chronic pain Archives – Page 9 of 23

In Chronic Illness

What You Don't See About Living with FND

November 30, 2019 8 Comments

Living with a chronic invisible illness is both a blessing and a curse. I live with a condition called FND, which remains hidden. One of the evils of such a condition is everything which you don’t see about living with the everyday hidden struggles.

The Blessing of Living With An Invisible Illness

The blessing of such conditions lies in the notion that the illness, and it’s resulting limitations do not precede us. And allows us to choose with whom to confide in, and when and how. Illness and it’s resulting limitations remaining a well-kept secret. A secret that does not define us or how others perceive us; and not limited by popular stereotypes or sweeping generalisations.

When chronic illness remains invisible, people do not hold lower expectations of us, that many whose conditions are visible endure. It can be a blessing that even when feeling awful, others often don’t notice. Makeup can help hide the tired bags under the eyes and conceal the other visible effects of chronic illness. A fake smile can be painted to trick those who don’t know us well or the struggles we are forced to endure always.

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The invisibility of chronic illness allows us the opportunity to blend into the ranks of ‘normality.’ Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well.

"Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well." Share on X

But It’s Merely An Act: A Performance To Fool

But it is just that – an act. A performance that we regularly execute to make everyone else believe everything is fine. In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness and its accompanying symptoms supersede everything else, and this performance becomes difficult to sustain. And the magical cloak slips revealing the struggles that were once exquisitely hidden.

"In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness supersede everything else, and this performance becomes difficult to sustain." Share on X

One of the most frustrating curses of living with an invisible chronic illness is just that – concealed to the outside world. When we do share our experiences of the suffering and pain, it is often downplayed, or dismissed by those listening. Others glance at our young, healthy-appearing bodies and the mask that we have had years perfecting, and exclaim “But you look so good!” And it is frustrating when others continuously think that we cope with living with a chronic illness so well, not realising how heavy the demands of it all is every day.

Physically we are seen by those in the outside world, but what you don't see is the struggles faced by those, like me, who are living with an invisible illness — Physically we are seen by those in the outside world, but what you don’t see is the struggles faced by those, like me, who are living with an invisible illness

It sounds much like a compliment. But for those of us living with a chronic illness, it is a statement of disbelief and scepticism. But what the outside world sees; what we choose to let others see is a carefully constructed mask. A mask that allows us to traverse amongst the able-bodied world that exists outside. And to pass as ‘normal’ and healthy and having to avoid defending my diagnosis to prospective sceptics.

A curse of living with such an illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day. The inability for others to bear witness to all of the ways FND affects every facet of my life. It’s the invisible battles as well as others unable to see or understand the effect they have only adds to the loneliness that already permeates my already microscopic world.

"A curse of living with an invisible illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day." Share on X

What You Don’t See (Or Don’t Choose to See)

What you don’t see is that I am faking being well; faking health to preserve my dignity, energy and ability to accomplish whatever it is I’m doing before my legs fail me and I collapse.

You don't see that we are often faking at being well. Adopting a mask to wear when out in the wider world to fool people into believing we are like one of them. You also don't see the struggle it takes in keeping this mask on at all times. — You don’t see that we are often faking at being well. Adopting a mask to wear when out in the world to fool people into believing we are like one of them. You also don’t see the struggle it takes in keeping this mask on at all times. Photo by **Mash Babkova** from **Pexels**

You don’t know the effort it takes to fake at being well. And although faking is difficult, it is often easier than exposing the pain that exists, and then having to use precious and already limited energy to defend my permanent state of being unwell.

What you don’t see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain. The pain that I attempt to overlook when among society.

"What you don't see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain." Share on X

You Don’t See the Fear and Anxiety That Endures Because of FND

What you don’t see is the overwhelming fear that encroaches over every aspect of my life. The anxiety that this condition will continue to worsen. The concern that the list of limitations that already exist will continue to get longer; and the number of losses increasing exponentially. The underlying fear that illness will become the sole existence of my life. And the fear that I will end up being all alone in this world.

What you don’t see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone. You don’t see the self-doubt that always exists; continually doubting what I am capable of and overanalysing and questioning every decision made. I often begin to overestimate the limitations that now prevails due to FND, regularly convincing myself that I cannot do something or handle going somewhere because of the disabling symptoms that exist because of it.

