The Chronic Boss Collective: The Best Community You Never Wanted to Qualify For!
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Kara Wada, MD: Welcome back everyone to this episode of the Becoming Immune Confident Podcast. Hey, it's Dr. Kara here, board certified in allergy, immunology, lifestyle medicine. And I also happen to be an autoimmune patient. And we have incredible guests and conversations on this show. And I am so excited to introduce you all to a real powerhouse in the autoimmune and chronic illness community that I am just thrilled to have been able to work with over the last year or so and really connect with just an incredible human being.
Introduction to Lilly Stairs - founder of Chronic Boss Collective
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Kara Wada, MD: I'm so excited for you guys to meet Lilly. Lilly Stairs is an internationally recognized patient advocate, serial entrepreneur, philanthropist, and sought after speaker. Her purpose was ignited in a hospital bed after being diagnosed with multiple autoimmune diseases.
Lilly is the founder of the Chronic Boss Collective, a networking membership for ambitious business women living with chronic conditions designed to help them dream big in their career and prioritize their health with no trade offs. And I am just thrilled to be a part of this community and a part of the founding membership.
We'll talk more about that. She's also the founder of Patient Authentic, a boutique consultancy that helps healthcare organizations build events and experiences for patient advocates. Lilly serves as the board chair of the Autoimmune Association, the world's foremost nonprofit leading the fight against autoimmunity, and a board member for the Brain Cancer Research Alliance.
Lilly resides in Boston, Massachusetts, and outside of her work passions, which include food, wine, HIIT and BARRE workouts, psychological thrillers, and everything by the water. Thanks so much for taking time. I know you are super busy. And I'm so glad to connect and have this conversation together.
Lilly Stairs: Thank you so much for having me. I am such an admirer of everything that you do. You've really carved out such an important space in the autoimmune and immune world. And so I'm excited to be here today.
Lilly's autoimmune diagnosis journey and the lack of awareness around the term "autoimmune disease."
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Kara Wada, MD: I'd love to know, you know, take us back. How did your autoimmune diagnosis really transform where you kind of were in your life and, I mean, it sounds like from what I've heard from you before, it really ignited a passion for patient advocacy, but I'd love for you to share more about that.
Lilly Stairs: Yeah, I was diagnosed back to back with Crohn's disease and psoriatic arthritis at the age of 19. And I had a very, very severe onset. The psoriatic arthritis was total body to the point that my mom was dressing me and feeding me and the Crohn's disease left bleeding ulcers in my small intestine, which made even swallowing water agonizing. And it took a number of years as it does for many folks with autoimmune disease to find the cocktail that works for me and get everything under control. But yes, it really did change my world. It turned my world upside down. And I remember when I was lying in the hospital bed after I had received the second diagnosis of Crohn's disease, technically third, because when I was seven, I was diagnosed with psoriasis.
So at this point I now have three autoimmune conditions. Uh, but I remember Googling the conditions and seeing the term autoimmune come up. And I'd never heard it in my life, and I was so angry because there are over 50 million Americans who are living with autoimmune conditions. But you know, how is it that I had never heard the term? Um, and so I really, as I say, I didn't know what a patient advocate was, but it was really in that moment that I became one in and a fire was ignited.
The importance of looking at autoimmune diseases from an umbrella perspective and breaking down silos in healthcare
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Kara Wada, MD: It's, I think so challenging within our medical system and how siloed it is to really kind of take a step back and have someone look at that patient's health conditions from that airplane view and that more holistic view and say, Oh yes, actually what unites these things together is the immune system not functioning right.
Lilly Stairs: Totally.
Kara Wada, MD: Yeah.
Lilly Stairs: And, it is. That the silos are, they're killing us because, it's leading to misdiagnosis and when you have multiple conditions, managing between specialists is a real challenge. And, it's disappointing and frustrating because there's so many treatments and medicines and different lifestyle accommodations that one can make that actually are going to treat and manage multiple autoimmune conditions. And so when we look at them from an umbrella perspective, we're able to really move the needle further. And so my goal is that we're looking at autoimmune diseases like we do cancer, right? There are all different types of cancer, but there's an American cancer society and we all understand inherently what cancer is and understand that it's all interconnected, no matter which body part it impacts and that's the same for autoimmune disease.
