Imagine each morning unfurling with a heartbeat that races with life’s fragility. As your eyes flutter open, your heart whispers a thankful prayer – gratitude for another day’s chance. This invocation is more than words; it’s a profound recognition that the gift of life is precarious. You, the recipient, wrestle with chronic illnesses that cast shadows of uncertainty. Each breath becomes a testament to your fight for life and health. This is the realm where every minute counts.

A Glimpse into My Journey:

Welcome to my reality. At the tender age of 13, I was introduced to the realm of Type 1 Diabetes. Allow me to clarify the distinction between the two types of diabetes for those still uncertain. Type 1 Diabetes entails a pancreas that ceases to function. It’s as if a weary employee walks off the job, saying, “I’m done.” Upon diagnosis, a whirlwind of introspection ensues. Every choice, every morsel of food, every instance of inactivity is scrutinized. The self-interrogation is relentless. What misstep led to this? Could I have prevented my pancreas’s betrayal? The truth about Type 1 Diabetes is stark – there’s no culpability.

The Battle Within: Autoimmunity Defined:

In the corridors of Type 1 Diabetes, the body’s internal warfare plays out. Autoimmune in nature, this condition sees the body pitted against itself in an unending conflict. It’s a ceaseless combat, each moment demanding immense energy. The fatigue – both physical and emotional – is unrelenting. Think about the sheer effort required to halt one half of your body from attacking the other perpetually. The result? A constant state of exhaustion.

Unraveling the Myths of Misunderstanding:

The outside world often conflates my diabetes with Type 2 Diabetes, an adult-onset variant often associated with lifestyle choices. However, the disparities are significant. In Type 1 Diabetes, daily insulin injections or insulin pump therapy are essential for control. I, as a teenager, encountered the murmurs of misunderstanding. Whispers reached my ears – “She’s got the sugar,” “She’s a bad diabetic,” “the bad kind of diabetes.” These labels stung, a stark reminder that public perception can be cruel. Even my relatives echoed this narrative, embedding the notion that I was “bad” due to the necessities my condition mandated.

Walking the Path of Potential Complications:

I embarked on my journey with an ominous prediction – if I could surpass 25 years without succumbing to the common complications of Type 1 Diabetes, I would be deemed fortunate. My Grandfather’s battle with the same condition, coupled with kidney failure, underscored the ravaging potential of diabetes. I fervently urged him to manage his diabetes to avert further devastation. His resistance to insulin struck me as absurd back then, only to return as a haunting reflection.

A Life Dictated by Food:

For the diabetic, life becomes intricately entwined with food – a complex dance of dosages and dietary considerations. Restrictions loom large, rendering a once mundane activity into a math-laden puzzle. Carbs, grams, calories – these become daily calculations intertwined with insulin doses. Amidst this numerical frenzy, a dangerous road unfurled. Many Type 1 diabetics, including myself, encountered eating disorders as a consequence of the all-consuming preoccupation with sustenance.

Breaking the Stereotype:

I was far from the conventional portrait of an eating disorder patient. The image of a rail-thin, obstinate 15-year-old girl stubbornly denying herself sustenance was the stereotype etched in my mind. However, life had other plans for me. At the age of 23, I was a married woman, a mother to a cherubic little girl, and unexpectedly plunged into the tumultuous depths of an eating disorder’s hellish grip.

Diabetes and Pregnancy: A High-Stakes Balancing Act:

Pregnancy brought about a heightened vigilance regarding my diabetes. The specter of birth defects loomed large, a consequence I was determined to evade. My commitment to meticulous blood sugar control was unwavering, ensuring that my daughter wouldn’t bear the brunt of my condition. Yet, the pursuit of optimal blood sugar led me down a precarious path. The pendulum sometimes swung too far, sending my blood sugar levels plummeting. An urgent snack intervention became a recurring necessity, driving up the scale – a cardinal sin in the world of diabetes management.

Unraveling the Puzzle: A Dangerous Revelation:

Post-delivery, contemplation led me back to a revelation from before my diagnosis. I recalled the days when my sugars soared – unbeknownst to me then – causing an astonishing weight drop. The realization dawned: a lack of insulin during those high-sugar phases triggered the weight loss. Thus was born an idea that would cast a shadow over the years to come. An eating disorder clawed its way into my life, edging perilously close to obliterating it on multiple occasions. My health spiraled into disarray; mentally, I was teetering on a precipice. As the pounds melted away, I remained imprisoned within thoughts branding me a “bad” diabetic and condemning me as “too fat.” A cruel cycle formed – the thinner I became, the greater my mental distress. A sinister spiral gripped me, one leading dangerously downward.

