Spotlight Story Program: Meet Meghan Smith

April is National Donate Life in America, and it’s a critical time to raise awareness on not only to become an organ donor, but also to learn the stories of those that have received this lifesaving transplants. One of those receipts is Maryland native Meghan Smith, a marketing executive that has used Instagram for our favorite thing…raising awareness, changing misconceptions, and showing how awesome and fun life can be with any health struggles. After a few years of health issues, it was discovered Meghan had liver disease and was in need of a transplant. Luckily, her uncle was a match to donate a portion of his liver! Meghan is such a transparent advocate because she shares the realness of post-transplant life, and all the medications and adjustments you make in life to adapt and excel. There’s no singular way to look or live as a young person with health struggle, and Meghan–who’s now a Donate Life Ambassador–is using her growing platform to give a fresh look on how incredible , fun and fulfilling life can be!

My name is Meghan and I am a 29 year old from Baltimore, MD. I work as a marketing executive for a global affiliate marketing company, and in my spare time enjoy traveling, reading, shopping, playing with my dog and spending time with friends and family. Growing up, I had a fairly normal and typical childhood. I lived in the suburbs outside of Baltimore with my mom, dad and younger brother, was active in dance and softball, and was generally healthy.

When I was 19 years old, I was studying at the University of Maryland when I started to develop abdominal pain and severe itchiness. I spent most of my college years going to different doctors trying to figure out the cause. Finally, at 22 I met a doctor at Johns Hopkins who determined the issue was caused by my liver. Around this time, my younger brother was 19 and started developing similar symptoms. For whatever reason, his liver disease had progressed much faster and he was in liver failure with liver cancer. He was listed for liver transplant and thanks to the generosity of one of my dad’s previous co-workers, received a living donor liver transplant at the age of 21.

I continued to be monitored by my hepatology team, and while numerous genetic tests were done to try to figure out the cause of our liver disease, there was never a match. In August of 2019 it was determined that it was time for me to be listed for liver transplant. Numerous people kindly reached out about being tested to be my donor. My uncle was the first person to undergo testing, and surprisingly he was a perfect match! It is very rare for the first person to be tested to be a match.

On December 10 2019, I received the amazing gift of a second chance at life thanks to my uncle donating a part of his liver to me.

Overall surgery and recovery went very well for the both of us. I spent two weeks in the hospital and was able to go home on December 24th, just in time for Christmas.

Unfortunately, two days later I developed an infection and had to be re-admitted to the hospital. Because my brother had gone through transplant before me, I was aware that transplant recovery is a process full of ups and downs along the way.

Once I was released from the hospital, I continued to recover and adjust to my new post-transplant life. This included taking a large number of medications multiple times a day to avoid rejection and infections, monitoring my vitals every day, and getting blood work multiple times a week.

I gradually built up to walking more often and getting out of the house more frequently. I was able to return to work at the end of February 2020 on a part-time basis, working up to full-time over the following months. I am incredibly lucky to work for a company that has been so supportive throughout my entire transplant process, and makes the health of their employees a priority.

Post-transplant I became a Donate Life Ambassador to help educate others on organ donation and encourage them to register to be an organ donor.

I’ve found that there are still many myths and misconceptions around organ donation and it is not discussed nearly enough, especially within my age group.

Almost 114,000 people in the United States are currently on the waiting list for a life-saving organ transplant, and on average 20 people die a day every day from the lack of available organs for transplant. I’m one of the lucky ones who received a transplant, and am inspired to help make the waiting list smaller and smaller until it is eventually 0.  

I’ve been using Instagram as a platform to share my transplant story and educate others on what it is like being an immunocompromised person during the COVID-19 pandemic. I think it is helpful to see that while someone may look “young and healthy” this may not always be the case, and to put a face to the people whose lives can be saved from following social-distancing measures and flattening the curve of the spread of coronavirus.

Throughout my transplant and now the COVID-19 pandemic, I’m often asked how I remain so positive given the circumstances.

My answer is pretty simple – I do what I can to protect myself and keep myself safe, but don’t worry over the things that are out of my control. I would offer the same advice to anyone who is feeling anxious during this time of unprecedented illness and uncertainty; do the things that have been recommended – wash your hands, stay inside as much as possible, practice social-distancing – but don’t let the thought of contracting the coronavirus consume you.

