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Patient Stories, Podcast

From Frustration to Inspiration: Melissa’s Journey of Self-Advocacy, Diagnostic Purgatory and Life with Scleroderma

2 months ago
71 min read
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Summary:

In this episode of The Arthritis Life Podcast, Melissa Marquis, a nurse from Connecticut, shares her journey of navigating a 17-year battle with autoimmune diseases, including a decade of undiagnosed symptoms that later revealed undifferentiated connective tissue disease and scleroderma. 

Cheryl and Melissa discuss her experiences in the healthcare system, driven by frustration to become a self-advocate. This led Melissa to write the book Invisible: a Nurse Turned Patient’s Resource to Living Well with Autoimmune Disease, aiming to provide validation and resources for others facing similar struggles. 

Cheryl and Melissa also touch on the challenges of advocating for oneself, misconceptions in the medical field, the impact of invisible illnesses, and the importance of finding purpose and joy while living with chronic conditions.

Episode at a glance:

  • Melissa’s Journey: Cheryl and Melissa discuss Melissa’s long diagnosis journey.
  • Navigating the Healthcare System: Melissa shares what it was like to navigate the healthcare system as a nurse turned patient.
  • Self-Advocacy: Cheryl and Melissa discuss the importance of self advocacy. 
  • Melissa’s Book: Melissa shares her journey of writing her new book, Invisible: a Nurse Turned Patient’s Resource to Living Well with Autoimmune Disease.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Melissa  Marquis

I am a nurse as well as an individual living with a rare autoimmune disease called systemic sclerosis. It took me almost 13 years to receive that diagnosis after years of searching and seeking different doctors. Despite knowing how to advocate for myself and how and where to research my symptoms, I seemed to fall short in getting the answers I so desperately wanted. So I decided to write a book with all that I learned and information that I amassed over that time to share with individuals with autoimmune disease. This was all done in an effort to hopefully help make their journey a little bit smoother than my own.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:05] Cheryl Crow: I’m so excited today to have Melissa Marquis here to share her story. Melissa, can you let me know a little bit about yourself? Like where do you live and what is your relationship to arthritis and autoimmune disease? 

[00:00:30] Melissa Marquis: Sure. Absolutely. And thank you, Cheryl, for having me on, and I’m so excited to be here and share more about my story and the book that I’ve written.

[00:00:38] Melissa Marquis: So I live in Connecticut and I am a nurse. I’ve been a nurse for, gosh, 26 years now and I’ve been a patient for about 17 of those years. And so it’s, I’ve got a, a bit of an interesting story. And so my, my journey sort of began around 2008 with what, at the time I felt were [00:01:00] very random, seemingly random symptoms that didn’t make sense one way or the other.

[00:01:05] Melissa Marquis: None of it connected. They were just very like disparate symptoms. I had rayons that developed out of nowhere in the in the summertime. And, I had some other skin related issues and, things just kind of kept popping up after a short period of time. And so I went to the doctor pretty quickly and tried to identify what it was, and I knew that it had to be an autoimmune disease, so I went straight to a rheumatologist.

[00:01:31] Melissa Marquis: I didn’t even go to my PCP and so I asked for some recommendations from colleagues at the hospital I was working at. And they basically, when I got to the doctor’s office, they took tons of blood and ran all kinds of tests and said, everything looks good. You look good. So, yeah, we’ll just follow you and, and see if something pops up.

[00:01:53] Melissa Marquis: And, I, I wasn’t thrilled with that answer, but I kind of knew going into it that that’s what they’d say because it [00:02:00] just didn’t seem like there was much there. And, fast forward 10 years here I am still going to see a rheumatologist every three months and they keep doing the same exact thing every three months and taking lots and lots of blood and, trying to identify what’s going on.

[00:02:15] Melissa Marquis: Meanwhile my symptoms have continued to progress and I’m starting to see patterns and the flares that I would experience. And so, at, at about that 10 year mark, I changed doctors entirely. I was getting frustrated. She wasn’t answering me and giving me information that I had wanted to hear and she just sort of dismissive. And so I saw a different doctor. 

[00:02:37] Cheryl Crow: And just, just to clarify, so in 2008 you kind of said, I have all these random symptoms but they might be connected ’cause that’s how autoimmune stuff is, it’s whack-a-mole popping up all over your body. 

[00:02:48] Melissa Marquis: Right. 

[00:02:48] Cheryl Crow: You were still being, able to visit them every three months or Oh, wow. That is 

[00:02:55] Cheryl Crow: unusual. 

[00:02:55] Melissa Marquis: She told me from my first appointment, she’s well, I can’t diagnose you with [00:03:00] anything particular because nothing’s showing up, but I do think that you have some level of autoimmunity. So she said your, your immune system is not quite right, but it hasn’t progressed enough for us to really kinda nail it down.

[00:03:12] Melissa Marquis: And so I, I stayed in that boat really for 10 years almost. And it wasn’t until going to that second doctor that very first visit, she said, well, you have undifferentiated connective tissue disease. And nothing else had changed, but it was just a different person hearing the collection of all the different symptoms over those years and watching to see, I had a couple of lab values that were abnormal, that were more lupus like indicators.

[00:03:41] Melissa Marquis: And so they, I think that’s kind of what tipped them off or, or maybe moved the needle enough to say, yes, you do have something going on. And then around that same time, I started developing some systemic symptoms. So I was having a lot of GI issues at the time, and I probably had always had [00:04:00] some level of GI distress, but just didn’t attribute it to anything.

[00:04:05] Melissa Marquis: Was always healthy. But it wasn’t until those got worse that I, I start, I actually started to talk about them to my doctor, instead of just ignoring it. And she’s oh yeah, we, we need more testing. And then that’s kinda what got the ball rolling with that. And then, again, about three years later, I finally was able to get into a scleroderma program in Connecticut where they quickly diagnosed me there with scleroderma.

[00:04:34] Melissa Marquis: But it took that long, and it’s, it probably was maybe a few months into my symptoms, first beginning all the way back in 2008 that I knew what I was gonna develop. I just knew, as a nurse, I’d seen it before, only once, but I still, I like, it just was kind of an image wherever embedded. So yeah, that’s my journey there. 

[00:04:55] Cheryl Crow: Well, and what’s you’re, you’re not the first person on the podcast that has had [00:05:00] undifferentiated connective tissue disease, but I, I believe you’re from, if my memory serves, which is not always perfect. But you are the first person to have a scleroderma on the, on the podcast.

[00:05:11] Cheryl Crow: So, I, first of all, thank you for sharing your journey and I’m so sorry it took so long. I mean, so many years and not just a long time, but your, it wasn’t just like stagnant time. It was like you’re actively trying. It was persistence and sometimes the diseases do take a while to manifest fully to the clinical point, but it’s still so frustrating.

[00:05:34] Melissa Marquis: Definitely. 

[00:05:34] Cheryl Crow: But if we could take a moment just to let the audience know, what is scleroderma, what does it feel like to you? 

[00:05:41] Melissa Marquis: So scleroderma is kind of a broad term. So there’s at least four different types of scleroderma that you can have. There’s two main subtypes. There’s a linear, which just means that you literally have like lines on your, on your skin.

[00:05:55] Melissa Marquis: And there’s a particular type that can cause it’s called en coupon de sbre. It’s a French name, but [00:06:00] it’s basically like a sword mark across your forehead. And it’s, it causes fibrosis at the heart of the disease, whether in whichever type you have. And so there’s an overproduction of collagen in your body or immune systems attacking itself.

[00:06:14] Melissa Marquis: And because of that, it thinks that it’s being injured and so collagen is part of the cell structure that forms scar tissue as a healing property. And this overproduction of collagen ends up building basically layer on, layer on layer of new scaffolding, in essence within your tissues. And with the systemic versions, it does the same internally in your organs as well.

[00:06:40] Melissa Marquis: And so it causes that fibrosis of the skin, so the, the thickness and the tightening of the skin to varying extents depending on which type you have. And then, it can cause damage to your blood vessels same type of thing, causing that fibrosis and stiffness and then to all your smooth muscles [00:07:00] and so that it doesn’t contract.

[00:07:01] Melissa Marquis: So a lot of, there’s almost every patient with scleroderma has severe or could have severe GI disease anywhere from your esophagus, from swallowing. Your esophagus muscles just can’t contract because they’re all smooth muscles. So you don’t control that, but that’s what aids in getting food and liquids down and propels them into your stomach.

[00:07:23] Melissa Marquis: And then the rest of your GI tract has the same type of structure. And so, there’s a lot of motility issues. And in patients with that, with that, due to that smooth muscle damage. And then it, lastly, it can affect your nerves as well and cause damage. So you lose sensation or you have a lot of pins and needles and pain.

