How do you find fabulous during your seasons of brokenness? Whitney Lauritsen welcomes Marisa Zeppieri-Caruana, a national speaker and the founder of LupusChick.com Nonprofit. Marisa defines “fabulous” as being utterly in love and confident in who you are at your core. Get to know yourself and be okay with the crappy and wonderful things. Protect and advocate for yourself when you know something is wrong and need immediate health care. You are stronger than you initially thought. If you need help in embracing your seasons of brokenness, tune in!
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Finding Fabulous: Embracing Your Seasons Of Brokenness
Our guest wrote something lovely when we first connected and she showed interest in coming on the show. This was about embracing your seasons of brokenness to find new opportunities, adapting to a change in your path, and being resilient no matter what life throws you. That is something all of us can learn from, whether we’ve had those experiences where we felt broken. Most people, if not every person, has gone through their own relative version of brokenness. Of course, that is extremely relative to the stages that we’re going through in life and the circumstances.
I was also grateful for the openness that Marisa shared in her journey, which she said began when she was a pedestrian and the truck hit her at 45 miles per hour, which I can’t even imagine. Marisa said that she had broken ribs, internal bleeding, a fractured pelvis, a multi-lacerated liver, and a head injury. This physical and emotional trauma also led to a lupus diagnosis. She spent a year in recovery, healing and learning to walk again, feeling like her life was over.
This was just at 23 years old. You had to decide if you’re going to embrace this new path or be consumed by your grief. I’m getting chills reading this. It’s the first time I’ve shared this out loud because I was reading it to myself. For lack of a better word, it’s intense to read the story, Marisa. Thank you for sharing that. Thank you for coming on to talk about this. I am looking forward to seeing how this led to your nonprofit.
You also have an amazing career as a health journalist and now you’ve released a memoir called Chronically Fabulous, which I love the name. This is so important because even if someone has not gone through this type of trauma, which hopefully is a rare thing, I hope most people do not have to face something like this.
We, collectively as human beings, go through our own versions of brokenness and need that resiliency to overcome the grief that follows these tough times. First of all, how are you feeling? How has it been given the circumstances, no matter how long ago this was, during a time like COVID where a lot of grief is interfaces on a day-to-day basis? Whether we’re feeling it as individuals or seeing it within the world.
First, I want to thank you for having me here and letting me share my story. When I was hit by the truck, it was in 2002. I just had the twentieth anniversary of that. I was diagnosed with lupus while I was in my recovery, which is not uncommon for autoimmune disease. There are a lot of times people can look back and see a clear trigger of what brought out the symptoms of their autoimmune disease.
For me, it was the physical trauma. It brought out symptoms that had been there since I was a child. They just all hadn’t shown themselves at once, which if maybe they had, perhaps it would have been able to have a quicker diagnosis. For other people with autoimmune diseases, sometimes their trigger is something like pregnancy or maybe they get sick. It can even be an emotional stressor. Maybe someone in their family passed away. Something that aggravates your immune system.
Once I got diagnosed with lupus, I went on this journey in my twenties to figure out what life was like with a chronic illness and even understand what lupus was. I was finishing up nursing school at the time. We had gone over lupus for ten minutes at that point in my schooling. I didn’t know what I was prepared for.
I hear this a lot from my community, people with autoimmune diseases and chronic illnesses. Learning how to live with this, I feel like so many of us were so prepared for a COVID-like situation. What I mean by that is being isolated, having to be on a constant lookout for who’s sick, who should you not be around, and protecting yourself. Also, advocate for yourself when you know something is wrong and need immediate healthcare and work from home.
This has been my life for almost twenty years. My life can be isolating. There are seasons in my life when I don’t leave the house for months. Especially here in New York, in the first six months of COVID, where I live, there was hardly even a car out on the street. For me, it was like a regular day. It was odd. The biggest change for me was my anxiety level went up because the thought of getting COVID while already being immunosuppressed terrified me. Hopefully, that answers that a little bit for you.
It does and it also has me wondering how you felt emotionally. From what I’ve seen, there seems to be a trend of people not understanding what it’s like to have a chronic illness and being immunocompromised during something like COVID. While it may be similar to how you’ve been living your life, how have you felt about other people’s reactions? For example, I hear a lot of frustration with people who are proceeding through COVID however they choose to with only concern for themselves. They do not realize how their choices might impact others, especially those that are more vulnerable to something like COVID. How has that felt for you?Protect and advocate for yourself when you know something is wrong and need immediate health care. Click To Tweet
For so many years, I have been outspoken and aggressive when it comes to advocating for myself. Probably growing up in a loud Italian household where you speak your mind freely helped me with that. Even though people would always look at me weirdly or give me the eye, I was the person before COVID where I would carry Lysol wipes in my purse. When I sit down at the coffee shop, I will wipe everything down or try to sit further away from people. I was the one that was constantly asking people, “Have you been sick?” “Do you feel okay today?” “Have you had a cold?” Things like that.
It’s hard for someone healthy to understand having an autoimmune disease and being on immunosuppressants, which are simple colds that are over in 5 to 7 days, could put me and has put me in the hospital. To them, it might be, “This person’s hyper-vigilant when it comes to asking questions about their health or their hypochondriac.” I’ve heard it all.
