spoonie Archives – Page 6 of 28

In Chronic Illness

From Shame to Pride: Finding Pride in Disability

August 15, 2020 3 Comments

I am not sure if I’d consider myself disabled. To look at me, you would not immediately bear witness to the complications and challenges that arise from living with a neurological disorder such as FND. So, if I don’t look disabled, does that mean I’m not? At times I felt the condition did not disable me significantly and could get on with daily life with relative ease. Despite this, however, I am interested in events that raise awareness. Still, I was surprised about the existence of Disability Pride Month.

"To look at me, you would not immediately bear witness to the complications and challenges that arise from living with a neurological disorder such as FND. So, if I don't look disabled, does that mean I'm not?" Share on X

Disability Pride aims to promote disability as a natural part of human diversity, and beautiful one at that. Photo by **Ann H** from **Pexels**.

A lack of visibility surrounding disability and issues related to it within society still exists despite efforts to change this. And perhaps a significant reason for my ignorance of the existence of Disability Pride. Disability advocates use the month and its celebrations, such as parades, for example, to raise awareness of the social inequalities that disabled people continuously face. To change how people think about and define disability. And to attempt to end the stigma that still surrounds it. From my understanding from my research and what I have read online such celebrations aim to promote disability as a natural part of human diversity. It is to turn shame into pride by redefining what it means to live with a disability.

Am I Disabled Though?

Despite living with severe and debilitating symptoms, symptoms that impact and reduce my quality of life, I failed to identify as a disabled person. And despite the continued experience of chronic pain, spasticity, visual disturbances, and severe weakness in the legs, I still didn’t see myself as a person with a disability.

"Despite living with severe and debilitating symptoms, symptoms that impact and reduce my quality of life, I failed to identify as a disabled person." Share on X

I felt that there was a mismatch between my conceptions of disability and what it looked like and my experiences of living with FND. I felt that I didn’t fit into society’s notions of what disability is, but still was experiencing severe and debilitating symptoms. But am I disabled? Photo by Anthony Tran on Unsplash

The stereotypical view of disability is that of someone missing a limb, or someone needing the use of a wheelchair one hundred per cent of the time. The extent of the struggles associated with a disability easily seen and identifiable. Such definitions failed to embrace my circumstance and experience of living with FND. I still had full use of all my limbs, and only occasionally needed the use of a mobility aid. There were times when FND did not disable me significantly and managed quite well independently. There was a mismatch between my conceptions of disability and my own experiences of living with FND. And as a result, I failed to recognise disability as being part of my life with the diagnosis of a long-term neurological disorder.

A Person With A Disability I Was Now Becoming

But as I worsened and the need for a mobility aid became permanent, and a wheelchair became a fixture in my life; a person with a disability became something I now was.

It was hard enough to accept and assimilate a new identity of that of someone with a long-standing neurological disorder. Talking about my condition is such a monumental struggle; at the beginning, I didn’t fully understand it myself, so how could I talk about it with others? With the diagnosis, I could no longer deny that there was nothing wrong. It suddenly became real that I was dealing with a long-term condition and would be doing so for the rest of my life. I had to wave goodbye to me that existed pre-illness, and the hopes and dreams that I once held. Accepting the new identity also meant accepting the end of normality.

The increased severity of symptoms such as the trembling in the legs forced me to confront the reality of being disabled

Disabled was an even more difficult identity to welcome. It felt that by accepting this identity, I was also embracing the idea that I was different, weaker than before. And by embracing the title, I was suddenly becoming a burden on those around me.

"It felt that by accepting this identity, I was also embracing the idea that I was different, weaker than before. And by embracing the title, I was suddenly becoming a burden on those around me." Share on X

The Narrative Surrounding Disability

The narrative surrounding disability is that it is less than desirable. For some, disability is possibly one of the worst things that can happen to a person; believing that it is a fate worse than death. A typical portrayal of disability is as an evil force robbing a person of their strength, ability and independence. Something not defined as different, but instead seen as less-than; and used as a source of pity or inspiration.

The media portrays those with disability as either weak and in need of pity and compassion or used as inspiration, being labelled as ‘superhuman’ as in the case of Paralympic athletes.

In the media, stories regarding disability and disabled people are either used to elicit sympathy and compassion or otherwise celebrating and applauding them when seemingly ‘overcoming’ their disability, designed to inspire such as in the case of Paralympic athletes. Remember the constant use of the term ‘superhuman’ when describing these athletes?

"A typical portrayal of disability is as an evil force robbing a person of their strength, ability and independence. Something not defined as different, but instead seen as less-than." Share on X

Is it surprising that those living with a chronic illness is apprehensive in succumbing to the disabled identity? And how can we learn to celebrate and be proud of such a label?

Confronted With The Reality of Being Disabled

I find myself always confronted with the disabled body I now inhabit. It is evident when trapped in bed as a result of my legs refusing to cooperate and function. My identity as someone with a disability is undeniable after collapsing on the floor after my legs have unexpectedly given way. My disability is indisputable when I am heavily reliant on a crutch to help maintain balance, and when every step is a struggle due to debilitating pain and weakness.

