A Nurse Turned Author and Her Struggle with Autoimmune Disease.

In this episode, we are talking about auto-immune disease. Autoimmune disease occurs when the immune system is overactive and attacks and damages the body's own tissues. May 9th is Autoimmune Arthritis Day, and it is also ME/CFS and Fibromyalgia International Awareness Day (May 12).  ME stands for myologic encephalomyelitis, formerly known as chronic fatigue syndrome (CFS). It is a chronic, complex, neuroimmune disease that affects the quality of life of its' patients. Fibromyalgia is a chronic disorder characterized by pain stiffness and tenderness in the muscles of the neck shoulders back hips arms and legs, and there are many other symptoms as well. 80 percent of autoimmune diseases affect women. 

Our expert today is Melissa Marquis, she is a nurse, author, and emergency management specialist. She has many years of experience in nursing, so when she started to not feel like herself, she started on a very long journey to diagnosis of her symptoms.  She wrote a book about her experiences called, Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease.  We talked about her long diagnosis that took 13 years. She emphasizes the importance of self-advocacy and support systems. Melissa's book aims to empower patients and families by providing practical advice and strategies. She talks about her daily struggles and how CT Paid Leave may be a great resource for her to use, as her disease is progressing. She says we should all be grateful for programs like these that helps patients and their caregivers.

You can buy Melissa Marqui's book online at Amazon:  Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease: Marquis MS RN, Melissa: 9798891129184: Amazon.com: Books

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Transcript

Nancy Barrow: 0:01

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. May 9 is autoimmune arthritis day, and it is also me, CFS and fibromyalgia international Awareness Day on May 12, and me stands for myalgic encephalitis, formerly known as chronic fatigue syndrome, known as CFS. It's a chronic complex neuro immune disease that affects the quality of life of its patients. And Fibromyalgia is a chronic disorder characterized by pain and stiffness and tenderness in the muscles of the neck, shoulders, back, hip, arms and legs, and there are many other symptoms as well. 80% of autoimmune diseases affect women. Melissa Marquis is a nurse, author and emergency management specialist. She has many years of experience in nursing, so when she started not to feel quite like herself, she started on a very long journey to diagnosis of her symptoms, and she wrote a book about her experiences called Invisible, a nurse turned patients resource to living well with autoimmune disease and Melissa, welcome to the paid leave podcast. So happy to have you here morning.

Melissa Marquis: 1:31

Nancy, thank you.

Nancy Barrow: 1:31

Well on Zoom, you look great. But how are you feeling today Melissa?

Melissa Marquis: 1:36

Well I appreciate that. You know, today is actually a pretty decent day, so I will take any decent day over any bad day of the week. So yeah, it's the last several months have been quite difficult for me. A lot of different problems creeping up and new diagnosed testing. But as I said, you know, you got to take the good days when you get them!

Nancy Barrow: 1:59

So why did you become a nurse?

Melissa Marquis: 2:03

From an early age as a child, I remember my best friend and I, we lived across the street from each other, and we both wanted to be doctors, probably from the age of seven on, and we used to play we had microscope kits, and we'd play doctor, and we said, we're going to find a cure for cancer. And so that kind of just stuck with me all the way through school. I was really engaged in the sciences in school, you know, really had an affinity towards science and math and, you know, all things body wise, you know, it's just really intriguing. And so as I started getting ready to start looking at colleges and really what I wanted to do, you know, I obviously had to make a decision, you know, do I go pre med? Do I stick to a different discipline within healthcare? So I was looking at pre med. And my senior year of high school, I ended up with a knee injury from years of sports playing, and needed to have surgery. Had surgery. Ended up having a post op DVT, which is a blood clot in your one of your deep veins. And so I ended up in the hospital right as applications were due for colleges and all of this. And so it just, it really kind of threw me a bit at that time. And so I ended up applying for admission to two different physician assistant programs. When I was in the hospital, I had already put the applications in, and of course, the very high number of applicants, and so they only accepted, like maybe 20 students, 25 students per year, so I didn't get into the schools that I had applied to. And so sort of just stuck here. It is end of February of my senior year, and I have no school to go to, you know, I didn't have a backup that I was interested in. And so I thought, well, shoot, and now I don't know what to do with my life, yeah, and I didn't want to, like, take a year off, so I just kind of took that opportunity in as I was in the hospital, I just watched all the staff just kind of paying attention to what they do for work. And I was sort of drawn to nursing a little bit, and just said, Well, you know what? I can easily do that, and then I can always advance my career beyond that, if I wanted to become a nurse practitioner or get a doctorate. You know that field is really endless for nursing. So that's the direction