When someone isn’t forthcoming and you wind up being down for a month or you wind up in the hospital, I try not to allow that to happen to me anymore because that takes away a whole nother month or two of my life. Now, people are realizing whether they’re healthy or not, “Are you sick?” “Have you had COVID?” “Do you have any symptoms?” It’s tricky now. We meet people that could test positive and don’t even realize they’re sick because they don’t have any symptoms. That, to me, is scary.
I still live in this isolation of sorts. People are a little bit more understanding, but not everyone. I hate to say it, but I know people who tested positive for COVID and still want to work because they didn’t want to miss a day of work. I get that if you’re having financial issues and you’re afraid to miss work, but these are people’s lives that we are playing with.
I have a lot of great friends and people in the community or people that have found their community, even people that have reached out to me that have read my book and they realized, “You have to be careful.” It comes down to not being selfish, being communicative, and saying, “I don’t feel well and I don’t feel safe being around you,” or, “I was not feeling well last week. Maybe we should hold off and we’ll meet again another time.” It’s not worth the risk. I don’t care if you have a cold. I don’t care if you have COVID. Please let me know if you’re not feeling well. Every day is a struggle. I still deal with lupus symptoms every single day. It’s my normal struggle or it’s adding something that could potentially put me in the hospital.
That leads me to want to learn more about lupus because I don’t know that much about it. When I think about lupus, my frame of reference is Selena Gomez and the limited amount of information I’ve had. I know that she has it, but I don’t fully understand what it is. I imagine I’m not alone. It’s also interesting to think, “To have something that maybe people don’t understand, are they acting out of ignorance? Do they not realize how serious and how much it affects you?” Perhaps we should begin with what is lupus? How is it connected to this accident that you had, if it is? How has that manifested for you?
I’ll take a step back because there is still so much confusion and misinformation when it comes to lupus. Since I was diagnosed, the awareness, thanks to technology, communities popping up, and people speaking out. There’s a lot more education out there. In a lot of surveys, if you ask 100 people, you typically have between 30% and 50% that still don’t understand what lupus is.
The easiest way for me to describe it is lupus is a chronic autoimmune inflammatory disease. It’s almost like my body is rejecting itself. Our body turns against itself. For every lupus patient, this could look different. The most common organs that lupus attacks are the kidneys like Selena Gomez, heart, lungs, brain, skin, and blood.
When you think of skin, you could think of someone like Seal, the musician. He has lupus. When you think of Nick Cannon, he has kidney involvement, which is common with lupus. I have no kidney involvement whatsoever. I have never had any. I have more like daily manifestations, which are common like fever, fatigue, rashes, sores, hair loss, and things like that, but mine attacks my blood.
When I go into a flare-up, which you hear that term a lot with autoimmune disease, these times and seasons of life of flares and then remissions, it attacks my blood in the sense of I’ve had multiple strokes, vasculitis, and a blood clot. I have a brain aneurysm right now, which is from something they call lupus vasculitis. I’ve never had a kidney issue and needed dialysis or a transplant. I’ve had other serious medical conditions due to lupus.
Oftentimes, you’ll hear this phrase, “There are no two lupus patients alike.” I can tell you, with the thousands of lupus patients I’ve met, I’ve never met someone exactly like me. It looks different for all of us. In the world of chronic illness, we all deal with the same challenges and frustrations that come with every day dealing with something like this. There are estimates that there are about 5 million lupus patients worldwide. That estimate’s been around since I was diagnosed. I would imagine that in the last two decades, it’s higher. There’s also no cure for lupus and it can be fatal.
Does that lead you to feel loneliness isolation emotionally? You described how you’re used to being isolated on more of a practical day-to-day physical level, but I’m curious on the emotional side, given that no lupus patient has the same symptoms. Does it feel frustrating? Do you often feel misunderstood or lonely because you’re not sure that other people can relate or even have a comprehension of what you go through?
In the first few years after I was diagnosed, I was extremely lonely and there was more of a shame element, which I hear a lot of people talk about in the chronic illness community. Especially if you go back, there are no blogs and social media. There’s no one talking about different illnesses. I have this illness called systemic lupus erythematosus that I can barely pronounce at the time and no one’s heard of in my family.
I’m living in the city of Fort Lauderdale with over a million people and I have only met one other person with it. Sometimes I would have the physical manifestations. You’re in your twenties and you want to date and you want to be out with your friends. People can see that there’s something on you and are asking, “What’s wrong with you? What is that? Are you contagious? Am I going to get it if I drink off of you?” I didn’t even have the answer, so I was petrified to even be around anyone. I isolated myself, which was difficult because I’m a social person.
That’s what led me to start Lupus Chick. It was the feeling of being alone. You’re in the hospital so often or you’re getting IV treatments and then you’re home and you’re on immunosuppressants. You have to be somewhat isolated from people. Back then, we had pen pals where you would write to people in your snail mail, and then finally, the blog started coming to light. I was like, “Maybe this is more of a way to connect.”
Now, with our community and how many people I’ve met and friends that I’ve made over the years, I feel well understood in our community. It’s only talking to a healthy peer who has no knowledge of chronic illness where I can explain to them, but I see the disconnect when I’m talking to them. I get it. They don’t understand how every single day, there’s something going on and there’s no way to fix it.
