body has become an unwelcome but sadly too familiar intrusion with the beginning of each new day.

The Enduring Legacy of Chronic Illness

But illness has an enduring legacy, so it is not just the here and now interrupted by its symptoms. No, the signs of ill-health will be forever crashing moments of carefree fun, parties, celebrations and relaxing holidays.

"Chronic illness has an enduring legacy, so it is not just the here and now interrupted by its symptoms. No, the signs of ill-health will be forever crashing moments of carefree fun, parties, celebrations and relaxing holidays." Click To Tweet

Every pain and strange sensation is here to stay. Forever. No longer can muscle strains or sprains heal with heat or ice. Muscle stretches or exercises no longer ease the uncomfortable tightness. Instead, the pain never goes away. No longer are dizziness or overwhelming fatigue are mild symptoms of an acute illness; they are now permanent. The all-over, throbbing ache and trembling are not rare occurrences; it is my reality every single day, 365 days of the year and beyond.

Enduring Yes, But Never Used To It

However, it does not mean that I am used to this disorder or everything that accompanies it. There is still a shock to the system whenever symptoms suddenly emerge. Grief ebbs and flows, becoming stronger and more intense when symptoms intensify or during extremely debilitating flares. My life with this disorder is constantly in flux. There are times when I can cope beautifully with the ups and downs of living with FND. At other times, however, all I want is to curl up and cry with the injustice of living with an illness that will never disappear. And the injustice of having to endure such severe and debilitating symptoms all day, every day.

It feels like my life is constantly in flux. There are times when I can cope and get on with my life despite chronic illness and its limitations but other times I am not and just want to scream and cry with the injustice of it all. Photo by Camila Quintero Franco on Unsplash.

"My life with this disorder is constantly in flux. There are times when I can cope beautifully with the ups and downs of living with chronic illness. At other times, all I want is to curl up and cry." Click To Tweet

I adapt to the changes in my body and the increasing limitations with no other choice but to do so, but still remembering what I used to be capable of, but which is now no longer accurate. Even if I prefer not to think of the losses incurred over the years of living with illness, my medical records track them for me. I can hope for remission or a cure to return to the normal I knew many years before but knowing with great sadness that it is an impossible dream.

Because chronic illness is enduring, as well as the legacy it leaves behind.