Nancy Barrow: 4:21

It served you well for what you had to deal with. I chose. So why don't you tell me your story, Melissa, when did you think that something was wrong with you and you started your own journey to figure out what was wrong with you and what were your symptoms?

Melissa Marquis: 4:34

Yes, I was 30 years old then, so, you know, had a fair amount of experience and life lived to that point in healthy all the way up to then, essentially overnight, I just developed these new random vascular type of symptoms with some swelling in my hands and my feet. I had Raynaud's phenomenon, which is a condition where your. Vessels in your extremities, particularly your hands, your feet. Sometimes it can affect parts of your face as well, where your blood vessels constrict, and it reduces blood flow, and it's usually in response to, like cold stress, some type of trauma. And I had experienced none of that, but yet here I am having these symptoms on my hands and my feet, and then I had some additional skin related nodules and painful swelling of my toes and just very out of character. So I sought care very quickly, and based on my own medical information and knowledge to that point, and you know, different providers that I've worked with over the years, I asked a couple of my colleagues what they thought, and they said, I think that might be a rheumatological issue. And I agreed. And so that's where I first went. I just I asked for a couple of referrals from some colleagues, and started my journey down that road and trying to get to the bottom of it. But yet, the first doctors that I saw essentially told me that what I was experiencing at the time, the symptoms that I presented with, were in my feet, primarily, and they said, Oh, well, it's just like frostbite, you know. Just keep your feet warm and dry, watch to see if anything else happens. But that was basically it. And so I'm like, but it's July, right? Frostbite in July, like it just didn't make sense to me. And I thought that's and, you know, they did a very thorough exam. They took loads and loads of blood, and nothing really popped up at that point. So it was very early. Whatever was causing it was very, very early in its process, so there wasn't much to diagnose then. But I continued, and I sought out another rheumatologist, and I stayed with that doctor for good 10 years or so, seeing her about every two to three months, she'd take up to like 1314, vials of blood every two months, doing the full autoimmune disease panel on me, every test that they know to man for autoimmune disease, trying to figure out what my symptoms are pointing towards. And over that period of time, I had developed more and more symptoms outside of just the Raynaud's and what was known on the feet is called chillblains. So aside from those two issues, I started developing joint pain, more skin related changes. So my fingers became tight, as I said. I had some swelling in my hands, you know, just a number of other things that just seemed, again, really out of character. I couldn't figure out how they related to one another, if they related to one another, and neither could by doctors to that point. And so it probably wasn't until around 2017 when I started experiencing some internal symptoms. So not just external based symptoms and pain, but I was having some difficulty with swallowing and reflux, and my esophagus would spasm whenever I swallowed. It was very painful, and that, again, was all very new to me. I decided to change doctors at that point to try to figure out what's what's going on. Like, spend 10 years, we should have something now and, yeah, solid, yeah, whatever this is, is an internal now. It's a systemic issue. So we had been talking about the idea of a diagnosis called scleroderma, and it was something that had been on my mind pretty much from almost day one, once, once I had the ray nodes and the tightness on the fingers, I knew exactly what it was, but it just took a long time to get docs to agree and start, you know, really exploring that for a diagnosis for me. So I, yet again, changed doctors and found a physician that was wonderful. She also agreed with me. She says, Yeah, I think you do have symptoms of scleroderma, but it's not fully presented yet, so can't really officially diagnose you, but she said, I think you should get some testing. Let's look at your esophagus and your swallowing, and let's do all these different tests, which I did. And then she recommended going down to Yale, which had a new scleroderma program that was just starting in 2018 and so ultimately, that's where I ended up getting diagnosed with scleroderma, you know, shortly after that, and you know, have since continued my care there. I've got a lot, a lot of doctors now. I've got a lot of problems, unfortunately, and it's continued. The diseases continue to progress. It's affecting my heart, most recently, my lungs, my GI tract, so there's, there's a lot going on, and there's, unfortunately, with many autoimmune disease, there's not a ton available for treatment. It's kind of hit or miss sometimes.

