When Showing Up Hurts: Leading With a Hidden Disability
Inadequate.
“Hidden Disability,” also known as an “Invisible Disability,” refers to disabilities that aren’t always visible to the naked eye.
Some examples include:
Physical: Chronic Pain, Autoimmune Diseases, EDS, MS, Endometriosis, Migraines, Epilepsy, Chronic Fatigue, POTS, Diabetes, etc.
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Mental: Anxiety Disorders, Depression, Bipolar Disorder, ADHD, ASD, PTSD, Learning Disabilities, OCD, Schizophrenia, etc.
It’s not a kind word. It’s not a fair word. Yet it’s a word that floats around in my head all too often. It shows up on others' faces, and it whispers between the lines of conversation.
My hidden disabilities can be mentally, physically, emotionally, and spiritually draining - marked by a lack of understanding, both external & internal ableism, and ignorance.
I felt compelled to write this particular blog post for several reasons:
First, the people I serve every day are facing their own battles. An attitude of kindness, grace, and empathy goes a long way - for them and me.
Second, I feel the weight of systemic barriers, and I want to shed light on their impact. Personal biases and societal structures affect people in ways we can’t always see. It’s a personal responsibility to find time to listen, educate, and advocate for change.
Finally, I want to be vulnerable in a way I haven’t been before. I hope these words build a foundation for my readers to treat others with compassion, to see beyond the surface, and recognize the struggles that may remain hidden.
Peeling Back the Layers. What You Don’t See….
The Mental Toll: I asked a close friend to share with me some core traits that define my character (thanks friend!). She chose: driven, courageous, and accountable.
The problem? Mental energy is your ability to focus on one thing at a time, to have clarity, to limit distractions - it’s one of the most essential components of overall well-being. However, I can NOT:
I can’t focus on one thing at a time when my chest feels so tight it’s hard to breathe.
I can’t gain mental clarity when I’m worried about test results or the next medical curveball.
I can’t stay free of distractions when my mind is racing on multiple tacks, all with conductors pulling me in different directions.
I can’t always be counted on when my mental health is under siege or when my heart rate spikes & my blood pressure plummets. In those moments, I have to lean on others - and trust that they’ll be there, offering empathy and support, no strings attached.
The Physical Toll: Physical health is a gift. It’s something we often take for granted, but it intersects so deeply with mental & emotional well-being. Good physical health means nourishing your body, resting well, and moving freely.
But here’s the problem…
Those nourishing meals? Now they cause pain and discomfort. Now, life is about navigating a new landscape of “safe” foods, a process that is chaotic and anxiety-inducing.
That rest? Now, it’s about lying awake at night months before a medical appointment, fixated on the unknown & unpredictable.
Beloved physical activities? The mind says “yes”, but the body just doesn’t want to cooperate.
The Emotional Toll: When I’m living outside my values, the joy drains away. I feel disengaged, defeated, and like a burden to others. Without mental or physical energy, my drive disappears. The courage I normally bring to my staff & clients? It’s overshadowed by the courage it takes to get through the day.
The Spiritual Toll: More recently, I took a spiritual gifts assessment to better align my gifts with my life. Mercy and faith are constants that guide me, but the one that resonated most deeply was my desire to guide, strengthen, and care for others.
But when I’m forced to choose between caring for myself and caring for others, it uproots the foundations of my identity. I can serve others when I’m the one in need of help.
There’s so much unspoken guilt & shame that runs through my mind: “What will they think?”, “Am I not enough?”, “Can I really do this?”. And that’s the toll you can’t always see.
These looks live rent-free in my head. And suddenly, it gets easier to ask - maybe they’re right? The internal ableism kicks into high gear, and the whispers between the lines grow louder:
“I should be able to do this.”
“I’m just making excuses.”
“If I were stronger or tried harder, I wouldn’t need these accommodations.”
“Maybe I can’t do this.”
“I fell short”
These - LIES - flood my head, and suddenly I stop giving myself the compassion I freely give to others.
The Weight of Perception
Let’s talk about the looks:
The “what is wrong with you?” stare
The patronizing check-in
The look of “this is inconvenient”
The “you’re the problem” body language
The “you’re making this up” or “you’re exaggerating this for your benefit” eyes
When the disability isn’t “enough”, it becomes a problem.
“When you live in a society that tells you that your true self is wrong, when you fear judgement, you learn to hide it.”
The Day I Couldn’t “Push Through”
Recently, I had an episode at work that I couldn’t hide.
I woke up that morning, feeling just a little off, recovering from a head cold, and made the conscious effort to “push through”.
