I have an invisible disability. I wish people were more compassionate sometimes.

In World/Middle East
2023-01-20 11:50:00Z
By INSIDER

Lindsay Karp headshot

It took me 13 years to get diagnosed with multiple sclerosis.
My body can do much more now that I have a treatment, but climbing stairs can still be hard.
Just because my disability is not visible, it doesn't mean that I don't struggle.

It was a Saturday at the Empire State Building. My family was excited to climb the iconic high-rise in New York City, the first of numerous activities on our list for the weekend. I couldn't wait to see my boys in awe of the city below, the rooftops of buildings beneath our chins and cars, tiny specks in the distance. My husband and I planned to savor the view from the 86th floor as a newly married couple 13 years ago.

But upon our arrival, the line twisted and wrapped around the building like a snake.

I wasn't yet diagnosed with multiple sclerosis - because it took far too long to receive an answer for what was wrong - but my legs were already moderately impaired. Standing and walking posed a quandary, one that couldn't be fought through. We left to find a place to rest and hoped to return one day.

I tried again

When that day came, I'd been on MS treatment for four years, my symptoms had calmed, and my body was capable of so much more than it was the last time we arrived at this steel-framed skyscraper. We rode a few elevators until we reached the floor with a large, daunting flight of stairs. I'd already stood for close to an hour, pushed through muscle fatigue, and mentally built up enough courage, hoping to make it to the observatory deck. As I stood before this stairwell, I knew this one flight could be a deal breaker. Climbing them could ruin my chances of making it to the 86th floor with my family.

"Is there another way up?" I asked the assistant nicely but with concern. People were shuffling by, pushing their shoulders against mine, as I mentally worked through my dilemma. There must be an elevator.

Visitors in wheelchairs have the right to climb the Empire State Building to the top - as do those with a cane or crutches or any type of visible walking difficulty. But people with invisible disabilities, like mine, are expected to explain their needs, convince their audience, and plead for accommodations.

"You're going to climb the stairs just like everyone else," he said.

He spoke firmly, assuming my question was merely a complaint. Those surrounding me looked toward me with judging eyes as blood rushed to my cheeks like a river. They'd heard his words as clearly as I did. But they didn't know my truth - that I appear fully capable but am not. His response was not an answer to my question. They were words of ignorance. They signified a huge gap in the understanding of disability. I looked at those stairs, clenched my fists, and climbed them - just like everyone else.

When I reached the top, I found a place to rest, hoping I could still move onward and upward toward my goal.

I didn't have the energy to explain my MS

I should have responded. I usually do. But the airportlike atmosphere, with people spilling into rooms like Tetris pieces, forced me into emergency mode as someone with a walking disability. I didn't have the energy to plead, to explain, or to convince. And I shouldn't have to. My brain was focusing all efforts on carrying me the full distance.

I did make it to the 86th floor of the Empire State Building. For someone like me, it was a huge accomplishment. But these wins never come without unnecessary struggle imparted on me by the ignorance of others. I'm exhausted from explaining myself, from having to convince the world that my physical disability is an honest one. There may be nothing visible about my disability, yet it sits upon my limbs, consumes my every move, and worsens the further I push.

As I anxiously peered toward the top of the flight of stairs, I was hoping to hear the words, "There is an elevator should you need one." I did need one. The attendant should have simply answered my question without the need for my personal medical history. It's all anyone with an invisible disability hopes for as they navigate this complicated world.

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I have an invisible disability. I wish people were more compassionate sometimes.

I tried again

I didn't have the energy to explain my MS

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