lupus: what it feels like
16 minute read
marisa zeppieri has connected thousands of people with autoimmune issues together through lupus chick.
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growing up, marisa zeppieri spent a lot of time in doctor’s offices and hospitals. she suffered from allergies, asthma, body pains and other symptoms; but her doctors at the time couldn’t say why these things always seemed to happen to her. this continued until she was in her early 20s. then, at 23, marisa was hit by a drunk driver and admitted to hospital, where her significant injuries also caused her previous symptoms to flare up in full force. it was then that she received a diagnosis: lupus.
lupus is a chronic autoimmune disorder, where the body’s own immune system begins attacking the body’s organs. symptoms vary be person, and may include a butterfly-shaped rash on the face, mouth ulcers, joint pain, difficulty breathing and/or sensitivity to the sun, among others. in canada, it is estimated that 1 in 2,000 people are diagnosed with lupus. although it more commonly affects women, it is known to affect men as well.
treatment for lupus depends on the type and severity of the diagnosis, and may include various medications to suppress the immune system, including chemotherapy treatments. other treatments may be required to manage symptoms and respond to damage caused to various organs.
after spending more than a decade as a health journalist and founder of her own community, lupus chick, marisa sat down with healthing.ca to talk about resilience in the face of life-changing trauma.
this interview has been edited for length and clarity.
can you tell me about your condition that you were diagnosed with?
i’ve had systemic lupus for 20 years now, i was diagnosed at 23. from the lupus i get vasculitis and from that i have what they call a lupus vasculitis brain aneurysm.
is that scary that you have that?
some days, yeah. some days i forget that it’s there. i’m just so busy. but it does concerns me that it’s there. i get it checked every six months to see how big it’s grown. when it reaches a certain millimeter size they’ll do surgery, but it was quite the shock when i got the phone call because we weren’t looking for it. they thought i had actually had a small stroke, which i’ve had a couple of small strokes in the past from the lupus. so i was not expecting that.
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what led you to being diagnosed with lupus in the first place?
looking back, i probably had lupus symptoms since i was around eight years old. i was just not healthy since i was really born. i always had some weird autoimmune thing. i was allergic to my mom’s breast milk and then i was allergic to all the milk alternatives they had. then i got diagnosed with asthma. when i was around eight, i started getting really bad body pains and sores in my mouth. i had these rashes. i was exhausted, like i would come home from school and i would just sleep for the rest of the day, which was obviously not normal for an eight-year-old when all my friends were outside playing. my mom, she’s a single mom, took me to the doctor as much as she could but back in the 80s, we never heard the word lupus. it was never even brought up to us; i was never tested. it was always, well, she has a lot of allergies. she has asthma, she’s really skinny. she’s just not a healthy child. i was always in the hospital and i just sort of kept pushing through.
in my late teens, we moved from new york to fort lauderdale. i would go outside and within 10 or 15 minutes, i would get these rashes and i would get fevers the next day and i would just be exhausted. i did not put them together because i did not even think that i was having a reaction to the sun. but i made it through my teenage years and got into college in fort lauderdale, i went to school to be a nurse. at the very end of my college career, i was crossing the street one night, and i was hit by a drunk driver in a pickup truck.
that really was the turning point. i spent about a year in between the hospital and rehab and recovery because i had very severe internal injuries from that. the thing with a lot of autoimmune diseases is you’ll get these weird symptoms here and there but then you’ll have this, like, main trigger that sort of pushes everything out and makes it so much worse. the accident was definitely it for me.
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i was in the hospital and i ended up having a small stroke. i had these rashes again and i had these fevers so of course they’re thinking okay, is it is it from a head injury? are the fevers because she has some kind of infection? they did a million tests and they brought in infectious disease and rheumatology. three weeks later, i was diagnosed with lupus. and, you know, it all made sense, because all the symptoms. people are like, oh, three weeks, that’s really quick, but the reality was at that point, i had really been sick for about 15 years.
it was a lot to handle when i was 23 years old between getting hit and then getting the diagnosis. it wasn’t a great year. but when i talk to other people, i hear that also a lot of them had a lot of large trigger as well that pushes the symptoms out. it makes sense.
that’s a lot to deal with in your 20s.
my 20s were really tough. i lost a good portion of my 20s between just recovering from that injury and then there was also the emotional and mental aspect of that. they diagnosed me with ptsd. when i was in my 20s, it’s not like it was today with social media, i had no idea what it was. i just knew that i was getting these really weird panic attacks and i didn’t like being in cars. i didn’t like even being on sidewalks. i was terrified i was going to get hit by something.
then i went to rehab because i had fractured my pelvis and i had my ribs fractured on my one side. it split my liver, so i have a lot of injuries to my liver. i had to lay flat for like, forever. your muscles waste after a while, so i had to go to rehab to start walking again. i felt like that sucked away that whole year, and then the lupus was not well controlled. so, for three years after that i was basically in and out of the hospital with my mom and my grandma, and they took care of me while we worked with doctors and tried to figure out how to get this lupus somewhat under control. i would say there was like a good four years there were i was just basically either in bed or in the hospital.
