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In Chronic Illness

To My Pain

April 20, 2019 4 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 April, and because for several weeks I have been experiencing a severe pain flare, I would use the prompts to write a letter to my pain.

To My Pain

Yes, I have addressed this letter to you, ‘my’ pain and not just pain. I know pain is felt by many. Perhaps if you were benign, harmless and temporary, I would have only addressed it to pain. But you’re not, you’re persistent and chronic, becoming a significant and permanent part in my life. You have become another part of me, so I think I can refer to you as ‘my pain.’ The pain I feel, the pain you make me feel, is personal to me; something that is felt by only me, remaining invisible and unknown to everyone else.

"Pain is deeply personal to the individual. We do not feel the same pains. It remains invisible and unknown to everyone around us." Share on X

Living with constant and debilitating pain is tiring…well more like exhausting!

What’s it like to live with you, you ask? Well, it’s tiring. Wait, it can be so much more than tiring. It’s exhausting. For weeks now, the excruciating and debilitating as it’s worst, there have been no breaks, no respite from the torment you have been inflicting on me and my life.

"Living with chronic pain is always tiring; exhausting even. Pain allows for no breaks, no respite from its torment." Share on X

You, which has become a sharp, electric shock type of sensation throughout my spine and legs, and one which has prevented me from getting to sleep, or on other occasions waking me from sleep. Getting a decent amount of sleep has therefore been hard to come by. And it has only made these last few weeks even more tiring as a result.

The impact that you have on those you blight spreads far and wide. The heightened levels of pain you have caused me has also added anxiety in my life. At times, I have become so overwhelmed and incapacitated by you that I can find myself unable to function. Physically, it can cause my legs to buckle before giving on me unexpectedly, giving me little time to react. You can also cause brain fog; causing me to remember important information or losing words I am searching for amongst a cloud of thick fog. The added stress and anxiety has become tiring, this constant worry about when this sudden loss of being able to function will occur, even the fear of going out in case of such an attack.

curled up in a foetal position because of pain

It’s tiring having to deal with setbacks that you create; the impediments created by your overwhelming urge to show your continued dominance, causing yet another dreaded flare. The continued knocks to our self-confidence as we once again begin to question our abilities and what we are capable of on any given day.

"It's tiring having to deal with setbacks from chronic pain; the impediments created by its overwhelming urge to show its continued dominance, causing yet another dreaded flare." Share on X

Through difficult times comes the opportunity for educating

Through the exhaustion and tiredness that you create, however, is also the opportunity for educating ourselves about you and what methods we can implement to calm and lessen the effect that you have on my life.

It reminds me of the quote ‘A smooth sea never made a skilled sailor.’ Meaning that through the tough times that you cause, we can learn more about what helps and what doesn’t to come up with a more effective pain management plan for the future.

Time and time again I’m reminded that pain is uncontrollable. You like nothing more than to show your power and dominance, and where there is nothing I can do to quieten your reign of terror. To try and control you, would prove to be futile, and waste precious energy I don’t possess. The only thing I can do therefore is to learn ways to manage your existence.

"Time and time again I am reminded that chronic pain is uncontrollable. Liking to show it's power and dominance. We can only learn ways to manage its existence." Share on X

I have been educating myself on alternative methods to manage you and your unwelcome presence. I have been mainly looking into CBD oil and the positive effects it can have on you, on pain. And I have been learning that there is certainly a lot to educate me about concerning CBD oil!

At the receiving end of your wrath…

Until I take action however, I continue to be at the receiving end of your anger and wrath. Especially at night, when there are no distractions to be found to help ease the burden of pain. I’m forced to receive your attempts to enforce insomnia, as well as the debilitating pain.

And unfortunately sleep does not come, and when I awaken, I observe incredibly dark circles under my eyes. My reflection was expressing the lack of sleep that I received the night before. The need to rejoin the real world calls, I depend on concealer and blusher to disguise the physical effects that you bequeath.

"Living with chronic pain and it's invisibility we are often at the receiving end of judgements and suspicion; believing that we are faking being sick when in fact we are faking being well." Share on X

You are mostly invisible, but disguising the only physical evidence of your existence, I am at the receiving end of judgements and suspicion. When people cannot see something, they often deny its reality. In the case, of illness people assume that we must be fabricating our supposed illness; that because we look healthy than we must be so. What most people cannot comprehend that we are not faking being ill, but are instead faking being well.

