When Policy Moves Forward — and Patients Are Still Left Behind

clicks4acause
Dec 20, 2025
4 min read

The Reality of HHS Changes, Chronic Lyme, and Losing Everything Anyway

There was a headline last week that gave many in the Lyme community a brief exhale.

Federal guidance now explicitly references Lyme disease in connection with Chronic Care Management (CCM) — a Medicare benefit designed for people with ongoing, complex medical needs.

For some, it sounded like progress.

For others, it felt like recognition.

For many of us, it landed somewhere far more complicated.

Because while policy may be shifting on paper, millions of patients remain stranded in real life — unable to work, unable to qualify as “disabled,” and unable to access the care that keeps them alive.

I am one of them.

My Story: Losing Everything, Slowly

I didn’t lose my life to Lyme all at once.

I lost it in layers.

Careers dissolve quietly when you can’t sustain full-time work.

Savings disappear when insurance stops covering “non-approved” care.

Relationships strain when illness doesn’t fit neat timelines.

I am on Pennsylvania state health care because I cannot work full-time — yet I am not considered disabled, because Lyme is still not recognized that way by the state.

My fourth confirmed Lyme infection was last November.

I am still healing.

I pay out of pocket for most of my care — labs that truly matter, genetics, supplements, functional medicine — are NOT covered through approved PA healthcare, because the system does not account for bodies like mine.

And I am not alone.

There is a growing population of people who have not “failed” the workforce — we were medically displaced from it.

What the HHS Changes Actually Mean

Let’s be clear, because clarity matters more than hope headlines.

The recent HHS/CMS guidance:

Applies directly to Medicare, not state Medicaid programs
Does not automatically expand coverage for people on state health care
Does not recognize Lyme as a qualifying disability
Does not reimburse most integrative or functional care

So no — this change does not suddenly help those of us on Pennsylvania Medical Assistance or similar programs across the country. PA is a leader in confirmed cases yet the system fails to treat us.

But it does matter.

Because for the first time, Lyme disease is being named inside federal chronic-care language — not as anxiety, not as residual symptoms, not as something resolved and dismissed.

It acknowledges what patients have lived for decades:

Lyme can be ongoing, complex, relapsing, and life-altering.

That recognition creates precedent.

And precedent is how systems eventually move — even when they drag people behind them in the process.

The People Left Behind

There is a quiet group no policy announcement ever highlights:

People too sick to work full-time
Too functional to qualify for disability
Too complex for standard insurance
Too exhausted to keep fighting appeals

We don’t show up in workforce numbers.

We don’t fit diagnostic boxes.

We don’t recover on schedule.

Instead, we adapt.

We downsize.

We sell.

We borrow.

We pay out of pocket.

We lose — again and again — while still choosing to live.

The system treats this as an individual failure.

It is not.

It is a structural failure.

Why This Moment Still Matters

Even if it doesn’t help me today, this change matters because:

It validates the chronic nature of Lyme at a federal level
It strengthens advocacy for state Medicaid reform
It supports future disability appeals and legal challenges
It gives clinicians language to document complexity
It chips away at a narrative that has harmed patients for decades

This is not the finish line.

It is a crack in a wall that should never have been built.

What Patients Need — Not Headlines

Patients like me don’t need symbolic recognition alone.

We need:

Coverage that reflects medical reality
Disability standards that account for relapsing illness
Protection from financial collapse due to chronic infection
Access to care before people lose everything

We need systems that understand that survival is not the same as recovery.

Still Here. Still Losing. Still Speaking.

I have lost careers.

I have lost stability.

I have lost safety nets I didn’t know could disappear so completely.

And still — I speak.

Because silence is what allowed this to go on for decades.

If you are reading this and recognize yourself here, know this:

You did not imagine your illness.

You did not fail your body.

You did not choose this.

We were left behind — and that truth deserves to be told.

Not for sympathy.

For Change

Why I’m Asking for Support

I want to be clear about something that often gets misunderstood.

All of my care is out of pocket.

I no longer return to the traditional medical system because I was dismissed, gaslit, and harmed there.

That experience left me with medical PTSD — and I am not alone in that.

I am now a practitioner, healing as I support others.

I have access to top labs, advanced protocols, and cutting-edge clinical insight.

What I don’t have is the ability to pay cash endlessly for my own healing.

That paradox is rarely acknowledged:

Knowing what your body needs — and not having the financial means to access it.

I continue to advocate, educate, write, and show up for others while still navigating my own recovery, without insurance coverage, without system support, and without the safety net people assume self employed practitioners have.

This advocacy is unpaid.

My healing is unfunded.

And the cost is ongoing.

How You Can Support This Work (and My Healing)

If this article resonated with you —

if you’ve been dismissed, displaced from work, or traumatized by a system that failed to protect you —

please know this:

Supporting this work directly supports both advocacy and survival.

Donations help cover: