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From Patient to Person

“Yes, some days I’m in bed – others I am at the piano or in a gondola in Venice. Life is hard. Life is GOOD.” – Susie Schwartz

Susie Schwartz is a Canadian writer, public speaker and singer-songwriter. In her latest book, Help the Doctor Help You: 31 Secrets and Tips to get the BEST from your appointments (available now), Susie compiles her wisdom from an almost lifetime of being the patient into helping the reader have a strong relationship with their doctors. Susie calls it going from patient to person; making sure we’re not just seen as a number, but as a person talking to another person about our health.

In this episode, Susie uses her wickedly funny sense of humor to tell stories of the good, bad and the ugly of her health journey. And she shares invaluable tips on how you can get the most out of your relationship with your doctors.

Discussed in this episode – 

  • A childhood of “collecting diagnoses” and what Susie did to help herself mentally on a daily basis.
  • How almost dying and living on ‘borrowed time’ shaped the way Susie  lives.
  • The difference between emotions and attitude and how recognizing it can help us move through difficult times. 
  • How having tantrums and bad attitudes are just necessary sometimes. 

Guest Spotlight: Susie Schwartz

Podcast guest Susie Schwartz smiling, wearing a black shirt.

Susie is a Canadian writer, public speaker and singer-songwriter currently living in the UK with her husband Don and Chihuahua Carlos.

She was diagnosed with type 1 Diabetes at the age of 9 almost dying, and has been collecting illness ever since  (including temporary blindness – saved by a good surgeon with an eyeball vacuum! and even a brain tumor she had removed in her early twenties!) With a regular newspaper column called, ‘Expert Patient Here to Help!’ Susie is passionate about helping people go from being a patient (just a number), to a person at the doctor’s office.

She has just published her book, ‘Help the Doctor Help You: 31 Secrets and tips for getting the BEST at your Appointments‘ and is working on a memoir about her chronic illness life.

She also regularly releases music under her two artist names: Susie Bird and Suschwa everywhere there is music.

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Live Your Life, Not Your Diagnosis

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“It is a true guide on how to listen to our bodies, connect to them, nurture ourselves and understand the power of our mindset.”

“I will be recommending Live Your Life, Not Your Diagnosis widely to all my patients when dealing with a diagnosis or setback!”

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Stop Carrying the Weight of Your MS

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NOTE: This podcast was transcribed by an AI tool. Please forgive any typos or errors.

