The Dual Diagnosis Diaries: 💜 I Haven’t Even Left the House Yet

Dear Diary,

There are days when going out feels like an accomplishment.

And then there are days when getting ready to go out is the accomplishment.

Before chronic illness, getting ready was just…getting ready.

Take a shower. Do my hair. Get dressed. Grab my purse. Leave.

Now?

I can make it through the shower and already feel like I need a recovery period.

And I haven’t even left the house yet.

People usually see the finished product. They see me dressed, hair done, purse in hand, maybe even looking halfway put together.

What they don’t see is everything that happened before I made it through the front door.

Because when you live with Crohn’s Disease and Myasthenia Gravis, getting ready isn’t always as simple as shower, get dressed, and go.

Sometimes it feels like I’ve completed an entire shift before I’ve even clocked in.

🚿 First Challenge: The Shower

Most people take a shower to get ready for the day.

Sometimes I need to recover from taking the shower.

Standing takes energy.

Washing my hair takes energy.

Holding my arms up to wash, dry, or style my hair takes energy.

Drying off takes energy.

And MG is somewhere in the background keeping score like:

Oh, you wanted to use those muscles for something ELSE today? Interesting. 😂

There are times when I get out of the shower and sit down wrapped in a towel because my body has apparently decided that Phase One of Getting Ready has concluded and an intermission is required.

Meanwhile, Crohn’s has its own agenda.

Because nothing says productive morning like getting out of the shower only to immediately head back to the bathroom.

Again.

🚽 Crohn’s Would Like to Add Something

Crohn’s does not care about reservations.

Crohn’s does not care what time the movie starts.

Crohn’s does not care that everyone is waiting.

And Crohn’s most certainly does not care that I JUST WENT TO THE BATHROOM.

I can plan my outfit.

I can plan what time I need to leave.

I can give myself extra time.

But Crohn’s?

Crohn’s does not participate in planning meetings.

So now I’m trying to finish getting ready while simultaneously calculating:

When was the last bathroom trip?

Can I make it through the drive?

Where is the bathroom when I get there?

Do I need to go one more time before leaving?

And perhaps the most dangerous thought of all:

“I think my stomach has finally settled down.”

Because apparently saying that—or even thinking it too confidently—is how you summon Crohn’s. 😂

💪 Meanwhile, MG Has Entered the Chat

While Crohn’s is controlling the bathroom schedule, MG is negotiating with my muscles.

Getting dressed can become tiring.

Doing my hair can become tiring.

Walking back and forth around the house collecting everything I forgot can become tiring.

And if weakness or shortness of breath decides to join the party, something as ordinary as getting ready can suddenly feel like a workout.

That’s the part people don’t always understand about chronic illness:

The energy required to arrive somewhere begins long before we actually arrive.

By the time you see me, I may have already spent a significant portion of what I had available for the entire day.

And here’s the frustrating part:

I still have to actually do the thing I got ready for.

Some days I have enough energy to get ready.

Some days I have enough energy to enjoy myself.

And some days my body apparently forgets those two activities are supposed to come out of the same day’s energy budget.

Excuse me, roommates.

We discussed this.

I have plans. 😂

👗 But I REALLY Want to Go

And this is the part I wish more people understood.

Sometimes when someone with chronic illness cancels plans, people assume we changed our minds.

We didn’t really want to go.

We’re unreliable.

We should have known earlier.

But sometimes?

We tried.

I may have showered.

Rested.

Started getting dressed.

Rested again.

Made several trips to the bathroom.

Finished my hair.

Sat down because MG demanded another intermission.

Got back up.

Found my shoes.

Went back to the bathroom.

Grabbed my purse.

And then stood there wondering:

Can I actually do this?

Not:

Do I want to go?

I already know the answer to that.

I want to go.

The question is whether my body is going to let me.

Because wanting to participate and being physically able to participate are two completely different things.

💭 The Questions Nobody Hears

And then comes another kind of exhaustion.

The emotional kind.

If I cancel, will they understand?

Will they think I’m making excuses?

Will they stop inviting me?

Are they tired of hearing that I don’t feel well?

Am I disappointing everyone again?

That part hurts.

Because chronic illness doesn’t eliminate the desire to live.

I still want dinner with friends.

I still want celebrations.

I still want spontaneous adventures.

I still want vacations, family gatherings, outings, laughter, and memories.

I still want my life.

Sometimes my body just requires a much longer negotiation before allowing me to participate in it.

And occasionally, after all that negotiating, the answer is still no.

Not because I didn’t want to go.

Not because I didn’t try.

But because sometimes my body makes the final decision.

💜 Please Don’t Mistake My Absence for Not Caring

If I cancel, please understand that I may have spent hours trying not to cancel.

If I arrive late, there may have been a battle you knew nothing about before I walked through the door.

If I show up looking completely fine, please remember that looking fine doesn’t tell you how much energy it took to get there.

And if I have to leave early, it doesn’t mean I wasn’t enjoying myself.

Sometimes I’ve simply used everything I had available.

Sometimes my body sends the roommates to collect me. 😂

There are days I win the negotiation.

There are days Crohn’s wins.

There are days MG wins.

And occasionally they form an alliance—which is extremely rude and absolutely not permitted under the terms of their lease.

But I keep trying.

Because chronic illness may change how I participate in life, but it hasn’t changed the fact that I still want to participate.

So if I finally walk through that door, just know something:

You may be seeing the beginning of my outing.

But for me?

Getting there may have already been half the adventure.

And sometimes…

Getting there was the victory.

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🎵 Music Playing…

“The Climb” — Miley Cyrus

Because sometimes the biggest obstacle isn’t the destination.

It’s everything my body makes me climb over just to get there.

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💭 Reflection Corner

Chronic illness has changed my definition of effort.

Things I once did without thinking—showering, getting dressed, doing my hair, walking around the house gathering my things—can now require planning, pacing, and recovery.

It has also taught me that effort isn’t always visible.

Someone can see me walk through the door without knowing what it took to get there.

Someone can see an empty chair without knowing how hard I tried to fill it.

And perhaps that’s what I wish people understood most:

My presence doesn’t mean getting there was easy.
My absence doesn’t mean I didn’t try.

Sometimes I make it out the door but arrive with considerably less energy than I started with.

Sometimes I have enough energy to get ready or enough energy to enjoy the outing—but my body forgot those were supposed to come from the same day’s budget.

And sometimes, despite desperately wanting to go, I have to choose what my body needs over what I had planned.

None of those things mean I’ve stopped wanting to live my life.

They simply mean I’m learning how to live it in a body whose limits can change without asking permission.

And maybe that’s something worth remembering the next time someone with chronic illness arrives late, leaves early, changes plans, or doesn’t make it at all:

There may have been an entire journey before the journey you were expecting them to take.

“Sometimes showing up isn’t a small thing. Sometimes showing up is the victory.”

💜 For my fellow chronic illness warriors: What does “getting ready” actually look like for you on a difficult day? What do you wish the people in your life understood about the effort it sometimes takes just to show up?

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Living with one autoimmune disease is challenging. Living with two means learning to navigate a body that doesn’t always follow the itinerary. Welcome to The Dual Diagnosis Diaries, where I share the realities of living with Crohn’s Disease and Myasthenia Gravis—with honesty, advocacy, education, and enough humor to keep my two very opinionated roommates in check.

Kia Lorice
Founder • Author • Advocate • Future Wellness Coach
💜 The Dual Diagnosis Diaries
thedualdiagnosisdiaries.com