I'm not faking being sick' I'm actually taking being well

As much as pain has taken it has also been giving…

I could write a long list of what chronic pain has taken from me, such as loss of independence as one example. However, pain has also been giving me little gifts that are important to remember and appreciate.

"As much as chronic pain has taken from me, it has also given me many gifts and taught me many valuable lessons." Share on X

Chronic pain has taught me some valuable lessons that make it easier to bare living with you every day. You have allowed me to learn things about myself that I may have never learned otherwise. Giving me the knowledge that I’m stronger than I ever thought; the training to be better prepared to face difficult situations as well as future flares. Pain has also given me patience. When experiencing a chronic pain flare, although exceptionally unpleasant, I know there will be an end. I need to wait it out, thus requiring patience.

"Pain has taught me patience. Something I've needed when experiencing a chronic pain flare; knowing there will be an end, I need to wait it out." Share on X

Quieting…

I am now calling on patience now as I wait on this current chronic pain flare to cease and subside. Oh, I know that you will inevitably return but right now I am waiting on you to quieting down the strength of the power you hold over my body. Waiting on the day to which your volume has quietened enough for me to be able to continue with my life without your constant influence.

Regards

Me, Rhiann.

April Link-Up Party with A Chronic Voice

In Chronic Illness

Blooming Despite Adversity…

April 13, 2019 4 Comments

During Adversity, We Look For Inspiration

Waking this morning in unendurable pain, I felt incredibly discouraged. Unable to get out of bed due, I immediately grabbed my iPad, for much-needed positivity and inspiration.

On my Pinterest feed, I have a board entitled ‘Positivity.’ A board filled with beautiful and inspiring words that would fill even the melancholy of hearts with positivity. The board has an eclectic mix of quotes, from famous scholars to quotes from books and films. There is a quote for everyone.

‘The Flower That Blooms In Adversity Is The Most Rare and Beautiful Of All’

Scrolling through the many quotes that exist on the board, one immediately caught my eye. It read ‘The flower that blooms in adversity is the most rare and beautiful of all.” The quote above is from the Disney film Mulan. It is thought, however, the basis of the story is that of the Plum Blossom. The plum blossom is the earliest blooming flower that grows in China.

'The flower that blooms in adversity is the rarest and beautiful of all' is such an exquisite quote that encapsulates those who experience chronic illness wonderfully." Share on X

It does not wait for the sun and warmth of Spring to arrive before it blooms. It thrives in the winter before the leaves of the tree have fully formed. The people of China are thought to be proud of what the flower represents. The plum blossom has been the inspiration of many poets and artists for centuries.

the flower that blooms in adversity is the most rare and beautiful of all text with flowers wrapped around the text and flowers bordering the image

A flower will easily bloom given the perfect conditions; it is easy. A flower that grows despite bad and adverse conditions is unique and more beautiful because by all rights it shouldn’t have bloomed at all. The same principle can apply to people.

"A flower that grows despite bad and adverse conditions is unique and more beautiful as by all rights it shouldn't have blossomed at all. The same could be said for people." Share on X

Those who live through adversity and hardships is unique and beautiful because of them. Mulan is considered a heroine due to her overcoming the problems caused by her not conforming to the cultural standards of being a woman. And also due to the difficulties, she faces from serving in the army as another gender and eventually saving China from the Huns.

The Insecurities of Living With Chronic Illness

Everyone lives with insecurities. But, when living with a chronic illness, these insecurities grow exponentially. We feel sick the majority of the time which strips our self-confidence and sense of self-worth away. The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent.

"The journey of permanently coping with pain, illness is long and arduous, continually changing our bodies and our identities as the worsening symptoms become permanent." Share on X

But it is not only insecurities surrounding our bodies and our perception of beauty that we have to confront. There are many insecurities regarding everything outside of our comfort zone. Anything new and unfamiliar become frightening and overwhelming. After losing so much to pain and illness, we learn to self-doubt our abilities, and what we are capable of, a world where saying no is more comfortable than the anxiety-inducing prospect of what could be. We begin only to see our struggles and start defining ourselves by them.

"After losing so much to pain and illness, we learn to self-doubt our abilities, and what we are capable of, a world where saying no is more comfortable than the anxiety-inducing prospect of what could be." Share on X

There’s Strong, and Then There’s Chronic Illness Strong

What we forget, however, is the number of times we have gotten back up after being knocked down by illness. We get knocked down time and time again, but still, we rise. And when we are back on our feet, although it may not seem like it, we are stronger and more resilient than before. We begin to thrive and bloom when pushing past our demons, accomplishing things we may have never thought possible. However, despite all this, still radiating positivity and happiness despite the harsh conditions of living with a chronic illness.