[00:07:42] Melissa Marquis: So that at a heart is what the disease is. So you’ve got the, the linear version and then you’ve got the two, there’s two separate types of systemic sclerosis. That’s the the systemic name for it. And that’s what I have. I’ve got the limited type, which just means that I have limited skin involvement, but I have all the [00:08:00] internal organ involvement,

[00:08:01] Cheryl Crow: yeah. And scleroderma is similar to, I think it has a little bit of a PR issue in the same, similar to Sjogren’s, which is, first of all, most people have never heard of it, but if they have heard of it with Sjogren’s, I think it’s just dry mouth and dry eyes and with scleroderma, they think it’s just tightening of the skin of the skin is not fun. And now it doesn’t help you function, but like you’re mentioning, it’s much more intense than that. 

[00:08:24] Melissa Marquis: Yeah, absolutely. And it’s a very, it’s a rare disease. Unfortunately, a lot of autoimmune diseases are on the rarer side with the exception of lupus, MS, diabetes, some of the ones that are more mainstream that you hear about. And so unfortunately, like you said, it’s, it’s just not getting that, I guess community level recognition, and therefore it’s not getting the awareness, it’s not getting research funding, and so it’s it’s difficult not just living with the disease, but you know, on the physician end of the, the healthcare end, [00:09:00] trying to figure out how to, how do we stop this?

[00:09:02] Cheryl Crow: Yes, yes.

[00:09:04] Melissa Marquis: And it’s hard. 

[00:09:05] Cheryl Crow: Yeah. And I didn’t mean, I, I just realized I, I wanna, I didn’t mean to truncate your diagnosis story, I’m curious. 

[00:09:11] Melissa Marquis: No, it’s okay. 

[00:09:11] Cheryl Crow: What it, yeah. What it, now that we’ve explored what it kind of is, what did it feel like to you in 2021, 13 years of doing the math right after your initial, a first appointment with a rheumatologist. What did it feel like to finally get that diagnosis? 

[00:09:28] Melissa Marquis: Validation.

[00:09:29] Melissa Marquis: I, like I said, I knew really almost from day one almost before any of my doctors did. You know that first doctor that I saw? She looked at my fingers and my fingers have always been long narrow and kind of tight and shiny, but I never thought about it before because it never caused me problems.

[00:09:48] Melissa Marquis: I have full mobility of my hands. I never had any significant issues. But she, I remember her remarking, anytime I would go into her office and she’d kind of stroke my fingers [00:10:00] almost, and I’m like, what are you looking at? And she, I said, are you looking at the thickness of my skin? She’s yeah.

[00:10:06] Melissa Marquis: Have they always been like this? I was like, I guess, I don’t know. They’re my fingers. I didn’t pay attention. And thinking back, I’m, I think all along that’s scleroderma was on her radar. But again, with scleroderma and many other autoimmune diseases, most patients will have a positive blood type called an ANA, which is an anti-nuclear antibody.

[00:10:29] Melissa Marquis: And it’s just basically your body in producing an antibody that is indicative of some sort of an autoimmune disease and, and that your body’s attacking itself. And I always was negative from day one. And so for scleroderma patients, there’s like maybe 95% of the population has a positive ANA.

[00:10:53] Melissa Marquis: So it’s super rare to not have an a NA that’s positive. And so mine was negative [00:11:00] for about 14 of those years, even before my diagnosis. And so that was really the hesitation, I think for a lot of the docs that I saw was that that one blood test was negative. 

[00:11:14] Cheryl Crow: But that’s just so, I, sorry, this is one of my soap boxes, but you know, it’s, if there is an exception to every rule, especially in autoimmune and people, it’s a misnomer with rheumatoid arthritis, which is what I have, that you have to have a positive rheumatoid factor. In fact, only 30 to 40% of patients have a positive rheumatoid factor when they’re first diagnosed. Eventually, about 80% will have it.

[00:11:37] Cheryl Crow: But then if you’re always playing the odds, then every, single a hundred percent of the people in the rare category are never gonna get help. I don’t know. I’m preaching to the choir to you.

[00:11:46] Melissa Marquis: Yeah, a hundred percent. Yes. It just makes, and even when, like I, I did find the test positive and the type that I tested positive for is not common again in scleroderma.

[00:11:58] Melissa Marquis: And so I, I [00:12:00] was so excited. I was like, yes, I’m finally positive. I sent a message to my doctor at Yale. I was like, does this mean what I think it means? Like I was really just I needed that validation. Like I couldn’t stand being in that quasi, you have something. It’s, here’s this really kind of amorphous definition of undifferentiated connective tissue disease saying, yeah, you’ve got a disease.

[00:12:27] Melissa Marquis: We don’t fully know what it is. You haven’t presented enough or it hasn’t manifested enough, but yet here we are, and so it’s just I needed something more beyond that ’cause I knew what I had and it was just, it was so frustrating to be in that spot for so many years. And then once I got the diagnosis, it just was it was validation, it was relief mixed with, oh crap, now I have to live with this.

[00:12:54] Melissa Marquis: And what does this actually mean for me? What is this gonna do to me down the line? Obviously it’s progressive [00:13:00] illness and it’s, unless a cure is found there, it’s not likely to get much better. I, I’ll probably have plateaus, but that’s maybe the extent of it. I don’t know, I have no, I can’t predict, how things are gonna go, but, so it was a lot of just kind of, identifying what emotions I was feeling at that time and working through each one of them 

[00:13:21] Cheryl Crow: A hundred percent. I honestly, if I had to choose two words to describe my feeling at diagnosis, it was also validation and relief. So I really, really relate to you.

[00:13:32] Cheryl Crow: And then yeah, mixed with a little bit of fear, but I think that’s something that often I’m, often I’m asked to talk. I, I love talking publicly about my, my patient story and everything, but I think often I am admit I’m a little hard to interview sometimes as I feel like the reporters are often wanting there to be this very linear journey of I felt really sad and now I’m happy and I’m thriving with arthritis.

[00:13:54] Cheryl Crow: I’m like, it’s not that simple, but, it’s not that simple. 

[00:13:56] Melissa Marquis: No,

[00:13:57] Melissa Marquis: I actually, I was talking to somebody about this the other [00:14:00] day and I said, it’s, it’s very much like a child’s drawing where like a three-year-old drawing something and it’s all these squiggly lines and all these different directions.

[00:14:08] Melissa Marquis: I said, that’s my journey. 

[00:14:09] Cheryl Crow: I love. Well, and, and you talked about you couldn’t stand being in that kind of amorphous, vague diagnosis. I call that diagnostic purgatory, where they’re like, could be, this could be okay. You’re like, okay, we are partially validated because they know it’s something, but you can’t grasp on to any, especially from a, from a academic standpoint or clinical standpoint as a nurse, that yeah, you wanna fit the right treatment to the right diagnosis. Yeah. And so how do you, it’s like throwing darts at a, a really, really big dart board versus when you get your diagnosis right. You have a smaller dart board.

[00:14:46] Melissa Marquis: Yeah. And I experienced, well, I, I was still trying to get the workup portion to get the diagnosis for scleroderma, holding that undifferentiated diagnosis. While that alone was [00:15:00] validating for me after 10 years of searching for something, anything. I got that. But then, one of my doctors, my doctor that had actually diagnosed me with that, she moved.

[00:15:09] Melissa Marquis: And so I had to see somebody else coming on into her practice and he didn’t agree that that’s what I had. And he is you don’t have this. It’s, that’s not a real diagnosis. Well, like he is just go, I was like, you’re a rheumatologist. What are you talking about? I’m like, it is here’s the research.

[00:15:26] Melissa Marquis: And even now my, my doctor doesn’t want to let go of that diagnosis. She’s you still. She’s even though you’ve fully pre presented and transitioned into scleroderma, you still have symptoms of other autoimmune disease and none of them, can we fully identify those yet either, and so I know I’m gonna start collecting autoimmune diseases. It’s common with us, unfortunately. And but I told her, I was like, I just, I hate the term because undifferentiated is so vague and it just doesn’t mean anything and people just dismiss it entirely. [00:16:00] And she’s well, who does? I was like, doctors.

[00:16:03] Melissa Marquis: She’s really? You’ve experienced that? I was like, oh my God. Too many to count. Yes. 

[00:16:08] Cheryl Crow: Yeah. It’s like fibromyalgia, certain, certain diagnoses just have a bad reputation for me. For a while I didn’t want my doctors to put anxiety disorder on my chart either for, for similar kind of stigma related reasons.

[00:16:22] Cheryl Crow: Not that they would think that because I had an anxiety disorder, it meant that I didn’t have RA. Like I think most people could see both of those on a chart and be like, yes, those are both. 

[00:16:30] Melissa Marquis: Sure. 

