FYB COI 11 | Making Invisible Illnesses Visible

 

It’s so easy for us to assume that everyone’s able-bodied. Unfortunately, many of us are not. There are tons of people who are walking down the street all over the world living with health issues – mental and physical – that we have no idea they’re dealing with. It could be anything from depression and bipolar disorder to multiple sclerosis, cystic fibrosis, PoTS disease, and all these things that many people haven’t even heard of. People hide this because of the shame around it. Harper Spero had the same experience when she was diagnosed with a super rare autoimmune deficiency called hyper-IgE Job syndrome. She tells us about her the story of how she finally decided to come out with it and how she is now bringing invisible illnesses to light and creating a platform for others to share their stories with her podcast, Made Visible.

Listen to the podcast here:

Center Of Influence: Made Visible Podcast with Harper Spero

I am excited to have another podcaster who’s been very successful. Harper Spero is a business coach and consultant who specializes in working with individuals who want to live, work and earn on their own terms. She thrives on helping people navigate every stage of the entrepreneurial leap, whether it’s planning to launch, to growth, working with clients to decide when you should leave your day job and go all-in on your idea. We’re going to talk a little bit about business, but her podcast is so interesting. It’s called Made Visible that helps people with invisible illnesses feel more seen and heard. That’s what podcasting is all about. Here we are talking about something even deeper than that, the hidden illnesses we all live with. The interview-format podcast also explores what it’s like to be a caregiver to someone with an invisible illness.

Someone who has lived with a rare invisible illness for her entire life, Harper is passionate about bringing invisible illness to light and creating a platform for others to share their stories. She has some great stories on there. People who I didn’t even know had these illnesses, they barely mentioned them. Prior to coaching and podcasting, she spent many years leveraging brands through marketing, public relations and event production. Her clients include heavyweights, Johnson & Johnson, Disney, Ann Taylor, nonprofits like the David Lynch Foundation, Lower Eastside Girls Club, Headstrong Project, and Bent on Learning. She earned her coaching certification from the Institute for Professional Excellence in Coaching. Since launching her business in November 2014, Harper has helped clients discover their path to professional success while supporting them and integrating fulfilling lifestyle changes and maybe some health style ones too. She’s based out in New York. I’m so excited to have you here, Harper. Thanks for joining me.

Thank you for having me. I’m so excited for this.

You’ve got this hidden illness, what made you decide that a podcast was going to be the right way to bring that out?

I went through a bit of a health crisis a few years ago and had not shared what was going on with my health with my friends, family members or anyone. I started reading content online and feeling like I didn’t resonate with so much of it. I’d read about invisible illnesses and chronic illness and go, “A lot of these people are bedridden.” They don’t live “normal lives.” They can’t get out of bed, they can’t keep jobs and they don’t have friends. Walking down the street, you wouldn’t have any idea that I was living with something. When I was reading this content and doing my own research on podcasts, I’m going, “This doesn’t exist.” I want to be able to listen to something and hear about people who are thriving while also managing invisible illnesses. I’ve been a huge fan of podcasts for as long as I can remember. I don’t even know how long they’ve been around, but I feel like I’ve been listening to them for a while and it was the medium that I enjoy the most. I’m a big writer. I’m a tough reader. It’s hard for me to sit and focus and read, but I can listen to ten to twenty hours of podcasts in the week and said, “If this works for me, I’m sure I’m not alone here.”

FYB COI 11 | Making Invisible Illnesses Visible

 

I always say that’s the thing. If you’ve got something where people are searching at 2:00 in the morning when they’re in pain, when their family’s not around, they’ve got no support system, they don’t have anyone to talk to and they’re searching for something, that’s the perfect topic to have a podcast about, because what do you want to do? You just want to cocoon up and listen to something and reading that late at night is not such a good idea.

I think about the times where I wake up and I’m like, “I’m up. What should I do with myself? Do I want to read? No, I want to turn on a podcast.” It also potentially put me to sleep in a positive way.

You pick the perfect media. Tell us about what are these invisible illnesses that many people are dealing with and why don’t they talk about them?

I was diagnosed with a super rare autoimmune deficiency called hyper-IgE Job syndrome. There are less than 300 of us diagnosed in the world. It took my first ten years of life for my mom to figure out what was going on with me. I’m having lots of different issues, mostly related to skin and lungs and not knowing what the deal was. When I was given the diagnosis I was also told, “We don’t know what to do with this because there are so few of you in the world. Here’s a medication, best of luck to you.”