That leads me to something else that you said, this idea of trying to fix something. It reminds me of one of the most poignant parts of this book called It’s OK That You’re Not OK by Megan Devine. It’s all about grief. In that book, she has a section that talks about how we live in this culture of wanting to fix things. It ties back into something you said about people wanting to go to work so badly despite when they’re not feeling well.
As you were sharing that, I was thinking, “How frustrating or interesting that we live in this time where it feels like we’re so consumed by productivity and problem solving that we don’t allow ourselves to heal or rest or take a step back?” That not only could be detrimental for us but for others, and this ripple effect that it creates.Stop looking at what everyone else is doing because that's their road, and you're on a completely different road. Click To Tweet
You can’t blame it on the individual because we are in this time of so much hustle culture. That’s also evolved a lot when you’re talking about how things have changed over the years. The evolution of social media and blogging opened up a lot of doors for the community, but it’s also revealed so much of this addiction to productivity, solving things, and go, go, go. That’s also leading us to have mental health issues and physical health issues. I’m curious how you manage that within yourself because I’m sure you have to be protective over yourself and you probably can’t work yourself to the bone without compromising how you’re feeling.
When I was first diagnosed, there were years when I couldn’t work at all. I couldn’t feed myself. I couldn’t get myself in the shower. I was in a wheelchair. I had a nurse at our house three times a week to help me with these things. Coming from a super Type A, about to graduate nursing school to can’t do anything for myself was beyond frustrating.
Even now, here we are decades later, we have a large social media community on Lupus Chick and I post constantly. My trick is, at least for me, I don’t stay on social media. I post and I get off. If I need to answer comments or questions, I’ll go back on then close the app. I’m a productive person or at least I try to use the hours that I have every day where I feel halfway decent to do as much as I can, and then it’s rest time for me. I’m building back into my body as much as possible so that I can go on to the next day and not suffer.
I’ve learned a lot over the last few decades about what rest means for me, food, functional medicine, things like that, and all the different things that I can do to get myself to the healthiest version possible of Marisa. I still see it. Even though I know social media is not real, when I am on there, even just for a few minutes, there is such a bombardment of, “Look at what all these other people are doing and the intensity and the level they’re doing it at.” It’s human nature for even a split second to want to compare yourself to what you’re seeing at that moment.
I have to constantly tell myself like, “This is not real. I have no idea what this person deals with. I have no idea if they’re healthy. They may not have a chronic illness. We are completely separate beings. I can’t compare myself to that.” I don’t want to push myself to that because I know where that leads me. When I first got into journalism, which is a highly stressful career and it’s one of the worst triggers for lupus, I went into some of the sickest years of my life. It was because of the enormous level of stress that I was putting on myself.
I also loved my job, so I had to figure out this line of what can I do that I love without killing myself because it was essentially making me worse. That’s where I learned what works for me. I became a freelancer and then I got more into books. I still was able to do my love for writing but at a level where I wasn’t putting myself in the hospital constantly, on chemo, and a mess.
I talk about this a lot in the memoir. No matter what you’re dealing with, whether it’s a chronic illness or whether you’re healing from trauma, regardless of what it is, I truly believe that we all have different purposes in our lives and have different gifts. Your gifts are different than mine, whether we’re aware of them or not.
I always tell people, “Ask people around you what they see the shine from you, what you’re good at that you may not even think is a skill or a gift. Line that up with what excites you and what you’re passionate about, and that’s what you use your energy towards. Stop looking at what everyone else is doing because that’s their road and you’re on a completely different road. You’ve got to make the most out of what’s ahead of you because that’s what you’re here for.”
It took me years to be okay with all of that to the point where whatever anyone else is doing, especially online, I’m excited for them like, “Do it. Go for it. I wish you all the success. I’m doing my own thing here and I’m doing it my own pace.” Some days, I’m a sloth and some days, I’m a squirrel. I’m moving and I’m shaking. I’m doing all the things I got to do. Some days, I’m asleep. For me, that’s okay. I’ve become okay with that, but I don’t think it’s something that happens quickly.
Another thing that comes up as you’re sharing this is so many people are doing their own thing in their own way. It’s a wonderful time that we’re in where there’s so much self-expression. We’re also in this time at the end of January 2022 where I feel like a lot of things online are being re-examined. COVID is revealing the issues of misinformation and the difference between somebody’s opinion, feelings, and choices versus the issues of spreading information, especially someone who might be influential.
There’s been a lot of focus on Joe Rogan and this concern that he is spreading misinformation and what that means in terms of freedom of speech. Given your journalistic background and personal experiences and knowledge with health, I’m curious how you feel when you see voices online who have the full freedom to say whatever they want. There are countless examples aside from Joe Rogan. Gwyneth Paltrow, for example, often gets targeted for her viewpoints and posts online. It feels like there are people taking sides like, “Is she right or is she wrong?” It brings up a lot. She has the ability to post that. Some people might think that she’s doing harm as they feel like Joe Rogan’s doing harm.
I’m curious for you, given what you’ve gone through, but also, you have a journalistic background that tends to be based on integrity and a code of ethics, research, and a lot of things that may not be true about blogging, social media, and podcasting. People can say whatever they want without backing it up or finding the right source that a journalist would have to dig through before they post something. I’m curious how you feel when you see issues like this coming up, especially in the health world.