I am constantly being confronted with the identity of a person with a disability now symptoms associated with FND are persistent and overwhelmingly disabling. I am confronted with it on a daily basis after falls, accidents and a lack of ability to do many things I used to be able to do. Photo by **Sofia Garza** from **Pexels**.

"My disability is indisputable when I am heavily reliant on a crutch to help maintain balance, and when every step is a struggle due to debilitating pain and weakness." Share on X

When the invisible becomes visible, it is painful. It is so because of the curious and often judgemental stares from others, especially after a fall. The looks of people wondering what it is wrong, and hearing the whispers that suddenly stop when you happen to look over. Once, I happened to listen to a stranger accused me of faking after such an incident, which left me upset and humiliated.

How Can I Be Proud of The Weakest Part of Me?

Such occurrences leave me feeling broken, humiliated and weak. Even more so on the days in which I am unable to get back on my feet. My only choice of having to sit or lie where I have fallen leaves me feeling more exposed and vulnerable; my brokenness and the abnormality of my legs on display for everyone one to see. These negative feelings such episodes evoke as well as the negative stereotypes surrounding disability causes me to want to rid myself of the label. I am unable to take pride or celebrate that which makes me feel more of a burden. How can I proud of that which diminishes me? The thing that which knocks me down again and again? And how can I be proud of the weakest part of me, that which many are afraid of and especially fearful of becoming?

"How can I proud of that which diminishes me? The thing that which knocks me down again and again? And how can I be proud of the weakest part of me, that which many are afraid of and especially fearful of becoming?" Share on X

In the media, the disabled become celebrated for achieving even minor accomplishments. A disabled person getting out of the house or attending a party in the eyes of the non-disabled deserves fervent recognition. But I feel that I have achieved more worthy accomplishments than just getting out of the bed this morning or leaving the house – achievements like gaining a degree is surely more deserving of a celebratory parade.

What Disability Pride Is

Disability Pride, however, is not about liking your disability. Nor is it about pretending that difficult and painful aspects of living with one do not exist.

Disability Pride is a celebration of disability and the differences and uniqueness of those living with them. It is not living with shame for our disabled bodies or disability. Disability Pride sees the worth and value of those living with disabilities despite the challenges and limitations that it entails. Photo by **Ylanite Koppens** from **Pexels**.

Disability Pride means not living with shame for my disabled body or disability. Disability Pride is dismissing the notion that due to disability, I am less able to contribute and participate in the world, or that I take more than I give. An opinion that the UK often likes to reinforce in the articles regarding disability and the UK benefits system. Or that I have less inherent value or potential than the non-disabled person sitting next to me.

"Disability Pride means not living with shame for my disabled body or disability. Disability Pride is dismissing the notion that due to disability, I am less able to contribute, or that I take more than I give." Share on X

Disability Pride is acknowledging that perfection in regards to the human body is unrealistic; instead, it promotes the idea that it’s perfectly normal to be imperfect and have flaws. I am encouraged to love my body, wobbly legs, and wonky brain included.

"Disability Pride is acknowledging that perfection in regards to the human body is unrealistic; instead, it promotes the idea that it's perfectly normal to be imperfect and have flaws." Share on X

Becoming Disabled Because of FND

Living with FND, and becoming disabled has forced me to encounter endless challenges, obstacles and adversity. The uncertainty I face every day of never knowing what my symptoms are going to do. And not knowing where and when my legs are next going to give way on me. Or not knowing what the future entails with regards to the illness and disability. There is tremendous adversity in not being able to go out alone and becoming heavily reliant on others to leave the house. Something that makes me feel like a massive burden on those closest to me.

As the symptoms of FND worsened; becoming more severe and disabling, the label of disabled is one that I had to learn to accept. Photo by **Ann H** from **Pexels**.

Since becoming disabled, I continuously come up against sadness, loneliness, and isolation. And at times, I have had to learn to advocate for myself and my needs. Such challenges have become so frequent they are a part of my life. I hate that it dictates how I can spend my days, and what I can or cannot do. A burden that weighs heavily upon me as it makes me feel weak and worthless. One I wish I could change, but despite my best efforts, I have found I cannot.

"I hate that it dictates how I can spend my days, and what I can or cannot do. A burden that weighs heavily upon me as it makes me feel weak and worthless." Share on X

The Unexpected Gifts of Disability

Despite the challenges that disability continuously provokes, it has also given me unique gifts. Perhaps these gifts were more thrust upon me, and my circumstances forced me to hone them over time.

Life with FND and disability has given me resilience. Despite the endless hurdles and setbacks, I find myself able to get back up, dust myself off, and try again. This ability continues to surprise me as I do and achieve things I never imagined I could. Despite disability and its forced limitations, I can be proud of what I have attained.

"Despite the endless hurdles and setbacks, I find myself able to get back up and dust myself off. This ability continues to surprise me as I do and achieve things I never imagined I could." Share on X

It has taught me compassion and the importance of understanding the pain that others withstand. Perhaps without my disability, I would not have otherwise had the chance to develop my writing, something which continues to give me purpose.

