Series Part 4 of 4: Not All Disabilities Are Visible

In This Series: 1: Chronic Illness | 2: Dynamic Disabilities | 3: Outdoor Access | 4: A Day In The Life

Part 4: A Day in the Life: Living with Dynamic Disability

By: Chelsea Matherly, Spoons of Salt

Living with a Dynamic Disability

I am the Founder and President/CEO of Spoons of Salt Nonprofit Organization (SOS), a nonprofit dedicated to supporting individuals with chronic illnesses/invisible disabilities. I see many people struggle to feel satisfaction in their lives after a chronic illness diagnosis. We believe that support, understanding, and pacing yourself are crucial for those looking to better navigate the daily unpredictability of their health.

What is a Dynamic Disability?

When most people think of disability, they often think about conditions that are visible and constant. However, many of us live with what is known as a dynamic disability.

A dynamic disability is a health condition that changes in severity, symptoms, and impact over time. Unlike a static disability, my level of function, pain, and fatigue may change dramatically not just week to week, but moment to moment.

As we discussed in previous essays, many chronic and invisible illnesses fall under an umbrella, including Dysautonomia/POTS, Ehlers-Danlos Syndrome (hEDS), Fibromyalgia, and other autonomic/autoimmune diseases.

Snapshot of Living with Dynamic Disability

On some days, I am able to manage a full workday, lead a board meeting, and even join one of our accessible outdoor socials. On other days, I might have to stay home, become dizzy, am unable to regulate my heart rate, and manage my overwhelming fatigue and pain. The daily unpredictability of dynamic disabilities can be a challenge.

Here is a look at a typical, yet unpredictable, day in my life.

“Spoon Count Begins”

At 7:00 AM, the “Spoon Count Begins”. I start my day by taking inventory. I mentally “count my spoons” (a metaphor for daily energy units I can allot to myself). Did I sleep enough? Is my pain level a dull throb or a sharp spike? This helps me decide how I must budget my energy. Getting dressed, might cost a healthy person one “spoon”. Yet for me, it might cost three or four spoons, depending on how I feel.

Learn More:
National Center on Health, Physical Activity, and Disability (NCHPAD)
Spoon Theory: A New Way to Think About Your Daily Energy
Web: nchpad.org/resources/spoon-theory-a-new-way-to-think-about-your-daily-energy/

“Navigating the World”

At 8:30 AM comes the “Navigating the World” part of my day. Dropping my kids off at school or going to the grocery can feel like a marathon. Although I may look young and healthy, I am battling severe dizziness (Dysautonomia) and joint instability (hEDS), (along with other diagnoses). I must decide – do I risk a fall and maybe injury or use the accessible parking spot and face a possible confrontation from a stranger who believes I’m “too young” or “look fine.” On those days when I feel well enough to get out and do things, I still live with pain of three or four on the pain scale.

“Work and Cognitive Load”

At 10:00 AM, I go to work. This is the “Work and Cognitive Load” part of my day. As President/CEO of Spoons of Salt, my work is mentally demanding, and I fight “brain fog” and fatigue that accompany many invisible illnesses. I plan to complete critical tasks during my best hours and rely on the incredible support of my team to help with the load. The goal is to evenly spread the amount of spoons I give myself throughout the day without going over. If I go over my allotment, I will most definitely notice an increase in my symptoms the next day.

“Flare-up” or “Crash”

“Flare-ups” or “Crashes” are unavoidable, caused by something as simple as standing too long, a change in the weather, or a moment of stress. Around 2:00 PM, my body demands rest. I must take a break, lying down to manage symptoms. If I do not lie down, I feel nauseous, and I often fall asleep. When this happens, I must reschedule a meeting or delay an email, while the feeling of guilt is due to being unproductive or that I am a “burden.”

“Spending Time with Family/Friends”

At 5:00 PM, I “Spend time with my Family/Friends” from the community we have created. In the evening, I may connect with our community through one of our wellness programs, like Gentle Yoga with Jen, or a support group. These moments with Spoons of Salt members, who truly get it, are lifesaving. We share salty snacks and drinks—these little adaptations make our lives easier.

“Prepare for Tomorrow”

My day ends around 9:00 PM – not with relaxation, but with preparation. Sorting medications, arranging heating pads, mobility aids, a final self-assessment, and preparing for tomorrow. There is no guarantee that tomorrow will be a “good day,” but there is hope, fueled by the strength of our community.

Spoons of Salt

The work we do at Spoons of Salt is more than support; it’s about understanding the reality of dynamic disabilities and fighting for a world that accommodates our changing needs. By understanding that disability is not always visible or constant, we can build a truly compassionate and accessible world, one spoonful of salt at a time.

In This Series: Not All Disabilities Are Visible (4 parts)

Authors: Sarah Rupp and Chelsea Matherly, Spoons of Salt (SpoonsOfSalt.org)
Source: Southeast ADA Center (ADASoutheast.org)