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Dating & Chronic Illness: Will Anyone Love Me?

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

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

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

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

Dating and Chronic Illness: Does it Make Me Undesirable?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rejection: A Common Thread In My Relationships

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

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

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

FOMO: The Feeling of Missing Out

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

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

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

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

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

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

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

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

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

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

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Sometimes, I Don't Want To Talk About It
In Chronic Illness

Sometimes, I Don’t Want To Talk About It

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

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

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

"I do not find it easy to articulate the full extent of constant, debilitating pain. Or the gravity of the other symptoms that are constantly with me. It is hard to put in words how much control such symptoms have on every day." Share on X
I may write and talk about my health and disability a lot online, but still, there are times when I don’t want to talk about it. Photo by Kat Jayne from Pexels

The Struggle of Opening Up About My Health Condition & Disability

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

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

Wanting To Hide My Disability Due to Embarrassment and Shame

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

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

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

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

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

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

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

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

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

"Sometimes I don't want to talk about my chronic illness or disability because I worry that by doing so, my whole self-identity is that of the 'sick' girl, and that is how others will see me." Share on X
I sometimes don’t want to talk about my disability because I’m worried that people will it, before they see me as a person.

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

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

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

Sometimes I Don’t Want To Talk About My Disability

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

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

"There are times I want to hide my disability because I have and still can feel different. I want to feel normal. And I want to put those times and feelings to the back of my mind and focus on things that make me forget." Share on X
There are times when I want to hide my condition and disability because I want to feel normal and pretend I’m like everyone else, at least for a little while. Photo by Daria Shevtsova from Pexels

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

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

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

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

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

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

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

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

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

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

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

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From Shame to Pride: Finding Pride In Disability
In Chronic Illness

From Shame to Pride: Finding Pride in Disability

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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.

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
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A Not So Very Normal Life
In Chronic Illness

A Not So Very Normal Life

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In my recent to-be-read pile, two books jumped out at me. One called ‘Normal People‘ by Sally Rooney. The other was ‘Very Nearly Normal‘ by Hannah Sunderland.

As I noticed them, I began to ruminate over the word ‘normal.’

Normal, defined as “conforming to a standard, usual, typical, or expected.”

It is a word that the majority of us aspire to be; to fit in with whichever peer group we wish to be a part of, and accepted. However, for many, it is not a word that they feel applies to them, or which they can relate. 

As a consequence of living with a neurological disorder from a very young age, with strange and unusual symptoms, normal is not something I ever felt I am or a word that resonated with me.

In truth, ‘normal; isn’t a word that I have ever resonated with, particularly after the commencement of the symptoms that would go onto have a significant impact on my life. But even before then, I often felt that I didn’t quite fit in, or that I wasn’t normal. I never seemed to like the same things other kids my age were into and always seemed to be much more introverted than others my age.

"In truth, 'normal; isn't a word that I have ever resonated with, particularly after the commencement of the symptoms that would go onto have a significant impact on my life." Share on X

Perhaps, it was just part of ordinary childhood; I don’t know. But what I do know that these feelings never went away, and becoming a constant theme in my life.

Beginning To Live A Not So Very Normal Life

Even what I thought was normal, such as the trembling and general feeling of weakness in the legs. Having experienced such sensations from such a young age, I naively assumed that everyone lived with such sensations.

But when diagnosed with a chronic illness, it is much akin to finding oneself landed on an alien planet. A strange, new world that we are unable to escape from, unable to return to the normality we knew.  And as we are unable to leave, we begin to build a home and a life on this alien planet. Slowly it becomes our new normal, and a home that no longer feels alien.

"When diagnosed with a chronic illness, it is much akin to finding oneself landed on an alien planet. A strange, new world that we are unable to escape from, unable to return to the normality we knew."   Share on X
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And when living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Life with chronic illness becomes the new normal.  Often, it becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives.  Nor can we remember what it was not to endure such unyielding and debilitating symptoms.  

"When living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Slowly becoming the new normal." Share on X "It becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives.  Nor can we remember what it was not to endure such unyielding and debilitating symptoms." Share on X

Always Foreseeing The Unnormality Of This Chronic Life

I have always foreseen, and currently envisioning the un-normality of a life living with a chronic illness. It is evident by observing everybody else around me, living life without the difficulties I continually face.  Their existence not blighted by cruel, relentless, and debilitating symptoms, unlike that of mine.  

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Staring out the window and watching people busily walking and carrying out errands often makes me wonder how they can do so, without feeling the ill effects that I do such as pain, dizziness, or fatigue? For me, it seems so abnormal but in fact the norm for so many.