It’s where my outspoken side definitely showcases itself. I’m sure some people are not going to be happy with my answer here. One thing I’ve learned online, whether you’re a journalist or you have a popular blog or podcast, you’re not going to please everyone. There’s always going to be someone that disagrees with you.
I loved my career as a journalist and I still do freelance. Even years ago, way before COVID, we had a journalist creed. I always thought of it as the medical oath that doctors take. To share the facts is to have a neutral viewpoint when you’re sharing information and not put your own opinion in there. Right about the time I started to consider going freelance, the company I was working for, I would turn in an article and when I would see it come out, it was so different than what I turned in. There was an absolute slant to it.
That’s when I started to take a step back because I knew that, one, it wasn’t the slant or the opinion that I had. I knew I didn’t write it that way and I knew that there was absolute bias. My name was attached to it and I was not okay with that. As a journalist, even looking at some of our major media outlets, I take what’s in those articles with a grain of salt because I know it’s the people behind there and the editor is where that is coming from.
For me, that’s hard because it’s a career that I love and it’s an industry that I have respect for. It was my job, but I don’t even believe some of the things that are put out there. Because we have such a large social community, I’m careful with what I do put out. A lot of my community knows that I have a strong faith. I take pharmaceutical medications, but I’ve also tried a wide variety of alternative and complementary medications and therapies, even medical marijuana and different things, because I want to try almost anything I can get my hands on that could possibly give me a better quality of life.
I’ve tried immunosuppressants and chemos. I know what they’ve done for me. I know how they’ve helped me and how they’ve hurt me. I’ve tried the IV medications, the juices, and a million supplements. Finally, after two decades, I know what works and what doesn’t. I’m open about all of it. There are people that agree with me and there are people that don’t.
I have a huge team of doctors. I’ll give you an example. These are some of the top specialists here in New York. They’re amazing. I have amazing doctors. On the one hand, people are vaccinated. My doctors, even though they’re vaccinated, their stance is, “If you’ve had blood clots in the past and you have severe anaphylaxis, we don’t want you getting vaccinated. We don’t feel safe with giving you this vaccination right now.”
I’m sure that’s not an easy thing for them to tell me, but they’re being honest with me. I might lose some people, but I want to be honest with you. These are MDs that are vaccinated that are telling me, “Marisa, you take steroids and hydroxychloroquine every single day for lupus. Those are the two main drugs for lupus before you start on heavier immunosuppressants. We don’t care what the news says. We know that in the literature, it does give you some protection. You’re not going to knock at COVID, but it’s already going to be in your system if you do get COVID.” I take these every day for lupus, so whether it helps or not, they’re in my body.
It’s such a personal thing. If you don’t want to listen to Gwyneth Paltrow and you completely disagree, that’s okay. You’re entitled to completely disagree with her. If you want to write about it online, there are a million forums that you can go on and write about it. It’s the same thing with Joe Rogan if you don’t want to listen to him.
If you want to be free to do what you want to do with your body and health, then everyone else should also have that freedom. That’s where I stand with that. We can find information. Information is at our fingertips. You have to do your own research, make your own decisions, and dig. I tell people, “If you find one headline, I don’t care if you find it on CNN or Fox News. Go find ten other places about that particular subject and make your own decision about it. I was a journalist and I’m telling you, don’t listen to that one journalist. Go and do your own research.”
If Joe Rogan’s talking about something that you disagree with or you agree with, go dig and then come up with your own conclusion because, at the end of the day, I’ll take everything that my doctors, functional medicine doctors, nutritionists, and whatnot tell me. I’m going to sit there with all of this information and I’m going to come up with my own decision of what I’m going to do for myself. Hopefully, in some way, that answers you. As a journalist, I want people to know that it’s hard because I’ve seen it happen to me with the best of intentions to try to give people the best information possible. Sometimes what we turn in is not what comes out to the public, which is frustrating.You are stronger than you think. Click To Tweet
It points to how many gray areas there are. I know it’s frustrating for me to feel like there isn’t a right answer because you’re right. For every source you find about most things, there’s another source that says the exact opposite. I have been trying to embrace the gray zone and turn it into my own inner compass, which you’re sharing in your advice. That has been a big reframe because many people want to get things right.
We hear the terms perfectionist and people-pleaser, and it’s so much about going with the crowd, but then we also hear, “Don’t be a sheeple and don’t do something just because someone else says it.” COVID has revealed so much about all of this in such fascinating ways that often lead me back to feeling like I don’t know where up is and where down is, what’s right or what’s wrong, and if there is any such thing as right or wrong.
In the health world, many of us are driven by this fear that if we make the wrong decision, it’s going to come to us our health or our lives even. There’s so much fear around that. I feel that a lot. Given everything that you’ve gone through, I’m curious, going back to this theme of resiliency, the emotional resiliency side of navigating all of this information, and all these different doctors. Maybe the conflicts that each doctor has had from the other. How do you personally make decisions and find your own inner compass?
