Jul 18, 2023
In life, we are often told to 'weather the storm' - a phrase suggesting we must endure challenging times and hope for eventual improvement. But what if the storm never truly subsides? Welcome to the world of living with chronic illness, where the storms are our ever-present companions.
My name is Kristina, and over the past two and a half years, I have been diagnosed with a multitude of chronic conditions including Hypermobile Ehlers-Danlos Syndrome, Small Fiber Neuropathy, Dysautonomia, Chronic Pain Syndrome, and Gastroparesis, among others. Currently, I find myself navigating a particularly difficult flare-up that's been lasting for months. It's a tough period, defined by heightened symptoms like dizziness, nausea, pain, and fatigue that keep me mostly bedridden.
It was only natural to initially perceive my diagnosis as a dead-end, a debilitating stop sign to the vibrant, ambitious life I had planned. I felt, and sometimes still feel, trapped in a dysfunctional body that didn't feel like mine. But over time, a flicker of acceptance ignited within me. I had to accept my conditions as an integral part of my life - a harsh reality, indeed, but a necessary step towards living a meaningful life amidst the storm.
Why discuss sustaining motivation amidst such adversity? Because it is what helped me transform my career and discover a new passion, even during my hardest times. Despite my illnesses, I started my own business, Aesthetic Alchemy, as a freelance brand designer. A far cry from my previous path in computer science, this venture has been a beacon of hope and purpose in a time of overwhelming challenges.
I write this, not just to share information, but to connect with others who are living the same reality. If you're weathering your own storm of chronic illness, know that I am uniquely positioned to understand what you're going through. So, join me as we explore ways to sustain motivation during chronic illness flare-ups, using a blend of research-backed strategies and my personal experiences.
As someone living with multiple chronic conditions, I'm no stranger to the concept of a flare-up. A flare-up, in simplest terms, is a period of time when symptoms of a disease or condition become worse or more severe. The intensity and duration of flare-ups can greatly differ from person to person, and even from one episode to the next. For some, a flare-up could last a few hours, while others may struggle with escalated symptoms for days, weeks, or even months.
Flare-ups can be prompted by a variety of triggers. For me, the mere act of standing up, walking, or eating can be enough to spark a flare. Moreover, for reasons not entirely understood, my symptoms always seem to intensify as the day turns into night.
A flare-up doesn't just impact one physically. Symptoms like dizziness and presyncope, nausea, fatigue, and urinary retention, can put a major damper on your day-to-day life. But it's the emotional and psychological burden of flare-ups that often weighs the heaviest.
The anticipation and anxiety of when the next flare-up might strike can be relentless. The frustration, disappointment, and sense of failure when you can't meet your personal expectations or participate in activities you once enjoyed can be disheartening. Flare-ups can be isolating, leading to feelings of loneliness, depression, and emotional exhaustion. The ongoing battle of managing symptoms, navigating limitations, and constantly re-adjusting to a new "normal" can take a significant toll.
It's a harsh reality of living with chronic illnesses, and one that we need to talk about more openly. Only then can we start to seek and share strategies for staying motivated through these trying times.
Living with chronic illnesses is like perpetually navigating a stormy sea, trying to maintain balance on a ship that’s constantly rocking. My conditions, including Hypermobile Ehlers-Danlos Syndrome, Small Fiber Neuropathy, Dysautonomia, Chronic Pain Syndrome, and Gastroparesis, among others, have been an unwavering test of resilience and patience. But what truly tips the scale are the flare-ups—those unpredictable periods when symptoms intensify, making it a struggle to even stand up, walk, or eat.
Flare-ups, in my personal and professional life, are akin to icebergs emerging from a foggy night. In their wake, they bring emotional turmoil, but also an inevitable disruption to my workflow. They raise daunting questions: What happens if I flare up in the middle of an important project? Can I fulfill my commitments? Am I enough, despite my limitations?
To weather these storms, I’ve sought shelter in therapy, which has proven to be a lighthouse in the darkest of times. Establishing a daily routine has become my compass, providing structure amidst chaos. Celebrating small victories, no matter how minuscule, has offered the much-needed wind in my sails, reminding me of my strength and resilience.
Redefining success has been another crucial step in my journey. For years, I chased an unrealistic perception of success—one that celebrated exceeding limits and accomplishing the impossible. But as my life pivoted with my diagnoses, so did my understanding of success. Today, success means making it through a hard day. It means accomplishing tasks while simultaneously taking care of myself. It means not compromising on self-care. It means redefining success on my own terms, in alignment with my own pace and capacity.
Remember, these strategies aren't one-size-fits-all. It's essential to tailor them to your unique circumstances and needs. What works for one person might not work for another, and that's okay. The most important thing is to keep striving for a better quality of life, regardless of the storms that might come your way.
In the midst of stormy flare-ups, when the winds of chronic illness threaten to blow us off course, it's essential to remember: you are not alone in this journey. Each of us weathering our unique storms shares an unspoken bond. An understanding. An empathy that stretches out like a lifeline in the churning seas.
Chronic illness may change the way we sail, but it does not define us. It demands we navigate life differently, more carefully. But it also provides us with a unique perspective, an appreciation for the calm moments, the small victories that others may overlook.
I hope that sharing my experience and strategies has offered some solace, perhaps even a lighthouse in the dark. I want you to know that it's okay to feel frustrated, scared, or tired. These feelings don't make you weak—they make you human. And being human means having the capacity to endure, to adapt, and to keep sailing, no matter how relentless the storm.
Remember, in our shared struggle, we find strength. In our shared vulnerability, we find resilience. And in our shared story, we find hope.
No matter the storm you're weathering, no matter the flare-ups you're facing, know this: You are not alone. You are seen. You are understood. And most importantly, you are capable of weathering the storm.