Us all need to recognise the gifts that disability can present to turn the shame to pride. Because if we continue to feel shame for our disability or chronic illness, then we continue to contribute to the perception that disability is less-than. A notion that not only diminishes ourselves but others also living with disabilities. Once more, it continues to reinforce negative attitudes of disability and those living with them.

"Because if we continue to feel shame for our disability or chronic illness, then we continue to contribute to the perception that disability is less-than." Share on X

Disability Pride Changing How I See My Disabled Self

Yes, I acknowledge that because of disability, I have lost so much. I have lost the normal function of my body, my independence and my confidence as examples. But Disability Pride encourages me not to dwell on these but to recognise and celebrate that which I can still do, and the accomplishments earned despite the adversity created by FND that is a massive part of my life.

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A post shared by Rhiann Johns (@serenebutterfly)

Yes, disability is a part of who I am, and at times a challenging one, but is one that I can still be proud of and should celebrate.

"Yes, disability is a part of who I am, and at times a challenging one, but is one that I can still be proud of and should celebrate." Share on X

In Chronic Illness

Parallels Between Chronic Illness & A Pandemic

July 24, 2020 5 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 July, I have chosen to write about the parallels between chronic illness and a pandemic.

The recent events that have affected much of the world somewhat feel like a plotline from a film. What many of us are currently experiencing is slightly similar to what happens in the film ‘Contagion.’ Disclaimer, the first time I watched said movie; I silently thought ‘how far fetched! Never did I imagine that I would be living through such a pandemic, and watching it for the second time recently, it felt more like watching a documentary than a film.

The Parallels Between Chronic Illness & A Pandemic

The pandemic and subsequent lockdown have interrupted our lives; in fact, it has interrupted and affected every facet of our lives. It has pressed pause on life as we knew it, resulting in us scrambling for a new normal.

In much the same way as being diagnosed with a chronic illness, the COVID-19 Pandemic has pushed pause on all of our lives; interrupting our normal as we search for a new one. Photo by **cottonbro** from **Pexels**.

As time passes, I have begun to observe the parallels between living through a pandemic and living with a chronic illness. For example, both require you to make adjustments, as well as taking necessary precautions to keep well. Both interrupts and presses pause on life as we knew it. And both require finding a new normal; finding a new way to live when our life suddenly changes in all manner of ways.

"As time passes, I have begun to observe the parallels between living through a pandemic and living with a chronic illness. For example, both require you to make adjustments, as well as taking necessary precautions." Share on X

The Uncertainty Is Bothering Me!

The growing uncertainty surrounding the Coronavirus pandemic is starting to bother me. It is hard not knowing when it will end, or even what is or what is not safe. It is even more confusing when there is often such conflicting information from the government and the scientific experts. As well as the increasing uncertainty of what life will look like after it finally ends.

It is somewhat ironic that such uncertainty is bothering me so much. Why? Because living with a condition like FND, uncertainty is something that is a regular part of my life. Every night I go to bed, not knowing what sort of day I will experience. When living with a chronic illness, there are good days. And there are also awful days, where illness is the victor, leaving you defeated in a heap on the floor. Hell, often it is not even days, but often moments where life suddenly changes. The problem, however, is that when symptoms will abruptly emerge and disturbing our rare moment of peace is uncertain.

"It is somewhat ironic that such uncertainty is bothering me so much. Why? Because living with FND, uncertainty is something that is a significant part of my life." Share on X

Living with a chronic illness, therefore, forces you to learn to be okay with uncertainty, as otherwise fighting it makes you even more unhappy. In time, you learn to enjoy and make the most of the good moments and take the bad moments as they happen.

I have learnt to be okay with uncertainty as it pertains to living with chronic illness. So, why am I having such a problem with it during the current pandemic?

The Demanding Relentlessness of Symptoms of FND

As of late, the symptoms that I experience as a result of FND have become particularly demanding. Often, it has felt that I am being tortured and persecuted by cruel and relentless symptoms. The pain confined to my legs has been tormenting. When the pain isn’t being problematic, I have been finding myself overwhelmed with dizziness. And many days of my legs being so weak that getting out of bed has been incredibly difficult. And has made getting around the house incredibly challenging.

Sometimes the symptoms associated with chronic illness demands so much from us, and now the impact of the current global pandemic is doing the same.

As we slowly emerge from the lockdown measures imposed by the UK government, I too have emerged from my cocoon of isolation. The demandingness of such severe, relentless symptoms, however, have been unkind. As a result, emerging from my cocoon after so long, being cooped up inside has been more difficult than I had anticipated.

"As we slowly emerge from the lockdown measures imposed by the UK government, I too have emerged from my cocoon of isolation. However, emerging from my cocoon has been more difficult than I had anticipated." Share on X

Being diagnosed with a neurological disorder changes every facet of your life. It interrupts your life and the plans for the future in such a profound way that you can no longer recognise your life any longer. This pandemic has had such an effect; it has changed our lives so significantly. And for those of us living with chronic illness, it has altered our lives with them. Pauses in treatments and therapies have meant that many of us, symptoms have worsened, or the progress we had previously made is now lost.