Take comfort in knowing you are doing everything you can to protect yourself and others, and use this time to practice self-care, pick up a new hobby, or do something you enjoy.

 

Spotlight Story Program: Meet Abbie Stapleton

In honor of Endometriosis Awareness Month, we are honored to have one of our GBL Ambassadors from England, Abbie Stapleton, sharing her health journey and some major life tips that will be fueling you to bring kindness into your life. Founder of the blog and Instagram platform, Cheerfully Live, Abbie has fused her personal experience going through the long diagnosis process with her joyful content that’s uniquely styled to provide relatable advice with empowering young adults in this chronic illness community. You will not only learn a lot about Abbie’s diagnosis journey with Endometriosis as a teen dealing with medical professionals not taking her symptoms seriously, but you will also learn how Abbie has preserved and uses her experiences to motivate in this empowered community of wonderful women around the world!  Now living with other diagnoses like Fibromyalgia and Costochondritis and Interstitial Cystitis, Abbie’s wide range of life experience lets her connect with many, and her platform truly is unique and joyful all her own.

Hi I’m Abbie, the founder of the Cheerfully Live blog and Instagram.

When I was 14, I experienced my first episode of excruciating pain, little did I know that I would have debilitating pain for the rest of my life. Every month, my periods would come and I would be bed-bound, unable to walk, fainting, with nothing working to ease my pain. I was back and forth seeing healthcare professionals month after month.

Every time I was told nothing was wrong.

My tests would come back clear and I was always dismissed as being the “unlucky one”, told I had a “low pain threshold” and that it was “part of being a woman”. I was even once asked by a doctor “are you sure you are not over-exaggerating?”. It wasn’t until my pain became chronic in December 2018, that Endometriosis started being investigated. I was sent from urology at first as they thought I was having urine and kidney infections that just wouldn’t clear, but then they realised my pain was more likely related to Endometriosis.

But when I saw a gynecologist, I was told that I could “never have severe Endometriosis because I was too young”. I pushed for an MRI to rule that out and to her surprise, my scans showed severe, deep-infiltrating Endometriosis. The relief I received after I got my results was huge! After years of gaslighting from healthcare professionals and feeling like the pain was all in my head, I realised my pain was real!

I was immediately referred to an Endometriosis specialist who tried me on the mini pill for 6 months, but unfortunately my pain only got worse. I finally had Endometriosis excision surgery with an Endometriosis specialist in December 2020, a year after being put on the waiting list. They found Endometriosis all over my uterus, left ovary, my bowel, bladder and both my kidney ureters.

During all of this I was also diagnosed with Fibromyalgia and Costochondritis and during my Endometriosis surgery I had a cystoscopy which revealed my bladder was chronically inflamed and that I had Interstitial Cystitis (also known as Bladder Pain Syndrome). Thankfully I’m now on the road to recovery and feeling some relief from my excision surgery, however I’m also now undergoing investigations for possible Fowler’s Syndrome and PoTS (Postural Orthostatic Tachycardia Syndrome).

When I was being investigated for Endometriosis, I needed a place where I could speak to others who were also going through the same thing, it was an incredibly challenging time, not only on my physical health but also my mental health. So that’s when I set up my blog and Instagram Cheerfully Live. I used my platform to document my journey, chat to others who were going through the same as me and share any advice which had helped me whilst going through the diagnosis process.

I’m so thankful for this community and my little platform – I’ve not only been able to support so many women in getting an Endometriosis diagnosis, I’ve encouraged them throughout their journey and shared helpful advice. I’ve also found comfort through everyone’s kind words and knowledge.

I’ve learnt so much about many different chronic illnesses and how best to support others, which has been invaluable!

There’s been so many amazing opportunities since starting Cheerfully Live such as becoming a GBL for InvisiYouth, speaking on the radio to share my story and collaborating with many amazing brands, charities and companies on raising further awareness for chronic illness!