Susie Schwartz

[00:00:00] Andrea: When I started researching this week's guest, the first thing that drew my attention was the picture of her sweet dog, Carlos. He is this handsome little guy just staring off at something in the distance. After seeing him all over her website, I just knew Susie and I would be friends because clearly the key to my heart is a sweet little doggy face.
Now, the good news is for those of you who aren't completely smitten with dogs, is that Susie is so much more. She's a beautiful musician, a funny and relatable writer, and a chronic illness patient who turns her many experiences into tips and anecdotes to help others, and she's a wealth of knowledge. I'm talking to Susie Schwartz about growing up riding horses on the prairie in Canada.
Her heartfelt and sometimes really funny stories about her ongoing medical journey and about what a positive mindset really means. I loved talking and laughing with Susie, and I think you will. Please enjoy this week's episode and visit Andrea Hanson for more on Susie Schwartz resources we talked about in the show and transcripts from today's episode.
You can find that link in the episode description. Welcome to the Live Your Life, not Your Diagnosis podcast. I'm Andrea Hansen, author, motivational speaker, and master certified coach. When I was diagnosed with multiple sclerosis, I was told I would never reach my goals, but I did and I'm on a mission to prove that life with a chronic illness can still be expansive and quite remarkable.
Everyone has their own unique. I'm talking to people living with a chronic illness that come from different backgrounds, have different points of view, and are achieving amazing life goals of all kinds to inspire you to achieve what you thought was impossible. These stories are raw, uncensored and judgment free listener discretion is advised.
I am here with Susie Schwartz. Susie is a Canadian writer, public speaker, and singer. So, Currently living in the UK with her husband Don and Chihuahua Carlos. She was diagnosed with type one diabetes at the age of nine, almost dying, and has been collecting illnesses ever since, including temporary blindness, saved by a good surgeon with an eyeball vacuum, which we will totally get into, and even a brain tumor that she had removed in her early twenties.
With a regular newspaper column called Expert Patient here to help. Susie is passionate about helping people go from being a patient, just a number to a person at the doctor's office. She has just finished a manuscript called Help the Doctor Help You. 25 Tips for Getting the Best at Your Appointments, and Is working on a memoir about her chronic illness life.
She also regularly releases music under her two artists' names. Susie Bird and Sushwa. Everywhere there is music. Susie, welcome.
[00:02:52] Susie: Oh, thank you. It's great to be here.
[00:02:55] Andrea: We were just talking before we started recording, and I was telling Susie about how I have been reading. There's so much out there as far as articles and blogs and everything that she's written.
It's amazing. It's like, it's almost like potato chips. It's like before you realize it, you've read 50 things. Like I think I read your entire website immediately and all of a sudden you're like, oh my God, I just ate the whole bag.
[00:03:21] Susie: That's an analogy I've not heard before when, in regards to my writing, but I like it.
[00:03:28] Andrea: But it is, it's great. It, it's so relatable. Have you. Been a writer?
[00:03:33] Susie: Actually, no. Like I was never one to have a regular diary. I would go in spurts. If I was basically having a hard time in life, then I might do some diary writing. And then it wasn't until my probably, hmm, old am I now late twenties, that I started blogging regularly and I had one year that I blogged every single day.
And that doesn't happen anymore cause I have too much other stuff going. But since then I've been much more active and I've written, well, five manuscripts thus far, so that's kept me busy. And then some, the newspaper and such things like that, so, mm-hmm. Mm-hmm.
[00:04:13] Andrea: Is it all non-fiction? What you write?
[00:04:15] Susie: Most of it.
I actually wrote a fiction novel and kind of got stuck in the final editing stage. So I never did actually try to even get it published, but generally speaking, it's non-fiction, so.
[00:04:30] Andrea: Mm-hmm. So I always start by talking about how. We are not our illness, we are not our diagnosis. We are not defined by even just the weird symptoms that our bodies have sometimes that aren't even diagnosed.
So talk to me. I know you were diagnosed very young with your type one diabetes, but talk to me about what life was like before you were diagnosed, even though I know you were pretty young and things that you were doing outside of that d.
[00:05:04] Susie: Sure. Well, to be honest, I, because I was nine the before and the after kind of gets blurred together.
There's certain things that jump out in me at the time of diagnosis and then since, and then I know some things that would've been happening before. Such as we lived on a farm that we had hogs and cows and grain, and I had a horse that was my best friend as a, as a young child. And uh, I used to ride Misty regularly.
And without getting into too much detail, my mom had some. Also some chronic illness, but some mental illness her whole life as well. So there was navigating that. And my dad obviously was very busy on the farm and so the details of things of time, I'm terrible at timeframes, I'm not gonna lie. Mm. But I do remember just wandering the fields with my horse.
I'd ride bare back. No, no bridal or anything. I just jump on our back and away we'd go. And there was a creek running through the the woods and I just loved to play out there. And I did actually have a human best friend as well named Susan and she come and we would also just be, I was very tomboyish back then and I'm so not that now, so I'm not sure what changed.
But I think just being on the farm kind of, we didn't have a lot of money and so the activities and things we did were just, a lot of it was outside, so I went with it. Mm-hmm. Yeah. I
[00:06:28] Andrea: love it. Do you still do things like horseback.
[00:06:30] Susie: No, I haven't had a horse for quite a few years, and now I'd be a little nervous to get on one just because of pain issues that could flare up as a result.
So if I get the chance, I always interact with a horse, but I haven't ridden for many years. So,
[00:06:49] Andrea: yeah, I think horses are lovely. There's just something, there's something about it. And one of the, the best experiences I've had is, Working. I was at a, a camp that was mostly for people with MS because that's my perspective is through MS.
And I helped with horse therapy with people, right? That were living with ms. And that was one of the most amazing things to have witnessed and to talk to people about what that felt like. Many people had lost their mobility and sort of be on the horse and to feel the horse moving was. Something that kind of echoes, I guess, the way it feels when you're moving and, yeah.
I mean tears. It was, it was magical. Yeah. I believe it. So you were, you know, we just read that you almost died when you were nine. Yeah.
