Shining a Light on Hidden Disabilities in the Workplace with Harper Spero (Ep. #65)

Wendy Hanson  0:24  

Welcome everybody. You know at BetterManager we believe everybody deserves to thrive at work. Recently, I did a podcast with Tara Mae CEO of spirit tech. A spirit Tech has a model for supporting neurodiverse individuals. Most employees are folks with autism are on the spectrum. We know that an inclusive environment that supports people with disabilities leads to all kinds of benefits for everyone in the organization, and also bottom line benefits and productivity. It fosters a culture of openness and creates an environment where all employees can succeed. More than ever, we provide environments where everybody thrives. I'm so excited about today's guest, Harper Spiro, who is going to help us understand the impact of hidden disabilities in the workplace, and how we can be supportive and provide an inclusive environment there. So let me tell you a little bit about Harper. Harper had eight jobs and 10 years before starting her business in 2014. She worked in marketing public relations and event production for a private jet company, several beauty brands, a SaaS company, a music management firm and a beauty focused PR firm, where she got her first gray hair on her first day on the job, tweeting about lipstick became meaningless when a life altering surgery, a result of an extremely rare immune deficiency, hyper IGE syndrome became her reality. Since 2014, Harper has been a business coach for service based solopreneurs and small business owners. She works with clients individually and in groups. In 2018, after years of not finding content related to her rare condition that resonated with her Harper launched made visible a podcast that amplified stories of people living with or affected by invisible illness. Harper is originally from New York City currently lives in Tel Aviv and is constantly defining her read her definition of home. Welcome, Harper. Nice to have you.

Harper Spero  2:32  

Thanks so much, Wendy. Nice work in pronouncing hyper IGE. It's often a stumbling block for people like what is this thing?

Wendy Hanson  2:40  

Yes. Well, that's what we're going to learn today, we're gonna learn what is this thing? So that's good. So let's start at the beginning, what led you to want to become an entrepreneur, you did a lot of other things before that, what a rich history. But what what got you started there.

Harper Spero  2:55  

I feel like straight out of college, I always knew I wanted to work for myself. I have a lot of entrepreneurs in my family. And I honestly didn't realize that until a few years ago, because some of them are real estate, brokers and insurance brokers. So they work for these large companies, but essentially, they work independently. And I think I was just always motivated to do my own thing. I had a lot of ideas, I had a lot of motivation, very driven person. And I often felt working in some companies, whether as an intern or lower lower level jobs, like I could, I could do some of these things better. And I would like to do it my way. And I think through my own health journey, I realized the value of being an entrepreneur and having the flexibility and freedom to create the schedule that worked best for me. And what's interesting is I didn't really know what business I wanted to start as a 20. Something I just knew I love the concept of having the ability to do it on my own.

Wendy Hanson  3:55  

And then you had a surgery in 2012. And that changed everything. Tell us a little bit about that. And then you can also explain what this hyper IGE syndrome is.

Harper Spero  4:08  

Absolutely. So I was running the digital department of a beauty PR firm, very high stress, crazy hours, working around the clock and on the weekends building a new department there. And I had this challenge of walking down the street and feeling like after two blocks of walking in New York City. I'm a native New Yorker and could walk endlessly. You know, 10,000 steps was not even a question on a given day. And I'd walk two blocks and feel like I was going to collapse. And suddenly I'm realizing something's not right here. I can't breathe as normally as I had before. And eventually after several months of this being an ongoing issue, and as my general my primary care doctor not knowing what to do, I ended up seeing a doctor who found a cyst the size of a golf ball in my right lung and It came out of what felt like nowhere. And I ended up having this major surgery in March 2012, to remove a quarter of my right lung. And you know, as you said, the backstory to this is I was diagnosed with this rare immune deficiency, hyper IGE syndrome, when I was 10 years old, even though I presented signs, starting at birth, but no one knew what to do with me. So this was the first time in my life after 27 years of navigating this, that I finally realized, okay, I need to take control of my health, I need to start talking about my health. And I need to raise awareness around what I'm going through, because I'm probably not the only person that has this condition, let alone other primary immune deficiencies and rare diseases. So I started advocating for myself and putting myself out there, related to my health. Thankfully, the surgery was very successful, but I still deal with ongoing lung issues. And that's been my biggest challenge related to my health in recent years.