And lastly, living with Endometriosis or any chronic illness is hard and so I wanted to share with you a few top tips that I’ve learnt along the way that have helped me cope living with my illnesses, both when advocating for yourself in medical settings and just in general life:

  1. The biggest piece of advice I could give is to get yourself invested into the chronic illness community! There is such a wonderful presence online of people sharing the realities of living with chronic illnesses on Instagram, but Facebook is also amazing for joining different groups that share lots of helpful advice. Also, Endometriosis UK offers face-to-face support groups, as well as lots of accurate information, so I’d definitely recommend their website, it’s a great resource.
  2. Research and really understand your condition, so that you are best able to advocate for yourself.
  3. Be honest and open with those you trust around you. Allow people to really see what it’s like living with your chronic illness, let people in, allow them to help and support you!
  4. If you are struggling to get healthcare professionals to listen or feel like you aren’t able to get answers – keep going and trust your instincts! If you know what you are experiencing is not normal, please keep fighting and advocating for yourself.

Being diagnosed with many different chronic illnesses has definitely made me the person I am today and in a way I’m grateful for the experiences and resilience that having a chronic illness has given me! I’m a much stronger person than I used to be 3 years ago, I am more empathetic and understanding of people’s situations. I fully understand now how debilitating fatigue and living with pain every day can be, but also now realise that you can’t always see on the surface that people are struggling.

So the main message of this piece is to remind you to be kind (especially to yourself) – you never know what someone might be struggling with under the surface. Your kindness and empathy might just change someone’s day, maybe even their life! So don’t wait to be kind, be kind today!

Founder Dominique’s Blog Presents … Podcast Master Class Miniseries

September 8th, 2020

It’s not an understatement to say 2020 has been anything but calming or as-planned. Rather it gave room for quite the opposite emotions.  A global health pandemic resulted in many being in quarantine, especially those that are immunosuppressed like myself in the chronic illness and disability communities. As we all have transitioned to being home—many working or studying from home—and we enter the last quarter of the year, lots of people have been searching for new content to bring a boost of energy into their days. Streaming TV series, finding those books we ‘haven’t had time to read’ and adding more fun activities have become part of our new daily regime. And what’s one thing that has been considerably boosted during quarantine and new hybrid work-from-home/schooling-from-home models?

Finding new podcast series to binge or jump into listening!

When the quarantine hit the InvisiYouth HQ of the NYC area, it definitely rocked our nonprofit’s team and we had to not only reevaluate a lot of our programs and plans for the years ahead, but also had to switch to all things virtual and work-from-home. When our video podcast series, InvisiYouth Chat Sessions, had to be put on hiatus (and we just started our third season, so we cannot wait to get back into film-recording!) we switched to creating an Instagram Live miniseries that ran for almost four months!

If you haven’t checked out the InvisiYouth Quarantine Coffee Break miniseries, you must do so ASAP as some of our episodes are on our IGTV.

But something we were thankful for was a project we actually started last year that is all about our love of podcasts and the incredible hosts that lead them! Seeing the wonderful impact podcast shows can have on the young adult community has made us want to highlight some of our most supportive and loved hosts, but also let them share their advice for this generation!

So many of you have asked us what it takes to start a podcast, the advice that we have gotten from our different empowered special guests on InvisiYouth Chat Sessions, and what are some of the dreams that many podcast hosts have for their future shows and community. We wanted to give you advice and tips to podcasting, some life lessons these hosts have gain from their guests, and give you an opportunity to learn more!

I am so excited to share these five incredible podcast series and their wonderful hosts!

Plus, at the end, I’m also going to give you some of the most memorable moments from the InvisiYouth team as we look back on all our episodes of InvisiYouth Chat Sessions.

Please give a listen to all these podcasts, and make sure to subscribe to them too because their shows are so much fun!

Uninvisible Podcast, hosted by Lauren Freeman

Website        Spotify       Apple Podcasts       Instagram        Twitter       Facebook

• What’s your podcast’s description/all about? 

A: Uninvisible Pod is a show about chronic and invisible illness – from the perspective of patients, caregivers, and practitioners across the spectrum of healing modalities.

• What inspired you to make this podcast? 

A: Like so many others in the Spoonie community and beyond, I got inspired…when I got sick. In 2017, I was diagnosed with Hashimoto’s disease and sleep apnea; I’ve also lived with depression and anxiety since I was a teen. I’d been working in the women’s health activism space, and it shocked me how many people in my network started coming out of the woodwork with thyroid disorders and various invisible conditions – that we’d NEVER talked about – when I went public with my news. My background is in acting and voice work – so it felt incredibly natural to give these enlightening conversations a platform, or a soapbox, if you will – by way of recording them. And I haven’t looked back!

