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5 money lessons I learned after having a stroke

Key takeaways

  • A medical emergency can happen no matter your age and how healthy you seem, so it’s important to prepare for the unexpected.
  • Understand what your health insurance covers, especially in-network vs. out-of-network coverage and your out-of-pocket maximum, or the most you’ll have to pay in a year.
  • The 2022 federal No Surprises Act calls for in-network rates from out-of-network providers in an emergency. Check your state’s laws for rules and other consumer protections.
  • Short-term and long-term disability insurance, which usually replaces a percentage of your income, can help you cover expenses while you aren’t working due to illness or injury.

What happened

I consider myself lucky.

In July 2023, I was at the gym when I collapsed, became incoherent, then collapsed again. The gym called 911, and an ambulance took me to 2 hospitals. The second determined a previously undiagnosed brain aneurysm—basically a bulge in a weakened blood vessel—had burst, and the hemorrhage was exerting dangerous pressure on my brain. About half of patients die from such an injury, and about 2/3 suffer from brain damage as a result, according to the Brain Aneurysm Foundation.1

There was no brain activity for hours. A neurosurgeon coiled the aneurysm, and another one installed a shunt in my skull to drain excess fluid. Doctors told my emergency contacts, college friends who had rushed to the ER, to urge my worried family in Chicago to fly to New York as soon as possible and be prepared for any eventuality. Because there were no more flights that night, they made it to New York the next day.

A week later, I had another stroke. (You’re more susceptible to a stroke if you’ve already had one.) Doctors showed my family a photo of my brain, which was a mass of all white—an indication of potential brain damage.

I only know any of this because my family started a blog to keep people up to date so they wouldn’t have to repeat my story. Though I had woken up in the days following the rupture, the first thing I remember is seeing my sister in early August and noticing my partially shaved head (courtesy of the brain surgery) in a window and asking her: What happened?!

I’ve since read the blog, talked to people who were by my side, read epic text chains and emails, and looked at unrecognizable photos and videos. Surreal doesn’t begin to describe it. If I had a dollar for every time I’ve heard that I was really lucky ...

In the months since, I’ve learned a lot about the health care system and insurance, plus the power of understanding workplace benefits and other consumer protections. Here are 5 key lessons that could help you prepare for the unexpected.

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1. Understand health care consumer protections

The last thing you want to think about while fighting for your life is if you can pay the bills. The federal No Surprises Act, which went into effect on January 1, 2022, restricts surprise health care bills and allows you to pay in-network rates in the event of an emergency and you are taken to a (usually more expensive) out-of-network provider; or if you are treated by an out-of-network provider at an in-network hospital or ambulatory surgical center. This law supplements, not replaces, state law as applicable to fully insured health plans, so check if your plan is fully insured and whether your state insurance laws provide any other protections.

If I’d had to pay the sticker price for my out-of-network neurosurgeon to coil my aneurysm, it would have cost $260,000. But the law said the out-of-network provider had to charge in-network rates because I sought care in an emergency setting. And once I paid my out-of-pocket maximum—the most I have to pay in a year, after meeting my deductible, before insurance covers 100% of my medical bills based on my policy—I didn’t owe any more. (Consult your policy for your out-of-pocket-maximum, which can depend on plan type and family status.) If your provider erroneously bills you an out-of-network rate, dispute the charge based on surprise medical billing protection and check on the legality of balance billing in your state.

Along the way, I also learned that the Affordable Care Act (ACA) banned lifetime limits. Before the ACA became law, insurers could stop paying after your medical bills reached a certain amount over your lifetime, say, $1-$2 million. This was a huge relief, as I was racking up medical bills left and right. In addition to brain surgery, I spent time in the ICU, the stroke unit, and inpatient rehab in New York, followed by 12 weeks at an outpatient facility in Chicago (among many other follow-up appointments, treatments, and tests).

2. Consider disability insurance

I try to prepare for the worst, so I’ve always had disability insurance, which pays you a percentage of your income while you’re on leave from work and comes in 2 forms: short term (STD) for periods of usually less than a year, and long term (LTD), which can last all the way to retirement if you meet certain criteria.

