Michole J lives with rare muscle disease polymyositis (PM), which falls under the umbrella of muscular dystrophy. PM is an uncommon inflammatory disease that affects the entire body — and while Michole began to exhibit symptoms in her late 20s, she was diagnosed at age 30 with the rarest form. Living with the condition create mobility challenges, from climbing stairs, lifting objects, raising her arms, and even becoming rapidly exhausted from any kind of movement, to breathing issues due to the spread of inflammation to her lungs. Michole’s mission is to bring more awareness to invisible illness, reminding us that we may not all have the same illness (or any illness at all), but that our struggles are still the same.
Tune in as Michole shares:
- how she first started experiencing symptoms
- that it took almost three years and several hospitalizations for her to get a diagnosis
- that her symptoms overlap with numerous other chronic illnesses
- that polymyositis is a progressive disease, and largely affects her limbs
- that she was never offered mental health support along her diagnosis and treatment journey
- that she’s now got the additional diagnosis of ILD — interstitial lung disease
- the struggle of being believed when living with invisible illness
- how her mother has stepped up as an advocate for her since her diagnosis, and how they have become even closer as a result
- how caregivers experience chronic illness and disability alongside their loved ones
- the importance of remote work opportunities for her
- why the cost of healthcare and treatments can be debilitating for patients
- discrimination she’s faced from the public
- how race has impacted her experiences in the medical system (and beyond)
- her frustration with lack of representation in rare disease
- how a lack of curiosity in the healthcare system is causing problems for patients
- how she’s learned to say “no”
- why it’s useful to develop a meaningful relationship with your practitioners
Lauren: All right, guys, thank you so much for joining us. I am here today with Michole Jones. Michole lives with a condition called polymyositis. She's an advocate for the condition. She's going to talk to us all about it. So Michole, thank you so much for joining us.
Michole: Thank you for having me.
Lauren: Such a pleasure. Yeah.
Michole: So nice to meet you.
Lauren: You, too. Absolutely. So everyone knows I love to start at the very beginning of the story. And I would love for you to tell us when and how you were diagnosed with poly myositis and how you have gotten yourself to a place of function and health.
Michole: I would honestly say it's been a journey and it's a continuous journey.
Right now, I'm better, but it’s never-ending.
I first started showing symptoms in my late 20s. I'd never been sick before. I wasn't born with the disease. I've never been hospitalized or anything before that, just the common cold, you know, you get the flu. But it started off … I believe that I had like an infection in my leg at one point, and I went to the doctor, and was on antibiotics for about 10 days. They sent me home, I seemed to be okay after that. But after the 10 days, I noticed that my legs swelled up again. And so I went back, and I kind of kept going back and forth for about a month. Until I got really, really sick, and then I had to be admitted into the hospital. And once I was admitted into the hospital, they said, “Well, it looks like you have maybe cellulitis or a really bad infection. You don't know how you got it. We don't know how you got it. But you're okay.” And I was hospitalized for about a week.
Lauren: That's a really long time to be hospitalized. It sounds like you got an infection, and they didn't treat it properly. And so now you have an infection …
Michole: Right. And that's kind of how it felt. Then being in the hospital for a week, I was on antibiotics intravenously that entire time. And so I was just like, okay. That's the first time I was ever hospitalized in my life. And I was sent home thinking that everything after that was going to be fine. I would say within two months, I was feeling very, very weak. The stuff that I was normally able to do … I would come home, lift up my garage; I was trying to lift up the garage, I noticed I couldn't lift it up anymore. I was going to the cabinets to take out a cup or get a plate, and I was kind of missing it. I was reaching over and I didn't get it. But I was in my late 20s, I had so much going on. I had three jobs. And in New York, everyone is always doing something. So I was super busy at that time. So I kind of just took it as, I'm just tired. Maybe I'm just feeling burnt out. And then I end up having bruises all over my body. I am super clumsy. So again, I wasn't really thinking that anything was wrong, until I fell sick again, and I got hospitalized. And once that happened, they said, “Well, you were hospitalized a month or two ago, and your white blood cell count is high. Something is definitely going on.” And from there, it just went downhill. It's took almost three years to diagnose me. They told me that I had everything under the sun.
Lauren: Which is scary, because any kind of diagnosis that they could possibly give you, they’re all either lifelong or chronic or something that could be very serious. So playing around with diagnoses isn't fun for three years, either.
Michole: It’s not, it's not. It was extremely scary. And I didn't know what was happening. Again, I was just thinking at that time … even though I had a part-time job at that time in healthcare …
I figured you get sick, you go to the doctor, they figure it out, you get treatment and it's done.
That's not what was happening to me. And then it wasn't anything that was normal. They were telling me cellulitis, they were telling me lymphoma, they said lupus.
Lauren: I was waiting for you to suggest lupus!
Michole: Lyme disease, scleroderma. It was just blow after blow after blow. It was a very dark time, a very depressing time for me, because no one wants to hear that.