Wendy Hanson  6:01  

And as you talk about, it's an invisible illness. And, you know, that's a really hard thing, because you're going through something that other people don't know, how did that first show up the invisible when you were when you were going into workplaces,

Harper Spero  6:16  

related to the workplace was really challenging. When I think about that time of going on medical leave for several months for surgery and the recovery after surgery, it was really hard to talk to my boss the pattern and feel like she provided me with any level of compassion, let alone other co workers, no one could see what was going on inside my body. No one knew what it felt like to be in my body and understand the intricacies of living with a rare deficiency. So I had to advocate for myself, but I don't feel that I really had the language and the know how to do that, because I'd really never done it before. I had hidden and, and lived with so much shame for so many years around having this rare disease, that I really put band aids on everything physically and emotionally for so long, that I didn't really know how to communicate with people and say, Hey, I need a day off from work to go to a doctor's appointment, I sort of made made it up, I figured out along the way. And this one experience in working for someone it was my second to last job before starting my business. Definitely it was a reminder that my boss wanted to build a new department. Her intention was to grow the business, make more money, make more happy clients. And unfortunately, at that time, that was not my goal. My goal was making sure that I was okay. And our goals were not aligned at that moment. So when I think back, I have an understanding that she didn't really know what to do, but she knew what her goal was. And I knew what mine were. And the relationship did not last very long. I came back to work after a few months and worked part time. And it was very clear that it wasn't the place for me. And I think you know, the lesson to be learned there is to try to find the language to be able to communicate your needs. I said I needed to work part time, but no one really knew how to respect those boundaries. And so I didn't respect them myself either. I was working these crazy hours even though I was technically part time. So if you create those boundaries, people will respect them. I also think that there's more education to be had around invisible illness in the workplace, because so many people haven't been through this personally or friends or family members, or past employees. And so I think there's a need for more education on what it's like to live with an invisible illness and navigate the intricacies of, of needing time off doctor's appointments, whatever flare ups you may be living with. And I think if you haven't been through it, you don't really understand

Wendy Hanson  8:57  

when you were describing it hard for you use the word shame. I think that's important to talk about because people may not really even get that like why would you have shame you know, you have an illness so that I think that's a good thing for everybody to understand.

Harper Spero  9:14  

Yeah, I think when I when I when I think about shame the the word comes up for me mostly in my preteens teenage and college years, a time when you want to fit in so badly. You don't want to stand out. It's even like my name. As a kid. I hated the name Harper because I wanted to be Kelly or Lindsey like many of my other friends something more generic and common. And so for me, I wanted to belong and I didn't feel like I belonged. Because behind the scenes I was navigating doctor's appointments and random health issues. So I think one of the best thing that I have found in recent years is that by sharing my story and helping other people share their story through my podcast, through writing classes that I facilitate, as well as working with companies, I'm helping other people share their stories and realize they're not alone. And one of the most fascinating things that I've experienced over the last few years is how many people live with different types of conditions. You can have multiple sclerosis, depression, bipolar disorder, cancer, and a rare immune deficiency all in one room. And while the diagnosis is completely different, what people have dealt with navigating workplaces, family, friends, medical experiences, insurance, the emotional side of things everyone can relate to. And there's such a commonality. And all of a sudden, that level of shame that you may have walked in with when you first got into the door starts to dissipate, because you realize that you're not alone in this.

Wendy Hanson  10:51  

So that's a good point. Yeah. If with the things that we don't know, if we walk into a room of people, yeah, there's a lot of stories. You never know everybody's story, right? Yeah, that's something that

Harper Spero  11:01  

I think about all the time. I mean, I always use the example, when when I was younger, I lived actually around the time that I had my surgery, I lived in a third floor walk up, and I would take those stairs and feel good about it. There was actually an elevator, but I really didn't like it. And I used to judge people that would take the elevator from the second floor to the, you know, main level going, Why are these people wasting my time right now I have somewhere to be. And I quickly realized that I didn't know what was going on with those people, why they were taking the elevator was not something that I would ever understand. And then I became that person after surgery that I had to take the elevator that one flight, and I realized that you may not be able to see what people are going through and to try to have some more compassion for people like that. Or everybody, not every not people like that. Everybody, everybody,

Wendy Hanson  11:54  

we all need compassion, because we don't know the story. Yes. So what do you wish more employers would take into consideration when it comes to employees health and well being and you know, the issue of invisible illnesses.

