My Invisible Disease

Jenny Nicoll and Kassy Draper

The mental, the emotional, and the spiritual side of living with chronic illness and invisible disease. Hosts, Jenny Nicoll and Kassy Draper, longtime friends and young moms share their experience while in the trenches with symptoms and side effects of chronic illness. Jenny’s wait for transplant and Kassy’s journey to diagnosis inspired the podcast where they interview guests and discuss hacks to keep their heads above water. They see you, and your own struggle with your own invisible disease. And the challenges of balancing motherhood, managing a household, family, and career! Not all days are good and sometimes you don’t make it out of bed, or struggle to make it through the week. With a focus on mindset and a positive perspective, they strive to create a community where mamas can come together and be seen for more than their invisible disease.

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Top 10 My Invisible Disease Episodes

Goodpods has curated a list of the 10 best My Invisible Disease episodes, ranked by the number of listens and likes each episode have garnered from our listeners. If you are listening to My Invisible Disease for the first time, there's no better place to start than with one of these standout episodes. If you are a fan of the show, vote for your favorite My Invisible Disease episode by adding your comments to the episode page.

Living with Familial Adenomatous Polyposis and Short Bowel Syndrome- Meet Jenny Jones

My Invisible Disease

03/06/23 • 30 min

After Jenny Jones is wrongly dismissed as a "whiny child" with chronic abdominal pain, she discovers she has two rare diseases, undergoes multiple surgeries, and fights for the rights of children with rare diseases to receive the necessary health care.
"If you arm yourself with the information and you don't hesitate to ask questions, you don't hesitate to ask for treatments and communicate with your doctors and stay on top of them, you can live a normal life expectancy." - Jenny Jones
Jenny Jones is a published author and rare disease advocate for Familial Adenomatous Polyposis and Short Bowel Syndrome. Diagnosed at a young age, she has dedicated her life to helping others with chronic illness and raising awareness around Invisible Disease.
Jenny Jones suffered from abdominal pain since she was a child; her parents suspected she had inherited a GI disease. After changing insurance plans, a GI specialist confirmed her diagnosis and at age nine, Jenny had to have her colon removed. Over the next few years, she endured more surgeries, including a hole in her intestine, and was left with medical PTSD. Through counselling and physical therapy, Jenny was able to find her confidence and self-love, and now works to help people with chronic illness. Despite her struggles, she finds joy in the simple things, like sipping iced tea, and has written a children's book to help other families understand chronic illnesses.
In this episode, you will learn the following:
1. The struggles of navigating medical treatment and advocating for oneself as a young person with a chronic illness.
2. The positive impact of counselling, physical therapy, and online support for people with chronic illnesses.
Resources:
Connect with Jenny:
Life's a Polyp Blog
Life's a Polyp Youtube Channel
Life's a Polyp with Zeke and Katie
Life's a Polyp Shop
All social media handles are @LifesaPolyp for Facebook, Twitter, Instagram, Tiktok, Pinterest, etc.
Jenny Jones Bio:
Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). She was diagnosed with FAP at age 8 and required her first surgery to remove her colon at age 9. Following life threatening complications, she was soon diagnosed with SBS and would undergo 4 more surgeries that year and develop medical PTSD as a result. After living with an ileostomy for 6 years, Jenny was able to have her ostomy reversed into a Straight Pull Thru but again suffered life threatening complications requiring another surgery the following year. Jenny’s 8th surgery was in 2021 and exacerbated her (at the time) undiagnosed Abdominal Migraine, requiring over a year of continued advocacy and effort for her to regain her quality of life. Due to her medical exper

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Connect with us here:
Website: https://myinvisibledisease.com
YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw
Twitter: https://www.twitter.com/MyInvisibeDis
Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

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Living with MS- Meet Heather Russell-Kay