Lauren: And nobody offered you mental health support, I imagine either.
Michole: No, absolutely not. I always say that. I always say … you know what, even though it takes a toll on your body, it took more of a mental toll on me than anything.
Lauren: Yeah. And then affects the physical. It's a vicious cycle.
Michole: Exactly. It was a vicious cycle. And it was the darkest time in my life.
Lauren: Well, and you were progressively getting sicker and sicker, it sounds like. And that's the kind of thing where, when you're living with that uncertainty umbrella hanging over your head, that's very frightening. And I imagine there was also a distrust of the medical system at this point, too, because of this idea that maybe it's their fault that you got this infection that got you sick.
Michole: Absolutely. The health system that I was in at that time … they were good doctors, but of course it had me second guessing and saying, are they not doing this correctly, what's going on? And I did wind up having to leave that health system to get the best treatments. But polymyositis is so rare; my symptoms were masking so many things. So, as I think of it later, and I've met other people that have lupus or have different chronic conditions, I'm just, like, oh, my God, I have the same symptoms. So now when I think about it, of course in those beginning stages, they possibly thought that it was those things. But then one day, when I was actually tested for it, it came back negative. It was just hard. It was rough, because the hardest thing is getting to the diagnosis. You want to know what it is. But there were times where I was so scared to find out the diagnosis. Because after you’ve told me so many things that it could be and then it wasn't, it was just, like, oh my God, what do I have? What's going on? It was just a monkey wrench was thrown in my life; it was absolutely the worst time of my life.
Lauren: Well, and it's interesting, too, because this happened in your late 20s, when you're perfectly able-bodied, and all of a sudden, you are exactly literally disabled. This is a disease, polymyositis, from what I understand, that we don't really know exactly what causes it. Because it is potentially an autoimmune disorder, right?
Michole: It is.
Lauren: So can you tell us a little bit about it and how it's affected your body?
Michole: Yes, with polymyositis, it's under muscular dystrophy. So there's myositis, dermatitis, polymyositis. Mine increased rather rapidly, to the point that I remember almost becoming a vegetable. And I remember the days where I was just so incredibly weak, where I couldn't even lift my head up off the pillow.
I couldn't move, I couldn't walk. It was devastating.
It's a mobility issue. It's definitely a disability, because it's affecting your entire body, mainly my arms and my legs. So even to this day, and I'm now in my late 30s, I still cannot get my arms over my head. I can't reach out for you if I wanted to. I basically taught myself how to do a lot of things because I had to. But it affects you every single day. Every day, I'm weak, even though you have good days and bad days, I never gained back that muscle that I lost.
Lauren: Because it is a progressive disease as well.
Michole: Exactly, right.
Lauren: Yeah, right. So are there management treatments for this disease? How does that look? Were you offered rehab at the very least?
Michole: So yes, I was offered rehab. But because polymyositis is a disease that very rare — and usually everyone that I encounter doesn't know what to do with it — I went to rehab a couple of times, and to me, it was just a waste of time. Because they didn't know what to do with me. I found that they were kind of like, “Lift your leg, do this, do that.” And I felt like … if you're not going to help me do it, because obviously I can't do it, I could just go to the gym and do this myself. They really didn't know how to help me. It was very scary when I noticed that I was losing mobility in my fingers and I couldn’t write anymore. You just kind of see yourself going downhill. There's a number of treatments for polymyositis. So it's about finding that … I call it cocktail. And the cocktail for everybody is different. I’ve been on so many different infusions. And IVIG (immunoglobulin therapy). I’m on one right … I cannot pronounce the name!
Lauren: I don't blame you. We don't need need to shout out these pharma companies. They don't need our money!
Michole: I can't pronounce the name because I always say it wrong.
Lauren: But it’s another infusion.
Michole: It’s another infusion. An old one that I used to take was rituximab. And I do it twice a year, of course while taking other medications and endless vitamins and everything to try to keep my immune system up. Because within the last two years, the polymyositis, the inflammation, spread to my lungs and I was diagnosed with ILD, which was another blow.
Lauren: Now tell us what ILD is.
Michole: It’s intestinal lung disease. And that was very difficult to deal with. Because I thought I had a cold. And because it is an autoimmune condition, I'm very susceptible to getting sick.
I don't get over the common cold. If someone has a cold around me, I'm like, oh, God, please.
You're gonna get over it. But I definitely have …
Lauren: Like, I’ll be sick for six weeks.
Michole: Yeah. And that's what exactly happens. And for some strange reason, even though they say antibiotics don’t normally work, for some strange reason, even with a cold, it works for me. But who wants to go through all that? So I usually try not to get sick. But my cough persisted for over a month, and then my doctor, my rheumatologist, always says, “Listen, if you start to ever have any lung issues, you need to let me know right away.” And after a month into it, I just happened to email her and I said, “Hey, I'm experiencing some lung issues, but I think I have a cold.” Of course, everything with me is always extra. I feel it's never anything simple. And after testing, they said that it spread to my lungs, and that was another blow.
