Ep: 002 - Living with Hemophilia
Do you pad the world or pad the child?
Shaun Bernstein - Bio
Shaun Bernstein is a journalist turned lawyer turned content writer. He is the founder and Chief Storyteller of The Write Stuff Agency, where he's proven that when you found your own company you can make up your own job title.
His work includes writing websites, blogs, articles, and other assorted publications for clients across a wide range of industries.
A lifelong hemophiliac and former employment lawyer, Shaun has a passion for supporting those with invisible illnesses, whether through patient advocacy or policy change.
When he's not busy writing or bleeding, he and his wife play an inordinate amount of trivia in and around Durham Region, Ontario.
Shaun’s contact information: Website | LinkedIn
Summary
In this conversation, Tim and Shaun Bernstein discuss their unique connection as writer and ghostwriter. They explore Shaun's journey as a storyteller, from journalism to law to pursuing his passion for writing. Shaun shares his experience living with hemophilia and the challenges he faced growing up. They also discuss the importance of disclosure in the workplace and the need for compassion and support. In this conversation, Shaun Bernstein shares his experiences living with hemophilia and the impact it has had on his career choices and daily life. He emphasizes the importance of support and accommodations, both in the workplace and personal relationships. Shaun also discusses the need to remove the stigma surrounding invisible conditions and encourages individuals to take control of their own narratives. He offers advice for those who are afraid to share their conditions and highlights the power of kindness and compassion in creating a more inclusive world.
Takeaways
The power of online connections and the global reach of the internet
The importance of pursuing passion and building a career around it
The challenges and experiences of living with an invisible condition
The choice to disclose personal health information in the workplace Support and accommodations are crucial for individuals living with invisible conditions.
Career choices may be influenced by the need for accommodations and limitations imposed by the condition.
Removing the stigma surrounding invisible conditions requires open and honest conversations.
Taking control of the narrative allows individuals to define their own experiences and challenge misconceptions.
Kindness and compassion in the workplace can greatly impact the well-being of individuals with invisible conditions.
Transcript
Tim Reitsma:
I'm excited to have you on the show, Shaun. First off, because you've been me,
Shaun Bernstein:
Hehehe, yeah.
Tim Reitsma:
which is odd to say, but it's kind of true, isn't it?
Shaun Bernstein:
It's very true. Do you want me to give a little bit of the backstory?
Shaun Bernstein:
So my business is content writing. And what that means is I'm really a ghost writer and I wind up throwing my voice a whole lot. And as it so happens, Tim Reitsma's old company was a client of mine. And so I think the first piece was published under my name and then all subsequent pieces came under Tim Reitsma. And I have been with everybody. So I don't really think too much about it. There's no ego in what I do. But fast forward probably a year or two later when I'm on LinkedIn came across a post of yours and about your Then recent surgery and I'm looking going why does Tim Reitsma's name sound familiar and I couldn't place it It had been a while since I've worked with them Couldn't place it until I clicked on your profile went. Oh my god. Not only do I feel like I know Tim Reitsma I have been Tim Reitsma so I've put words in your mouth and I hope they were good ones
Tim Reitsma:
Yeah, it's not every day. And I don't know if it'll ever happen again, where I get a LinkedIn message saying, hey Tim Reitsma, just so you know, I've been you. I like your post, let's connect. So when I read that…
Shaun Bernstein:
Matrix-y, I know.
Tim Reitsma:
oh, it was, I read it late at night and I looked over at my wife and said, okay, this is so strange. And so I went digging and I... couldn't figure out the connection until we got on a call and then it just made so much sense. And thank you so much for making me sound brilliant. You are a brilliant guy.
Shaun Bernstein:
My pleasure.
Tim Reitsma:
Your mind is brilliant. You're such a gifted writer and you just, yeah. I went through the contents that you shared about which ones you've created. And, you know, it's so fun too. when I was at the publication to just dream up content that we wanted to produce. And my editor at the Time Reitsma would then go and find writers and you were one of them. And so brilliant, I love that story.
Shaun Bernstein:
Well, we should add that he's all the way in Europe and you and I are both in Canada, but it shows you just the power of that sort of global world and what we can do online. That, you
Tim Reitsma:
Yeah.
Shaun Bernstein:
Now, we were connected as two Canadians through someone who is completely off in another part of the world.