My Invisible Disease

03/27/23 • 42 min

Living with chronic illness can be hard, but finding support and understanding makes all the difference.
"It is one of those things that when I was first diagnosed, they were like, everyone knows someone with Ms, but I knew absolutely no one. I had no idea about the condition or that it was actually diagnosed quite young in people at all."
Heather Russell-Kay is a teacher and actor diagnosed with MS in 2014 at the age of 24. She has been living with chronic illness for the past nine years and is now an entrepreneur running her own business.
Heather Russell-Kay was shocked to find out she was diagnosed with Multiple Sclerosis at the young age of 26. Despite feeling scared and alone, she pushed through with determination and motivation. She passed her teacher training and went self-employed to gain control over her workload and health. Despite the struggles she faced, Heather was lucky to have a loving partner by her side to hold her hand through it all. Though it took a toll on her mental health, she eventually gained the courage to reach out to other people and accept the help she needed. Heather now hopes to raise more awareness for not only MS, but also the mental health of those living with chronic illnesses.
In this episode, you will learn the following:
1. How to manage the challenges of being diagnosed with MS at a young age
2. How to navigate the difficulty of maintaining a full-time job with MS
3. How to process the emotional toll of living with a chronic illness invisibly.
Resources:
Heather Russell-Kayhttps://dinosaursdonkeysandms.com/
https://twitter.com/dizzythedonkey
https://www.instagram.com/dizzythedonkey/

Chapter Summaries:
[00:11:11]
When you were in school to become a teacher, I think you were already preparing with some of these skills. How did that affect going back to school in the fall for your second year? I was getting over this extreme vertigo. Somehow, somehow got through it.

[00:12:36]
For me, the best thing I did was going self employed. Cutting out the commute and having to get ready can really have a huge impact. Do you do most of your tutoring online? Yes, I do now.

[00:15:48]
Jenny got into relationship about two weeks before the tingling started. She says her partner stuck by her through her worst. The couple are now engaged. Jenny says there's always that guilt of not being able to keep up with everything.

[00:19:20]
When you were diagnosed with MS, where did you seek out support? What did that look like for you as you moved through that transition of diagnosis? My mental health suffered really badly. I even found it hard just going outside because I no longer trusted my body at all.

[00:25:54]
Ms in a lot of ways is invisible. People look at you and they would assume that you're relatively healthy. The idea that on the outside we look reall

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Jenny's Story

My Invisible Disease

12/16/22 • 51 min

For Jenny, the effects of chronic illness have been part of her life since childhood - her grandfather died of complications with his liver and her mother was the first in their family to undergo a liver transplant. But it wasn't until Jenny was 15 that she was officially diagnosed with polycystic kidney and liver disease. The lack of education in the medical community and the lack of knowledge about the effects of invisible illness on families can be heartbreaking. But Jenny found community and support from other people also living with chronic illness and learned to take control of her own health journey. In this article, Jenny will share her story and how she navigated the ups and downs of living with invisible disease.

"I had grown up watching my mom struggle."

When I was 15 and airlifted for a snowboarding accident, I was diagnosed with the same disease. Despite the high risk of disease progression, I lived a normal life and even got married. After having kids, my blood pressure increased and wasn't properly managed for two years due to medical ignorance. I had to fight for what I thought was best for my health and eventually found a community of people who understood and could support me. Despite the struggles, I am grateful for the knowledge and experience I have gained from living with an invisible disease.

In this episode, you will learn the following:

1. What is polycystic kidney disease?

2. What are the risks of polycystic kidney disease?

3. How to manage chronic illness.

Resources:

www.Myinvisibledisease.com

www.healandnourishwellness.com

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Introduction Episode

My Invisible Disease

12/16/22 • 21 min

Invisible Disease is a podcast about the struggles of two moms living with chronic illness and the hacks they use to get through their day-to-day lives.

"But also, I think there's just not enough of it right now. People don't know where to go. And I think when you can share and sometimes be vulnerable and sometimes put your dirty laundry out there, some people are going to hate it and unfollow or ignore”

In this episode, you will learn the following:

1. The struggles of living with invisible disease

2. The challenges of parenting with chronic illness

3. The mental and emotional toll of chronic illness

Resources:

www.Myinvisibledisease.com

www.healandnourishwellness.com

Chapter Summaries:

[00:00:04] - Invisible Disease podcast features two mums living with chronic illness. They have been friends for 14 years and have known each other for a long time. They share their struggles and hacks as they live with this invisible disease. They find it hard to talk about it because it's not something that is shared.