Lauren: So is this something that might have an effect on your mortality as well? Have you had to face that kind of concern?
Michole: Yeah. Yeah, definitely.
Lauren: Wow, that's really scary.
Michole: It is, it is. There's so many things that I feel like the disease robs you of. And the fact that it's … I call it an invisible illness, because it is; you're going to look at me, and you're not going to think anything of it. And then I don't carry myself that way. I'm still the same female that I was. I'm still extremely girly. Even when I have my infusions, I will come with my laptop, my workbook and everything for work, and my dress, and they'll be, like, “Who’s this girl walking in here?!” I don't look like anything is wrong. Yet I have all these things going on inside of me. And I will never forget, there was a surgeon — the one that actually diagnosed me — because I had multiple biopsies. And when he first met me … I noticed he walked out the room … he came back in and he said, when he sat down and consulted with me, “I had to really see if you were really the person on paper, because on paper, you look sick. But what I'm looking at in front of me, doesn't look like the person on paper.”
He told me, “You're gonna have a very difficult time. Because no-one will believe you.” And that stayed with me.
And it's the truth.
Lauren: Yeah, absolutely. Well, that's the fact of living with invisible illness and being female. And being a woman of color, which we're going to talk about that, too. The likelihood of being believed goes down a notch with each of these layers of invisibility really. So it sounds like this is something where … certainly in a climate like this, in the midst of this COVID pandemic … you are someone who is considered high risk, who looks perfectly healthy on the outside. And when people don't wear a mask around you, they risk your life.
Michole: Yes, they do. COVID is very scary, especially in New York. We're doing much better right now, but in March, April, May, it was extreme. It was surreal. And it was very scary. Luckily, I've been remote the entire time, and I'm still remote right now. But I'm nervous to be around people, especially the fact that I have lung issues. With COVID, it just increases your anxiety. I have good days, I have bad days. But at the same time, I try to keep myself together and keep my immune system as strong as I can. Because you just never know, and you kind of have to live your life. But being secluded is a lot. I have good days and bad days, and maybe the past few days weren't so good.
Lauren: But thank goodness for virtual connecting, right. You are experiencing all of this as an adult. So you were having to learn to advocate for yourself, because you've never really had a health crisis before. Have you leaned on anyone else for emotional, mental, physical support? Or has it really just been your lot to step up and learn?
Michole: My mother is definitely my advocate. I advocate for myself. But there was a lot coming at me at one time. And there were times where I’d see so many specialists and I see so many specialists at times, where I think I blank out — and you can’t remember everything that's being said to you. Especially during the beginning, those years when we were trying to figure it out, I had to count on my mother so much to be there. And it took a toll on her, because I'm her only daughter. And she sees that I was okay one day — and the next day I wasn't okay. And it was just downhill from there. So it took a huge toll on her. But it made us incredibly close. We were always close, but we have grown closer due to it, and I can't even picture my life without her. She's there every step of the way. And she's been a great help to me. Even though I'm at a stage where I'm better now, that I'm able to do more because I've taught myself, but I wouldn't have probably been able to be this way without her.
Lauren: Is that something as well … your mother watching you be sick, and stepping up to take care of you. We expect at a certain point for those relationships to shift, right … for us to be taking care of our parents. But it sounds like it may not work out that way, because you're chronically ill. So how has that also affected the trajectory of the way you see your relationship with your mom?
Michole: I feel bad, because sometimes you feel like, it's just so much. And there's many days that I feel like a burden. Because there's days I don't want to deal with myself. I want my mother to have her own life, and there are times when she would sacrifice so much just for me. She says, “No, I have to help you.” She's basically my caregiver. I'm independent, and I'm able to do a lot of things on my own now.
But at the same time, those people that do take care of you, those caregivers, they need more credit.
Because at the same time, you're not the only one that's going through it. It affects your entire family. It affected her a lot. And it still does. There’s so many times where she just looks at me … she calls me Mickey … she’s, like, “Mickey, I’m so sorry this happened to you.” We'll just have these little breakdown moments. But at the same time, it made us live life, and we go on vacations together, and we go shopping together; we do so many things together. It's unfortunate, but it's made us so much closer.
Lauren: You’re making the most of it really.
Lauren: So walk us through … I know there's probably no such thing as typical, right … but what a day looks like for you, generally speaking. You said when you were first diagnosed, you had three jobs. How are you balancing the demands of work and life as you’re managing potential symptoms, and understanding and trying to take the space and time to listen to your body, but also be an active member of your community. What does that look like for you?
Michole: Every day is different. I’m very much a planner. But then I can't always plan. I can plan on what I wanted to do, but I never know how I'm gonna wake up. I never know how I'm going to be day to day. I can wake up in the morning and be fine, and a few hours later, my body can go into severe flare. I can be in pain for a few hours, or it can last several days, There's days where I've been in pain for three days straight. I still don't even know how I actually deal with that. Because there's different levels of pain. There’s functional pain, where I can be at work, and I can be in meetings and maybe I'll take a Tramadol or something and I'll be uncomfortable, but I can still make it.
And then there's times where the pain is just at a level where I feel like, oh my God, knock me out. There's no way I can get through it.
And when it lasts for several days, you're just hoping, oh my God, please stop, just please stop. You have no control. There is no control of my body anymore. There's nothing that I can do. And that's what hurts the most. And then once I'm over the pain … it takes me about another three to four days just to get over it, because your body went through something so traumatic … I have no energy after that. So work wise, there's sometimes difficult conversations that I have to have with my job. For me, because I happen to work in the health IT field, even before COVID they always had that business model where you could work remotely.
Lauren: That’s really lucky.
Michole: Yes. So I was actually in the right field at the right time. I've been in healthcare IT for about eight years. I always kind of worked remote, but I always traveled. Either I was home or I was traveling, and I had a very, very heavy travel schedule. And that's when, of course, I would get worried because I never knew how I was going to be when I would travel. But you have to do what you have to do. Sometimes people ask me, “How do you do it?" But I have no choice. Because disability is not an option for everyone. It doesn't pay the bills; it definitely doesnt even pay for my car.
Lauren: Absolutely not. And when you're on disability, there are limits to how much you can actually earn outside disability — which keeps you in the poverty bracket.
Michole: Exactly. I don't even know how they do it. And that's the thing, I have a home … who’s gonna pay the mortgage? And then when these things happen to you, there is an increase in your costs. I had to spend so much money in my home just rearranging things so that it can be easier for me to just be independent. I had to buy a new car. I can't even deal with having a regular car or an older car because all the features in a newer car — it's actually safer for me, because it's easier for me to navigate. I felt like I was always a little prima donna before, but now, it's just …
Lauren: You’re extra extra!
Michole: I’m extra. But these things, they're more of a necessity now. The only way that you can stay independent — because you don't want to always have to rely on people to do everything. You have to learn, you have to make a way.
Lauren: Not to mention the increase in your healthcare expenses as well. This is your living expenses. But you're going to the doctor more, you're paying for more medications, and you have to pay out-of-pocket even when you have a deductible for these things. It adds up. And there is a lot that insurance, I'm sure, doesn't want to cover for you.
Michole: Oh, they don’t. I just recently had an infusion and I got a bill … the insurance paid one half and the bill that I have … oh my God, it's mind-blowing. But what am I supposed to do? I hope I don't tear up at any point …
Lauren: You’re allowed, this is your space.
Michole: This is the only thing that's helping me live right now.
This is the only treatment that's making me have a way of life — and I can't afford it.
So what do I do? Do I tell them to stop the treatment? And what happens to me, then? It's unbelievable. And these are the things that people just don't see, or they just don't know.
Lauren: Yeah. And it's part of the brokenness of our system, which is not creating opportunities for people who are living with chronic illness. Which we will also get into in a minute. I know before you mentioned this idea of people not believing you. And I would love for you to talk to us, if you have any particular examples that come to mind, of situations in which you've been confronted and forced to validate the existence of your diagnosis to people who didn't understand it. Either because they didn't know what it was, or because they couldn't see it — because it is invisible. Can you talk us through how those situations may have manifested for you in the past?
Michole: So I kind of go through this all the time. It's like my way of life! One of them is, I have a handicap pass, and having a handicap pass is definitely needed. Because I can't even lift five pounds, I can't even get my arms over my head. So I need to go grocery shopping, I need to go to doctors’ appointments. And if I go grocery shopping, I have a whole bunch of bags. If my car is parked all the way in the back, I can't do anything. So of course, having the handicap pass, and I'm able to park my car in the front, that helps me out a lot. There's times when I get comments or nasty stares, like, what is she doing with that handicap? She doesn't look handicapped. Because I'm not coming out of my car, necessarily, with a cane. There's times I've even faked it honestly, because I just didn't want to see the stares. And it's so sad that I feel like I have to fake things just so that I don't get questioned or get nasty looks. Because I travel a lot for work, or when I just go on vacation, I utilize the handicap where you can use the wheelchair services.
It was a little embarrassing for me. It took me a while to get there.
Lauren: I know that feeling.
Michole: It was just, like, I'm like in my 30s. What do you mean that I need to use a wheelchair?
Lauren: It’s also that question of identity and how much am I seeing myself as disabled? And how much am I willing to accept, right?