[00:07:43] Susie: We thought I had the flu and, Hmm. So it just kind of was slowly getting worse over a two week. I laid on the living room couch most of the time and being pumped full of sugary pop as you do when you're, when you're ill and you think you have the flu to get some liquids and electrolytes in there, and was losing weight rapidly.
And finally my mum realized how thin I had gotten so, Off to the doctor we went and the doctor, the GP said, go to the city children's emergency immediately. You have type one diabetes. And so we drove the two hour drive from the farm to the city. Uh, I don't think I've ever seen my dad drive that fast, but I was kind of already in and out of consciousness at that point.
So I kind of remember a bit of the car ride. I remember being under the bright lights and hands and needles everywhere being poked into me once I was in the er, but kind of in and out. Mom was crying in the background. That's a memory that I have, but apparently if I had gone to sleep that night, I wouldn't have woke up.
So ended up in the I C U for about four days and. The hospital for two weeks total. And I'd like to say I've been going strong ever since, but diabetes is exhausting. So strong might not be the word I would use, but certainly have been collecting tools and learning about the disease as much as I can to, to get the best control that I can with it so,
[00:09:25] Andrea: so very.
Quickly, because I know not everybody knows necessarily what Type one diabetes is like, but I always, whenever I ask people this question, I'm always a little like, you can say it quickly, don't go into it. Because the number one question I hate when people ask me, like when people are interviewing me is, so tell me about ms.
What is ms? And I'm like, I don't wanna like, but. Give us like the third grade approach of like what is type one diabetes? Cuz I know that people probably have somewhat of a working knowledge of diabetes in general, but there's a difference between type one and type two.
[00:10:00] Susie: Type one diabetes is the best working theory currently is that it's an autoimmune disease.
So chances are I did have the flu or something and it attacks the, the good with the bad and the difference between type one and type two is, My pancreas stopped producing insulin altogether, and insulin is basically, in layman's terms terms, one of the things that balances blood sugar, that if you have too much, it does lots of damage.
And type two diabetes, which people are more knowledgeable about, is not autoimmune. There's factors such as perhaps diet or weight, although you don't have to be overweight to have it, but perhaps more internal belly fat, but you lose the ability to absorb or use the insulin that your body is making or it can't keep up.
So that's kind of the difference. And uh, last time I checked, Uh, I believe the ratio is about 15 or 17% of people with diabetes is type one, and the rest is type two. There is of course, gestational and, and a couple other ones that are sometimes temporary. They make up a much smaller number, but. Yeah. So that's kind of in a quick nutshell, the difference.
And in
[00:11:18] Andrea: just a quick non icky nutshell. Yeah,
[00:11:21] Susie: that's right. Well, science there. Basic science. Basic science.
[00:11:27] Andrea: Basic science. So how was that? What was that like? I mean, I know that it's hard, right? Like if any of us think back to like what it was like when we were nine, it's like, what was I doing? But. What was it like having that diagnosis and going through the rest of your childhood?
And then on to when you say y your terms as you collected, collected dia, like blah, blah, blah. I can't even say that you collected diagnoses. So talk a little bit about growing up cuz you had the whole rest of your childhood and everything ahead of you.
[00:12:04] Susie: Well, when I first got diagnosed with the diabetes, I was a rockstar because I got to go to school and show off my needles and my finger poke machine and all of those things.
And the, there were the rest of the kids in my very small school were fascinated that I had almost died and that I had all this equipment and that I had this disease that were off fairly quickly. Although I, I don't know how old I would've been, but probably not too much longer. I, I wouldn't call it a rebellion, but I just didn't wanna have to care about the diabetes, so I ate a lot of things that weren't good for me, and I didn't always take the insulin to, to manage the carbs and sugar that I was intaking.
And so I had quite poor control. I would guess probably from the age of 11 or 12. Um, going forward. Until fast forward, I had some things go wrong and made some drastic changes, but in my teens, they did a kidney biopsy and told me that I had the beginning beginnings of kidney disease and that kidney biopsy was a, a treat.
Let me, But it was my first introduction to what can go wrong from diabetes. And that's also when a doctor told me if I didn't get good control, I could be dead by 25. I'm passionate about informing doctors whenever I get the chance or med students, that that's, that's probably not a helpful statement.
And when I think about it now, I'm way beyond 25, but it still makes me go, Ooh, I'm living on borrow time, which I know is not the case, but that fear tactic. Words matter. Let's just say that. Yeah. And yeah, so then that was kind of, yeah, the, the kidney thing was the first, first hiccup, although my kidneys actually are doing pretty good these days, so they didn't deteriorate from that point.
Then in my early twenties, I started, as you quoted me on, saying, collecting other things. So, did you want me to get into what I started collect? At that point,
[00:14:16] Andrea: of course, if you want to. Absolutely.
[00:14:18] Susie: Yeah. So the, the, the first thing when I was 21, actually had nothing to do with diabetes. It was random and it was a pituitary tumor, which is on the front of your brain and.
Quite rare, but we figured out, my main symptom was that I was lactating as if I was pregnant or had just had a baby, but I was not pregnant nor just had had a baby. So I actually woke up on my honeymoon the day after my wedding. With like a soaking t-shirt because there you go, producing milk. So we knew something was definitely wrong.
So yes, they found that that's what it was. And then they, they said it was big enough that they needed to do surgery to take it out. Sometimes they can manage them with medication, but they said it needed to come out because it can cause damage, headaches, problems with the eyes, all sorts of things. So again, that was quite the surgery.
And I also recommend to all the world out there that. You're looking for a job that you don't phone the person who's just had brain surgery and ask them if they will hire you. What?
Just put that out there. Uh, at the time I was
[00:15:31] Andrea: So you were hiring while you had brain surgery? Well,
[00:15:34] Susie: yeah. Here's what happened is I was actually managing a Subway sandwiches or a sandwich company restaurant. Sure. And I was off, obviously in bed recovering. And it was actually the first phone call I.
Answered and apparently my man, like I was the manager of that location, but the general manager was kind of looking after things while I was off and had put a now hiring sign up, and this person that called me knew personally that I was the manager and so decided to call me directly at home knowing that I had just had surgery and was off.
Yeah. She didn't get the job.