[00:16:31] Cheryl Crow: Valid. But I didn’t want them to, like in my mind, my, this is not true now at 43, how I understand my brain and that I do have, I do understand that I have generalized anxiety, but back then it felt like I was not anxious until I started getting sick.

[00:16:47] Cheryl Crow: Anyway, but I understand that feeling deeply of not wanting that stigma and needing the validation.

[00:16:54] Cheryl Crow: I really wanna get to stop myself from talking, get to your book ’cause it’s fantastic. But I first I wanna [00:17:00] quickly give you a chance – what treatment, are there any treatments for scleroderma?

[00:17:05] Melissa Marquis: Yeah, there, there definitely are. Like with most autoimmune disease, kind of the mainstay of treatment is some sort of an immunosuppressant or disease modifying agent to suppress or reduce your immune system from being hyperdrive. And so, currently taking two of those medications, so I’ve been on Plaquenil, which is hydroxychloroquine.

[00:17:27] Melissa Marquis: It’s a common lupus medication that they, that they can use and they use it for other autoimmune disease as well. So I’ve been on that actually since 2008. So that was one good thing about my doctor, even though early on, I didn’t have a diagnosis, and it’s not that she dismissed me entirely, but she at least had the foresight to actually try to slow things down.

[00:17:51] Melissa Marquis: And I think maybe if she hadn’t done that, I probably would have more quickly developed those additional symptoms instead of taking [00:18:00] 10 years, maybe it would’ve taken five, I don’t know. But so anyhow, I’m on that. And I also take methotrexate, that’s the newest addition because I now have new scleroderma cardiac disease.

[00:18:10] Melissa Marquis: So my heart is very swollen and inflamed right now. So we’re trying to calm that down pretty quickly to reduce some of the symptoms I’m having. And then I’m not sure if that’s gonna be a, a treatment I stay on long term or if I tolerate it and I respond well to it, hopefully I can come off of it.

[00:18:29] Melissa Marquis: And then maybe only use it as needed moving forward. And then the other medications that they typically use because we all have developed Raynaud’s disease or phenomenon which is a circulatory issue affecting primarily your hands and your feet to cold into stress your fingers generally will turn white in blue and very cold, have no blood flow.

[00:18:50] Melissa Marquis: And so the, it’s really important to maintain that blood flow. So they put us on vasodilators to open up those blood vessels again. And there’s varying [00:19:00] medications that they can use based on the severity of that. And then, from a GI perspective, since a lot of patients have GI disease they’ll put you on a PPI, proton pump inhibitor or like a Prilosec or oh gosh, any of those types of over the counter or prescription.

[00:19:16] Cheryl Crow: Yeah, 

[00:19:17] Melissa Marquis: yeah. I can’t take them because, they can cause in, in many patients, especially with scleroderma, due to our motility issues, it can cause something called SIBO, which is small intestinal bacterial overgrowth. 

[00:19:29] Cheryl Crow: I’ve had that, sorry. Sorry. Your story, but it’s not fun. And by the way, just know if you are experiencing really, really extreme bloating and, and I then I wish I had known what that was and to ask to be evaluated for it earlier when that happened to me.

[00:19:45] Melissa Marquis: Me too . and I reduced for years. 

[00:19:48] Cheryl Crow: Oh, I’m so, so, yeah. Yeah. I just thought this, well, and I always thought, it’s so hard when I hammer, everything’s a nail. If you have gastroparesis, you’re like, oh, it’s just your gastroparesis, justis, so then you’re like, okay, but it could be two things exactly.

[00:19:59] Melissa Marquis: [00:20:00] So yeah, in terms of meds, I can’t tolerate any of the normal GI meds to help with the reflux issues that we all have. And so I usually will take, I take a lot of different herbal treatments or supplements to help from a more naturopathic standpoint to help with some of those GI complaints.

[00:20:18] Melissa Marquis: And then I rotate, I have to stay on cyclic antibiotics for my SIBO because it’s a recurrent progressive thing. And so it’s never gonna go away for me. And so I alternate between antibiotics and herbal antimicrobials every month depending, just so that I don’t kind of build up that resistance and just to give my body a break from different things.

[00:20:39] Melissa Marquis: So, yeah. 

[00:20:40] Cheryl Crow: That’s a lot. That is a lot. 

[00:20:42] Melissa Marquis: Yes, it’s a lot. 

[00:20:44] Cheryl Crow: As I said those words, I remember the first time a therapist ever said that to me and I just remember that validation I felt. Like, ’cause I was like, wait, I know it’s a lot, but an outside person saying it’s a lot who also like job is to listen to people talking about tough things in life so [00:21:00] I know it.

[00:21:00] Melissa Marquis: Yeah. It’s funny when I do these and I I, I start talk, talking about, all the things that I’ve gone through, all the different tests and medications and stuff. When I think about it on my own, I can compartmentalize it all. It’s oh, I’m just dealing with this today. 

[00:21:15] Cheryl Crow: Me too.

[00:21:16] Melissa Marquis: Oh, but when you like start talking about it, it’s oh wow, that, that sucks. 

[00:21:21] Cheryl Crow: Yeah. It’s so strange getting, I always, I joke, it’s kind of like talking, understanding and processing your own experience. Kind of like standing two feet away from like a Monet painting. It’s to you it kind of just you’re just like stroke by stroke.

[00:21:34] Cheryl Crow: It’s, or maybe it looks like a little bit of a mess, but when they’re 20 feet away, they’re like, it’s a lily pads. And you’re like, what? Oh, I didn’t realize.

[00:21:40] Cheryl Crow: So, before we talk about your book, one last question. What is your, if you don’t mind I didn’t prepare you for this question, but this hopefully is straightforward.

[00:21:48] Cheryl Crow: What is your nursing background in terms of what area did you work in or do work in? 

[00:21:54] Melissa Marquis: I was primarily pulmonary medicine and so I worked in a pulmonary adult pulmonary medical and step down [00:22:00] unit. 

[00:22:01] Cheryl Crow: That’s lungs, by the way, to people.

[00:22:03] Melissa Marquis: Lungs. Yeah. 

[00:22:04] Cheryl Crow: I was trying to like, define everything ’cause we just don’t know.

[00:22:06] Melissa Marquis: You just dunno. Yeah, exactly. Yeah, so I worked there for 11 years while a few years while I was in nursing school. And then I stayed on the same unit as a nurse. And then I transitioned and started working with kids in outpatient doing research and endocrine testing. So I learned a lot throughout my career.

[00:22:25] Melissa Marquis: But I, my passion was always working with cystic fibrosis patients. They were, we were the only adult CF unit at the hospital. And so I very quickly became super attached to them. I was close in age, I was a little bit older than them, and I just like, I was so protective of them and, at the time, this is going 20 years ago now, but at the time their life expectancy was only in their low thirties.

[00:22:51] Melissa Marquis: And so it was, it was a lot of working with them on end of life issues and just kind of navigating that with them. And for [00:23:00] whatever reason, I don’t know, I think just God gifted me with that ability to connect so personally with it, even though I had no experience with that yet. And now I, I still maintain contact with a few of the patients that are still alive at this point.

[00:23:14] Melissa Marquis: And just watching how they handled a chronic progressive disease that is fatal and scleroderma can be. I think that was the best thing to prepare me for living well with my disease because I saw them at their worst day in and day out. They were hospitalized for months at a time sometimes, and just their tenacity and will to live and desire to live and fight.

[00:23:40] Melissa Marquis: It was so inspiring. I like it’s, I can’t put it enough into, well articulated words to really indicate like how much that meant to me and how much that formed who I am right now living with my own illness like that. So, yeah. 

[00:23:55] Cheryl Crow: Well . Yeah, that’s, that’s extremely inspirational and hopeful.

[00:23:59] Cheryl Crow: In a way, [00:24:00] it’s karma in the sense that you gave so much to the, to support those children and now you are getting back some, or you’re getting a benefit to that, to yourself, to in terms of having learned maybe the coping skills and stuff like that. . Yeah. Well, and, and speaking of, paying it forward and such. You’ve written a book that I love the title, Invisible: a Nurse Turned Patient’s Resource to Living Well with Autoimmune Disease. 

[00:24:26] Melissa Marquis: Mm-hmm. 

[00:24:26] Cheryl Crow: What inspired you to write this? And I, well we, before I started hitting record, we already talked a little bit about it, but I would love to hear a little bit of the process of your kind of inspiration.

[00:24:39] Cheryl Crow: Yeah. If that makes sense. 

[00:24:41] Melissa Marquis: Yeah. My inspiration was frustration plain and simple. 

[00:24:44] Cheryl Crow: I love that inspiration via frustration. From the frustration to inspiration plot line. 