Michole: It was very hard for me to accept. And it's sometimes still hard for me to accept, but I have to do what I have to do. In New York airports, especially somewhere like JFK, it's huge. Sometimes I'm wiped out walking through that airport. Or if I'm going on vacation for my leisure time, sometimes it's about preserving your energy so that I can have a good time when I'm there. But even when I'm going through the checkpoints … I remember there was a time when I went through the checkpoint, and I happened to whisper … because they want you to lift your arms so they can search you … and I said, “Listen, I can't lift my arms up. So can you just take the wand and search me? We can go to the side or anything.” And she was like, “What, what??” And when I say polymyositis, they don't understand, they don't know what it is. So usually, I have to lie and say I have MS. Because MS is a disease that people recognize, it's known. When you say something like polymyositis, no one usually knows what that is. So I usually have to say I have MS or something else. And when I come in the wheelchair, I may have my shades on, because I get a lot of stares because I don't ever look like anything is wrong with me. But I can't lift my arms up, I can't take my luggage and lift it up over my head to put it on in the airplane. I'm susceptible to falls. If I fall down, I can't even get up — and no one's gonna help me, because they're gonna look at you and say, “Why don't you get up?” But I'm that weak at times. So that's something that I go through on a daily basis. And even sometimes, when having hard discussions with jobs, that you need a little flexibility … I thank God that, again, the field that I'm in, they're supportive of a remote model. But I still have to have certain discussions. Because, of course, you don't necessarily want to open up, you don't want people to know your business. But I have to tell them, because if I'm doing too much, I'm never going to be my best. And you have to remain your best. You want to keep your job, and you want to do what you need to do. But sometimes you need a little flexibility to do that.
Lauren: So true. And it's again, this mental health, physical health, vicious cycle — one thing creates the other. And it's all connected to stigma, to other people's judgement for you as well. Really the reality you're living in is one in which you are subject to other people's whims all the time. And that's not okay.
Michole: Yeah, no one believes you. Sometimes I feel that something needs to happen to me, in order for them to believe it.
Lauren: Like you need to permanently be in a wheelchair or something.
Michole: Exactly. And who wants that. I'm doing everything I can every single day. They told me by the time … I was 32, and I remember speaking to the neurologist, and he told me, “I need to tell you this, because I need you to prepare … you need to possibly look into disability.
We think by the time that you're 35 years old, you are going to be in a wheelchair.”
And that was a rough blow for me. I'm extremely stubborn. It was just like, there's no way I'm going to be in a wheelchair. And I do everything I can to not be. I partnered very well with my doctors; I have a great team right now. It took a lot of work for that not to happen. But again, that can still happen at any point any day.
Lauren: So it's like a looming threat, which is also an emotional stress for sure.
Lauren: You're talking about your doctors. What about in the health care system … do you think that you've experienced undue prejudice? Particularly because of the way you present. You're a woman of color, walking into these medical offices. Do you think that some doctors may have taken you more seriously if you'd been a white woman, if you’d been a white man? That your gender or your race have played a role in the time it took to get diagnosed and the treatment that you've endured in the medical system?
Michole: There was a time that I experienced … it was with a neurologist when I was taking IVIG. That was one of the first treatments that was given to me. I was on it for some time, over a year. And I told him, “I don't see a difference in the treatments. I know that you said, it's going to take some time. And it's been some time. But do I have any other options? Because I don't see anything happening, and I just feel like we're continuing to do something that's not working. Maybe we should move on.” And he told me, “Well, no, we're not going to do that. Because this treatment works for everybody. There's nothing else that we can really do.” And I’m, like, “Well, I know you’re saying it works for everybody. But I'm telling you, it's not working for me.” During another visit when I came back to see him, I was in the waiting room, and there was another lady there, seeing her rheumatologist. She was a white woman, and we were just talking; she happened to be on IV, the same medication I was on. And she said, “Oh, that didn't work for me, either.” I don't know what condition she necessarily had, because we didn't go into that. But she said … all these other options that she was presented with when it didn't work for her. And then thinking about my last conversation a few visits ago, with the neurologist, telling him … this was in no way disrespecting his work or me thinking that, hey, you're doing the wrong thing. What I'm just trying to say is, I don't think this is working. Are there any other options? Basically, to me, he said, there were no other options. Yet with this other woman, she said that they gave her other options. They even gave her another physician in an entirely different health system. I didn't want to take it personally but then .…
Lauren: How can you not?
Michole: I did take it personally, because I felt that I wasn't given that option.
Lauren: That’s dreadful. I’m really sorry you had to go through that. That's really terrible. Would you say that, given your experience, and the experiences of many other people that we hear stories about within the medical system, that racial and gender inequality in healthcare is tantamount to a public health crisis?
Michole: Absolutely. I think it's very known. It's unfortunate, because you can have an African-American person, and a Caucasian person can have the same insurance, yet they're gonna possibly give better resources to the Caucasian person versus the African-American. Of course, even when you live in a certain neighborhood, or they automatically assume that you're not healthy, or you don't have access to certain things, or you have poor eating habits. Sometimes that can be it. But sometimes it's not. Everyone is not the same. And I try not to look at it that way, but sometimes it's hard. And I also work in healthcare. So I see things that happen like that all the time.