[00:16:15] Andrea: No. Yeah, I mean, So many levels there. So many levels. I think starting where it's like you just don't do that when you're trying to get a job.
[00:16:24] Susie: No, I know. So anyways, I just thought I'd just give that little bit of word of advice. But anyways, moving along. Oh my gosh. Also, in my twenties I developed fibromyalgia, which thankfully I had a doctor that recognized it.
Cause back then it wasn't super well known. But she recognized it. Yeah. It's really only recently. Yeah. And so she, she was sured that, that's what it was, but I also was developing neuropathy from the diabetes, so there is some overlap there. So it's sometimes hard to tell kind of what's what. But on the neuropathy side of things, I, I have peripheral neuropathy, so, Feet and hands and such, but also autonomic, which means it affects your internal organs that are supposed to do their job on their own.
So my issue is gastroparesis, which is a massive slowing down of. My whole gastrointestinal system from top to bottom, and it got bad enough that I ended up needing an implant, a pacer, a gastric pacer that was experimental, but they, um, implanted it into my belly wall, and then it had wires wormed up. two attached to the bottom of my stomach.
And the idea was that it would stimulate movement for the stomach to empty and then things to move down from there. It was a disaster, not gonna lie, because it caused pain and gave me no benefit. And when I say pain, like debilitating, I, every time I took a bite of food, I was doubled over. So the good news is I lost weight, which I needed to.
So I actually got down to a, a goal weight during that time. Sadly, I couldn't enjoy it cause I was in a lot of pain. But, but backing up a little bit, my eyes were also affected. Went to a routine eye doctor appointment and they told me I was in, had stage four retinopathy and that I could lose my sight. And if I did, they would have to do surgery to bring it back and try at least.
And in the meantime, they did a bunch of laser surgery to try to stop bleeding from happening internally, which is what causes the blindness. So a few months later after being absolutely paralyzed on the couch and not being able to do anything but cook a, a frozen pizza for my husband. When he came home, I was between jobs at the time, so I had nothing to do but worry about my problems.
Then I did lose sight in both eyes, but separately, so. That's when the eyeball Hoover comes in. As you mentioned in the intro, the good surgeon with a vacuum. A good surgeon with a vacuum. Yes. So the, the first surgery was my left eye. And because your eyes, when you're in REM sleep, they move, they can't put you under general anesthetic.
Mm-hmm. So they just did local freezing of the eyeball. So I was in this dark room except for the spotlight on me, and the surgeon had his headlamp on and then, And did froze the eyeball. And then next thing you know, I could see from the inside the vacuum cleaner. Hoovering up. Sorry, I'm British and Canadian.
Hoovering back. It's okay. Hoovering up the big leak of blood, which was what was blocking my sight. But I didn't feel any pain, but I could see it. So afterwards I said like, doc, was this supposed to happen? Like that was the freakiest thing I've ever seen in my life. He's like, oh yeah, that can happen sometimes you should have said something.
And I'm like, you've gotta. Vacuum in my eyeball and you think I'm gonna risk saying words? Not likely. So anyways, yeah, thankfully that did restore most of my sight. I have some, um, Residual, I suppose, problems with my peripheral and such. But anyways, I'm, I'm doing pretty good. But then the, the right eye bled had to repeat.
At this time, I did not see the Hoover, but I felt everything, so the freezing didn't do its job for that. So I sometimes go in circles and think, which would I do? What should I choose? If I had to, had to choose, do it again, which is always a possibility. Obviously it's not in my control, so. Mm-hmm. So that was the, the hoover to the eyeball and surreal doesn't even begin to describe it.
[00:20:42] Andrea: I can imagine. Yeah, I can imagine. Yeah. It is, it's always been a strange and fascinating thing to me that anytime you have anything happening, you know, done to your eyeball, like, I remember my parents both had cataract surgery and they talked about how they were awake and looking at it as it was happening, and it's.
[00:21:02] Susie: Yes, but you know what I have to say, I mean, I'm driving, I'm riding, I'm, I can see well enough to live my life normally. I mean, every once in a while I don't notice a curb in the dark and someone points it out to me. But wow. The things they can do is, is incredible. So I'm so thankful for those crazy surgeries.
[00:21:22] Andrea: Yes. Yeah. It sounds like there was a time period where there was a lot of diagnoses and a lot of. Kind of coming at you, which can happen, right? We can. Sometimes it can feel like it snowballs or it's like a domino effect. What helped you during that time to cope and keep your, keep your wits?
[00:21:43] Susie: Well, I'll say that the diabetes, the gastroparesis, and now I also have ME, which is chronic fatigue syndrome.
So much more than fatigue. Anyways, they actually test me regularly for MS because the symptoms that I get are very, very similar. My legs stop working sometimes my arms, anyways. The fatigue can be ridiculous, and I only mentioned that because there was a point in time when I was bedridden, couldn't lift a fork.
Press the buttons on my insulin pump and my husband was doing everything for me. So when I think of the hard times, the, the getting the diagnosis or the trying to get the diagnosis or the, the times that I couldn't see or was in bed, there were some things definitely that helped and to this day helped.
So when I was in the period of time waiting to possibly go blind, I realized that I play the piano by ear. I don't need to look at notes. So I realized that blindness could not take my music away from me. I played, played publicly in a contemporary church band for many years and well practiced, I suppose, with playing by ear.
Cause I never, never used notes. And at that point I thought, well, I'm going to try writing some music. It was both therapeutic because my first songs that came out were quite dark, were my feelings being vomited. All over the piano keys and the notes in front of me, which let me tell you that that is true therapy.
And yeah, so I started writing music at that point. And that's kind of around the time when I started getting serious about the prose writing as well, which also is therapeutic with the blogging and such. It's, most of my material is kind of about my life and I weave a lot of humor into it, but also just kind of the nitty gritty and the the good, the bad, and the ugly, which seems to resonate with people because I think that being real and vulnerable counts for a lot, but that also helped.
As well, I went into proper therapy. My husband said to me one day, he's like, look, you've got so much going on with your, your diseases that perhaps you should talk to someone. And I resisted at first because I had seen my mom in and out of therapy for her whole life, and with not a lot of great result.
And I didn't want to admit that I too could need some help like she did, which I think now is absolutely ridiculous because I think everybody can benefit from therapy even if it's just talk. Yeah. I mean, even I started going to therapy because of my health issues, and then I ended up making sessions to talk about, yeah, talk about my relationship with my mom, or talk about moving to the UK or whatever it might be, and wow, the things that you can improve upon in your.
