New York in an age of long COVID

’m a CEO and founder of a successful small business in New York, and I have long COVID.

I’m far from alone; thousands of people, many of them young and previously healthy, are quietly battling this illness on two fronts: personal (How much energy will I have today? What will my symptoms be?) and public: convincing a long list of well-meaning people who until recently didn’t believe our ailments existed.

They are very real, and it’s time they are accommodated meaningfully.

Since my business is dedicated to smart urban planning, I think a lot about how we make people’s daily lives better. As the city “gets back to normal,” recognizing the diverse experiences of those living with disabilities is more important than ever.

I got sick early, before reliable tests, when New York was still the epicenter. In the midst of my battle with COVID, I transitioned my company to remote work, trying to keep the ship afloat as planning projects across the Eastern seaboard were put on hold, and with them, a majority of our business.

Days turned into weeks into months. Spring and summer 2020 were our leanest times; despite having diversified and saved, we were not ready to go from growth mode to full-scale economic meltdown.

Few were.

As my health deteriorated, I could make it to the kitchen table or couch to work a few hours a day. I called clients, applied for small business assistance and made contingency plans, all the while facing crippling fatigue. I counseled clients whose businesses faced the same market uncertainties mine did, and cried with friends who lost loved ones or were sick themselves.

I pushed through, unless I couldn’t. Planning was near impossible, since I never knew when I woke up if it would be a “push through” day or the opposite. The unpredictability was terrible.

After being told for months I was making it up, a doctor confirmed my symptoms were part of a pattern. Long COVID. At last.

Still, I refused to acknowledge, as the months wore on, that I had a long-term illness, what doctors now say is a disability — both because of the permanence it implied and fear of negative consequences. But amidst all the talk of getting back to normal, it feels worth it to put disability in bold lettering.

Life has gotten easier since those darkest days, but it’s important to remember that there are potentially thousands of New Yorkers whose baseline health has permanently or semi-permanently changed. It’s time that we have a full conversation about and with the people living with this disease.

We must make thoughtful allowances to ensure that people with long COVID can keep contributing — that workers are accommodated and the small businesses managed by people with this disease don’t shutter as a result of our inability to do so, and that we do better as a city to plan for accessibility.

How?

First, kindness matters. Physical illness and disabilities are not necessarily visible; we must do what we can to support each other interpersonally.

But personal understanding is only a small piece. It’s not enough to be nice to those unable to get around. Policies must be formed and infrastructure built.

My heart skyrockets when I climb stairs; I look for benches to take breaks when I need them. Standing on a moving subway is a non-starter, as is carrying anything heavier than my tote bag.

For decades, the city and state have invested stop-and-start in disability infrastructure like elevators on subways; we must do better, taking the time when we beautify stations to make them accessible as well. Other worthwhile investments in master plans: shade trees and benches.

Invest in research. We are a city of problem solvers, with some of the most august research hospitals in the world. It’s time for every level of government to put them to work. The money will attract tech and medical talent while solving an existential problem for our city and the world.

And for those of us living with long COVID, it’s important to not let this disease define us. We can and will still do great things.

As I manage my recovery, I’ve also steered my company out of a crisis and provided support to friends and colleagues. I’m looking to the future. I am still the CEO of a growing business. While I may need to show up differently in some situations, I can and do still show up meaningfully. You can too.

Staying silent is a disservice. People with long-term illness and disabilities are no less capable than those without. As the city reopens, it’s time to seriously incorporate this disease into the way we live and operate. We can all do our part.

of Karp