Or I've met people, where I’m, like, oh, my God, that never happened to me, but it happened to them.
So you see it all the time.
Lauren: It’s really disheartening. But it's also, I suppose on the flip side, heartening that these conversations are opening up more, and that it's being called out more, the systemic racism and the systemic misogyny in the system, right. It starts with research, let alone with the treatment of patients. So I applaud you for sharing your experience today.
Michole: And that's another thing with research … sometimes when it comes to treatments … I would say, I grew up in a West Indian household, and anytime they came to a test or certain things, it was just kind of, like, “You don't want to be anyone's guinea pig.” So there is those stigmas where you feel like if there are trials …
Lauren: You’re too scared to get involved. There's no trust.
Michole: Yeah, you’re scared to get involved because there is no trust. And if you didn't experience something yourself, you probably have a family member that was just going to tell you, “No, don’t do that.”
Lauren: Yeah. And then that's hard. Because again, the vicious cycle … when there's distrust in the system, why would you get involved in the system to change it? And then it won't change when there are no subjects, and all that kind of thing.
Lauren: Yeah, that's really rough. Plus the additional mental health strain when you're dealing with this kind of discrimination as well. I mean, there are so many layers to it. But it is something that sounds like it's a constant awareness as well.
Michole: Exactly. Yeah.
Lauren: Can you talk to us about your advocacy work? You share about your experiences on Instagram, and that seems to be your main platform. But I would love for you to talk to us about the work that you do, and how your own experiences inspired that work.
Michole: As far as advocacy, I just feel that invisible illnesses need to be taken just as seriously as other chronic illness conditions that you can see.
I feel that we live very lonely lives because we have to constantly explain. I am so tired of explaining, I am so tired of it.
And sometimes you don't even want to include yourself, and you wind up being in a lonely place where you feel like no one understands me because they don't see it. There's no roadmap. Especially people that have not been born with the disease. There were no images of myself. When I first found out that I had polymyositis, all I saw was images of children with muscular dystrophy, or there were seniors. There was no one that looked like me, definitely not an African-American person, definitely not a person in their 20s or 30s. So I felt doomed. I was like, oh, my God, I don't see anyone that looks like me. And I made a promise to myself. I said, when I get better, I'm going to make sure that I help someone, because I needed to see a me when I was going through it. Because there was none. I had really no one to vent to. There was one other person that I had to vent to, outside of my mother, and she's a dear friend of mine. And she was kind of going through the same thing. She has myositis. Other than that, no one else understood. I just want to be a resource to help others, because you feel very alone. There's no roadmap. No one tells you when you get a chronic illness, what do you do? People are in the middle of their careers; you could be doing anything, and then there's this monkey wrench thrown into your life. And then what happens now? You're not even financially secure to deal with it. No one wants to help you. Because in order to get help, you have to look almost half dead. But what about if you don't want to get there? What about if you're trying to do everything that you can so that you don't get to that place? What about if you just need assistance with your bills? Just something. There’s nothing for us. Now I feel like there's definitely more community because you have social media, and you have people that are just like reaching out. Which is wonderful. Because outside of work, I was just work and home, work at home; I’d hardly see any of my friends. Online social media just became my thing, because that was my window outside. And it was great to finally connect, to find out that there were other people that were going through the same thing. When I found a myositis group on Facebook, I was so overjoyed about that, because I had no idea that there were other people that were going through the same thing. So I have my Instagram, @PrettyGirlsGetSick. That was just because of the fact that every time I went somewhere, people would tell me, “Oh, you're such a pretty girl, you don't look like you're sick.” And I'm just like, well, what does sick look like, because I'm sick. So what does that look like to you? Sometimes I almost felt just disrespected when someone would tell me that. so right now, I have the Instagram, but I also have a Facebook group, Pretty Girls Get Sick. And I try to be as open as I can. On Instagram, I've met a lot of different women that suffer with things. But at the same time, sometimes there are private conversations that you want to have that you can't necessarily have in a safe space on Instagram where I have a group, where it’s a few of us and that we talk. People just need to know that they're not alone. Because I felt very alone. Even though I had friends, even though I had family. If you're not going through something, if you're not going through the same thing, or experiencing something similar, you have no idea how it feels.
Lauren: Well in many ways, you're filling the gaps that the healthcare system has left behind. You’re providing resources, advice, education to people who are in the same boat as you who don't have access to that information. It makes me wonder as well about the health care system. I know we've talked about it a little bit already, but I'm wondering if you think that the health care system … is it even working for people at all? Are there positives, as well as negatives? Where do we stand on the US healthcare system right now? Are you allowed to tell us your opinion? Because I know you work in health care!
Michole: This is the great thing, this is why I love what I do. Before I would just go to work and it was very repetitive. I would see patients. I deal with a lot of hospitals; I've been in so many health systems across the country. Before, I never understood what it was to be on the other side. So I would visit patients, I would see them.