"This pandemic has had such an effect; it has changed our lives so significantly. And for those of us living with chronic illness, it has altered our lives with them." Share on X

Nourishing Stress and Anxiety With Self-Care

Many people have reported feeling stress and anxiety as a result of all the uncertainty surrounding the current Coronavirus Pandemic. It has never been more important to revel in self-care. Nourishing our well-being is important not only for our bodies but is also essential for our mind and soul.

Stress and anxiety are very much a part of living with a long-term health condition. As the pandemic and lockdown continues, stress and anxiety have been reported by many as we all grapple with the ‘new normal’.

The stress of this current global predicament is very much like the stress of living with a chronic illness. The uncertainty and the many unknowns of our future lives with a chronic condition also cause stress and anxiety. Self-care becomes vital for our quality of life as well as for increased functionality.

"The uncertainty and the many unknowns of our future lives with a chronic condition also cause stress and anxiety. Self-care becomes vital for our quality of life as well as for increased functionality. " Share on X

It has never been more critical, therefore, to look after ourselves; body, mind and soul.

Telecommunicating To Fight Isolation And Loneliness

Another parallel between chronic illness, and a pandemic is the isolation and loneliness that they both create.

Often for those living with such conditions missing out become a natural part of life. During the current pandemic and lockdown, it has become something that we all are experiencing. Unable to see friends and family is now something that we are all forced to live with, whether living with illness or not.

One parallel of life with chronic illness and the current pandemic is the isolation and loneliness that is a consequence of both.

As a result, loneliness and isolation have become another consequence of the pandemic and subsequent lockdown. But something, those living with chronic illness, is all too familiar with, becoming another part of our daily life. Throughout the current pandemic communicating via Zoom or Skype has been a lifeline for many to keep in touch with our friends and family.

"Throughout the current pandemic communicating via Zoom or Skype has been a lifeline for many to keep in touch with our friends and family." Share on X

The symptoms I experience as a result of FND often make it extremely challenging for me to go out, and something I am unable to do alone. Consequently, attending support groups for those living with this disorder is extremely difficult for me. However, during the lockdown, I have been able to join in with such groups via Zoom. I have immensely enjoyed these chats and have become a lifeline in denouncing the loneliness and isolation I often experience.

Tolerating The Symptoms of FND As Well As Tolerating The Impact of Lockdown

Unfortunately, for many of us, there are symptoms that we experience that is seemingly immune to all potential remedies. No matter how many medications we try, or treatments we undergo the symptoms persist, seemingly irremediable, incurable.

Life with a chronic illness, and life during a pandemic are both situations that we cannot control. Our only choice, therefore, is to tolerate them and get through it as best we can. Photo by **Nandhu Kumar** from **Pexels**.

There is nothing that we can do, therefore, other than to tolerate such persistent symptoms. It is a hard lesson that teaches us that we are not always in control of our lives; instead, other forces have such power, like that of a long-term health condition.

"For many of us, there are symptoms that we experience that is seemingly immune to all potential remedies. No matter how many medications we try, or treatments we undergo the symptoms persist, seemingly irremediable, incurable." Share on X

Neither do we have such control over anything related to the current global pandemic. There is nothing to do besides following the advice shared by our governments and the scientific and medical experts. Again, this has been a lesson that we do not always have full control over our lives. A situation that we cannot control, but instead only tolerate.

What other parallels between chronic illness and a pandemic can you think of? I would love to know your thoughts!

In Chronic Illness

Chronic Illness: A Burden & Being A Burden

July 14, 2020 2 Comments

Burden:
that which is carried; load
that which is borne with difficulty; obligation; onus

Living with a chronic illness is a burden. One that is unwelcome and not wanted.

The burdens that accompany chronic illness are exponential, far-reaching, and forever increasing.

But not only do we have to endure such burdens, but we also start to feel like a burden. Notably, a. burden to those closest to us; those forced to face the struggles and annoyances that accompany chronic illness with us.

"Not only do we have to endure a burden such as chronic illness, but it also makes us feel like a burden." Share on X

The weight of chronic illness is a heavy burden to carry. Photo by **Sathyaprabha Rakkimuthu** from **Pexels**.

A massive chasm exists between independence and dependence. The tsunami-like temperament of chronic illness firmly pushes you onto the side of dependency.

"A massive chasm exists between independence and dependence. The tsunami-like temperament of chronic illness firmly pushes you onto the side of dependency." Share on X

From Being Burdened To Being a Burden

Living with chronic illness forces you to become dependent on others for everything. From company to entertainment as well as support in everything from attending hospital appointments, preparing food, and even getting around the house. As the list of what you can no longer do without help becomes longer, it becomes difficult not to feel like a burden.

"Living with chronic illness forces you to become dependent on others for everything. As the list of what you can no longer do without help becomes longer, it becomes difficult not to feel like a burden." Share on X

The severity of the symptoms that I experience as a result of FND has increased my dependency on others. For instance, the severity of the weakness in my legs, as well as the constant dizziness, means that I am unable to go out alone. And as such, dependent on others to be able to go out into the world.

