Not Just Patients

Balancing Professional Life and Chronic Illness┃Lilly Stairs

• Caitlin and Clarinda • Episode 13

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On this episode, we talk to Lilly Stairs about thriving in your career and managing your health while living with a chronic illness.

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. She is the Founder of Patient Authentic, a boutique consultancy that helps healthcare organizations build events and experiences for patient advocates, and the Chronic Boss Collective, a networking membership for ambitious business women living with chronic conditions.

Join us as we talk about the challenges of navigating professional life for people living with chronic illness, the value they can bring with their 'secret sauce', and how employers can cultivate a more inclusive and supportive environment that allows people living with chronic illnesses to thrive in their careers.

Chapters:

0:00 - Introductions
1:40 - Lilly's personal story
7:46 - Career motivations for people with chronic illness
12:19 - Challenges to thriving in professional life
18:09 - Challenges for patient advocates
24:54 - Perceived challenges for employers
27:53 -  Examples of workplace accommodations
29:35 - Benefits of employing people with chronic illness
35:39 - Career-focused initiatives for people with chronic illness
40:33 - Initiatives for employers to support employees better
46:51 - Advice for thriving in career while prioritising health
48:47 - Advice for employers
50:09 - Reflections with Caitlin and Clarinda

Resources mentioned: 

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com

Caitlin:
Hi, I'm Caitlin. 

Clarinda: And I'm Clarinda. 

Caitlin: And this is Not Just Patients. 

Clarinda: A podcast where we break barriers to meaningful patient involvement in healthcare. 

Caitlin: Thank you so much for listening today. Our guest on today's episode is Lily Stairs, and we're going to be talking about balancing professionalism and managing your health as a person living with a chronic disease. 

Clarinda: Lily 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. Lily 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 health with no trade-offs. She's also the founder of Patient Authentic, a boutique consultancy. that helps healthcare organizations build events and experiences for patient advocates.  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. 

Thank you so much for joining us, Lily. It's really great to have you here. 

Lilly: Thank you so much for having me. I'm so excited to be here. 

Clarinda: Yeah, I think that right off the bat when I'm reading your bio, the lines that say that you work towards helping  women  with chronic conditions, dream big, prioritise career and health with no trade-offs, it sounds almost too good to be true and I think that that's what we're here to talk about today because for Caitlin and I,  and I think all three of us on this call, we all live with multiple chronic diseases. Caitlin and I are both, we both consider ourselves business women. We try not to have trade-offs and we try to, you know, balance it.  And it's not always easy, you know, it's always a big struggle and it's really wonderful work that you're doing. And we're sure that a lot of people can benefit from hearing from you. So maybe you can just start with telling us your story and journey into advocacy and  what made you  focus so much on patients thriving in business and your motivations for that? 

Lilly: Yeah, so  I was diagnosed with Crohn's disease and psoriatic arthritis at the age of 19. I  had been diagnosed with psoriasis when I was seven, but  the follow-on to diagnoses were intense  and very severe onset. Arthritis was total body to the point that I couldn't move. My mom was dressing me and feeding me.  And then the Crohn's disease left bleeding ulcers in my small intestine. Couldn't even swallow water without feeling agonizing pain. So  very severe onset. And of course at 19, that's really the dawn was, was the dawn of my career.  And so I attending Northeastern university, which has a co-op program.  And I had a professor that pointed me in the direction of biotech and pharma.  And I said, what's biotech? I didn't know what it was.  And it turns out. These are the folks that are making the medicines that have  ultimately saved my life. So I have been in medically controlled remission for  over a decade now, which is amazing to say. And I feel so grateful for that. And that is because amazing industry that I get to work in and be a part of. And so  what was interesting though, in my journey into advocacy  was I remember I was lying in the hospital bed  again when I was 19. I had received these two diagnoses within six months of each other. And I remember typing them into Google and what came up, but the term autoimmune, autoimmune disease. I never heard that term in my life. And I was so angry because there are over 50 million Americans alone, just in America living with an autoimmune disease. And so I just felt like I, my passion was really ignited in that hospital bed. I didn't know  what being a patient advocate was, but  I really became one in that moment. And so that's where it all started. And then I had the professor that encouraged me to go into biotech  and  I started in communications and marketing and then  found my way into patient advocacy.  Right. Right.  And what about the angle of women in business? So where did that angle emerge? from and why that angle of your work? Yeah. So  I started my first business, PatientAuthentic, in 2020.  And when I started that business,  I  really got more engaged and involved in networking groups, specifically women's networking groups. And  I had always been a strong networker. It's what I tell people is so important if you want to have your own business or even  any career networking. Your network is your network.  And so  I  was a part of these women's networking groups  and it was interesting because I would sit in  different meetings and I was in some of the different online chat forums and I noticed that health wasn't really coming up that much  in these conversations. A lot of it was centered on  Of course, business, but I just thought about as myself that this is such a big part of my life.  And I'm interfacing all the time with all of these amazing women in particular  who are living with chronic conditions, who,  who, when I open up and share my story, just the number of women who come forward and share their story with me is  hundreds, thousands, you know, since I've started my career. And so I said,  there really is not a place  that honors ambitious business women. Well, also.  talking about the health aspect. And so  I wanted to create a space  that would allow women to come and be able to in one breath talk about their ambitions and building a career, building a business, while also holding health and talking about your health at the same time, especially when you're living with a chronic condition because everything is so intrinsically linked, right? Living with a chronic condition. very all encompassing. And so, you know, the idea became let's hold space for both of these things at once. 