[00:24:50] Melissa Marquis: It really was, I mean, because my journey took so long and the fact that I’m a nurse, I know how to navigate the healthcare industry.

[00:24:57] Melissa Marquis: I knew what questions to ask. I knew which doctors [00:25:00] to go to. I didn’t delay seeking care like I did everything right. And it still took me 10 freaking years to get a diagnosis, and that wasn’t even, I say the real one but the one that is more significant for me. And so, it got, I got to thinking after I finally received the scleroderma diagnosis, I mentioned that I felt validated and relief and almost like I can take off that added weight, like the, the bricks and the, the weight of the world was on my shoulders.

[00:25:32] Melissa Marquis: And I felt at that point I could just take it off, shut it all off, and just breathe for a minute. And I thought, okay, well now that I have a minute to breathe, how can I help other people? That’s just, I’m, that’s my, that innate wanting to help, and so I thought, well, I really, for so long, all I wanted was a resource or resources that I could go to where I could type in, I have this symptom, this [00:26:00] symptom, and this symptom.

[00:26:01] Melissa Marquis: What does it mean? And I couldn’t do that with Raynaud’s, with fatigue and with skin issues. Like it just, oh, and joint pain. You type those in and you get millions of hits that don’t tell you anything because those are such common symptoms that overlap with any disease almost with the exception of Raynaud’s

[00:26:25] Melissa Marquis: But everything else can be attributed to the common cold, to cancer, to autoimmune disease, to a hangnail. There’s just so many things that it could be leaning towards. And so I wanted a resource for patients that are going through that same process that I went through where they can say, okay, let me.

[00:26:52] Melissa Marquis: Maybe there’s something that can help me connect the dots. ’cause that’s really what I needed. I needed to find a way to connect all the dots. ’cause I knew they were connected, [00:27:00] but I just couldn’t get enough data behind me to say yes and show it to my doctors and say, see, I told you. And so that’s what I wanted.

[00:27:10] Melissa Marquis: I wanted a resource that was both educational in nature, but not heavily, not overly I didn’t want it to be disease specific to my own, because it’s such a niche audience. I knew it wouldn’t gain traction, and I wanted to be able to help the most amount of people with it. And all of the things that I’ve learned and amassed over the years really can be translated across any illness honestly.

[00:27:36] Melissa Marquis: I mean, it’s the, the tools are all the same. It’s just the, the disease and the education, the information that might be different.

[00:27:45] Cheryl Crow: Yeah, 

[00:27:45] Melissa Marquis: I wanted that to come out as well within the book. And, and the, the secondary piece was that I wanted to share parts of my story to show that it’s okay to be vulnerable and it’s okay to be open.

[00:27:58] Melissa Marquis: And really [00:28:00] just showcasing what it’s like to live with this type of a disease. Because we hear all the time, well, you look fine, you or you look great or Why yesterday you went for a bike ride and today, now you can’t go to work. What’s, what’s that all about? There’s just, people don’t understand how to respond to somebody that looks normal on the outside, but they’re not.

[00:28:24] Melissa Marquis: And you see it with a lot with mental health issues and just trying to break that stigma and trying to reinforce to people, look, we are all going through something. It might not be medical, it might be something in your personal life, your work life, whatever it is. We all have something hard that we’re dealing with at any given day.

[00:28:45] Melissa Marquis: So just be nice. Don’t just think before you speak. And, and just, I don’t know, be 

[00:28:51] Cheryl Crow: I need to hear that. 

[00:28:52] Melissa Marquis: No, I tend to blur things up, but, well, not well. Yeah. I mean it’s, we’ve all been there. We’ve all said stupid things, but, just again, [00:29:00] that kind of friendly, gentle reminder you can’t judge a book by its cover, hence the title of the book, invisible.

[00:29:06] Both: Mm-hmm. 

[00:29:06] Melissa Marquis: So I really, I wanted people to feel, particularly patients or individuals living with diseases like this, I wanted them to feel that validation. I see you, I understand what you’re going through. Might not be the same disease. I might not feel exactly what you’re feeling. But I feel you.

[00:29:24] Melissa Marquis: I get it. I understand. I live it myself, every day. And so I just wanted it to be kind of an encouragement for them and to empower them to share their story, to share their information, and be maybe a little bit more open and vulnerable with expressing what’s going on in their life so that hopefully they can combat some of that dismissiveness that we all feel. So

[00:29:53] Cheryl Crow: that’s, that’s so needed, that’s such a needed resource. And yeah, I can’t tell you like having [00:30:00] run support groups for people with either autoimmune types of arthritis rheumatoid arthritis, psoriatic and ankylosing spondylitis. I, it’s like something that everyone has in common is having to well, unless some people do have very visible, quote unquote deformities or hand limb differences.

[00:30:16] Cheryl Crow: If they have pretty progressed disease. But even so, they might, someone might not even notice that they may not be looking at your knuckles in the case of RA. Or maybe your posture, in the case of ankylosing spondylitis with like bamboo spine, there are visible symptoms, but often people are just looking at faces, look at your face, and be like, you look, you look beautiful, or, and it’s just . People don’t know what to say and so they’ll try

[00:30:38] Melissa Marquis: yeah. Yeah. And I think a lot of it really is that, that there’s just, they’re grasping for something to say and so your default is to compliment or to say something nice, which seems nice.

[00:30:49] Melissa Marquis: Say, oh, I, I get it all the time. You have such a beautiful smile, you look so good today. And, I smile, I say, thank you, and I just kind of go along with it. But really it does nothing for [00:31:00] me. I know it’s well intentioned and it’s, it’s meant to, make me feel good.

[00:31:04] Melissa Marquis: But I think just because I hear it so much it, it’s lost that positive feeling for me. And it, it just kind of makes me feel more eh, they don’t know what to say.

[00:31:15] Cheryl Crow: Yeah, it’s invalidating. 

[00:31:18] Melissa Marquis: I, I feel, yeah. I think especially in days where I really feel like crap, and, and it’s a struggle. And, I think we tend to just, we have to carry on, like if, if, if we let our exterior body and facial expressions control what we actually feel like on an outside, like we’d never leave the house, we’d never do our hair. We’d wouldn’t we’d just be like, zombies and that’s not helpful. That doesn’t do anything. And so, I don’t know, it’s you just, we, we get to a point where you, you fake it till you make it sort of process and you just keep going forward.

[00:31:56] Cheryl Crow: Yeah sometimes I, I’ve heard people think of creative [00:32:00] responses to yeah, I, I wish I felt as good as I look or, unfortunately, or I’d rather, I, I believe me, I’d trade having a beautiful smile for feeling better on the inside. But you don’t always wanna turn it into a teachable moment.

[00:32:12] Cheryl Crow: It depends, especially if you don’t wanna invalidate, they’re trying to make you feel better, and then you’re like, okay, yeah. 

[00:32:19] Melissa Marquis: You don’t wanna make it awkward, just say Thank you and move on. 

[00:32:22] Cheryl Crow: Yeah. Well, and I, so, I really just think it’s great that you’ve provided, what’s in, in the book.

[00:32:28] Cheryl Crow: It’s not only a, tips for Living Well, which is in, in the title, living Resource for Living Well with Autoimmune Disease in terms of here’s our ways to manage it, but also that ways of, understanding and relating to your own self and your social environment having an invisible condition. And I’m just curious because you, the book came out in 2024, right? 

[00:32:53] Melissa Marquis: Well, yes. So last August.

[00:32:55] Cheryl Crow: What have been some of the responses so far? And I [00:33:00] looked at the Amazon reviews and they’re very glowing. 

[00:33:02] Melissa Marquis: Yeah. No, yeah. Overwhelmingly positive. Almost everybody that’s either reached out to me personally or through social media or what have you.

[00:33:11] Melissa Marquis: I’ve heard, oh my gosh. It’s it’s so validating. It’s like you were talking directly to me. Or about me. 

[00:33:18] Melissa Marquis: I, I get that so often. And so, I knew, if when I decided to go through this and write it, writing a book is expensive and you have to pay it yourself. Like there’s, there’s really kind of not much going around that.

[00:33:32] Melissa Marquis: At some point you, you are paying for the book. And so I thought, well, all right, if I’m gonna do this, it, for me to be able to touch one person and be able to give that, give them that sense of validation that sense of empowerment and encouragement to keep fighting and keep moving forward and, and pay it forward.

[00:33:56] Melissa Marquis: Then it was all worth it, $5,000. Sure. Okay. [00:34:00] You know what? Whatever, the total cost ended up being, but I, I just, I wanted, I wanted to be able to have that minimal of an impact. That alone would’ve been enough for me. to do it, just to hear from one. And so obviously I’ve heard for many more than that.