Nancy Barrow: 9:32

And some of the treatments can be worse than the disease.

Melissa Marquis: 9:35

Yeah, for sure and some of these were. I had a meeting last night, actually, with two of my physicians, based on some recent tests that I've had, and trying to figure out, at what point do I start immunosuppression therapy, which is kind of a mainstay treatment for autoimmune disease, because at its core, autoimmune disease, no matter which type it is, is an overactive. Immune system. And so your body gets triggered by some exposure to something, whether it's a virus, an infection, some sort of a chemical exposure, or other environmental exposure. And it kind of can almost, sort of like turn on a gene. It's almost like a light switch turns on in your body and says, Oh, hey, your cells now I'll look foreign. So let's just go attack you. And so the whole goal with immunosuppressant therapy is to reduce that overactive burden that your body has and try to calm it down, and then hopefully reduce the inflammation.

Nancy Barrow: 10:34

What was the most frustrating part of your journey for you?

Melissa Marquis: 10:39

Not being believed. You know, I spent many, many years, as I said, I spent 10 years almost, with one doctor. She knew I was a nurse. She knew, you know, I asked her all the right questions all the time, and I got dismissed a lot. You know, she would answer some of the questions, talk around them, sometimes just blatantly not answer. You know, I can understand that if you don't know. I mean, rheumatology is a very difficult field to be in because there's often a lot of unknowns. I'm just the type of person that I would much rather appreciate you telling me, Listen, I don't know yet, or we don't know yet. As a field, you know, research hasn't advanced that far. Tell me that, rather than just not answering the questions, right? So I had a lot of that unfortunately, and I had seen a physician at one point just before I went to Yale to the Scleroderma program, I chose to go up to Boston, at one of their major universities, to their scleroderma program. And so I brought all of my documents there, gave him everything, all the tests and studies that have been up to done up to that date, and he essentially looked at it, and he says, Okay, well, you're obviously very detailed and organized, and, you know, very thorough, and, you know, putting all of your stuff together, but you're leading me down the path of diagnosis that you want. You know, I just, I stopped for a minute and it, it took a second to register, because I've never been spoken to like that before, where somebody just blatantly came out and said, you want this like you're crying sick, in essence, is what he was telling me. He was totally gaslighting me. I was so mad at him and so angry. And he ended the appointment. He's like, Well, I'm not changing your diagnosis. That's not what you have. You don't have scleroderma. You know, if you want, you know, Connecticut's not that far away. You can continue to come up here, like, once a year, and we'll see if anything changes. I was like, No, yeah, absolutely not. I'm not wasting my time on you. I'm going to go somewhere else where they do believe me. And sure enough, I went to Yale, like, three months later, here I am, yeah, scleroderma, with a whole host of other issues.

Nancy Barrow: 12:35

Being in the medical field, that must have been really frustrating, because you you're right, and to be dismissed by someone.

Melissa Marquis: 12:42

Well I think, as any professional, you know, when you're engaged in your own field with other professionals, you expect that there's some level of camaraderie and understanding, mutual respect, right, even if you're not at the same level of that as that person might be. So you know, Doctor has had way more education than a nurse goes through. But yet, don't dismiss what I know. I know a lot, and I know a lot of my body is working and operating or not working, as the case may be. And so like, yeah, it's extremely frustrating. So I think for me, that was the hardest piece to manage and to deal with. And then, you know, it translates over. It's not just the healthcare providers that dismiss you. I mean, you said it at the start of the program, and I know there was no intention behind it, but you said, Oh, you look great, good. I'm glad that I look great. I don't want to not look great. But at the same time, most days, I don't feel great. And so it's living with autoimmune disease. They are invisible, often, more often than not, and so it's hard to get that level of, I don't know, empathy or just general, basic kindness from people if I can't physically do something, or if I am having a really bad day and I can't go to work and I'm missing time, but then I go in the next day, and I look like I do now. I look totally fine. You start to hear things, you know, people start to talk, or you start to hear, you know, gossip or what have you where you see expressions on people's faces like it hurts, you know, don't think it's done out of a malintent or anything. I think it's just, you don't know what somebody else is going through

Nancy Barrow: 14:19

Has it changed you as a nurse?