When I was first diagnosed, also being young and naive, now I look at this in general and as life, you hope that people have your best interest at heart, but that’s not always the case. I took all of my doctor’s words for everything when I was first diagnosed. It was like, “Give me all the medications,” because I didn’t know any better. It’s like, “Hopefully, this will heal me in a sense.” I knew that lupus has no cure.
At one point, I was on twelve medications and some of them harmed me. Some of them put me in the hospital and that’s scary. I was diagnosed with PTSD after I got hit by the truck, but then there’s also medical PTSD, which is a lot more common than we hear about now and these things that happen to you. Having a blood clot, pulmonary embolism, and brain aneurysm, there are things that definitely trigger me.
Being in the hospital, sometimes it’s human error. Things go wrong and there’s some trauma associated with these things. I got to the point where I wanted to see what else was out there. I finally found the medications working for me, but I didn’t have a great quality of life, so I wanted to keep digging and seeing what else I could do.
Being stuck in bed, there was a season of my life where I started watching a lot of documentaries like Fat, Sick & Nearly Dead and Forks Over Knives. I love food. I grew up with an Italian grandmother. Everything was about food from 6:00 AM until the minute you went to sleep. I’m working with nutritionists and then I started working with functional medicine doctors and finding all these other things that were out there.
I came up with my war plan of what worked for me and what didn’t. I journaled everything so that I knew, whether I was drinking something or trying a new supplement or something for the first time, what did it do to me. Also, what was the pattern over months so I could see what worked for me and what didn’t.
Once I started to find things that were working for me and overcome bad flares, I recognized that I was a lot stronger than I originally thought and that there were other options. I had to be brave and courageous enough to try them. I’m like, “If I was willing to try chemo, why am I not willing to try something else that isn’t as mainstream that we hear about as chemo?”
Resilience also comes from the people that you surround yourself with. It’s important to have a strong support system, whether friends, family, or an online family. Not everyone has a supportive spouse or friends or parents or whatnot. Especially when they’re chronically ill and you don’t look like you’re sick, it’s hard for some people to get to grasp that.
It’s important to find the right support system and your support system might be something completely different than you envisioned. That helps build this level of resiliency because you have people that are in your corner and you feel like you can make it through. There is a light at the end of the tunnel, and you’re not in this alone. I hope that answers some of that.
It does. It brings me back to another thing you said when you’re talking about your body rejecting you. I was reflecting on how so many people struggle with self-rejection or external rejection. That’s a huge fear. That’s a challenge. Many people are trying to avoid rejection, myself included. I’m incredibly sensitive to rejection. Even rejection that hasn’t even happened, sometimes I imagine it’s going to happen or it did happen.
Rejection is a tough thing, but I’m not sure that many people experience the type of physical rejection that you do regularly. I’m curious what you’ve learned from that. Do you feel like that built up your emotional and mental abilities to not feel rejected? Do you still have to balance the physical and emotional rejection? What else have you learned about rejection, in general, through what you’re going through daily?
Rejection has been a constant theme, especially early on in my life. It’s interesting the way you put that because when you think about lupus as a whole, it is your body rejecting itself. It doesn’t see its tissues and organs as itself, so it wants it gone. That’s why sometimes we hear about people that have plastic surgeries, particularly breast implants. You hear a lot about breast implants in the chronic illness community because you’re putting a foreign object in your body. Your body encapsulates it because it knows it’s not supposed to be there.
Sometimes it will attack it to the point where you get a dysfunctional immune system. It triggered something. That could be the trigger for a lot of people with chronic illnesses. It’s because of something that was put into the body. Lupus, essentially, is your body rejecting itself. For many years, especially in the beginning, and I talk about this evolution in my memoir, I was so angry when I was first diagnosed because I had suffered from these symptoms since I was a child and it was missed over and over again.
I went through this in the ‘80s and my mom was a single mom. We didn’t have health insurance. For her to even save and take me to these doctor’s appointments was a struggle. I’ve been told from doctor after doctor, talked over, and quieted down of like, “She’s been a sickly child. She’s fragile. She needs to rest.” I had clear signs of lupus. I had sense sensitivity, nonstop fevers, rashes, fatigue, and nose, mouth, and body sores.
I should have been tested, but you never even heard about this in the ‘80s. By the time I finally got diagnosed, then I lost everything within a matter of seconds, my nursing career, my independence, any money I had saved went to medical bills. I felt like I had nothing. There was anger there. I was angry at my body. I felt like it had completely failed me. I’m angry at God. I’m mad.
I spent almost a year in recovery in a hospital and I had to be on my back for most of that because of the injuries to my liver. You couldn’t sit up because you put a lot of pressure on your liver when you sit and they didn’t want it to open up again and bleed. I’m on my back on a morphine drip alone in a trauma intensive care unit by myself. You have a lot of time to think and reflect and you go through all kinds of emotions.
For me, it was a faith thing. I asked God to help me see this situation differently because I didn’t want to stay in an angry state. That’s horrible for your body and your physical health. I can tell you over time and I share it like this when people ask me this now. I am so grateful because ever since I was a child, my body has continually fought for me over and over again. She fights for me every day. Her entire job is to try to keep me alive.