When you hear what you're feeling and thinking and have someone reflect them back to you and talk it out. Huge. Mm-hmm. Yes. The moving to UK was amazing. We've done travel since, which is hard work when you're chronically ill, but amazing the places we get to see and yeah, the writing, the music, the therapy, I would say are the, the highlights.
When I was bedridden, I was desperate to write and I could only manage. Sitting upright for perhaps a paragraph's worth on a good day, but I was bound and determined that I was gonna write a paragraph. And it's those kind of things that keeps you going. They're my passions and yeah, I'm so lucky that my passions are so self-reflective and, and yeah, therapeutic.
[00:25:28] Andrea: Yeah. I was reading one of your articles and you said, it's funny how good terrible feels. After worse, happenss. Mm. And it's interesting because like you said, you give the good, the bad, the ugly and how, you know, that's what is definitely reflected and, and this vulnerability. But also it's very much from a positive mindset space, which I think is really interest.
[00:25:58] Susie: Yeah. And I have to say that I, I have somewhat of an aversion to the movement of. Just, just think good thoughts or stay positive or,
[00:26:09] Andrea: yeah. And that's, you know, and, and that's, That's my point, right? mm. It's people think that a positive mindset means positive thinking all the time, which is not at all what it is.
Right? And so showing all of that, the good, the bad, the ugly is part of a positive mindset.
[00:26:26] Susie: Well, and I've, I've come to realize at this stage in my life or leading up to it that you can feel joy and pain at the same time. You can be in darkness and still see light. You know, both the hard and the good can be happening simultaneously, and so I feel like, I mean, when I stop laughing, then you know that I'm really in trouble because I just think usually, Like, I might be at the hospital to get another M r I to find out if I have ms, but dang it, I am laughing at the fact that I find out 20 minutes later that the back of my gown has been wide open.
I mean, I don't intentionally always look for the good in things, but, but there usually is, there usually is something, something in there. That's it's, it's just all mixed up. It's all mixed up. The happy and the, and the sad, and the hard and the good. So yeah, I feel like people tell me. That I am so positive considering what I go through, and sometimes I'll be honest, that feels like pressure.
I'm like, oh shoot. Like I gotta, mm-hmm. I gotta gotta stay positive. But I think it's just the recognizing, cuz I will say exactly how hard it is too, or if I'm struggling or mm-hmm. The, the pain of it. I think it's just, it's just putting it all out there. And I was saying the other day, sometimes we hear the term, it could always be worse and obviously it can always be worse, but I've realized even within my own story, like I just on Monday had my big toenails removed and they were causing me, causing me trouble and had to come off.
And I'd been through a similar procedure before and I knew that the anesthetic needles were gonna hurt and I. Sure can look back at the brain surgery or the eyeball surgery and go, wow, that was worse. But you know what? On Monday my toenails were coming off and that was bad enough, and it's not a comparison even within my own story.
So I just think that it's not a competition. And let me tell you, I could tell you stories about the hilarity that was happening while I was having my toenails ripped off because the doctor and the nurse and I were bantering back and forth like crazy. It's not all one thing, but anyways. Mm-hmm. I just thought you prompted some thought about that.
Yeah. Things could always be worse and I thought I would just address that quickly cuz I, I think that's important to recognize it. It sure. But it's
[00:29:04] Andrea: still hard..
Yeah, that's what really, when I read that in your article, that's what really piqued my interest because as I'm working with people on mindset and, and mindset is such a trend right now.
Mm. Talking about mindset as a trend mm-hmm. Itself is just happening all the time. And, but talking about it and the idea of a positive mindset is great. And I think, you know, some people call it a growth mindset. There's a lot of different ways to look at it, but. I always love when I'm talking to someone who is such an example of what it actually looks like.
Hmm. It actually looks like allowing yourself to say like, this sucks, and right now this is the worst thing. Or, you know what? I'm going to. Yell at the doctor as to try to work through the pain that's happening. While I have this procedure happening, I'm going to, I'm going to allow myself to be on the couch and not do anything.
I'm gonna allow myself to have a pity party. I talk about allowing myself to have tantrums. It's essential and it's not the forcing positivity. We were talking about that earlier. It's like nothing gets me going more than forcing the positivity. So many things about that is wrong, but it's about allowing both the positive and the negative and just rolling with it.
And that I think is where it, you find the laughter and you find the resilience and you find the ability to, I almost think it's, it's part of a confidence. Right of saying like, look, I can confidently say that even though I've been through things that might sound like they were worse, Monday was the worst.
Right. And
[00:30:41] Susie: well, and I know that it wasn't the worst ever, but on Monday it was the worst. Yeah. Yeah. And I'm glad you are a believer in tantrums because when it comes to type one diabetes, it. It's 24 7 care. We don't get a minute of the day off from it. My insulin pump is always attached. It's alarming me.
I've gotta think about all the choices that I make in a day, and burnout is real. And I've learned probably within the last six or eight years that when I get to that point of hitting the wall. I've gotta allow myself a day, and that day might look like me in the fetal position in my, under my duvet, in my bed with, of course, my puppy Carlos.
Or it might mean going for a walk with a friend and just venting. It might mean saying to my husband, like, I, I can't do this day, so anything that comes outta my mouth, please pray, forgive cuz it's, it's not necessarily going to be pretty, obviously I try not to take it out on other people, but I will cry.
I will go for a walk with myself and scream into the bushes, but I need a day and then always the next day I'm like, yeah, I can do this again. I can do this. I
[00:32:00] Andrea: think it's so important to allow yourself to do that. Hmm.
[00:32:04] Susie: Yeah, I agree. Absolutely. We have to, I think we have to name to ourselves and embrace what we're feeling and be okay with it, and then whatever it takes.
So if it's talking to a friend or journaling or whatever tools you've realized you've got that you can do to express those emotions. Then they'll pass through us. We can let them go and not get stuck in them. But I'm realizing that emotions and attitude are two different things, and I don't think we can control our emotions.