I feel for your mom as a mom myself. That’s the worst answer you could ever receive. It’s like “You’re on your own. Good luck with that.”

I featured her on my podcast for my birthday and got to hear her story as the caregiver all my life and what it was like for her, which was fascinating. To your question, there are tons of people who are walking down the street all over the world living with health issues, mental and physical, that you would have no idea they’re dealing with what they are. It could be anything from depression and bipolar disorder to multiple sclerosis, cystic fibrosis, POTS disease, all these things that many people haven’t even heard of. There are the more obvious ones like cancer that walking down the street unless someone is bald or has lost a ton of weight from chemo and radiation, you wouldn’t know what they’re dealing with.

There was a time in my life where I was the jaded New Yorker who would be in an elevator on the fifth floor, go downstairs and when we got to the second floor, someone would go on. I go, “What is this person’s deal? It’s so rude. It’s one flight. Why aren’t they taking the stairs?” I became that person with my health and I couldn’t get down that one flight of stairs. I didn’t have a cane or a cast or anything visible to see what it is that I was dealing with. It was all internal. It’s so easy for us to assume that everyone’s able-bodied. Unfortunately, many of us are not. A lot of people hide this because there’s a lot of shame around it. I spent the first 27 years of my life not talking about my health in any way to anybody. My best friends of fifteen, twenty years didn’t know anything I was dealing with. “She gets colds a little bit more often than other people or has the flu or allergies, but nothing more serious.” No one understood because I never shared anything about it.

How did it feel to “come out” on the podcast to your friends and family?

I started to come out a few years ago when I had a major surgery and it was impossible to hide it. I was on medical leave for two months and I had to say to my friends like, “I’m having this major surgery and there’s this underlying issue I have.” They were all surprised and commended me for how I handled it and why did I hide from them. Everyone was always so supportive of it. I wrote a lot of articles for Mindbodygreen and Huffington Post and a bunch of other platforms, but the podcast is definitely been the centerpiece to sharing my story and having conversations with other people. I try to infuse bits of me and my situation while having these conversations without making the focus be on me because I did not start this for me.

It does help you make that personal connection and rapport with your guest, which helps draw them out and make them feel comfortable.

FYB COI 11 | Making Invisible Illnesses Visible

 

I had a conversation with someone where our conditions are so different and that’s what’s been fascinating is having very different stories, different backgrounds, different health and yet everything is so relatable.

I loved the episode you did with Genevieve Gorder, which is one of your most popular. First off, I always liked her. I worked on a project. I knew her very well from that. You sounded like friends and that’s the best ideal situation because you build a rapport before you even got on the show with her.

She was someone that when I first started, I was like, “I need her to be on the show. She had been posting a little bit on Instagram stories about having Hashimoto’s and Lyme disease, but she’d never come out about it. I got connected to her. She came on the show and we’ve since become friends. She’s supportive of the podcast and been wonderful through it all. She recognized the importance of sharing her story, which could raise awareness for many other people and for fans of hers to realize she has Lyme and they may have Lyme too, and they feel like they can get through it knowing that she has.

That’s the thing that happens so often. We see it even at a lower level. We see women with hormone disorders and other things, not just thyroid. They’re suffering in silence because you do want to point out how much of a woman you are when you’re dealing with big business. There are a lot of other situations in which the empowerment that you’re giving people can help. Good for you. I’m so amazed with the accomplishment you’ve done in your show too. That’s quite something. What are some of the most interesting or funny things that have happened to you?

It’s an interesting thing when you go into something not knowing exactly where it’s going to land and if anyone’s going to listen to other than your parents. It’s been one of those things. I released the 50th episode and I’m like, “What? 50 episodes.” I have all these other people lined up and I’m starting to get some bigger celebrities, which is exciting. One of the big lessons that I learned quickly was how important it was to prescreen people. I’ve had a lot of people contact me, looking to be guests on the show, total strangers, people I know, friends of friends. If I haven’t talked to them personally, I don’t know their story and I don’t know how well-spoken they are. There have been times where I’ve interviewed people and I’m like, “I can’t air this.”

There are no bad stories out there. Everyone's got their story and it's all important. Click To Tweet

Good for you to be discerning.

It’s such a tough call to make but it’s one of those things where I’m like, “I wouldn’t want to listen to this, why would I put this out for anybody?” It’s been a tough conversation with a few different people to have to do that. I’m protecting my brand and also protecting my listeners ears from listening to things that are boring.

You should be because you’re the gatekeeper for your audience and you know them best. They expect you to do that.