Caitlin: Right. Yeah, I totally resonate with everything you're saying there, because as much as you'd like to separate the two, your health and your work, if you have a chronic disease and you live with it every day, it's, unfortunately, it's part of you, isn't it? It's something you have to deal with. So  of course it does impact your work and your career. So I hear everything that you're saying. And especially because a lot of chronic diseases often like to multiply, so people often have more than one.  Obviously,  in some situations, people therefore, that's what they can manage. And of course, that's perfectly fine. Not everyone with a chronic disease has to also have a career. A lot of people prioritise their health,  and that might change over time, depending on what stage of their life they're at, what stage of their career, what stage their disease is at, and how they can manage that.  So of course, it's everyone's personal preference and choice. But obviously  when you have a chronic disease, because that's something that's part of you all the time,  a lot of people do continue to want to have a normal life that everyone else has. So that's what we're talking about today. We're talking about people who  really want to have a career as well as having a chronic disease.  So I suppose my question is, and maybe this is something that we can all talk about a little bit from our own experience, but what motivates people with a chronic disease to want to have a career? 

Lilly: Yeah, well, we're all human, right? And so even when you have a chronic disease, we're all still human, just like the other people who don't have chronic diseases. And  when we think about what work offers us,  it offers connection, right? With others and with coworkers.  And if we're lucky,  it can offer a purpose and passion and fuel purpose and passion. So people want. to be in that and living with a chronic condition, can be  a great place to channel energy and even sometimes a distraction, right? From what you're dealing with yourself. I'll also say, unfortunately for many financial security is a huge motivation. Just thinking about all of the additional costs that one incurs living with a chronic condition  in the U.S.  access to healthcare is tied.  directly tied to work. that's how most people get their health insurance here. And so,  you know, that is of course a motivation as well.  

Clarinda: Yeah. Yeah. And I mean, speaking for myself,  I've always seen myself as, well, you could say workaholic  in the early years of my career for sure. I would use that label all the time in the early years of my career.  Even  post diagnosis.  I have a rare disease called neuromyelitis, optical spectrum disorder. I've had phases where I've prided myself on working through hospitalizations with drips in my hand and things like that. And I mean, now I would probably hesitate to  make those claims with pride. There is a balance that needs to be struck, you know, and I would prioritize self-care and all of that. But yeah, speaking as someone who comes from that place and it came from a place of loving my work, not just being a slave to it. but I  literally loved it and it was my passion and I enjoyed what I do. And  I always thought that I would only work for the love of work. Of course, money was a factor, but I loved what I did.  And  even having been diagnosed, it  didn't mean that I was gonna stop chasing my dreams professionally  or stop wanting to achieve all of those things professionally. And I'm sure that... that that is again a strong motivator for a lot of people. So that makes perfect sense that there are a lot of people still out there with their chronic conditions. And I think that that for a lot of patient advocates as well, that's  the confluence point you could say where they have these ambitions to work, to have meaning and purpose in their work,  and then also to bring them real lived experience into that. 

Caitlin: Yeah.  I think you've both hit the nail on the head.  People with chronic diseases want to work for the same reasons that anybody else would. guess maybe there's a thought that, you know, if you do have a chronic disease, maybe you should shift your focus or reprioritise your health.  But I suppose there's an argument that everyone should do that and maybe focus more on their  physical and mental health. It just might be that we have to do an extra little bit more to be healthy and maintain healthy. But prioritising your health doesn't mean giving everything up in your life. because then what's the point in being healthy in a way?  It's all about trying to find that balance and maybe that is a bit harder for people with chronic diseases, but it doesn't mean that they should necessarily therefore have to give up on their career goals. 

Lilly: Absolutely. And you know, it's interesting because you mentioned everybody really should be doing this, right? Everybody should be prioritizing their health.  And we are seeing that a lot of folks are not. And that's why we have these increased rates of burnout, which is, you know, now recognized as a mental health condition. And you know, what's also interesting is that we are not the minority, we're the majority. So again, I know we have an international audience here, but I know my US statistics best. so over 60 % of people living in the US have one or more chronic conditions. So we are the majority. so really, this is something that yes, everyone should be doing. 