"What you don't see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone." Share on X

You Don’t See The Enduring Impact of FND

You don’t see the excruciating pain that greets me in the morning as I wake after a restless night of painsomnia. Or the number of times it takes for me to even get out of bed in the morning. You don’t see as the weakness in my legs prevails, refusing to cooperate or bear my body weight. You don’t observe the nights my body contorts from unrelenting and disabling pain that radiates throughout my legs. Pain that often keeps me awake hours into the fledgeling mornings.

You don't see the excruciating nights spent writhing in pain as it ravages your body and results in painsomnia — You don’t see the excruciating nights spent writhing in pain as it ravages your body and results in painsomnia

You don’t see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body. Or the days spent crying or feeling anger at all the things I can longer do and everything I have lost as an individual.

"You don't see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body." Share on X

What you don’t see is the constant dizziness and vertigo that consumes my entire life. Nor can you see the visual disturbances that make it incredibly difficult to be able to focus on, or trust anything that I see in my field of vision.

What you don’t see is the incredible loneliness that I feel because of this condition. The friends that I have lost along my journey of trying to fit into a world that I seemingly do not belong. You do not bear witness of the challenge in making new friends or the difficulties in maintaining friendships because I am primarily housebound.

You don’t witness the anguish and frustration of after gaining a much-worked for a degree; I am not able to work due to the disabling symptoms that accompany FND. It hurts knowing that when you look at me, you wish that you didn’t have to work either. Or the thought that you may think that I am exaggerating and only playing hooky.

You Don’t See the Struggles and Impact of The Symptoms of FND Can Have

You do not witness the unimaginable struggle of walking or standing in a queue while my legs are severely trembling. The trembling so relentless that it is the only thing my mind can focus on and nothing else. You do not see the unimaginable anxiety that courses through my mind that my legs will suddenly give way, leaving me collapsed in a heap on the floor. You cannot see the images that flood my head of the many times it has happened before. And you cannot know the fear it creates about going out at all, or how it easy it becomes to prevent certain places or situations to avoid it from happening again.

You don’t see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop.

"You don't see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop." Share on X

You don’t see the pill I am forced to count out each week, or the side effects I have to plan my life around. Nor can you see the ongoing pain. Or depression. The endeavour to remain resilient in the face of all of the struggles.

The Lessons Learnt When Battling An Invisible Fight

These are only some of the struggles faced by someone living with an invisible condition such as FND. Trust me; there are so many more. And as I continue to battle and wrestle with the enduring effects of this current flare, I begin to feel more of the frustrations because of it’s lack of visibility and the lack of understanding of the impact they have on my life.

Fighting a battle that is not recognised by anyone other than myself has taught me an invaluable lesson. It has taught me that no matter how someone looks or acts, you never know what’s happening in their lives.

So be kind, for everyone you meet is fighting a battle you know nothing about, or even understand.

But perhaps it is also an important lesson to open up more and articulate to others about my experiences and struggles of living with an invisible illness. To help people, and especially those closest to me the toll it can take on every area of my life.

Perhaps such battles remain invisible because we are often too reluctant to voice them.

In Chronic Illness

The Before and Afters Of Chronic Illness

November 13, 2019 6 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This November I am using the prompts to discuss the before and afters of life with a chronic illness.

Life is messy. It comes with many responsibilities and obligations, and as we become older, these only increase. One such responsibility and one that often is accompanied by stress and worry involve financial responsibilities that characterise adult life.

Becoming an adult, although exciting; the thrilling prospect of freedom also coincides with the realisation of the financial burden of everyday life. The daily life of being an adult. The sudden understanding of everything that needs paying for when a responsible adult.

The Debt Incurred By Fun and Spontaneity

When becoming an adult with a chronic illness, there is an added financial burden — a sudden and new responsibility for paying for all the paraphernalia that accompanies life with a long-term condition. When living with a chronic illness, medications need paying as well as aids to make life easier when symptoms become out of control, and so on.

But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken. Often there is an apparent reason for the sudden flare in symptoms or a decline in energy levels. Sometimes, there is no apparent reason at all, and are left speculating the reason for the unexpected presence of symptoms.

"But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken." Share on X

When living with a chronic illness there is a hefty payback for every expansion of effort and energy. Often such a payback comes in the form of a severe and debilitating flare in symptoms.

There is now no room to be spontaneous and reckless with our time. Doing so doing can provoke and anger the symptoms that are always present. As much as we take delight in going out, there is, unfortunately, a payback of the effort and energy that the given fun had required.

Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back. The payback of every moment of fun and spontaneity is a debilitating increase in the symptoms that accompany such conditions.

"Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back." Share on X

Plunging Into The Unknown Possibilities of The Future

We often like plunging into the unknown possibilities that the future offers. We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread. Those events and fun outings that we would once look forward to now induces fear due to the uncertainty that surrounds life with a chronic condition.

"We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread." Share on X

We are unable to pencil in the dates when it would be most convenient for symptoms to appear; they do so with no concern or care for the plans made in advance. Instead, arrangements are made with no knowledge of how we are going to feel on the day in question. Or the state our bodies are going to be in on the day in question. Plans that should induce joy and excitement now only prompts thoughts of ‘what if.’

It can be exciting to plunge into the unknown possibilities that the future holds, but when living with chronic illness, however, it can trigger feelings of anxiety and fear due to the uncertainty that defines living with a chronic condition.

We look ahead, and instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering.

"Instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering." Share on X

“No, you may not go to the ball!”

Ah, remember the blissful and carefree days before the existence of illness and its numerous symptoms? The many invitations that we’d receive to ask for our attendance to social gatherings hosted by friends or family. The opportunity to escape the monotony of a night at home; the promise that we will go to the ball.

Now, the future and the continued presence of chronic illness, the doors to such balls are firmly closed to us. Usually, we begin to be overlooked, no longer invited to parties because illness has forced us to cancel on numerous occasions in the past. Or, sometimes people believe that we will not be physically well to attend. Our fairy godmother no longer in existence, and no longer able to go to such festivities.

When living with a chronic illness we, unfortunately, don’t have a godmother to allow us to go to the ball!

Invitations that now arrive in this new present and continued future take the form of letters for doctors and hospital appointments. Those living with a chronic illness will know the difficulties of going out when plagued with disabling symptoms. At times, it can become so bad that the only time we do go out is to such appointments.

"The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out." Share on X

The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out.

Organising Life Around The Changes That Illness Brings

The past, once full of spontaneity and life led on impulse becomes no more with the arrival of a chronic illness. The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations caused by this permanent new companion.

"The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations of chronic illness." Share on X

Life now and in the future, are unable to cope with days crammed full of activity due to such limitations chronic illness inevitably brings. So we must reevaluate what is most important to us, and what we can do to organise our days into something manageable.

calendar of appointments - life with a chronic illness! — A life with a chronic illness needs careful organising – calendar often full of doctor and hospital appointments

To create a ‘new normal’ out of the broken and destructive pieces of our old lives.

Our calendars once crammed full with future parties, and all the invitations that asked for our attendance now erased. In its place, a carefully organised calendar detailing the many doctor and hospital appointments that accompany this new chronic life.

None of Us Knows What The Future Holds

Oh, the future which in the past seemed so bright and exciting. The endless possibilities that it once promised now seemingly lost forever. Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it.

"Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it." Share on X

Still, there are a million questions and uncertainties that the future holds out in its hands. Even living with the certainty of illness, there are still endless possibilities to explore if only we find the courage to do so.

Yes, the possibilities might be sparse and limited due to the many limitations that lie in the wake of illness, but they do exist. And for that provides a glimmer of hope and promise.

The Before and Afters of Life With Chronic Illness

Life is often a series of before and afters especially when we experience something significant. When diagnosed with a chronic illness life becomes defined by the before and afters of life with chronic illness.

When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness. It is up to us to make the most of the unchangeable situation.

"When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness." Share on X

In Chronic Illness

What They Don’t Tell You About Life With Illness

October 12, 2019 12 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. For October, I have used the prompts to write about some of the lessons that chronic illness will show you. Lessons that incidentally nobody will warn you that illness will teach you.

“Patient’ defined as ‘a person receiving or registered to receive medical treatment.’ One that a person only identifies with when sick and in need of medical treatment.

When diagnosed with a chronic illness, a patient becomes a more permanent part of our identity. An identity that we gave to learn to juggle with many others. A new chapter of our lives, as we learn to wrangle new terminology and to learn to cope with unfamiliar symptoms.

Waiting While Living As A Patient and Learning What It Is To Be Patient

And as we become a patient, we also learn another definition of the word. Another explanation of ‘patient’ describes it as being ‘able to accept or tolerate problems, or suffering without being annoyed.’

