We must accept finite disappointment, but never lose infinite hope. - Martin Luther King
In the vast landscape of healthcare, where we seek solace and support, it is disheartening to find ourselves abandoned by the very safety net we trust. Today, I share the heartbreaking experience of being let down by my medical insurance, who denied coverage for my long-awaited laparoscopic excision surgery, leaving me shattered and questioning the system that is meant to protect us.
Endometriosis, a condition recognised as one of the top 20 most painful in the world, remains a silent struggle for countless warriors. It is inconceivable that this debilitating disease, with no cure in sight, is often disregarded and dismissed. We endure years of undiagnosed pain, battling a medical system that fails to acknowledge our cries for help. The pain is real, and the tears we shed are valid, yet so many doctors and individuals refuse to believe us.
The blow of rejection hit me with an intensity I never anticipated. A day before my scheduled surgery, my medical insurance callously declined coverage for a procedure that was crucial and long-awaited. I submitted all the necessary documents, motivations, and referrals, but it wasn't enough to convince them of the urgency and necessity. The weight of their indifference crushed me, leaving me in a state of profound disappointment and heartbreak.
For 48 hours, I wept uncontrollably, my anguish pouring out like an unyielding torrent. The pain of being denied the care I so desperately needed cut me to the core. It was a level of despair my husband had never witnessed before. In that moment, I felt as though my insurance company was coldly affirming that my illness, my pain, and my pleas for relief were inconsequential. I was left feeling as though they were leaving me with two grim choices: succumb to the darkness of opioid addiction to manage my excruciating pain or resign myself to the thought that death might be a preferable escape from this torturous existence.
How can those who hold the power to decide our fate not be medical experts themselves? The audacity of being told that continuing with ineffective ablation surgeries, performed by a regular gynaecologist (no offence to my wonderful gynae), would suffice for a stage 4 endometriosis patient like myself with deep infiltrating endometriosis, exposes the inadequacy of decision-makers relying on mere scripts and inefficient algorithms. Their lack of education and understanding only perpetuates the suffering we endure.
The endometriosis community knows all too well that living with this disease is a perpetual battle, one in which we must tirelessly advocate for ourselves. The fight for recognition, understanding, and support is far from over. We need widespread awareness, acknowledgment, and acceptance from the entire medical fraternity. Medical insurance companies must start to recognise endometriosis as the chronic illness it is, providing the coverage we desperately require. But before we even get there, it's high time that our National Department of Health acknowledges the magnitude of this disease. Their health awareness calendars have yet to include Endometriosis Awareness Month (March) or Adenomyosis Awareness Month (April). Yes, I know that so many awareness days could be added to their calendar. Perhaps we need an entire day or conference dedicated to the discussion.
It's essential to recognise that the lack of endometriosis awareness and support is not confined to South Africa alone; it is a global issue. In a world where the recent COVID-19 pandemic garners widespread attention, the plight of endometriosis continues to go unnoticed. Before my own diagnosis, I too knew only the name of this condition, nothing more. However, this lack of awareness should not breed complacency. It is a call to action—a plea for change.
Imagine the impact if just one medical insurance company took a stand and offered comprehensive coverage for endometriosis warriors. The financial relief, the validation—we yearn for these things. While the journey to widespread recognition and support may be long, we must take it one day at a time, one fight at a time. Together, as we raise awareness, wear our yellow ribbons, and advocate for change, we shall overcome the barriers that impede progress.
Before I can rejoin the crusade to raise awareness and drive change, I must first rebuild my own strength. I must gather the shattered pieces of my spirit, rise above the hurt and heartbreak, and find the resilience to resume this battle. As warriors, we hold immense power within us, and together, we can pave the way for a future where endometriosis is no longer a misunderstood sentence, but a recognised and supported reality. I am determined to see a change in my lifetime.
The fight against endometriosis is not just an individual struggle; it is a collective effort to educate, advocate, and demand the recognition and support we deserve. Together, we can change the narrative surrounding this disease, ensuring that no one else experiences the despair of being let down by a broken system. As we continue to raise our voices, let us hold onto hope, believing that one day, our cries will be heard, our pain acknowledged, and our battles won.
Signed
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