[00:02:16] - Invisible Disease podcast is about chronic illness and parenting with it. It's about sharing your struggles, finding connection and finding community for women. Especially for women. The struggles is not something people talk about. They hide it because it's associated with failure and shame.

[00:06:18] - Chronic illness is on the rise in women and it's becoming more prevalent in people's lives. It's not a situation where we get to laugh about. This is part of life. Chronic illness affects relationships, how it affects parenting and it affects mental health.

[00:12:10] - There's no place to go. When you're diagnosed with chronic illness, people don't know where to go. Having a place to share and to vent is important, but there's not enough of it right now. She switched brokerages because she needed to focus on herself and her business.

[00:19:09] - Nobody understands what it's like to have an invisible disease. http://Myinvisibledisease.com wants to create a space where people can stop hiding and share their truth. They want you to join their Facebook community, where they can connect and continue the conversation.
Join their private Facebook group.

Connect with us:

Instagram

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Living with Chronic Lymphocytic Leukemia- Meet Julie Fry

My Invisible Disease

06/21/23 • 51 min

Julie Fry's Journey: Living with Chronic Lymphocytic Leukemia

Are you looking for a way to cultivate emotional wellbeing and positivity? Julie Fry is here to share her insight on how to promote joy and self-care through gratitude practices.
In this episode, you will be able to:

Master the complexities of chronic lymphocytic leukemia diagnosis and treatment for improved decision-making.
Achieve harmony between entrepreneurship, motherhood, and managing a chronic illness.
Discover invaluable support, resources, and advocacy advice for cancer patients and their loved ones.
Explore groundbreaking clinical trials, therapies, and ways to monitor remission in CLL patients.
Begin embracing gratitude and self-care practices to cultivate positivity and resilience in your life.

My special guest is Julie Fry

Get to know Julie Fry, an inspiring entrepreneur, dedicated mother, and chronic lymphocytic leukemia (CLL) survivor who has harnessed the power of gratitude and self-care to maintain positivity in her life. Julie's journey through her CLL diagnosis, treatment, and balancing motherhood and entrepreneurship is a testament to her strength and resilience. By embracing gratitude practices and self-care, she was able to maintain her well-being and foster a positive outlook on life. Julie's story offers hope and encouragement to others facing similar challenges and seeking support through self-care and positivity.
About Julie

Julie Fry is the Founder of Your Expert Guest, a podcast guest booking agency for service providers and impact-driven leaders that want to speak directly to their ideal client without spending HOURS on social media.

She and her team have booked over 1500 interviews for their clients and can track hundreds of thousands of dollars of business back to being a podcast guest on top-ranked shows.
When she’s not working with her amazing team of guest and host matchmakers, she loves spending time with her family, kayaking, laughing hysterically at SNL sketches and of course, listening to podcasts.

Links:

https://yourexpertguest.com

IG: https://www.instagram.com/yourexpertguest/

LInkedIN: https://www.linkedin.com/in/fryjulie/

The resources mentioned in this episode are:

Visit a doctor if you notice swollen lymph nodes for an extended period of time without being sick.
Seek multiple medical opinions if the initial doctor dismisses your concerns.
Request a referral to an oncologist if blood work shows concerning markers.
Go through a biopsy to get a more accurate diagnosis of lymphoma or other blood cancers.
Seek treatment at a specialized cancer center, such as Seattle Cancer Care Alliance, if possible.
Monitor your health through regular lab work and appointments with your oncologist.
Be prepared for a watch and wait protocol if chemotherapy is not the best treatment option for your specific diagnosis.
Look into oral therapy options for treatment if chemotherapy is ruled out.
Consider the impact of being self-employed and having a chronic illness on your overall well-being.
Advocate for yourself and

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Living with Gastroparesis- A Healing Journey with River Staines