You heard their stories and you felt sorry — but now I know how it is to definitely be on the other side.
But from my personal experience, as far as what we do well … even though my disease is rare, I feel like we diagnose very well.
Lauren: Almost too well, maybe? Like getting the wrong diagnosis to start with?
Michole: Right? I feel like we have the tools that we need to diagnose and be diagnosed, and we have the medication to treat. But where we fall short is that we're not curing the disease. It's just, like … okay, we found out this is what you have. These are the treatments that we can use so you can have your new way of life. But we're not getting to the root of it. Usually, you’re trying to find our own answer, on your own. You may go vegan, or you may do other things on your own to try to help yourself. But I really wish that we could get to the point where we're actually doing some research to cure it, and we're just not managing the diseases.
Lauren: Funding is not getting out to people in the right way.
Michole: Exactly. I feel like that's where we're lacking.
Lauren: Absolutely. I think that's a really good point. So I want to do some Top Three lists with you — because I love to use this as a quick way to get to know the people on the show a little better, as well. And I wondered if we could start with a Top Three list … I want you to tell us, if you were talking to yourself 10, 15 years ago, or to someone who's either in the middle of this chronic illness journey, or maybe just starting out. … what Top Three Tips would you offer for someone who's living with invisible illness, in terms of getting to the place where they're feeling more in control and thriving more in the way that you are?
Michole: Take care of yourself. And know when to say no.
Michole: I'm a person … sometimes you want to please everyone. And you're at a point now where you're vulnerable.
Lauren: That’s its own chronic illness, that people pleasing, isn't it.
Michole: It is. It really is. You were at a place before where you could probably please everybody; you could live up to certain expectations. But now you can’t, because you're dealing with your own thing.
And it was very hard for me to just say no to people, and not feel terrible about it.
I was saying no, and then I’m, like, Oh my God, I feel so bad. And I’m, like, why am I feeling bad? I can't do it. Because this is not going to be good for me, and if you don't like it, then okay … a real friend is going to respect how you feel and not take it a certain way, and still be there for you. That's what I would say to someone. Be there for yourself, because now you have to do what's best for you. Put you first. We always say put yourself first, but no … really put you first. Because if you're not good, then you can't be good for anyone else. You need to rest. That whole “I'll sleep when I'm dead” … I can't stand it. I hate it. I've never been that type of a person. But definitely now, you have to just take care of yourself.
Lauren: Prioritize. Boundaries and priorities.
Michole: Yeah, you have to. Because that's the only way that you're going to be okay, and live your life. The doctors are going to help you. They're going to do what they can do. But you also have to partner with them so that you can live your best life. I think that sometimes people are waiting for this magic pill. And you're thinking that they're going to have all the answers, but they don't. And sometimes you're not going to get the answers. And sometimes things are not going to work out. But what can you do to help yourself, and just create that environment? Sometimes you're going to have to let go friendships that you probably thought were going to be around forever. You're going to have to let them go just so you can be a better you.
Lauren: And that's okay.
Michole: Yeah. And you need to learn that it's going to to be okay.
Lauren: Yeah, I love that. What else would you offer as advice? That sort of three-in-one, isn't it — boundaries, priorities, it's going to be okay.
Michole: I would just say … I have just been blessed where I have a really good relationship with my physicians, even down to my primary care. He’s seen me since I came out of Pediatrics. So when I got sick, he took it very personally; he was, like, “Oh my God, how did this happen?”
But I would say, try to develop a relationship with your specialist — because they kind of become your family.
Because they're helping you, they're monitoring your care. And in any way you can, take notes. Don’t just come to the appointment with nothing to say; keep notes in your iPhone, or if you've had a flare or even if you notice something that you think can help you, bring that to them. It's about developing this relationship. Because they become part of your family. I've been with my rheumatologist now for several years, and I feel like I can't live without her. Even when I think about moving sometimes, I'm just, like, oh my God, I'm gonna be leaving my doctor … I don't know.
Lauren: That’s really scary, too, yeah.
Michole: It’s very scary. Just be be your own advocate. Everybody's journey is a little bit different. But that's what worked for me. And I think that's why I'm at the place where I'm at now. But even if you see me well, or looking well …
Lauren: … don’t assume.
Michole: Don’t assume. Really. Yeah.
Lauren: One more Top Three, and this one's my favorite. Top Three things that give you unbridled joy. I know you mentioned taking vitamins and going vegan and things, to help control our health.
Michole: I'm not vegan!
Lauren: No, you're not. You're making lifestyle adjustments is my point. Like, when you get chronically ill, you often control what you can, right. And so despite lifestyle changes, Top Three things that light you up, that you turn to for joy. Whether it's a comfort activity when you are having a flare, or an indulgence that makes you feel amazing. What do you turn to?
Michole: Well, one thing about me, I love to take care of me!
Lauren: I love this. I’m super aligned with this.
