This episode features, Jessica Hulett. She and thousands like her are called COVID long-haulers. They continue to have debilitating symptoms months after initially contracting the virus. Doctors don’t yet have many answers leaving these patients in search of relief and support.
Jessica Hulett is a freelance writer, editor, and marketing strategist in Ossining, NY. She moved to Westchester after more than 15 years in Manhattan and Brooklyn, where she worked for a lot of dot-coms that no longer exist. She lives with her husband Evan, 6-year-old son Colter, and two cats named Jack Black and Leslie Knope who hate each other. My hobbies include starting novels and not finishing them, hiking, and figuring out how to make healthy food taste good.
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Rebekah Shackney (00:00):
Hi, I'm Rebekah Shackney. The coronavirus pandemic has affected all of us in one way or another and continues to do so, but of course, some people have been affected much more than others. As a therapist, I spend my days helping clients process their grief and manage their fears. But as a person I'm struggling through this, like everyone else, this is a therapist takes around advice today. I'm speaking to my friend, Jessica Hewlett. She fell ill with the virus back in March, and she still hasn't completely recovered. She and thousands like her, a called COVID long haulers, and they continue to have debilitating symptoms months after initially contracting the virus. Doctors don't yet have many answers leaving these patients in search of relief and support. Thank you so much for being here today, Jessica Hewlett, thank you for having me. So tell me about yourself.
Jessica Hulett (01:08):
I live in Ossining. I am 45 years old, which I guess will be important when we talk about the characteristics of people who have COVID. Um, I am a writer slash editor slash digital marketing strategist, and, uh, I live with my husband, my two cats and my six year old son.
Rebekah Shackney (01:26):
Awesome. So, um, tell me about your experience with COVID.
Jessica Hulett (01:30):
Well, I first got sick in mid-March. Um, it was actually, I think we went into lockdown on a Monday and I started having symptoms on a Tuesday. Wow. And so I was actively sick for about two months and then I started to get better and then I've been having kind of relapses in like three week cycles. So every three weeks I get sick again with the same symptoms that I had when I was actively sick. And then I have other stuff that's just kind of all the time symptoms still at five months later.
Rebekah Shackney (02:04):
Okay. Tell me about some of those symptoms.
Jessica Hulett (02:10):
Um, so my all the time symptoms are fatigue. I have horrible fatigue. I could go to bed every day at two o'clock, and probably sleep through the night. I've done it on several occasions. Um, and headaches. I have headaches pretty much every day and brain fog. I just, I have a really hard time concentrating on anything. Um, I forget words. My short term memory is just shot. Um, so those are my, all the time symptoms. And then the ones that come and go are shortness of breath, which was pretty much a constant when I was actively sick and a racing heart. Um, even like, you know, resting my heart rate can go up to like 120. And, and then just like muscle and joint pain. That's kind of the whole kit and caboodle.
Rebekah Shackney (03:00):
Wow. Wow. What are you doing about it? Like did you, what did your doctor say about this?
Jessica Hulett (03:03):
So I have a great primary care doctor. She's super supportive. She always takes me seriously, which has not been the case with doctors in the past, which is great. Um, so she's like, you know, yes, you have, you had COVID um, you are still having symptoms. You're not the only one, but at the end of the day, she says, we don't know what to do with you. We don't know how long this is going to last. We don't know why you guys are still sick and we don't know how to treat you. So you know, her, her MO right now is just, we're going to send you to specialists or send you to a cardiologist, a pulmonologist, a neurologist, and they're going to check everything and make sure that there's no lingering issues. And she ran a million blood tests on me and I had a chest scan and, and all the things and everything was more or less normal. Wow.
Rebekah Shackney (03:53):
So far. And yet you're still feeling these symptoms. So the test scame back normal. Did you have scans?
Jessica Hulett (04:01):
Yeah. I had a, um, so I had one test that came up abnormal. It's called a D dimer test. And it's a blood test that they use to check for the presence of blood clots and mine was elevated. So that naturally made my doctor concerned that I might have a blood clot in my chest and my lungs. So I had a CT scan of my lungs, but it didn't show anything. And she said, there's a lot of reasons that the D dimer can be elevated. It could just be inflammation, which my chest X Ray did show. I do have a lot of inflammation in my lungs.
