"General Confusion" - A Universal Long Covid Identity Crisis

Reflections on Season 2 Episode 9 of A Friend for the Long Haul - A Long Covid Podcast featuring Dr. David Putrino

I’ve been struggling to make space to write here, even though I desperately want to write more. My brain needs it and my heart needs it. I miss it. But I will fully admit that post-covid neurocognitive impacts - even almost 5 years later, have fully knocked my confidence, which probably sounds ridiculous from someone who puts out a podcast weekly. But writing - writing is different. At least, it is for me.

I decided a good way to get myself back in the habit is to start doing a reflective post about each episode of my podcast, A Friend for the Long Haul. What better week to start that than the week that I’m joined by Dr. David Putrino?

You may not know who Dr. Putrino is - and if you don’t, it’s probably because you’re lucky enough not to have to know who he is. You can learn a lot more about him and his work in this piece by The Sick Times about the opening of the new Cohen Center for Recovery from Complex Chronic Illnesses at Mt. Sinai, which he leads:

https://thesicktimes.org/2024/10/15/new-long-covid-and-complex-disease-center-at-mount-sinai-set-to-be-a-leader-in-research-clinical-care/

At the end of every episode of the podcast, I ask my guests the same three questions, and I change those questions every season. This season, the questions are:

1. How has having long covid/chronic illness impacted your sense of identity or self-worth?

2. If your long covid had a theme song, what would it be?

3. What are your hopes for the future - either personally, or within the long covid space?

I never thought Dr. Putrino would actually join me for a conversation. This podcast is a baby. I started it on April 1st, 2024 - my 4 year ronaversary. I don’t have a huge following on social media. I don’t have a ton of reach. But a few friends have been encouraging me to be a little more bold with it. I’m releasing a couple of episodes for the holidays, and I sent a DM to the Putrino Lab Instagram like, “hi….I’m doing this holiday stuff…would anyone be willing to do a short message to say happy holidays…” and got a message back saying here’s Dr. Putrino’s email address - he’s happy to help however he can.

I flipped out.

I emailed him asking whether he’d be willing to record a short message and he replied saying sure, “I'd be happy to do an episode if you think people would want to hear from me!”

If I think people would want to hear from him. Ok.

Going into recording, I really didn’t want this to be another episode where everyone asks him to review their MyChart and tell us exactly when and if there will be a cure. A Friend for the Long Haul focuses on people and their stories, so I wanted to give him a chance to be a person, not the guy we’re pinning all our hopes on. And one of the biggest takeaways I had, aside from the fact that he’s just genuinely interested in helping, was his answer to question 1 - slightly altered since he doesn’t have long covid - where I asked how *gestures broadly* has impacted his sense of self and identity. Here’s an excerpt of the transcript:

“Me: I tend to ask people who've been sick, like, how does it impact your sense of self or identity? But how has working in this space impacted you in that way?

Dr. Putrino: Yeah, it's such an interesting, it has created somewhat of an identity crisis, you know, in that like my entire career up until, you know, 2020, has been, I'm the brain computer interface guy.

I'm the, you know, 3D printed prosthetics guy. I'm, you know, I'm the sort of like, you know, the sports performance guy. I, you know, I run around and I play with tech and I, you know, do all these things. And now suddenly I'm just the long COVID guy, you know, like that.”

That’s exactly how I feel now. I’m just the long covid girl. Family and friends say it’s all I talk about. I’m working with my therapist to try to figure out who I am outside of it. What do I like now? What music do I like? How do I want to dress? How have my values shifted? What do I want to be aligned with? How can I NOT be the long covid girl when there’s so much hypervigilance and energy that goes into keeping me functional? When I don’t want anyone else to experience it?

It just really struck me that, while Dr. Putrino is coming at this from a different perspective, he’s experiencing the same identity crisis most of us are. It helped me understand him more, and I hope it helps him understand our experiences too.

You can listen to A Friend for the Long Haul - A Long Covid Podcast on all the platforms, but here’s a nice little Spotify embed for ease: