Chronic Disease Awareness Day 2026 🎗

Today is Chronic Disease Awareness Day. 🎗

This is the second year that I've known about this day... after discovering it while struggling to come to terms with my new reality since my endometriosis diagnosis.  A year ago, I was still in the deep depths of discovery and pain- and hoping that my upcoming excision surgery would be the answer to my prayers.  And it was... to a point.

This Chronic Disease Awareness Day, I'm acknowledging that I didn't know what the hell I was even talking about a year ago.  A chronic disease is just that... chronic.  There isn't a magic surgery that will take it all away.  And while I feel loads better now that my insides aren't all attached to each other, the endometriosis still exists.

Sure, my symptoms are much better.  But unfortunately, a few of the most annoying ones that I was looking forward to getting rid of, are the ones I still have.  Exhaustion and being nauseous seem to be my new MO.  And to be frank, it's annoying as hell.  

I'm so tired of being tired.  I never used to be someone who could simply fall asleep anytime and anywhere.  Now, that's all that I seem to want to do.  No matter how much I sleep, I'm still tired.  And not "I didn't get enough sleep" tired... more like "I feel like I've been run over by a bus and sick for a week" tired.  People don't really 'get' that part.  It doesn't ever go away... it's just... there.  Always.

And the nausea... it's still plaguing me.  Thankfully it's mostly just when I'm hungry now.  But it's still really annoying.  I thought it would go away after surgery- but apparently not.

My life looks different now.  I'm still me and I still do the things I want to do.  I just have a lot more of an internal dialog and planning phases than I did before.  And I have to pace myself more... I can't do all the things in one day.  Or I'll pay for it severely the next day.

Endometriosis has made planning things like Disneyland and Walt Disney World hit a bit differently too.  Thankfully I have still fully enjoyed my trips to both parks this year.  But what you don't see in the perfect Instagram photos is that I was in a wheelchair for a good portion of it.  I walked a 5K RunDisney race, and spent a good part of the rest of the trip in a wheelchair.  It's a major paradox, but I'm learning to go with the flow.

Which brings me to our current adventure... London.  I have to admit, I've had a lot of anxiety leading up to this trip.  Sure, I've mostly had excitement, but the dread has been there too.  Europe has a lot of walking and it's not wheelchair friendly.  It might have been almost 20 years since I went, but I remember that.  I can't just fall back on Plan B and ride around in a wheelchair here... so Eliot's family has had to go out of the way to not overbook any one day.  Eliot and I are planning to be happy with whatever it is that we're able to do.  And if I need a break, then we'll take it in our hotel room.  

Still, it kills me to feel so needy... but I keep telling myself that this is just what my life looks like right now.  The people who really love me and care for me will want to make sure that I'm ok.  They wouldn't want me to drive myself into the ground in exhaustion.  And they wouldn't want me to be silently suffering in pain.

Today, I now fully understand why someone created Chronic Disease Awareness Day... because if you've never experienced a chronic disease, you probably won't get it.

Others don't understand what I'm going through.  I try to explain things, but I'm afraid that people will think that I'm just complaining, or that I'm weak, or that I want attention.  All the things you read in people's careless comments to strangers on the internet.  It would kill me to think that people I care about might think those sorts of things about me... so I've withdrawn a lot socially.  I'm not the social butterfly, group outing organizer anymore.  Nowadays, I mostly just stay home and keep to myself.  And it's lonely.

But in this phase, I've also learned a lot about myself.  I'm stronger than I thought I was.  I have more willpower than I thought.  I can do hard things.  I've learned to listen to my body more.  And most importantly, I've learned that my 40+ years of living in my own body far outweighs any medical professionals dismissals towards my experience.

Endometriosis is not something that I would wish on anyone.  But it's now a part of my story and it's a part of who I am.  So today, I'm sending love to all of the other chronic disease fighters with a shout out to my fellow Endometriosis Warriors. 💖 

There are still some days when I have to remind myself that "you are stronger than your pain," but then I remember how far I've already come.  We’ve got this. 💛🎗🌻