It took 27 years for me to be diagnosed with a disease most doctors have never even heard of.
And I was told just last year…
“Just exercise more.”
Today is Dercum’s Disease Awareness Day (April 4th).
It took 27 years for me to be diagnosed.
Twenty. Seven. Years.
That’s not okay.
And that’s exactly why awareness matters.
Dercum’s Disease is rare, poorly understood, and often dismissed.
Many of us go years—sometimes decades—being misdiagnosed or told nothing is wrong.
I’m sharing this not just for me, but for anyone still searching for answers.
Dercum’s doesn’t usually show up alone.
It can exist alongside other connective tissue disorders like Lipedema and Ehlers-Danlos Syndrome (EDS)—both of which I also have.
This disease affects my daily life in ways most people don’t see.
Pain is unpredictable, and triggered by things most people wouldn’t think twice about:
• Stress
• Injury
• Illness (like COVID)
• Surgery
• Even sitting too long on a hard surface
• Imbalances in electrolytes and minerals
• For me certain plant foods
My fascia tightens, my body stiffens, and it can trigger what I can only describe as a “full body migraine.”
And then there are the lumps or lipomas, tumors…
Dercum’s causes painful fatty growths throughout the body… but that clinical description doesn’t come close to what it actually feels like.
These aren’t just “lumps.”
They ache.
They burn.
They throb.
Sometimes they feel like bruises you can’t see.
Sometimes they feel like glass under the skin.
If you’ve seen me in person, you’ve seen what this disease has done.
My arms and legs are no longer smooth—they’ve been reshaped by these painful masses.
And what you can see… is only part of it.
There are many more hidden.
Every single one of them can hurt.
For 27 years, I lived with pain without understanding why.
So if there were times I seemed distant, canceled plans, or wasn’t the friend or coworker I wanted to be…
please know it wasn’t because I didn’t care.
It was because I was in pain—and didn’t have answers yet.
Most people have never heard of Dercum’s – even doctors.
Just last year, while trying to explain my pain to a doctor, I was told—with a smirk—
“Do you know what the cure is? Exercise. Just get on a bike for an hour a day.”
I have a beautiful road bike sitting in my garage – I would LOVE to ride it.
But I can’t – It’s too painful. When I said that, I was brushed off.
That moment stuck with me. Because it wasn’t just dismissive—it was a reminder of how invisible this disease still is.
Despite all of this… I fight.
I fight to function.
I fight to be present for my family.
I fight to build a life that works within the limits of this body.
For the past 25 years, I’ve searched for ways to manage this pain.
Most of what helps me—
like the Carnivore diet, Osteopathic Manual Therapy, other therapies— isn’t covered by insurance.
But they are the reason I am still here.
Because there was a time—not that long ago—
when the pain was so overwhelming…
I didn’t want to live anymore.
Today, I’m sharing my story for awareness.
Because no one should have to wait 27 years for answers.
No one should be dismissed.
No one should be told their pain isn’t real.
If you’ve never heard of Dercum’s Disease before today—
that’s exactly why this matters.
🧡
For years, I knew something wasn’t right in my body.
Even after my Lipedema diagnosis, it didn’t explain everything I was feeling.
I still had:
- Pain that didn’t make sense
- Fat that didn’t behave like Lipedema—or normal fat
- A body that felt different from everyone else’s, no matter how hard I tried to do all the “right” things
And even after two years on the Carnivore diet, I still had chronic fatigue and stiffness that didn’t fully resolve.
But every time I went looking for answers, I was told the same thing:
“You’re fine on paper.”
“Everything looks normal.”
“Just exercise more.”
“Get on a bike for an hour a day—that’s the cure.”
They were wrong…
When You Know Something Is Wrong—But No One Believes You
There is something incredibly isolating about living in a body that doesn’t feel normal…
while being told over and over again that it is.
You start to question yourself.
Maybe I’m not trying hard enough.
Maybe I just need more discipline.
Maybe this is normal and I’m just not handling it well.
But deep down, you know.
You know this isn’t how your body is supposed to feel.
It’s Not Just Weight
One of the most frustrating parts of Dercum’s Disease is how easily it gets dismissed.
On the outside, it can look like weight gain.
But it’s not.
This is:
- Painful tissue
- Lipomas that ache, burn, and throb
- Areas that feel inflamed and hypersensitive
- A constant awareness of your body—because it hurts
Pain flares and fatigue can become so debilitating that at times, I didn’t want to live anymore.
And no amount of “just exercise more” fixes that.
The Comments That Stay With You
Some of the hardest moments weren’t even the pain.
They were the comments.
The dismissiveness.
The assumptions.
The oversimplified advice for something that is anything but simple.
Being told:
“Everything looks normal” when it doesn’t feel normal
“Just lose weight” as if that explains everything
“Eat less, exercise more” as if pain isn’t part of the equation
These aren’t just unhelpful—they’re damaging.
Because they delay answers.
They create doubt.
And they make people feel unseen in their own bodies.
What I Eventually Realized
For a long time, I was searching for a diagnosis.
But what I didn’t realize was that I was also missing something bigger:
An understanding of what was actually happening inside my body.
Because this wasn’t just about fat.
It was about how everything in my body was functioning together.
The Missing Piece No One Talked About
As I started connecting the dots, two things kept coming up over and over again:
👉 Fascia
👉 The lymphatic system
Fascia is the connective tissue that runs through your entire body—
wrapping muscles, surrounding organs, and connecting everything together.
When I had pain flares—especially on one side—it didn’t feel random.
It felt connected.
Like everything was pulling through one continuous line…
from the plantar fasciitis in my feet to the migraines in my head.
And the lymphatic system?
It’s responsible for moving waste, fluid, and inflammation out of the body.
But unlike the circulatory system, it doesn’t have a pump.
It relies on movement… and proper tissue function.
When I learned about the glymphatic system—the brain’s waste-clearing system—
things started to make even more sense.
Why toxins affect me so severely.
Why my symptoms weren’t just local—but systemic.
Why This Matters for Dercum’s
Looking back, this is what I believe now:
What if the pain isn’t just in the fat?
What if it’s also:
- Stagnation in the lymphatic system
- Restriction in the fascia
- Pressure building in tissues that can’t drain or move properly
- Toxins not being cleared effectively—especially from the brain
What if the body isn’t just storing…
but struggling to clear, circulate, and communicate?
That would explain so much.
The pressure.
The pain.
The patterns.
Finally Putting a Name to It
Learning about Dercum’s Disease changed everything.
Not because it fixed everything overnight—
but because it validated what I had known all along:
Something was different.
Something was real.
I wasn’t imagining it.
Why Awareness Matters
Dercum’s is still widely misunderstood and not well studied.
Many people—patients and doctors alike—have never even heard of it.
And even fewer understand the role that fascia and lymphatics may play.
That’s why awareness matters.
Because there are people out there right now:
Questioning their bodies
Being dismissed
Trying harder and harder with no answers
And they deserve better.
If This Sounds Like You
If you’ve ever felt like your body didn’t match what you were being told…
If you’ve ever been dismissed when you knew something was wrong…
You are not alone.
🧡 Dercum’s Awareness
April 4th is Dercum’s Awareness Day.
I’m updating my story to bring awareness to my diagnosis—and how I manage it.
What I’ll Be Sharing Next
This is just the beginning of my story.
Because even after my Lipedema diagnosis…
something still didn’t add up.
And the pain I was experiencing?
It had a pattern no one could explain.
I’ll be sharing more in my next post and how I’ve managed all the pain. Being strict Carnivore helped, but I found more therapies that have been helping.