"We forget the number of times we have gotten back up after being knocked down by illness. We get knocked down, time and time again, but still, we rise. Stronger and more resilient than before." Share on X

Yellow, blue and green watercolour background and text which reads there's strong then there's chronic illness strong

It is easy to go into survival mode when diagnosed with a chronic illness. To use disease as an excuse for everything that is wrong with life, or complaining about the impact it is having. However, in my experience and witnessing numerous people challenging their experiences into writing and advocacy and celebrating wins and precious moments, choosing to see them as blessings and not a right. It is these ‘rare flowers’ that can appreciate even the smallest blessings in life, yet able to enjoy them during times of great adversity.

"It is 'rare flowers' like those I have met in the chronic illness community that can appreciate even the smallest blessings in life, yet able to enjoy them during times of great adversity." Share on X

Thriving Even In Adversity

Perseverance is key to being able to flourish and bloom in any area of life. But perhaps more so for those living with chronic illness. To continually thrive despite limitations and restrictions that such illnesses place upon us is no easy feat. But still, we don’t give up, and we continue despite debilitating symptoms. Never giving in to the demands of such bothersome symptoms, determined never to utter the words no.

"But still, we don't give up, and we continue despite debilitating symptoms. Never giving in to the demands of such bothersome symptoms, determined never to utter the words no." Share on X

To thrive and not just survive life with a chronic illness, we must learn to listen to our bodies. To learn to balance our sheer determination versus that of the demands of the symptoms that vex us. And to recognise when we need to say no to something rather than the desire of wanting to say yes. Learning to do so, although it can be irritating can decrease the number of severe flares, increasing the opportunities for more fun. It can be tempting to rebel against the restraints that illness has but to flourish we need to learn to cooperate.

"It can be tempting to rebel against the restraints that illness has but to flourish sometimes we need to learn to cooperate with the symptoms and ultimately our bodies." Share on X

J.K. Rowling once wrote, its words uttered by her profound and philosophical character Professor Dumbledore. He said, “It is our choices that show what we truly are, far more than our abilities.” A favourable attitude is crucial for those who are chronically ill; our ability to thrive and grow is contingent on the choices we make. We can choose who we are going to be regardless of where we are.

"A favourable attitude is crucial for those who are chronically ill; our ability to thrive and grow is contingent on the choices we make. We can choose who we are going to be regardless of where we are." Share on X

Community: A Garden of Rare and Beautiful Flowers

The beautiful and rare flowers within the chronic illness community see opportunity even within the most adverse situations. When limited to bed, for example, we see a chance to relive happy memories. Or to catch up on something on our ‘I must get a chance to get round to that’ list. To thrive, we focus on what we can do instead of that which we are unable. I try to embrace times of forced bed rest as an opportunity to catch up on films or television programmes I have meant to watch but just haven’t found the time to do so. It was during such a time that I stumbled upon the very quote that inspired this post. Inspiration often comes from the most unexpected of places.

"I try to embrace times of forced bed rest as an opportunity to catch up on films or television programmes I have meant to watch but just haven't found the time to do so." Share on X

Every Flower Must Grow Through Dirt

It may often feel that the burdens of illness that are always present in our lives, it may feel that they have buried us. Unable to escape or grow due to the new constraints that it has placed in our lives. However, it does not have to be this way. It is possible to plant ourselves in the dirt and to grow roots and allow ourselves to bloom and thrive even in adversity. After all, every flower must grow through dirt.

"It is possible to plant ourselves in the dirt and to grow roots and allow ourselves to bloom and thrive even in adversity. After all, every flower must grow through dirt." Share on X

I am dedicating this post for all those who are stuck in the darkness. For all those who are only aware of the insecurities arising from living with illness. Know that you have the same abilities from your life before sickness and you are still capable of so much. You can thrive and bloom despite the restrictions from constant and unrelenting symptoms. You can become a rare and beautiful flower despite adversity. It is for those within the chronic illness community who continue to support and comfort for those in need in spite of their suffering.

field of white, pink and yellow tulips underneath a pink background with blooming despite adversity written

In Chronic Illness

Celebrating Birthdays With Chronic Illness

March 8, 2019 17 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. Because March is also the month where my birthday falls, I thought I would use this month’s prompts to discuss the impact of celebrating birthdays when living with chronic illness.

