“Life isn’t about waiting for the storm to pass; it’s about learning how to dance in the rain.”
For a long time, I felt delirious, exhausted, and completely worn down. Every step I took felt heavier than the last. I was constantly out of breath, and the weight of life seemed unbearable. There was so much on my plate—work, personal struggles, life’s constant pressures—and yet I kept pushing myself to just “drown in work” and carry on. But the façade was crumbling. Everything felt like too much. I had recently gone through a separation, was searching for a new flat, and was working endlessly. Still, I tried to smile, tried to stay strong, even when every fiber of me was screaming otherwise.
For four years, up until the day I collapsed, I battled recurring inflammations of my bladder and stomach. Every flare-up was severe enough to land me in the hospital. I underwent endless gastroscopies, none revealing the cause, and each time, after a few weeks, I felt marginally better—only to relapse again. After a vacation in New Zealand in 2015, strange rashes appeared on my face, feet, and hands. I saw multiple dermatologists and alternative practitioners, tried countless ointments, but nothing helped. At one point, the rash on my feet was so painful I could no longer fit into my usual shoes or walk comfortably. Strangely, over time, you just get used to these symptoms and find ways to navigate life around them.
By 2017, insomnia had taken hold of me, and I was slowly breaking down. My rashes persisted, my stomach ached relentlessly, and yet no one could pinpoint why. I felt like I was losing my mind, exhausted but determined to function, to keep going, no matter the cost. In 2018, I was completely drained—social life abandoned, existing solely to work and sleep. I had to eat more than usual just to maintain my weight, while exercise became almost impossible. Even so, I sought solace in positivity courses online, trying to sugarcoat my suffering with optimism.
At the start of 2019, concerning blood markers and pressure on my heart led to a hospital stay. After a few days, once the inflammation subsided, I was released and flew off to a long-anticipated vacation in Africa. But instead of rejuvenation, I returned more exhausted than ever. I forced myself back to work, hesitant to call in sick again. Within days, my body finally rebelled: fever spiking to 104ºF, immobility, overwhelming fatigue. My mother recognized the severity of my condition and rushed me to the hospital—thankfully in time.
What followed felt surreal. Pain medications offered fleeting relief, but my condition worsened. I was unexpectedly moved to the ICU and then airlifted via helicopter to a larger hospital in Wiesbaden. Excited by the novelty of flying, I didn’t fully grasp how critical my situation was, gazing out at the world as I lay on the stretcher.
In Wiesbaden, I spent two weeks on a normal unit. Antibiotics didn’t work, fluid built up in my lungs, and every bone in my body ached. Doctors warned my heart was enlarged. Fever, confusion, and relentless pain dominated every moment. Then, a calming presence appeared: the professor of the rheumatic unit, a blonde woman with a gentle voice. She guided me through countless tests, explaining that my kidney was struggling, water had accumulated in my lungs, and my heart was stressed. I could hardly believe it.
Systemic lupus erythematosus. The diagnosis hit me like a thunderbolt. I was immediately given high doses of corticosteroids, soon followed by immunosuppressants. I was too weak to stand, walk, or care for myself. My lung was punctured to drain fluid, my fever persisted, and yet slowly, treatment began to stabilize me. After four weeks, I was released—a physical and emotional wreck. I cried for months, haunted by exhaustion and fear, unable to sleep, anxious that I might not wake up again.
Everyday tasks were monumental. Walking, showering, even making a phone call left me drained. My face was bloated from medication, and weakness made me frustrated and ashamed. After nine months, I attended a private holistic clinic for four weeks—the first real improvement since my hospitalization. I learned to care for my nervous system, gained tiny victories like 30-minute walks, and was finally treated as a whole person, with fears and experiences acknowledged. Despite progress, setbacks were inevitable.
“Pressure comes from within and must be mastered from within.” My kidneys and blood markers fluctuated wildly, as did my energy. Eventually, I stopped fighting my body and accepted the reality I lived with. Day by day, step by step, I focused on self-love and mental health. My body had endured so much and remained loyal to me. Slowly, I learned to appreciate it.
I am proud of the optimism and resilience I’ve cultivated. I’ve learned to take responsibility for my own wellbeing, to question recommendations, and to honor both body and soul. Diet, gentle yoga, therapy, and self-care became my tools. My journey is far from over, but I know I am strong enough to walk my path with joy and determination. I survived—and that is enough.
I dream of future adventures with loved ones. Memories of travel and cherished moments keep my heart afloat, filling me with gratitude. Life, despite its hardships, is beautiful. I no longer waste energy on complaints or self-pity. I am thankful for family, friends, supportive colleagues, and every person who helped me navigate this treacherous disease. Sharing my story is my way of raising awareness and giving hope.
To anyone who is healthy but unhappy, overworked, or stressed: change your life now. We have one life—a life that can be magical, fulfilling, and joyful if we choose it.
My brother, Frederic, wrote a poem for me that captures this journey perfectly:
WEAR YOUR SCARS LIKE WINGS
a kid asks his mom
when will this pain pass
she blows gently on the scratch
and says it will not last
yet it leaves a mark
a teen asks his dad
why her heart still clings
he tells her
one day it will sing
yet it leaves a sting
you shout into the universe in disbelief and cry
the only question why
you think it won’t pass by
yet one day your tears are dry
there is a bright blue sky
with all those scars and a little smile
you’ll spread your wings and fly
—Frederic Scholtka