For those of you who don’t know, POTS or “Postural Orthostatic Tachycardia Syndrome” is an unpredictable condition that affects daily living in big and small ways. This condition affects everyone differently, so I encourage you to check out the link from the Cleveland Clinic for more information.
Here’s what this means for me:
Dizziness when standing up
Seeing “dancing lights” when I move too quickly
Migraines
Extreme fatigue
Shakiness
Heart Palpitations
Chronic GI problems
Brain fog
Excessive sweating (honestly, this one is the least impactful, but also my least favorite)
I am fortunate that how my body interacts with POTS isn’t completely debilitating. I can still show up -most days - and do the work I love. But this isn’t true for everyone with this condition. Others experience daily, debilitating symptoms that make it nearly impossible to work, go to school, or be independent. From firsthand experience, I lost my independence for 3 months after a convulsive episode, and the impact on my mental health was overwhelming. These struggles often go unseen, overlooked, or misunderstood; we’re often late diagnosed and receive blanket recommendations rather than comprehensive and personalized care. No one should have to fight alone for the help that they need.
This is the selfie I took during my POTS episode. With an ice pack under my neck, my feet elevated, and my team reminding me to “take deep breaths,” I captured this moment as a way to make the best out of the fear & uncertainty. It’s a photo I come back to, reminding myself that this wasn’t weakness - it was necessary rest. 💜
When I say I made the conscious effort to “push through”, I mean: I thought I had control. I thought it was just another “okay, but symptomatic” day.
The truth is, there are so many days like this - days when my mind feels “offline”, days where I sacrifice energy and time to manage my symptoms to lead, support, and be there for others.
And let me just say this: I am so grateful for the people who don’t reinforce societies ableism. For the people who show up with genuine concern, compassion, and empathy.
I arrived at work that day and made it through two meetings without a single symptom flare. But then it hit me like a bag of bricks. I couldn’t process what was happening - only that I felt scared. Before I felt the weight of any of my symptoms, I felt the urgent need to find somewhere to cry. My body was yelling at me: “Something is wrong”.
I rushed, disoriented, in search of an empty room to cry in - but every space was occupied. That was my sign that I couldn’t do this alone; I needed others’ help.
My team showed up for me in an overwhelming way. They shut down the voice in my head that said, “You should be able to do this”. They spoke truth to me about where my limits were that day. They comforted me. They drew on my strengths to remind me that it’s okay to take care of myself, even when that means letting others help. They even indulged in my favorite coping mechanism - humor (shoutout to my RBT who cracked the joke: “well that’s not bear-y nice!” when I yelled at my bear-decorated compression socks for not doing their job).
“A lot of disabilities are invisible - your reaction to them is not. ”
The reaction of others when the reality of a hidden disability hits - that’s the cornerstone of whether the person affected can thrive or fail in their environment.
What I’m Learning
Although I talk a LOT with my team on putting themselves first, it’s hard! But putting myself first isn’t selfish. It’s the most selfless thing I can do. Because when I have the energy, the right supports, and the right environment to thrive, my clients and my staff thrive too.
Boundaries are essential for protecting my energy and sustainability. I don’t need to give time, energy, or effort to the “looks”, to the whispers, because these aren’t true. And I don’t owe those people my time.
Grace is a two-way street: the compassion I model for others is a gift I also deserve.
My body’s limits are real, not excuses, and not failures.
A Call to Kindness
To anyone this resonated with - you are not alone. You deserve to give yourself kindness & grace.
To colleagues, supervisors, and team members: Remember that what’s hidden is often heavier and deeper than you can imagine. Approach every situation, every performance concern, and every situation with the utmost compassion.
To everyone: Your worth is not defined by the days you can’t bring your all.
Closing Reflection
As I reflect on my journey, I’ve realized that the hardest part of navigating a hidden disability isn’t the disability itself. It’s the weight of expectation, the silent judgement, and the word “should”.
What I’m learning is that by sharing stories with others - through vulnerability & honesty - a bridge is created to deeper connection, compassion, and understanding.
By sharing my story, I hope I’ve given a voice to those who feel unseen, who fight invisible battles every day, and who wonder if they’re “enough” (You are. Always.)
Let’s commit to show up for each other when things get messy, raw & real. Because no one should feel inadequate. No one should fight alone.
Thank you for being here, for listening, and for your willingness to grow together ☺️.
For information on self-reporting to the BACB - follow the link below:
https://www.bacb.com/ethics-information/reporting-to-ethics-department/self-reporting/
*Disclaimer: The views expressed in this blog are my own (Functionally Speaking ABA) and do not reflect the views of UNMC