I think they're happening within us whether we want them to or not. And if we try to ignore them, let me tell you, our bodies will tell us. But attitude is something I think that we have more control over and. When it comes to the topic of toxic positivity, I think that's sometimes where we get a little bit mixed up and we think that people shouldn't be feeling those emotions cause they're negative emotions.
Well, no, they're going to be feeling them anyway. How do we help each other have great attitudes? Or how do we help herself have a better attitude so that we can take that next step forward while still recognizing that the emotional journey is happening. I just, I think we, we shouldn't.
[00:33:21] Andrea: Yeah. I love that it, I think another step on that is to allow ourselves to have a bad attitude sometimes.
Mm. Because sometimes we're just gonna have a bad
[00:33:29] Susie: attitude. Oh good. I'm glad you said that too. Woohoo. Few relief.
[00:33:40] Andrea: Sometimes it's gonna happen.
[00:33:42] Susie: That's just it. I think our behaviors need, our behaviors need to be kept in check when it comes to others. But yes. Good. I'm, I have a bad attitude sometimes, and I'm glad you're allowing it and I'm gonna go with that.
[00:33:54] Andrea: that's hilarious. Glad I'm allowing it. Well, and that's part of it. That's the part that I am, I look at myself as like this crusader almost about mindset, because I think people censor themselves and they feel either, like you said before, like you can feel pressure from people because there are so, Of these like cliched comments that would just be positive and just look at the bright side and don't think negatively, you know, all of those things right are coming at us and we have very real feelings about very real things that are going on in our lives because we're human.
And this idea that not only that we can't have a negative emotion, we can't have a negative thought, we can't have a negative attitude is bad because socially it doesn't look very nice or accessible. But the idea that I think people can can take it to that next level of, oh, but if I do that, it's bad for my health, it's bad for me.
It's going to do all of these bad things to my body. To think negatively or feel negative emotion or have a bad attitude and I can't, you know, yell it enough that it's the opposite. Is true is
[00:35:11] Susie: yes, I agree. I agree. Right. I apparently, well I read it years ago, but Tuesdays with Morrie, I forget what it was he had, if it was ALS or or something of the sort, but it was going downhill and he allowed himself an hour every morning when he woke up to feel sorry for himself and then mm-hmm Then he cut himself off from that.
But yeah. Gosh, like good for you man. Cuz of course you've got things to feel sorry for yourself about, and I do think sometimes people. Say these things to us, trying to e encourage us and show us support, but I think that sometimes it's about them. They can't handle their own negative emotions. I'm not even sure I like that term, but I don't know what else to replace negative with.
But the, the harder emotions, the less feel good emotions. I think people sometimes can't handle their own, nevermind someone else's. They don't know what to do with our tears. They, they're embarrassed to shed their own tears. So I think sometimes it's self-preservation. And I also think that it's only fair that if we as chronically ill or struggling folks don't want to hear the cliches that we talk about some options because I think there are reframes for them.
I think there are ways to be supportive. Everything happens for a reason. Could perhaps instead. Man, I don't understand why things are hard for you. Not trying to clear up the confusion for anybody or stay positive could be, you know, I'm hoping that you will recover quickly or that you will find some relief.
I just think that there's, there's ways of being supportive that have less of a sting to them and mm. Always, if someone doesn't know what to say, they can just say that because the, the loaded statement of, I don't know what to say, shows so much support. In itself because it shows that it's an impossible situation and there's no words for it, and that feels supportive.
So I just think on that topic of toxic, or I like to call it negative positivity. I think toxic is a strong word just because people mean well, generally speaking. But yeah, I just think, let's reframe, reframe it. Let's start using some new language and, and maybe we can learn from each other that way. Um, so that it.
True support.
[00:37:33] Andrea: Yeah. I love how you say that we need to reframe when we're supporting because often just looking at it from, you know, our perspective as we're often the ones as the patient or with something happening and. It's very hard to not be vulnerable in that situation. It's very hard to have, right?
I mean, even if you put up your, your defenses, it's like you still feel so raw and so vulnerable. And the best help you can get emotionally from another person is someone who is saying, I will meet you. Right. I'm not gonna put my defenses up. I'm not gonna project and say things because I can't take it.
I'm gonna be vulnerable with you and say, I don't know what's happening, but I am
[00:38:21] Susie: Absolutely, man. Nothing says it like a silent hug. Hmm. That's that sometimes just says it all for me. Just, I have a one friend who's amazing at that. She just won't say anything. She'll lean in and hug me, but let me cry into her shoulder if I need to.
There's a cliche for you, but it really happens. So
[00:38:41] Andrea: when we're firm, Hey. So those are cliches for a reason. That's right. They came from
[00:38:44] Susie: somewhere. Exactly. Yeah, I agree. Absolutely.
[00:38:48] Andrea: I think that's why dogs are so amazing is because they don't. They don't reject, they don't try to say anything.
[00:38:54] Susie: Pet therapy is a thing.
People, I used to think, oh, come on. Really Like you can get certified pets that can now go places like planes and as a therapeutic animal. But I, in recent years, especially since my major crash when I was bedridden, let me tell you, getting my puppy, Carlos, he's not a puppy anymore, but I'll always call him puppy.
He turns three on Sunday actually. But he's my little adorable chihuahua and yeah, I told my husband the other day, he's my number one. He's delicious. There's pictures of him plastering all over the internet, so you can check him out people if you want to, because he's a handsome little guy.
[00:39:33] Andrea: But he is handsome.
That handsome man. Kind of like his eyes are like looking into the distance, like he's very like romance novel cover.
[00:39:43] Susie: Well, and he is not, he doesn't have the bulge eyes that. Some Chihuahuas have, so we weren't drawn to chihuahuas in particular. We just wanted small so that he'd be portable and could come with us places and not leave her all over our house, which he absolutely does.
It is, I feel lied to. But anyways, he's cute chihuahua, which isn't always the case. But I suppose it's in the eye of the beholder, so who am I to judge?
[00:40:10] Andrea: Absolutely. Absolutely. No, he just looks precious. So when did you start turning towards, and maybe it sounds actually like it happened more organically, but when did you start to more purposefully say, you know, I'm gonna use my experiences, my life experiences, and my writing to help other people?