Tim Reitsma:
Yeah, and then the LinkedIn algorithm somehow fed you a post, my vulnerable share of surgery and, and as I live with Crohn's and you reached out and said, Hey, you know, I live with something that's invisible. Um, let's connect. And here we are again, I threw out this, this post on, Hey, I'm thinking about doing a podcast. I want to tell stories for people who embrace. their whole selves and to share. And you were one of the first to reach out and here we are, we're recording.
Shaun Bernstein:
That's awesome. I'm so happy to be here, truly.
Tim Reitsma:
Yeah, and I think that's a good segue into you. So your content writer, your background is unique. I love it. So why don't you, before I, I don't wanna put words in your mouth. Why don't you share?
Shaun Bernstein:
Yeah, sure. Happy to kind of, you know, walk through the quick version of the journey. So I'm a storyteller and that's my job title, which is the fun of what I get to make up. But I've been doing it since I was a little kid and I was, you know, five years old writing storybooks, complete with things about the author and sketching, you know, images of myself for a fake dust jacket. Like that's how far back. This is truly in my blood. We've been talking for over 30 years. And I, you know, then decided, okay, maybe journalism is for me. So I was, you know, editing the elementary school newspaper and the high school newspaper. I was just back at my old high school this week and got to see the old high school newspaper office, which is much nicer today than it was 20 years ago. So they've spruced up the joint. I went off journalism school to start with. I unfortunately took ill, the whole separate incident, but I took ill at that point. I didn't get to finish that degree. So I... I got into undergrad in English. I went back into journalism school and I did a postgraduate degree in journalism that I loved. Loved every second of it. We can talk more about that. And interviewing people and radio really is my passion. So podcasting is kind of a fun way to play that game. Different way of doing
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
business. And then there were a whole lot of jobs in the media. So I sold my soul and went to law school. I went to University of Windsor, Faculty of Law in Ontario. When I graduated, I had an articling position, which is sort of that year of clerkship that you need before you are called to the bar as a lawyer. I was called to the bar in Ontario in 2016. I practiced employment law for a little bit. I did a little bit left. It was not a great experience. I said, okay, this is not for me. I didn't even know if it would be for me when I got in. I had left, I wanted to go do other things, I worked in marketing roles, and I went up getting called back in by a firm that I had kind of always wanted to join up with. So I'm glad they called me. I did another year of practice with them, and that year was a great learning experience because it taught me that I absolutely do not want to be a lawyer, and that I never want to touch another legal file again as long as I live. So I left, and you know, we can talk about the invisible illness made visible there, because that was really mental health. rearing its fairly ugly head. And I didn't know what the heck I was going to do next. And I am lucky to be married to a woman much smarter than I am, who kind of elbowed me in the ribs and said, you're a writer, go and write. So I had written, previously I had my own blog that was meant for a broad audience that won a couple of national blog awards, and I had written for firms that I was with and some. other private clients, even going back to 10 years prior, pre-journalism, or after journalism school, forgive me. And I was not sure where the road would take me, but I, hudnishing, I put up the world's worst website in one post and said, hey, I'm here, I'm happy to help. And suddenly, people knew that I could write, so the barn doors started to... open up slowly and then kind of burst open. And now it's almost four years later, which is surreal. And I am running a full-time digital marketing agency of one.
Tim Reitsma:
Wow. What a journey
Shaun Bernstein:
It's been wild.
Tim Reitsma:
journalism, law, employment law, and then that aha moment of this is such a gift and I don't want it. And, uh, and then, and then pivoting back into your passion. And I think there's a whole, whole lesson that we can learn just about pursuing passion and, and paying attention to the cues in our life, I don't know if this is what I want to do. So do I want to be miserable for the next 10, 15, 20 years? Or. How can I build something where I am able to put food on the table and shelter overhead and then do something that I'm passionate about?
Shaun Bernstein:
Well, that's it. And I kind of had always had the misconception, you know, and I think the reason why I avoided trying to write professionally is I had this limiting belief that writers don't make a living. You know, you have this image and I joke of, you know, the writer, you know, traveling off to Paris and sitting, you know, starving on the left bank of the Seine with a beret and a notebook just, you know, staring into the water, pondering life. That was my sort of romanticized image of what a professional writer looked like. And that's not true at all. And I'm... I'm grateful for some of the folks that kind of got me out of that mentality. For everybody who's making $4,000 a year writing, there are other writers making $4 and $40 million. And
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
we're all using the same words, the same alphabet, at least in the English language.
