Living with chronic illness is expensive. It costs us emotionally, physically, and financially. But talking about money while disabled? That can feel even harder. It certainly has been challenging for me. That’s why I was thrilled to read financial advice from disability advocate Kira Stoops earlier this year. In her Substack called Imperfect Working Order, Kira described ways to ask for discounts on anything that costs money, from hospital bills to hand creams. I immediately subscribed, recognizing how important this conversation is in the long COVID space. We need to talk about money, openly and honestly. As Kira taught me, we actually need to talk openly and honestly about a lot.
In this episode of Long Covid, MD, I speak with Kira Stoops about what it means to not only survive, but thrive, while managing a long-term illness. She shares candid stories about missed financial opportunities, emotional roadblocks, and the very real stigma that keeps many of us from asking for the help we need.
Stigma Around Disability
The stigma around disability is all too familiar to me. I had always worn my independence and self-sufficiency as a badge of honor. Quite literally, my hospital ID badge marked me as someone who helps others in times of crisis. That identity was shaken by long COVID, which forced me to confront the fact that I was now in crisis and in need of help myself. In 2021, when I told the head of my anesthesia department that I could no longer work, I was overcome with embarrassment. Embarrassment returned throughout the year as I faced a series of difficult firsts: my first time using a wheelchair in public, my first visit to the emergency room as a patient, and my first time applying for financial disability benefits.
I’ve worked through my feelings of shame by following some of the same advice Kira shares in our conversation:
- acknowledging bias around disability
- resisting perfectionist tendencies
- processing the fear of appearing vulnerable in a world that continues to feel unsafe.
Advice for long COVID from a Chronic Illness Veteran
Kira’s insights are hard-won. She has lived with ME/CFS for nearly a decade and she admits she’s made mistakes, including mistakes around money. “Money is a massive tool for our survival,” Kira says, and encourages people who are newly disabled by long COVID to be open to accepting financial help that may be available.
Sadly, disability and financial instability are closely linked, and at least in America, medical debt can leave individuals and families financially insecure. Kira offers ways to reduce or even eliminate hospital bills, even if the process isn’t immediately clear. “They don’t tell you this stuff,” she says.
This is About More Than Just Money
Kira’s approach to money is open, honest, and grounded in reality, and it allowed us to talk about touchy subjects beyond money.
In our conversation we discuss:
- The true cost of being sick — and how easily financial safety nets fall apart
- How internalized shame and perfectionism stop us from seeking support
- Tips for hospital bill forgiveness, disability benefits, and grants
- Adapting our careers to our health needs, including an explanation of the microbusiness model
- Her journey toward accepting mobility aids (and how they changed her life)
- The transformative power of honest friendships and patient-built community
This conversation is about more than just money. It’s about how we rebuild lives after illness reshapes everything. It’s about how we move through shame, perfectionism, and silence — and into connection, relief, and even joy.
If you’ve ever hesitated to ask for help, this episode is for you.
If you’ve ever felt ashamed for using benefits you qualify for, or have even paid for, this episode is for you. Listen to the full episode on your favorite player, and let me know what you think!