All I think about now is, “How can I help her?” It comes back to, “Am I resting enough for you? Am I feeding you the best thing possible that I can give you? Am I willing to be brave and try every single thing I can to help you? All you’re doing is fighting for me and trying to keep it at my pace of how quickly I like to go in life and all the things I want to accomplish.” I want to heal her and help her as much as possible. I’m not angry anymore, but it took decades.
I love the way that you phrased that. It’s like that cliché thing people say about a silver lining and the big lesson that you learned through these tough times. It’s moving to hear that because so many of us focus on our body’s flaws, even if it’s as simple as being dissatisfied with our weight, age, appearance, these things that are ultimately fairly superficial. One thing that I could be better at practicing and is a key takeaway here is being grateful for my body, however it is on that day and not being frustrated when I’m tired. Maybe I’m tired as a sign that I need to step back and rest, not tired as a weakness.
Going back to the hustle culture and productivity obsession that we have as a society and your point about how important it is to rest, I’m becoming a bigger advocate for it. I’ve noticed this myself that I used to want to wake up and open up my to-do list, get everything done, and sleep as little as I possibly could get away with. Also, do everything I possibly can to have tons of energy throughout the day and push myself through that.
I’ve reflected on how many times in my life my body was trying to say, “No, you need to rest instead.” The guilt and the shame that I would feel when my body would give me that signal. Also, my history of having disordered eating and having all of these bad feelings about the way my body looked. Like anybody else, as we get older, the ways our body changes and the shame that many of us carry over these natural changes that are happening within our bodies.Get to know yourself and be okay with the crappy and wonderful things. Click To Tweet
Your point about listening to our bodies and being grateful for it and your line about all you think about now is how to help your body melt my heart. I want to repeat that to myself because it could be a complete paradigm shift. How did that shift things with you? It sounds like it helps you overcome a lot of anger. I imagine that you’re not anger-free. You must still go through those days. What do you do on the days when your grief and anger show up despite everything you’re trying? How do you move through that?
I have days that I’m frustrated. It had been a little while. I feel like life’s never quiet. One time, I’ve had a lot of pain. With lupus, pain is common, but it’s a different kind of pain. I was told randomly and I was not expecting it that I have this eighteen-millimeter tumor on my rib that they found. Now I have to go and have all these scans.
When I drove home, I had that moment of like, “Can I get a break for a month?” It can be super frustrating. I sat back that night. I had a million things to do that were already on my to-do list like you were sharing and they became unimportant at that moment. I’m like, “What am I killing myself for? Am I going to be mad at myself because I didn’t do my three loads of laundry that day, organize my makeup drawer, and go run my errands?”
In the grand scheme of things, life is my biggest goal, to stay alive. That’s where I’m at every day. I talk to some of my closest friends that always let me vent it out. I’m analytical, so I need to go over all the roads in my mind and they let me express that. They’re great listeners. My faith comes into play a lot. I came to a conclusion, “I got ran over by a truck. I have a brain aneurysm. I lived through blood clots. Things that absolutely should have killed me. I’m going to get through this as well.”
For me, I already knew that I was so stressed that day and my body was letting me know that it was anxious. That was a night that my whole schedule changed. It was laying in my bed, reading a little bit, watching some Netflix, having my favorite treat, and painting for a little while. I love to paint. That was not on my schedule at all, but it was what my body needed at the time.
I always think about, “How can I help her?” That is a question that goes into my mind every single day every time I’m eating something, making food, drinking, or whatever I’m taking as far as a supplement and whatever I’m watching. Even if someone new comes into your life, the energy they bring or the things they’re talking about. If these aren’t things that are life-giving to me at this point, I don’t want to say I’m taking them out 100% because sometimes you can’t do that in life, but I am cautious. I have strong boundaries of what comes into and around my body, physical space, and mental health.
That’s something so many people aspire to have. The context of when you said so many things have happened to you that likely could have killed you, I don’t think I’ve ever met anyone who has gone through what you have. It puts me in this state of awe. I feel in awe of what you’ve been through in your life and grateful that you’ve shared it not just on this show but you do in so many different forms.
That phrase that you said of life as your biggest goal is another one that’s doing something to me physically. In my stomach, I’m like, “That is such an amazing thing to hear,” especially given that many of us are so goal-driven. Especially as women these days, many women are practically obsessed with reaching goals. It’s due to the fact that there’s been so much suppression and inequality. A lot of us feel that to feel fulfilled to prove ourselves, we have to constantly be going after goals and in the mental health community.
Even during COVID, I’ve heard phrases around, “If the only thing that you accomplish today is to stay alive, you’ve achieved something.” That sounds like it’s your mantra in a lot of ways and it gives so much perspective. There are two other questions I had before we wrap up. One is, given the name of your memoir, Chronically Fabulous, I’m curious how do you define fabulous because each of us has definitions for what it means to be fabulous. For me, I think of a lot of superficial things, to be honest. When I hear the word fabulous, it’s often in the context of looking good as a woman, but there are other levels and definitions to this. What does that mean for you?
That’s such a personal thing because when I think of fabulous, I think of being utterly in love and confident in who you are at your core. My definition of myself as fabulous is I love people and I’m compassionate. I love to help people. I love to paint. I love art. I want to encourage people. I love building other women up. I love telling them what’s so amazing about them. That’s who I am. It comes out naturally.
