Amie’s Story: Living With Hidden or Invisible Disabilities
When discussing disabilities, it’s disheartening to see that much of the public assumes cerebral palsy is only a physical disability. If a child isn’t using a wheelchair, a white cane, or other assistive devices, many people assume they must not have a disability at all.
While visual cues play a role in recognizing and understanding physical disabilities, they can overshadow another significant disability experience: non-visible disabilities.
Cerebral palsy is a neurological condition that affects motor skills, muscle tone, and posture. It is caused by brain damage or abnormal development before, during, or after birth.
My physical appearance might not fit the typical image of cerebral palsy, which can sometimes lead to people overlooking those of us who don’t use assistive devices.
What Are Invisible Disabilities?
Hidden disabilities are conditions that aren’t immediately obvious but can significantly impact individuals on a daily basis. These disabilities may include chronic pain, cognitive impairments, or neurological disorders.
Because they aren’t visible, people with invisible disabilities often face misunderstanding, stigma, or lack of support.
Here’s an invisible disabilities list often linked with cerebral palsy:
- Chronic pain from muscle stiffness or joint problems
- Speech and communication difficulties
- Learning disabilities
- Seizure disorders (epilepsy or recurring seizures)
- Mental health challenges like anxiety or depression
Unfortunately, there is a lack of understanding of coexisting conditions that come with cerebral palsy.
In fact, adults with non-visible disabilities are typically not supported by the community. Many people focus on more visible issues.
Challenges of Hidden Disabilities
The challenges of non-visible disabilities, also called “silent disabilities,” can feel overwhelming. The daily pain and fatigue many of us go through can be undermined by comments like “You look fine” or “Why are you having another lazy day?”
These comments reflect a lack of understanding and empathy, which can leave some people feeling ignored. Even when they’re not intended as bullying, remarks like these can be deeply discouraging.
It’s important for people to understand the wide range of challenges and symptoms of cerebral palsy. These disabilities don’t exist on their own — they intersect with other parts of a person’s identity and shape their experiences.
For me, living with cerebral palsy and being part of the LGBTQ+ community means facing additional layers of discrimination. Recognizing these overlaps is so important for creating support systems that include everyone and meet real needs.
Tools for Navigating Hidden Disabilities
Navigating life can be challenging for people with hidden disabilities, especially when their needs aren’t immediately visible. Below are several tools I find helpful.
Using the Spoon Theory to Explain Hidden Disabilities
As someone who lives with chronic pain every day, I often turn to Christine Miserandino’s The Spoon Theory to explain my limited energy.
The spoons represent the amount of energy I have for the day, and the number of spoons I start with determines just how much my body will allow me to do. Some days, I have only a few spoons, which may cause me to accomplish less than other days.
This theory highlights the daily struggle of balancing what my body can handle with what it demands.
“The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”
– Christine Miserandino, author of The Spoon Theory
Throughout the day, tasks that may seem simple to others, like doing housework, running errands, commuting, or socializing, can drain a significant amount of my energy.
Each task, regardless of how small, often takes away my spoons and leaves me with less energy for the things I truly enjoy.
During my years of playing soccer, I learned that a single game could consume most of my spoons for the day. I had to listen to my body and pace myself, pushing ahead without overdoing it.
The spoon theory has become a powerful way for me to explain my energy levels and the hidden struggles of living with non visible disabilities, offering insight into a reality many may not fully understand.
Getting Help From the Hidden Disabilities Sunflower
One resource that’s made a difference for many is the Hidden Disabilities Sunflower program.
Introduced in 2016 at Gatwick Airport near London, England, this initiative provides sunflower lanyards to show the wearer may need extra help.
These sunflowers are now recognized worldwide in airports, railways, and other public spaces, helping to promote invisible disability awareness and ensure staff are trained to assist.
As someone living with cerebral palsy, I’ve often struggled in public spaces because my disability isn’t obvious. There have been times when a little extra understanding would have gone a long way.
Programs like the Hidden Disabilities Sunflower make it easier to ask for support without constant explanations. They offer not just help, but dignity, making life a little more manageable for those of us with hidden disabilities.
Increasing Invisible Disability Awareness
All my challenges and each small victory have brought me to one of my passions — raising awareness and supporting others living with an invisible disability.
By sharing my experiences and providing resources, I hope to help others navigate the unique challenges of living with a disability that isn’t immediately visible. Everyone deserves understanding and support.
If your child has cerebral palsy, know that help is available. Contact us at (855) 220-1101 to learn more.
Written by:Amie KroessigAmie Kroessig is a Patient Advocate and Outreach Coordinator for Cerebral Palsy Guide. In her role, she provides resources and support to families and caregivers of children with cerebral palsy to help give them the quality of life they deserve.