Monochrome picture of a woman with a shadow of a hand in front — There is nothing like relying on others for a lot of your care, and life to make you feel like a burden affecting your self-esteem and sense of purpose among other things. Photo by **Joanne Adela Low** from **Pexels**

I am also unable to stand for very long, leaving me unable to use public transport. I, therefore, have become reliant in particular on my father to drive me everywhere I need to go. The culmination of all the symptoms I experience also makes it challenging to cook or do other household chores without help. Because of all this, I too, have often felt like a burden on others. I often feel embarrassed and ashamed that at age 34, I am still in need of so much assistance.

One Burden of Living With Illness Is That Sometimes People Walk Out

Also, my temperamental brain became unable to tolerate certain places, places with high ceilings, for example. As such, going to the cinema, or going anywhere with a high ceiling is hugely uncomfortable and intolerable for me. Picking venues and situations that I can adjust to, or even tolerate, is a heavy burden.

And one such burden that people have been able to understand or accept, viewing it as a considerable inconvenience. And one that has resulted in many leaving my life, effectively ghosting or dumping me. Over time, it has made me more closed off and discouraged about finding love or even meeting someone new.

The fear of burdening another person has prevented me from letting anyone close to my heart. Or even into my life. This, and the fear of being viewed a burden.

Perhaps it is because of this; I am still single. If someone were to date me, and I often question why anyone would, it often feels that a man wouldn’t just be dating me but also the neurological disorder that encompasses my entire existence. The fear of burdening another person has prevented me from letting anyone close to my heart. Or even into my life. This, and the fear of being viewed as a burden by any potential suitors.

"Perhaps it is because of this; I am still single. If someone were to date me, and I often question why anyone would, it often feels that a man wouldn't just be dating me but also the neurological disorder I live with." Share on X

“Is It OK to Dump Him Because of His Medical Condition?”

In a recent edition of The Ethicist, a weekly advice column by writer Kwame Anthony Appiah, one reader sought advice about their short-term relationship. The reader explained that the person they had been dating has recently disclosed his diagnosis of Crohn’s Disease; an inflammatory bowel disease that can cause life-threatening complications if not cared for correctly. Armed with the knowledge of the illness and its potential complications, the reader goes onto ask if they would be in the wrong to end the relationship. In the letter, they cite that they wish to “shield [themselves] from the pain” if the worse were to happen, or from a future break-up if the partner’s illness became too much to handle.

a man and woman hands almost touching both with a red cross on the back of them — It is abhorrent that an article would suggest that it is OK to end a relationship because one of them has a medical condition and may. need care in the future. It plays into society’s notion that those with chronic illnesses and disabilities are a burden. Image by Free-Photos from Pixabay.

Appiah replied, “committing to this person may be committing to a life as a caregiver.” And he continued by stating “You don’t owe it to anyone to accept that burden.”

In one advice column – and in the New York Times no less, a prestigious publication seemed to endorse the fears and insecurities of many chronically ill and disabled individuals. That worry that we are a burden and that others see us as such too.

"In one advice column – and in the New York Times no less, a prestigious publication seemed to endorse the fears and insecurities of many chronically ill and disabled individuals." Share on X

And with these words, the author, Appiah and by association, The New York Times is promoting ableism against both this specific person and other chronically ill and disabled people potentially harmed by such advice. Furthermore, it is ableist to assume that everyone living with a chronic illness, like IBD or disability, is going to need a caregiver in a romantic partner. Many can manage their condition and their lives around it, without any assistance just fine.

We Are Not Burdens

Living with a chronic illness is a rollercoaster. It includes long periods of being able to manage, followed by hardships, setbacks, and flares. And back round to managing.

In truth, although there are many aspects of our lives that we often need help with, we tightly hold onto any slither of independence we can. For example, I stubbornly refuse help with chores such as changing my bed, or ironing my clothes, often to my detriment. Our autonomy is more precious to us as our independence becomes something so readily taken from us.

"In truth, we tightly hold onto any slither of independence we can. Our autonomy is more precious to us as our independence becomes something so readily taken from us." Share on X

The guilt and shame that exudes from chronic illness often whisper lies that I am a burden. But the truth is, that those who love me do not see me as a burden. Those who love you do not recognise you as a burden. Those who love us simply want to support us in any way they can. They understand the illness, or disability as part of who we are, but they also appreciate that we are so much more.

Chronic Illness is the burden and not you

It is not we that are the burden; it is the illness, condition or disability that has happened to us. For it is chronic illness that prohibits us from being self-sufficient and allowing us complete independence. It is the diagnosis we live with that demands a great deal of help and assistance from others.

"It is not we that are the burden; it is the illness, condition or disability that has happened to us. For it is chronic illness that prohibits us from being self-sufficient and allowing us complete independence." Share on X

You Are Not A Burden

I am sure, like me with the words of the New York Times article ringing in your minds, doubt, guilt and wonder creep in, questioning if you are indeed a burden. Let me assure you, that despite the many moments of feeling less than, and the many more of not being able to keep up with the demands of life, you are not a burden.

"Let me assure you, that despite the many moments of feeling less than, and the many more of not being able to keep up with the demands of life, you are not a burden." Share on X

You are so much more than your diagnosis, and far more independent and self-sufficient than you might believe. Don’t accept anything less from anybody than love, understanding and acceptance.