You say you help them go from patient to person, which I think we can all resonate with.
[00:40:37] Susie: Well, I've found in recent years that I don't know if it's because as I'm getting older, my friends and family are getting older and they need the doctor more, so therefore there's more discussion around that. It's always been a part of my life, but I have very solid relationships with almost all of my.
My doctors and or diabetes nurses or whoever, and apart from one pain specialist that I saw once and decided never again cuz well that's another story. And then one other doctor that thankfully I didn't need to see again. I have really solid relationships with them and I think having chronic illness so young you learn.
Ways of getting heard and understood. And so as these conversations are now happening with my friends and family, I'm realizing, oh, people don't know how to connect. There's this barrier between doctor patient and the patient thinks that the doctor has all the answers or. Even if they don't have the answers that then that's the answer that there are none.
Or if the doctor said, then I must, and doctors often, they've got busy schedules, they're on time constraints. They're just trying to problem solve. So you walk in with a problem, they're just trying to figure out what it is. And I've learned that simple things like when I walk into their office and find out, I've been waiting in the waiting room for an extra half an hour, and I say, Hey, you're running behind.
I hope your day's like that must be stressful for you. I like, I hope it's not too bad. I mean, the look in their eyes, like W you would even think about my day when you're the patient coming in or asking them about their family. I know that we're on a time schedule, but one simple question or a thank you card because they took extra care to order you tests that they weren't sure you needed, but decided yet you asked for them.
I'll do them. So I just feel passionate about spreading the word that there are things that you can do to help yourself at the doctor's office, and that sounds, if you're gonna send a thank you card, you better really be thankful. Like I'm not a proponent of manipulation in, in fact, that's a trigger for me, any kind of manipul.
But if you think or you find yourself coming home and saying, wow, yeah, like had a really good appointment. They listened and like asked good questions, well tell them that. Thank them for it. So I've actually written, yeah, a manuscript called, as you mentioned, help the doctor help you with tips. And I've enrolled in someone's stories from my life that kind of either reinforce the tip or, or show that, oh, I got that wrong.
I'll never forget the time I walked into the office and they had just started charging for parking in the parking lot. They had never charged there before. So I walked in and I saw my gp, who thankfully knew me well by this point, but I'm like, oh man, doc, like what's with the charging at of the parking lot?
And he is like, oh, you're the first one to complain about that. And I just was like, oh my word. What have I just done? Like think it through. The medical system in Canada is a free one and there is not enough resources to pay for all that needs doing. Certainly I can afford $2 in a parking lot machine to help pay for the pavement in that parking lot.
Like what am I complaining about? Is that really how I'm gonna use my time with the doctor? And it was a lesson learned. So I included that in the manuscript as a what not to do because, hey, I. I'm learning too, like I'm still learning things as I go along, but I just feel with like with all the years of experience of thousands of appointments and tests, no word of a lie that you kind of realize, oh, they actually pay attention and.
They'll squeeze you in because they know you've come prepared and you're, you're not gonna be late and you're gonna appreciate the time that they give. It makes a difference. So, yeah, it's kind of been a, a slow. Well, I've been thinking about writing this book for a long time, but just recently decided now is the time.
As I'm hearing more and more people either complain about their experiences and I've had some people say, it sounds like you're blaming the patient for not getting good care. Absolutely not. That is not what I'm saying. What I'm saying is there are two humans sitting in that office. And so we need to see each other as humans and treat each other as humans and not as a white coat and a number.
And that goes a long way. So no, no excuses for bad care, but certainly because they're human, they're just going to think differently of you if you. Do these simple things that we as humans appreciate. I'll jump off my soapbox now.
[00:45:38] Andrea: No, I love your soapbox. I think it's amazing and bedazzled. And I think it's, it's a really good reminder because, and I'm gonna ask about the flip side in a second, but you know, if you want to be seen a certain way, you wanna see the world a certain way.
Right? And like you said, it's not about manipulation, it's just about how, I don't know, it's just about setting the tone.. And so when you take the time, like the last neurologist I went to that, you know, she had a student in there and you know, and I was sitting there and she was kind of sitting there before the doctor and self came in and I just, I said, Hey, what makes you interested in neurology?
What makes you interested in specifically in multiple sclerosis? Like what about your past has has gotten you into this? Or what do you find interesting? And it was that same thing, like you said, you could see like the slight surprise in her face that I like, number one, I spoke and I, and I asked her and I asked her something that wasn't like, Hey, can you tell me what to do about this?
Because I've noticed this in me. And I wasn't asking her for advice. I wasn't asking her for anything other than just interest in her as a person. And I think that changes. That really changes the tone. Absolutely.
[00:46:50] Susie: I had an appointment recently. It was for my toes, and there was also a student, Hmm, nurse, I guess in the room and near the end I just asked her how much longer she had left in her training.
And then I told her that she was doing an excellent job. Like I probably didn't say keep up the good work, but in whatever words I used, and I can only imagine that she's gonna be encouraged by that. So I mean, it costs me nothing to say a job well done when there's been a job well done. So, absolutely.
And I love how you put that. We, we want, how did you say it? We want to.
[00:47:30] Andrea: Yeah. If you wanna be seen as a person, you wanna see other people as a person.
[00:47:33] Susie: Right. Exactly. Yeah. I think that's, that's exactly it.
[00:47:37] Andrea: And I think, you know, one of the things that to this day floors me, and I think it has really impacted my view on, you know, on what you're saying is I had a very bad reaction to a certain drug that almost killed me and.
I, I remember I was sitting there and I was actually alone in the room and this reaction started and I made eye contact with a nurse who was like, clear on the other side of the clinic, but she saw me and I mean, and I didn't even know what was happening. I just kind of looked at her and immediately she jumped into action, like action.
