🎵 “You Don’t Know How It Feels” – EOA What People Say (And Why It’s Wrong)(Tom Petty)

July 2025

Let’s talk about this.

Because if you’re in this…

👉 You’ve heard it all

The comments.

The comparisons.

The “trying to help” statements.

And most of the time?

👉 They make it worse

💬 Disclaimer

I’m not a therapist—just a caregiver sharing real-life experience. This is not advice, just perspective from someone living it. Take what helps, leave what doesn’t.

🧠 First – People Aren’t Trying to Be Hurtful

Let’s give them that.

They are:

• Trying to relate

• Trying to comfort

• Trying to say something

But…

👉 They don’t understand this disease

💥 And That’s the Problem

Because what they SEE is:

• Someone who can still talk

• Someone who can still walk

• Someone who “looks fine”

👉 What they don’t see is everything else

🚫 THINGS PEOPLE SAY (AND WHY THEY MISS)

😬 “He’s so lucky to retire early… you get all this time together”

What they think:

👉 Freedom

👉 More time

👉 Less stress

💔 What it actually is:

• Forced life change

• Loss of identity

• Loss of income

• Loss of future plans

👉 This isn’t vacation

👉 This is survival mode

👉 You are seeing a snapshot

We are living the full movie

🤦‍♀️ “At least it’s not…”

Fill in the blank:

• Cancer

• ALS/Parkingson's/MS

• Any Another disease/illness

💔 Reality:

👉 There is no “at least” here

This is:

• Progressive

• Unpredictable

• Emotionally devastating

👉 And it takes everything slowly

🙄 “My grandma had that”

💔 What they mean:

👉 “I understand”

💔 What you hear:

👉 “You don’t”

Because: (we know)

• Early onset is different

• Being a young spouse is different

• Having a healthy strong physical person who is confused and lost is devasting

• Living it daily is different

• Exposing kids/teens to it daily is near impossible to manage outcomes

👉 This is not the same story

🧠 WHAT THEY DON’T SEE

Let’s be real.

They don’t see:

• You managing everything

• You adjusting every conversation

• You carrying the mental load

• You losing your partner in real time

👉 They see an hour

👉 You live 24/7

💭 WHAT IT ACTUALLY FEELS LIKE

It feels like:

• Grief… while they’re still here

• Parenting your spouse

• Parenting alone

• Being alone… in a relationship

• Becoming head of household, all life decisions, everything

• Constant decision-making

• Constant DOUBT (am I doing this right?)

👉 And doing it quietly

💡 HOW YOU RESPOND (WITHOUT LOSING IT)

You don’t always have the energy to educate people.

So here are options:

✔️ Option 1: Let It Go

👉 “Yeah… it’s been a lot”

(And move on)

✔️ Option 2: Light Reality Check

👉 “It’s a little different than what people expect”

✔️ Option 3: Honest (When You Have Energy)

👉 “What you see is a good moment… it’s not like that all the time”

✔️ Option 4: Protect Your Peace

👉 Change the subject

👉 Limit conversations

👉 Set boundaries

💛 THE TRUTH

People don’t know…

👉 Because they haven’t lived it

And honestly?

👉 You didn’t either before this

🎵 Why This Song Fits

“You don’t know how it feels…”

Exactly.

👉 And unless you’re in it…

👉 You really don’t

💭 Final Thought

You don’t need:

👉 Validation from people who don’t understand

You need:

👉 Support from people who do

💬 Disclaimer

I’m not a doctor, lawyer, therapist, or expert—just a wife trying to figure this out one day at a time. Everything shared here is based on our experience and things that have helped us along the way. Take what helps, leave what doesn’t, and always check with professionals when needed.

I also use AI to help clean up my writing, organize thoughts, and pull together resources because honestly… caregiver brains are tired too. If something here helps another family feel less alone, then it’s worth sharing.

"You Don't Know" Tom Petty