Failing at Life Because of Illness

Failing: Noun. An act or instance of failing; failure.
2. A defect or fault; shortcoming; weakness

March is a busy month in the household, with both my Mum and I celebrating birthdays during these thirty one days.

Like many living with a chronic illness, birthdays, although as much as they are often enjoyable they can also prove to be bittersweet.

"When living with chronic illness, birthdays can be bittersweet as it is a reminder that we have lost another year to it." Share on X

Birthdays can be a time of reflection. To reflect on the year since we celebrated our last birthday. And reflecting on life, that we have led since our birth, and the life we thought we thought we would have had. As such, it is often a painful reminder that we have lost yet another year to chronic illness.

Living with chronic illness it can feel as though time has frozen; our lives stuck on pause when everything moves fast and everyone’s lives continue unheeded

Chronic illness is like a kidnapper, holding you hostage, unable to escape. It forces you into isolation, with limited access to the outside world. Time has frozen, and our lives are stuck on pause while the outside world moves fast and everyone else’s life continues unsilenced and unaffected by illness’s grip.

"Time can often feel it's frozen. That our lives are stuck on pause while the outside world moves fast, and everyone else's lives continue unsilenced and unaffected by chronic illness." Share on X

As such, we can believe that we are failing. It feels like we are failing; that we are a failure because of everything we are unable to do and failing because of the lack of independence and the need to be reliant on others.

Our minds falsely makes us believe that we are failures; that we are somehow less than because of the debilitating effects of chronic illness.

Succeeding Past The Limitations of Chronic Illness

Succeeding: Verb. To thrive, prosper, grow, or the like
2. To come next after something else in an order or series

However, perhaps we need to change how we view our circumstances.

Instead, of regarding birthdays as a reminder of what we have lost because of chronic illness, perhaps we need to celebrate another year of surviving. That we are succeeding despite the limitations that chronic illness enforces on us.

To acknowledge the successes and everything that we haven’t lost because of our conditions. Often the progress seen when living with chronic illness is slow and can often feel as if we are not making any progress at all.

"We are succeeding over pain and illness whenever we triumph over the limitations they impose upon our life. We are taking control back from chronic illness whenever we achieve anything despite the constraints they inflict." Share on X

But the truth is, we are succeeding over pain and illness whenever we triumph over the limitations they impose on our lives. Whenever we achieve anything despite the constraints that it inflicts we are taking back control chronic illness already has.

Whenever we triumph over the many hurdles blocking our path because of the symptoms of chronic illness we are succeeding despite it

We are succeeding when we decide to make the most of the life we have now instead of wishing we were well, or waiting until we are well until we start to live life again.

This year I succeeded over the neurological condition I was diagnosed with by going on another cruise, making the most of it despite debilitating and excruciating pain. Also, I overcame the anxiety and apprehension that the condition can cause to book a trip to the Harry Potter Studio Tour in London. At times, both were extremely difficult but was proof that I was living my life despite my diagnosis and was stronger than the hold it has over me.

Pausing and Reflecting on Life and on Getting Older

Pausing: Noun. A temporary stop or rest, especially in speech or action
2. A cessation of activity because of doubt or uncertainty

Taking a breath and reflecting on my life, it feels like life is pausing. On hold. It is although life is still the same as it was when I last celebrated my last birthday.

Still, I am persecuted by the same symptoms as last year: no improvement and no progression in other areas in my life. Another year passing, and so does the hope of recovering. When living with chronic illness, it often feels that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant. I desperately want to take back life away from pain and illness. Instead, I feel stuck and disheartened.

"It can often feel that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant." Share on X

woman staring out of a window — Birthdays give an opportunity to pause and reflect on our lives and to the future. Doing so, when living with chronic illness, however, it can often be met with anxiety and apprehension due to the many unknowns

When I pause and look toward the future, I do so with a sense of anxiety and apprehension. I fear whether there will be further deteriorations in the symptoms and my condition that will further erode the little independence I have currently. Wondering what life will look like, often wishing that I sometimes could see it in a crystal ball but worry what I will witness if I do.

"When I look to the future, I do so with anxiety and apprehension. I fear there will be further deteriorations in the symptoms I experience and that they will further erode the little independence I have currently." Share on X

I try and not to dwell on the what ifs, however, and instead try and pause and appreciate on what I do have. To give thanks to loving and supportive parents, that do so much but ask for little in return. The friends in my life both in real life and those I have met online. To welcome and acknowledge the beautiful and heartfelt messages of support and thanks on my blog, and to recognise the impact my words has had on those who have read them.

Deciding on A Path To Celebrate

Deciding: Verb. To solve or conclude by giving victory to one side
2. To determine or settle (something in dispute or doubt)

As I sit in my bedroom, currently disabled by pain and weakness in my legs, and thus affecting my mobility, I am deciding on how to celebrate my birthday next week.

It is hard as anyone living with an unpredictable health condition will know, planning can prove to be extremely problematic. What will tomorrow look like for us?

"I am deciding how to celebrate my birthday…When living with a never-ending condition; however, it can be problematic as we have no idea what tomorrow will look like for us." Share on X

How will I feel on the morning of my birthday? Will the pain, fatigue and mobility problems be kind enough to me to allow me to celebrate as planned?

There are often many different paths we can take when living with pain and illness, and it can often be difficult to decide which to take

These are the questions that we are silently asking in our minds, but have no answers. There are no crystal balls that we can consult to help us decide on a particular path. If I were to browse my diary, so far most of the entries recorded are marked with a question mark. It is a symbol of the many unknowns of life with a never-ending illness.

"In my diary, many of its entries are recorded with a question mark. It is a symbol of the many unknowns of life with a never-ending illness, including our future capabilities." Share on X

It’s not only my birthday that falls during March. My Mum also has her birthday this month, and Mother’s Day also occurs in March. As a result, I am deciding not only what to buy as presents for both these occasions, but also how am I going to buy them. Do I currently have the energy and sufficient mobility to walk around and browse many shops? Or should I forego physically visiting stores and take advantage of the many benefits of online shopping?

Thriving and Not Just Surviving Life with Chronic Illness

Thriving: Verb. To prosper; be fortunate or successful
2. To grow or develop vigorously; flourish

When going through a flare, or incapacitating troubles associated with chronic illness, it can often feel that every day we are merely surviving. But we don’t want to endure; we want to thrive despite the numerous limitations that chronic illness brings with it.

"We don't want to endure and survive; life with chronic illness. We want to thrive despite the numerous limitations that they bring with it." Share on X

But perhaps it only feels that we are merely surviving. Perhaps our minds are deceiving us to make us believe we are just surviving. Maybe we are thriving despite what we are led to believe. We are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality.

"However, we are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality." Share on X

To thrive sometimes involves letting go of what we cannot control, and only worrying about the battles that we have a chance of winning. Thriving is celebrating the even smallest of accomplishments, and appreciating the sheer effort and courage it took to achieve them.

To thrive with a chronic illness means that we have to let go of everything that we are unable to control and only worrying about those battles that we can win.

To grow and succeed is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain.

"To thrive is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain." Share on X

I am continuing to thrive despite all of the limitations and difficulties that this neurological disorder places in my path. On this birthday I will take the opportunity to reflect on everything I’ve done despite constant and debilitating symptoms. I will celebrate making it to another year. And although this is not the life that I had imagined for myself, I am determined to embrace and celebrate the life I do have.

In Chronic Illness

Hiding Behind a Mask

February 27, 2019 4 Comments

Waking After a Night of Painsomnia

This morning, I awoke with a start as the alarm started to blare signalling the beginning of a new day. Except, that my day started many hours before. When the bell began to sound, however, I had only managed to grab a couple of hours sleep.

Why? Because of painsomnia.

How living with painsomnia feels when it leaves you with an inability to sleep!

Painsomnia is the lack of sleep or inability to obtain sufficient sleep because of physical suffering, like chronic pain. And when living with permanent chronic pain, painsomnia becomes just another symptom of living with a neurological condition.

"Painsomnia is a lack of sleep or inability to obtain sufficient sleep because of pain…it's another symptom of living with a chronic illness." Share on X

The ‘Sick’ Appearance Staring Back At Me

Stumbling to the bathroom due to stubborn and uncooperative legs, I take a look in the mirror. The first thing I notice as I study my appearance is the dark circles and bloodshot eyes. These, a visible reminder of the crippling pain and the subsequent lack of sleep. Neurological disorders, such as the one I live with is classed as being invisible, a condition that is not readily visible to others. As I looked hard at my ashen complexion and the dark circles under my eyes, I realised that I looked sick. It appears that sometimes our conditions are not as invisible as the term suggests.