Tim Reitsma:
Yeah.
Shaun Bernstein:
And so what are they doing differently? There's obviously a way to, and not that I'm making $4 million, don't get me wrong, but there's obviously a way to make a living doing this
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
if you do things that support making a living, being creative.
Tim Reitsma:
Yeah, absolutely. And, you know, you'd mentioned an invisible condition while you were in journalism school and, and, you know, we connected, you know, we not only bonded over content and, and the strange persona of Tim Reitsma, but also over living with an invisible condition, but we've chosen to make it visible to the world
Shaun Bernstein:
Mm-hmm.
Tim Reitsma:
and Why don't you walk, walk us through even just that journey of making that, making that leap into the visible, but also what do you live with?
Shaun Bernstein:
Yeah, I'm happy. I live with a couple of things that I'm happy to chat about gladly. So, you know, the first identifier, and I think the blanket one that kind of controls all is I'm a severe hemophiliac, which for those not in the know, look up the royal family, which just means that blood does not clot. And so, if you do injure yourself or if you overextend, you know, generally as humans we sort of microbleed every day internally. And we have the mechanisms to clot. It sort of falls like dominoes in the sequence of clotting factors that can help us form a clot. But if you're missing a domino, suddenly
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
the rest of the sequence doesn't fall and you wind up in some trouble. So it is well controlled, you know, and people unfortunately knew it from the 80s and tainted blood when it was a fairly ugly situation. I am beyond fortunate as I knock on my desk to have escaped the worst of that. And I am relatively healthy, all things considered, which is an absolute blessing. I have my issues for sure, and issues that are becoming more and more visible, but on the whole, I'm very grateful. But that meant a childhood of really strategic decisions about how I lived my life. I had amazing parents who were absolutely wonderful. It goes back to, you know, at the time when I was a baby and a toddler and they're trying to figure out how to navigate all of this, there were really two schools of thought, which were, and this is sort of goes into the rest of my philosophy, it was either pad the child or pad the world. And so generally, you know, these kids obviously are not super careful and they bruise easily. So you'd see children in almost like foam suits, like a cartoon, you know, they're wearing sort of... you know, foam rollers and helmets and doing whatever they can to, you know, parents to keep them from impact if kids fall down and go boom. And in my case, my parents said, no, pad the world, let them explore. And so, you know, my parents are still in the same house I grew up in and there's still markings of duct tape from where they put, you know, foam barriers on
Tim Reitsma:
Wow.
Shaun Bernstein:
the fireplace ledge and any other kind of sharp corners. But it lets me live with some degree of normalcy. and let me go out and explore the world and try new things. And they always encouraged me. You know, it was never really about the limitations. It was about going out and trying new things and, you know, staying active and seeing the world. And I, it's ironic because I wonder what my life would have been without it. I'm built like a football player. I might've played football, but I'm also not athletic, uncoordinated, and don't have a deep love of sports. For me, it was never, but you know, there are kids who grew up who are Sports addicts with this who you know either will defy doctors and do it anyway Or they grew up bemoaning what they couldn't do that was never me. I don't think that's my personality But it's an interesting kind of worldview So that you know obviously runs through childhood. I spent you know my Earliest years at my doctor's office through time of week getting my injections until my mother started doing them from home I was sort of you know I'm a mama's boy anyway because my mom is wonderful, and I'm very lucky but I was also tethered to her because she did my injection, so I was about 15.
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
I receive IV medication that has now gone down in frequency, but it used to be every other day.
Tim Reitsma:
Wow.
Shaun Bernstein:
So it meant that I was never far, literally from home, whether I was there or took her with me.
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
So that meant she was the chaperone on school trips and overnights, and one night was okay, two nights I had to kind of give some thought. Or if I then got into my high school youth group where we started going away for longer. Okay, how am I going to do this? What resources are available? Who can help me out? Where's the nearest hospital? Etc, etc. And the older that I've gotten management has changed a little bit. I'm a little bit more Exploratory, but I'm running my mouth at this point. So
Tim Reitsma:
Well, what, what a. I just, I'm just thankful that you're sharing that insight because I never thought of it from a pad, the world or pad, the child perspective.