Getting to know yourself and being okay with all the crappy things about yourself and all the wonderful things about yourself, owning it and running with it, and putting that version of yourself out every single day, not what you think looks good or what is going to look good on social media. Being you sum up being fabulous because you don’t even have to work at it. That’s who you are. When you have to work at something, you’re being something that doesn’t come naturally to you. I don’t have the energy for that. I want to embrace who I am right now and who I was born with at my core and I’m okay with that. I’m happy with that.
That’s something I’m trying to embrace and work through in my life. It’s tough. For me having a background as a people-pleaser and perfectionist, I waste so much of my decisions and even my identity on what I thought other people wanted because I was trying to avoid the pain of rejection. I found that I experienced rejection, criticism, and other negative social interactions no matter what I do.
It’s painful when you put yourself out there in a way that feels authentic to you and somebody doesn’t like it. Like you’re saying before, I don’t think there’s a way around that. The more that I’m reminding myself of, “There’ll probably always be someone that doesn’t agree with me and doesn’t like me, but that doesn’t mean that I should stop doing those things and being those things.” I’m adding that into my new definition and perception of fabulous. I’m grateful for that.
I want people to be happy. Yes, it’d be great if everyone liked me. Being a journalist, I got over that real fast because people are vocal. If you write something that they don’t agree with and they don’t like, you know with podcasts and blogs or whatnot, people online are little keyboard warriors. They can get nasty and opinionated because they’re seeing a speck of you and your life and they want to give their opinion about it. Things like that got me a thicker skin.
I am also learning how to live my life the best with a chronic illness and getting to the point where not everyone’s going to understand it. Not everyone’s going to understand why I sometimes need to be in bed for a week because, at that point, my body will heal itself to the point where I can get back to my life. It’s okay if you don’t understand it. That’s not your job in my life. You don’t have to understand what’s going on in my life.
It also comes down to my beliefs as far as my faith. I can see what I believe God gave me as gifts and what my purpose is here. My purpose is clear now as I’m getting older over the past few decades. My goal is to fulfill the things that I’m supposed to fulfill while I’m here. Whoever doesn’t like it and understand it, run with that and you can run with that for the rest of your life, but it has no bearing in what I’m going to do. I don’t have the energy to worry about that.
I have to keep my eye on my focus because that could take up essentially so much of our life and time that we have here. I’m all about time. I see time differently than a lot of people that are healthy and haven’t had this medical crisis lifestyle think. How much of your time do you want to spend worrying about what other people think?
I feel like I need to write that down to ask myself every time I fear other people’s thoughts because you’re right. I even look at my procrastination. This came up in another episode with Kira who came out on the show. She said something along the lines of how this focus on other people all the time drains us and takes us away from what’s important and when we are so focused on trying to control other people’s reactions, that was at the core of it.
It’s probably exhausting on the level that myself and others don’t even realize because we’re so used to feeling that exhaustion. When you think about why people are so burned out in stress, a lot of that’s the emotional stress that takes a toll on us physically. For someone like me who spends a lot of time trying to do things right to avoid rejection, ultimately, it’s not moving me forward or focusing on where I will feel my best. Thank you. I’m honored that you took the time out, speaking of which, that you spent your time with me and to share this with the reader.
My final question is something you virtually have already tied into, which is people that don’t understand you and how you manage it. Based on your experiences, I’m curious what people who don’t have a chronic illness learn in terms of being more compassionate and doing their best to understand even when they might not fully understand?
When I read that book about grief, It’s OK That You’re Not OK, I was reading that because I wanted to better understand how to support people in grief. I would love to know how I can be more aware and conscientious around people who have a chronic illness as you do. Do you have tips for a reader who wants to show up better for others?
I have some tips and a couple of different areas of tips. Before COVID, I used to tell people that couldn’t understand every day. I would say to them, “Imagine back when you had a bad cold or the flu and how awful you felt. You feel okay for a few minutes, so maybe you’d get up and try to make yourself a meal or think that you could get dressed and go do something, and then you have to put yourself right into bed. That’s our life every single day.”
A lot of people that have COVID and feel terrible fevers and body aches, you’re having trouble breathing, which is also common with lupus patients, this is a constant thing for us. We’re trying to do the basic necessities of life, plus work and having a relationship. I take care of my elderly mom full time. You’re doing all of these things and you’re feeling like this every single day.
Especially for anyone that’s gone through COVID or had family members and loved ones who have gone through COVID, the doctor’s appointments, medication, and being in the hospital, that’s been my life for many years. There’s never a break. You get the questions like, “You’re not better yet?” It’s such a punch in the gut the number of people that ask questions like this.
It’s like, “This is the definition of chronic. I’d be happy to get your dictionary for Christmas. This is our life.” It frustrates us. I try to put on a strong face because I want to help people get through it and inspire them, but we don’t even like hearing it every single day or feeling like this. Keep those things in mind when you hear that someone you know has a chronic or incurable illness.
I’m all for tangible ways of helping someone and what I mean by that is we see this a lot, especially with social media, “Let me know if there’s anything I could do,” or, “I hope you’re okay. Reach out if you need anything.” I’m never going to reach out to you just because of who I am and tell you that I need something. I’m going to try to do it myself, even if it almost kills me because I’m stubborn and independent.
