Hello, I’m Bryan, and I’ve been navigating life with Common Variable Immunodeficiency (CVID), specifically dealing with Hypogammaglobulinemia (a mouthful, isn’t it?). Rather than delving into the general implications (you can always look that up if you’re curious), I’d like to share how CVID has shaped my journey, offering insights into how I manage its impact on my life. My intention is to pay forward the invaluable guidance, hope, and inspiration I’ve received from fellow CVID individuals. There’s one person, whom I encountered briefly in the hospital, whose influence on my life remains immeasurable, though they may never be aware of it.
Before we dive deeper, it’s essential to acknowledge that my experiences, choices, and perspectives may not align with everyone. Even with identical diagnoses, factors like our social context, personalities, support systems, and geographical locations ensure that the effects of CVID vary significantly. We’re all intricate beings with unique lives, so comparisons, especially engaging in a “who is more disabled” contest, lead us nowhere. Through sharing my authentic experiences, my hope is to resonate with some of you and contribute positively to your lives.
Pre Diagnosis, Pre-Ig
Reflecting on the first decade of my life is an exercise in revisiting a tumultuous journey marked by chronic illness and the quest for answers. Pre-diagnosis and pre-immunoglobulin (Ig) treatments, I found myself trapped in a cycle of relentless medical appointments and system transitions. The narrative of those years is not merely one of hardship; it’s a complex tapestry of illness, fatigue, and an unrelenting search for understanding.
The relentless pursuit of a diagnosis led me through an array of treatments and dietary changes, each avenue explored in the hopes of uncovering the root cause of my ailments. From a young age, my existence became intertwined with the medical realm, subjected to countless examinations and investigations. Amidst this intricate web of medical encounters, a few remarkable physicians and nurses emerged as beacons of empathy and genuine connection. Their names linger in my memory as a testament to the few who saw beyond the case study and acknowledged the capable child within.
Yet, the prevailing sentiment during those years was one of dehumanization. The relentless focus on my condition overshadowed my identity, leaving indelible emotional and psychological scars. While the exceptional healthcare professionals brought moments of light, the overall experience eroded my sense of physical autonomy, a burden that I continue to carry.
Facing mortality at such a young age was a challenge beyond my comprehension. The expectation to be a “brave little soldier” and the strain on my family to cope added layers of complexity. My parents and siblings navigated this uncharted territory with strength, concealing their own struggles to offer unwavering support. In the isolation imposed on us, the narrative was clear – we had to confront this on our own.
Managing the physical aspects of my illness became a learned skill. By the age of ten, my knowledge surpassed that of many adults in anatomical structures and physiological functions. Yet, the emotional toll remained largely unaddressed. The mental and emotional strains of living with Common Variable Immunodeficiency (CVID) demanded resources beyond our grasp. As a family, we coped admirably with the physical realities, but the emotional toll necessitated a more nuanced approach.
In hindsight, fostering tools and skills to navigate the emotional and psychological facets of CVID would have been invaluable. Parenting, already a formidable challenge, should not be compounded by assuming the roles of full-time nurse and caregiver. Looking back, I yearn for the support services and counseling that could have eased the emotional burden on my family.
Living with CVID requires a holistic perspective on health. Beyond the numerous medical appointments, seeking professional help to navigate the emotional and psychological impact is crucial. Developing a more comprehensive outlook on health has significantly enhanced my quality of life, prompting the realization that seeking help sooner would have been a transformative step toward overall well-being. The journey continues, shaped not just by physical resilience but also by the ongoing pursuit of emotional and psychological equilibrium.
Post Diagnosis, Post IVIg
Approaching my eleventh birthday marked a pivotal moment in my life – the revelation of a diagnosis that provided validation and clarity to years of grappling with an invisible struggle. No longer was I contending with skepticism or questioning glances; I could now articulate a name for my condition. This acknowledgment was liberating, yet it also ushered in the realization that this was a lifelong companion, a reality that carried both relief and apprehension.
Shortly thereafter, IVIg therapy entered my life, catalyzing a transformative journey. The infusion of energy and reprieves between illnesses allowed me to reclaim a semblance of normalcy. For the first time, I experienced the joys of childhood unburdened by the shadows of hospitalization. The initial adjustment to the treatment posed challenges, but gradually, I attained a level of health that was truly gratifying.