Clarinda: Right, right. So what are Some of the key challenges you would say for people living with chronic diseases to thrive in their careers. And it's startling that you mentioned some of those statistics because it means that a majority of people are working through chronic diseases, perhaps thriving in their careers, perhaps not. But what would you say are some of those challenges that prevent them from thriving? 

Lilly: Yeah. So, oh my gosh, there are many.  Unfortunately, there are many that we need to work through and I'll speak to some of the big ones. So  one of the top challenges that we see is often this push and pull of to disclose or not to disclose.  are fearing this inherent bias and stigma that unfortunately exists when we hear the word disability or chronic condition and that can lead them to hiding, so maybe they decide not to disclose. And so now you're not bringing your full self to work. You can't show up. You're trying to hide certain parts of yourself, and it can make it challenging to navigate those parts of living with a chronic condition.  And then, of course, when you disclose, there can be fear that it will impact  the way that you are viewed in the workplace, and you may be treated differently. I would say another challenge is just the design, workplace design. It shifted a little bit with COVID,  but unfortunately, we're seeing it regressed backwards. So  we had this obviously big push of everybody being remote for quite some time.  Now we're seeing everybody being called to go back into the office. And so  that's an example  of how the workplace isn't totally designed for people living with chronic conditions and disabilities. There isn't necessarily that flexibility.  You need flexibility sometimes when you're living with a chronic condition.  It's interesting because that is why we see a lot in the Chronic Boss Collective and just in many of the conversations I've had with advocates, we see a lot of people  trending towards entrepreneurship  and choosing to be an entrepreneur because it gives them the freedom and flexibility to be able to prioritize their health because the current court environment doesn't support that. So that's certainly something. And then I would say also thinking about visible versus invisible conditions that play a factor too. So,  you know, I think that that can be a challenge as well. So those are just a few. mean, we could do a whole podcast on the topic.  

Clarinda: I think that the point you made about COVID is an important one, especially now that the norms are changing and employers are expecting people to come back. What's funny is that for decades when work from office was the norm, it's likely that people with chronic conditions, that's all they knew and they had kind of force fitted their  lifestyle into that framework, even though it was inconvenient and they kind of had made that work. But then they got used to a lifestyle that was much more convenient for them  and much more accommodating. And now it's just incredibly difficult for them to imagine having to force fit their lifestyle once again into that framework, right? And that suddenly requires them to almost change tracks, like career tracks or employers or all of that. And  it's like being given a freedom and then that being entirely taken away from you,  which is  much, worse than never having been given that freedom at all, I think. 

Lilly: That's great point. 

Clarinda: I think that's quite complex. 

Caitlin: Yeah, totally. And I think it's interesting what you say about, you know, people that they did get that flexibility. So maybe actually more careers or types of working became available, but now  that is bouncing back a bit and maybe more so than others, people with chronic conditions, maybe have to think about a career that fits in with their lifestyle rather than the other way round, because there are certain things that they can't necessarily adjust, for example. So if you're having to take a lot of medication or if you're not able to travel or not mobile or not able to work in an office environment, then unfortunately that may limit the pool if employers can't be flexible. So yeah, I understand the shift towards entrepreneurship. I just had a question about what you said about visible versus invisible diseases, because that's an interesting nuance, because I imagine that  with visible diseases, you know, people are more likely to understand that you have certain needs or adjustments because they can physically see your disability. But I assume that might also come with its own levels of discrimination, perhaps, even if it's unconscious. Whereas invisible, I mean, all three of us here, you couldn't tell that we had a chronic disease if we didn't talk about it all the time. But yeah, that must be a difficult nuance as well. People maybe don't know that you're ill and don't give you that benefit of the doubt. 

Lilly: Totally. And I think there's also, especially when you're thinking about something like an autoimmune condition where you can have days where you feel great and  the next day you're bedridden.  And that can be challenging for people around you to understand. Even if you do disclose, that can be something that's hard for people to understand because they'll say,  she showed up to work yesterday and she looked fine. And so there is that nuance. And unless you have somebody in your life or you've personally experienced it yourself. There isn't always that level of empathy and understanding.  And it can be perceived as laziness  or  trying to get out of something when that's really not the case. it comes back to we need more education  and resources  within the workplace. And I'm sure we'll talk about that  later in the podcast.  

Clarinda: So I'd like to switch tracks a little bit, Lily, and talk about patient advocates again, which all three of us are. And here's where it gets quite interesting because our disease defines our work in a very different way from work for most other people where you have a disease and you have work and they are kind of separate. They're not really intertwined the way it is for patient advocates.  Would you say that those challenges  are different or how do those challenges manifest in  a patient advocate's life when it comes to professionalism? 