Rebekah Shackney (04:30):
And so you and people like you have been nicknamed the long haulers, so you are not alone in this.
Jessica Hulett (04:40):
No. And for the longest time, the prevailing narrative was like, you either get really sick and go to the hospital and you might get intubated. And if that happens, you might die or you're going to get better in two weeks. And you know, there's thousands of us in the middle that got it. Didn't get sick enough to go to the hospital, but also didn't get better. And I have, I know, five people who had COVID and out of those five only two had what I guess you'd consider a complete recovery.
Rebekah Shackney (05:11):
Can you tell me what is a long hauler?
Jessica Hulett (05:14):
Yes, so a COVID lung hauler is someone that got sick with COVID and then never got better. Okay. Um, and there's thousands of us. There's several, several Facebook groups, um, like support groups for COVID long haulers. There's one I'm in for just women. Um, there's a Slack channel that I think has like 10,000 people in it and the medical community doesn't really have answers for us. So we're kind of all trying to figure it out together and sharing tips and tricks and supplements and tests to get and, and all sorts of stuff every day. Trying to just figure this out.
Rebekah Shackney (05:54):
How did you figure out you were in that category?
Jessica Hulett (05:58):
Honestly I read an article. Like I was kind of thinking, why am I not getting better? Everything says I should be getting better in two weeks. Why am I not getting better? And then I think it was in the Atlantic, there was an article about people who are getting sick and not getting better. And, and then more articles were written and more articles were written. And then someone mentioned this Facebook group. So I joined the Facebook group and then, you know, there's thousands of people just like me with pretty much the same set of symptoms.
Rebekah Shackney (06:32):
And so, so you and your friends and tens of thousands of other people are just having these lingering symptoms. What are you doing about that? How are you handling that?
Jessica Hulett (06:45):
Well, I mean, you know, on a practical level, um, I'm going to the doctors, um, you know, getting my tests done, um, you know, trying to eat healthy, trying to exercise as much as I have the energy for which isn't very much. Um, and you know, and I joined, uh, there's a bunch of Facebook support groups. Um, I've joined them, which has been great because, you know, you can post like, Hey, I have this weird thing going on. Is this a COVID thing? Or is this another kind of thing? And then, you know, a hundred people will be like, no, that I have the same exact thing going on. So, okay. So that's been really helpful for that and for just, you know, making me think I'm not crazy. And for also like just random things that I never really thought anything of, like someone will be like, Oh yeah.
Jessica Hulett (07:28):
When I was really sick, I had this awful, awful calf pain. And then I think back and I'm like, so did I, for like three days, I just couldn't even walk my calves hurt, but it didn't seem like it would related or I thought, you know, just weird stuff like that. So that's been helpful. It can also kind of weigh on you because just cause everyone's so sick and no one's getting better. And if I spend too much time in the groups, I come away feeling kind of hopeless. Like I'm just never going to get better.
Rebekah Shackney (07:57):
Oh, wow. So there's some of it that's very supportive and validating, but another part when you immerse yourself too much in it, it brings you down. Yeah. Yeah. I think, you know what it reminds me of right now with watching the news. Yes. Um, I know at the beginning of all of this, I was like, I I've been on a news fast personally since 2016. Um, which means I only intermittently listen to news. Um, and then at the beginning of this, I spent an afternoon watching MSNBC or something and felt horrible, just like we're all gonna die. Um, and it was scary, but, um, but I, so I guess I can see why that you need to really balance your intake of the Facebook group. Yeah. Um, so what other supports do you have?
Jessica Hulett (08:48):
Um, well I have my family. They're great. Um, I have a therapist who has a lot of other clients that are all dealing with the same thing I am. So, yeah. Wow. So she's, she's got some unique insights into this and what people are dealing with and the group, the Facebook group.
Rebekah Shackney (09:05):
Yeah. Yeah. So, so you had mentioned that the, you know, the narrative at the beginning was, you know, people really either went into the hospital, got sick and that forbid died or got better in two weeks. Um, and,
Jessica Hulett (09:22):
And I don't know anyone who got better in two weeks for the record.
