How I Uncloaked My Invisible MS Symptoms

I have lived with multiple sclerosis for 68 years. Long characterized as a snowflake disease, we know that it affects each person differently. But I have learned something else about MS: Not only does it affect each person uniquely, MS can also affect one person very differently and in surprising ways over the longer arc of their disease journey.

Learning to internalize the invisible

Here is how my symptoms have gathered and changed over the years, “invisible” symptoms in particular—and how I have addressed them with family and strangers alike. My earliest memory is of scudding through the hallways on all fours at age eight, because my legs ached. My mother’s response— “It’s just growing pains”—became the first of many labels to explain away such symptoms. When I told the school nurse in third grade that I felt like I was swallowing chunks of blood, I was sent to the principal because they thought I was trying to get out of class and ordered me to stop saying it. When stomach aches followed, I was ordered to stop having those, too. I dutifully complied, internalizing the idea that such symptoms simply could be switched off. But there was more to come.

The year I was ten, the smell of burnt popcorn triggered an intense headache one evening. I had never had a headache before. I lay on the couch with my head in my mother’s lap, having gone inside myself to manage the pain. Nausea, and sensitivity to light and sound soon joined the headache. After starting high school, I would develop these symptoms twice a month. But the summer before eighth grade, I developed pneumonia, and a new symptom soon followed with a different kind of problem.

A momentary failure of muscle

Despite being a natural-born sprinter who enjoyed running relay races as far back as I could remember, I launched into a sprint, only to lose my footing and totally wipe out seconds later. I jumped up quickly, hoping nobody saw me. No one said anything, which created some doubt that it happened at all. Relieved a the possibility, I convinced myself that indeed I had simply imagined a momentary failure of a major muscle group.

The summer I was 21, I developed scarlet fever. The symptoms were gone within 10 days and I returned to what I thought was normal. I drove an ice cream truck that summer at the suggestion of a family friend. One day I spotted her in town and walked in her direction to tell her about it. When I reached her, she asked: “Why are you limping?”

When others see what you cannot

I didn’t know what she was taking about and stridently told her as much. She gave me a silent side look, something you do when you think someone just said something crazy. But to me, what was crazy was that five people who did not know each other had asked me why I was limping. They saw something that I did not. It flipped the script completely.

Just like in sixth grade when my 4-H teacher assessed my bike-riding skills before a cycling trip to the next town. After riding in a straight line while teacher watched, she noted that I was continuously turning the handlebars back and forth to maintain balance and wanted to disqualify me. Desperately wanting to go, I defiantly pitched a fit and she relented. At the back of the pack, and losing more distance as the seconds ticked by, my legs were far too weak to catch up. I turned around and headed for home, not telling anyone what happened.

The quiet habit of adapting

More things happened during high school and beyond, but nothing that raised alarm bells for me or my parents or teachers. My symptoms were all easily explained away and most had not been observable. It was easy to be in denial that anything was seriously wrong, even years after my first full exacerbation decades later.

Nothing prepared me for what happened when the Social Security Administration’s representative called me after I filed a disability claim. We spoke for a few minutes before she asked to talk to my mother, with whom I had lived for a number of years. Shortly before that, mom asked me what I wanted her to say about my MS. “Just be honest, ma,” I advised. When
the rep asked if she saw the disabilities I had discussed, mom told her no, she did not see any of it. It dawned on me to what degree I had quickly adapted to any physical changes. I wouldn’t use a cane until months later. That was in 2009.

Standing up for the invisible

After my mother died in 2014, I met with my siblings to discuss arrangements. I was the last to arrive, having become spent after showering. My hands felt weak and numb. At mealtime, everybody filled their plates sat down to eat. I breathed audibly from the effort as I moved around, but nobody acknowledged it. My weak hands fumbled with something on my plate. “You’re making that harder than it is,” my sister told me. “I’m not making it hard, it IS hard,” I shot back.

A year later, a stranger called to me outdoors. “Do you need the cane just for balance?” Ah, a teaching moment! And the best kind, where a stranger makes a point of asking about what they are seeing, an invitation to be taught. “Weakness, spasticity, and foot drop,” I patiently explained. She nodded, and moved on.

Well, I thought, MY work is done—except, it never is. Think about it. Most chronic conditions have invisible symptoms. Can you see pain? Clogged arteries? Depression? Cancer? Deafness? No. Therefore, the onus is on us to shed light on the invisibility of disease.