Not Dwelling on the Details but on Mental Health’s Importance:

Revisiting the minutiae of my eating disorder journey isn’t my intention here; I’ve penned an entire book on that subject for those interested. What I wish to emphasize is the urgency of addressing mental well-being alongside physical health, especially in the wake of a diagnosis. While our focus often centers on the physical ramifications, we mustn’t overlook the emotional and psychological turmoil new patients grapple with in the aftermath of diagnosis. The weight of a new reality, coupled with its associated challenges, can have profound implications for mental equilibrium.

A Child’s Worries, An Adult’s Struggles:

In the throes of diagnosis, a disheartening truth stood stark – not a single medical provider extended the courtesy of inquiring about my mental state. A mere 13 years old, confined to a hospital bed, I grappled with unfathomable questions. Would I see another day? Could I survive this battle? And amidst the clinical data, one question echoed loudest – how does one cope with this new reality? The emotional avalanche that follows a diagnosis remains unaddressed, an oversight that leaves patients navigating uncharted waters alone.

Survival Versus Living: A Neglected Aspect:

I learned how to “survive” diabetes, mastering the mechanics of blood sugar checks, insulin preparation, and meal tracking. However, nobody equipped me to “live” with diabetes. Manuals and videos unveiled the technicalities, but no roadmap existed for the “real life” that beckoned beyond the diagnosis’s confines.

Kidney Disease: A Fateful Intersection:

Three years ago, another chapter unfurled – a diagnosis of Stage 3/4 kidney disease, an all-too-common fate for diabetics. Yet, my own choices, echoing the ones I chastised my Grandfather for, expedited the journey. Strangely, life had looped back to the same disease that had taken him. Changes loomed once again – dietary shifts medication adaptations. But this time, an essential shift occurred. 

I resolved to prioritize mental health – a dimension missing from my initial diagnosis. It was time for a thorough exploration, bypassing the dietician’s lackluster guidance and venturing into a realm that should have been integral from the start. Mental health education should be interwoven into the diagnosis, for understanding its intricacies is pivotal when facing life-altering illnesses. It’s not just about fostering mental well-being; it’s about bolstering holistic physical health.

A Missing Link: Mental Health Amidst Physical Wellness:

Medical teams passionately advocate physical health, often relegating mental well-being to the sidelines. Yet, the interplay between the two is undeniable. A separation isn’t tenable; they must be addressed as interdependent components of holistic health.

A Dance of Survival and Living:

And so, life goes on – a dance with both Diabetes and Chronic Kidney Disease. Survival no longer satisfies; living in fullness has taken its place. The specter of a low blood sugar’s nocturnal arrival remains, a reminder of life’s delicate balance. But precaution replaces fear. What changed? I silenced the negativity of others, disentangling myself from the cacophony that stifled my thoughts. Obsession transformed into purposeful engagement with health, buttressed by unwavering prayer. The divine isn’t everyone’s choice, but in my struggle, I found solace in a higher presence that understands. Amidst life’s struggles, God doesn’t burden us beyond what we can bear, even as we question this truth at times.

Shared Burdens: You Are Not Alone:

This narrative spirals to one resounding truth – if you grapple with a weighty burden in your life, you’re not alone. You’d never guess that beneath my exterior lies a reservoir of anxiety. But it’s there. You’d never surmise my history as a recovering addict, but that’s a part of my story, too. I know the sting of being labeled “bad.” During the darkest days of my eating disorder, the world slapped labels like “crazy,” “irresponsible,” “bad parent,” “sinner,” and “drug addict” onto me. None of these labels truly defined me, yet wresting back my identity post-recovery was arduous. Rebuilding trust and dismantling misconceptions – it was a battle fought with relentless determination.

Choosing Whose Words Echo:

Here’s the crux – the people who truly care for you won’t add to your anguish. Yet, the decision rests with you – whose words will echo in your mind? It’s your prerogative to distance yourself from those who drag you down, to silence the negative echoes. I severed ties, unfollowed, and created space for those that impeded my recovery. You can’t heal within the same environment that inflicted wounds; recovery falters where relapse lurks. The echoes of negativity can be stubborn, but remember, you control the guest list in your mental space. Some voices can be evicted, freeing you from their fruitless hold.

A Sanctuary to Vent and Connect:

Seeking a haven for your thoughts? We’re here for you. While not professionals, we are survivors – individuals who’ve learned to defeat our own worst enemies, individuals who’ve recaptured the joy of living. Every day, I fight to live, not just to survive. The same path is yours to tread.

 

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