COVID-19 long hauler Shelby Hedgecock on life with chronic illness and why you need to be your own advocate
meet Shelby,
long-COVID survivor. She’s also the founder and CEO of Blooming Magnolia, a non-profit for long-COVID research and mental health advocacy.
we’ve all been affected by the pandemic in some way, but few have had their lives flipped upside down like Shelby has. rather than let it knock her down, she’s shown resiliency every step of the way.
no matter what you’re going through, Shelby is an inspiration to all. i hope this conversation reminds you of how much you’ve grown over the last year, and to take a hint of what Shelby’s all about, i hope it also encourages you to bloom moving forward.
Let’s start at the beginning.
I was diagnosed with COVID on April 20, 2020. I started to feel bad around the 16th; that’s whenever I became symptomatic. It started with headaches and GI issues and then it just progressed pretty rapidly. There were points where my oxygen saturation would drop to about 87 at night, and I would have a racing pulse of over 130. And long story short, I never recovered. I’ve been dealing with this going on eleven months now. My lasting symptoms include neurological and cognitive issues, my taste and smell is still very warped, and I have debilitating fatigue. My lungs, chest, and spleen are scarred and I have cardiac issues. I was diagnosed with POTS, as a lot of long-haulers are. I also found out that I have a brain injury, which they think was caused by a lack of oxygen during my acute infection. That was a really tough pill to swallow. I had no underlying conditions. I’m also a former personal trainer.
You were diagnosed about a month after California essentially shut down – March 13th. I remember that everyone was initially scared, but we’ve since seen this really divide people, which I’m shocked by. I thought this would unite people, honestly. Did you see this turning out the way it was?
I didn’t think that it was gonna be like this. Whenever I heard about COVID, it was pretty scary but I figured if I got it, then I would be fine because I am younger and I live a pretty healthy lifestyle. I didn’t think that I would be one of the ones severely affected by this. remember when this doctor that I’m friends with on Facebook posted the first COVID case in Santa Monica. I was at work and like, “Oh my gosh!” I just didn’t think that it would affect me like this and you look back and it’s like, whoa. Having a politicized illness isn’t fun and it really sucks because there really is no debating this whole COVID situation. It’s very real and there’s millions of people falling chronically ill because of it. And not only that, but there’s so many people dead around the world. We just surpassed 500,000 here in the United States, so it’s tough. And it’s crazy to see it unfold because I’ve been sick so long.
It’s devastating. You touch on a good point, because we’re both young and were fairly healthy. To then become chronically ill, I can’t imagine it. I don’t think anyone could walk a day in your shoes, let alone comprehend it – especially those who are denying it.
The problem is that people don’t get that surviving is not always recovering.
More and more data is coming out on this, but we’ve been sounding the alarm for months. Chronically ill, very sick people like myself have been sounding the alarm for almost a year now. I realized fairly quickly that I wasn’t getting better and I didn’t understand why. And thank God I found support groups to know that I wasn’t alone. But some people don’t understand that they literally have somewhere around a 1 in 3 chance that they can fall chronically ill from this, and sometimes your symptoms don’t manifest immediately. Sometimes you have mild symptoms or you’re asymptomatic and then months later, you start having issues. This is what we’re seeing and there’s not enough public recognition. The answers lie within our bodies and nothing is gonna be accomplished if we all don’t work together.
What is it actually like advocating for yourself?
It is so difficult. As of last week, I had to find a new doctor, because she and I weren’t on the same page. My inflammatory markers are really high again and I asked for a rheumatology referral, and she wouldn’t give it to me. We’re seeing COVID become its own chronic illness. A lot of people refer to it as chronic COVID, long COVID, and that’s exactly what it is. Through more research, hopefully we’ll get on the right path someday, but it’s very, very difficult advocating for yourself, especially whenever you don’t feel good. And nobody has any answers for you, really. I’ve had to learn a lot about my body and I feel like I know my body more than anybody else. I’ve learned a lot about how the medical system and health care system in general works and it’s exhausting. But you have to do it. You really don’t have a choice.
You have to wake up every day and face this and fight for yourself. But through fighting for yourself, you don’t realize how many other people you’re fighting for as well.
I have to say, hearing you talk, you include so many medical terms. I’m like, “Whoa.” I have to stop and Google it. You’ve really had to learn as you go.