Melissa Marquis: 14:21

Yeah, for sure. You know, I'm definitely more empathetic. It's given me a new appreciation for all the things that my patients dealt with, especially my chronic disease. Patients that I used to take care of.

Nancy Barrow: 14:33

Tell me about Invisible and nurse turned patients resource to living well with autoimmune disease. When did you decide I need to write a book about what I've been through so I can help other people. Or was that your motivation?

Melissa Marquis: 14:45

Yeah, it was. And it came up really suddenly. I never really had any intentions of writing, of being an author. The idea sort of popped in my head about five years ago of writing something i. Because I do like to journal, and I like the process of writing. It's I find it cathartic and, you know, whatever is going on, but never really thought I had anything of value or importance to say or to share. You know, I'm not much of a storyteller, so I knew it wasn't going to be a novel. So, you know, just trying to, like, way back in the recesses of my mind. You know, it's just a fleeting thought one day, and then several years later, I had just finished reading my Bible, and I was just kind of praying, just that, just this thought came to me, and you know, it felt very much like something from God just telling me, okay, you do have something to say, and actually, this is what I want you to write about. And so, no joke, within 30 minutes, I had the entire book, the structure of the book, outlined, chapter by chapter. I had the title done like it was instant and it could only come once I had received the diagnosis and finally felt validated and seen and and that's what I needed, having gone so long and struggled so much with getting the care that I needed, including the treatments that I needed, and I knew how to navigate the healthcare system and how what to ask and who to see, and I did all the right things, and yet it still took me over 13 years, or around 13 years, to get Some sort of a diagnosis, and it's just like, well, shoot, what do other people do that have none of that background that I have and maybe don't know that they can speak up and ask questions and or feel comfortable in doing so? And so my main point with this book is to empower people to educate them a little bit about what autoimmune disease is, what it does to the body, regardless of which one it is. And then I use a lot of examples from my own journey, tips and recommendations, strategies, anything that I learned along the way that can't be found by Google, you know. And I just, I really longed for a singular resource that I could thumb through when some new symptom popped up and I couldn't tell if it was connected to this one or to what was what I was feeling this day. And so I can put that together. You know, that's pretty easy. So I, yeah, I had the whole thing sketched out. I mean, I wrote the book in probably about six months. It took a year plus for it to actually go through the publication process. The really valuable portion of the book is I do a lot of education on self advocacy and teaching people how to be a better self advocate. And if they can't do it, then how do they get somebody in their corner, some family friend, somebody that they trust and support, that supports them, that can stand in for them. And so give a lot of recommendations on how to do that, and sharing resources and such. And then I actually interviewed my doctor at one point to get a physician's perspective on okay, if you're newly diagnosed or going through the diagnosis work up stages, okay, so you're going to see the specialist for the first time. Like, what's important from a physician standpoint? What do you wish the patient would bring or would tell you about? So I felt that that was really important for people to understand. And then I interviewed, I think it's four or five patients that had various autoimmune diseases. Asked them the same set of questions on just living life and how to live the most well balanced life as possible. You know what? What are the go to things that they use and or employ to help them get the most out of their life.

Nancy Barrow: 18:44

And have you gotten feedback from your book? Have people read it and said, Hey, this really helped me?