• What is a favorite or memorable episode so far?

A: Too many – these episodes have become so personally meaningful and fostered amazing new relationships that have enriched my life in so many ways. I definitely fangirled HARD over Ilana Jacqueline (ep 43), laughed out loud with Karyn Buxman (ep 37), and learned amazing things from Sascha Alexander (eps 25, and 19) and Ariel of @carpe_that__diem (eps 40 and 41… but perhaps most meaningful to me have been the episodes when longtime friends allowed me to help them share their stories. Because of my interviews with Katie Georgiou (ep 10) and Dr. Harold Kraft (ep 7), Katie’s been offered free treatment for her MS and will be here in LA receiving it by the time this writing goes live; my friend Dayna Schaaf has been my rock, and decided to join the Spoonie club with an undiagnosed condition she talks about in ep 8; and one of my oldest friends, Clare Stafford, talked about surviving breast cancer – twice – in her 30s! – in ep 44. Also – my friend and former America’s Next Top Model contestant Mercedes Shorte (ep 1) was not only my first subject on the show…but also the first interview I recorded! Having InvisiYouth founder Dominique on the show (ep 18) was also an amazing experience. Her story is…WOW! This show is the best kind of rollercoaster!

• What’s a piece of advice you’ve gained from a guest on an episode? 

A: I always ask my guests for tips, so there are a lot of great answers to this question. But I think my favorite is: be open to trying something new – start thinking outside the box. This also means – seek second opinions, ask questions, and know that there is hope. Be curious, and be prepared not only to learn from yourself – but to be surprised.

• What’s something you’ve learned from being a podcast host?

A: Not a single one of us is alone. It doesn’t matter how complicated or weird or taboo or tough your condition is – you’re not the only one out there. Even with a super rare disease. There are others like you – you just need to look for them.

• What’s some advice you’ve gotten to pass along to new podcasters?

A: Have fun. At the end of the day, this is an investment of your time and resources – so make sure you’re finding joy in it. But also: be a responsible host. Ask the tough questions. Take the reins. Dig deep. It’s your journalistic duty in a post-truth world.

• If you could set a dream episode for your show, who would be part of it? What would it cover? 

A: JAMEELA JAMIL! She’s my Spoonie hero…but also I want to be her best friend! Not only is she blazing trails because of her outspokenness, but her relatability is exactly what makes her appealing. You don’t even have to be a Spoonie to dig what she’s about! I’d want to delve into the overlapping elements of invisibility not only in her experience as a WOC with invisible illness…but also those layers in the lives of individuals she’s met since starting @i_weigh, and how they’ve expanded her perspective. And I’d want to talk about the role of empathy in the future of healthcare, and how she sees that concept developing into…something, perhaps?…more functional for both doctors and patients.

 

Headcase Podcast, hosted by Stephanie Hoffmann

Website        Apple Podcasts        Spotify        Pippa        Instagram

•  What’s your podcast’s description/all about?

A: My podcast surrounds mental health, awareness and wellness. My goal is breaks down the boundaries of this taboo subject by diving deep into the world of mental health and all that relates to it. This show establishes real and honest mental health conversation through stories and discussions straight from the people who’ve experienced them. HeadCase’s purpose is to spread awareness and end the stigma by enlightening audiences on the lack of education, information and options for those who suffer through or are directly affected by it. HeadCase is the podcast you’ve been ANXIOUSLY waiting for.

• What inspired you to make this podcast?

A: What inspired me to make this podcast initially was a concussion I suffered that unleashed many side effects from beneath the surface. Primarily anxiety and depression and it stopped my life in my tracks and to this day is something I struggle with. I wanted a place where everyone could discuss whatever it is they’re going through without judgement, fear or hesitation.

•  Favorite/A memorable episode so far?

A: One of my most memorable episodes, although all of them are unique, would have to be the episode titles Sensitive to a Fault with Hannah Blum. It was the first time I got any real understanding of Bipolar 2 disorder and a raw explanation of of her experience in a mental institution.