She knew she ran over and they saved my life. And I saw her years later at just, you know, I was speaking, I was doing something for ms, and she was there and she walked up and she said, I don't know if you remember me, I was your nurse. And I go, oh my gosh, Gina, of course I remember you, you saved my life.
And the look on her face, like you could tell she was so surprised. And she told me, she goes, look, we never know if people know that or remember us. Know that it happened and I didn't know if you knew that it happened, and just that it makes me tear up every time I think about it cuz I'm like, you saved somebody's life.
And then go on. Not even knowing if that person is. You know how they're doing, if they are grateful or like you just don't even know. It's, it's like, I guess just part of that job and, you know, that happened when I was super young and so I didn't realize like, oh, I should have found her and talked to her and that, that wasn't in my, my understanding of kind of that.
But it's that talking to her years later and realizing that doctors don't know that, you know, we think that they automatically know these things cuz they're saving lives and they're doing amazing things, but they don't necessarily. That like, Hey, I'm grateful for you for saving my life. I know I see you and the amazing things that you do.
Yeah. That
[00:49:35] Susie: you remembered her after that many years. Imagine how that made her feel. Absolutely. Mm-hmm.
[00:49:41] Andrea: Yeah. And just knowing that they don't get that. So I, I love Yeah, that you say that in there because it's such an important thing. I do wanna cover the flip side. Because there are times where we are a number and we feel like a number, and sometimes you don't have that relationship.
Right? Sometimes you're seeing a different doctor every single time. Yes. Yes. So how does somebody help themselves become more than a number in that situation?
[00:50:07] Susie: I mean, if it's a one-time deal, I think it's a bit harder, but I suppose. You want the best care in that appointment, but if you're not gonna be seeing them going forward, then you're not losing anything if you're not building a strong relationship in that one appointment.
But I do think that, first of all, I think we should frame our thoughts about what's going on with us as questions. So for example, You go in your first appointment because you've got these symptoms that are weird and you looked up online that they look like they're ms. And you go in there to a neurologist and you say, Hey Doc, I'm pretty sure I have ms.
Like what are we gonna do about this? I can guarantee you that it will go differently than if you walk in and you say like, Hey, these are my symptoms. I've been doing some research. What do you think? Like, could it be ms? Like should we be testing for. And I just find the framing things as questions always gets heard a little differently by the doctor than if we're telling them their job.
I think that doctors are kind of known for, have a reputation for like not liking being told how to do their job, but I think that also is human nature. It's just that we're not put in that position very often. I, I think that right away, again, it's the setting that tone not coming in as the expert.
You're there to get their help, but you wanna become a team, so, Whatever helps you problem solve that together. I think going in there with a list of your symptoms, a list of how, what your pain feels like. Does it come and go? Is it constant? Is it sharp? Is it dull? Does anything make it better or worse?
They're gonna ask you those questions anyways. Pre-think about them. And you know what? When you go in prepared, And they ask you, and you can either put a list in front of them or just rhyme off the things concisely, then they appreciate that because you're prepared. It saves them time and hey, it gives more time in the appointment to try to actually figure out the problem.
I carry a document that has all of my medications, highlights of my medical history that might be relevant. And my GPS information on the bottom of it. I have that in my handbag so that any new appointment I go to, they say, okay, what medication are you on? I slide it in front of them and they're always like thrilled.
Some of them ask if they can keep it. Yep, absolutely. I'll print off another one when I get home. It's not a big deal. So there are things like that I think that can make that moment in time go more smooth. They will appreciate you and it does bridge the gap, even if it's just a one short appointment and you never know when you might have to see them again.
They will remember that stuff. I know that they do because I've had doctors tell me that they do. So I think that that's how we can help ourselves.
[00:53:04] Andrea: I think that's amazing perspective, and I think amazing advice and tips that we can, no matter what, either we're seeing doctors that are different all the time or seeing the same one all the time.
I think those are really good things that can help us not only help the situation, but help ourselves feel better, because I think we're treating ourselves as a patient and not a number, and I think that's super important as. Susie, I could talk to you for hours. This is amazing. We didn't even talk about Carlos as much as I wanted to talk about Carlos, but so all of your information is gonna be in the show notes, all of your resources, but for people who don't go there really quickly, how can people get in touch with you?
[00:53:48] Susie: So I'm most active on Instagram, and if you're interested in all things, chronic illness tips, this kind of thing, you could find me. Medical Miss underscore stress, so that's M I S s underscore stress. And my name that will come up is Susie Schwartz. Susie Schwartz, expert patient. If you're interested in my music, then you can go to Instagram and it's Suzy Do Schwartz.
And Susie is spelled with an S, so s u s i e. There you can find songs. There's a link that will take you to both my artist profiles because they have. I have Susie Bird, which is any music that I write that I sing, and then OI is the side where I have a lot of instrumentals. And then there's a few songs that have, I've written for other people's voices on there.
And my website, les health, you can find me as well. So
[00:54:42] Andrea: Amazing. Well, thank you so much for coming and sharing stories and tips and all sorts of things. I know everybody can resonate and is gonna walk away with a lot of knowledge going forward.
[00:54:55] Susie: Aw. Well, thank you. It's been a pleasure. For sure.
[00:54:58] Andrea: If you like the show, don't be shy. Please give us a five star rating and review. Follow us on Apple Podcast, Amazon music, or wherever you're listening right now to see complete show notes and resources mentioned in this episode. Visit Andrea Hansen Thank you for joining me and until next time,
[00:55:17] Susie: take care.

About Live Your Life, Not Your Diagnosis

Live Your Life, Not Your Diagnosis podcast

Hear inspiring discussions with people living with chronic illness. These people went after their passions and big goals -even when everyone told them they couldn’t. Listen to stories of resilience and gratitude in the face of uncertainty.

I’m your host, Andrea W. Hanson, Author, Motivational Speaker, and Autoimmune Rebel living with multiple sclerosis. You’ll not only fall in love with these guests, but you’ll soak up positive mindset tips and ideas to find your own unique path to success.

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