There are no bad stories out there. Everyone’s got their story and it’s all important, but it’s the way that people tell stories that’s so important to be able to present yourself in a certain way that’s engaging to outsiders.

That’s relevant too to your show and your topic, what they’re searching for. That’s your control factor. That’s how you decide, your litmus test. If someone else wants to start a podcast, do you think they should?

FYB COI 11 | Making Invisible Illnesses Visible

 

It depends on the person and what the topic is. I’ve had people approach me and say, “I’ve been thinking about doing this.” I start asking some questions of, “What is this about? Is this going to be a mini-series that’s twelve episodes? Do you see this as a long-term brand opportunity? What’s your goal in doing this?” It’s important to think about those things because, to be honest with you, I didn’t. I’m somebody that figures things out as I go. It’s oftentimes worked out and I get a good response to most things, not everything. This is something where it takes a lot of time and energy to produce a podcast.

There are many different ways to do it in a cheap, efficient way or you could put money into hiring an engineer and getting a studio. It’s important to think about what your goal is here. A few months ago, I started creating a nineteen-page guide called The Newbie’s Guide To Podcasting, which is a guide that I wish someone handed me before I launched because it was one of those things where I had no idea going into this, “Am I supposed to get sponsor or do I want to start monetizing this? What does that look like? How do I approach these things? What are the right terminologies that relate to podcasting?”

It’s the same thing. Many people start and they make mistakes. I did a webinar on the twelve things you did wrong when you were launching your show. That’s killing your growth and its basic stuff like you didn’t have a voice of authority for your intro, outro. I see the mistakes again and again because I have a big platform that I can take a look at that and I interview everyone who’s successful. You start to see there’s a little area of like, your topic is so interesting and there’s no one competitive in the region at all and you’re good. It doesn’t matter how good your qualities, but it’s getting rarer and that’s happening. You have to up professionalism. It’s not too late to fix those things. If you already started, you can fix them.

There are many podcasts that I listen to that I feel like things are getting competitive and there are so much repetition of guests and the same stories over and over again. I’m starting to unsubscribe to a lot of podcasts that I love a few years ago because it’s getting totally saturated. The big thing here with all podcasts, all genres is coming up with new content, which is hard to do in the age of social media and the internet, but how can you spin it in a different way and put your own take on things?

In your case, how do you become binge-listenable? Did you expect that? Did you plan it or it just happened?

It just happened. For me, because I’m so particular about what I listened to and what I put out there, I’m very cautious of what is resonating with people. When I get responses from people on Instagram through DM and through email saying, “This worked for me or I loved this, or I want more of that.” I’m taking that stuff into consideration because I don’t want to just push out content for the sake of pushing out content. A lot of people have requested certain illnesses be featured or certain wellness trends be addressed. Those are the things that I’m doing. I’ve had several competitors come out since I launched and it’s interesting to see the types of things they’re addressing and I’m not or vice versa.

I do this thing where I go for your five tips because this is a show for podcasters. We want to give them some lessons that you might have learned. What are some of the best ways to book great guests?

The big thing is thinking about who you want and at what point you reach out to them. If you get some press and some notoriety, it’s good to wait a little bit to get those things before you reach out to some of their bigger-name guests. There was someone I was excited about reaching out to and I did it two weeks in and I’m like, “Why didn’t I wait six months and say I have this number of downloads and I’ve gotten this press and I’ve had this guest?” Being a little strategic about how to get those people and when’s the right time. I don’t know that there’s necessarily a true right time, but get a little bit of credibility.

Do you have a big guest in your future you’d like?

My big person is Dax Shephard. He has rheumatoid arthritis and he’s talked about it on his show, Armchair Expert a lot. I sent him DMs from my personal account and from the podcast account. My publicist has reached out and I am sitting with cross fingers waiting. He said he sent a note to Julia Louis-Dreyfus to get her on the show. I’m like, “Maybe I need to send him a handwritten note.”

FYB COI 11 | Making Invisible Illnesses Visible

 

How do you go about increasing your listeners?

That has been definitely a challenge. A big thing is social media and trying to engage with people who are already following the podcast and getting them to share it. The press has been a big thing. Writing about the podcast and thinking about where people who are going to be interested in the podcast are spending their time. It’s very similar to my business as a business coach. Where can I be featured that my types of people are? Also, getting my podcast guests to be sharing the podcast when they’re on it, which sometimes can be challenging to get people to share their episode. I’ve created a form where people have to opt-in and say, “I will promote this when this goes live.”