At the age of 15, I delved into unconventional pursuits, embracing fencing and offroad unicycling. The outdoors became my canvas, and I immersed myself in the thrill of extreme unicycling. Securing sponsorship and joining the Unicycle.com-Canada factory team became not just achievements but affirmations of resilience. Each scrape and scar, earned through daring feats, bore testament to a life lived fully, despite the risk of injury and infection.
Extreme unicycling imparted a profound realization – life, regardless of health constraints, is inherently fraught with risks. Every decision, from venturing outside to engaging in daring unicycle stunts, carries its own set of risks and rewards. Recognizing the unique risks posed by Common Variable Immunodeficiency (CVID), I navigated life’s choices with a conscious understanding of the potential rewards. Living in a bustling city, attending college amidst sneezing classmates, and relying on public transit became intentional choices, acknowledging the accompanying risks. While the germ-safe cocoon beckoned, the exuberant joy derived from conquering mountainous drops on a unicycle underscored the notion that certain health risks were indeed worth taking.
Deciphering which risks contribute to a net benefit in life as a person with CVID emerged as a guiding principle. Balancing the thrill of unicycling adventures with prudent health choices, I embraced the philosophy that a life well-lived transcends the boundaries of immunodeficiency. In the tapestry of risks and rewards, I discovered the resilience of the human spirit and the capacity to savor the extraordinary amidst the constraints of CVID.
Twenty Years Post Diagnosis, Post Sub-Q Ig
In 2007, I embarked on a journey to a bustling city to pursue my dream of becoming a Registered Signed Language Interpreter. After three years of immersive education, I proudly graduated with the credentials that propelled me into a fulfilling career. Over the past seven years, I have attained the Medical Sign Language Interpretation Accreditation, and I currently work as a dedicated Medical Sign Language Interpreter.
My chosen profession aligns harmoniously with my experience of chronic fatigue. I’ve discovered that engaging in intense, short bursts of work consistently suits me well. Having traversed the intricacies of the medical system as a patient has endowed me with a unique perspective that I bring to every situation. The challenges of this work resonate deeply with me, and the meaningfulness it holds is profound.
Beyond my professional pursuits, I am concurrently pursuing a degree in Health Science with aspirations of obtaining a graduate degree in the same field. My goal is to leverage my multifaceted experiences as a patient, practitioner, and aspiring scholar to contribute towards enhancing the medical system’s support for language minorities and individuals with chronic conditions.
Presently, I no longer perceive my body as an adversary. The war against my body, fatigue, and CVID was a draining battle that I chose not to perpetuate. Instead, my focus has shifted towards health promotion and investing energy in activities that enhance my vitality and fortify both my body and mind. Remarkably, I have ventured into competitive cycling, covering distances on my bike that once seemed unimaginable.
My Reflection on my Journey
This year marks two decades since my diagnosis and initiation of Ig replacement therapy, a significant milestone that prompts reflection on the transformative journey these years have encompassed. The contrast between my ten-year-old self and the present-day me, who owns a business, pursues health science studies, and commutes daily by bike, is staggering. If I could convey this reality to my younger self, the disbelief would likely manifest through a stare, coupled with a cough induced by a lung infection – a stark reminder of the physical struggles I once faced.
Recollections of the past evoke memories of weakness so profound that even navigating my house felt like an arduous marathon. The persistent inquiry of “Are you okay?” echoed in response to my visibly ailing appearance. Back then, the yearning for normalcy mingled with the disheartening realization that I was a passive observer of others leading their lives. Today, I proudly declare my divergence from normalcy. Through a succession of incremental strides and unwavering effort, I’ve forged a life that fills me with pride and profound meaning.
CVID’s impact, akin to all chronic illnesses, varies across individuals. My journey with CVID is one characterized by passion, curiosity, challenges, and moments of pure enjoyment. It’s not always a smooth ride, and there are instances when acceptance wavers, but CVID has become an integral facet of my identity, contributing to the awesome person I perceive myself to be.
In sharing my personal narrative and the lessons I’ve gleaned, my aspiration is to offer guidance or resonate with those navigating a similar path. I encourage individuals grappling with CVID or other chronic illnesses to seek connections within these communities. My journey has been fortified by numerous villages and a wealth of support from friends, family, and those who generously shared their own stories. To all who played a role in my narrative – thank you.