Shaun Bernstein:
Mm-hmm.
Tim Reitsma:
Um, you know, I'm thinking back to people I know and, and youth that I know are still in my life who, who kind of live in that world of, okay, we're gonna, we're gonna pad the child a bit, but then the child grows up and it's like, well, no, we can't just continue to pad the child. The child needs to live. The child needs to go and play sports. I think of a nephew of mine whose type one diabetes. and he loves basketball, but it throws his sugar so far off that the next day after a game, he's a mess. But yet, his parents say, go for it. Be a kid. And we'll deal with it the next day. And he just loves that. I mean, the alternative of that is to sit on the sidelines, but that could potentially have another effect. I'm curious as you've kind of gone through life, even entered into that workforce, how has that always been in the back of your mind or has it, has it always been there in the back of your mind as like a sense of anxiety or a sense of pressure?
Shaun Bernstein:
So yeah, in a couple ways, it certainly plays into the decisions that I make. So the first one, and the one that sort of really is defined, and I have, there's some other issues in childhood, there's some liver issues, there is some fibromyalgia there for a couple years that made just about everything painful that I've, you know, thankfully managed to combat fairly well. But there was a time in a sort of just preteen years, about 12 or so, I missed something at school. I think it was a school play that I was supposed to have like a one line in and I missed it for a hospital appointment That was suddenly beyond my control. Not one that I could have had any Say over but they decided instead of just having someone else say the one line again. It was not an intricate part. They canceled the show. Told everybody that it was my fault that it was canceled and then effectively turned me into the scapegoat to blame me for, you know Ruining everybody else's hard work and good time Awful, not the way to run things remotely. But it scared me like you can't imagine. So it left me with years of me being really hesitant to commit to any set dates or time Lines because I never knew what my health would be. I never knew if I was gonna have a spontaneous hemorrhage. I didn't know if I would be mobile or up and around or well enough. And you know, I spent a lot of years going through sort of undergrad, et cetera, being very nervous about, you know, committing to any sort of set date and time. Obviously, if things have priorities and you can do things earlier, et cetera, and you can work around, but it being somewhere at a certain time and place, terrified me. And it took a lot of years to get over that. And I have been, and I've done, you know, quite well. Even going into getting married the day of my wedding. It's like I knew that I'd be okay. And I've really managed to improve my health overall in those years. But there's always that concern of, oh boy, you know, I need to make sure that I am well enough to be here and do this. And I think that's something that a lot of folks with chronic health issues face. So, you know, especially entering into the field of law and to a field of, you know, court deadlines and client deadlines and tight deadlines and high pressure demands. It was certainly a consideration of, you know, okay, can I book a court appearance knowing that I will be mobile enough to get there, that I'll be able to drive, I'll be able to walk into a building, whether I'm on a cane or, you know, what have you, that I can get to where I need to be when I need to be there. So that was always a big consideration. I feel like there's something else that I was going to include, but that's a good starting point.
Tim Reitsma:
Well, I think it's a great starting point and something that I know I personally relate to and the anxiety that comes, um, with, having a chronic health condition, whether it's visible or invisible and setting deadlines and the anxiety around that. And it's like, okay, I've got to be somewhere. Am I actually going to be there? What's, what's going to happen? And even though that incident happened many years ago in your school, it still is. on your mind and
Shaun Bernstein:
Thanks for the interview.
Tim Reitsma:
it sticks with you. And so I think anybody who's listening is just, it's so important to control the words that we're using and saying. And it's like, well, but Shaun, you look fine. I don't understand why it got canceled. Like that is, it's harmful.