Watching people, taking long walks, I wonder how they can do so without being met by excruciating sharp pain radiating down their spine and legs. Or being out in vast, open spaces without the feeling of intense dizziness suddenly overwhelming them.  Or being out alone without the worry of legs suddenly giving out from under you, leaving them in a heap on the fall, unable to get up, and left humiliated by a body that is failing them.

"Watching people, taking long walks, I wonder how they can do so without being met by excruciating sharp pain radiating down their spine and legs. Or being out without the feeling of intense dizziness suddenly overwhelming them." Share on X

I find myself plagued by such thoughts as I am unable to remember I time when I didn’t experience such symptoms.  These symptoms have become such a part of my everyday life, that it has become my personal normal. Now, if such symptoms suddenly disappeared, it would feel abnormal.  

Living with a chronic illness, our normal is strange and unnatural to everybody else. And the normal for everyone else, for us, becomes odd and peculiar. On those rare good days, with no or very few symptoms, they can feel strange and bizarre, almost like trying on a wrong size pair of shoes.

"Living with a chronic illness, our normal is strange and unnatural to everybody else. And the normal for everyone else, for us, becomes odd and peculiar." Share on X

An Upbringing of Symptoms and Unusuality

Do you remember the days of childhood? Those blissful happy, carefree days where it felt that you had no worries, or obstacles blocking your way forward.  When experiencing strange and debilitating symptoms from a young age, they had a part in our upbringing alongside our parents and other close family members. 

The promise of care-free childhood usually promises a time free of limitations, a time of freedom, and fitting-in. But when living with symptoms, even when you are unaware of its origins, you become only too aware of the limitations of your body. And the fragility of life.  The promises of childhood snatched away, becoming no stranger to what makes you different.  

It often feels that the symptoms I experience as a result of FND was much a part of my upbringing as anything else. Perhaps the problems I experience with my legs was a big reason for my love of reading as I was not able to enjoy more physically challenging hobbies.

No longer do you fit-in, fixated on the parts of the body that is different from the person standing next to you.  Or all too conscious of what is happening inside of you, that which only you can apperceive.  Once you felt normal, but no longer is it the truth.  

"No longer do you fit-in, fixated on the parts of the body that is different. Or all too conscious of what is happening inside of you, that which only you can apperceive.  Once you felt normal, but no longer is it the truth." Share on X

Illness now claimed you as its reluctant victim, and as such, so too has weirdness; of not being normal.

Panicking Over Every New Twinge; Every Strange New Sensation

I cannot remember the time when every new twinge or unfamiliar sensation did invoke a fresh wave of panic. In my ‘normal’ days, the days before this illness became such a permanent and constant presence in my life, it was easy to brush off a twinge, or unfamiliar sensation as something benign and not a cause for concern.

Now, when met with such circumstances, more often than not, it is welcomed by panic and overwhelming anxiety.  A worry begins that this new twinge or sensation is a sign of another new symptom to add to the already long list. Or a signal from our fragile and broken body that something else is wrong, a new diagnosis for the medical profession to ascertain.  

"A worry begins that this new twinge or sensation is a sign of another new symptom to add to the already long list. Or a signal from our fragile and broken body that something else is wrong." Share on X

It consistently evokes the question of whether such misgivings are a warning of an imminent flare.  Or worse, the start of a deterioration in our conditions.

Accessing? When Amid Chronic Illness The World Can Become Inaccessible

In the land of normality, the world truly is your oyster. It is fully accessible, and the only decision is how to utilise such freedom.

When becoming chronically ill, and limited by the effects of severe and debilitating symptoms, doors begin to slam in your face. The world is slowly becoming inaccessible, and smaller in its choices available to you.

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When living with chronic illness and disability, the effects of such can often make the world feel inaccessible to you; your world and life becoming smaller.

The fear of triggering crippling pain makes it impossible to turn the lock and leave the comfort of home. Instead, resigning ourselves to another day of isolation, with no company but that of chronic pain.  And the company of several other loathsome symptoms.

"The fear of triggering crippling pain makes it impossible to turn the lock and leave the comfort of home. Instead, resigning ourselves to another day of isolation, with no company but that of chronic pain." Share on X

The internal battle between you and the door offering freedom can become a daily routine. A face-off with a door may seem ridiculous but when you’ve tumbled down a flight of stairs too many times to count, or not knowing when your legs are next going to give way, or experience dizziness so intense that the world feels unsafe, leaving the house can be terrifying.

"A face-off with a door may seem ridiculous but when you've tumbled down a flight of stairs too many times to count, or not knowing when your legs are next going to give way, leaving the house can be terrifying." Share on X

Public transport becoming inaccessible also, due to the unavailability of seats. Because of severe weakness and disabling pain, standing for an unknown period of time becomes untenable, and as such insurmountable.