Living with a chronic illness involves a lot of waiting and a need for patience.
Photo by **Lukas Hartmann** from **Pexels**

Because living with a chronic illness involves a significant time of waiting. You learn to wait and to wait with patience. It is a life consisting of waiting for symptoms and side effects to dissipate. It often means waiting for appointments to see doctors and consultants. For only then to spend a numerous amount of time waiting in hospitals for the appointment with the consultant to begin.

"Because living with a chronic illness involves a significant time of waiting. It is a life consisting of waiting for symptoms and side effects to dissipate. We are forever waiting for our lives to return to normal." Share on X

Waiting with the hope that the new treatment recommended to us works, waiting to feel better. And waiting for our lives to return to normal, waiting, waiting, waiting.

But when the symptoms don’t disappear; becoming stronger and more persistent, we begin to part ways with hope. As symptoms worsen, becoming a prominent feature in our daily lives, and with it, the glimmer of hope dwindling, the cycle of grief begins once again.

Parting With Hope Of Returning To Our ‘Old Normal’

As we reach acceptance, however, and the cycle of grief pauses, we stop looking for a cure. The realisation and acceptance of the permanence of chronic illness dawn on us, parting with the notion of returning to our ‘old’ normal.

We learn to let go; accepting that we cannot change what is happening to us. Or the future and the inevitable progression of illness and the worsening of symptoms. We can only prepare for what lies ahead but refusing to let go and surrender before the inevitable befall us.

"As we reach acceptance, however, and the cycle of grief pauses, we stop looking for a cure. The realisation and acceptance of the permanence of chronic illness dawn on us, parting with the notion of returning to our 'old' normal." Share on X

Nothing can prepare you for the destructive force that pain and other symptoms have on every facet of our lives. Illness dripping its poison into every corner of our lives. Nothing or no one can help you anticipate the misery that such symptoms cause, and the days where you want to give up. Unfortunately, there is no such handbook given on the day of a life-changing diagnosis. No such book is giving advice or instructions on how to cope and live with this new world of chronic illness.

No Alternative But To Persevere

Others may seem impressed by our ability to persevere despite everything that chronic illness throws at us each day. For those of us, living with it, however, there is no alternative other than to persevere. When diagnosed with a chronic illness, they fail to disclose that persevering becomes a part of daily life along with pain and other disabling symptoms.

"Others may seem impressed by our ability to persevere despite everything that chronic illness throws at us each day. For those of us, living with it, however, there is no alternative other than to persevere." Share on X

Life becomes about persevering through the crippling effects of chronic illness to achieve your goals, despite the difficulty when being in pain all the time.

"Life becomes about persevering through the crippling effects of chronic illness. It's persevering through every horrendous flare and tough periods that chronic illness continually delivers."

There are endless moments of continuing through new treatments and the horrible side effects, while not knowing if it will even be successful. And it’s persevering through every horrendous flare and tough periods that chronic illness continually delivers.

"Life becomes about persevering through the crippling effects of chronic illness. And it's persevering through every horrible flare and tough period that chronic illness continually delivers." Share on X

Self-Affirmations As A Weapon Against The Difficult Days

After a life-changing diagnosis, there is no one to tell you that to persevere and get through the tough days you begin to rely on self-affirming and motivational statements.

Bold and uplifting proclamations that say to the world ‘I can do it.’ These statements are not only for motivation but also serves as a reminder of strength and resilience in the face of adversity. A reminder that we had faced tough times before and came through, and we will do so again. They provide strength and reassurance when faced with a crisis, feeling weak and unsure.

"Bold and uplifting proclamations that say to the world 'I can do it.' These statements are not only for motivation but also serves as a reminder of strength and resilience in the face of adversity." Share on X

It can be hard to find self-worth, loving yourself when chronic illness sweeps in stealing what gives your life purpose. Affirmations remind us that we are not to blame, helping to eliminate feelings of worthlessness that chronic illness can create.

Loving Life Within The Bubble of Pain and Illness

When diagnosed with a chronic illness, nobody informs you that you will begin to hate your life. The constant symptoms, and all of the unknowns that now exists it is hard loving this new predicament. It often leads to dissatisfaction with life, as the losses due to chronic illness increases. Illness brings with it many negatives, and as such makes it difficult to find any positives within it.

Self-acceptance is a daily struggle, as loving others is easy but finding love for ourselves is difficult. Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are.