Shaun Bernstein:
It's yeah, and so I guess the other piece no for sure it is I think the other piece is really disclosure and how that's kind of changed
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
In my life over the years, you know It used to be the most undefined thing about me because I was either constantly being pulled out of school I was constantly at the doctor's I was often on, you know canes and crutches Uh, and it's jarring when you see someone one day and the next day they show up on a cane for you know, no Visible reason or they're limping and you're sort of going What's wrong? What happened? If you see anybody, you know who suddenly they're walking well one day and the next day they're dragging a leg Human nature is to inquire and kids were a mixed bag Some of them were really wonderful about it Some had a lot of dumb questions some of them used to steal my cane and run away because that's What kids do and then as I get older and I'm entering the workplace, etc You know, and I've always been on the side of and I've been employment law You know professional or where I was forgive me. So I understand the rules, et cetera, but I've always been personally on the side of disclosure. I've never had an issue with disclosing. I had, through my teens and 20s, informed employers of, hey, this is it. And as I really sort of, were able to take control of my health and it affected me less, it became more of a, this is something that's here, it's on the table. It might never come up. It might never, for example, I worked a job in the interim between finishing journalism school and going to law school and I was there for I think about 10-11 months. I think the hemophilia cost me maybe a half a day . That's less than most people who are sick Time Reitsmae. I actually that year I caught bronchitis I was out for four or five days that knocked me on my butt But in terms of you know, the bleeding it was I think I maybe missed a half a day if that so it you know as I've hit those years and then as You know you age with it still you you realize you hit the point where people don't know and there's people who you just haven't told and so they don't know and it really hasn't come up. It's not the most interesting about you at a certain point. It's not the thing you lead off a conversation with. So now, I'm on the board of directors of a major chamber of commerce. I don't know if any of them know my background or my health history. Quite honestly, the only reason it used to come up in a lot of working conversations was on my resume. I had been involved with the Patient Society, with the Hemophilia Society. So it was on my resume, which I didn't mind including. I was there as a volunteer. And it became a conversation piece by a couple of Tim Reitsmaes. People would gently ask, obviously, within the guise of the law and good HR practices. And I have no problem disclosing. But you hit the point where it's no longer your leading characteristic. And that's where things get interesting because that's navigating another new world on top of, you know. thought you'd been thrust into.
Tim Reitsma:
Yeah, it's a, there's a couple of things that come up for me in that is disclosing to an employer and you've got the employment law background. So I'd just love to touch on that a little bit because I'm reading quite a bit about disclosing and what to disclose and is it right to disclose, but also the, how it doesn't define you. It's part of you. It's. It's just something you've been, you know, you were born with, and it's kind of shaped your life, but it doesn't define you in the context of the negative side of things. Does that make sense?
Shaun Bernstein:
It does and I'm kind of happy to go on both and I'm gonna preface any disclosure talk with the fact that I'm no longer Practicing I'm not insured. None of this is legal advice
Tim Reitsma:
Absolutely.
Shaun Bernstein:
So let's put that right on the table. You know you have the HR background as well so we can kind of talk shop at a higher level But also make sure that we're you know at the same level. It's cool for your listeners So the rules of disclosure at least it should have across Canada are relatively straightforward, you know There are just human rights protections under the law for disability and protections for patient privacy, et cetera. So an employer, at least here, is not entitled to your medical records.
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
There's no situation where they would be. You do not have to disclose an illness. In most cases, you simply don't. Really, what an employer is allowed to know is how it impacts them.
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
So if I am having a joint hemorrhage, for example, and I was working at a factory, they don't need to know what joint is bleeding, what I'm using to treat it with, or what my prognosis is detailed, they don't need to know that. What they need to know is, okay, so Shaun can only stand for 15 minutes at a time, and they need the stool to sit down, and it'll be like this for a couple weeks. And there's forms that get filled out, and your doctor's part of that process, and that's where accommodations come into play. So you don't have to disclose a lot of this illness. You also cannot be discriminated against for disclosing certain things. So if you're disclosing whether it's hemophilia, diabetes, HIV is one obviously that comes up, employers cannot make discriminatory decisions based on disability. Now, the law is one thing. Does it happen? Of course it does. If everybody followed the law, there'd be no need for lawyers. So, does it? Does it happen? For sure. Is there, you know, improper things that go on? For sure. Is there horrible injustice? For sure. So you're always sort of running the risk of, okay, well, what does the law say? But what is this actually practically going to mean? If you are working for a real piece of, you know, let's say human garbage and you disclose something and you're terminated or penalized because of it, that's absolutely wrong. Doesn't make it right. now puts you on the defensive of having to fight to get that back and it's another piece of stress and headache for you. So never to say don't disclose, but know that even though the law is on your side, they'll protect you. There's certainly challenges that people face. So
Tim Reitsma:
There are.