Rebekah Shackney (09:25):
So I think we do know a few people who've gotten better, but, um, but it's, so, I mean, basically that's been the, the overarching narrative from the beginning and it still is in the minds of medical professionals. Yes. And so the fact that you're going to doctors and saying I'm having these symptoms, um, and they don't have the research in front of them to say, this is what this is. Um, and I find that a lot of doctors then we'll fill in the blanks and that must be pretty invalidating to you.
Jessica Hulett (10:02):
Yeah. I had a really bad experience with a cardiologist that my primary care doctor referred me to. Um, so I wasn't actually able to get a test because in Westchester, when this first hit, the only people that were allowed to get tests were people who were hospitalized. So I had a clinical diagnosis based on my symptoms. And,
Rebekah Shackney (10:23):
And let me just interrupt you there for a second. That is actually the way most diagnoses are made of most everything else.
Jessica Hulett (10:30):
That is a good point. Yeah. So, and, um, and so, you know, I said to the doctor, I'm like, I had, I have to say suspected, I had suspected COVID and March, and he's like, well, you didn't take a test. And I was like, well, no, I couldn't get a test because I didn't go to the hospital. And then he's like, he's like, well, you know, elevated heart, you know, that could be based on like different medications you're taking or do you drink coffee? And I'm like, yeah, I've been drinking coffee since I was 16. I don't think it's suddenly a problem now. And he's like, well, sometimes coffee can do that. And I'm like, really? It can just raise my resting heart rate to 120 a cup of coffee, so,
Rebekah Shackney (11:13):
Oh, wow. Did you want to just punch him? I kind of want to,
Jessica Hulett (11:16):
Yeah, I really did. And, um, but you know, he, he's running the tests that my doctor wants him to run and then I don't have to deal with him again, if I need any sort of follow ups, I'll find another doctor, but
Rebekah Shackney (11:28):
Oh, but that's, but that, I think that your experience is probably similar to so many other people right now.
Jessica Hulett (11:37):
Yeah. So many people in the Facebook group have been diagnosed with anxiety,
Rebekah Shackney (11:42):
And I'm sure you do have anxiety because this sucks, but, um, you also have all of these very real symptoms. Yeah. So, wow. Thank goodness. Your primary care physician is able to say, you know what? I don't know, but here I'm going to is what I'm going to do because, um, I'm hoping that at least helps a little.
Jessica Hulett (12:04):
Yeah. And I don't understand either why as a doctor you'd want to just be dismissive, this is like a new illness. Don't you wouldn't, you want to learn about it or ask questions? Like where's the kind of intellectual curiosity, you know what I mean?
Rebekah Shackney (12:18):
Yeah. No. I mean, I think that for anyone saying, I don't know is really hard and I like, I'm really impressed that your GP said that. Um, and I think that when you're going for those just visits to other doctors, they like to have the answers and that, and not knowing for a lot of doctors for a lot of people is hard and saying, I don't know,
Jessica Hulett (12:46):
Rebekah Shackney (12:47):
And of course they wouldn't say it like that, but I, but you're absolutely right though. I mean, I've done tele-health meetings where the doctor got it completely wrong and did a scan and saw, Oh, that's not what I thought it was at all. And I would have treated you for something completely different that, and that's, you know, something that happened to me, but so, so of course they can be wrong. Of course we can't necessarily communicate everything that's happening in our bodies because what you're feeling are, are there are these symptoms, but there's also just sensations or this or that. And maybe things you haven't even realized. So why wouldn't they be, you know, investigating. Yeah. But I think that it's hard for people to admit. They don't know. So they're going to say, Hey, you drink coffee, stop doing that. So are you still drinking coffee?
Jessica Hulett (13:40):
Oh yes, I am.
Rebekah Shackney (13:42):
Jessica Hulett (13:43):
Good. Because I love coffee
Rebekah Shackney (13:45):
You should have things that you love in your life. Um, so, so taking a step back, um, so basically because you didn't have an official test diagnosis, he was dismissive of you.