Let us dream of a fairytale romance, with the prince (or princess) of our fantasies, a realist, knowing we are only human and not seeing us as a burden while helping us with the demands of chronic illness that demands help and assistance.

Chronic Illness: A Burden and Being A Burden

In Chronic Illness

Flares: From The Invisible To The Visible

June 26, 2020 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 June, I have used the prompts to discuss how flares can go from the invisible into the visible.

After a long, arduous night battling intense, crippling pain, I find myself standing in front of a mirror. Doing so, I begin searching; searching for signs left behind by the symptoms that have tortured every facet of my being for so long. Like the most observant crime scene investigator, I meticulously search for evidence discarded by the offender that is chronic illness.

"I begin searching; searching for signs left behind by the symptoms that have tortured every facet of my being for so long. Like the most observant CSI, I meticulously search for evidence left behind by chronic illness." Share on X

Sure, I observe the extremely ashen complexion, and the severely dark circles under the eyes staring back at me. Both easily attributed to yet another sleepless night and not the torture that my body continues to wreak upon me.

The Invisibility of A Flare

But alas, there are none. The effects of the sudden ferocious flare that arose from nowhere have left no visible evidence of the devastation it has left behind. Surprisingly, illness, its accompanying symptoms and all its baggage often remain invisible despite the damage it inflicts upon its victim. And for the person living with the scourge of a flare, it is bewildering that others can think we look well when continually sieged by debilitating pain.

"The effects of the sudden ferocious flare that arose from nowhere have left no visible evidence of the devastation it has left behind. Surprisingly, illness often remains invisible despite the damage it inflicts upon its victim." Share on X

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A post shared by Rhiann Johns (@serenebutterfly)

Flares come and go. And each time that one passes came the hope that it would be the last one. And the desire that never again would I have to utter the words, “This is the worst that I have ever felt in my entire life.” But flares always come back. They would always return, and the hope that had recurred after the flare diminished, disappeared along with it. Yet again, forced to confront the ever-increasing presence of illness and disability in my day-to-day existence. Along with this, is the need to accept the increasing lack of functioning as a part of my life.

"They would always return, and the hope that had recurred after the flare diminished, disappeared along with it. Yet again, forced to confront the ever-increasing presence of disability in my day-to-day existence." Share on X

The Traumatising Effect of a Flare

Flares, with its spike in symptoms, and the excruciating effects of the increased severity of them is a kind of trauma in itself. The symptoms that accompany chronic illness are invariably unpredictable and intense, but even more so during a flare. And as such, living through one is both challenging and overwhelming.

"The symptoms that accompany chronic illness are invariably unpredictable and intense, but even more so during a flare. And as such, living through one is both challenging and overwhelming." Share on X

Day and after day living through the hell of debilitating pain, and unable to do anything but lie and endure such torture, you begin to feel helpless. You also start to believe that the flare will never end, and instead trapped in this seeming nightmare always. The unpredictability, intensity, and relentless nature of such a setback can be scary, discouraging, and frustrating. Its very presence is a stark reminder of the power that chronic illness yields in our lives. And reminding us that we do not always have control over our bodies.

curled up in a foetal position because of pain — Flares, with its spike in symptoms, and the excruciating effects of the increased severity of them is a kind of trauma in itself.

Even after the flare dissipates, there is a trauma of having to live with new limitations, a result of a further loss of functioning; a byproduct of the prior exacerbation. A loss of identity. A loss of self-confidence. The scars from previous flares, that had removed me from life, and which I had lost so much continue to haunt me. As well as the knowledge that it will inevitably return. And haunted by the gains returned to me after a prolonged flare, only to have them snatched away again.

"The scars from previous flares, that had removed me from life, and which I had lost so much continue to haunt me. As well as the knowledge that it will inevitably return." Share on X

Becoming Disabled: My Body Responding to Frequent Flares

Because of the cycle of flares coming and going, my level of functioning and mobility, in particular, has changed. Steadily, worsening over time. Once, only relating to the label of being chronically ill, the deterioration in functioning added a new label to an ever-changing identity – disabled. It was now that as a result of the cycle of flares, the invisible slowly became more visible.

"Because of the cycle of flares coming and going, I have steadily, worsened over time. Once, only relating to the label of chronically ill, the deterioration in functioning added a new label to an ever-changing identity – disabled." Share on X

Flares: From The Invisible To The Visible

Where once I was unable to rely on myself, I was now unable to rely on my body because of the devastatingly debilitating effects of the symptoms that accompany FND. My new life came with a variety of paraphernalia associated with disability.

"Where once I was unable to rely on myself, I was now unable to rely on my body. My new life came with a variety of paraphernalia associated with disability." Share on X

Over time, I needed a variety of assistive walking devices. Different mobility aids for different mobility days; some days, a single cane will suffice in helping me get around. Other days, I find myself needing extra support, which a crutch fails to provide, so a rollator came into my life. And the terrible days, where my legs are being incredibly uncooperative, a wheelchair is needed. Going out, I began to need a disability badge in the case that my legs unexpectedly give way.