Lilly: Yeah, so  it  adds a whole new layer of challenges, right? So you have those existing challenges that anyone maybe in the workplace has living with a chronic condition, but  there is a different set. And I think when you look at it from a what are the advantages, you're passionate.  It's fueling purpose and that's amazing.  But there are challenges  and  something I talk about a lot with colleagues and friends who are in the same boat is the emotional toll that it can take. can be very emotionally draining. I talk about how you'll often hear me introduce myself when I'm on a phone call. I'll talk about  the different things that I do. I say, I'm basically 24-7  patient advocacy  because it's literally both my businesses. I'm on two boards that are patient advocacy focused  and I'm with a chronic condition. So it's just the all encompassing for me. And  there are many times I love it and I, I love the impact that I'm making,  it has been incredibly draining. I actually personally experienced some burnout last year,  just trying to bring it all together. And I felt like that was all people saw me as right. Like it felt like it was my entire identity.  And I said, well, there's a lot of parts to me and I feel like that's getting lost. And so that was a challenge. And I think that's a challenge that a lot of folks face. And I know that there are other people who say, I can't work in my specific disease area because that is just too triggering and challenging. So,  you know, I think those are some of the challenges. I also certainly think like feeling this pressure that you're representing your community and you don't want to let people down can be really hard.  Sometimes you can just feel like there's a influx of people always reaching out to you and like, how do you create a boundary? You want to help people, but it's like, you can't help every single person sometimes who reaches out. So yeah, you can even hear it in my voice. It can be overwhelming and challenging. 

Clarinda: Yeah. Yeah. I hear you. 

Caitlin: Yeah. Yeah, totally. And I think something that's interesting speaking about almost the emotional and very personal side of it is it's something you have to be very, very vulnerable about as well. So your own medical history and how it affects you personally and  open up in a way that a lot of people wouldn't be expected to do at work. I think  sometimes I feel like I've opened up more on the podcast than I have to my closest friends and families about my health because it's important because I want people to hear, I want to educate them but while opening up about something that's really deeply personal  and that's really difficult and then the point that you made before as well For a really long time, I struggled with the advocacy side of it because I'd spent my life up till that point doing everything I could just to be myself. And yes, sure, I have a chronic disease, but I'm all the other things, so many other things except that. And that's just something that's part of me. Whereas then all of a sudden, if you start becoming a patient advocate, the thing that people know about you most or that you talk about most is the chronic disease you're living with. So it's really hard to... separate from it in a way that naturally you might want to.  

Clarinda: Yeah, yeah, totally. All of which both of you said resonates so much.  For me,  a couple of big challenges. So one, both of you spoke about was  reconciling  this part of me as a patient as my professional identity, because it was a part of me that I had kept completely apart from my professional life for the longest time. No one at work. had to know, no one at work knew, except for people who  really, really had to know. It was not something I hid per se, but it was not something that I went out and shouted about because it didn't matter. It didn't stop me from excelling at my work. I thought, you know, I'm just going to go out there and do my work. And when I'm sick, I'm sick. But then  my being a patient,  becoming my professional identity was something that I really struggled with and took a long time to come to terms with. And then once I do, then I become perceived as, or at least in my mind, I'm perceived as this super, super woman who's kind of overcome all these challenges and now she's out there doing all this. And even though she's a patient, she's there doing all this. So then it's even harder for me to have bad days, I feel, where I can just be a patient and not be an advocate or not have to like be out there on LinkedIn and not have to be  out there at a conference or, you know, put on my  best conference face  and speak and just say, I'm really not feeling well today because I mean, it's funny because that's exactly why I'm there to speak about being a patient and to speak my truth. And it's what I want to do.  But there's this sense that because you're one of those patient advocates, you're not  as sick. maybe or you you've overcome all those challenges and now you're out there and doing it.  I don't know, there are all these perceptions I feel that advocates have to deal with. I don't know if you feel the same way. 

Lilly: Yes, it's exhausting.  I'm hearing Clarinda, you say all of these, you're running down this list. I'm tired listening to it. You know, it's a lot to carry all at once, right? It's a lot to carry emotionally.  Emotionally and then also you're trying to execute on work and take care of your health. It's just, it's a lot to hold.  

Clarinda: Thank you for helping us feel seen and heard. 

Lilly: Of course.  That's what this is all about, right? The reason that I focus some of my advocacy work here is because I saw it as a real whole. You know, I just felt like support groups exist,  networking groups exist, but why can't we talk about the intersection of health and Health and wealth, as I like to say.  