Jessica Hulett (14:00):
Rebekah Shackney (14:01):
Okay. And I think it's important to note that, you know, you were doing what your doctor told you. It was dangerous at that time for you to leave the house and go to the hospital and get a, I mean, even if they would have given you a test. So the majority of people who were, who were diagnosed in the early days were people who called their doctor, got this clinical diagnosis. And then when we're told to go isolate in a bedroom upstairs or whatever. So you mentioned you had a therapist, how is this affecting you emotionally?
Jessica Hulett (14:37):
Well, it's, you know, it's not easy. No. Um, you know, just not just being sick and not knowing if you're ever going to get better. Yeah. Or if you're going to get worse, um, it's scary. And you know, sometimes I feel like there's something horrible lurking somewhere in my body that they just haven't found yet. That's going to, you know, pop up and kill me. And I know that's my anxiety talking, but, um, we get to, I mean, it's tough, you know, and it's tough to be so tired all the time. And it's tough to have my cognitive function all over the place and it's made it very hard to work. I've seriously cut down on my freelance work just because I can't do it. I have about like a good hour and a half in the morning where I can function and write or edit. And that's pretty much it for me, for the whole day.
Rebekah Shackney (15:28):
Wow. Wow. So it's had a huge impact on your life. So no wonder you're feeling, I mean that emotionally lousy.
Jessica Hulett (15:41):
Yeah. And I feel a lot of guilt too. Like, you know, I have a six year old rambunctious, little six year old boy, and I don't have the energy to do all the things with him that I want to do. And you know, this has been a terrible summer for him for a whole host of reasons. And I kind of wish I could do more to make it fun for him. And I just don't have it in me a lot of days.
Rebekah Shackney (16:07):
So I will tell you that the reason we have guilt, the reason we feel guilt is to is to connect us to each other, not to alienate us from each other. We feel guilt so that we don't do things that, you know, the judge would say, you're guilty for like murder and rape and theft and that sort of thing. So while I totally understand that mother guilt and I have it too, a lot of the time, cause I'm, I'm a working mom and as you are, and I want to encourage you to try and let that go and try and relax around that and know that, you know, this is a moment in time where it's, you know, life is not the way anybody wants it and he's going to be okay. And I know just from knowing you that you do spend tons of quality time with him and you're very connected to him.
Rebekah Shackney (17:05):
So I would encourage you to work on letting go of that guilt when you notice it and really giving yourself permission to at least let go of some of that stress, you know.
Jessica Hulett (17:18):
I will try.
Rebekah Shackney (17:20):
I know it's hard. I know it's hard. And it's about turning your mind again and again, and reminding yourself that that guilt is only adding to your, your suffering. Yeah.
Jessica Hulett (17:31):
Rebekah Shackney (17:33):
And it's not helping culture at all. Yeah. And it's not helping, you know, you know, it's not giving you more space to connect with him. So it's not, it's what we would call an ineffective emotion in this case. It's totally understandable. And I get it and it's not serving you. It's not. No, no. So tell me about some of the other symptoms, emotional symptoms you're going through.
Jessica Hulett (18:03):
Um, I mean, you know, just a lot of anxiety, there's definitely some, you know, depression in there just because I've always been the kind of person who like, you know, writes a ridiculously long to do list and judges myself based on what I accomplish on that list. And, you know, if an empty to do list at the end of the day, it means I didn't do anything worthwhile. Uh, so yeah, so it's, it's been tough trying to give myself space to rest and relax and do what my body needs to do. I have a friend who told me years ago, he's like, I've never met anyone with such an inability to relax. So, and it's true, but I feel like. Well, they don't know me very well. I seem pretty chill. Yeah. I'm not, I have no chill.
Rebekah Shackney (18:54):
That's funny. I think that the reason people see you as chill is because you're so laid back and easy going when you meet, when you're interacting with people, you're so accepting of other people and you give other people their space, their space to relax. So, but you don't give it to yourself.
Jessica Hulett (19:14):
Rebekah Shackney (19:15):
That's really interesting. That's no, I mean, it is interesting. And so, but now your body is insisting that you have to, you almost have to create a different type of, to do list, you know, self care and take a nap and stop feeling guilty and stop feeling guilty and stop feeling guilty.