"I realised that morning I looked sick…our conditions are not as invisible as the term suggests." Share on X

pink flowers make-up bag with benefit brightening and airbrush concealer with hand mirror sitting in front of it — Make-up such as concealer (my current favourite being the Benefit Brightening Concealer which works miracles on my worst days!) allows us to wear a mask of disguise when feeling the effects of chronic illness. What products do you love to use to create your mask?

A Sick Day?

If I had the luxury of staying at home, then I would have afforded myself a duvet day. A duvet day to allow me the opportunity to provide care for myself. To partake in those behaviours that make me feel better. However, today happens to be one of the two days I am out with my carer. And although I could have cancelled, I had errands that needed fulfilling.

So what could I do?

Well, after battling with my legs to be able to shower and accrued enough energy to get dressed, I grabbed my make-up bag. I snatched my favourite and ever faithful concealer, dabbing it under my eyes to hide and obscure those stubborn bags. I apply a little foundation and blusher to give me some colour, and so I don’t look like an extra from The Walking Dead.

Hiding Behind A Mask

The make-up I apply allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can pretend that I am well. A persona whereby I can inhabit a world of being well. A world in which I am not in constant pain.

"Make-up allows me to construct a mask. A mask that I can hide behind away from pain and illness. A persona whereby I can inhabit a world of being well." Share on X

image of freddie mercury with lyrics from 'the show must go on' written underneath — Lyrics from the amazing ‘The Show Must Go On’ by Queen. One of my all-time favourite songs and lyrics which I am able to relate to when experiencing a bad flare day!

But we don’t put on a mask purely for vanity reasons. We also assume a different persona in consideration for those around us. We put on a brave face, hiding pain and the effects of other symptoms to alleviate the worry and burden on those closest to us. When out in the world, conversing with those we don’t know or don’t know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike.

"When out in the world, conversing with those we don't know or don't know we are sick, then we may slip on this mask to avoid questions when symptoms suddenly strike." Share on X

There is always a worry that we focus too much on our illness and its symptoms. A concern that others may think we sound like a broken record complaining about pain and everything else that accompanies illness. Therefore, the most natural path to avoid this is to mask the pain and discomfort that coexists with our ailments. There is also something quite liberating about donning a mask, a way of forgetting about our sick identity; enjoying a rare slice of normalcy. There is a word for those who hide their pain behind a smile; this is ‘eccedentesiast’. And those of us living with chronic pain and illness we become masters at this.

woman holding a clear glass jar in the shape of a head in front of them — Living with chronic illness and chronic pain we become masters of disguise; hiding behind a mask to disguise the effects they have.

"There is something quite liberating about donning a mask, a way of forgetting about our sick identity; enjoying a rare slice of normalcy." Share on X

The Need of a Mask to Hide Pain and Illness

Pain and chronic illness are a permanent fixture in our lives, however, and as such wearing a facade is challenging to maintain day after day. But sometimes our conditions overpower us, and our masks slip, revealing the pain, fatigue, and misery hidden beneath the false exterior.

"But sometimes our conditions overpower us, and our masks slip, revealing the pain, fatigue, and misery hidden beneath the false exterior." Share on X

If you look closely, you can see the pain etched on my face by the grimace that appears. By the fake smile that I give which doesn’t reach my eyes. The dullness that is apparent in my eyes; the lack of sparkle or brightness that is recognisable when pain isn’t present.

Sometimes Hiding Behind A Mask Doesn’t Work As It Begins to Slip

When our masks slip, and the pain and the emotional effects of illness are exposed, it can make us feel vulnerable. We fear the judgement of others; worry that they will misunderstand the tears as a sign of depression. Or we are insecurely waiting for those well-meaning comments regarding the need to remain positive in the wake of something they will never understand. Worry that will others see those tears and other visible indicators of pain and illness as a sign of weakness. The mask we wear, we do so to hide from the judgements of others just as much to conceal pain and illness.

"When our masks slip, it can make us feel vulnerable. The mask we wear, we do so to hide from the judgements of others just as much to conceal pain and illness." Share on X

a person holding a red piece of card in front of their face with a frowning face — Sometimes hiding behind a mask doesn’t work as masks slip and the pain and other emotional effects of living with symptoms of a chronic illness are revealed to others, making us feel vulnerable and judged.