Yeah. One of my doctors told me, he’s like, “Shelby, you should go to medical school.” And I’m like, “No, thank you.” I’ll pass on that. But he was just really proud of me for being able to speak to certain things and understand what’s going on with my body, doing my own digging and research. We’ve all had to do that - all of us. It’s kinda like we should have our own certificate or something. But this is what the chronic illness community has had to deal with for decades, and it’s fallen on deaf ears. Hopefully with more research into Long-Covid, it’ll shed light on other chronic illnesses and we can just lock arms and get through all of this stuff together.
Right. Being your own advocate is not just limited to physical symptoms. Like you said, it’s emotional, it’s draining, and it touches every part of your life. You’re already really strong; this isn’t the first hardship you’ve faced, right?
Yeah. Back in 2017, I had just lost my job. My grandmother had passed away. I was kind of seeing somebody and I had my heart broken. It was just one thing after another and I wasn’t living the healthiest lifestyle at that time. I was in like the deepest, darkest depression of my life, and I was suicidal; nobody really knew it. Something really told me I needed to be here and that things would get better. It was at that moment that I decided to just really dive into fitness. I hired a trainer and that’s when my love for fitness and developing a healthy relationship with food and just overall wellness – mind, body, and soul – came about. Fitness really saved my life.
To go from that to now, where you’re kind of at the mercy of your body and you have to work with whatever limitations it’s giving you, I can’t imagine what that’s like.
Before COVID, I was a personal trainer. I love the gym. I was consistently pushing myself and now, not being able to have that outlet has been incredibly hard because I can’t really exercise. I try to go on walks but, for example, I’ve been in a month-long relapse and I haven’t been able to walk much. My life has truly done a complete 180. Some days I literally just have to be in bed. And if that’s all I can do, then that’s my personal best for the day. It’s been very, very hard adjusting to being chronically ill from being a very active, on the go, on fire person all the time.
That’s not to say that you aren’t doing much now, though, because you still work forty hours a week.
I still work forty hours a week. I’m so incredibly blessed to have the job that I do. My employers at Zentap have been nothing but compassionate and I know I’m privileged. There are many other long haulers who have lost their jobs. It does take a lot out of me, but I’m thankful that I’m able to work and I’m able to provide for myself and my little family.
Life goes on whether you’re chronically ill or not.
The severity is truly not lost on me and it baffles me that others can’t see it. Living in California, I think part of that is because the restrictions have changed a lot. I’ve kind of called it “whiplash” because things change so frequently. You live in California, too. What do you think about it?
My heart really goes out to the small business owners and the restaurant industry and stuff. It’s just hard to see. Because even if you haven’t been affected health-wise, you’re affected economically, right? In some way, shape, or form, we’ve all been affected and even if you haven’t been sick from this, I’m sure you’ve dealt with mental health issues from it – isolation, depression, and anxiety. So many people have lost their jobs. I just think overall it’s been handled horribly. And you know, that’s all I can really speak to that. It’s just been a disaster.
I think it falls down on the individual more so than anything – not just regulations and going out, but I think individually doing the best you can to cover those bases of physical, mental, emotional, spiritual health. It’s really taught me that I have to take responsibility and also be grateful for the ability to do that. It’s not something you have to do; it’s also something you get to do.
It’s so true. We all have a duty to get through this. It’s a movement of billions. Every choice really matters. So if you go out, wear a mask. You have people that are screaming about their freedoms, and it’s very upsetting to see, as somebody who's dealing with the chronic effects of this and who has had their life flipped completely upside down. Early data suggest 1 in 3 people who are infected with COVID will be dealing with long term issues. It’s like, you all don’t want to be a part of this club. There’s so much misinformation and it’s just… it’s hard. It is so hard to see people just being careless because I’m like, “Y’all have no idea. No idea.” And I hope that they never do.
To kind of put it into perspective, what does a day in your life look like?
I wake up and brush my teeth and do all of that. And then I work from 7am to 4pm. I’m able to work from home, so I’m in marketing and I’m doing consultations with my clients all day. After that, I couldn’t tell ya. Every day is different. Some days I go and I just lay in bed. I’ve been working on a big project so I’m trying to break that up into chunks for months and work on it a little bit each day, which thank God I have, because I wouldn’t have been able to cram everything in at the last minute. But sometimes I’ll work on that. Sometimes I’ll go for a walk, call my mom. I’m a very solution-oriented person so I do like to work on my creative stuff – whether it’s making a funny TikTok, editing some footage. I can’t tell you what a day looks like because every day is different.
“It’s like a grab bag of symptoms and you never know what you’re going to pull out. Am I going to be in so much pain that I can’t move from my bed? Maybe. Am I going to feel okay enough to go for a walk and get some fresh air? Maybe. I don’t know. It’s very different nowadays.”