• What’s a piece of advice you gained from a guest on an episode?

A: I’ve learned so much from all my guests. I think the main thing I gain is that no matter how bad things may seem or get, there truly is a light at the end, even if it doesn’t shine every day, doesn’t mean you give up on yourself or your life.

•  What’s something you’ve learned as a podcast host?

A: I’ve learned what it is to truly listen, not just hear. It’s made me a more empathetic person than I already was! And ongoing, I’m learning to speak better publicly.

• What’s some advice you’ve gotten that you’d pass along to new podcast hosts?

A: I would say, try not to talk over or interrupt your guest, pace yourself so you don’t step on your own words and be calm! Let your personality shine through that microphone— (which you should never have more or less than 4 inches from your mouth.

• If you could set a dream episode for your show, who would be on it? What would it cover?

A: I have so many dream guests I’d like to talk to. Lately, I’ve been noticing how active Justin Bieber has been in the mental health world and I’d love to hear his whole story as told from a real, raw and honest place that people may not have heard yet. Other guests I always think about having on are Jay Shetty, Russell Brand, Kevin Love and Pete Davidson. The list truly goes on but I’m thankful for all the guests I get because being candidly open is extremely brave, famous or not.

 

The Women Wave, hosted by Sterling Cates and Tricia Cleppes

Website          Apple Podcasts          Spotify          Instagram

  • What’s your podcast’s description/all about?

A: The Women Wave is a multimedia creative house that produces empowered content for women. At TWW, we encourage women to authentically connect and get involved in the world around them. In addition to an online community of women and IRL events, we have a weekly podcast that comes out every Thursday that covers everything from personal experiences, to politics, pop culture, and more. Each week, you can expect a bold, inspiring, and unfiltered conversation.

  • What inspired you to make this podcast?

A: The Women Wave came to be when we realized we weren’t the only women craving authentic conversations about our experiences. As long distance best friends in constant communication (bless you, FaceTime) about our lives and the world around us, we decided to make our private conversations public, creating space for other women to be just as vulnerable and supported. With so much going on right now, we figured we couldn’t be the only ones trying to figure it all out. We were right — and the best thing happened, now we get to do it with all of YOU!

  • What’s a favorite or memorable episode so far?

A: It’s so hard to choose a favorite because every week is so incredibly different! Over the past 106+ episodes, we’ve laughed (a lot), cried (a lot), and really explored topical stories in ways we didn’t know possible. One great thing about having this platform is we get to express our civic duty and rights, like protest and organizing. When there were families being separated at the border, we had a platform to spread awareness, research, and resources in the form of an emergency minisode.

On weeks where we may be traveling or can’t cover that week’s news, we’ll pre-record episodes where we take deep dives in to 1-2 topics or answer listener questions — which gives us a rare opportunity to dig deep, discover some gems and help our audience get to know us more. Here are a couple of our favorites. Do The Work (Episode 98) and No One Asked, We Answered (Episode 96).

  • What’s a piece of advice you’ve gained from a guest on an episode?

A: We have a bi-monthly series on our website called Women Making Waves, where we feature badass women who are playing active roles in making waves in their communities (which is how we connected with Dominique and InvisiYouth!). We have learned SO MUCH from each and every woman we’ve had the privilege of interviewing. We recapped some of the highlights on Episode 96, Lessons in Boldness from Women Making Waves. To point a quote out in particular, we refer back to this one a lot from Gender Equity Now’s Executive Director, Sara Sanford: “I’ve acted out of fear and I’ve acted out of bravery. I can’t think of a single time in which I acted out of fear that I would look back on and say, “I’m so glad I was timid. I’m glad I dimmed my light.” Whatever the thing is that you fear, it still comes for you. Wouldn’t you rather it came for you knowing you were true to yourself, that you had acted with integrity? Aren’t you coming out of that fire with your head held higher? I’ve endured consequences for being bold, and I don’t regret a single one of those decisions. If a job or a relationship doesn’t thrive in the midst of your strength, it means it’s not right for you; it doesn’t have enough to offer back to you. If you act boldly, you will find the people and the work that honor your strength – but you won’t get to that place by acting out of fear.” FIRE TWEET.

• What’s something you’ve learned from being a podcast host?

