My journey is one of resilience, self-advocacy, and hope.

The story of Rain

My name is Rain,

From my earliest memories, I have carried the weight of excruciating stomach pains. These pains stole away the joys of a carefree childhood, leaving me restless and calling out for my mother. Sadly, she was taken from me by the cruel grip of breast cancer in 2017. But in those moments of agony, she would rush to my side with a warm wheat bag, offering me some solace. She guided me to the bathroom repeatedly, where I endured painful episodes that caused me to miss out on school. However, the world around me labeled me as a hypochondriac, dismissing my concerns and leaving me feeling misunderstood and alone.

As the years went on, I found myself faced with a multitude of new symptoms. Bladder issues, headaches, body aches – they all became a part of my daily existence. My tailbone and ribs seemed to defy the norm, causing me further discomfort. Chronic pain became a relentless companion, tightening its grip on me with each passing day. It became an invisible burden, affecting every aspect of my life. Even the simplest tasks became Herculean challenges as I battled through the pain.
Yet, the struggle to find a proper diagnosis proved to be the greatest hurdle. Doctors were perplexed by my symptoms and quick to dismiss them as insignificant or products of my own imagination. Their dismissive statements left me feeling frustrated, invalidated, and doubting my own sanity. The medical community, where I sought help, failed to understand or support me, only adding to my suffering.
In the midst of this turmoil, my mother stood as my unwavering pillar of support. She never doubted the legitimacy of my pain and fought tirelessly for me. Her belief in my experiences and her determination to find answers gave me the strength to carry on even after her passing. I learned from her the importance of being my own advocate, empowering me to speak up and demand the attention and care I deserved. Her story lives on in my heart, and I am forever grateful for the lessons she taught me.
It was in 2021, after the birth of my son, that I reached my breaking point. My acid reflux took a turn for the worse, robbing me of sleep and causing me to regurgitate meals. Despite being propped up, the discomfort persisted. Looking back, I was diagnosed with GERD in 2018, but the condition only seemed to worsen over time. Tachycardia, a rapid heart rate, became more pronounced, and my aches and pains became debilitating.
Since 2021, I have faced more medical gaslighting and neglect than my mental health could bear. But I refused to let the pain and chaos consume me. I delved deep into research and became my own advocate. Today, I stand tall, armed with a list of diagnoses that explain my experiences: POTS, Nutcracker syndrome, May-Thurner syndrome, pelvic congestion syndrome, thoracic outlet syndrome, ADHD, PTSD, and the search for the specific type of Ehlers-Danlos syndrome I have. I have faced perfect bloodwork, inconclusive scans, and specialists turning me away, all while enduring the strain on my mental well-being. But I refused to be defeated.
Unable to work due to the severity of my conditions, I pushed through the pain and agony to build a business called “We Scream Rare.” It is not only a means to support my medical costs but also a platform to raise awareness and share stories. I am still learning the ropes of entrepreneurship, but I am driven by the desire to educate myself in health and advocacy. I am currently awaiting the outcome of my university application in the field, determined to share my story and build a community that offers hope to those who suffer. I want to raise awareness that if something feels wrong and you’ve been dismissed, keep seeking second opinions.