Michole: I’m very into self-care. I love to travel, outside of work I love to vacation. I love to go somewhere. I'm not the adventurous type; I don't do any of that. But I love to go somewhere and relax and just sit by a pool, the ocean, and just relax.
Lauren: This is my kind of vacation. I'm coming with you!
Michole: Yeah, I'm very much into vacations. When my friends want to do extra stuff, I always tell them, “Go ahead. I'll be waiting here poolside when you get back. I'll be here with my pina colada.”
Lauren: You also just named my favorite drink. I knew we'd be friends!
Michole: I love to vacation. I love spas. I'm a big spa girl. Like right now, with this whole COVID thing, I'm just, like, oh my God, I need a massage.
Lauren: I know! Like, if someone doesn't rub my back soon, I'm gonna lose it!
Michole: I know. I need a hot stone massage. Like, what am I gonna do? The next thing I would say is, because I live in New York, there's so many different restaurants here. I love to dine out. I am definitely the brunch girl, the dinner date girl … with my girlfriends, I’m the type of person, I will go by myself. I love to just dress up and go to different restaurants, explore the city. Those are the things that I love to do when I'm able to do it. It's not doing a lot. You have to live your life, though. It’s a new normal.
So I'm not able to do all the other activities. But these are things that bring me joy.
These are things that I love to do for myself.
Lauren: You’ve named my top three favorite things.
Michole: Yeah, that's it for me.
Lauren: I love it. So what is your ask for listeners today? What can people tuning into this episode do to support you and support the polymyositis community and all of your advocacy work?
Michole: I just want to change the minds of how people view disabilities in general. Like the handicap sign. It needs to be redone. Yes, still have the wheelchair image, but there needs to also be a person standing. Just to change the minds of … what does a disability necessarily look like? And again, just that invisible illnesses need to be taken seriously, just as other illnesses are. And that a person, just because they may not look like it, that doesn't mean that they aren't suffering. They could just really be trying to make it through the day. Because they have to. It’s usually embarrassing for us to feel like you have to go out and say it, but we usually do because no one's going to believe us. And I would say, just be nice. You never know what someone is going through, don't automatically judge. Even my mother, she even said that at one point, she missed something. When she looks at people that maybe go into a handicap space and she can’t see anything physically wrong with them, she had to step back and say, “Wow, but this is how people are viewing my daughter. And I know what she's going through, because I'm definitely seeing the bad days when she can't even move.” I just would like there to just be more awareness, especially when it comes to polymyositis, because it's so rare. There's not a lot of people that have it. And when you go to see physicians, usually a lot of people do not know what to do with you. So sometimes I want to branch out and maybe move, or go someplace else. But at the same time, I'm very scared to necessarily branch out. Because I wonder, am I going to find another health system that can take care of me? And on the treatments that I'm doing now? And if these treatments all of a sudden don't work, are they going to try to figure it out? So there definitely needs to be more research. And I just want people to know, when they get diagnosed with polymyositis, that it isn't the end. There are people that are still living full lives. It might look different. And don't let people say, “Oh, it could be worse,” because this could be the worst for you. They just need to watch their words when they say that. We do know that it could be worse. But for me, this was the worst. I just want to encourage those that it isn't the end. It's going to be hard as you're going through it, but don't think that you necessarily have to quit. That life is over. It's not. It may look a lot different. And things are going to change. But you can get through it.
Lauren: So last question is, what’s next in your advocacy and your wellness journey? What does that look like for you in the future?
Michole: Honestly, I'm just trying to take it day by day. In a COVID world right now, with everything going on, I feel like you can have all these plans. And then everything is just at a stop. So the best thing that I can do for myself at this moment, is just take care of myself.
Because I want to be able to say that I lived through COVID several years later, and say, wow, this is what happened in 2020, and I lived through that.
That's just basically where I'm at right now. With my own little personal goals with work, and I'm just happy to be here. Because there were times when they said that I wasn't going to make it. And so every day that I'm alive, I truly have to thank God. Because without him, I really don't know where I would be.
Lauren: Yeah, faith has played a role for you, for sure.
Michole: Yeah, it had to. Because depression is very real when you do have a chronic illness, and at no point was I ever offered, “You need to see someone.” Different specialists for different things, but no one ever asked me, “Are you okay?”
Lauren: Well, there's one way in which the health care system could improve — mental health care for all. What a radical concept.
Lauren: Well, Michole, remind everyone where they can find you online.
Michole: Well, you can find me on Instagram @PrettyGirlsGetSick. And I would love for anyone to join my Facebook private group, Pretty Girls Get Sick, on Facebook.
Lauren: Perfect. And we'll link to both of these on the website page for the episode as well. And thank you so much for sharing all of your vast knowledge with us today, for sharing your story. I'm so thrilled to have had you on the show and really, truly grateful. So thank you.
Michole: Lauren, thank you. Thank you for having me.