Living with a chronic illness, we often already spend a lot of time at home. It in itself can become uncomfortable; itching to want to break free from the confinement and explore the world. But, our homes are often a sanctuary, the one place we feel comfortable to discard the mask and show our truth.

So let us not be ashamed or made to feel weak because of the masks we wear. Let us not feel weak or vulnerable when they slip off to reveal the reality of pain and illness waiting underneath the facade. It is not a sign of weakness; it instead empowers us to prevail regardless of what happens or what is in store in the future.

"Wearing a mask is not a sign of weakness; it instead empowers us to prevail regardless of what happens or what is in store in the future." Share on X

Hiding behind a mask is not a sign of weakness but rather an act of self-preservation.

"When living with a chronic illness hiding behind a mask is not a sign of weakness but rather an act of self-preservation." Share on X

Hiding Behind A Mask Cover Image - decorated mask looking in a mirror

In Chronic Illness

Finding Beauty in Life With A Chronic Illness

February 16, 2019 7 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.

As it’s February and generally considered the month of love, I thought I would use this month’s prompts to discern ways we can find beauty and love life despite the significant cost that chronic illness has on our existence.

Adjusting

Adjusting: Verb. Alter or move (something) slightly to achieve the desired fit, appearance or result

The first step to rebuilding life in the wake of a life-changing diagnosis is acceptance. Only by accepting the diagnosis can we then move forward and build a happy and content life despite the unwelcome changes that accompany chronic illness.

"Being diagnosed with a chronic illness is akin to being given new puzzle pieces that we have to learn to fit into our personal jigsaw." Share on X

After acceptance, we can then make adjustments to make room for chronic illness into our new life. Being given a diagnosis of a long-term health condition is akin to be handed new jigsaw pieces. These new jigsaw pieces don’t initially fit the canvas that makes up our lives. Therefore, adjustments are required to install these pieces into our life puzzle.

Being diagnosed with a chronic illness is like being handed new puzzle pieces that we have to attempt to fit in with our life.

Life with a chronic illness requires constant adjustments. Adjusting to a never-ending list of symptoms as new ones develop. Adjusting to new medications and the awful side-effects that accompany them. And adjusting to the new and ever-worsening version of ourselves.

"Life with a chronic illness requires constant adjustments. Adjusting to symptoms, new medications and the awful side-effects that accompany them. And adjusting to a new version of ourselves." Share on X

Adjusting to a new identity, the expectations for ourselves all in order to find a new normal.

Hoping

Hoping: Verb. Want something to happen or be the case

When first diagnosed with a chronic illness, we hope that it will go away. That one day we will wake from a deep sleep, and everything will go back to what it once was.

When we realise and accept that this is merely a pipe dream. And after we had made necessary adjustments to find a place for our new diagnosis, hope evolves into something else.

Although we know a cure is never going to materialise, that we will never get better we never stop hoping nevertheless. We hope that there will be improvements, a hope that life will get better regardless of the permanency of illness.

"Without a promise of a cure, we don't stop hoping nevertheless. Every morning, new hope is born. Hope that medication will suddenly alleviate our suffering. Hope that today, our symptoms will not hinder our plans." Share on X

hope spelt out in wooden scrabble tiles — Every morning, new hope is born

Every morning, new hope is born. Hope that today will be the day when the medicine prescribed will suddenly work wonders and alleviate suffering. A hope that although the symptoms are a constant comrade, that their presence will not hinder our plans.

Sometimes it may seem that hope is a wasted endeavour; wishful thinking that may have little chance of becoming a reality. Hope however is much more powerful that we often realise. It allows us to see a light when surrounded by darkness; the light informing us of better days ahead. Most importantly, hope is the thread that allows us to hold on and survive the worst of days.

"Hope allows us to see the light despite being surrounded by darkness; it informs us that better days are ahead, allowing us to be able to survive the worst of days." Share on X

Surviving

Surviving: Adjective. Continuing to exist; remaining intact

When first being diagnosed with a chronic illness and confronted with symptoms, it is tempting to push through and continue as if they don’t exist.