According to the Bureau of Labor Statistics, just 41% of private industry nonunion workers have access to STD plans and 35% to LTD plans.2 And yet these policies can provide important access to income while you’re not working to cover essential expenses such as rent, food, and utilities—not to mention expenses related to your illness or injury. My company paid for STD, and they offered LTD coverage for a low premium that was deducted from my paycheck.

Once you’re ready to take advantage of a policy, the insurer will likely ask for a lot of supporting paperwork, from questionnaires to medical records to old insurance claims to prove that you didn’t ignore warning signs.

If you want to sign up, understand eligibility rules, if and how it affects any bonuses you might get, and how payments are taxed. You aren’t supposed to earn income while on disability and must report it if you do, in which case your benefits may be reduced or terminated, and you might be required to pay back an amount equal to the overpayment of disability benefits you received.

3. Know the benefits and limitations of FMLA

Under certain scenarios, the Family and Medical Leave Act, or FMLA, allows you unpaid leave without the threat of losing your job for 12 weeks. This is when disability insurance and emergency savings can help cover your bills. The law applies to workers who were employed for a certain amount of time (usually 12 months) at a job with at least 50 employees. Check for other requirements and with your benefits or HR department for employer rules, like if you have to use PTO before unpaid leave kicks in. The American Disabilities Act, state laws, and your employer policies also may provide medical and disability protections to be aware of.

4. Understand crowdfunding

Two friends asked if I wanted to start a crowdfunding campaign, which is an increasingly popular way for people to pay their medical bills. I declined, as I had a health savings account (HSA) on top of health and disability insurance plus emergency savings to pay for out-of-pocket medical expenses.

Still, a study recently published in the American Journal of Public Health stated that the number of medical campaigns on one crowdfunding site had increased 25-fold between 2011 to 2020.3 If this is something you’d like to pursue, consult a tax pro to find out whether any money received could be taxed as income. Because donors are giving to a personal fundraiser and not a qualified charity or other type of nonprofit, that donation is not tax-deductible but considered a personal gift as long as they are not receiving goods or services in return.

5. Appoint a financial proxy

My family was incredible in so many ways beyond flying from halfway across the country to make sure I was never alone for months. My sister scheduled my appointments and made sure doctors were in-network, while one brother acted as my financial proxy. That means he had access to my accounts and could enable autopay to make sure my bills were being paid. He tracked medical bills on patient portals, and I added him as a trusted contact to financial accounts when possible. Even if you’re young and healthy, it’s not a bad idea to be prepared with an estate plan, which can include a health care proxy and power of attorney.

Where I am today

It has been a long recovery road—from needing a walker, seeing double, and scoring 8% on a cognitive test to being cleared to run, drive, and eventually work and scoring 100% on the same test 3 months later. Who knows what normal is anymore, but my medical team has been pleased with my progress. Plus, the brain will continue to heal. I have seen the best of humanity with most people showing up and being patient, compassionate, and supportive as I’ve navigated disability.

Sometimes all I had to do was ask and a company would accommodate me, like my credit card company reversing a late fee or a dentist’s office waiving a no-show fee because I was unconscious at the time. I didn’t even have to ask the hairdresser who shaved the rest of my head for half his usual fee. When the athleticwear companies found out the EMTs cut their brand’s workout clothes off me in the ambulance, they replaced them.

People in my life have changed major parts of theirs as a result of hearing about my strokes, from signing up for disability and life insurance, to drawing up an estate plan, to updating emergency contacts. When I met a new neighbor—a doctor who had heard my story—he asked, “Do you know how lucky you are?” Even after everything that’s happened—countless falls while I learned to regain my balance, getting tired after walking a lap at the park when I used to run, thinking George W. Bush was the current president, seeing how this affected my family—my answer to him and anyone who asks never changes: “I do.”

Riza Cruz is a writer for Smart Money at Fidelity Investments. She lives in New York.

Consider a health savings account (HSA)

With an HSA, you can pay for qualified medical expenses in a tax-advantaged way.

More to explore

1. "Statistics and facts: Devastation caused by aneurysm," Brain Aneurysm Foundation, https://www.bafound.org/statistics-and-facts/ 2. "Employee Benefits in the United States," Bureau of Labor Statistics, September 21, 2023. 3. Nora Kenworthy, PhD, and Mark Igra, MA, "Medical Crowdfunding and Disparities in Health Care Access in the United States, 2016–2020," American Journal of Public Health, February 23, 2022.

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