However, my friends who have made the biggest impact in my life are the ones that reach out to me and say, “I’m going to come by on Thursday night. I have a key. I’m going to come by and I’m going to make some meals for you and put them in your freezer.” “I’m going to drop off some food.” “I’m going to the supermarket. What can I get you?” “Can I come and help you this weekend with laundry?” “Can I watch your children for the night so maybe you could get some rest?” “Can I take you to a doctor’s appointment?” “Can I go pick up your medicine at the pharmacy?”To get deeper connections, we have to get into the messy, hard places where we may not agree with one another. Click To Tweet
Something as simple as grabbing someone’s medicine so that if they’re having a hard day or they’re in a flare, getting up, getting dressed, getting in the car, and going there could be the only thing they do that day because of limited energy. It’s these tangible things that are so helpful. On the emotional and mental side of it, sometimes it’s having someone there that you can be honest with and listen. I don’t need you to fix anything. This is not getting fixed. No one’s going to be able to snap their fingers and lupus is going to be gone.
If I can have a real conversation where it might get uncomfortable and dark there for a moment and you’re willing to sit there with me in it, those are the things to me that stand out. Those people in my life have become the closest circle that I consider my family. I have those moments where I’m like, “This has been hard.” I’ve had a beautiful life and I’ve had so many incredible things happen to me, but it’s been so hard for so long. There’s going to be a time when I’m not alive anymore and this is over in those dark moments. With the pain, sickness, and medication all day long, you’re reminded 2 or 3 times a day that you’re sick because you’re putting pills in your mouth to survive.
I’m looking forward to a day one day where that’s not my life anymore, but at the same time, I love the fact that I am alive and I still have the opportunity to do so much. I want to be able to have those kinds of conversations with people and it doesn’t freak them out or they don’t feel like they’re helpless like, “I just need to be able to talk,” it would be amazing, trust me.
If you have someone in your life that has a chronic illness and they know that they can come to you and share these feelings because they are uncomfortable and messy, they might freak you out for a moment. For us to be able to get that out, I’ve had counselors and therapists that I feel comfortable talking to as well. It’s nice when you have 1 or 2 people in your life that you can talk to about those things.
That’s a beautiful and important reminder. It’s disappointing how many of us have been conditioned to move away from the discomfort. That’s the big theme of this show. It’s okay to be uncomfortable. You’re not responsible for somebody else’s comfort. That ties back into the lessons many of us, people-pleasers, have internalized. You have to do whatever you can to keep someone comfortable and that’s what leads to trying to fix things and problem solve, but what if instead, you show up and hold space, whatever that space may be?
Thank you for sharing that. That would deepen our relationships in such beautiful ways. At a time when social media feels draining or superficial and people feel disconnected and lonely, what you’re sharing would bring us all closer or at least closer to an important few in our lives. It helps us better understand them and become more compassionate, which has such a big ripple effect.
You’ve had such an amazing ripple effect on me, Marisa. I try not to reuse words, but grateful keeps coming back to mind. I feel like you shaped my perspective in some profound ways. Thank you for being here. For the reader, if you have a similar reaction, Marisa, what’s the best way for someone to reach out to you to connect with you? You mentioned the Lupus Chick. What’s the starting point? Even if it’s not directly related to lupus, but they’re feeling moved and inspired and they want to be connected to you, where do they go from here?
We have a couple of different places you can find us. I wanted to throw it out there. Our community is not just people with lupus at this point. There’s a lot of overlap disease, a lot of chronic illness, and a lot of people that have had PTSD and different types of trauma. We have such a large community of people that support one another. On Instagram, it’s @LupusChickOfficial. It’s probably our most active social media, and then Facebook is LupusChick. My website is LupusChick.com. You can email me directly at [email protected].
I can’t wait to go dive deeper into all of your work and connect with other people and hear their stories. Thanks again for sharing yours.
Thank you, Whitney. This was probably my favorite interview because we didn’t talk about the typical questions that I get asked, so I appreciate that. To get deeper connections with people, we have to be able to get into the messy, hard places where we may not agree with one another. We may have completely different opinions, but we respect each other enough as human beings to listen to someone else’s journey and what works for them and what is working for them.
How we can show love to someone is by cheering them on even if we don’t completely understand or agree with what they’re doing, but we want to see them the happiest and healthiest version of themselves possible. Thanks for letting me talk about different aspects of this life with chronic illness.
You’re absolutely welcome.
This episode is sponsored by Zencastr. Visit zencastr.com/pricing to try it out for free. And when you’re ready to up level, enter the code “wellevatr” to receive 30% off your first 3 months of the Pro plan!
- Marisa – Marisa Zeppieri
- Chronically Fabulous
- It’s OK That You’re Not OK
- @LupusChickOfficial – Instagram
- LupusChick – Facebook
- [email protected]
About Marisa Zeppieri
Marisa Zeppieri is an author, former journalist and Mrs. New York, and the founder of LupusChick.com, a nonprofit and social community that reaches almost 400K people per month.
Her memoir on chronic illness, Chronically Fabulous, published in 2021 by Broadleaf Books and her personal story is featured in Lady Gaga’s Anthology, Channel Kindness as Chapter 35.
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