My Invisible Disease

05/16/23 • 35 min

Unlocking Emotional Healing with River Staines: A Chronic Illness Journey

River Staines was just 22 and facing an incurable chronic illness. With numerous healing modalities and a newfound gift for energy work, she was determined to not accept her fate. Against all odds, her remarkable strength and resilience allowed her to heal herself and find her true calling. What was this unexpected twist in River's story that gave her a newfound sense of purpose?
After years of misdiagnoses, invasive tests, and relentless searching for answers, our protagonist has found a way to heal her unexplained symptoms--until her doctor tells her the cure may have permanent side effects. With no other options left and mounting pressure from her employer, she takes the risk of energy work, but the journey to remission will be a long, harrowing one. Will she find her miracle cure? Or will she remain broken?

In this episode, you will be able to:

Experience healing from chronic illness through alternative methods and energy work.
Delve into how Reiki, Akashic Records, and shamanic journeying was used to enhance personal healing.
Tackle emotional trauma, self-worth, and life purpose amidst chronic illness.
Apply Rapid Resolution Therapy and Compassion Key for focused trauma recovery.
Uncover personal values and nurture self-compassion in the face of chronic illness.

Our guest is River Staines

River Staines, a gifted mindset coach and healer, specializes in guiding individuals through emotional trauma, self-worth, and finding purpose amidst chronic illness. With a personal journey that began in her early 20s, River dealt with her own chronic illness, leading her to explore over 84 healing modalities before finding success in energy work. Now, she passionately shares her knowledge and experience with others seeking relief from chronic illness. River is a beacon of hope and an inspiring example of resilience, determination, and the power of the human spirit.
Bio:

River Staines is a mindset coach and healer who helps overachievers redirect energy from self-sabotage, shame, and resentment to reinvent their most extraordinary life and align with the peace they desire. Trained in more than 20 healing modalities, River uses her background in business and psychology to facilitate bespoke, efficient transformation. River is also an author, songwriter, traveler, former triathlete, and animal lover.

Links:

https://www.instagram.com/infiniteliminalspace

Free 5-minute audio meditation for physical healing: https://geni.us/physicalmeditation

Website: infiniteliminalspace.com

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Living with Chronic Fatigue Syndrome- Meet Sue Jackson

My Invisible Disease

04/18/23 • 36 min

Suzan Jackson is a freelance writer whose work focuses on topics related to health, family, travel, and media reviews and has appeared in many magazines, websites, and anthologies. She has had ME/CFS, an immune disorder, since 2002, and also has Lyme disease. Both of her sons also became ill with ME/CFS in 2004, at ages 6 and 10. Her younger son is now fully recovered, after 10 years of mild illness. Her elder son, who recently began his first full-time job, still has ME/CFS as well as three tick-borne infections. Sue and her sons managed to improve their conditions with a number of treatments. She runs several support groups, both online and locally, to help others with similar conditions. Sue has written two blogs for over 17 years: Live with ME/CFS, about living with chronic illnesses, and Book By Book, featuring reviews of books, TV, and movies. She also wrote a book, Finding a New Normal: Living Your Best Life with Chronic Illness that is available in paperback and e-book everywhere.

Book: www.suzanjacksonbooks.com
Finding a New Normal: Living Your Best Life with Chronic Illness, available in print and on all e-book platforms
Suzan Jackson, Writer
www.suzanjackson.com
www.livewithcfs.blogspot.com
https://www.facebook.com/livewithmecfs
https://twitter.com/livewithmecfs
https://www.youtube.com/c/SueJacksonDE/videos
https://www.linkedin.com/in/suzan-jackson-8436878/
www.suebookbybook.blogspot.com
[email protected]
Facebook Groups:
Parents of Kids & Teens with ME/CFS and Related Illnesses
Teens with ME/CFS and Related IllnessesHot Fudge Recipe- Hot Fudge Sauce, Sugar-Free and Mostly Dairy Free

When Sue Jackson was struck with Chronic Fatigue Syndrome in 2002, she never expected her two young sons would be diagnosed with the same debilitating condition. Despite the challenges it posed, Sue found strength in building a community of others affected by CFS and, together, they found ways to cope and manage their symptoms. Little did they know that what started as a quest for relief would turn into a powerful movement of compassion, hope, and resilience.

