Sick and Unemployed: What Do You Do When the Money Dries Up?
A look at the financial burden of an atypical hemolytic uremic syndrome diagnosis
Those of us living with a rare or chronic disease frequently talk about hospitalizations, medications, symptoms, fears, near-death experiences, and so much more. But something we don’t often talk about are finances.
When the COVID-19 pandemic descended upon us, the International Labour Organization warned in April 2020 that nearly half of the global workforce was at risk of losing their livelihood — and many did, unfortunately. Fast forward to 2022, and the world also faced sky-high inflation. As of November, 63% of Americans were living paycheck to paycheck, according to CNBC. I started my medical journey as one of them.
A life reset, then hardship
At the end of 2019, I was at the top of my game. After slowly picking myself up from a hard divorce, I lost 110 pounds, purchased my first home, and moved to a new city with my children. I was determined to renovate my new home all by myself — and I did. I also started a new job, and even started dating again for the first time in years.
When COVID-19 lockdowns began in early 2020, everything shut down, including my job. Luckily, my mortgage company was willing to work with me because the entire country was dealing with the crisis. Eventually, I went back to work. I was even offered a higher paying job that summer, which I accepted.
But unbeknownst to me, my body was slowly being attacked on the inside by a rare disease that COVID-19 had triggered. I nearly died in September 2020, when I went to the emergency room and ended up spending almost two months in the intensive care unit (ICU). I was eventually diagnosed with atypical hemolytic uremic syndrome (aHUS).
The time I spent in the ICU meant that I missed two months of work. After being discharged, I had a packed schedule of dialysis three times a week, infusions of Soliris (eculizumab) once a week, and one or two weekly doctor’s appointments. My new medical schedule made it impossible to maintain a job.
When a patient needs dialysis in the U.S., they automatically qualify for Medicare. So for the first time in years, I had healthcare coverage. But I didn’t qualify for any other type of financial assistance.
I couldn’t receive benefits from the federal Supplemental Nutrition Assistance Program due to its work requirements of 20 hours per week. I didn’t qualify for COVID-19 mortgage assistance because my mortgage wasn’t with a federally backed lender. And attempting to qualify for disability benefits can go on for years. I’ve currently been fighting for disability benefits for over two years, to no avail.
My mortgage company worked with me as long as it could, but I ultimately lost my home. I’ll never be able to purchase land and a home at such a low price again. And that makes me mad every time I think about it.
My car had several issues during my medical journey, and it’s currently dead. I also had both of my children’s birthdays and Christmas to worry about after just getting out of the hospital. My dearest friend started a crowd-funding page for me, which thankfully paid for the children’s Christmas and birthdays, and other friends and family helped out, too.
When you have an ultra-rare disease, there aren’t many options for financial assistance. My mortgage was left unpaid, as were my utility bills and other necessities.
Important lessons
Despite these gut-wrenching losses, this entire experience has taught me some lessons about money and employment. I’ll never allow myself to be in a position where one missed week of work can land me in a crisis. That kind of stress can tear apart a healthy person, never mind someone like me who is sick.
And I’ll never allow myself to kill myself for a job. We weren’t born merely to work and die. Yet that’s the pace of life I was living before I got sick — it was work, work, work. What’s the point of working and making all that money if you never have the time to enjoy it?
Lastly, I learned that my little family can survive on much less money than I ever thought we could. I’ve had to cut out a lot of things, but I make it work.
Before getting sick, I was a workaholic. In addition to my full-time job, I was remodeling a home and chasing around two young kids. Slowing down was never an option until it was my only option. And that’s one of the best things that’s come out of this experience — it forced me to slow down, and now I’m always available for my boys.
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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