We do something on our platform, we call it ego bait. We give them graphics so they have to share it. There’s no way they won’t because it’s too cool. That’s how we did it and it changed everything for us when we started doing that. We do it for all our clients. We call it ego bait inside but I tell everybody that that’s what it is. So far, none of the guests know that that’s what it’s called. You’re doing publicity on being a podcaster. I’ve had people turn me down for this. Why wouldn’t you do this? Elevating the value of your podcast helps you get better guests. It doesn’t matter what the publicity is in a way.

I’m big on being transparent about things that are going on in my life and my business. I realized even with social media, when I start sharing more things about my health, I received more engagement. I’m certainly not looking for anyone to feel bad for me and the different situations that I’m going through. I see that I become more relatable. I’m careful about the words that I use when I share things about my own health to not be like, “Woe is me. I want everyone to feel bad about me.” That’s not who I am. I have friends and family that support me, but it shows who I am as a person. I think that’s what people are looking for especially in this world of social media and highlight reels.

Producing in a professional way, how do you do that, especially on a budget?

With social media, when you start sharing more things about yourself, you receive more engagement. Click To Tweet

 

I started on my bathroom floor with three cookbooks and two yoga blocks underneath my computer. That worked for a period of time.

A bathroom is an unusual choice I can say. Most people will choose a closet.

This is New York City, we don’t have big enough closet.

You just needed an enclosed environment.

From there, I was in touch with a manager of a celebrity that I was hoping to get on the show. She said, “Where do you record?” All of a sudden I was like, “Where am I going to do this?” That day I contacted some friends looking into studios. I’ve been in a studio ever since and still have not had that guest on. It will happen, but I said to his manager, “I’ve got a studio for you guys.” That is certainly not a cheap thing, but the quality of the sound is so much better than my bathroom floor that it’s worth it to me.

FYB COI 11 | Making Invisible Illnesses Visible

 

How do you encourage engagement from your listeners?

At the beginning of the show, I always do an intro and then at the outro, I say to follow on social media and engage in social media. We did a giveaway with some of my favorite healthy lifestyle brands. I’m making sure people know that we want them to be part of the community, we’re not just speaking at them.

What’s the best ways to monetize? It sounds like you’ve got some sponsors in, what’s going on there?

I’m going to say, it was episode 24 I had my first sponsor.

That’s early. Good for you.

That was a brand that someone had put me in touch with. They loved the podcast and were interested in being involved. It’s all been through personal connections or people I knew that knew people. It’s definitely not an easy thing. I started working with an agency and it did not work out very well. The big thing for me was finding brands that I truly felt aligned with because a lot of people are happy to take any money because it’s money. I’m the kind of person that if a vitamin company comes to me and says, “We want to sponsor the podcast.” I send it to my nutritionist friend and say, “Is this clean? What do you think about this?” She’ll respond and say, “I don’t think this is for you.” I’m thrilled to have that because I don’t want money just for money. That’s my own personal thing. I’m not going to take big pharma money and that’s not my thing. It’s identifying what messaging you want to share on your podcasts and be aligned with because that audio is going to be around for a long time. It’s not going away anytime soon. For me, it was getting sponsors but ones that I felt good about and trying to figure out other ways to monetize this because it’s certainly not a cheap thing to do when you don’t do it the scrappy way.

You’re tapping into something that I’ve seen being most successful. The majority of the podcasters that are making the most money and feeling better about the ways that they’re making their money. They’re not just paying off the show. They’re the ones who are doing it with brands that they resonate with and the ones that they actually used themselves. The Life Stylist, Luke Storey is one of my favorite examples of that. He will not rep anything that he doesn’t use and it makes a difference when he talks about it on his show and when he promos it. It makes a difference in the trust factor between the brand and the audience that starts to develop over time as well.

I’ll start using a new product and that week if I’m into it, I’ll immediately reach out because if I’m into it, I want to share it with the world. I’ve always been that person, even without a podcast, that’s like, “I found this new water bottle, everyone needs to know about it. There is a new band, everyone needs to listen to it.” I want that to be the case with the podcast. It’s getting people to be responsive.

You’re not wrong. I see it also so often from the companies that are placing ads for you. There’s not a synergy. They’re just looking for numbers and that’s not working with how listeners are. Listeners are responsive when it matters, when it’s relevant to them and when they know that you care.

I’ll say as an example, my first sponsor was a brand that also had a founder with an invisible illness. To be able to promote this product and then feature her episode, there were tons of sales because people got to hear her story and learn why this product made sense for her and for other people.