Harper Spero  12:10  

I think that because it's invisible, there needs to be some level of behind the scenes accommodations that are happening, that then become presented to new employees or existing employees, I think about how much COVID has made an impact on the lives of people living with invisible illnesses to feel more supported. And seen. Just yesterday, I saw an example example, I actually made a note of this to talk about someone sent over a Calendly link for me. And we're about to have a Zoom meeting. And in the Calendly link where you could sign up in order to schedule the call, it said, please let me know if there's any way I can create a more inclusive and accessible meeting experience for you below. And I think something like that is so simple. If you're working remotely or, or mostly remote, to be able to accommodate people on Zoom, whether it's turning on the transcription, so people can see the text, if there's audio challenges that they have. There are some people that don't want to turn on their video because they're in bed and working from bed, but they're still being productive. So I think it's employers having a bit more compassion and understanding where people are coming from. And I think that's an employer's responsibility to have the education and knowledge of what can be done to accommodate people. If it's in office, Is it certain type of chairs that could be helpful for people? Is the lighting a problem? Are there sound distractions? I mean, it really depends on what people's conditions are. And I think creating a supportive and inclusive environment can help people feel like, okay, I can go to my employer and say, here's what I live with, here are the accommodations I need, because I feel supported by you, as an employer to work at this company. Because I think there's a lot of people that are walking around going, I don't feel supported. And I'm suffering through this, but I'm too scared, or I'm too shameful to come forth and say, here's what I need. Please accommodate me, because they don't want to be the difficult employee.

Wendy Hanson  14:21  

Yeah. And what I'm hearing too, is the issue of privacy is a challenge. Like if you told people at HR, you know, they really holding things confidential. So it's not something you go announce. So how do you get around that piece of privacy?

Harper Spero  14:38  

I think that's where it's on the employer to be clear that they have certain policies and certain beliefs, and they're doing the work to make it a more inclusive environment, so that people can come in and feel like okay, I'm going to share this information because I feel that I'm being supported here. I know that I will be taken seriously And people will understand that I have something hidden that they can't see, but that it's real. And I think there's a level of advocacy that's really important for people to do. And I think it can be challenging for employees, I think, you know, one of the interesting things that I've explored over the years is how many people find it so hard to navigate their own health on a day to day basis on a year to year basis, but they often also have to manage the relationship of the people around them, whether that's in the workplace, friends, family members, but feeling like they need to keep them updated. They need to manage their emotional well being, they need to manage their reactions. And I think that's no different in the workplace. So I think it's a challenge. But at the same time, I think the COVID 19 pandemic has helped people who are immunocompromised because the word immunocompromised is being thrown around a lot more than it had been. And people are starting to understand the accommodations that are needed. And people with long haul COVID are no different than people who are living with hidden diseases.

Wendy Hanson  16:05  

Yeah. I agree. And I think I learned this also, from talking to Tara Mae, from a spirit tech about folks on the spectrum, the kinds of supports that people get our supports that everybody should get, you know, it's not, then we don't have to worry about pinpointing people, you know, what do you need? And you brought this up very well, what do you need that will be able to make you more productive at work? You know, is it a different chair, you know, ergonomically, you know, for everybody? Is it what, what is it? What are the hours, maybe I'm, you know, mom at home, and I need to have certain hours. And if everybody gets a chance to figure out how they are going to thrive at work, then we're much better off, then we're not singling out people that, you know, we're trying to figure out a disability because we're taking care of everybody. Yeah, I

Harper Spero  16:54  

agree with that so much. And I think that just shows the importance of D AI in general, like everyone fits in some level of a category of wanting to belong and feel included. And I think about, you know, certain workplaces that I was at, where the chairs were so uncomfortable. And my health issue has nothing to do with, you know, physical, like a chair needing to be comfortable, but it was uncomfortable. So, you know, what can you do to make everyone feel supported and included, and what accommodations can be made, because to your point, there are certainly people that are more productive in the morning hours or the evening hours, as you and I discussed before we started recording. And I think that that's something that you know, if you're going to be a productive employee, and you have proven to your employer, that you are worthy of hiring and a valued employee, when you work and the hours you work, as long as it's accommodating with clients, and whatever the business is, what difference does that make as long as the job gets done?

