In today’s episode on advocating for ourselves and all things appointments, Erica kicks us off with chatting about the time in between—in between having tests done and getting a diagnosis.

Susie jumps in with one of her favourite topics… therapy! She’s found benefits in different types of therapy, but touches on her experience with Cognitive Behavioural Therapy (CBT) and how one step in the exercise particularly helps when feeling anxious about health issues.

Susie also gives some tips from her book, ‘Help the Doctor Help You’ to get the best from medical appointments. For example, before leaving your appointment ask, the next steps: “What do I do if things get worse? What if they don’t get better?”

She also might get a little soap-boxy about finding empathy for our doctors and how that goes a long way to relationship building, which in turn, results in better care. And a little housekeeping… Erica may have been having some trouble with her face holes. That’ll happen, folks.

And due to internet troubles, our sound got a little laggy, but shouldn’t cause you too much trouble.

CONTACT INFORMATION:

Email: iseeyouthepodcast@gmail.com

Watch us on YouTube: @iseeyouthepodcast

FB/IG:@iseeyouthepodcast

Substack: I See You – The Podcast

ERICA:

Website: www.theartoftakingupspace.com

IG: @ericazacharias

SUSIE:

Website: www.susieschwartz.com

IG: @authorsusieschwartz

Substack: The Quest for Less Health Stress, Secrets of a Thriller Writer

Book: Help the Doctor Help You: 41 secrets and tips for self-advocacy to get the BEST from your appointments. (Available on Amazon, Waterstones.com, Ingram Spark)

Both Erica and Susie are part-time wheelchair users, and needing mobility aids can come with (unnecessary) shame and embarrassment. (Thanks to outward and inward perceptions of disability). On today’s episode, we unpack the messy emotions that come with this transition.

Susie tells a story of ‘outing’ herself at a local village event, using her wheelchair for the first time in that setting.

We then discuss the benefits to using mobility aids and why it is worth it to push past any shame and use them.

We also discuss how it gets easier, and the emotional punch of being visibly disabled dissipates with time and experience.

What we really want you to know is this: If that transition period is hard, confusing, tricky, just know that that is normal. And it does get easier.

Follow: @chronicallyjenni in IG for education and support

CNIB: https://www.cnib.ca/en/support-us/advocate/advocacy-campaigns/advocating-safer-more-accessible-journeys

CONTACT INFORMATION:

Email: iseeyouthepodcast@gmail.com

Watch us on YouTube: @iseeyouthepodcast

FB/IG:@iseeyouthepodcast

Substack: I See You – The Podcast

ERICA:

Website: www.theartoftakingupspace.com

IG: @ericazacharias

SUSIE:

Website: www.susieschwartz.com

IG: @authorsusieschwartz

Substack: The Quest for Less Health Stress, Secrets of a Thriller Writer

Travelling with disabilities thanks to invisible and chronic illness is not for the faint of heart!

Today the ladies discuss the hidden costs (financial and emotional) of travel.

We talk about the judgement that is either real or perceived as we move through airports and planes with our mobility aids and our physical challenges. And speaking of mobility aids, the real threat of our aids (wheelchairs, etc.) being tossed around and broken, or lost altogether during the travel process adds massive stress to our travels. Not only does it take an emotional toll, but what is one to do with a broken (or lost) aid once their destination is reached? The physical challenges and cost to our health that arise from that are huge.

Susie shares another poop story. (Of course she does.) The need for pre-loaded enemas make packing a nightmare, never mind using them!
But it’s not all about us.

When it comes to chronic illness and disability, your story matters.
When people with lived experience are invited to the table, they improve society standards and symptoms, and can make the process of change so easy.
For those who have the capacity to advocate for safer, more accessible journeys for Canadians, head to these two places:

CNIB: https://www.cnib.ca/en/support-us/advocate/advocacy-campaigns/advocating-safer-more-accessible-journeys

Canada’s Minister of Transportation: Steven MacKinnon

https://www.ourcommons.ca/members/en/steven-mackinnon(88468)#contact

And to read Erica’s article that was mentioned, head over here:

https://www.theartoftakingupspace.com/post/reflections

CONTACT INFORMATION:

Email: iseeyouthepodcast@gmail.com

Watch us on YouTube: @iseeyouthepodcast

FB/IG:@iseeyouthepodcast

Substack: I See You – The Podcast

ERICA:

Website: www.theartoftakingupspace.com

IG: @ericazacharias

SUSIE:

Website: www.susieschwartz.com

IG: @authorsusieschwartz

Substack: The Quest for Less Health Stress, Secrets of a Thriller Writer

Book: Help the Doctor Help You: 41 secrets and tips for self-advocacy to get the BEST from your appointments. (Available on Amazon, Waterstones.com, Ingram Spark)

In this episode, we dive into being a family member living will chronic illness and the emotional ride of guilt, fear, and FOMO (Feelings Of Missing Out) that it puts us on. We also talk of the extra financial burden that comes with disability.

Erica speaks of the mom guilt she feels from not being able to do things like taking the kids trick-or-treating when they were young, and also from having to ask for help from her kids. (Maybe we should examine the societal norms of parenting in general?) And we both have felt the deep sadness of missing out on family activities or gatherings. We’re sure you have too.