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how did you cope with recovering from being hit by a drunk driver as well as adjusting to this lupus diagnosis?
that’s sort of where my book starts. i went through all of these different stages. at first, i was very angry when i was in the hospital, because it just ripped my college career away from me. everything changed; all of a sudden i’m dependent on everyone else because i have this weird diagnosis that i have no idea what it is. i was definitely very angry and i was very upset.
you have a lot of time laying there in the hospital by yourself, so i had a lot of time to really just think about the fact that i should not have been alive. even the trauma surgeon was like, i don’t even know how you made it to the hospital.
when you have all of your labels or what the world labels you as — a college student, or i’m going to be a nurse — when all those things are all of a sudden gone, then who are you? i spent a lot of time just thinking like, who am i if everything is taken away from me? what do i want to do with my life?
i sort of went on this faith and spiritual journey during that time. over the years my attitude changed into more of, “i’m not going to be this person who gave up, who totally gave in to everything that happened to her.” after a couple of years, my attitude was — okay, i’m still going to do everything i want to do, it’s just going to look a little bit different now. i’m still going to go out and i want to help people, but maybe it’s not going to be through nursing. it’s going to be through some other endeavor.
what was this endeavor?
around when i was 29, 30 years old, all these blogs started coming out and i built a little blog called lupus chick. all i really wanted to do was connect with other people to find out what’s working for them and to talk about lupus. because even though i lived in fort lauderdale, a city of over a million people, i only knew one other person with lupus. we didn’t have instagram and facebook and things, so there was really no way to connect.
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this was right around the same time that i started my career as a journalist. it sort of all worked well together. the things that i learned as a journalist i brought over to my community online and lupus chick grew. today we reach 400,000 people a month; we’re not just people with lupus, it’s people that have overlap with autoimmune disease and chronic illness.
we give away college stipends; education is really important to me. i know, obviously, how it affected my college career and i hear from men and women all the time that are diagnosed later in life, that they can no longer do what they were originally trained to do in college. they have to all of a sudden start over and it’s a financial burden, especially when you’re sick and going through treatments. the average cost of taking care of lupus every year, they estimate is between $50,000 to 60,000, [usd] for treatments [in the united states]. so, we try to help them, we’re giving out our 12th one this may.
we built this community, and we reach a lot of people. we do a lot of education and resources and things like that. just being a health journalist, i was able to help people in in that way and bring them information and connect them with the resources they need. i feel like i’m able to get into that, because i did have some of the nursing background and the medical background. and i just love to write, so i felt like i was at least able to give back and help others just in a different way. then chronically fabulous, which is my memoir, that’s sort of an extension of that as well.
talking more about your condition about lupus, what is the treatment for that?
with lupus, they say no two cases are alike and i can honestly say in the thousands of people i’ve met, i’ve never met someone who has the same exact symptoms as me – it really depends on your severity. some people have very mild lupus, they don’t need any medication. i know a lot of people that sort of have this moderate severity and then severe lupus can be fatal; i have had friends pass away from it. it depends on if it attacks an organ. the most likely organs to be involved are the heart, lungs, kidney, brain, skin and blood.
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depending on severity and organ involvement, typically plaquenil or hydroxychloroquine, which i’m sure you heard of during covid, is the first line of treatment, and then steroids. and then from there, they will typically go on to biologics and immunosuppressants and older chemotherapy drugs that they no longer use for cancer. all of these things, the goal is to basically shut our immune system off because our immune system is on overdrive and so it’s attacking our own organs. it doesn’t see our own organs and blood and everything as safe or as ours or so it goes on defense to attack it.
if you’re working to slow down the immune system, are you considered immunocompromised?
yes. i’ve been on steroids for 12 years. i’ve also taken the older chemotherapy drugs which you have no immune system when you’re on those things. the interesting thing is, pre-covid, i lived my life in the way that i feel most people live their life now, wearing a mask and always having hand sanitizer. i always clean off surfaces.
before covid ever happened, people would look at me like i was a little strange, or i’d even get comments from people like, “oh, you’re paranoid,” or “you’re so worried.” and i’m like, your cold, which you’ll get over in three days, can put me in the hospital. i always ask people “have you been sick?” “have you been around someone that’s sick?” “please don’t come to my house if you’ve been sick.” even if i’m out with my girlfriends and we’re all at a restaurant and we’re trying new drinks and food and we want to share with one another, i have to ask them just because i know that my immune system is not strong enough to fight off what theirs can fight off.
how do you manage running your own business plus dealing with the treatments?
there’s times where it’s really tough and things fall to the wayside. as i’ve gotten older, i just realized that some days i have great days and i feel like i can do so much. and then, you never know with lupus, i’ll wake up and my body lets me know immediately “you’re not doing anything today” and everything sort of has to be put on pause. the great thing about our community is if i can’t get to the messages, or i’m late on something, they always understand because they’re going through it themselves.