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While before my symptoms were invisible when I become more visibly disabled, however, I found it was me that became invisible.

Honouring My New and Ever-Growing Limitations

As the identity of ‘disabled’ made me feel invisible and even more isolated than before, I began to resent it. I ignored what my body needed and did everything to blend in, to once again feel visible in the world. The assistive devices that now played a prominent role in my life were left at home, discarded and redundant just as they had made me feel redundant, unable to live life like I once had.

"As the identity of 'disabled' made me feel invisible and even more isolated than before, I began to resent it. I ignored what my body needed and did everything to blend in, to once again feel visible in the world." Share on X

It, however, only led to more falls as a result of a lack of support and balance such aids provided. All the extra walking needed to get around only resulted in more pain. And after returning home, overwhelming fatigue emerged, left unable to do anything but tolerate it. I had to learn to accept the inevitability that flares go from the invisible to the visible. And as such, had to acknowledge my need for such assistive devices.

Being in a wheelchair usually leaves me feeling more alone and isolated than ever before, which made it harder to accept that I needed to use such assistive devices. Photo by **Marcus Aurelius** from **Pexels**.

Honouring the disabled label was a gradual process. Some days, I felt disabled, and days when I didn’t. The tag was an ageing-in sort of thing that took many years of being sick and living with FND. Disability is a unique lesson in acceptance; by honouring the limitations of my body and embracing the mobility aids that accompany it, I can be happier and be more productive than without them.

"Disability is a unique lesson in acceptance; by honouring the limitations of my body and embracing the mobility aids that accompany it, I can be happier and be more productive than without them." Share on X

Hoping That The Label Will Become Only A Small Part of My Life

The severe debilitating effects of a flare, and the resulting disability it causes often feel that it plays a significant and prominent role in my life. At times it feels that the diagnosis defines me, and the rest of my life pales into insignificance. Even more so, during a debilitating flare, or on the awful days, which there are many.

I hope for the day when illness and disability becomes only a small part of my life, as often and especially during times of a flare it can feel like the most significant part of life!

So, I began hoping and living for the moments in between. The good times in between flares, the good parts of the day when I’m not in pain. Or those times where the other symptoms are quiet in the background. And the times when I don’t have to always worry about my health; or concerned when the symptoms will next suddenly appear.

"I began hoping and living for the moments in between. The good times in between flares, the good parts of the day when I'm not in pain, or where the other symptoms are quiet in the background." Share on X

I am hoping that over time, despite the disability that has begun to impact every facet of my life significantly, that it will become just another part of my life. I hope that it will become a small part of my life; even on the bad days.

In Chronic Illness

Living Inauthentically With Chronic Illness

June 9, 2020 1 Comment

When disabled by severe and debilitating symptoms, we find solace in any way we are able. Not that anyone would know as I continue living inauthentically with chronic illness. While finding myself incapacitated by such relentlessly debilitating symptoms, I have found comfort and solace in the written word. And as a result, have been on somewhat of a book-binge.

One of my favourite reads was a beautiful and life-affirming novel ‘The Authenticity Project.’

‘The Authenticity Project’ by Clare Pooley is a charming novel about six strangers with one universal thing in common. The truth is that each of them is being inauthentic regarding their life; their lives aren’t always what they make them out to be.

‘The Authenticity Project’ by Clare Pooley, a charming, uplifting and life-affirming novel. A perfect Summer read!

It starts with an eccentric artist and septuagenarian, Julian, desperate to confess to the deep loneliness he feels. And so he begins The Authenticity Project. A small green notebook which contains the authentic truth about his life. He then leaves the journal on a table in Monica’s cafe in a bid to encourage others to share their own. And as these five other strangers come into contact with the book and share the truth about their lives, it leads to a life-changing world of friendship and genuine connections.

As I finished the book, continuing to think about the story long after I turned the last page, I started to think about my own life. In doing so, I began to question whether I am authentic and truthful regarding my own life. Or, as like the characters in the book, my life is not always as I make it out to be. Moreover, I questioned whether I was authentic to my reality of living with a long-term neurological disorder.

What does it mean to be authentic?

The definition of authenticity is the quality of being real or true.

Authenticity means coming from a real place within. It is being wholly ourselves, and not an imitation of what we think we should be or told what we should be.

Living Inauthentically With Chronic Illness

The truth is, I am not sure that I am very truthful in regards to my life, specifically my life with FND. It is not an aspect of my everyday life that I am comfortable talking about, and so I choose not to. Even when asked questions regarding my use of a crutch, I answer quickly and swiftly deflect the inquest that inevitably follows. The dreaded question, “How are you?” swiftly brushed off with a simple, “Fine.” Even, when it is far from the actual truth; a reply also used on the worst of days.

"The dreaded question, "How are you?" swiftly brushed off with a simple, "Fine." Even, when it is far from the actual truth; a reply also used on the worst of days." Share on X

In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others. It becomes more comfortable, therefore, to shut the words about those parts we hate away into the dark recesses of our minds. Shut them away in an attempt to forget the existence of them, or to hide them from the rest of the world. And so we begin living inauthentically with chronic illness.