[00:34:17] Melissa Marquis: And, and they’ve been resounding, resoundingly positive, which is I’m so grateful for. But it also makes me a little sad though, because that means that there’s a lot of people out there that feel the way that I do, but yet we’re not talking about it,

[00:34:32] Cheryl Crow: yeah. Yeah. I mean, it’s it for me as somebody who’s they quote the kids say these days, chronically online, somebody who’s online a lot.

[00:34:41] Cheryl Crow: I feel like that’s the, what, what social media has formed or has allowed is a medium for patients with invisible conditions to feel validated. But there’s kind of a flip side of that where sometimes it can become either an echo chamber of, maybe misinformation [00:35:00] or like kind of worst case scenario is repeated over and over.

[00:35:04] Cheryl Crow: And giving gives people a false sense of the prognosis of the condition. I think that is particularly true in a case condition like rheumatoid arthritis, where there are effective treatments that are putting the majority of people in remission, but then if you go in the groups, the majority of people aren’t in remission and, and doesn’t mean that they shouldn’t have a space to be together, but, there’s always issues.

[00:35:21] Cheryl Crow: So I think having your perspective as both a health provider, as a nurse, kind of having that validation and perspective of, I know you have a doctor that, or scleroderma foundation, member that that contributes as well, gives it that kind of validation. 

[00:35:33] Melissa Marquis: Yeah, definitely. And, I wanted to also include not only just my personal and professional experiences but I, I wanted to make sure that.

[00:35:43] Melissa Marquis: Because I was not focusing on just one particular disease for the book, that it was a broad brush that I wanted to incorporate other individuals living with different types of autoimmune disease. And so I interviewed I think it was five, four or [00:36:00] five patients that have different autoimmune diseases.

[00:36:02] Melissa Marquis: Lupus, scleroderma. Did I have an MS in there? I’m trying to recall now. I, I had a couple of different diseases that were outlined, and so I asked ’em all the same five questions and just trying to get their their sort of insights, their recommendations, things that they would tell a new patient or a new a newly diagnosed individual with X disease.

[00:36:26] Melissa Marquis: What is it what’s, what are the things, what are the things that you wish you knew type of approach. And so, I incorporated those stories in there again to just add to that. And then I also interviewed my doctor yes, at Yale and wanted to get her take from a physician standpoint, particularly when seeing patients in her first visit or maybe a follow-up visit, and trying to make sure that individuals that are being worked up for a diagnosis when you’re going to see a specialist or a subspecialist in, [00:37:00] in my case here, that they that you’re bringing the right information to that appointment, like you’re doing your due diligence as a patient to make sure that you’re getting the most out of that appointment time.

[00:37:12] Melissa Marquis: Because we all know that the medical system’s broken that our appointment times are way too short and there’s not enough time to get all of the information, all your questions answered. So really wanting to help people to navigate that end of, healthcare system. So giving, again, my personal recommendations, what I’ve used as a nurse, my doctor’s opinions, different things bits of information that can hopefully help somebody else navigate their own journey with that, 

[00:37:43] Cheryl Crow: And that, that’s so true.

[00:37:43] Cheryl Crow: And I think, we not, not everyone even understands how broken the healthcare system is, especially if you’ve been had the kind of what I call health privilege of having, being able bodied and not having health issues for a long time. Sometimes people are [00:38:00] shocked at the level of care that they receive and they, and if you have no other explanation, at least for me, I, I assumed that I was doing something wrong when I was having such a hard time getting an accurate diagnosis.

[00:38:12] Cheryl Crow: I assumed I must have not explained myself well, or I must have, maybe they, they think I’m, not worthy. And that’s why my appointment’s so short. People tend to blame themselves and not understand that there are these systemic, issues at play. So I think even just your story, I’m thinking just, sorry, back to the topic of advocacy, of just even making it explicit that hey, you have to advocate for yourself.

[00:38:38] Cheryl Crow: It’s not like you did something wrong, and that’s why you have to advocate. It’s like the system is not set up to help you unless you advocate for yourself. 

[00:38:46] Melissa Marquis: No. And even when you do, so I’ll just share a quick story. So before I went to Yale, I went up to Boston to another scleroderma program that I was recommended to go to.

[00:38:56] Melissa Marquis: And so I, I got an a, an appointment rather, [00:39:00] rather quickly, which I was happy about. So I brought all of what I felt were my relevant medical records over sort of, again, spanning 11 years of information at that point. And so I condensed it, consolidated and got the more relevant pieces and, and put it together, and I sent it to them.

[00:39:18] Melissa Marquis: And then I also brought a copy with me. And so at the appointment, my doctor tells me, well, you’re so detail oriented and organized in how you’re laying out your illness and, and how you felt over the years. You’re so detailed in fact that you’re leading me to the path of diagnosis that you want.

[00:39:37] Melissa Marquis: And I, I was flabbergasted. I, yeah. I literally, I was dumbfounded. I didn’t, I couldn’t tell was he trying to be complimentary or was this an offhanded slap? 

[00:39:47] Cheryl Crow: Thinking that you are doing his job, 

[00:39:49] Melissa Marquis: yes, that’s what it was. 

[00:39:51] Cheryl Crow: But if you aren’t going to do it, I will do it.

[00:39:53] Melissa Marquis: Yes. Exactly. So that was how I came across, or how I felt he was coming across that [00:40:00] I’m trying to make the diagnosis and I, and unfortunately for I think healthcare providers who are also patients, see this more often than regular people that are not in the medical field because we tend to know a little bit more, and, and nurses, I think particularly get a, a bad rap out of diagnosing themselves and going to the doctor and saying, this is what’s wrong with me. Just write me the prescription. And I think that that’s what he felt. But either way, it doesn’t matter. You don’t ever tell a patient, you’re leading me to the path of diagnosis that you want.

[00:40:36] Melissa Marquis: I never, ever would want somebody to have to deal with the crap that I deal with and nor, not even just me, but any autoimmune disease and any patient. That’s how dare somebody in a medical profession say that I, want the disease.

[00:40:53] Cheryl Crow: It’s the same. It’s happening now. And this is important to talk about, even though it wasn’t what we planned on talking about.

[00:40:58] Cheryl Crow: It’s happening with because [00:41:00] of social media patients with more rare conditions or patients that have historically been conditions that have historically been underdiagnosed in certain populations. For example, different, cultural ethnic groups or different genders. So the common one I used to work in pediatrics, common one was ADHD and autism are often missed in young girls and young women because they can manifest differently and people compensate in different ways. And now some doctors are saying, well, these patients, these female patients are coming to me. And they think, ’cause they saw some video on TikTok that they have ADHD.

[00:41:34] Cheryl Crow: And it’s just, it’s like the, I’m like, do you, is it, are you so sure that the norm references that you have in the DSM or whatnot or are from, if you’ve been missing this population the whole time, it’s possible. There, there’s one or two truths can be true. Right? There’s that it’s being underdiagnosed and now awareness has led to it being correctly diagnosed, and this is, it’s increasing in quote unquote incidents and prevalence just because the [00:42:00] numbers are rising, because people are more aware of it.

[00:42:02] Cheryl Crow: Or is it what you think it is, which is what your bias is telling you, which is that you think that actually it’s now over-diagnosed in women and girls, but it’s like they jump sometimes to the conclusion that’s the least flattering to the patient, and that makes their life easier, which is hard, right?

[00:42:20] Cheryl Crow: For us. 

[00:42:21] Melissa Marquis: It is. 

[00:42:22] Cheryl Crow: Yeah. 

[00:42:22] Melissa Marquis: Absolutely. 

[00:42:22] Cheryl Crow: It’s happening with hypermobility and EDS too. So yeah. 

[00:42:26] Melissa Marquis: Yeah. I, yeah, I, I’m pretty sure that I have a variant of EDS and we, again, we’re kind of in this weird, do you have it, do you not have it? There’s no tests available for it, because I’ve tested negative for every available test, and, but yet I’ve got presenting symptoms that make, make it seem likely. And so, yeah, it’s, it’s. It’s difficult when you’re in that, in that boat or in that, predicament. Where it’s like, how, how many times can I go to the doctor and tell ’em the same exact thing and expect a different result? It’s yeah maddening. [00:43:00] 

[00:43:00] Cheryl Crow: Well, I, I feel you so hard on that.

[00:43:03] Cheryl Crow: It’s, it’s I don’t, I don’t think I’ve ever been hopeless, truly hopeless more than two times in my life. Both times they were around health issues, and one of them was where, a similar situation to you where I had basically, because no one else was doing this, I had kept a symptom tracker and tried to, and I didn’t have this clinical skills.

[00:43:28] Cheryl Crow: I didn’t have, I just had I was a junior in college, right? Yeah. Studying psychology at a liberal arts college. I had no like health experience, but I was just like, okay, well I’m the one who lives with this body 24 7. There’s clearly something wrong. So I tracked things and kind of the, my parents had actually hired, I had every privilege in the world.