Kara Wada, MD: And, it's not, and I'm going to say this not to take away from, you know, what the cancer community has done, but I think there are so many lessons we can learn and then apply in regards to coming together and advocating for more funding for research, for, you know, for care, for all these things. Sometimes it's daunting thinking about what you need to get done.
Progress and Hope in Autoimmune Research
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Lilly Stairs: There is some hope. There's been some real progress in the past year. There was actually an office for autoimmune disease research established out of the NIH. And this is the first time that we've ever seen this, which is, that is disappointing that it's the first time that it's come light, but we have that now. And now our priority is trying to get a funnel more funding into that so that we can better understand the basics of autoimmunity. And interestingly enough, it actually sits under the Office of Women's Health Research, because 80% of people with autoimmune diseases are women.
Kara Wada, MD: I think one of the other places and spaces that for me has inspired so much hope, you know, sometimes when I'm in the office, like, you know, coming against like the brick walls of prior authorizations or like the day to day grind, right? Like it can be like, just a little bit soul sucking at moments.
The inspiration behind the Chronic Boss Collective and creating a supportive community for ambitious women with chronic conditions
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Kara Wada, MD: And yet, when I come in to interact within the chronic boss collective, we really have this space where everyone is coming together to help one, navigate our careers as humans living with chronic disease, but also so many of us in that community have similar visions and goals for what we want to see like better in this world too.
Lilly Stairs: Yes. Yeah. Oh, I'm so glad that you said that. And, it's been amazing to watch all the interactions, and they're really the caliber of women who are in the collective and to your point, who want to give back, who want to make an impact.
Kara Wada, MD: What inspired you to create this awesome community?
Lilly Stairs: I have always been a really ambitious person, and I was diagnosed at the dawn of my career. I attended Northeastern University, which is a school that integrates co-op programs. It's a big part of what we do. We spent six months in school and six months on co-op. And so, um, you know, I really was diagnosed and then thrown into, okay, career and school at the same time. And I just throughout, so I've spent the past over a decade working across the healthcare ecosystem. I really wore my conditions on my sleeve and would talk about them. And I leveraged them as an asset when I was interviewing for jobs and talked about how it made me a better employee. And so anyways, throughout all this time, I am this ambitious person living with chronic conditions and it, there are groups that exist. There are Facebook support groups. I never really jived with them. I felt like people were getting stuck in a lot of cycles of negativity. There is a time and a place for those, and I believe that they serve an important purpose for many people, but they were just not for me. And what happened was because I was working professionally and I wore my conditions on my sleeve, other women would open up to me and say, Oh, I actually have Crohn's or I have depression or I have, uh, whatever it might be. And they are crushing it, doing really amazing things in their career. And I thought, wow, what if we could take all of these women who are very successful in their career and who are living with a chronic condition and brought them together because I just believe there's such a magic and now I've seen it as we've launched and come to life. There is such a magic to a woman who lives with a chronic condition and chooses ambition because you had to go through hell to be where you are today and some days you still do, right?
You're still really like, you're really going through it, but you're managing to persevere. And a lot of these women also tend to be people who want to give back. And so it's just been amazing to watch this group come together and there really has never been anything like it that existed. So that's what inspired me to create it.
Kara Wada, MD: What I see are elements of, there is a somewhat super secret, informal collective of women physicians with chronic conditions that is assembled. And we joked to people who kind of, who find us, that it's the best community you never wanted to qualify for. But it's also right. Although we are diverse in our backgrounds, in other ways, we all are physicians, right? And so, what I love about CBC is I get a lot of those same experiences of the best club you never wanted to qualify for, but also the immense diversity in our skill sets and our creativity and our, you know, our careers and, um, our zones of genius and without what I lovingly, I can't take credit for the term, but refer to as the Suffering Olympics that sometimes you'll see in other spaces that for me also was just not serving me in a good way in my health and healing and all of those things.
Lilly Stairs: Yeah. Oh my gosh. And I love that way that you've described at the club. You never really wanted to be, would never want to qualify for. It's so true. And yeah, we're leading with our business and our careers or a business work group.
