Ignorance Is Bliss When It Comes to Abilities I’ve Lost Due to Sarcoidosis

I’m in the middle of training for the TCS New York City Marathon, the largest marathon in the world. I also have pulmonary sarcoidosis.

I have written many times about my love of running, which I discovered at the start of the COVID-19 pandemic. My favorite gyms and studio were closed at the time, and I wanted to keep exercising.

My doctors at Johns Hopkins approved of me running outside as a way to stay active. It had the added benefit of getting me out of my Brooklyn apartment.

From that humble, if not forced, beginning, I have since run four half-marathons (13.1 miles each), more than a dozen 10K races (6.2 miles), and tons of 5K and short 1-mile races. The TCS race Nov. 6 will be my first full marathon.

I can’t ignore the hundreds of miles I’ve run while training. At this point, I’m on my fifth pair of running shoes and my second set of insoles (which work wonders in keeping me injury-free). I run my own race and encourage others to do the same.

Of course, if you’ve read my column before, none of this is especially newsworthy. But I recently discovered a new way to think about running.

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Last month, I had the honor and pleasure of participating in the Foundation for Sarcoidosis Research’s Global Patient Summit, a two-day virtual conference focused on this rare disease. It featured world-class medical professionals (including my doctor) and patients who could provide insight into living with sarcoidosis.

I participated in a panel called “Life Hacks: Unveiling Your Best Life With Sarcoidosis,” which included some truly inspiring people who are also living with the condition. It’s probably no surprise that running came up a few times.

I’ve been diagnosed for almost nine years now, but life with sarcoidosis never stops surprising me. The biggest surprise at the conference was quite specific to me.

To borrow a phrase, I learned that sometimes ignorance truly is bliss.

In preparing for the conference, I had the chance to chat with my fellow patients. Some have issues with their heart or nervous system, which makes it almost impossible to run. This is very tough for those who are former runners.

While nervously and excitedly preparing for my first full marathon, I met patients who had completed over a dozen, along with other impressive physical feats. Most were around my age or older, and before their diagnosis, they were able to perform those feats with relative ease. It was just a natural part of who they were.

Unfortunately, sarcoidosis took that from them. Because of the pressure it puts on the lungs and body, the physical act of running was no longer possible for them. In some cases, they found substitutions that have allowed them to remain active. One of my fellow panelists skis with an oxygen tank on her back. Talk about inspiring!

Even when they could no longer run, they refused to let anyone feel sorry for them and simply adjusted. Still, they knew what they had lost and what was no longer possible with sarcoidosis.

Oddly enough, because I didn’t run like this when I was younger, I have no idea what I’ve lost. And while I typically much prefer to be informed, in this case, ignorance is helpful.

I am ignorant about how fast I “used to be.” My running pace is over 10 minutes per mile, sometimes just under 12 minutes. That is hardly fast, but it’s an accomplishment for someone like me with a chronic lung disease.

I am ignorant of the reality that someone middle-aged is rarely as fast as someone much younger. But because I didn’t start running until 2020, I don’t have the burden of knowing what I used to be.

I am ignorant of the supposed fact that you can’t run with sarcoidosis. I know for sure that it’s tough, and medical professionals have made it clear that my experience isn’t the norm. But, with my doctors’ approval, I started running in earnest and established the habit before I knew it was “impossible.”

Here’s the thing: I’m a big believer in knowledge. I research everything thoroughly, including running. I plan out my runs for the week on Sunday night, including what I’m likely to fuel my body with and often what clothes I’ll wear.

But sometimes, the best way to accomplish something is by not knowing it’s impossible.

Ignorance can truly be bliss.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.