Wendy Hanson  17:57  

And a lot of companies still struggle with that, as we know, you know, especially I think they went through the curve when we first started, and everybody went remote was like, How will I know that they're working? You know, and in my experience, talking to many, many people, and all the folks that we've coached at BetterManager, people are working more and too much so that the opposite the pendulum has swung. So we have to be careful of that. Also,

Harper Spero  18:23  

there's way less boundaries, because it's not like, Okay, I'm going to leave the office now. And I have a commute, and I'm going to listen to the podcast and pick up kids and have dinner and all of that. All of a sudden, it's all blended in into the same space, and where you eat and sleep and work is all in the same room.

Wendy Hanson  18:42  

Right? Yeah. Cool. So share with our listeners a little bit of the concept behind made visible, you know, because you really started this to try to help others because you couldn't find the help yourself.

Harper Spero  18:55  

So I had the surgery back in 2012 started sharing my story and telling people about living with a rare immune deficiency, and started writing about it and being featured on podcasts and speaking about it more. And then in 2018, I was looking online for more content that I felt like I could resonate with given living with a invisible illness and I couldn't find anything. Everything that I read and saw was about people who their unfortunate situation was being stuck at home, unable to work, or go to school. That was their reality, given their health issues. And for me, I had this rich life of running a business and traveling and going out and spending time with friends and seeing like music and doing the things I love. And I wasn't seeing any content that spoke to me like that. So I decided to start a podcast and start interviewing people who are living with or affected by an invisible illness and when I say affected by, it's not only patients and the people who are living with it, but also family members die Doctors, healers, therapists, people who started businesses because of family members or people they knew who are living with invisible illnesses. And I had 100 episodes in two and a half years. And the stories that came out of it was just so compelling, to better understand what people were going through and what it was like to navigate life with an invisible illness. As I said, there are so many people with so many different types of conditions, but the connection that can be made, no matter what the condition is, is so so valuable to help people feel less alone and more seen and heard.

Wendy Hanson  20:36  

That's so important in life, right not to feel that you're alone and know that there's a community you could talk to, what impact do you think COVID-19 had on the invisible illness community?

Harper Spero  20:48  

I think it was a really challenging start, I think there was, you know, in the early days, a lot of people really didn't know how much it would impact and disrupt people whose immune systems like mine, are so prone to infection. So it was so scary in those early months and really years. And I think no one really knew how to protect those living with rare immune deficiencies and hidden diseases. So for a while, I think there was a lot of confusion, what to do, what are people's boundaries, what are people's limitations, and I think over time, and the vaccine rollout started to make it clear to constantly protect the people who are immunocompromised, and I keep going back to that word as one that has gotten a little bit more I want to say like press, it's a funny way to put it. But it's it's a little bit more of a buzzword in a really positive way to help those of us feel more seen and heard and protected. And for employers and friends and family members to be a bit more compassionate and understanding of what it is like to go through this. And know that we need to take things a bit more seriously than your average person that may not have an invisible illness or health condition that makes them more susceptible to getting the the the COVID-19. Yeah.

Wendy Hanson  22:11  

And you are very active in the Immune Deficiency Foundation. And that could be a resource for some people. So could you briefly speak about that? So folks would know where to what it involves?