Melissa Marquis: 18:48

Yeah I hear from a lot of people that have read it, mostly people that I don't know that find me you know through different podcast interviews and you know through Facebook and different support groups that I'm on in online. And you know, I get lots of messages indicating, oh my gosh, it feels like you're talking about me, but also to me. And so there's definitely that sense of validation on the other on the readers part, so they're seeing it, they're reading it, and they're hearing, oh my gosh, this I'm not alone. There is actually somebody else that went through something so similar, you know, yeah, she still has some struggles, but she's still doing it like and she's kind of come through, and she's, you know, giving back and trying to help. And so it's, it's helpful for me to hear that feedback, because it also validates me and the thought that I had, you know, kind of coming up through all of this that, gee, I wish there was this singular resource. Well, now there is, and so I, I hope that it continues to get shared, you know, in mass. You know, really would love it to. Go out to the general population and the public so that anybody it's not just meant for patients. The book is really meant for anybody. You don't even have to have autoimmune disease, because the so much of the strategies and the information contained in it can translate to many other diseases. And it's really helpful for family members as well, because I think often patients, individuals that live with these chronic diseases, their families, they don't they don't understand again, unless you're living with it, and you're in my shoes, you don't know it what it's like. You don't know how hard it is on a day to day, or sometimes even hour by hour basis. And so, you know, I can tell you till I'm blue in the face, but until you actually experience it firsthand, it's really hard to grasp that. And so a lot of family members, I think, obviously, really good intentioned and want to help their loved ones as much as they can, doing whatever they can. But often, on our end, on the patient side, we almost don't know what to tell people that we need. And I know that that, for me is really challenging, like I don't I don't generally need a lot of physical help yet with things, certainly I would appreciate it. But, you know, I'm very strong, I'm independent, and I just do what I have to do and carry on. But I get that question often, I wish there was something I could do. What could I do for you? And I don't know what to tell people, yeah, so, like, it's the book. I talk a lot about that within the book, like, just be there, just to try to support them, no matter how how it looks for that person, just do something nice.

Nancy Barrow: 21:46

Like, yeah, no, just get dinner, yeah. Bring something

Melissa Marquis: 21:51

To the floor. Like, yeah. That person doesn't have to think about it.

Nancy Barrow: 21:55

You know, 80% of autoimmune diseases affect women. Do you think that that's a barrier for, you know, the medical field, that they don't know a lot about it, and so they just kind of say, oh, it's in your head, or, you know, it's not what you think it is. You just want that diagnosis. Do you think there needs to be better training, maybe in med schools?

Unknown: 22:19

I think there's a lot of components to this, you know, it's something that they're still studying. And you know, that's a new statistic, or more recent statistic, where 80% are female, and they're just now starting to identify why. And again, there's brand new studies coming out that it may be linked to the fact that women have 2x chromosomes versus men who have one, and so we're already sort of doubly, sort of doubles our risk, in a sense, you know, if you're just looking at it from that standpoint alone. But there's other factors that go into it, and women, I think, historically, have been dismissed in a lot of areas of our lives, not just physical and, you know, from a medical standpoint, and especially from the opposite sex. And so, you know, a lot there's, there's a lot of male physicians, and so as a female patient going to a male and you're giving them very vague symptoms that can be attributed to a host of other problems, and often very simple things, such as just being tired. You know, it's that time of your month, so you're a little more tired, you're a little more cranky, maybe where you have, you know, a few other things going on. It's like, okay, well, so many of these symptoms can be attributed to so many other things that it's really hard to nail down. And so I think, unfortunately, a lot of times, the default from people is saying, oh, yeah, you're just blah, blah, blah, or you're just x, you know, you just need to, like, take a day off, or just, you know, you need a mental health day and, or, you know, maybe, do you have a counselor? Maybe you should go talk to somebody and, you know, so they kind of dismiss it, or lump it into this psychological side, which, yeah, maybe there's a component to it, but that's certainly not the entire reason. That's not what brought them there to you that day.

Nancy Barrow: 24:19

Right? That might be something that you have to deal with because you have an autoimmune disease.

Melissa Marquis: 24:24

Yeah, yeah, for sure.

Nancy Barrow: 24:25

So, so let's talk about that. Has it affected your mental health and well being and and have you sought out support groups or mental health services?