Caitlin: Absolutely. So just to take a different angle on it then, because obviously, you know, we've all shared our experiences of being the person with a chronic disease having to work.  But what do you think maybe from the other side, so the employer's angle, what do you think may be their perceived sort of challenges in terms of working with people with chronic diseases? 

Lilly: Yeah, and I like that you frame this as perceived challenges because I think there's so many perceived challenges that aren't actually challenges, right? And  of course, there's this inherent bias that exists and that's what's impacting all of these perceived challenges. And  I don't think that people always know that they have these biases, right? That's why they're kind of inherent and  part of our culture. But You know, I think a big one  is productivity concerns, right? So maybe they're thinking people with chronic conditions, you know, they're going to have to be taking more sick days and they have to go to appointments. They have to do this and that. But what's interesting is I've personally found both as somebody in the workplace and then as someone who has hired other people with chronic conditions, they actually often work harder because they know their perceived bias. And so  they want to prove people wrong. And I think  all the people that I've watched in my life or when I've been in the workplace, who don't have a chronic condition, or I shouldn't say that, don't know if they have a chronic condition, but they're like maybe on Facebook or Instagram during the day. Like you can't tell me that there isn't productivity loss  for people who don't have chronic conditions. So I think that's there.  I think another huge one is cost of accommodation. And what's really amazing is that we now have some statistics on this  to tell us that actually,  The cost of making accommodations for people living with chronic conditions is  astronomically low. So there was a BCG study done  and this was led by Hillary Wool. She is a phenomenal patient advocate and does a lot around this  topic of disabled folks in the workplace. And so this study found that 56 % of accommodations cost nothing.  And then those that do  average around $500.  Wow. For most companies is nothing.  

Caitlin: Nothing. Yeah. 

Lilly: Even a small startup, even, you know, as a startup currently, you know, my second business as a startup that is  generating revenue, but not profitable. $500 is a  very reasonable cost. 

Clarinda: Yes. 

Caitlin: Yeah. Yeah. Especially, suppose, for the value that you then get  out of that person, which could be absolutely astronomical. 

Lilly: Exactly. Exactly.  So I think that that's a concern too. So those are some of the big ones that we see. And again, a lot of it goes back to being able to have these conversations, corporations, managers, employers having the right training around this to really understand what it means. 

Clarinda: Could we talk about what some of those accommodations might look like, for example? Yeah. So, I mean, certainly a big one  is the ability to work from home, right? Or work remote,  as we discussed. That's a huge one for people living with chronic conditions, whether you have a physical disability or invisible disability. I just think about as somebody who's immunocompromised,  and I used to talk about when my disease was active, taking the MBTA here in Boston, the T,  there wasn't always a space during rush hour for somebody like me who this arthritis, and who was very young, and doesn't look like I would have arthritis.  I'm not being offered a seat.  I actually worked with, an example of an accommodation with my employer was, and this was way before work from home became a thing.  I said, you know, could we shift my hours a little bit so that I don't have to commute at rush hour? I'm still doing the work. I'm still going to be here, but  I don't have to commute at rush hour. So come in a little later, leave a little later, whatever it might look like. And that was really fine. And I said, oh, thank you so much. This is so helpful. And they said,  it hasn't impacted your productivity.  the amount of work, so who cares, right? No one cares.  And so that's an example of something I would say also even just like ergonomic. So if you need some sort of  seat  or a standing desk,  I think that those are a couple of examples of different accommodations. 

Clarinda: Yeah, that's very helpful. Thank you. 

Caitlin: Great. So yeah, we've spoken a little bit about some of the challenges and maybe kind of some of the easy accommodations that you can make really for people with chronic diseases. But I wanted to kind of flip it a little bit and talk, and you touched on this maybe already, but are there actually benefits of working with people who have chronic diseases? 