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it was a little bit harder when i worked in health journalism, because there’s deadlines and things like that. there’s definitely a lot of pressure, but i tend to work well under pressure so that helps. after 13 years i sort of stepped away from that, just because i wanted to take better care of my health and i wanted to focus more on books.
stress is one of the main triggers of lupus, and it doesn’t just have to be bad stress. it could be someone getting married or moving and being excited and moving into a new house, but the stress that that puts on the body can cause major lupus flare up. so, as i’ve gotten older, i’ve just made decisions that if things bring a lot of stress in my life, then unfortunately, they have to be cut out.
is that hard sometimes, to think that some things can’t be a part of my life anymore?
it’s definitely frustrating. sometimes i feel like i missed out on things or i wasn’t able to do all of the things that i wanted to do just because my body can’t handle it. or i’ve tried to do them and i wound up in the hospital from a flare up. that definitely is frustrating, but i just tried to remember that i’ve had a great life despite all the crazy things that have happened. i’ve accomplished so much even dealing with all of this. i don’t think anyone would have faulted me if i just did what i have to do to just take care of myself. you don’t have to go above and beyond if you don’t want to. but, i don’t know, i just feel like i’ve done a good job. i feel like i’ve helped people, which was my goal.
maybe i’ve missed out on some things but i’ve also had some of the most incredible experiences and i’ve met amazing people through lupus chick. i’ve been invited to speak and travel to different places. so that’s been amazing. i feel like i’ve been very lucky.
it sounds like you’ve worked really hard to get here.
i did. it’s funny. you hear these people say, when you go to sell on social media, like, “oh, well, look at all the stuff that they have going on.” this was 13 years of work. you know, if you come in now you’re seeing the fruit of 13 years of planting.
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i always tell people when they reach out and they want to be an advocate and they want to start something like this, i’m like, do it. because if one person really thinks that they cannot make a difference, i want them to look at the lupus chick story and what one person can do literally in a hospital bed bringing hundreds of thousands of people together. just imagine if we all stepped up in some way and the difference that we could make.
have you ever met someone who misunderstood your condition or misunderstood what it meant?
oh, yeah, all the time. i still do. i’ve had family members where it wasn’t until i was on chemo that they were like, “oh, wow, you’re really sick, you really have a serious condition.” i’ve been sick this whole time, but because i don’t really look sick on the outside, they couldn’t grasp it. but i think when people hear that chemo word, all of a sudden, their ears perk up, and it’s like, oh, chemo is for sick people. i think that that is definitely a little frustrating.
it happened a little bit more before covid, but when people see us taking extra steps to not be around germs, they don’t understand why. i think now there’s a little bit more understanding of what a virus or a bacteria can do to you and how it can potentially change your entire life. so that’s one thing.
i’ve had people also just misunderstand what lupus or autoimmune disease is on its own. there’s a lot of surveys that speak to this as well. there’s still a large percentage of the population that thinks lupus is contagious in some way. they won’t sit next to people on buses, they won’t hold someone’s hand, they won’t share food with someone who has lupus, but lupus is not contagious at all. there’s still a lot of stigma around those things.
in my younger years, when i was dating, i would get rashes and i would get these nose and mouth sores. and people would be like, well, if i dated you and we’re intimate, am i going to catch this from you? in my 20s i wasn’t as well educated or as outspoken as i am now in my 40s. so, i sort of curled back and i was very embarrassed. for those first few years i didn’t tell anyone that i had it.
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what helped you build that confidence?
i think there was a lot of different things. lupus chick in general and speaking out online, talking to people, finding other people that were like me, having a better understanding of the disease. and i think just with maturity, being more confident in yourself as you get older you aren’t as concerned of what others think. you are who you are and you’re proud of yourself; you have a different level of confidence. you can try to educate people and do your best to help them understand but at the end of the day, i know that i can’t make everyone who is healthy completely understand what i go through.
you have a book out now, congratulations!
chronically fabulous has been a three year endeavour that i’ve worked on and i’m really enjoying right now just talking to people about the book and doing some smaller book signings. obviously, things are still somewhat closed here in new york so things are limited, but i’m doing a lot of stuff online.
the really neat thing is, there’s people that are reaching out that don’t have lupus, some of them don’t even have a chronic illness. maybe they know someone with a chronic illness, or they’re just going through some type of trauma, or they’ve been through a traumatic event and they’re connecting with the book. that’s how i specifically wrote the book, i wanted anyone that had trauma or difficulties to understand that, just like our seasons change throughout the year, this isn’t going to be their life forever. there’s an element of holding on to hope throughout that season so that when you’re out of it, you can move forward, you don’t get stuck there. that’s been really neat to just hear other people’s takeaways, even if they don’t necessarily have lupus.
marisa’s book, chronically fabulous, is now available. readers who would like to learn more about lupus, as well as access support and other resources can check out lupus canada, as well as marisa’s website lupus chick.
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what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn
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