Coronavirus in Context: A Story of Long-term Recovery

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Hi, everyone. I'm Dr. John Whyte, Chief Medical Officer at WebMD, and you're watching Coronavirus in Context. We're hearing a lot lately about the long term effects of COVID-19. To help share her personal experience with COVID, I've asked Rachel Baum from New York to join us. Rachel, thanks for joining me today.

Thanks for having me.

Let's start off with your story, because you actually got infected in March. Tell us what happened.

Um, my-- actually, my fiancee was-- uh, came down with it first. He's a musician. He plays with a band. One of the, um, band members is married to a nurse who worked in a hospital who had tested positive. He didn't realize that-- his band member did not realize that he was asymptomatic. And when he went to the band practice, he shook hands, they sang together, and my fiancee got sick, and two days later, I got sick.

What symptoms were you having at that time?

Um, it's funny. I didn't have the cough at first and I did not have a fever. The first thing I had was what they call, um, riggers. Um, chills where you can't stop shaking. That lasted three days where I was under blankets. Nothing would stop it. It was the most bizarre feeling. Um, almost like you're having a seizure all the time.

Now, Rachel, did you have to go to the hospital?

I did not go to the hospital. I was afraid to go because I'd heard, number one, they don't want you to go unless you were, like, on your death bed. And I didn't feel that I was on my death bed yet.

I did call the, uh, physician. I called the county board of health, and I called the hospital to find out if I could get a test. Um, because the symptoms were similar to what I thought was COVID-19. Nobody had a test. None of those places had a test. This was around March 10, 11, or 12, around then.

When did you start to feel better?

Um, OK, it is July now. I've had periods where I have felt more normal, but, um, I've never really gotten better. Um, I've had numerous, what I would call a relapse, where, for a couple of days up to 10 days, I'd feel worse than I did in the beginning. Um, and so I've kind of-- because it's been over 100 days of being sick, um, I'm kind of thinking this might be my future.

Rachel, it's been 100 days as you pointed out. Wow. What's been the worst symptom?

The fatigue. It's like a fatigue I've never had before where, for example, we'll go for a walk with the dogs. I'll get maybe-- I don't know. I used to go three miles no problem. Now I'll go, um, maybe a quarter of a mile, sit down, and my fiancee has to go get the car to pick me up. I can't move.

And that's never happened before?

Now it's-- well, now it happens all the time. So, like I said, it's kind of my new-- new normal.

And how does that make you feel? You did an interview with WebMD, and you said, what did I do wrong. Why do you think that?

I tend to blame myself for getting into predicaments. And so I kept thinking, how did I-- how-- why is it that I'm getting affected this way? So many other people seem to get better or have minimal, um, symptoms.

And then I started looking at the people that have died or have been on ventilators for days and days and days. And I'm thinking, I'm one of the lucky ones. But there are-- I know that there are thousands of me, people like me, that have been sick on and off for long periods of time and never really get better, never back to the way that they were before.

And that's in that COVID it's called Long Haul COVID Fighters. It's a Facebook group. And I think there's a couple of other Facebook groups, but this one is international. There are people from all over that have the same types of symptoms or recurrences like I do.

What are your doctors telling you?

Um, at first, they said stay home. Uh, self care, lots of fluids, lost of rest. Come in if you can't breathe. Um, but there's-- you know, there's an element of can't breathe, and also having trouble taking a deep breath. You just-- you don't know what it means, can't breathe, unless you're, like, panting.

And you're-- is that-- is that taking a deep breath? Is that really not-- should I go to the hospital? There was so many times I didn't know. Should I go? Should I not go? They leave it up to you, really, to make that decision.

So-- and I think the scary part is, from what I understand, is that people wait so long, that by the time they do go to the hospital and make that decision, they're-- it's too late. And so it's-- you know, there's a lot of self responsibility to make the decision at the right time.

What advice, Rachel, do you have for viewers?

For viewers? Gosh. Get a support group, because so many people discount this. Physicians do. Your family fam-- family and friends. How could it last that long? Oh, maybe it's all in your head. Get over it already. Everybody's tired of you being sick.

Like-- like I'm not tired of being sick. I am tired of being sick. But you can't-- these are real symptoms. I-- I have stabbing in the back of my-- in my back all the time. I have chest pressure all the time. It's hard to take a deep breath all the time. I-- it's not in my head. But you do tend to get discounted. And, um, I think people are taking it more seriously now, because there's been some articles, like in The Atlantic and some other places.

And people like you who are sharing your story, letting us know that this isn't necessarily done in just a couple of weeks. There can be long term impact and long term effects. And we need to study these more to try to give relief to you and others. I want to thank you again, Rachel, for-- for sharing your story and sharing your insights--

You're welcome.

--and we all wish you well.

Thank you so much. I appreciate that.

And thank you for watching Coronavirus in Context.

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