We also happen to have these chronic conditions and that does impact the way that we show up. Um, and so how do we learn to navigate that? And I agree. I really love the diversity of backgrounds, of careers, of, you know, we have entrepreneurs. We have a number of folks who are working professionally, doctors, lawyers, teachers. We really do, we really span the gamut, and there's so much that we can all learn from one another based on the differences between our careers and our conditions. I mean, we look at autoimmune, mental health, ADHD, and neurodivergence. There's so much there too in the way that folks who are living with ADHD or have neurodivergence see the world. Uh, and so I think that's been really interesting as well.
Kara Wada, MD: Uh, I would totally agree as someone who was just diagnosed at 39 with ADHD. Yeah.
Lilly Stairs: I keep hearing of people getting diagnosed in their 30s and 40s for the first time.
Kara Wada, MD: Yeah. And, I don't think I've talked about it on the podcast to this point, but really it was seeing and recognizing some concerns with my daughter that was like, brought it up with my therapist I was seeing at the time. And she's like, Ooh, go read this book and, uh, see what you think. And I was like, okay, I guess I'm making an evaluation for two. But you know, everything it's, um, I think with each new diagnosis or discovery, it just, It's more information. It provides new avenues of understanding yourself. And, um, yeah, I've learned so much more about how my brain works over this last, you know, four months or so that has been pretty interesting and, you know, not without its struggles, but pretty interesting.
Lilly Stairs: Yeah, yeah. Well, you'll have to connect with, there are a number of people in the Collective with ADHD, so you'll have to connect with them and chat with them.
Bridging the gap between patients and healthcare organizations through Patient Authentic consultancy.
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Kara Wada, MD: Absolutely. What do you think are the biggest misconceptions? You know, as we think about like the patient experiences and how do you bridge that gap and how with your consultancy work and with Patient Authentic?
Lilly Stairs: So a lot of what we're doing at Patient Authentic is around working patient advocates and empowering advocates to be able to advocate more effectively. And so through our programs there, we host events and experiences and classes that train people who are a patient who have said, "I'm raising my hand. I want to advocate. I want to make an impact." And we help them learn how to build their advocacy brand, how to be on social media, how to advocate on Capitol Hill, how to monetize their advocacy work. And so that's a lot of what we're doing over there. And there is some work on the insight side. It's so important. Another big piece of what Patient Authentic does is bring the patient voice into companies. And so, helping them to understand the patient experience and pulling those insights through into the work, you know, into clinical trial design, into commercialization and marketing commercials, and just ensuring that the company is really centered in the patient experience.
Balancing a demanding career, philanthropy, and managing chronic illnesses: non-negotiables and setting boundaries
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Kara Wada, MD: How do you balance a demanding career, your work in philanthropy and being on, you know, holding board positions and also living with multiple autoimmune diagnoses?
Lilly Stairs: Some days are better others. I'll be honest. I mean, it's not easy, right? I think a lot of the times it seems like, oh my gosh, Lilly's doing so much. I don't know how she does it all. And some days it feels like I can't do it all. And I try to be really transparent with, I have a newsletter that I publish every other week on Fridays and I try to be really transparent about what I'm going through and when things are tough. And I actually just went through one of those rough patches where I was feeling like defeated in a couple of areas and feeling like really run down. But the biggest thing that, so there are a couple of core things that I to stay on track across my business and my health. And that's taking care of me. I'm always getting seven to eight hours of sleep. That's a non negotiable for me. I am working out. That's a non negotiable for me because that's so important for both my physical and my mental health. And I am investing in my time and energy outside of work in doing the things that light me up. So I am spending time with family and friends and that's all really important. In the past year I invested in a business coach, which has been really instrumental in helping me to get some systems in place. I also hired a system strategist. So those two things have been really important from the business side to ensure that I'm able to continue because running two businesses at the same time and holding board positions, it's a lot. And so having systems in place so that I can have some things running in the background when I need to dial up in one business or dial back in another can be helpful.
Kara Wada, MD: You already hit on my follow up question was what were your non negotiable, so I am right there with you with the sleep. Like, goodness, I need that seven to nine, ideally eight to nine. And, um, we just came off of a trip back to visit my in laws and three hour time zone change. And it's interesting to reflect on how those hiccups along the way can come back and bite you when you're, you know, when you're straying from those.