"Self-acceptance is a daily struggle, as loving others is easy, but finding love for ourselves is difficult. Sometimes, we become so lost within the chronic illness; it is easy to see that is all we are." Share on X

To thrive and not merely to survive, finding aspects to love and find satisfaction within life with a chronic illness is essential. To find love for ourselves, we must begin to accept those traits that we do like about ourselves. Yes, there’s no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments – moments to love and cherish despite the misery that chronic illness inflicts in the lives of those affected.

"Yes, there's no doubt that life with a chronic illness is tough. But life has also reminded me there are many beautiful moments." Share on X

As a person who experiences many moments of adversity, they continuously teach me the meaning of the phrase ‘Tough times don’t last, tough people, do.”

A lesson that I am thankful I have learnt by living with a chronic illness.

In Chronic Illness

A Chronic Life: The Grief of FOMO & FOGO

September 26, 2019 3 Comments

The Rise of FOMO Due To The Social Media Crazed World

In this social media crazed world we live in has borne FOMO, the “fear of missing out.”

An anxiety-inducing feeling of being left out of something everybody else is doing, or knows about, or owns. It’s the pressure of never wanting to turn your phone off in case of a missed notification or refusing to turn down an invite to a party in case of losing your social standing. And a want to do everything at once to feel included.

"FOMO is the pressure of never wanting to turn your phone off in case of a missed notification or refusing to turn down an invite to a party in case of losing your social standing. A want to do everything to feel included." Share on X

And the feeling of FOMO is intensified as we bear witness of friends, family and acquaintances having a brilliant time via social media.

The Fear of Missing Out Becomes A Way of Life When Living With Chronic Illness

Living with a chronic illness often hinders you from going out, forced to stay inside and observe the fun of the outside world from our screens. As such, FOMO is not just a feeling but becomes a way of life.

There isn’t anybody that would wish to miss out on experiencing the joy of being part of celebrations in the lives of friends or family. Nobody wants to feel left out or feeling they are experiencing life behind a screen. We want to be experiencing life, instead of merely being a bystander to everything it has to offer.

"Living with a chronic illness often hinders you from going out, forced to stay inside and observe the fun of the outside world from our screens. As such, FOMO is not just a feeling but becomes a way of life." Share on X

But when living with a chronic illness, and the unpredictability that it brings, missing out becomes another new reality. The existence of FOMO and its presence in this new life is something else we must grieve and learn to accept.

Social Media although connects us with others all over the world, can cause FOMO as we see evidence of the fun that everyone else is seemingly having in our absence. — Social Media connects us with others all over the world, but can often make us realise that our world has become so much smaller because of chronic illness

Staying in the confines of our home becomes a necessity, not a choice. There is no real choice as debilitating, and relenting symptoms continue to ravage the body. Symptoms so out of control that the prospect of going out feels like an impossible challenge. So, staying in, it becomes; forced to become a spectator of missed fun as we scroll through our social media feeds.

"Symptoms often become so out of control that the prospect of going out feels like an impossible challenge. So, staying in, it becomes; forced to become a spectator of missed fun as we scroll through our social media feeds." Share on X

But perhaps FOMO is inadequate to describe the depths of feelings it provokes in those living with chronic illness. It’s not fear, but feelings of sadness, angst, regret and anger at chronic illness for it taking so many things from you, lost forever.

The Guilt of FOMO

If the sadness and disappointment that FOMO creates aren’t enough to contend with, unfortunately, it is also accompanied by guilt. The guilt for bot being able to make it to a friend’s birthday celebration, or a wedding. Guilt, for not only not attending, but also knowing the disappointment felt by those whose celebrations we are missing.

As we sit at home, missing out, we torture ourselves, thinking that if only we pushed ourselves a little more, we could have gone. The reality is, however, is if we had pushed ourselves, it would only result in exacerbating symptoms, making the situation worse. The truth is, we are forced to miss out on things because we are not well.

"Pushing ourselves to attend events although will oust the guilt of not going, often results in exacerbating symptoms and make us feel even worse. The truth is, we are forced to miss out on things because we are not well." Share on X

FOMO shines a mirror on our old life, the normal that used to be our reality. And it reminds us that chronic illness and our fragile bodies have decimated normal, emphasising this new reality and our new life of missing out.