Every day you are confronted with places or situations that are inaccessible to you due to the confines of illness and disability. No longer does it feel that you fit into the world around you.

"Every day you are confronted with places or situations that are inaccessible to you due to the confines of illness and disability. No longer does it feel that you fit into the world around you." Share on X

A person with a chronic illness or disability becoming a square peg trying to fit themselves inside a round hole.

Soothing Myself By Changing The Self-Talk

In a normal, ordinary world, I feel anything but, however. I feel different, peculiar, not normal. My ears are often ringing with the sounds of the names directed at me, freak, for example.

The neurological disorder and the symptoms that invariably accompany it sets me apart from everyone else. It’s a truth I have to accept; a part of my life that continually makes me feel different, and abnormal from others.

"FND and the symptoms that invariably accompany it sets me apart from everyone else. It's a truth I have to accept; a part of my life that continually makes me feel different, and abnormal from others." Share on X

But in an attempt to soothe myself from its effects, I often ask myself the question “What is normal?”

Because the truth is normal does not exist; it is subjective. For one person, something may be entirely normal but not so for a different individual.

What is normal is also contingent upon a diverse range of factors such as location or time. What is normal in one part of the world, for example, would be considered strange or abnormal in another. And something deemed to be normal in the Middle Ages, would not be so in today’s modern society.

So no my life consisting of pain, and numerous symptoms due to a neurological disorder may not be normal to others, but it is my normal. And maybe that’s OK because your normal may just sound just as strange to me.

"So no my life consisting of pain, and numerous symptoms due to a neurological disorder may not be normal to others, but it is my normal. And maybe that's OK because your normal may just sound just as strange to me." Share on X

The above post is part of the May Link-Up Party with A Chronic Voice. The aim of it is for bloggers and writers to share their stories and experiences of living with chronic illness through given prompts.

May Link-Up Party with A Chronic Voice
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Disability Blogger Award (x2!)

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On Sunday morning, I received a nomination for an award. And today, Thursday, I received another comment on my recent blog post letting me know I had received another nomination! The award is titled the Disability Blogger Award which recognises and acknowledges those bloggers whose niche is disability, chronic illness, mental illness or special needs.

Fellow blogger, Georgina from the Chronillicles blog had the idea for the award. She decided that disability and chronic illness deserved more recognition for their efforts and decided to create the said award.

The Disability Blogger Award Rules

The Disability Blogger Award Rules

  • Thank your nominator
  • Recognise Georgina from Chronillicles as the creator of this award and link her URL – https://www.chronillicles.com
  • Use the Disability Blogger Award logo somewhere in your post
  • Copy these rules onto your post
  • Answer your nominator’s questions
  • Write 5-15 of your own questions (they don’t need to be illness related)
  • Nominate 5-15 other disability, chronic illness, mental illness, or special needs bloggers
  • Comment on each of your nominees’ latest posts to tell them they have been nominated

Firstly I would like to thank the lovely Liz and Nikki who have kindly nominated me for this award. I am honoured and extremely flattered to be recognised amongst so many other wonderful writers.

Liz, blogs at the brilliant Despite Pain which offers readers many useful and insightful tips on how to forge a life despite pain. The blog also radiates hope and positivity that a happy and content life can still be found outside of chronic pain.

Nikki, from Brainless Blogger, is one of my favourite blogs to read. Nikki shares life with chronic illness and chronic pain in such a beautiful and eloquent, and despite the writing being deeply raw and personal, it’s profoundly relatable.

Thank you both.

Please do visit their blogs to enjoy their amazing writing and follow them.

Liz’s questions and my answers:

1. If you didn’t have a health condition, but you still wanted to blog, what would be your niche?

Books! Definitely books; sharing what I have been reading and insights into my favourite reads. Other than writing, especially, my work on this blog, books are my other passion. I have loved reading since childhood and can usually be found with a book in my hand. And my Kindle is one of my essential items on my packing list for holidays!

2. What is your favourite season and why?

Due to the symptoms associated with the neurological disorder I live, with, I often find that the hot and cold weather can exacerbate my symptoms. So, Winter and Summer can be problematic seasons for me, with flares becoming routine during the months these seasons reside. So, I would day Spring has become my favourite season – with it being not too cold and reasonably warm without the heat being unbearable. I also love all the colour and beauty that can be found during the Spring months, especially in nature. I do enjoy trips to the garden centre to peruse the beautiful and colourful flowers. And also, I am able to sit outside, even just in the garden, to get some welcome fresh air instead of being cooped inside the same four walls.