Melissa Marquis: 24:33

100 % yes, yeah. I actually, I talked that's probably that. And self advocacy are the two main topics in the book, if you're diagnosed with a chronic disease, you really should be engaged with somebody that you can speak to, whether it's a counselor, a therapist, a best friend, somebody in your life that you can speak very honestly to and share your feelings, and hopefully they can impart. Wisdom and strategies to help you move through these, especially, you know, like an illness like mine, where there's, it's affecting the entire part of my body, like my whole body is, is ultimately affected by this, but it's not all at the same time. And so it's, it's very much of a, progressive Oh, okay, well, I, let's say, two years ago, I got diagnosed with pancreatitis, dealt with that. Now I have cardiac issues, trying to deal with that, and then I have some other GI issues. Like, it's just this, it's a seesaw, it's back and forth. And, you know, this is just the new normal for me. And again, it's part of that acceptance piece as well. Like you, yeah, you can't move forward if you don't accept the fact that your body's fighting. Recently, though, I've needed to take I just recently took off a little over two weeks of time to deal with some treatment, medication, changes that we're doing, and so I wanted to allow my body complete rest from everything and not think about work, not think about other stressors that might impact how that treatment is going to work on me. And so that's probably something that I will likely need to incorporate. You know, moving forward, unfortunately, as my disease progresses, it's it's not going to get better. And so I know that, and you know, not necessarily okay with it, but at least I recognize that this is something that I'm going to have to deal with. And so, you know, I have short term disability, I've got access to the Paid Family Leave Act, or the the Connecticut paid act leave. Let's get those, the words mixed up there, but so just having resources, FMLA, obviously, is another avenue. So, you know, I've got again, you know, the support from my doctors and from my employers that you know want me to use those resources.

Nancy Barrow: 26:59

Yeah when we first initially talked I told you about Connecticut Paid Leave and that you can get up to 12 weeks a year for your chronic health conditions, which you can take every calendar year, obviously, which you say you're not going to get better. So you can take them for surgeries or hospitalizations or doctor visits. And there's the big block leave, where, if you did have surgery and you need those 12 weeks to recover, you can, or you could do intermittent leave. You take a day here a day there, or reduce schedule leave, where maybe you take every Tuesday afternoon off for your mental health or support group visits. And how valuable are services like Connecticut paid leave to you and caregivers of someone with an auto immune disease?

Melissa Marquis: 27:38

Yeah I think it's huge, because then you're not worrying so much about well, especially if you're in a job that doesn't offer you paid time off. If you're working part time, like a lot of people are, many people that that have a chronic disease don't have the ability to work full time anymore, and so if you don't have that ability to take time off and get paid for it. Having this as a backup to supplement your income is huge.

Nancy Barrow: 28:09

yeah so it takes a stressor away from you, you know.

Melissa Marquis: 28:12

Yeah for sure. And so that's one less thing that you have to worry about, which then you can focus your energies more on getting better. And so it's great for, like, you said, anybody that's going through anything, yeah? And I love the the ability to be able to use it if, if you're the caregiver as well, like, that's not, they don't often have that as an option. Yeah, that's great. It's wonderful to use it for that. So yeah, we're, we're grateful that we've got that as a resource.

Nancy Barrow: 28:45

You know that Connecticut Paid Leave is here for you, so I know that you said you had to take two weeks off. So make sure you start your account.

Melissa Marquis: 28:54

I was playing with it actually before we started. So I'm gonna definitely put in for a new application, great and get started and just have it ready to go for when I

Nancy Barrow: 29:05

Go on our website. Ctpaidleave.org. It's need it. very easy to do. So I hope that we can help you. I mean, really give you some peace of mind while you're trying to heal. You know, this chronic disease that you have, this autoimmune disease that you have is is a tough one, so you got to be kind to yourself and use these resources that are available for you.

Melissa Marquis: 29:23

Yeah? Absolutely. Thank you.

Nancy Barrow: 29:25

I want to thank you, Melissa Marquis for coming on The Paid Leave Podcast and telling your story and hopefully being on here and having your book Ready may help someone on their journey through an autoimmune disease, and that's all you can hope for, right.

Melissa Marquis: 29:39

Absolutely, yeah, for sure.

Nancy Barrow: 29:41

I hope your health journey with autoimmune disease is much easier, and I wish you good health for your future.

Melissa Marquis: 29:47

Thank you. I appreciate that very much.

Nancy Barrow: 29:50

For more information or to apply for benefits, please go to ctpaidleave.org This has been another edition of The Paid Leave Podcast. Please like and. subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.