Chronic Illness Inconveniences, and Not Only For The Person Living With It

As this new reality continues, symptoms persisting and enduring further FOMO, a new consequence of always cancelling and missing out becomes evident.

If unable to attend events and celebrations, and forced to cancel at the last minute again and again, then consequently people will stop inviting you to stuff.

Chronic illness and everything that it brings and takes away is an inconvenience and not just for the person living it. And so, whether to make it easier for them or us, invitations are no longer given. It hurts being seemingly cut out of the lives of those we care about, with no regard to our feelings.

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From FOMO To FOGO

Ironically, another consequence of FOMO is the development of FOGO. What is FOGO, I hear you ask? It’s the Fear of Going Out. After cancelling and not being able to make events, a fear of making plans and going out evolves. Furthermore, after spending so much time indoors, in the comfort and safety of home, it can be anxiety-provoking when venturing outside again.

There is an anticipation that a flare-up of symptoms will result in the cancellation of plans of going out. The mere thought of going out starts to become unobtainable. And in the unlikely event going out is an option, a fear of becoming ill comes into existence. It is preempting a flare of symptoms before it’s even become a reality.

"In the unlikely event going out is an option, a fear of becoming ill comes into existence. It is preempting a flare of symptoms before it's even become a reality." Share on X

The fear of going out, however, does not equate to me not going out when symptoms allow me. The reality of living with a chronic illness often leads to overanalysing and questioning every decision made. A worry exists that the very act of going out will lead or exacerbate symptoms.

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Feeling Unsafe; a Prisoner In An Unpredictable Body

FOGO develops as a result of a loss of self-confidence. The neurological condition I live with recently has recently caused weakness, debilitating trembling in the legs, and falls. In recent weeks, I have regularly been finding myself on the floor, as legs give way with no warning. Such symptoms have made me feel unsafe and afraid of my own body. And no longer confident in my body’s ability to keep me safe and free from harm.

"Debilitating and unrelenting symptoms have made me feel unsafe and afraid of my own body. And no longer confident in my body's ability to keep me safe and free from harm." Share on X

Continually living with severely trembling legs, acutely aware of the unpredictability of such symptoms. Recognising that at any moment they could suddenly stop working and collapse causes anxiety, especially when it involves leaving home and the safety of our comfort zone.

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Falling over hurts, no matter how many times you have experienced it, it still hurts. And falling over in public can be even worse, especially with the feel of eyes of people staring. The awareness of that it could happen when we next go out, unable to stop it, it can often be easier not to go out at all.

"Falling over hurts, no matter how many times you have experienced it, it still hurts. And falling over in public can be even worse, especially with the feel of eyes of people staring." Share on X

Chronic Illness Creates Fear and a Fear of Going Out

Living with a neurological condition and such unpredictable symptoms create fear of the unknown as well as what could happen. A knowledge exists that the ‘what could happen’ is very likely to happen again, but not when can frighten.

All the accompanying symptoms of FND make me fear my own body, waiting with bated breath for the next fall or accident. We live inside unpredictable bodies that don’t work as they should – trapped inside a body that keeps us from living. And the worst thing is there is no escape – no relaxing holidays from the debilitating symptoms that suddenly pop-up every day. Sometimes there’s even no cures for them, or little in the way of effective treatments. And we become scared; scared of getting worse and becoming sicker and frailer. We don’t feel safe.

It creates fear and a fear of going out.

"We live inside unpredictable bodies that don’t work as they should – trapped inside a body that keeps us from living. And the worst thing is there is no escape. It creates fear and a fear of going out." Share on X

A Chronic Life: The Grief of FOMO & FOGO

When chronic illness creates the 'fear of missing out' and the 'fear of going out'

In Chronic Illness

A Chronic Illness Edition of Snakes & Ladders

September 8, 2019 2 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This month, I will be musing on how this chronic life is very much like playing a continuous game of the classic board game ‘Snakes and Ladders.’

Life With Chronic Illness Is Like A Game of Snakes and Ladders

Do you sometimes feel that you are winning in life; landing on the bottom rung of a ladder, climbing further and further toward success and fulfilment. But only then for life to take a sudden downturn. Landing on a snake and forced to slide downwards toward despair.

Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak.

"Yes, life, and especially life with a chronic illness is much like a real-life version of snakes and ladders. The symptoms, like the snakes on the game board, lie in wait to ruin our lucky streak." Share on X

Unfortunately, during recent weeks, I have been finding more snakes than ladders in my chronic edition of the classic board game.

