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When living with a rare disease threatens your financial stability
June 25th marks four years since I was diagnosed with myasthenia gravis (MG). Looking back, I remember the ancient Greek playwright SquirrelWho observed that “whoever learns must suffer. And even in sleep, the pain, which we cannot forget, falls drop by drop upon the heart, until, in our own despair, against our will, comes wisdom through the terrible grace of God.
From 2020 to 2024, my emotional pain diminished drop by drop. But this experience also brought wisdom and a new perspective on life.
Throughout my career, I have paid close attention to my finances. When I was diagnosed, I was on track for a comfortable retirement. I’m afraid stories with headlines like “40% of Americans are just one paycheck out of poverty” and I thought I was prepared. That article, published by CBS News in 2019, noted that “millions of middle-class Americans are just one lost paycheck away from poverty, with 4 in 10 considered ‘liquid asset poor’ or without enough money saved to handle even a sudden interruption in income.”
In 2020, I thought the firewall I built for myself would keep me safe from these types of financial threats. But I will soon discover that MG does not recognize firewalls.
My firewall included an income replacement insurance policy. I was a teacher and during the hiring process we had the option of choosing a policy that protected us against vagaries such as illness. Cautious about my finances, I signed up for the “platinum plan,” which would replace 66.66% of my salary if I became too sick to work, after a 60-day waiting period. I thought selecting this plan would protect me from the financial hardship the illness could cause.
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Losing and regaining stability
Then COVID-19 came along. In a strange way, for months this worked to my advantage. Classes moved online and my commute disappeared. It was even easy to take occasional naps and start to get used to MG.
Eventually, however, our school district required us to resume in-person instruction. At that time, MG had greatly weakened my immune system, which was one of the main factors that led my neurologist to recommend that I not return to campus.
The possibility that complying with the district mandate could lead to a serious or even fatal illness forced me to take a leave of absence. When the leave expired, I submitted paperwork to my disability insurance company to begin the income replacement process.
Every day, as the bills piled up, financial collapse loomed over me. When what I once considered a simple process continued to drag on, I hired a lawyer to resolve the matter. After that, the monthly payments started and my stress level decreased.
Stress plays a significant role in MG flare-ups. Decreasing it was a significant step forward in my treatment It is disease management flat. Later, I focused my attention on MG.
I joined a support group and made connections with both MG Community and the broadest rare disease community. I learned about self-care issues like nutrition and exercise. By taking proactive steps, my life regained some of the stability that MG had eliminated.
Fast forward to October 2023. That month, I received a letter from my disability insurance company claiming that I was no longer disabled. Payments would cease in 30 days, the letter warned. This meant that I would face a financial crisis again, which in turn would increase my stress level. So I hired a disability lawyer.
Six months passed without any income. Luckily, my family is there to support me. But what happens to those who aren’t so lucky? It is a national shame that our country has failed to create a social safety net strong enough to catch those who plunge into financial hardship, bankruptcy or homelessness due to a rare disease. To me, it is an indication of moral failure.
I think we have our heads in the sand on this. Until the sword falls on them, most people remain oblivious to this imminent threat. By the time they realize it exists, it’s already too late.
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