FYB COI 11 | Making Invisible Illnesses Visible

 

That’s one of my favorite things that we’ve done in our podcasts before. We would have a feature about them and then we’d advertise for them in later episodes. We would never mix it too because we wanted to get to know them first before we would agree to rep them. It’s a great opportunity for them to be able to come back and listen to that person and say, “There’s a good person behind this brand.”

If there are any people out there that work for brands and have invisible illnesses, definitely reach out because that would be compelling for everybody.

That would be very valuable to Harper, people so listen up. Being a podcast host is not your day job. You have a great coaching and business acceleration programs and things that you do. Has the podcast though helped you grow your business?

By sharing my podcast, I’m getting more visibility as Made Visible Podcast. The types of clients I’m attracting are people that may have health conditions or more focused on health because they know what it is that I’ve been through because I’ve been so vocal about what I’ve been through. I don’t see it directly correlates.

You can be a better coach to them because you’ve walked in their shoes. They’re seeing that synergy and that connection to you ahead of time. That’s where we find most of the people who are podcasting. If it’s driving business back to their business, they keep going because at the end of the day, that’s helping them and their give back is a powerful motivator as well. Is there anything else you want to share with the audience about getting started? What advice do you have for someone new?

Being comfortable in your own skin and trusting your own gut is going to make the situation better. Click To Tweet

I’m a big gut person and trusting my intuition. It’s one of those things where identify what’s working for you and what’s not. If something doesn’t feel right, don’t go forward with it. I knew that releasing these few episodes didn’t feel right to me, so I didn’t do it. Over time you get more and more comfortable in being a podcast host. When I first started, I think about some of the questions I wrote out and I was reading these questions like I have to use these. Now, I have questions lined up and it’s like, “If I get to them, great. If not, it’s very conversational,” and I prefer it that way. I’ve gotten feedback from listeners how much better I’ve gotten. It’s you being comfortable in your own skin and trusting your own gut is only going to make the situation better.

Harper, thank you so much for coming on the show, the Made Visible Podcast. What days do you air on?

On Tuesdays.

It publishes new on Tuesdays and she reached her 50th episodes. Congratulations, Harper. It’s worth the listen. There are some great episodes in there. You’re going to find somebody who you connect to, who you were fascinated at and didn’t know their story. Listen up everyone, Made Visible Podcast with Harper Spero.

Thank you.

FYB COI 11 | Making Invisible Illnesses Visible

 

I’m Tracy Hazzard and this is the Center of Influence from Feed Your Brand. We’ll be bringing you more successful podcasters. Don’t forget that there’s an Authority Magazine article that’s coming with this episode, so you’ll be able to share that on Instagram, share that everywhere and share Harper’s podcast. Everyone, please make sure you come to the website, FeedYourBrand.co where you can get all information on how to connect with Harper Spero. Thank you for reading.

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About Harper Spero

Harper Spero is a business coach and consultant who specializes in working with individuals who want to live, work, and earn on their own terms. She thrives when helping people navigate every stage of the entrepreneurial leap, from planning to launch to growth. Whether working with clients to decide whether it’s time to leave their full-time job and go all-in on their idea, or strategizing with business owners who have hit some bumps during the first few years, Harper ensures that clients have the support, resources, and confidence to meet their full potential.
Harper is also the host of Made Visible, a podcast that helps people with invisible illnesses feel more seen and heard. The interview-format podcast also explores what it’s like to be a caregiver to someone with an invisible illness. As someone who has lived with a rare invisible illness for her entire life, Harper is passionate about bringing invisible illness into the light and creating a platform for others to share their stories.
Prior to coaching and podcasting, Harper spent ten years leveraging brands through marketing, public relations, and event production. Her past clients include corporate heavyweights Johnson & Johnson, Disney, and Ann Taylor, as well as leading nonprofits like the David Lynch Foundation, Lower Eastside Girls Club, Team Rubicon, Headstrong Project, and Bent on Learning. After realizing that she craved the autonomy and freedom that came with entrepreneurship, Harper earned her coaching certification from the Institute for Professional Excellence in Coaching (iPEC). Since launching her business in November 2014, Harper has helped clients discover their paths to professional success while also supporting them in integrating fulfilling lifestyle changes.
Harper is based in New York City and spends her winters in Tel Aviv. She loves traveling to different cities around the world to connect with friends, see live music, and visit incredible restaurants, all while running a small business that allows her to find balance in her lifestyle.

 

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