Jessica Hulett (19:38):
Yeah. We did get, um, kind of a ridiculous little above ground pool for the backyard this summer. And when my son's not around, I do like, I call it my pool meditation. I go and just float in the pool for a really, really, really long time and just breathe. And that's kind of become my, my little like relaxation recharge kind of thing that I do in the middle of the day.
Rebekah Shackney (20:02):
Excellent. That's really excellent. Um, yeah, I mean, that's, it sounds like something I would recommend people doing. I, you know, can I come over and do that?
Jessica Hulett (20:11):
Rebekah Shackney (20:13):
We'll do it together. Um,
Jessica Hulett (20:16):
Well there's not enough room for both of us to do it together. We'd have to take turns. I'll set a timer.
Rebekah Shackney (20:23):
That's funny. Um, so you're, you're not able to work like you wanted to, you're not able to parent, like you want to, you're not able to do a lot of things like you want to, how have you restructured your brain to allow for that?
Jessica Hulett (20:42):
Um, I'm not sure I have.
Rebekah Shackney (20:44):
Jessica Hulett (20:45):
I think it's a process.
Rebekah Shackney (20:46):
Jessica Hulett (20:47):
Um, you know, I have days where I don't have it in me to cook dinner and I feel bad about getting takeout. I'm like, like we have food in the house. We shouldn't be spending money on takeout. And you know, I'm still trying to give myself permission to be like, can't cook tonight. Yeah. I just can't, we're just gonna get pizza.
Rebekah Shackney (21:11):
Good. Good. Yeah. I mean, you have to give yourself permission. You have to allow for, for what pops up. Yeah. Um, and one of the things, you know, that I talk to my clients about, you know, in dealing with these types of uncertainties in this type of just kind of free floating unanswered question of what's happening physically with me, what's happening out in the world. I teach them to practice a concept called radical acceptance. And so basically we've many of us, most of us structure our lives in a way that gives us the illusion of control over our bodies. Our, you know, especially our physicality, you know, we feel like, Oh, if I work out and eat right and do these things, I am going to be healthy. And yet when this type of curve ball hits, how do you sit with that? I've done everything I was supposed to do.
Rebekah Shackney (22:11):
I was, you know, I I'm doing the best I can. I'm a young person. I wasn't supposed to get, um, have problems from COVID. That's not what the news said. So how do you sit with that? How do you accept that? And so with radical acceptance, you look at what you have control over and you do those things, you know, so you have control over going to the doctor, getting the tests, doing your best eat, right. Exercising. If you can, if that makes sense and is recommended by your doctor, um, and meditating and connecting with people and these things that feel good. And those are the things you have control over and what don't you have control over the future.
Jessica Hulett (22:59):
Rebekah Shackney (23:00):
And so when those, when that little, like, feeling pops up that worry that, that, Oh my gosh, I don't know. There's a ticking time bomb in my body. You're allowed to let that go and just, you know, notice it, pat it on the head and let it walk away. And I, I get that me saying that it is super easy and actually practicing it is really, really hard. But when you can really, except that we don't have control over this, that you don't have control over this. There is, it does free you up to focus on what you do have control over. Yeah. And it can be freeing and it's a longterm practice where you turn your mind again and again, and again,
Jessica Hulett (23:49):
Well, I don't have the energy to do anything else. I might as well.
Rebekah Shackney (23:54):
You're going to be the most mindful person in the world after this.
Jessica Hulett (23:58):
So once something to show for it.
Rebekah Shackney (24:01):
Yeah. So are there any silver linings with all of this struggle?
Jessica Hulett (24:08):
Um, well, one silver lining that I do hope comes out of this, um, is that, you know, there's people who have been struggling with like chronic fatigue syndrome, which they call ME now, which I've been reading a lot about. Cause I've been just trying to learn what post viral syndrome is and how it works. And there's people that have been struggling with this for years and not really been taken seriously or, you know, no one's found a way to treat them. And there's a very real chance that what we have might end up being what these other people have. And my hope is that if all of us are this sick, um, then they'll figure it out. Yeah. And then all of those people who have been sick forever can also get relief
Rebekah Shackney (24:50):
Well, and a little bit, you know, I hope that does happen. I hope that the research does come and it is starting to trickle in. It is starting. So, um, Maryland Representative, Jamie Raskin introduced a bill to call for funding to the, the NIH for research on these long hauler symptoms that you're talking about.