[00:43:45] Cheryl Crow: Those of you listened to the podcast before, have heard this story, but you can hear more about on, on Episode a hundred, which is the one where I interviewed my parents. But they had hired a concierge doctor ’cause we had the resources too, and they were like, we trust our daughter. We know this is not normal for someone to [00:44:00] go from 135 pounds to 105 pounds, like wasting away.

[00:44:05] Cheryl Crow: All we know is okay, she finally got, first was accused of hiding an eating disorder, which I’m saying like the word accused because they were saying you’re lying to us. They accused me of lying and hiding an eating disorder when I was like, no, I want, I want to eat. I, I just, my stomach’s not digesting.

[00:44:20] Cheryl Crow: I’m like, oh, actually you have gastroparesis. Okay, well we, that’s a thing, but we still don’t dunno what’s wrong with you and this is before my RA diagnosis. And so I started tracking things. I took, sorry, it’s too much of my story, but I took it to the doctor and I’m 20 years old, right? And I’m like, I was a captain of soccer team.

[00:44:36] Cheryl Crow: I was like, I was so functional like a year, a year and a half ago. And then I just, my body started wasting away. So I’m like, let’s figure this out. And she’s what do you think? She literally lifted up the symptom tracking thing. I was like, what do you think it means that you that you did this. And I was like, it means that I’m trying to figure like I’m suffering, right?

[00:44:55] Cheryl Crow: And I’m trying to figure out why. Now this is my recreated memory of the, I don’t, I wish [00:45:00] I had the exact transcript. This is how I remember it happening. I could find, track her down and find it. But she is the doctor that eventually did diagnose me the RA But she, she, at this point in time she said it means that you’ve become hyper fixated on your health.

[00:45:16] Cheryl Crow: And you’re, right now, basically you need to chill out and go to a, go to a psychologist and or psychiatrist and stop worrying so much. I’m like, I wasn’t worried until I start like the chicken or the egg, right? The thing is my body started now functioning and it’s I joke, it’s like you, your house is on fire, which is my body.

[00:45:37] Cheryl Crow: And you call the firemen and they’re like, we diagnosed you with lady who thinks her house is on fire. 

[00:45:43] Melissa Marquis: Yep. Exactly. You’re like, 

[00:45:45] Cheryl Crow: what do you do? Who do you talk to?

[00:45:48] Melissa Marquis: It just, I know it’s so incredibly frustrating, maddening, all of, all of that. And, I, the best like advice I can give somebody [00:46:00] is just don’t give up.

[00:46:01] Melissa Marquis: Just keep going. I know, it’s so defeating, exhausting, all of it. Like it’s awful to be in that position where no one believes you and you are questioning whether or not at least this, in, in my case, it got to the point where, you know, either doctors or other people were being so dismissive of my symptoms and suggesting that it was me causing myself to be sick because I am now perseverating on all of the things that are wrong with me. And I can’t stop it. I cannot get my brain to turn off. Or to turn from just focusing on what’s what symptom at the time, like for a long time it was my gut and how bad I was feeling, and I focus, that’s all I thought about was how bad my stomach felt. What could I eat that was safe? And what happens if my safe food turns into bad food?

[00:46:58] Melissa Marquis: And I would [00:47:00] get sick after that. And so I’m like, I’m making myself sick. And, you start to almost believe what other people are telling you. And, and I’m so glad, even though I experienced some periods of that where I did doubt and I did question, am I doing this to myself? Am I really making myself sick?

[00:47:19] Melissa Marquis: Is there really nothing wrong with me? It, it finally, for me, the turning point out of that was to finally get some test results that said, yes, there’s indicative disease here. There’s measurable disease that we can see on these tests now. And up until that point, it was my word only, and how I felt. And so I just want patients, or I gotta get away from saying patients all the time, but I want individuals to feel empowered so that they keep going because it is so easy to just throw your hands up and say, that’s it. I give up. I [00:48:00] don’t wanna do this anymore. And I don’t wanna take the medications, I don’t wanna go to the doctor.

[00:48:04] Melissa Marquis: I don’t wanna do anything. I’m not gonna talk about it. I’m, I’m just gonna live. And while that might be okay for a short period of time, just to give you some mental health reprieve in the long term, you’re not helping yourself physically. You are not addressing anything that’s going on. And so you, you still have to have that drive, to keep moving forward.

[00:48:26] Melissa Marquis: But it’s hard. Yeah. Oh my God, it is so hard. 

[00:48:30] Cheryl Crow: And trust. Yeah. Trusting yourself, trusting your knowledge of your body. You’re the only one that knows what it is like to live with your body. And I really do believe that people have, well, it’s called interoception, which is like one of the three hidden senses, right?

[00:48:46] Cheryl Crow: Vestibular, proprioception, interoception, which is your awareness of your bodily internal bodily states, whether that’s pain or temperature, like kind of tummy, all that stuff. And it’s you know what your body feels like. And so I think you’re so right to [00:49:00] say, don’t give up if you believe something’s wrong.

[00:49:04] Cheryl Crow: And is there, and that kind of, I mean, I don’t know if that’s your same, would be the same question or answer, but to move on to the rapid fire questions, my first question was going to be, what are your best words of wisdom for people who are newly diagnosed with something like scleroderma or yeah, mixed connective tissue.

[00:49:22] Melissa Marquis:  Yeah. I think really what it comes down to is you have to learn how to be the best self advocate you can be because that’s gonna encompass the rest of your journey as, as a person living with a chronic disease. You’ve got to learn how to stand up for yourself to ask the hard questions.

[00:49:42] Melissa Marquis: And doctors, I think in general, and maybe this is a bad misconception on my part or a judgment it’s not intended to be, but I feel like they, that they don’t wanna be questioned, they don’t want [00:50:00] to have to explain, maybe for the 18th time what’s going on with your body, as at the end of the day, it’s your body and you have to live with it.

[00:50:11] Melissa Marquis: And so just keep being persistent. If you don’t understand it, if you’re, if you feel like you’re not your, either your illness, your tests, or the things that they wanna prescribe for you, if they’re not explaining it in a way that you can understand, you need to keep telling them, I don’t understand. Tell me in a different way.

[00:50:30] Melissa Marquis: Talk to me like I’m five or talk to me like I’m 95. Whatever your most comfortable way to learn is, you need to, you need to understand it because if you don’t understand it. You’re not gonna be compliant with whatever treatment. You’re gonna get frustrated. You’re gonna fight the system, you’re gonna fight your body, and it’s gonna ultimately make you sicker.

[00:50:52] Melissa Marquis: And it’s gonna, you’re gonna be more unhappy. It’s gonna affect your mental health. There’s just so many things that are gonna play into [00:51:00] this in impact or interfere with, how you’re gonna progress moving forward. And so I think that self-advocacy piece is the biggest aspect to this. And there’s a lot of people that I feel especially the more in the older population where they implicitly trust their doctors, which is great because they doctors do deserve respect.

[00:51:26] Melissa Marquis: And, they, they’ve gone to school for a very long time and they’ve studied for a very long time to really become an expert in their fields. But if, so just to blanketly trust that they have your best interests at heart might not be the best thing for you. So it’s okay to ask the questions or it’s okay to seek a second or third or eighth opinion.

[00:51:47] Melissa Marquis: Yeah. You can talk to them about it, it’s okay. They’re not gonna get upset if you wanna go see another doctor.

[00:51:53] Cheryl Crow: It’s the sign of a good provider. It’s, my doctor agrees with this if she says that if, if they’re okay [00:52:00] with a second opinion, especially, there’s often, at least in the rheumatology conferences, I go to, I’ve heard this numerous times, that rheumatology is an art and a science, right?

[00:52:08] Cheryl Crow: . We just don’t have all the answers. Yeah. And so yeah, I mean, I, I really resonate with you saying that, learn to be your best advocate and not only, maybe just don’t blindly trust your providers. ’cause at time, because I, I used to work in very randomly, but I, I worked in HR at a health academic medical center in Seattle. And they, oh, I did new employee orientations, which is actually really fun. And they had this one talk about, it was like, about risk management, but it was they showed this video called Two Error is Human and like humans make errors. And the idea was not to say everyone who makes an error is like the worst person in the world.

[00:52:44] Cheryl Crow: And of course there are evil people out there who like on purpose hurt people, but the majority of medical errors are truly, yeah, first of all, they’re systemic. There’s usually like the Swiss cheese model where numerous little things got Yeah. Add up. But my own rheumatologist told me last week, just along these same lines, she [00:53:00] said, she’s I don’t know what it is.