Lilly: Yes, huge benefits!  And this is something we talk about all the time in the Chronic Boss Collective.  about flipping the script  on what to live with a chronic condition and owning the narrative. And we have a specific tool that we use to  get folks in the mindset  of, yeah, actually my chronic condition is an asset to the workplace. So I've developed something called your secret sauce. It's a formula that takes something you've learned from living with a chronic condition. So I call that your superpower.  And then you pair that with a skillset that you have.  And that is your secret sauce in the workplace. So I'm going to give you some examples of what that looks like.  Lauren Perna, who is the chief community officer of Chronic Boss Collective, she also is an amazing entrepreneur and runs her own communications firm.  She has anxiety  and her anxiety, she said, you know, her superpower is that she harnesses that for customer service, like she's taking that anxiety, and I can tell you because I've hired her for patient authentic.  She's super responsive like she is so on top of it because she wants to deliver because she has this like heightened sort of state, anxiety, and then she pairs that with her writing skills and that's her secret sauce.  Another example  is adaptability. I talk about this all the time, so so many people with chronic conditions  learn how to be adaptable and flexible, right?  you because we don't have a choice.  so somebody like that would be great for working in a startup where things are always moving and changing pace. Like you can keep up with it.  Another one and somebody who is adaptable,  Justine Beauregard, she's amazing. She's a sales coach. She's a member of the Chronic Boss collective.  She says, you know,  her zone of genius and her superpower is creative problem solving. Her skill set is sales. So her secret sauce is that she's super adaptable in any conversation. She finds fast workarounds and she's got a response to everything.  And she talks about how this was born from having multiple chronic health conditions and feeling like she had to be good at solving for struggles when times got tough.  So these are all examples of how we can take these these superpowers and skills that we've gained living with a chronic condition,  pair them with what we are good at and our applicable skills in the workplace  and flip that script to say, yeah, I'm going to disclose that I have a chronic condition, but let me tell you why that's an asset to you.  I would even recommend doing that, like I did that in interviews when I was interviewing different roles, I would talk about it. And granted,  mine did have a little bit more of a direct parallel because I was in health care. So that's why I like to do some of the  outside of healthcare.  I would talk about how me having these chronic conditions  made me empathetic and I was in communications and marketing so I said I'm gonna be able to connect and relate to the people that we're trying to reach and so  I think it's a way to help people maybe feel a little bit more comfortable when they're at that moment where they need to be dealing with disclosure and the ability to  frame it in a positive light.  

Caitlin: I really love that and I think I did that too without even really knowing about it. But I think also what's quite powerful is a lot of people maybe think about their own chronic condition. And I found myself in this hole before of what did it take away from me? And what did it take away from my life? So it's quite empowering from a personal angle as well to say, but what did it give me? Yeah, yeah, for sure. And I think that's really cool from an employment perspective and a career perspective, but also just from your own personal perspective, like what's the silver lining here? Because having a chronic disease, whether it hit you sort of in adulthood or whether you were born with it, I do believe that that experience changes you in some way.  Maybe sometimes a little bit for the worse, maybe sometimes for the better, but you can take those things and use them to your advantage in terms of, you know, what does it give you that makes you really valuable? in the workplace or just elsewhere in life. 

Clarinda: Right. And speaking from my own experience, I can say that I've always brought excellence and drive to my work, but the kind of passion  and meaning and purpose I can bring to patient engagement and patient advocacy because of having lived through that. So my own story is that because of my research background, I was able to bring research papers into conversations with doctors. And then I felt that other patients don't have that and that's something I want to give other patients. And that's what got me into patient engagement. And that's not the kind of motivation that anybody who's not had that can bring, right? It's such a unique motivator  that I know that the level of passion that I bring is higher than it's ever been in any other role that I've played. So I can completely understand that I'm definitely more of an asset than I would have been. in any other role, even if I work with the same level of excellence. So I love that framing. 

Lilly: I love that you both have a fabulous secret sauce. And so now you can take that everywhere you go. 

Caitlin: Yeah, I think mine's just stubbornness. I cannot let my chronic disease stop me from doing whatever I'm doing, because yeah, mine's a bit different. can't reflect backwards because I was born with mine. Yeah. So it's just always been there. But I think maybe that's always been a part of, can do it, anyone else can do.  And that's probably driven me a lot more than had I not had it.  yeah, I guess I'll never really know, but I think that's at least part of it. 

Clarinda: That's true. 

Lilly: Yeah, I love that. And stubbornness probably also was happening throughout your health journey, right?  

Caitlin: Absolutely. Yeah. 

Clarinda: Makes perfect sense. 

Caitlin: My doctors would all agree.  

Clarinda: So Lily, why don't we move on to talking about some initiatives that are helping  people living with chronic diseases move forward in their careers. You mentioned the Chronic Boss Collective. We'd love to learn more about what it is. You've touched upon it a little bit, but also any other initiatives that you can speak about, including  policy level initiatives that might exist. 

