Disclaimer, this post was written before the passing of One Big Beautiful Bill.

LLet’s be real: living with chronic illness in the U.S. is expensive as hell. And I don’t just mean emotionally—though yes, the grief, the frustration, and the burnout are real AF. I mean literally. Being sick costs money. Lots of it.

And while the government and healthcare system keep gaslighting us with “access to care” soundbites, many of us are drowning in bills, burnout, and BS.

So let’s pull back the curtain. Let’s get loud about what it really costs to live in a body that doesn’t fit the capitalist, ableist mold of 24/7 productivity.

Let’s Start with the Receipts

Every year, the U.S. drops nearly $4.9 trillion on healthcare—and 90% of that spending goes toward chronic and mental health conditions. That’s about $14,500 per person, but don’t be fooled: this doesn’t mean we’re all getting gold-star care. It means the system profits from keeping us just sick enough to survive, not thrive.

Now zoom in on the individual level:

People living with chronic illness spend over $6,000 more per year than those without. That includes appointments, meds, labs, ER visits—the whole insurance-denied circus.
Out-of-pocket costs? Usually $1,400+ annually, especially once you factor in the “extras” insurance won’t cover—mobility aids, supplements, therapy, heating pads, or your 10th heated blanket (plus a backup one for when it dies mid-flare).
Lost income? On average, folks with chronic conditions lose $9,000+ each year due to missed work, reduced hours, or forced job exits.

Because while your body says rest, capitalism screams “no sick days!” Spoiler: your body wins. Eventually. And the cost is steep.

A Personal Breakdown

I live in a remote location, which means I have to fly to see specialists. A round-trip ticket? $800. Lodging? A few hundred more, unless I’m lucky enough to crash with friends.

Recently, I had my first visit with a doctor who specializes in Ehlers-Danlos Syndrome. That appointment alone cost $500. My diagnosis came with a packet of “suggested next steps” that totaled:

$700/month in supplements
$70/month in prescriptions
$2,000+ in one-time mobility and care tools

None of that—including the specialist visit—was covered by insurance. This is just one of the confirmed diagnosis I have.

It’s Not Just Bills—It’s Burnout

Living with chronic illness is a full-time job—and we don’t get PTO. We’re managing symptoms, attending endless appointments, dealing with waitlists, advocating for ourselves in underfunded systems, and trying to stay afloat mentally and emotionally.

Chronic illness steals time. It steals energy. It often steals opportunities—because most jobs aren’t built to support disabled or chronically ill workers.

And let’s talk about that dirty word: productivity. Chronic illness “costs” the economy an estimated $200 billion per yearin lost productivity. That’s not our fault. That’s a system that refuses to care for the people inside it.

Emergency Room Roulette

Ever had to go to the ER because your doctor’s booked three months out and urgent care says “lol, no”? You’re not alone.

60% of ER visits are linked to chronic conditions. In 2017 alone, that racked up $8.3 billion in hospital costs. So yes, we’re showing up—but rarely by choice. We show up when it’s urgent, when it’s terrifying, when there’s no other option left.

So What Can You Do With This Information?

You can talk about it. You can name it. You can demand better.

We tell the truth about the cost of chronic illness—not just the dollars, but the dreams deferred, the plans changed, the rest we never wanted but had to take.

And we build systems—community-based, care-centered, anti-capitalist systems—that remind us:

💥 Healing is radical
💥 Rest is resistance
💥 Softness is not weakness
💥 Thriving in a sick system is a form of rebellion

This isn’t about pity. It’s about power. It’s about truth. It’s about building something better.

Resources to Aid in Your Journey

Medical & Insurance Support

1. Medicaid
Low-income families and people with disabilities. May cover transportation and home care.

2. Medicare & Savings Programs
For people 65+ or under 65 with a disability.
Pro tip: Apply for Extra Help under Medicare Part D to cut prescription costs.

3. Healthcare.gov Subsidies
If you don’t qualify for Medicaid/Medicare, use the Marketplace. You may get reduced premiums based on income.

Prescription Assistance

4. GoodRx / SingleCare / CostPlus Drugs
Huge discounts on prescriptions—even without insurance.
(I use GoodRx religiously.)

5. Patient Assistance Programs (PAPs)
Offered by pharmaceutical companies (Pfizer, J&J, etc.). May cover full cost if you meet income limits.

6. NeedyMeds.org
Massive searchable database of assistance programs for meds, supplies, and more.

Financial Help & Grants

7. Chronic Illness Nonprofits
National MS Society, HealthWell Foundation, The Assistance Fund, NORD, CancerCare—many offer direct financial aid or grants.

8. SSDI or SSI
SSDI is based on work history; SSI is income-based.
Pro tip: Most people are denied at first. Appeal. Appeal. Appeal.

9. 211 or Local Resource Hotlines
Find help with food, rent, transportation, utilities, and more.

Transportation & Accessibility

10. Non-Emergency Medical Transportation (NEMT)
Medicaid may reimburse or cover rides to medical appointments.

11. ABLE Accounts
Tax-free savings for people with disabilities that won’t mess with your Medicaid or SSI.

Extra Tips & DIY Strategy

12. FSA or HSA
If offered through work, use pre-tax money to pay for medical expenses.

13. Sliding Scale Clinics
Ask. Many doctors and therapists quietly offer reduced rates.

14. Negotiate Your Bills
Call the hospital or provider’s financial aid office. You can often get a reduced bill—or even forgiveness.

15. Crowdfunding (if you have to)
GoFundMe isn’t sustainable, but sometimes it helps. Have a clear plan, update supporters, and don’t be afraid to ask for help.

Final Truth?

This system isn’t built for us—but we still live, love, and thrive within it.

If you're chronically ill, disabled, or navigating complex care: You are not a burden. You are not alone. You deserve support that honors your whole self—not just your productivity.

Share this post with someone who needs to hear it.
Drop a comment: What’s one chronic illness cost no one warned you about?

And if you’re lucky enough to be healthy—read this, learn from it, and show up for the chronically ill folks in your life.

We’re not broken.
We’re building something new.

Stitch by stitch.
Rest by rest.
I see you. I’m with you. Just keep stitching.

The Real Cost of Chronic Illness: Let’s Talk About It