[00:53:01] Cheryl Crow: If it’s that, that, the healthcare workforce has been reduced because of people leaving medicine during COVID and just becoming burned out. She’s I’ve had so many. She’s said just in the last year. She said, I’ve seen an increase in incidence of patients who don’t, they have not been told very clear things that are in their chart.

[00:53:21] Cheryl Crow: She’s I’ll review your chart to see a new patient and she’ll be like, well, it’s probably because of your thyroid cancer or something. They’re like, what? I don’t even, no one told me I had that . and there’s a girl in my support group where she did, she was having a pain in her leg and her hip and her pelvis, and then she, she did an x-ray, never heard anything back.

[00:53:41] Cheryl Crow: She has a broken pelvis. She didn’t find that out until she went through her own records and realized no one had called her to follow up on this. So it’s like knowing that you have to double check things sometimes. 

[00:53:54] Melissa Marquis: Yeah. You have to be an informed patient. That’s part of being a good self-advocate.

[00:53:58] Melissa Marquis: You have to know your [00:54:00] disease in and out, almost as good as the doctor. You’ve gotta do the research, but you have to do it in a way using trusted resources and accurate information. Not Google, not Wikipedia, not, health news today or some random online journal and not through blogs, even though there can be some good information shared, but that’s not medically sound information.

[00:54:24] Melissa Marquis: And so that’s, that is probably my second tip for patients is, is to be an informed patient. Like you, you have to know all of it. You need to know, at least know what the common tests are, what the common treatments are, and because otherwise you’re not gonna know what questions to ask and you’re not gonna know how far you wanna go with treatment.

[00:54:46] Cheryl Crow: Yeah, a hundred percent. Do you have a favorite quote or inspirational saying for tough days? 

[00:54:53] Melissa Marquis: Yeah, actually my I’m stealing it from my doctor. So I had because she participated in the book I had sent her a, [00:55:00] a thank you gift for her help. And so, she had sent me a, a card in the mail a short time later, and she said, she closed it out saying, you are not invisible, you are powerful.

[00:55:12] Melissa Marquis: And that literally, almost just broke me in a good way. Like it’s just, I’ve never had really anybody tell me that, let alone my doctor tell me that. And it just, I just felt so seen then and empowered at that point and I just thought, oh my God, that’s the tagline for my book. And so, that’s, that’s, it’s that’s what I think of now when I’m having these really difficult days and when I’m continuing to struggle getting new diagnoses or dealing with new symptoms that keep popping up.

[00:55:46] Melissa Marquis: But yet I still remain that very rare zebra among autoimmune disease where, you think hoof beats and most people would think of a horses, no, you gotta think of a zebra or some other very rare [00:56:00] animal when it comes to me. And so, constantly telling my doctors, look, I don’t fit the medical textbooks.

[00:56:05] Melissa Marquis: You can’t think like a doctor right now. You’ve gotta think like a, an investigator. Yeah. And a detective and think outside of the box with me. And so that she’s helped me with that. And so I use that when I’m signing my books. I don’t, I don’t use her exact words. I say, you are, you are not invisible, be empowered.

[00:56:24] Melissa Marquis: So it kind of took a little spin on it and, making it a little bit more action oriented for the individual to take ownership of it. Because you have to if, if you wanna live a good life with this, you, you have to be an active patient. 

[00:56:37] Cheryl Crow: Yeah. So a hundred percent. Oh my gosh. The next rapid fire question is, do you have, and it’s okay if you don’t but a favorite arthritis gadget or tool in your toolbox?

[00:56:49] Melissa Marquis: I don’t have a, a favorite I do use a couple of different things. I think the one that I use the most is like the jar opener. The long thing with the different sizes that’s most [00:57:00] helpful for me. But, because I don’t have a lot of true physical difficulties. My biggest challenge is my fatigue level. And just my stamina. I don’t have the endurance that I used to have. And and so like I’m a runner. I’m a bike like a cyclist, and so I love being active and staying as active as I can because it’s helping me stay healthier longer . but I get frustrated with myself because I don’t, I can’t. Do what I used to do. I can’t go for a 20 mile bike ride. I can hardly hit 10 miles. Now and like those, those are the things that frustrate me the most. And so I’m constantly playing with things and trying to modify what I’m doing to find kind of the sweet spot where I’m still getting the exercise, but I’m getting the joy out of it because I need that.

[00:57:48] Melissa Marquis: So it’s not a real tangible item, but , 

[00:57:50] Cheryl Crow: no, no, no. But yeah, fatigue is like the mo one of the most important for me, quality of life correlators.

[00:57:58] Cheryl Crow: But yeah, I [00:58:00] can, I feel like I can work around the kind of pain that I have from my RA. I can’t speak to other people of course, but my RA pain, it’s a distraction, but it’s not as debilitating as the fatigue on my quality of life typically.

[00:58:15] Cheryl Crow: Again, I think I’ve got pretty well controlled disease ’cause of the medicines I’m working on it I’m taking, have been working well on my body. But the fatigue, when you can’t participate at all, ’cause you don’t have the energy, it’s just, it’s brutal. When you’re somebody who I, I joke, I, I started my, my blog in 2010 and I named it the enthusiastic life.com and and there was a point, my kind of second point in my life where I ever felt hopeless.

[00:58:40] Cheryl Crow: So that was when I had the di undiagnosed SIBO and I was starting to lose weight again and not know what was going on and I was like, I don’t even, I, I don’t even relate to the concept of enthusiasm, and that’s like my most core enthusiasm and extroversion are like my two core personality traits.

[00:58:57] Cheryl Crow: Well, extroversion slash like wanting [00:59:00] kindness, like wanting to be a good friend and wanting to love others and help others like you, being a helper and then just having that enthusiasm like robbed from you, even though you, like your brain wants it, but your body just can’t do it.

[00:59:12] Melissa Marquis: Right.

[00:59:13] Melissa Marquis: Yeah. It’s, it’s definitely hard. So constantly trying to find what works and, and it always changes, and so what works one day doesn’t work the next day. So just like layering different things and strategies and just trial and error, that’s what it’s all about, unfortunately. 

[00:59:30] Cheryl Crow: Even just being able to name that and is, is helpful to people who are like, okay, I have to framing it as it’s gonna be trial and error is, is comforting.

[00:59:39] Cheryl Crow: Because otherwise, if you think that everyone just figures it out and it’s never, it’s just a static thing, then you’re gonna be disappointed. Yeah,

[00:59:46] Cheryl Crow: Do you have a favorite book or movie or show you’ve watched recently or read? 

[00:59:50] Melissa Marquis: I’ve been like a voracious reader lately, and so I’m reading so many books that I can’t remember the names.

[00:59:57] Cheryl Crow: Yeah. Do you read on the Kindle? 

[00:59:59] Melissa Marquis: Yes, [01:00:00] 

[01:00:00] Cheryl Crow: me too. 

[01:00:00] Cheryl Crow: That is so hard to remember the name. 

[01:00:01] Melissa Marquis: I obsessed with it. I know. So I’m obsessed with it. And so, for the last two or three years, that’s that’s all I do is I read so I’m reading like, two to three books every couple of weeks. And, so I’m like, I’m like really into the psychological thriller mystery stage right now.

[01:00:17] Melissa Marquis: So, for a while I was looking at romcom type of things just to like de-stress and kind of get my head like this reading. So, I, I like that for a while, but now I want something a little bit more intriguing and thoughtful. So that’s what I’m into. 

[01:00:32] Cheryl Crow: Nice. That’s fun.

[01:00:34] Cheryl Crow: Yeah. No, I’m in a huge rom-com phase right now, so it’s been lasting a couple years, so it’s so fun. Yeah. Yeah. I wanna do all that reminds me, I wanna do an episode. Where of like chronic illness representation in romcoms? ’cause there’s is so many more. In the last five years, there’s a lot more rep.

[01:00:52] Cheryl Crow: I just read one called Get A Life, Chloe Brown, which is so good. The protagonist has chronic pain and 

[01:00:58] Melissa Marquis: I’ll have to look at that.

[01:00:59] Cheryl Crow: That sounds fun. [01:01:00] I feel like I never grew up, I’ve never saw any representation. Well, I didn’t get diagnosed, I was 21, but I never saw as a young adult any representation of a character in a movie or a show or a book that had rheumatoid arthritis.

[01:01:13] Melissa Marquis: Right. 

[01:01:13] Cheryl Crow: So it’s no, definitely. Yeah, there’s, now there’s a good handful. So anyway, yeah, that’s another topic 

[01:01:19] Melissa Marquis: , I’ll add, I’ll add to the the TV conversation though, so. if you have not seen the show Pit on Max yet. 

[01:01:27] Cheryl Crow: My poor husband. I tried to watch 

[01:01:30] Cheryl Crow: it. We are such, I can’t like, well, I think I can, I just, I need to, I need to do it not before bed. 