3. If you could time travel, which time would you travel to?

History was one of my favourite subjects when I was at school, and although I found it incredibly fascinating to learn about the periods in history we studied, the events and how people lived was usually unpleasant and gruesome. Place and events that I would not want to experience. Instead, I think it would be intriguing to visit the 60s or 70s when my parents were growing up and to meet and get to know my grandparents, especially those I lost before I ever really got to know them. It would also be interesting to know what my Mum and Dad were like before they became parents!

4. Healthy salad or chocolate brownie?

Although I enjoy eating healthily, allowing some semblance of control whereas our lives are usually controlled by our illnesses, I would have to choose the chocolate brownie! I am a bit of a chocoholic!

5. What’s the last book you read?

I just finished the incredibly moving ‘If Only You Were Here’ by Alice Peterson. It was a brilliant and captivating book, and a must if you enjoy an emotional read like me!

6. If you ruled your country, what would be your first new law?

What a brilliant question! I hate unkindness or bullying so I would create a ‘Random Act of Kindness’ Law to encourage people to be kind and help each other, even if it’s just in small, inconsequential ways. There are many horrible acts of violence in the world, so it would be lovely to see more good instead.

7. What is your biggest pet peeve and why?

People using disabled bays when they don’t have a blue badge! It is always annoying when I am out with my carer and am unable to stop somewhere I need to because there a lack of a suitable parking space, especially on days where my mobility is worse.

8. What’s the favourite blog post you’ve written?

Tough question as I didn’t realise how many I’ve written! One which I am proud of, and one which I loved writing was ‘Embracing The Warrior Inside.’ It’s a blog post that I can still look back and read, especially on days where I’m feeling low, and it reminds me of everything I have overcome and how strong I am. I hope everyone enjoys it as I had when I write it!

Nikki’s questions and my answers:

1. What is your favourite pain or illness distraction and why?

Reading; it’s one of my favourite past time’s anyway, but when I am in pain or overwhelmed by the other symptoms that I experience, I love how it can transport me into another world, or even allowing me to become someone else for a short time.

2. Do you have a creative outlet?

I have this blog obviously but other than that no. I did use to love making cards but found it to be very expensive and became very difficult due to trembling in my hands. Still, I do love writing though and keeping up with social media keeps me occupied.

3. What is your favourite book and tell me why

I have so many! My all-time favourite and one which I read, or at least try to is Little Women by Louisa May Alcott. It’s a classic, one which I have loved since I was a young girl. I don’t have any sisters myself, and loved the relationship between the four sisters; it’s a really heart-warming story.

4. When you are in a mental funk what do you do?

I look at my positivity board, filled with photographs of happy memories, as well as inspiring and uplifting quotes. Or if I am feeling a lack of confidence, I take a look in my jar of joy and remind myself of everything I have achieved despite chronic illness and the symptoms with which I live.

5. When was your last vacation and how was it?

My last holiday was last June, a cruise around Norway and Iceland, and a brief stop in Dublin! Cruising can be difficult, especially with a balance disorder and even more so when the seas are rough, but again it was a reminder of my resilience and strength in spite of the neurological disorder with which I live every day. And despite the many difficulties, I still am looking forward to future adventures.

My Nominees

The most difficult part is choosing nominees, especially as there are so many wonderful bloggers within the disability and chronic illness community. Even more so, when many of my favourite bloggers have already deservedly been nominated by other people. Many of the nominees are other bloggers who

Narrowing it to only 10 bloggers was incredibly difficult so I am sorry for anyone I have missed, as I think you are all amazing!

My 10 Nominees:

Make sure that you take a look at their incredible and inspiring blogs and look them up on their social media pages.

My questions for my nominees:

  1. If you had to write about something other than disability/chronic illness/mental illness or special needs, what would it be and why?
  2. If you could travel anywhere in the world, where would it be and why?
  3. What is the biggest thing you’ve learned about yourself since becoming disabled or chronically ill?
  4. What is your favourite comfort food?
  5. Name a literary character you can relate. What is it about this character that you can relate?
  6. If you had to recommend one place to visit near to where you live, what would it be and why?
  7. What is your favourite TV show to binge-watch when you are having a bad day?
  8. What is the one blog post you are most proud of and why?
  9. If you could recommend one blogger or blog to read, which would it be and why?
  10. If you were suddenly only able to use one social media site/app which would you choose and why?

Your blogs and the work you do is brilliant, but I know what continued health struggles can get in the way of blogging, so there are no time constraints with replying to the nomination. Take your time and congratulations to all!

And thanks again to Liz and Nikki for your nomination!

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