In this episode, you will be able to:
1. Discover the intricacies of Chronic Fatigue Syndrome diagnosis, symptoms, and treatment hurdles.
2. Uncover the impact of CFS on parenting, relationships, and emotional well-being.
3. Grasp the significance of robust support networks for unseen illnesses.
4. Explore advocacy initiatives that promote CFS awareness and comprehension.
5. Learn how to manage daily responsibilities and self-care routines while living with a chronic condition.

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Living with DYS- Interview with Ambre Minty

My Invisible Disease

02/21/23 • 28 min

"Unlock your inner strength and experience the power of resilience with a chronic illness journey that is truly iconic."
"My health may be chronic, but this ass is iconic."- Ambre Minty
Ambre Minty is a mum and chronic illness warrior, patient leader, feeding tube advocate, and Oley ambassador. She has been diagnosed with dysautonomia, gastropresis, Ehlers Danlos, colonic inertia, and eosinophilic esophagitis and has used IV fluids, feeding tubes, and TPN to manage her conditions.

Ambre Minty was living with a variety of medical conditions, struggling with extreme nausea and fatigue, and unable to eat properly. After three surgeries, discovering IV fluids, and needing a feeding tube, Botox saved the day and allowed her to eat again. With the help of her family and friends, Ambre overcame her health challenges and found a passion for advocacy, lobbying to make medical nutrition needs more accessible for everyone. Despite the pain and frustration along the way, Ambre found strength and a newfound appreciation for food, finding joy in simple moments like tie-dye T-shirt making and getting the occasional ice cream treat.
In this episode, you will learn the following:
1. Living with Gastrointestinal Conditions: Discover how Ambre Minty managed her Gastropresis, Eosinophilic Esophagitis, and Colonic Inertia.
2. Advocacy and Lobbying: Learn how Ambre Minty is working to pass legislation to improve access to medical care and nutrition for those with gastrointestinal conditions.
3. Self Care: Explore how Ambre Minty practices self care and her advice on making memories with her son.
Connect with Ambre Minty:
Instagram: https://www.instagram.com/living_with_dy
Website: https://livingwithdys.com/
Connect with me:
Instagram: https://www.instagram.com/myinvisiblediseasepodcast/
Facebook: www.facebook.com/groups/myinvisibledisease
YouTube: https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw
Twitter: www.twitter.com/MyInvisibeDis
Website: https://myinvisibledisease.com
Chapter Summaries:
[00:00:04]
Welcome to my Invisible Disease podcast. We are here to share our struggles and hacks as two moms living with chronic illness. Tune in and join our community as we share stories and experiences.
[00:00:59]
From severe gastropresis, to eller's danlos, to colonic inertia full gi failure. It's been a journey of living with gi conditions and getting the most basic of care. Botox saved the day.
[00:08:13]
This is, I think, too, where the idea of the invisible disease comes in. People don't realize some of these accommodations that need to be made for your health. We just kind

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Living with Lyme Disease and the Power of Functional Diagnostic Nutrition: Meet Heather Gray

My Invisible Disease

09/05/23 • 43 min

Unlocking the Hidden Secrets of Your Health: The Power of Functional Testing with Heather Gray

Struggling with relentless health issues that seemed to have no cure, Heather Gray's life was a constant battle. From Lyme disease at 13 to severe neurological problems, she felt abandoned by the Western medicine system. But just when she thought all hope was lost, a chance encounter with a podcast introduced her to a revolutionary concept – functional testing. Through this alternative approach, Heather discovered surprising and life-changing insights about her health, from hidden food sensitivities to hidden heavy metals. Join us in this inspiring journey as we delve into the unexpected twist that led Heather to finally understand her body, leaving us all wondering: What other hidden truths could functional testing reveal?

In this episode, you will be able to:

Unearth the importance of functional testing for a holistic assessment of your health.
Understand how food sensitivities can significantly disrupt hormonal balance.
Identify the subtle signs of mold toxicity and its detrimental effects on health.
Grasp the power of healthy foundations to enhance your overall well-being.
Empower yourself with effective self-care strategies to take charge of your health journey.