[01:01:37] Melissa Marquis: Yes. Yeah. It’s intense. It’s really intense, but it’s, it is the best most accurately portrayed medical drama that I’ve ever seen. And I was a huge ER fan for the 20 years that it was out, and I loved Noah Wiley back then.

[01:01:53] Melissa Marquis: And so having him play a new physician character, like it’s just great. And I [01:02:00] love that they’re incorporating a lot of mental health issues into it right now because obviously, post COVID mental health’s really gotten a bit of a spotlight and we need to keep talking about it and especially in how the medical profession was impacted by COVID specifically.

[01:02:17] Melissa Marquis: And yes, that’s not being talked about enough. And so I love that they’re doing this. And so like I can’t wait until the next season comes out, so. 

[01:02:24] Cheryl Crow: Well, thank you for inspiring me to read. I think I’m gonna have to watch on my own. My husband is very, very tough in many, many ways, but the blood and guts is not one of the, 

[01:02:33] Melissa Marquis: not his thing and there’s a lot of it.

[01:02:35] Melissa Marquis: So, yeah. 

[01:02:36] Cheryl Crow: Yeah, I got a little sensitized to that through OT school, but I definitely kind of self-selected into outpatient peds, so it’s not, not as medically complex. Right. And then arthritis not as medically complex. But last question. This is kind of the central thesis question of, of this podcast, which I think your whole episode has answered in many ways.

[01:02:58] Cheryl Crow: But I still like to a take a moment [01:03:00] to reflect on it. What does it mean to you to live a good life and thrive with autoimmune disease? 

[01:03:07] Melissa Marquis: Yeah. So actually when I was reading that, I was really kind of trying to think through what that means for me. And I think at the end of the day I, no matter what I face, health, personal, life in general. I want to always find my purpose in that. I, I am a firm believer that things happen for a reason. That, God has kind of ordained things to happen and that we’re there to learn something through it and to share what we learned, to be able to help other people through something similar.

[01:03:43] Melissa Marquis: And so, for me, this book has been my purpose in throughout the pain, so finding your purpose and your pain is probably my biggest takeaway from that question. And finding the joy in it because. I [01:04:00] think wherever your purpose is in life there will always be an element of joy and hard work.

[01:04:06] Melissa Marquis: There’s, you’re gonna have both and this book and then, a lot of the advocacy work and education work that I’m doing alongside of it with volunteering and different foundations and committee work and stuff, it’s, that has, has driven me even further and really kind of reignited or ignited a new passion.

[01:04:28] Melissa Marquis: I think, I think I always had it, when I was talking about the CF population that I took care of, I had it then, and I always just thought it was just for that population group and it’s, I, I don’t think that that’s the case anymore. I think it’s helping those who are marginalized in some manner to help give them tools that they can use to make their life better. I think that’s really kinda what it comes down to for me is where my purpose is in this. So as hard as it is living with this [01:05:00] there’s, that’s what gives me hope to keep going on one of the things anyway, to keep pressing forward because

[01:05:07] Cheryl Crow: That’s wonderful.

[01:05:08] Melissa Marquis: Yeah. Otherwise, you, you just get stuck, and you, you get lost in your negative spiral of thoughts and how bad you feel and how terrible life is. And I can’t do this anymore, and I can’t go out, I can’t eat out, and my social life stinks. And, you just go down this, terrible rabbit hole and you can’t get yourself out.

[01:05:29] Melissa Marquis: So finding things to get yourself out, whether it’s, this, the, the show, oh, I can’t remember. It’s a, I think she was a Japanese woman who loved to clean and organize 

[01:05:41] Cheryl Crow: Yeah. Marie Kondo. 

[01:05:42] Melissa Marquis: Yes. So her thing was finding sparking joy. That’s it. You just need to find whatever it is that, that set joy in you to keep I love that.

[01:05:51] Melissa Marquis: Keep your life happy, and enjoy it. Yeah. And it, 

[01:05:53] Cheryl Crow: and I think sometimes, I do have a lot of people on the podcast who have made, found their purpose in [01:06:00] helping others in the autoimmune community or the chronic illness community. And like you said earlier, it, it can, it doesn’t even have to be, it doesn’t have to be that.

[01:06:07] Cheryl Crow: It can be, you could find that you’re really passionate about, geology and restoring the environment or, finding something that brings your life purpose and meaning is, and, and it, it, for me, it’s an, it’s like they say happiness. You can’t become happy by trying to be happy.

[01:06:24] Cheryl Crow: Happiness is like a byproduct or side effect of engaging in meaningful, valuable, enjoyable things. So for, for me, swing dancing was, was a big kind of, and, and has become a big community and, and, and, purposeful activity for me too. So finding something, remind yourself something you could still do.

[01:06:41] Cheryl Crow: Now, not everyone can dance. I’m fortunate that my body is allowing me to dance, but if I couldn’t dance, I could DJ or still be part of the community in that way.

[01:06:49] Melissa Marquis: You adapt, and, and as, as, as my disease and as everybody else’s illnesses progress. You learn to find new things and new ways to do the [01:07:00] activities that you loved.

[01:07:00] Melissa Marquis: Like I said, I, I can’t run or bike the distance that I used to, but I can still do it. and so I’m gonna do it, and I like to go or there’s water and so I’ll go find a lake and I’ll ride around the lake and hey, I’m really happy ’cause I’m being outside. I’m seeing the water, like that’s therapeutic for me.

[01:07:17] Melissa Marquis: I’m getting exercise that’s good for my lungs and my heart, like all of it, so it’s just, it’s that cumulative effect of just, yeah, getting out and doing the next thing, I guess is kind of a good way to put it. 

[01:07:29] Cheryl Crow: They say in frozen two, the next best thing. And I dunno if you ever see that movie, but I’m a big, I have.

[01:07:35] Cheryl Crow: Yeah, absolutely. It’s a, yeah, it’s, it’s a classic to, to me, I, I never got out of the Disney movie phase, but, so again, I wanna make sure to say the but name of your book again, just so people know. And, this is not sponsored by you. I just, we met on social media and, and you let me know about your book and I think it’s fantastic.

[01:07:54] Cheryl Crow: And I just, this podcast I choose to kind of. I don’t, I don’t high, I certainly don’t highlight everyone that [01:08:00] approaches me with their product that, because I get contented by a lot of really bogus stuff. But in your case, this is, fantastic resource. Yeah, you’re like coming up next week a supplement that’s guaranteed to reverse your Oh boy.

[01:08:14] Cheryl Crow: Yeah. But yeah, your book is called Invisible: a Nurse Turned Patients Resource to Living Well with Autoimmune Disease, and I’ll definitely put a link to it in the show notes. 

[01:08:24] Melissa Marquis: Thank you. Yeah. And yes, I appreciate that very much. 

[01:08:26] Cheryl Crow: No, no problem. It’s it is very grassroots, right? We have to just, get the word out.

[01:08:31] Melissa Marquis: Definitely. 

[01:08:31] Cheryl Crow: And if people wanna connect with you online, where should they go? 

[01:08:36] Melissa Marquis: Yeah, so probably the easiest place would be their my Instagram which is my first initial m for Melissa and then my last name, Marquis, so M-A-R-Q-U-I-S seven eight, the numbers. So that’s my handle. And feel free to friend me on that if you wish.

[01:08:53] Melissa Marquis: And then my LinkedIn page. So you can just Google Melissa, and you’ll, I think you’ll have a picture in your [01:09:00] show notes for today so you can match up the pictures. ’cause I’ve got ’em all the, I had some photo shoots done for the book cover. And so I’ve got all these great pictures now that I can rotate through.

[01:09:10] Melissa Marquis: And so each podcast or different, book event that I’m doing, I’m sharing, different pictures, so you’ll, you’ll find them. 

[01:09:17] Cheryl Crow: That’s awesome. That’s so great. Well, thank you so much. I know we, we went a little over the, the usual amount of time, but I was like, I just really loved talking to you and we, we did say beforehand that

[01:09:29] Cheryl Crow: that you were like, okay. We can go over a little bit. But thank you for anyone. Absolutely. Anyone’s still listening to the episode. Thank, thank you. I know it. 

[01:09:35] Melissa Marquis: You get a gold star. They haven’t turned it off yet. 

[01:09:37] Cheryl Crow: Yeah, yeah, yeah. And we’ll yeah, hope everyone checks out your book and, or connects with you and, or connects with you on Instagram and we’ll talk to you later.

[01:09:47] Cheryl Crow: Thanks again. Bye. 

[01:09:48] Melissa Marquis: Thanks Cheryl. 

[01:09:49] Cheryl Crow: Thanks.[01:09:50]

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