Jessica Hulett (25:19):
Oh, I didn't know that. That's amazing.
Rebekah Shackney (25:20):
That's I thought that was really hopeful. And um, several universities are starting to study it. There are several different research projects or research projects that are being formed. So I think the research will come and I have hope for that. And then also journalists are starting to write about it. Yeah. And so as the narrative starts to change, um, hope, you know, and awareness starts to grow. You will get more support. I'm hoping.
Jessica Hulett (25:54):
Yeah. And I'm also hoping that the more attention that is paid to people like me in the news, the more people will start to take it seriously.
Rebekah Shackney (26:03):
Absolutely. Absolutely. And it's so important because tens of thousands of people can't just have had too much coffee. Right.
Jessica Hulett (26:12):
Yeah. And this is not the flu.
Rebekah Shackney (26:14):
No, no, no.
Jessica Hulett (26:16):
I've had the flu. This is not that.
Rebekah Shackney (26:19):
And I've known you for years and I've never seen you struggle this much, you know, and that is, you know, it's hard to watch. It's hard to watch as your friend and I, it's hard to not be able to hug you and.
Jessica Hulett (26:33):
I miss hugs.
Jessica Hulett (26:33):
I know, I know. You know, and so I have such empathy for you and for all of the people who are struggling with this and, you know, I'm hoping you can get some relief soon. Thank you. And in the meantime, call your therapist. No, I mean, I don't mean to make light, but do what you can do to really, you know, let go of the worries and focus on what you, um, have control over. And of course that, uh, you know, as I said before, it is not easy. It is super hard to do that. And so please reach out for support.
Rebekah Shackney (27:17):
I'm glad that you've reached out to your therapist for support because it's essential for people right now. Yeah. When something like this happens when you have this type of unknown illness that has popped up, it's traumatic. And so we need to treat this and process this as a trauma. So apart from, you know, seeking the medical, um, advice and tests and all of that, it's important to take care of yourself emotionally. Yeah. So I, I encourage everyone to, um, you know, seek help and I think it's probably not enough to just get the support from a Facebook group. So make sure you have people in your life you can talk to or call a therapist.
Jessica Hulett (28:07):
Yeah. It's been hugely helpful. Good. And talking to my therapist about it,
Rebekah Shackney (28:10):
You talked about, um, the potential silver lining, finding a treatment or a cure for chronic fatigue syndrome. Have there been any, um, personal silver linings?
Jessica Hulett (28:21):
Um, I think I've gotten a lot better at self care. Um, during this time I have notoriously been very, very bad at it. Um, and haven't really done it at all. I mostly just focused on taking care of everybody else and maybe I'll have, you know, a couple of minutes left to do something to myself, but I've learned to just be like, if I need to rest, I need to rest. And everyone else in the house has to deal with it and they have to figure their own stuff out. And you know, and we're all eating healthier now because I'm trying to eat healthier and, you know, and then there's like silly little things. Like I've started like really having like a skincare routine, which I've never had before, but it makes me feel really good. And yeah, and just little things like that are just, you know, wearing lipstick around the house for no reason that makes me feel good. Just trying to do little things like that to make me feel good.
Rebekah Shackney (29:18):
I love it. That I love little treats that you can give yourself that make you feel pretty or good or just more like yourself. Yeah. Um, thank you so much for being here today.
Jessica Hulett (29:32):
Thank you for having me. It was great. I feel like I had a mini therapy session
Rebekah Shackney (29:37):
And thank you for listening to A therapist, takes her own advice. Remember the information share here today is not a replacement for treatment with a licensed professional. If you've connected with what you've heard here and want to work with me, go to my website, Rebekah Shackney.com and send me a message through my contact me page and please subscribe, rate and review on Apple podcasts or wherever you listen.
Speaker 3 (30:34):