And although so comforted by our pets, sometimes we both feel the guilt of not taking our dogs for walks or throwing a ball for their entertainment. Our bodies don’t always allow it, but of course, they don’t know that.

Even garbage day can cause distress. Do we push through and do the mammoth task with consequence? Do we ask someone in the family to do it and then feel like a burden?

And what happens if our partner or caregiver gets injured and can’t help us anymore? Insidious fear about this squats in Susie’s brain.

It’s not all negative though. We discuss the relief of symptoms improving, if even just a little. And sometimes we can make important and exciting events. Erica shares how she was able to attend the AdaptExpo (https://www.adaptexpo.ca), a free, one-day event focused on accessibility, adaptive living, and inclusive sports. There she met the author of the book,
The Day the Hops Slowed Down, a lovely children’s book about chronic illness written and illustrated by a mother and daughter team. We highly recommend it. You can check out their website and get yours here: https://www.chronicallysarcastic.ca/

We also have some laughs over Susie’s Defecating Proctogram. Yes, it is what it sounds like. And there was a full audience cheering her on.

Housekeeping: We apologize for the sound issues in this episode. It gets a little garbly when we are both speaking. Also, due to her MG, Erica’s face muscles sometimes fail her and you might notice her eyes drooping. This is not from disinterest!

CONTACT INFORMATION:

Email: iseeyouthepodcast@gmail.com

Watch us on YouTube: @iseeyouthepodcast

FB/IG:@iseeyouthepodcast

Substack: I See You – The Podcast

ERICA:

Website: www.theartoftakingupspace.com

IG: @ericazacharias

SUSIE:

Website: www.susieschwartz.com

IG: @authorsusieschwartz

Substack: The Quest for Less Health Stress, Secrets of a Thriller Writer

Book: Help the Doctor Help You: 41 secrets and tips for self-advocacy to get the BEST from your appointments. (Available on Amazon, Waterstones.com, Ingram Spark)

In this episode, Susie and Erica chat about the intricacies of friendship when living with chronic illness.

Often, we don’t feel understood by our friends. With ebbing and flowing symptoms, what we are capable of on any given day can be confusing. Trust us… we don’t want to cancel plans. We don’t want to miss out! And we get into it in this episode.

We also dive into the need to sometimes set some boundaries with our friends, to protect our health and manage our symptoms. Did we mention it can get tricky?

Self-validation versus external validation? We even brave this topic.

Join us as we walk the line of this delicate conversation. And listen as Susie shares a ridiculous story of put-in-mouth disease! (She should know better.)

Oh! And a third cohost by the title of ‘Therapy’ joins us, and get used to it, because therapy gets thrown around a LOT in this podcast!

Follow for more!

PS: reminder that the average person on social assistance is 25% below the poverty line in the UK and 30% below the poverty line in Canada
https://campaign2000.ca/disability-poverty-report-card-2025/?utm_source=perplexity

Erica’s article: https://www.theartoftakingupspace.com/post/my-friend-has-a-chronic-illness-and-i-don-t-know-what-to-do

CONTACT INFORMATION:

Email: iseeyouthepodcast@gmail.com

Watch us on YouTube: @iseeyouthepodcast

FB/IG:@iseeyouthepodcast

Substack: I See You – The Podcast

ERICA:

Website: www.theartoftakingupspace.com

IG: @ericazacharias

SUSIE:

Website: www.susieschwartz.com

IG: @authorsusieschwartz

Substack: The Quest for Less Health Stress, Secrets of a Thriller Writer

Book: Help the Doctor Help You: 41 secrets and tips for self-advocacy to get the BEST from your appointments. (Available on Amazon, Waterstones.com, Ingram Spark)

Welcome to I See You – The Podcast!

In this episode Erica, a writer, speaker, and disability justice advocate, tells us about her autoimmune challenges and about living with Myasthenia Gravis. You’ll learn about her family makeup and why she’s determined to advocate for those with invisible illness/disability.

Susie, a writer, speaker, singer-songwriter, and chronic illness advocate, shares about her type 1 diabetes diagnosis that almost killed her at age nine, and the collection of illness that’s jumped aboard since. She’s had a hoover to her eyeballs to regain her sight, lives with gastroparesis, and developed myalgic encephalomyelitis in more recent years. The list goes on, but that’s what the episode is for!

Oh, and did we mention Susie and Erica share the ability to grow brain tumours? (Friendly or not!)

So, join us to find out more about our stories, our goals, and just why the heck we are using precious energy to do this thing!

CONTACT INFO:

Email: iseeyouthepodcast@gmail.com
Watch us on YouTube! @iseeyouthepodcast

Substack: I See You – The Podcast

FB: @iseeyouthepodcast

Erica Zacharias www.theartoftakingupspace.com
IG: @ericazacharias

Susie Schwartz www.susieschwartz.com
IG: @authorsusieschwartz

Substack: The Quest for Less Health Stress, Secrets of a Thriller Writer

Book: Help the Doctor Help You: 31 secrets and tips for self-advocacy to get the BEAT from your appointments