When living with chronic illness, and its numerous symptoms that affect us it can feel like continually finding the snakes in a game of ‘Snakes & Ladders’

Once again, the weakness and trembling in the legs have become worse. I have been finding myself on the floor, again and again, after my legs give way with no warning. Living with a neurological disorder is continually finding new bruises but having no clue of where they have come from, or how we arrived to develop them.

As such, I am also finding a significant decrease in my self-confidence. The weakness, debilitating trembling and the falls have made me afraid of my own body; no longer confident in its ability to keep me safe and free from harm. Fear causes tentative steps toward the unknown, toward unpredictability. And it is never-knowing when my legs will next decide to collapse from under me suddenly.

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The Anxiety That Accompanies Illness and The Fear of What Could Be

Going out with trembling legs, aware of the unpredictability of such symptoms, and recognising that my legs could suddenly stop working at any moment causes anxiety. A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen.

"A consequence of living with a long-term and its symptoms is fear. Illness creates a fear of the unknown as well as a fear of what could happen." Share on X

The knowledge that the ‘what could’ happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built.

"The knowledge that the 'what could' happen is very likely to happen but not knowing when can frighten. The unknown invokes anxiety when needing to leave the comfort zones we have built." Share on X

Every Day Needing To Find Our New Limits

Time and time again, I have discussed how life with chronic illness never changes; every day feels like the day before. That living with chronic illness can feel like you are living your version of Groundhog Day. The truth is, however, that not every day is the same; symptoms can come or go, or they can remain stable or get worse. In regards to the symptoms that accompany the disorder with which we live, every day is a blank slate.

Able to do that thing today? No idea! Only by research can we tell our capabilities for the day ahead. Photo by Emily Morter on Unsplash

And as such, each day we wake, not knowing the limits or abilities that we possess, and the restraints that illness now poses. So every day requires researching what our body can handle and what we can and cannot do. Tentative and careful steps every morning as hasty research into the current levels of pain. Or the current rate of mobility. A ritual performed every day even with the dreaded knowledge that it could change within a blink of an eye. There is a relief when the research suggests low levels of pain and relatively good mobility. But on the days where the pain is crippling, and walking short distances is difficult, we face the day with dread and apprehension.

Inability To Enjoy ‘Dates’ When Suffering Disabling Symptoms

Living with such debilitating and limiting symptoms means that dating is on the last thing on my mind. And it even if it were, I often feel that nobody would be interested in me. I often feel like a burden and not good enough. Being stuck in the house the majority of my time, due to disabling symptoms, when I do go out, I like to think of the trips as ‘dates‘ from my prison cell.

Although I appreciate these ‘dates’, and the time away from home, I have been unfortunately struggling with them lately, not enjoying them as I once did. It is challenging to enjoy days out when legs are trembling so badly and feeling completely weak that they might collapse at any moment.

Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. Afraid that today will be the day when legs will give way and suffering a humiliating fall in public. It’s enough to make you want to stay inside the safety of our comfort zone where our ‘dates‘ can include watching a film on the sofa instead.

"Being afraid and unsafe in your own body also makes you feel frightened and unsafe when venturing outside our comfort zone. It's enough to make you want to stay inside the safety of home." Share on X

Sometimes the only date that my fragile body and wobbly has the energy for, unfortunately!

And then there’s the overwhelming fatigue that such symptoms cause. The mere thought of going out even for a short while seems like being asked to climb Mount Everest. I was recently reading about the potential capabilities of energy recycling. A process where the energy that would otherwise be wasted and converting it into electricity or thermal energy -thereby enabling us all to reuse energy. It left me wishing that I could reuse lost energy which would allow me to do so much more than I can do currently.

"Oh, how I wish we could reuse energy something that would allow me to do so much more than I can do currently." Share on X

There May Be Snakes Now, But There Still Will Be Ladders Too

As I recount on the journey of living with a neurological disorder, there have been highs and lows. Unfortunately, like when living with any long-term health condition, the lows have outweighed the highs. In this life of ‘Snakes and Ladders,’ I continually seem to keep landing on the snakes, causing me to travel further from the place I want to be. Despite this, however, I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes.

"I know there will be ladders ahead, that will propel me forward and into the stratosphere (and success). Until then, I will have to continue rolling the dice and trying to avoid those dreaded snakes." Share on X