A: The nature of our podcast keeps us accountable for doing the work and doing the research. Each week we challenge ourselves by keeping up with the news and what’s going on in the world around us. It can be exhausting, yes, but ultimately it fuels our curiosity and desire to spark similar dialogue in our listeners own lives. We’ve also learned that vulnerability breeds vulnerability. By being willing to come to the table as we are, we’re creating a space for others to do the same. We’ve gotten so many wonderful messages from our community members who have similar stories or who were inspired to do something by something we said – and that’s an extremely humbling and motivating feeling. That connection keeps us going!

• What’s some advice you’ve gotten that you would pass along to new podcast hosts? 

A: Start. We didn’t have it all figured out when we decided we wanted to start a podcast – we just started. This whole thing has been through so many phases (#same), and ultimately hasn’t been the most by-the-book journey, but it’s been ours and it’s been beautiful. We are all works in progress, and that includes our expressions of creativity. Aside from that, don’t allow all the blogs out there to intimidate you – you don’t need the fanciest equipment or millions of dollars behind your podcast. You don’t need sponsorships to have a platform. If you’re committed to consistency and have a desire to use your voice in this way, just do it! And yes, do your research. 😉 Go in with a vision and a why. Our vision was to make our private conversations public. Why? We believe women are craving authentic connection and reassurance that they are not alone. Despite having gone through a rebrand and the natural evolution of this project, our vision and our why has never wavered.

If you could set a dream episode for your show, who would be part of it? What would it cover?

A: We sometimes lovingly say that our podcast is just a recap our Oprah’s Super Soul Conversations, so we think we’d have to say the obvious answer here: Oprah. There would be birds chirping as we sit with her on her Maui estate’s lawn. We would talk honestly about fear, resilience, purpose and the power of being a woman.  After we finish up she’d call Gayle and Stedman and we’d all make dinner using ingredients hand-harvested from Oprah’s famous garden. Then she would turn to us and say, “You know, after our interview today you’ve convinced me: I am running for President. Oh and also, you can live here if you want.” …Oh sorry, did we go too far?

In Visibility  Today, hosted by Laura Elliot

SoundCloud     Apple Podcasts    Patreon     Twitter Podcast     Twitter for Laura

  • What’s your podcast’s description/all about?

A: In Visibility Today is a (usually!) monthly podcast featuring an extended interview between me and another disabled or chronically ill guest, covering topics ranging from politics, culture, activism, art, and everything in between. The tag line is: sharing who and what’s visible in disability, and every month (my own health allowing), I aim to provide a platform for someone with a chronic illness or disability to share the work they’re doing within and outside of the community.

• What inspired you to make this podcast?

A: Before I became disabled, I completed my MA in Broadcast Journalism, so when I became housebound in 2016 one of the things I really missed was working in a radio newsroom. I decided to use the skills I still had to provide a platform for people like me to share their work and experiences outside of the mainstream media. As well as offering that platform, it’s also been a valuable way for me to learn about disability and chronic illness as a newcomer to this community. I intended the podcast to help other people learn about disability and other topics, and to understand that life doesn’t stop with disability, but actually, I think I’ve ended up learning more than anyone from my guests!

• What is a favorite or memorable episode from your podcast so far?

A: There have been so many it’s very hard to pick! Some highlights include speaking to Eugene Grant about compiling his own library of dwarfism history (his preferred phrasing), and interviewing Gail Ward from Disabled People Against Cuts in the UK, who have been fundamental in challenging the current government on the impact of their austerity measures on disabled people. I’ve also loved talking to author Lydia Ruffles about how chronic migraine lead to her writing her first YA novel, and writer and performer Sabrina Richmond about incorporating British Sign Language into her theatrical work.

• What’s a piece of advice you’ve gained from a guest on an episode?

A: I think the best piece of advice I got was from Sabrina, who spoke very eloquently about making autobiographical work, and the importance of defining how much of yourself you’re willing to share with an audience. She said she always tried to find that balance between honesty and vulnerability, and protecting her own privacy and the important parts of herself that aren’t for public consumption, by asking: will I still feel comfortable with this three months from now, when the adrenaline has faded and the work has already been shared?

• What’s something you’ve learned from being a podcast host?

