Why Me? When the Soul is Trapped

Why me? This question lingers in my mind, a persistent echo that has surfaced many times before, often at the most unexpected moments. It is a complex inquiry, one that is challenging to dismiss, even as I strive to focus on the positives in my life for which I am truly grateful. The warmth of kind souls, the support of friends, and the beauty of everyday moments serve as anchors, yet the question remains, haunting and unresolved. How does the universe decide whose genes become faulty? This is a profound mystery that eludes definitive answers, and perhaps there isn't one to be found.

Many doctors, despite their extensive training and experience, are barely aware of the rare connective tissue disease I have been diagnosed with. Those who do possess some knowledge often rely on limited and outdated information that fails to capture the full scope of this condition. Their understanding is often restricted to the more visible and common manifestations, leading to a narrow perspective that overlooks the complexities involved. They tend to believe that this genetic fault, which fundamentally affects the collagen in the connective tissue, primarily impacts the joints and typically causes no issues beyond hypermobile joints. However, this oversimplification does not reflect the reality of living with such a condition.

While it is acknowledged that this is a genetic disease, few realise that within this overarching category, there exist 13 distinct subtypes, each with its own unique characteristics and challenges. These subtypes involve 12 different known genes, each contributing to a spectrum of overlapping symptoms that vary widely depending on which specific gene is faulty. The intricacies of this condition are often lost in translation, leading to misunderstandings not only among healthcare providers but also within the broader community.

The symptoms can be diverse and unpredictable, ranging from chronic pain and fatigue to more severe complications that may affect various organ systems. The experience of living with such a condition can feel isolating, as many people are unaware of the subtle yet significant impacts these genetic anomalies can have on daily life. It is a constant balancing act, navigating a world that often lacks understanding and awareness of the challenges faced by those with rare genetic conditions.

In this context, the question of "Why me?" takes on a deeper significance. It is not merely a reflection of personal struggle but a broader inquiry into the nature of genetic predisposition and the randomness of life’s challenges. The interplay between genetics and environment, the role of chance in the development of health conditions, and the quest for understanding in a world that often feels indifferent to individual suffering all contribute to the complexity of this inquiry.

Ultimately, as I grapple with this question, I am reminded of the resilience of the human spirit and the importance of advocacy and education. By sharing my story and raising awareness about the nuances of this connective tissue disease, I hope to foster a greater understanding among both medical professionals and the general public. In doing so, perhaps I can transform my own struggles into a source of strength, not only for myself but also for others who may be navigating similar paths in silence.

No one chooses to be born with a connective tissue disease or genetic fault; it is an unfortunate reality that many individuals face. Yet, despite these challenges, we are all human beings striving to live our best lives, pursuing happiness, fulfilment, and health in a world that often seems indifferent to our struggles. It is inherently part of our nature to seek improvement and to aspire to better our circumstances, whether that involves personal development, emotional growth, or physical well-being. However, when it comes to healthcare, particularly regarding complex or rare disorders, the situation becomes more complicated and disheartening.

These conditions, which can drastically alter the lives of those affected, frequently receive little attention from both the medical community and society at large. This neglect is particularly troubling as it implies that because these disorders affect only a small portion of the population, those individuals are somehow deemed less valuable or less worthy of care and resources. Such a perspective is not only unjust but also highlights a disturbing trend in how we prioritise health issues based on their prevalence rather than their impact on quality of life. This results in significantly less funding and research directed toward these rare conditions, creating a vicious cycle where the lack of attention leads to further marginalisation of patients and their needs.

The underlying reasons for this disparity often stem from the financial motivations of the healthcare industry and pharmaceutical companies. Rare diseases are not seen as profitable ventures, which leads to a lack of investment in research and development of treatments. The reality is that human lives, including mine and those of countless others who share similar conditions, are often overshadowed by the pursuit of profit. The prioritisation of money and human greed over the well-being of individuals is a stark reminder of the flaws within our healthcare system.

As I navigate the complexities of my own health journey, I find myself grappling with a recent diagnosis of Myopercarditis as well, yet another rare disease that has added to the challenges I face. After being discharged from the hospital, I am still left with the persistent burden of significant chest pain and overwhelming exhaustion. This debilitating fatigue and pain severely limits my ability to work, make more money and engage in daily activities that many take for granted. The struggle to "push through" these symptoms is fraught with danger; doing so could exacerbate my heart condition, potentially leading to chronic heart failure—an outcome that is both frightening and all too real.

The emotional toll of living with such diagnoses is profound. Each day becomes a balancing act between managing my health and longing for a semblance of normalcy. The fear of what the future holds looms large, and the uncertainty surrounding my condition adds layers of anxiety to an already challenging situation. It is a glaring reminder that behind every statistic and every rare disease, there is a person—a person with dreams, aspirations, and a deep desire to live a life that is not defined solely by their health challenges. In a world that often overlooks the plight of those with rare conditions, it is essential to advocate for change, to demand attention and resources, and to ensure that every individual, regardless of their circumstances, is valued and supported in their pursuit of a better life.

However, at this point, after dealing with illness for most of my life and watching it worsen as I age, I'm eager for some peace of mind. But even gaining that peace for a health condition without a cure comes at such a steep price through genetic testing. This disease has already taken so much from me, and I really don't want it to cripple me financially too. Especially if my life might end sooner than it would for others. I want that peace of mind to figure out what I truly want from life with the cards I've been dealt and whatever borrowed time I'm living on. It's challenging to plan a life when you're unsure which timeline you're on, and if you could get a test to determine that with certainty, wouldn't you do everything you could to get it done?

I have been considering selling my Mustang to cover these tests and pay off some medical debt, but it's the one thing that still brings joy to my life. It reminds me of when I was well enough to participate in motorsport events, which truly brought me excitement and happiness. Those who share a passion for cars and motorsport will understand this sentiment, and it's important to me. Although it feels difficult to ask for help, I have been fighting for over a decade to discover what is wrong with me. After repeated misdiagnoses and dismissals, I finally have an explanation for my condition. However, I am being denied the testing needed to confirm the specific subtype, which would allow me to educate myself and take proactive steps to manage my disease. Despite meeting all the clinical and historical medical criteria for the syndrome, I am told I don't meet the strict criteria for a definitive diagnosis through the public health system.

In light of the current economic situation worldwide, I completely understand if donations aren't possible right now—times are indeed tough for many individuals and families across the globe. Economic uncertainty, rising costs of living, and the challenges posed by recent global events have made it increasingly difficult for people to contribute financially, even to causes that are close to their hearts. This reality is something we all must acknowledge and empathise with, as many are navigating their own financial struggles and uncertainties.

However, amidst these challenging times, I have one heartfelt request that I believe can make a significant impact: please share this post! Sharing this message on your social media platforms or within your personal networks can help reach a wider audience and bring attention to the critical issues at hand. By doing so, we can spread awareness about how insidious these diseases can be, affecting countless lives in ways that are often not visible to the public eye.

Raising awareness is a powerful tool in the fight against these conditions, as it can lead to increased understanding, support, and ultimately, action. Many people may not be fully aware of the struggles faced by those affected by these diseases, and through sharing, we can educate others about the symptoms, challenges, and the urgent need for research and support. It is through collective efforts that we can foster a sense of community and solidarity, encouraging those who may be in a position to help to consider contributing in whatever way they can, whether that be through donations, volunteering, or simply spreading the word.

Your support in sharing this post could potentially reach someone who has the means to help or someone who is experiencing similar challenges and needs to feel less alone. Together, we can create a ripple effect of compassion and awareness that can lead to positive change. Thank you for considering this request and for your continued support in raising awareness about these important issues! One love.