"In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others." Share on X

It can even be hard to be authentic in the online world

Sure, it is easier to be more open on social media, which allows you a small degree of anonymity. A medium that enables you to fade into the crowd, to blend in and disguising oneself as being ‘normal’. I find that I am much more eloquent when writing rather than speaking aloud.

Is it actually easier to be authentic online, or does it make it easier to be the person we want to be rather than the person we are? Photo by **Porapak Apichodilok** from **Pexels**.

Despite this, however, I am not much more open online, particularly on social media. Like most people, my timeline is mostly a highlight reel of the rare, good days, uplifting moments and events to cherish, especially on Facebook, and the main reason why my timeline is incredibly sporadic in its updates.

"Like most people, my timeline is mostly a highlight reel of the rare, good days, uplifting moments and events to cherish, especially on Facebook, and the main reason why my timeline is incredibly sporadic in its updates." Share on X

Inauthentic by editing out the bad days

But what I don’t reveal in the online world I participate in, is the many, many bad days that are caused by the severe, continuous symptoms of FND. Those bad days, which heavily outweigh the good, are erased. It fails to memorialise those days in which the excruciating, debilitating pain overwhelms everything else; the days in which the pain is the victor, and I’m its victim.

"My online world fails to memorialise those days in which the excruciating, debilitating pain overwhelms everything else; the days in which the pain is the victor, and I'm its victim." Share on X

Nor does it mention the days in which my stubborn, uncooperative legs refuse to work, and unable to get out of bed. Neither are the days in which my legs give way, causing a fall down the stairs, or a fall in public commemorated online for the whole world to observe. And neither exists, photographs of the many injuries sustained during such falls and accidents. I hide my condition, and its effect away, and choose instead to hide behind a mask.

Being inauthentic regarding life with chronic illness, we wear a mask and conceal the effects that it has on our physical and mental health

"Nor does it mention the days in which my uncooperative legs refuse to work. Neither are the days in which my legs give way, causing a fall down the stairs, or a fall in public commemorated online for the whole world to observe." Share on X

Perhaps, it is easier to be inauthentic online where we can choose who we want to be instead of the person we are.

"Perhaps, it is easier to be inauthentic online where we can choose who we want to be instead of the person we are." Share on X

The Difficulty of Authenticity for the Chronically Ill

It is easy sharing the happy, carefree moments of our lives. The good parts of our daily lives, comprised of our hobbies, nights out with friends, and holidays, for example. But why is it different when sharing the details of the most painful aspects of our lives, such as living with chronic illness?

Why is there such a stigma around vulnerability and revealing our raw, authentic selves? And why for the chronically ill community is there such awkwardness surrounding our lives with chronic illness?

"For me, I like to pretend that FND does not have me; that it does not define me. But who, am I kidding? FND has me; has me tightly in its grasp. How can it not, when days and nights are dominated by such relentless symptoms." Share on X

For me, I like to pretend that FND does not have me; that it does not define me. But who, am I kidding? FND has me; has me tightly in its grasp. How can it not, when days and nights are dominated by such relentless, disabling symptoms. And how can it not when every facet of my life is dependent on that day’s symptoms. Of course, FND does not wholly define me, but it does to a degree. As much as I would like to disagree, it is an integral part of my story.

Authentiity is hard to find amid our struggles with chronic illness

We are often living inauthentically regarding our lives with a chronic illness for fear of being a burden or a fear of being pitied. And also we don’t want to be all about our diagnosis. We want to be seen and acknowledged for the person we are, instead of the person we were. There is a fear that by documenting the bad days, and the accidents that befall us, we will be accused of doing so to gain sympathy or attention.

"We are often living inauthentically regarding our lives with a chronic illness for fear of being a burden or a fear of being pitied. And also we don't want to be all about our diagnosis." Share on X

I cannot tell you the hurt and sorrow that comes when your illness becomes the first topic of conversation. It feels that others are suggesting that it is the most exciting thing about you, which is never the case. It can feel that others are reducing to us to a diagnosis; a label.

The Advantages of Being Authentically Ill

The biggest lesson that one can take from ‘The Authenticity Project’ is the gifts that being authentic can bring. By being so, it can foster real connections, just like the characters in the book. And for those living with chronic illness, being vulnerable and authentic regarding the struggles we face, can help reduce the feelings of loneliness and isolation that it often causes. By sharing our truths, we can find others going through the same experiences. And it can remind us that we are not alone and everything we feel as a result is valid and understood.

Being authentic, open and honest about the struggles of living with chronic illness, we are able to foster connections with others, and help reduce feelings of loneliness and isolation that are so often accompanying symptoms.

"For those living with chronic illness, being vulnerable and authentic regarding the struggles we face, can help reduce the feelings of loneliness and isolation that it often causes." Share on X

So perhaps, I need to stop editing my social media and my conversations regarding my life with FND. And to start sharing the bad days and struggles as well as those rare good moments that occur.

I need to incorporate my own ‘Authenticity Project’ to foster real, and authentic connections in my life.

By doing so, perhaps I won’t feel as alone.