Lilly: Sure. So yes, at the Chronic Boss Collective, we are a membership for ambitious business women living with chronic conditions. so  folks have the opportunity to join. We have a private online community and we host professional development, networking, and wellness events. So we do a  monthly mastermind where everyone can come on and they can bring their ideas. We have somebody present in their zone of genius just to give some professional development and support. So we actually did one,  February's was on boundary setting and we have some coming up on really being a financial powerhouse and we have others coming. building a brand,  then we did a vision boarding  in January. So that type of thing. And then we have folks come on and they can bring their questions that they have. And we harness the collective power of the group to help support them and masterminding a challenge they're facing in health and work or the intersection of both.  And we also have the members can run events. The big piece of it though is the community, right? It's connecting with other like-minded people who are again, ambitious business women living with chronic conditions because there are a lot of us,  but it's a unique group. There isn't, again, necessarily a space where folks are coming together. You could go to Facebook support groups or a patient advocacy organization, or you could go into a networking group for professional, but there isn't that intersection. So that's what we're doing.  And then there's a ton of great initiatives that are happening, which is really encouraging to see. So Career and Chronic Illness, which is run by Michelle Irving, who is also a member of the Chronic Boss Collective. She's based in Australia and she's doing really groundbreaking work in this space. She offers some really fantastic coaching for  women living with chronic conditions and navigating their career. She also has a content hub around this and she's doing some training for employers.  Making Space, Keely Cat Wells, she is...  She's from London,  based in LA now, and she's helping support people living with disabilities in the workplace, doing some trainings for them, helping them with their career. They're also doing some great work in representation in the media for people living with chronic conditions. And then I would also say Chronically Capable is another great organization, and they actually help folks  find careers. It's a job search platform just with vetted companies that are supportive and inclusive of hiring people living with chronic conditions. 

Clarinda: That's great. I've never heard of them, but I will be sure to check them out. It's wonderful to know that there are such great initiatives supporting people living with chronic illness. And I'm sure that a lot of our listeners are going to be excited to hear about those and check them out as well. 

Caitlin: Yeah, just to follow up it, it sounds like there's lots of amazing initiatives out there to help people, which is really fantastic.  Hopefully, you know, if anyone,  particularly maybe if anyone wants to change career or they, you know, find themselves being diagnosed with a chronic disease or maybe their chronic disease progresses, I feel like that's something that's a really big change and would affect your career. So I think it's really cool that there are things out there to support people through that.  Because like you say, you often don't maybe know if someone else is living through a chronic disease.  We might all be working with people at the moment who we don't even know is living with something.  And that means that it is really hard to find that network and find people who you think understand and are going through the same thing rather than just trying to struggle it out on your own and not tell anyone that you're working with that you're struggling in case they perceive you differently or not as good a colleague or not able to cope with it.  It's really cool that there are things out there where we can. have a platform to share those struggles and help each other. So I think that sense of community is going to be really, really important.  And on such a great topic as well, I think a lot of the time, if you do live with a chronic disease, there's lots of health support out there, you know, how to  manage your health. That's what a lot of patient advocacy groups do.  But a career is something that's very nuanced. And even though they might offer some sort of support or how you could talk to your employer,  it's great to speak to people who have had the same challenges or worries or imposter syndrome that you have. So that's really cool. My next question is just, are there any initiatives available, again, on the flip side for any  employers or colleagues who may be working with people with chronic disease and  want to be able to support them better in the workplace? 

Lilly: Yeah. So all of the initiatives that I mentioned for people living with chronic conditions actually generally have an employer side too, right?  You know, Chronic Boss Collective, we encourage people to engage with us and they can support, they can actually pay for their employees to be members of the Chronic Boss Collective.  And then Chronically Capable, they have the employer side where you would be signing up with them. So those are all in there. I would say the BCG report that I mentioned previously, led by Hillary Wool, they have a great report. Like that report is free to review and they actually give you some strategies and recommendations for how organizations can begin implementing an inclusive workplace for people living with disabilities and why that's valuable. So I definitely recommend employers check that out. Disability In is another organization that is working to advance disability inclusion in business. They actually have their own disability and verification program for entrepreneurs  who have their own business with disabilities. They also work with companies and employers to help them be more inclusive. So they have programming around that.  And then Disclo, which is founded by the same woman, Hannah Olson, who founded Chronically Capable,  they are working to make workplace accommodations seamless. So  if a company partners with them, they help make it easier and they have a tech platform to help people disclose in the workplace and make it more comfortable.  So I would say those are some really, really great resources. And then if it's, we're thinking about just colleagues or employees,  I think them even just following some of these things on social media to learn them and just better understand the patient experience  could be really valuable. 

Caitlin: Awesome. 

Clarinda: Yeah. Great. And I'd like to just speak a little bit about an initiative that I'm aware of through the Global Patient Advocacy Coalition for Headache, which I'm a board member for. So they've done a huge program in association with the information technology company Fujitsu in Japan to promote migraine awareness at the workplace. And over 70,000 employees participated in the program.  And the response was phenomenal. They've published a paper on it.  Essentially  just the awareness of migraine and the workplace and  raising awareness of the condition helped increase productivity significantly. People were a lot more willing to be accommodating  of other colleagues who had migraine, the understanding that it is a very common  neurological condition that is not a headache, change perceptions and reduce stigma tremendously.  Yeah. And so. It's not rocket science and it does not require massive  revolutionary changes.  think it just requires employers to take small efforts towards education and awareness  that can have huge, huge impact. 

Lilly: I  love that. Yeah. Yeah. 

