Sometimes the weight of it all is hard to put into words.
The weight of advocating.
The weight of defending a disability.
The weight of the gathering of proof.
The day in and the day out.
The weights that should be lifted off with grace, one by one.
The weights that could be just a little lighter this time.
What could be the greatest gift of all.
There is a story I think about that explains the struggle of neurodivergent individuals with autism and invisible disabilities. One that is deeply personal. And one that makes sense to share with the people who hold these weights high and carry them through it all.
Thirteen years ago, I was on a train to Mystic, Connecticut. I was on my way to a work conference. I was sitting in the middle row, laughing with work friends, reviewing the conference notes, and snacking on little snacks and Starbucks drinks.
By the time we arrived, it was more than late. We were all hungry and waited for the first-night company arrival dinner to begin. We were waiting in the bar area when I felt a rush of sudden panic. I was hungry, but it felt like more. It was indescribable.
Was I about to pass out? But we had snacked all day. Everyone else seemed okay.
I got through that moment—and many others to come.
Sometimes I would feel a rush of panic before lunch while waiting in a simple restaurant line. Sometimes I had to ask a co-worker to get my lunch. It all started to feel like too much.
I went to the doctor for this panic and was prescribed Xanax for relief. They said I had a lot on my plate: “Take 1–2 as needed per day.”
I struggled over the next few years to figure it out. I struggled through management conferences, meetings, and long commute drives.
I took Xanax before work. I started doing a few minutes of yoga and added an antidepressant for more relief. I tried to get more sleep. I ate healthy, made smoothies at home, and journaled—since I love to write.
I pushed through hard.
I struggled even more.
I ignored myself.
I got mad at myself.
I led meetings with a chair in case the dizziness would overcome me. I pushed hard to be resilient. I had to.
Resilience would get me through it all.
The reward would only come from how hard I pushed.
I was wrong.
The truth is that it never changed. Nothing worked.
This was me—knee-deep in normalized anxiety.
It was years later that I discovered what I have is Reactive Hypoglycemia. A diagnosis. A solid answer to what I was pushing against in an overflowing current.
It all finally made sense. I had all the symptoms. I had some answers.
So, I read and researched. I changed my diet to fit what they said would work. I included protein with every snack. I cut the sugar that was spiking my blood sugar too high and leaving it to drop. I ate every 2–3 hours. I kept my blood sugar stable.
I’m still learning.
I am grateful for fewer moments of reactive hypoglycemic symptoms. They sometimes happen—I am not perfect.
I try to be proactive in taking care of myself. I just feel better now. I can do things without worry in my daily routine.
It is for sure not magic.
It was about treating the root causes of my reactive hypoglycemia first.
It was about treating the core causes.
It was about advocating for my needs.
This is where my story stops short.
Where I choose to stop and reflect.
Where compassion opens doors, opens eyes, and creates open paths.
Jake was expected to push through.
Jake was expected to be resilient.
We were told it would get easier the more he pushes through.
The truth is that all the encouragement and support in the world will not push open a door.
Not when the root of the disability is not addressed first.
Not when the priority is not placed on the nervous system first—in a nervous system disability.
When autism and sensory needs are pushed aside.
When connection is second to expectations.
When the have to’s are stressed more than the needs.
When Jake was in preschool, he qualified for early interventions. They started to come into his preschool to work with him on speech, socialization, and other supports.
Jake was showing some progress. It was working. We were able to notice growth.
Then the tables turned sideways when they requested he attend an early intervention preschool. A bus would pick him up after lunch. He could then get hours of help in a classroom with kids whose needs were in line with his.
It felt wrong—but on the other side, it all made sense.
We felt we had no choice at the time. We had to trust the professionals.
Jake was just four years old.
And this is where things began to go wrong.
It was all too much.
The two preschools.
The two classrooms.
The two sets of teachers.
His behaviors started to escalate.
His potty training went backwards.
Jake had autism and a nervous system disability.
I look back with a new clarity.
When it comes to a disability—a physical diagnosis, any condition which is out of your control without proactive, root-cause, core treatment—there is one cold, hard fact:
If you do not treat the core issue, the current will continue to rise.
No amount of resilience or strength will push through raging waters.
The wrong way will only lead to exhaustion, self-doubt, and missed paths.
Less heavy bricks.
Paths that could have been there all along to guide you.
Find your way.