A: I’ve learnt just how many incredible disabled people there are out there doing so much awesome work! Coming from mainstream media into a much more niche, homebound format has narrowed my focus, and it’s been a privilege to learn about various topics more in-depth than I’d ever have been able to do in a newsroom. Also, the importance of letting a conversation flow naturally, and not being afraid of the mic!

• What is some advice you’ve gotten to pass along to new podcast hosts? 

A: Try not to be too performative when you’re running the show. It’s tempting to over-compensate because obviously you’re relying purely on audio, but the best podcasts feel like being invited into someone’s living room for a chat, so just relax, and enjoy the conversation as you’re recording. Oh – and make sure you actually hit “record”!

 

• If you could set a dream episode for your show, who would be part of it? What would it cover?

A: I have two dream guests that I’d love to have on, and they are Frances Ryan, a journalist at The Guardian, and Jack Monroe, an author, cookbook writer, and campaigner in the UK. I’d love to talk to Frances about working as a disabled freelance journalist with a focus on disability rights and austerity, and how she manages her health and her investigative work. And I’d love to talk to Jack about their adaptive techniques cooking and writing, and their extensive knowledge of diet and health.

Made Visible, hosted by Harper Spero

Website       Apple Podcast        Spotify        Stitcher        Overcast        Google Play

Instagram for Podcast        Twitter for Harper        Instagram for Harper

• What’s your podcast’s description/all about?

A: Made Visible is a podcast that gives a voice to people with invisible illnesses. This podcast aims to change the conversation around invisible illnesses, helping those who experience them–whether as patients, caregivers, or friends or family members–feel more seen and heard. There’s no blueprint about how to live with an invisible illness, or how to be there for someone who has one. The goal of Made Visible is to help people living with invisible illnesses feel less alone as they strive to create a “normal” life, while also creating a new awareness of how we can be sensitive and supportive to people who are navigating these conditions. We never truly know what another person is going through unless we ask, listen, and do our best to understand.

• What inspired you to make this podcast?

A: I spent the first 27 years of my life hiding my invisible illness because I felt so much shame about it, and wanted to fit in. After undergoing a major surgery in 2012 where I could no longer hide my health, I started sharing my story and health challenges with friends and family and felt like I peeled off a layer that had been protecting me. Additionally, I started writing about it and found that my story and experiences resonated with others. But, as I searched for outlets and stories that were focused on invisible illness, I felt like I couldn’t always find content I related to. As an avid podcast listener, I decided to create the content I wanted to consume in podcast form. Thus, in July 2018, Made Visible was born!

• What’s your most memorable or favorite episode so far?

A: There are so many! I don’t play favorites. An episode I enjoyed was with Jaime Walden (Episode 56) who lives with Crohn’s disease. What I loved most about Jaime was that she didn’t hold back–she shared so much of her life, her health and the real struggles she faces while managing this illness…many of which are not so fun to talk about. She brought a lot of humor into our conversation.

• What’s a piece of advice you’ve gained from a guest on an episode?

A: Letty Cottin Pogrebin (Episode 30) talked about the importance of treating people like humans, not as patients. If you’re looking to support someone who is managing an invisible condition, it’s important to identify the things they love and how you can continue to make those things part of their life. Offer to bring them their favorite meal (or just show up with it!) instead of assuming they want soup.

• What’s something you’ve learned from being a podcast host?

A: I’ve been listening to podcasts for a while and when I started this I wanted to ensure that the content did not get stale. Over time, I have worked really hard to make sure I come up with unique questions, listen intently to my guests, and create diverse content so it never becomes repetitive. I never want someone to feel the way I have with other shows and get bored and stop listening.

• What’s some advice you’ve gotten you would pass along to new podcast hosts? 

A: Screen your guests in advance. Ensure they are media trained and good storytellers. Also, if you’re going through an assistant, publicist or manager, ensure the guest you’re recording with knows the premise of the show. This seems obvious but I’ve had a guest record and then ask me what the theme of the show is.

• If you could set a dream episode for your show, who would be part of it? What would it cover?