Lilly Stairs: Yes, yes. A hundred percent. The other thing I will add that has been hard for me that I am working on, very actively working on is saying no. I have a lot in drawing boundaries. So with these businesses, I have a lot of people who are coming at me at any given time who want my time. And I have had to start to say, "I'm sorry. But no," because people, oh, can I pick your brain for 20 minutes or 30 minutes? And them it's 20 or 30 minutes. They think, oh, that's not a big deal. But when you have people reaching out to you every day, asking for that, your calendar can slowly be taken over. And so, it's been very hard for me as a person who is a people pleaser and genuinely wants to help. I'm a service centered, heart centered leader. It's been a challenge. But in order for me to best serve the most people, I have to stay focused in the highest and best use of my time, which is in running my businesses and growing my businesses. And having the programs through there that people can use to help them in their careers or whatever they're looking for support on.
So that's been a challenge me. I'm still on it. That's particularly challenging for many women. But I think it's important and I challenge people to look at your schedules and to say, " Okay, like what do I have control over right now? And how is my calendar being eaten up? And like, where do I need to maybe pull back? And who do I need to say no to so that I can reclaim some of my time?"
Kara Wada, MD: Amen. Before we hit record, I kind of mentioned, the theme of this year for me has been to work on simplifying and to like letting go of things that aren't serving me any longer. And, I mean, I agree that I'm in a similar space. I mean, I got an email yesterday. "Oh, Hey. Could you help me figure out what I need for testing? I can't come see you in Ohio, but I need to get this allergy testing." And it's like, you know, I want to be able to help and yet me spending 30 minutes of my time helping someone when that time could be spent with my kids. Or directed towards, you know, some other things, um, my patients that are coming to see me that I do have that established patient relationship with, that's what needs to take the focus. And, It's really hard to keep practicing saying no.
Lilly Stairs: It's really hard. I'm learning it every day and I keep at it every day. But I see that it's important as a business woman, it's a necessity if you really want to be successful.
Kara Wada, MD: Yeah. And I think you can bring it back to two, and connect it to even like the spoon theory, how are we best using our spoons? It may not even be, you know, related, we may be in a space where we're not able to maybe work because of our illnesses at some time, but how are you spending that currency, your energy, your time, your attention? Is it filling you up? Is it helping you or is it draining you faster?
Lilly Stairs: Yeah. It's such a good point and a great connection to that. It is, it's all about how many spoons do you have and where are you going to use them and you've got to be strategic about best use of time.
Advice for women with chronic conditions who want to make a big impact: finding your "secret sauce" and avoiding burnout
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Kara Wada, MD: What advice would you give to other women who are, you know, who are living day in, day out with their chronic conditions but they have that fire that like maybe it's just a little spark right now of a dream of making a big impact?
Lilly Stairs: Yeah, so there are a couple of things that I recommend. Uh, one is what I call Identifying your secret sauce. And that is acknowledging, yes, I have a chronic condition and yes, that impacts the way that I show up to work or in whatever endeavor you're going to go on, right? If you want to start something, if you want to start a nonprofit, if you want to start a social media channel that's making an impact, whatever it might be, there's that. And then you have a skillset. There's something that you're good at. Everybody has something they're good at, whether that be marketing or building or cooking. It could, it could be anything. Figuring out, okay, what's my skillset and what is the superpower that my chronic condition has given me? And when you put those two things together, that's your secret sauce.
So, uh, an example could be for me, when I was working full time, it was, okay, I'm really great at marketing and communications, that's my strength. As a person with a chronic condition, I have all of this lived experience and I'm working in the healthcare space. And so my superpower is that I can have empathy and I can build authentic relationships because I'm coming from a point of understanding. And so my secret sauce is that I'm a marketing professional who's going to help you build the company, build its brand around true, authentic relationships. And that was fuel for me because I was able to say, yes, I'm living with a chronic condition and sometimes that can get me down. But I'm also really great at what I do. And when I put these two things together, that's my secret sauce. And so that's something that I think is helpful to have in your back pocket for you to tell yourself on the days when things are tough. And then, uh, I also recommend that you come up with, you start from a space of, "Okay. What type of energy do I have? How many spoons do I have? What does my energy look like?" And figuring out how you are going to work around that so that you don't burn out and overwhelm yourself. And so really thinking through what is my day to day look like? What am I comfortable with?