I feel like this is a cliché question, but how do you stay strong? You’re laughing with me as you talk about this, and it’s a really serious thing you’re going through.
I laugh so I don’t cry, really. It’s hard. I’m strong because I have to be. I don’t have a choice. This is my body now and I’ve gone through so many stages in the past almost year of grief – anger, sadness, gratitude, and I think I’m at the acceptance stage. I’m getting there. I’m trying to accept that this may last for a while, maybe my entire life. But I’m grateful that I’m here. I’m grateful that I’m able to walk and I’m grateful that I have my brain, even though I have a brain injury. I can still use my gifts and impact the world. My why is so strong. I’ve always had a vision of empowering billions of people and sharing my story, traveling the world to transform billions of lives. And I didn’t ask to have COVID; I didn’t ask to be dealing with this for so long - I didn’t ask for any of this. However, I strongly feel – and one of my mentors told me as well – your gifts don’t always come in pretty packaging. Oftentimes your gifts come really beat up and gross and ugly, but it’s what you choose to do from there. I just want to leave this world a little bit better than it was whenever I came in it. I just want to help people. Ultimately what gets me through each day is just knowing it’s gonna get better. It’s gonna get better and I’m gonna play a part in it getting better. It’s all about impact.
Speaking of impact, can you tell me about your project?
I have founded a nonprofit called Blooming Magnolia. We’re a long COVID research and mental advocacy non-profit. Our mission is to empower others by providing a platform to strengthen and protect mental health and support those dealing with long COVID through education and funding of therapeutic research. I’ve been working on it for months. We will be launched on March 15th and I’m nervous. I’m so excited. Everything just feels right.
I’m so excited for you, and it’s just so incredible. It’s so needed and it’s amazing to see how your purpose is rooted in it. You’ve said, “This is what I want to do,” and instead of letting coronavirus stop you, you’ve really just incorporated it and kept moving towards your goals.
I truly believe the harder the ball hits the pavement, the bigger the bounce… if you choose to ride it out. And that’s what I’m doing. There isn’t enough research going on, at all. We’re gonna be raising money for research into our condition and also the mental health branch of the nonprofit, which is for everyone. It’s not exclusive to Long-Covid patients, but both branches go hand in hand. There are a lot of projects we want to do – whether that be sponsoring a sexual assault survivor or investing in mental health resources for teens. I’d also like to work to make therapy more accessible. The possibilities are endless. This has been a long time coming for me. I’ve always wanted to start a nonprofit, and it’s come full-circle. It’s literally divine timing.
Wait, wasn’t bloom your word for 2020?
Yes. There’s a lot of significance with this. I was named after Julia Roberts’ character in Steel Magnolias, and a couple of months after being diagnosed with COVID, I came back to this idea of starting a foundation. I saw I wasn’t getting better, so I just jumped back into action with it. I revisited the magnolia name and I fell in love with it because the magnolia flower, which represents resilience, has been around for almost a hundred million years. It thrives in adversity and it adapts to different climates. When I was thinking of the name, I knew I wanted it to have something to do with magnolia. And then I kid you not, one night as I was falling asleep, it literally came to me and I was like, “Blooming Magnolia.” It’s perfect because bloom was my power word and it helped me get through the toughest times last year, and I want to carry that with me forever. At the end of the day, my mission has always been to transform souls and impact billions of lives, and I can speak to that through Blooming Magnolia. I’m really excited. I honestly feel like it’s my sole purpose. This is why I have been through the things I’ve been through. Every single day has led me to this moment and now I’m able to give back. It’s not just about me; it’s about what you can do to help others. How can you make a difference? This is how I’m gonna be able to make a difference.
How can people get involved or help out and do their part?
You can visit us at www.bloomingmagnolia.org. There’s a bunch of different resources, information about us, and you can donate there. We’re going to need volunteer moderators as we grow. We’ll be putting together a fundraising committee and an advisory council, so there are numerous ways to get involved.
Like you said, the timing is perfect, especially because you have a big birthday coming up, too.
Yes! We’re launching March 15th which will be 333 days since I got sick, and 3 is a huge number to me. March 15th will also be about a year since the world shut down. I’m turning 30 on March 30th. It’s just like 3’s are popping up everywhere and every single sign I’m getting is saying, “This is perfect. This is right on time. Go for it.” So here we are.
