how2notdieblog

Before I had the language to describe what was actually going on.

There’s a specific kind of grief that comes with looking back on your younger years after finally receiving answers about your health.

Sometimes I find myself thinking about friendships I had during my late college and post-college years, especially between 2017 and 2021, and wishing I could explain to the version of myself back then what I know now.

At the time, I was pursuing a professional career with Disney. Everything was career-focused for me. The networking events. The professional development courses. The one-on-ones. The meet-and-greets.

At the end of the day, I had no energy left for most social activities, and I began believing I truly was just bad at maintaining friendships.

I constantly backed out of plans. I struggled to commit to social activities. I would desperately want to go somewhere, only to feel physically incapable once the time actually came.

I carried so much shame over it.

I thought maybe I was lazy, unreliable, selfish, flaky, or secretly just not as good of a friend as everyone else seemed to be.

One particular friend group loved very high-energy plans. Constant movement. Theme park adventures. Long nights. Social outings that required enormous amounts of physical and emotional energy. Music festivals, happy hours, you name it.

They often questioned why I never seemed motivated to join them, especially when they could see I still had the energy to spend time with another group of friends, which often consisted of simply listening to music together.

At the time, I didn’t know how to explain the difference because I didn’t understand it myself.

Looking back now, I realize something important:

I felt safe enough with that group to opt out… I thought I was. I thought it was obvious how exhausting those plans were and that staying in to listen to music was a normal alternative for complete exhaustion.

Until eventually, the questions started:

“Why don’t you care to hang out with us?”
“Why do you always cancel?”
“Why can’t we do exciting things when we’re together?”
“Why can you do things with them but not us?”
“Why have you become such a bore around us?”

And honestly, I understand why it may have been confusing from the outside. They worked the same jobs as me. They weren’t struggling to (what I referred to as) overcommit to plans. I didn’t get it. 

And when I tried to explain that I was exhausted and couldn’t fully explain why, there was rarely understanding.

What nobody realized, even including me, was that those two social environments required completely different levels of exertion from my body.

Listening to music with friends in a calm environment was restorative. Predictable. Low demand.

Maybe we’d cook a meal together if we got hungry.

Those moments allowed me to connect with people without pushing my body past its limits.

The other plans often required me to override every signal my body was trying to send me. Seven to ten roller coaster rides. Forced conversations with people I didn’t know. Long walks around Universal Studios after spending an entire workday essentially doing the same thing at Disney.

I know now that what I was experiencing was post-exertional malaise.

I know now that constantly pushing through that exhaustion wasn’t normal, and it certainly wasn’t helping me.

I know now that spending days recovering from seemingly simple activities wasn’t me being dramatic or “an introverted extrovert.” My body was struggling in ways I did not yet have language for.

I was, in every sense of the word, drained.

And though I wanted connection, I couldn’t connect in the ways they preferred.

Learning about ME/CFS and post-viral illness reframed so many memories for me.

And if I could talk to my younger self, even from just a few years ago, I’d tell her this:

You are not failing at being a person.

You are absolutely smashing it.

You are not lazy.
You are not weak.
You are not a bad friend.
You are not impossible to love because you’re tired.

Your body is simply asking for help in the only ways it knows how, and oftentimes that looks like opting out of plans or laying low.

It’s going to take time before someone finally explains what’s happening to you.

It’s going to be a long road before you fully understand your energy limits, your symptoms, your pain, and your exhaustion. There will be grief in that process.

But there is also hope.

You are going to meet people who understand.

You are going to find physicians and specialists who validate your experience instead of dismissing it.

You are going to discover tools, supports, treatments, braces, compression garments, physical therapy approaches, and pacing strategies that help you function more safely within your body instead of constantly fighting against it.

You’re going to start a medication (cromolyn sodium) that makes life feel worth living again.

You are going to find a career that allows you to contribute meaningfully without demanding that you destroy yourself in the process.

You are going to meet people all around the world navigating chronic illness and rare disease who make you feel less alone.

You are going to find your tribe.

And one day, all of the confusion, shame, misunderstandings, and self-blame will finally begin to make sense.

Not because the journey becomes easy, but because you finally understand that your body was never trying to betray you.

It was trying to tell you all along that you needed better pacing and better support.

It was trying to protect you.