Heather Gray is a renowned Functional Diagnostic Nutrition practitioner who has rightfully earned herself the title of Lyme Boss. Navigating through her own health trials, she discovered the significance of functional medicine, witnessing a tremendous transformation in her own life. With a mission to help others, her expertise lies in utilizing functional lab work to pinpoint the root causes of health issues rather than just treating the symptoms. Heather’s personal journey spans from dealing with autoimmune diseases, Lyme disease, to overcoming serious mental health challenges. Her real-life experiences have imparted empathy and a unique understanding of holistic health in her role as a healthcare professional.
To book an appointment, purchase my book, or check out my YouTube, Website, or other social media please click here

https://thelymeboss.com/
https://linktr.ee/thelymeboss

The key moments in this episode are:
00:00:00 - Heather's Health Journey,
00:07:51 - Becoming Your Own Health Advocate,
00:10:34 - Discovering Functional Diagnostic Nutrition,
00:11:35 - The Value of FDN,
00:12:24 - Heather's Personal Experience with FDN,
00:13:57 - Importance of Functional Testing,
00:16:40 - Personal Journey and Peeling Back Layers,
00:19:23 - Evaluating Mold in Your Environment,
00:23:17 - Starting Point for Healing,
00:26:05 - The Power of Breath Work,
00:27:38 - Importance of Free Breathing Exercises,
00:29:12 - Heather's Tried and True Self-Care Practices,
00:30:45 - Frustrations with Misunderstandings of Gluten-Free Diets,
00:34:03 - Issues with Food Standards and Organic Products

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Kassy's Story

My Invisible Disease

12/16/22 • 63 min

Kassy Draper, a working mother of two who was leading a busy real estate career until she started experiencing chronic illness symptoms. After many inconclusive tests, she was put on a 10-day cycle of Prednisone to help manage her symptoms. She soon noticed a drastic weight loss, and she was struggling to keep up with her work and home life. On her birthday, she spent the day on the couch, exhausted and eating chocolate. Despite her efforts to keep up appearances, her clients noticed the weight loss, and Kassy was left feeling frustrated and helpless.

Here's what I cover with Kassy Draper in this episode:

1. Kassy Draper's experience with invisible disease as she starts to experience mysterious symptoms of chronic illness that quickly spiral out of control.

2. The neurological symptoms she experienced

3. The range of tests and treatments she underwent

Kassy Draper is a realtor and mother of two from Alberta, Canada. She is currently living with chronic illness and sharing her story to help others.
Resources
Join the Facebook GroupCheck out the WebsiteFollow us on IG

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FAQ

How many episodes does My Invisible Disease have?

My Invisible Disease currently has 21 episodes available.

What topics does My Invisible Disease cover?

The podcast is about Health & Fitness, Mental Health and Podcasts.

What is the most popular episode on My Invisible Disease?

The episode title 'Living with MS- Meet Heather Russell-Kay' is the most popular.

What is the average episode length on My Invisible Disease?

The average episode length on My Invisible Disease is 36 minutes.

How often are episodes of My Invisible Disease released?

Episodes of My Invisible Disease are typically released every 13 days, 22 hours.

When was the first episode of My Invisible Disease?

The first episode of My Invisible Disease was released on Dec 16, 2022.

Show more FAQ

My Invisible Disease

Jenny Nicoll and Kassy Draper

Top 10 My Invisible Disease Episodes

Julie Fry's Journey: Living with Chronic Lymphocytic Leukemia

Unlocking Emotional Healing with River Staines: A Chronic Illness Journey

Unlocking the Hidden Secrets of Your Health: The Power of Functional Testing with Heather Gray

FAQ

How many episodes does My Invisible Disease have?

What topics does My Invisible Disease cover?

What is the most popular episode on My Invisible Disease?

What is the average episode length on My Invisible Disease?

How often are episodes of My Invisible Disease released?

When was the first episode of My Invisible Disease?

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