Harper Spero  22:23  

Yeah, absolutely. So the Immune Deficiency Foundation, otherwise known as the IDF, the goal is to improve the diagnosis, treatment and quality of life of those who live with primary immune deficiencies. And they do that through community advocacy, education and research. And I've been involved for about well, eight or so years now, I volunteered, I attended the conference, I spoke on panels at the last two conferences. And then almost a year ago, I was brought in as a board member. And we have a new executive director who is a total powerhouse and has such a vision for this organization. And they do incredible work. There's all these teen programs and programs for people to learn more about what it's like to live with a primary immune deficiency, which are often rare chronic conditions that are also genetic. There's only 300 people in the world living with the condition that I have. So they are the go to resource for me, other than my doctors to learn about where things are at with medications and how to navigate life. Just last week, my doctor did a webinar for the IDF to educate more people on hyper IGE syndrome. So you know, one of the biggest things that we're trying to do more and more is to reach those that that are undiagnosed and misdiagnosed, because there's so many people out there that are going Doctor, Doctor, with people just saying, we don't know what to do with you, we have no idea what to test you for. And the IDF is an incredible resource to be able to get some sense of what kind of doctors to go to what kind of tests to be doing. Who can you talk to that could be a valuable resource in order to get more information about what you may have.

Wendy Hanson  24:12  

That's great for people to know. Wonderful. Yes. So what are the few things a little kind of summary? What can employees with invisible illnesses do to advocate for themselves in the workplace? That's what we want to leave people with? What are some of those? Absolutely.

Harper Spero  24:29  

So I think when you're you're looking for a job, I think asking questions to get a better sense, from HR from a recruiter from a potential employer. How do they create a more inclusive workplace and make them feel like they're going to be supported no matter what their background is that there are certain accommodations made for anyone and I think you brought up a really great point about that, that it's not just people who are living with invisible illnesses and disabilities. It's really everyone because you have no idea what people are going through. And I think it's also about communicating with your managers as well as your colleagues about what your needs are. I've talked to people who needed to give people a heads up that they're constantly surrounded by, hey, if I go into, you know, all of a sudden I pass out, or if something happens to me, here's who you need to call, here's what you need to do, there may be this bag of medication that is in my desk drawer, make sure you give that to me, here are the accommodations that would be really helpful for you to know in advance to be able to take care of me. And as I said, I think it can be challenging and scary, to put yourself forward and say, This is what I'm going through. But at the same time, it could be life or death. And my understanding for many people that I've talked to is the more they advocate for themselves, the more they put themselves out there and share their story to help other people understand, the more compassionate people are, and more people can meet them where they are.

Wendy Hanson  25:59  

Yeah, that's such a, those are such great examples. And somebody needs to know, if you've got some kind of invisible illness, you know, even you know, anything, if you have a seizure, somebody needs to know, how do they help you? Yeah. And I and you know, that brings up the shame piece again, because I've, you know, talked to some friends and colleagues about that, and we need to be able to help support each other no matter what. So yeah, I

Harper Spero  26:23  

mean, I think back to I think back to my story, and spending 27 years of my life, as this very vibrant, outspoken, outgoing person, my parents always remind me that I was such an edit such a big personality as a kid and obviously, still do. And yet underneath I had all this shame and discomfort and how much that didn't serve me. So my goal is to help more people become more confident in what they're living with, because we're all going through something.

Wendy Hanson  26:52  

Yes, well, yeah, we are. So if people want to learn more about what you're doing and get in touch with you, Harper, what's the best way for them to do that?

Harper Spero  27:02  

So everything is on Harper spiro.com. And the podcast, my writing classes, the consulting work that I'm doing with companies can also be found at made visible stories.com. And I'm on Instagram and Twitter at Harper underscore Spiro.

Wendy Hanson  27:18  

Okay, great. Well, we'll have that in the show notes, everybody. And thank you so much, Harper, for sharing this. I think a lot of people that are listening, it's going to open, it's going to open up their eyes if they don't have this awareness of invisible illness, and those who do will not feel as much alone. And that's how we're going to get people to really be happy at work and take care of themselves in their life. And that's what's most important.

Harper Spero  27:43  

I agree. Thank you so much for sharing the story, Wendy, I appreciate you.

Wendy Hanson  27:47  

Yes, thank you, Harper. So if anybody has any additional questions or ideas and wants to reach out, you can you can email me at wendy@bettermanager.us or find me on LinkedIn and send me a message. We're so happy that you joined us today, because managers and leaders around the world need the information to make the workplace a safe, productive, and happy place. And I'm going to stick to where you want to thrive at work. And that really is, it may be our tagline of BetterManager but it's something we want everybody to live. So thank you all for joining us today.