Caitlin: And I just, I just say, I love that there are so many resources and things out there because it's really hard from the perspective who hasn't had to deal with a chronic disease.  for you to fully understand or know what people are dealing with. So  it's great that these resources are available and  we'll link them all in the podcast for our listeners, for anyone who wants to look into any of those.  So yeah, click below.  But  I think as well, just what I've been thinking a few times about this conversation now is just generally  always sort of be aware that... other people are going through things that you don't know, especially in the workplace, like they won't be sharing their personal lives with you.  And therefore you shouldn't judge them. And that's not just true for people with chronic diseases, but of course, if someone in the workplace has young children, of course, like people understand that they might have responsibilities and things outside of work that may distract them from work and may again make them, you know, a weapon  in work as well.  give them the skills that could require to make them better in the workplace,  or they're going through something personal  or, you know, whatever it may be, just everyone's their own person and just to have that kind of empathy and thought that actually some people are going through things and how can I make this a space where they can feel open, feel the need to talk to us about accommodations that anyone may need, not just people with chronic diseases. 

Lilly: Yeah, Caitlin, that is such an important point and something that again, talk about a lot in the collective and something I'm really passionate about is  really talking about it, being comfortable talking about your chronic condition. And I know that's not for everyone, right? As advocates, we do it all the time and it's probably much easier for us at this point,  but there is so much value when you talk about something like that. I'm sure that you have both seen it. Other people open up, you'll often hear, well, I actually have and autoimmune disease too. Somebody that you never knew how to use start talking. And you know what, when we talk about some of this stuff, some of these challenges that we face in our life, that creates deeper connections  and more vulnerable relationships. And that actually it's really beneficial  in the workplace, right? To have deeper connections with your colleagues, your employees. So  there's a lot of value in that and being able to share and have those shared experiences. And so, try to encourage folks when they're comfortable. And that is part of there being a  safe environment to be able to do that in the workplace. But  I think it does, it really can drive meaningful outcomes. 

Caitlin: Yeah, amazing. 

Clarinda: Thanks, Lily. That was special. And overall, this has been a really, really meaningful conversation. And it's hit home in many ways. Just for the last bit, I think that, this is a question that we ask all of our guests  and it's just for your advice.  So first, your advice for people living with chronic illness who would like to thrive in their careers while prioritizing their health. 

Lilly: Yeah. So  a couple of things. My first one, of course, is going to be to figure out your secret sauce because that's going to empower you. It's going to allow you to own your narrative, give you an instant confidence boost and frame this. Should you decide you want to disclose your chronic condition in the workplace? I would say doing your homework to seek out career opportunities with companies that have made commitments to the disability community. Fr example, looking at Disability IN's website and seeing all of their corporate partners. And then my last piece of advice for people who this maybe suits them is entrepreneurship. It's considering it and it's not for everyone. And it certainly comes with its own set of challenges, but it does offer  this level of ultimate freedom and flexibility that is often what we as people living with chronic conditions need. So I would say those are my big three pieces of advice. 

Clarinda: Thanks. And would you add anything  more specifically for patient advocates on that front? 

Lilly: For patient advocates,  it... would be to set boundaries and take care of yourself.  So  if you are someone who is a patient advocate working professionally in this space, you need to prioritize your health. Don't forget that sometimes patient advocates, I'm sure you guys have said this at some point and talk about it, sometimes we're the worst patients.  And so you need to take care of yourself. You need to set boundaries. And it's okay to say no. You have to say yes to everything.

Caitlin: Yeah, that's really great advice because if you don't prioritize yourself, then you can't help other people. It's the same thing. You can't fill from an empty cup. Absolutely. And then just the last bit then, do you have any advice for employers to be more sensitive and inclusive to people living with chronic diseases? 

Lilly: So I would say that we all have these implicit biases, right? And doing the work to begin shifting your mindset against that. that somebody may be living with a chronic condition is less capable, trying to start to undo that is step one. And then I would say creating an environment where it is safe to disclose and have open and honest conversation and offering your employees resources that can help them and help them feel encouraged and know  that this is something you're committed to.  Having access to memberships like the Chronic Boss Collective or Michelle Irving's programs, Career and Chronic Illness,  Keely Cat-Well's Making Space. There's so many opportunities out there for employers to tap into. And so I think  even just doing one of those things is a really positive step in the right direction. 

Caitlin: Excellent. Thank you so much. I think that's a really great summary and way to end this. it's been a really empowering conversation. Thank you so much, for joining us today. 

Clarinda: Thank you, Lily. This was wonderful. 

Lilly: Thank you for having me and for the really important work that you are both doing to elevate  these types of conversations. It was a joy to be here.

People on this episode

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Caitlin Rich

Co-host
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Clarinda Cerejo

Co-host