It’s awesome. You’re mindful of everything and you find purpose in the details. What is a piece of advice you have for someone who is going through hardship right now who maybe hasn’t found their footing in it, or doesn’t see that meaning yet?
Take it one day at a time. That’s all you can do. Things will get better. If all you can do is just get through that day, then you deserve the biggest pat on the back. But it will get better and just hang on. I know it’s a roller coaster, but just keep on hanging on. There are people out there fighting for you, no matter what you’re going through. I just think it’s important to take it one day at a time, always. That’s literally what’s gotten me through the last almost year.
Amen. Everything is still very much a part of your daily life, but when you look back on the last year, what will you think about?
Everything changed. Having this illness and having it affect me to the magnitude it has, it really gives you a new perspective on the world and on life in general. I’ll probably be emotional. Not only because I’m launching this non-profit, but just, like, wow. I mean, a year? A whole year has gone by and almost a month from that date was whenever I got sick. It’s just like, holy shit! It’s mind boggling. That’s when everything changed, at least for me.
Yeah. What is one thing everyone should know how to do?
How to take care of mental health and self-care, that’s number one. And everybody should know how to realize that everything that happens to you can be a gift if you allow it to be. I’m not gonna sit here and say that every single thing that happens to you has a purpose, per say, because really bad things happen to amazing people. But I think that being able to shift your mindset and taking care of your mental health above all will help you get through any sort of situation.
And it’s something that evolves over time. What works in one season of your life might not work moving forward, so it’s really about checking in with yourself continuously. It’s a non-stop conversation.
It’s growth. You grow. Every season of your life demands a different version of you. Self-care for me at fifteen looks different now at almost thirty. It’s important that you really put yourself first and you take care of your mental health above anything because if you can do that –whether it’s therapy or its daily practices on your own or whatever – then any obstacle that comes in your way, you’ll be like a freaking bulldozer, right? Like a bulldozer for adversity, you just power through. I still have very bad days and honestly, my mental health has been shit the past month because I’ve felt so horrible in this flare that I’ve been having. But by giving yourself grace one day at a time and taking care of that mental health, you’ll be able to get through anything.
I have to tell you, I could not think or speak more highly about you, and yet in the back of my mind, I know you’re not even close to the top. Not to be cliché, but… you’re on the cusp of a huge bloom.
I can’t really agree more with you on that in regards to myself. And I appreciate you so much for saying that. That means a lot to me because I have been through hell. A lot of people know me as this bubbly, outgoing, go-getter that has accomplished a lot of stuff in her life, but I’ve hit rock bottom. I’ve bounced back. A lot of people don’t know that I was suicidal at 27. I was sexually assaulted right before my 28th birthday, and then I became chronically sick at 29. I’m excited to be at a place in my life where I can use those experiences, step into my power, share my story, and help others. That’s all I want to do. And that is blooming. I just feel like I’m continuously going to do that and honestly, I’m just getting started.
You are. What do you want the main takeaway for people reading this to be?
In regards to Long-Covid, I think it’s very important for patient allies to step up and use their voice. Up until now,, it’s just been sick people like me advocating for us. We need this to be a part of every single conversation about COVID. We need public recognition through accurate representation in the media, and by locking arms with patient allies, that’s truly gonna help so much. There’s still so much misinformation, and so many people that don’t know that long COVID exists, believe it or not. And they’re suffering in silence! We need to change that. Surviving is not recovering.
And for mental health, be kind, because you never know what someone is going through. This is a trauma anniversary for many people. Some have lost their loved one, their job, important relationships, their home, their business. It’s important we show compassion during this time and if you are suffering mentally, you’re not alone!
seven questions with shelby hedgecock:
I can’t go a day without… cuddling on my cat, Elsa. She’s my baby. She’s a queen. I work to support her lifestyle.
Everyone should listen to… Gary Vee. He has amazing tips and great insight. Manifestation Babe is really awesome, too. She’s amazing.
Life is better with a little… sunshine.
Everyone in their 20s should… go on a trip far away. Whether it’s in the United States or out, you need to travel. Whenever things are safe.
One insider thing to do in Los Angeles… brunch in LA. It’s the best with the bottomless mimosas. Then go look at that beautiful view at the Hollywood Bowl overlook.
What the world needs right now is… love sweet love!
One way to spread love is… be kind. You never really know what somebody is going through. If you can provide that shoulder for somebody to lean on, or do a little something to brighten somebody’s day, do it.
Follow Shelby on Instagram here.
Follow Blooming Magnolia on Instagram here, and visit the Blooming Magnolia website to donate, learn more and get involved.