Putting some systems into place that will help ensure you don't burn out. And I think that's really important. And remembering you don't have to do all the things at once. You can do it. Slow growth is okay. And I think in many cases, especially in the entrepreneurship space, I've been listening to a couple of podcasts recently talking about that entrepreneurship is the long game, you're playing the game. Success doesn't happen overnight. And so knowing that it can be slow growth.
Kara Wada, MD: Yeah. Oh gosh. I think so much of that resonates in missteps I've had along the way, you know over this last, you know, five, ten years of really living with chronic conditions, but not really knowing it for half of that time. And you know, and finding myself in a place of burnout and always like on that treadmill of, you know, trying to hit that next gold star, you know, achieve that next thing. Thinking that when I arrive at that place, that everything's going to be perfect. And then finally realizing that actually, nope, it is all about the journey and, uh, I don't have to rush to each next thing. I can just enjoy it, enjoy the trip.
Lilly Stairs: I love that you brought that up, uh, because so many of us, especially overachievers were chasing the gold star. " Oh, I did this. Okay. Now what's next? I want to get to this now." It's good to have goals, but yeah, you should enjoy, you should create a life. And again, especially if you've got this fire and you want to pursue something entrepreneurial, you want to enjoy it. If you're miserable every step of the way, then what's the point?
Kara Wada, MD: Isn't that the truth? Um, and I think, you know, at the core, you know, when you started the other little phrase that came to mind is that, you know, as cliche as it is, but it's turning your pain really into purpose. And there's so much science to say that that is, it's really helpful as we think about navigating life with any type of, you know, chronic condition or adversity.
Lilly Stairs: I couldn't agree more because it's there. It's not going away. You can either find a way to leverage it to work for you or you can sit in misery and complain about it and but that's only going to bring you down further and that's going to bring you down a black hole and you're never going to be happy. And it's okay to have that. It's okay to have bad days, to have days where you wallow in it and you're sad about it and you're mad about it. But you've got to be able to pull yourself out and pick yourself up. And to your point, having a purpose, turning that pain into purpose is a great way to pull yourself out when you're having bad days.
Kara Wada, MD: I've had a couple of days in a row where I was just, the lenses were a little, little cloudy. And then, uh, you know, I realized, "Oh, the sleep. Oh, also, about to be that point in my cycle," like, you know, all these little things. You're like, okay, all right. This
Lilly Stairs: I got it.. I hear you.
Kara Wada, MD: Well, this has been incredible.
Turning pain into purpose, enjoying the journey, and ways to connect with Lilly and the Chronic Boss Collective.
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Kara Wada, MD: If people want to connect, maybe they want to connect because they want to work on being a patient advocate or even better, they want to join us in CVC, where can they connect with you and follow you and find more information?
The best places to get in touch or you can follow me on, um, Instagram and LinkedIn. So we're @chronicbossco. Lilly Stairs. I have two L's. Stairs, like going up and down on Instagram, @lillystairs. And then at Lilly Stairs on LinkedIn. We also have chronicbosscollective.com and lillystairs.com. And those are all places where you can find us. Patientauthentic.com too. We do have events that come up and sometimes with Patient Authentic we have opportunities to apply to participate in the events. Some of them are more of a closed invitation though so it sort of depends on what's running, but those are all the places that you can get it touch.
And we will make sure to link to all of those in the show notes and hopefully we'll hear from some of you. When we're having one of our next little, there is a lot of fun virtual, professional development and networking and all these fun ways to connect.
Lilly Stairs: Yes. Tons of ways to connect, uh, in the Collective. Definitely check it out if it's something that you're an ambitious business woman, you're living with a chronic condition. We have a lot of programming. We have once a month, professional development, once a month, wellness, masterminds, there's a lot, there's a lot happening. So we hope to see you there.
Kara Wada, MD: Thank you so much, Lilly. Thanks for saying yes. I can't wait till we get to talk again soon.​
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