"Pushing through the symptoms of chronic illness can often do more harm than good. Sometimes we need to allow ourselves a 'day of survival.'" Share on X

Often, however, to do so does more harm than good and only serves to prolong the flare. What we need is to allow ourselves a ‘day of survival.’ To let ourselves succumb to the debilitating and unpleasant symptoms and to allow ourselves a day of rest for self-care and recuperation.

a hot cup of tea and a pen resting on top of a journal resting atop a duvet — On the worst days often the kindest we can do for ourselves is to allow us a day of survival for much needed rest and recuperation

A day of recuperation will not be the same for everyone and depends on the preferences of the individual and what the symptoms will allow us to do. But it may include a Netflix binge-watching session, or gaining comfort from a favourite book. Or even the luxury of a warm bath or shower has the power for a moment of indulgence.

It can be a difficult transition to make, especially if we are used to living a busy and hectic life. But when living with a chronic illness, there are days when we are surviving instead of living. Days when we are moving forward at a snail’s pace. But we also learn that this OK,. Allowing ourselves to slow down we are best able to appreciate and be grateful for the positive things in our life, for those that chronic illness cannot touch.

Befriending

Befriending: Verb. Act as or become a friend to (someone), especially when they are in need of help or support

To find beauty and love life again despite the darkness and ugliness that chronic illness unveils it can be useful to befriend our condition. It’s never going to become your best friend, and you will find yourself in many arguments with it, but is going to be something that we will have constant interactions with every day for the rest of our lives. To live a more successful and gratifying life despite chronic illness, we need to better understand it better.

hands making a love heart sign in front of a sunset — We need to learn to befriend our conditions and ourselves for a life living in harmony despite a chronic illness

As such, it’s essential to build an amicable relationship with our illness and our body. To set boundaries, so that we do not make foolish mistakes and trigger or make worse the symptoms that accompany our new permanent ‘friend.’

"Befriending chronic illness allows us to be able to set boundaries and not make mistakes which could trigger our make worse the symptoms that accompany our new 'friend.'" Share on X

In order to live well and in harmony with a chronic illness, therefore, we need to learn our limits, and to know what we can and cannot handle before symptoms makes their presence known.

abstract picture of love spelt out in block letters

And to know and understand what a ‘bad day’ and a ‘good day looks and feels like for us. If we are in the midst of a bad day for example, and we are aware of that, we can, therefore, take steps to better look after ourselves and prevent it from getting even worse.

By learning to befriend and make peace with this new companion in life, also makes it easier to understand and accept the limitations they bring. By understanding and knowing what is happening and why I’m better equipped in handling the emotional fallout.

It is essential for our well-being that we listen to our bodies and that to what it is trying to tell us and act accordingly. Becoming friends with illness is not a cure, however, but doing so will make life with it much more manageable. And allowing us to spend less energy so we can use it on more enjoyable pursuits.

Also, we also need to learn to befriend ourselves in the wake of a diagnosis. To allow us to get to know the new person that the diagnosis forces us to become, and the one who is different to whom we were before. We are of course the same person we were before, but the changes and challenges chronic illness presents we feel different. Befriending the new us allows us to treat ourselves with compassion and love.

"In the wake of a diagnosis, we also need to befriend this new us that chronic illness forces us to become, and different to whom we were before." Share on X

Awakening

Awakening: Noun. An act or moment of becoming suddenly aware of something

After first being diagnosed with a chronic illness, we have a new awakening to the knowledge that life will never be the same. To awaken an understanding of this new diagnosis and how we can feel as well as possible in this ‘new’ body.

"A sudden diagnosis awakens the knowledge that life will never be the same. And by doing so, we need to understand this diagnosis and how to feel well in this 'new' body." Share on X

i am grateful ceramic plaque in the shape of a love heart — Allowing ourselves to feel gratitude awakens positivity

Living with a chronic illness is undoubtedly difficult. There are often many more downs than up. Despite this, however, life with a chronic illness awakens the capability to practice gratitude.

The bad days, which are plenty when living with a chronic illness makes us appreciate those rare days even more. Practicing gratitude and becoming consciously aware of everything we are thankful. Gratitude reintroduces light into our life where chronic illness had previously trapped us in the dark.

"Living with the many limitations that accompany chronic illness, however, awakens a new appreciation and gratitude for the rare good days that we do get to experience." Share on X

And practicing gratitude helps to change a negative mindset into a positive one, allowing us to see and appreciate the beauty in life. Becoming more positive has an apparent beneficial effect on our mental health, and allowing for developing more appropriate coping strategies.

These are just some ways to find beauty and joy in life with chronic illness. How do you see beauty beyond a life with chronic illness? Feel free to share your ideas in the comments.