A: I have been watching Selma Blair’s journey with multiple sclerosis over the last year and am so thrilled to see her willingness to share so much of her day-to-day challenges. It’s important for people of influence to share their stories and help others know they’re not alone. I would love to interview her and talk about the process of deciding to share, how she chooses what she shares and when, and what it’s like to be a mother living with an invisible illness that’s becoming increasingly less invisible.

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Want to know another special addition to this epic InvisiYouth Podcast MasterClass Mini Series?? It’s my selection of some of my favorite episodes of InvisiYouth Chat Sessions!! And this was TOO HARD because we love something about every episode and each wonderful guest! But here are some of my MUST-WATCH and MUST-LISTEN episode from our podcast series!

Season One, Episode 14

For forever, my favorite is our tribute episode to my friend, and one of the best cystic fibrosis activists, Claire Wineland. I was planning with Claire her guest appearance for Season One before she passed away, and I decided to switch around and create a memory episode filled with Claire’s best YouTube moments. Highlight: getting to have Claire’s mom, Melissa, as the special guest because she’s one of the kindest souls I have met. It’s been two years since Claire passed away, and still to this day, I will watch this episode and feel the love Claire was always able to bring into the room.

YouTube        Apple Podcasts        Spotify        Google Play

Season Two Episode 26

Season Two ended with a dream guest, Diversability’s CEO and founder Tiffany Yu. In the early stages of InvisiYouth Chat Sessions development, we made a wishlist of powerful women in the chronic illness and disability space we’d love to have as a guest and Tiffany was on the top of that list. Her episode has an impactful discussion on the importance of good allyship and life lessons we still get comments about from people finding our series with E26.

YouTube        Apple Podcasts        Spotify        Google Play

Season Two Episode 24

Fun Fact: This episode is our most viewed YouTube video AND most popular audio podcast! And with the Kowlessars chatting about relationships with chronic illness, I know why! Anna (founder of People Hope) and her husband Randy have a a dynamic of fun, love, and passion that makes them guests you’ll be hooked to listen to from the first minute. I had the most laughs filming with them, and every listener will share this podcast to friends, it’s so good! Also BTS: we had technical difficulties and had to re-record the episode entirely again, so I got to experience two completely different episodes with Anna and Randy!

YouTube        Apple Podcasts        Spotify        Google Play

Season One Episode 7 and Season Two Episode 25

Our only returning podcast guest of InvisiYouth Chat Sessions is also one of my greatest friends and BOTH of his episodes are podcast gems! Cystic fibrosis activist, producer, and author Travis Flores brought two completely different tones to both episodes and that diversity makes him a standout guest. The friendship with me and Travis is such fun and clear in both E7 and E25 so you feel like you’re just hanging out with some new friends!

YouTube Epi7        Apple Podcasts  Epi7      Spotify Epi7        Google Play Epi7

YouTube Epi25        Apple Podcasts  Epi25      Spotify Epi25        Google Play Epi25

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When I decided to create this Podcast MasterClass, there were a ton of series that our team immediately mentioned that they were huge fans of too. It started when I began developing the premise of InvisiYouth Chat Sessions being the vocal point of our virtual programming. I was finding all these wonderful podcasts, hosted by these talented and diverse people and I was being inspired about the show I was creating for InvisiYouth Charity that I knew could hopefully become an addition to this list of shows I love.

And now InvisiYouth’s team has created our honorable mentions of top podcast picks.

*fun fact: I’ve been a special guest on some of these shows too!

Bit Different Pod        Chronic But Iconic        What Fulfills You?        Hey, Girl

Two Disabled Dudes     Call Your Girlfriend     Sickboy     The Gurls Talk Podcast

Disabled to Enabled    Point of Pain    Gentler Pod     This is Not What I Ordered

Please give a listen to all these podcasts that I am chatting about because they are AMAZING, their hosts are BADASSES, and I am a mega fan of all of them, and feel like I grow as a podcast host because of them too. Make sure to subscribe to their series, AND SUBSCRIBE TO INVISIYOUTH CHAT SESSIONS TOO too because their shows are so much fun!  We learn when we are open-minded, curious and eager to become better people, so when you listen to podcasts, you are truly getting to become a student again, be entertained, and feel that human connection. It’s why I love podcasting, and why I love that InvisiYouth Chat Sessions gets to be the focal point of our virtual programming. Lots of love!

~Dominique, founder and executive director