Shaun Bernstein:
That was half of it. And then we can go to the other half in a second if you like. You have to remind me what it was
Tim Reitsma:
I think what comes up with at least people that I've been talking with is, you know, I live with something and it may affect my work. It does affect life, but I'm fearful. I don't want to share. And I think it's important to know that, well, you have a right. It's your right to either share or not share. If it is impacting your job, then you have a choice. You can either leave that job because it's impacting it or, you know, run the risk of performance problems. But at that point, again, I would encourage, I'm, I'm an advocate. I'm a pretty transparent guy. If you've got the trust and, and, uh, support from your organization, then, you know, choose what you want to disclose. Because I would say more often than not, people are compassionate, but there are, human garbage out there where it's like, I don't care. You just get your job done. And so, I think it's important. I know you've chosen to disclose and, and very publicly, here you are sharing on a podcast and, and same with me. And, and, uh, but you know, just to honor those who don't feel that comfort to disclose, I want to say that that's okay too.
Shaun Bernstein:
You're still with you and your battle is your battle and you know you wage it how you need to wage it. That's completely okay. But that's, you're right, I think more than less people are compassionate, they're kind, they're understanding. They might have questions. They might have silly questions. I mean when I was in school there used to be a video that was put out for patients that my mother would show teachers every year. You posted about the snack box, wasn't it? Was that you? Was it.
Tim Reitsma:
yes,
Shaun Bernstein:
a manager
Tim Reitsma:
yes,
Shaun Bernstein:
sending you snacks?
Tim Reitsma:
yeah, a manager
Shaun Bernstein:
Yeah.
Tim Reitsma:
sent me, you know, a bunch of, he didn't understand what it was, uh, what Crohn's
Shaun Bernstein:
So he did his own research.
Tim Reitsma:
and he's, so he did research and he realized stress was a big component. And then he thought about my wife and my kids and the stress on them. So we came back from the hospital to boxes and boxes of groceries because he knows how stressful it is to maintain a household. And, you know, my wife made a comment on that post of that day. She was stressed. point of tears about how, how is she going to find Tim Reitsmae to go get groceries and feed the kids? Cause there was not a single banana left. There were no apples left in the house. And, here we walk home or we show up at our house to boxes of delivered groceries and you know, I chose to disclose while I had to, I was sitting in a hospital bed and phoned them up on a Monday and said, I'm not going to be in the office today. So, you know, I had no choice, but to share and I shared quite vulnerably and, and he. Thanks for that.
Shaun Bernstein:
That's something that's so amazing. You're not gonna have everyone that takes the initiative to do their own homework, but, and everyone's needs are different. And no two, just because someone has the same condition, no two needs will look the same. So some people will need, you know, physical assistance, whether it's groceries or accommodations or what have you. Some people just need support, whether it's, you know,
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
an ear to listen or... of you know just an understanding shoulder and some folks don't need anything at all and that's okay too and they're you know they're sharing just as another fact about themselves just like i am six feet tall and have red hair and a beard and glasses it's just part of who i am
Tim Reitsma:
And it's just part of who you are.
Shaun Bernstein:
i'm not actually six feet i'm shrinking a little but you know
Tim Reitsma:
Okay, I was gonna say like, oh interesting you're six feet. Okay, I didn't know that about you
Shaun Bernstein:
I say I'm six feet. It's probably the biggest lie I've taught myself.
Tim Reitsma:
Yeah, you are 60. Yep. Just got to sit up when we sit in these chairs for so long, it's, uh, we
Shaun Bernstein:
Exactly.
Tim Reitsma:
feel compressed. And, and, you know, again, you kind of alluded to it just again, and you did earlier on is the defining, it's just another characteristic of who I am.
Shaun Bernstein:
Mm-hmm.
Tim Reitsma:
And when it's thinking of the work world, when did that transition happen? Or maybe it happened earlier on in life. Um, it's like, okay, this is. This isn't this, this is just who I am.
Shaun Bernstein:
So I think what it's done has really impacted career choices. I had a fairly, you know, interesting incident. The kind of job stress that I've had with hemophilia. I was a tour guide. I used to be, we have double-decker
Tim Reitsma:
Okay.
Shaun Bernstein:
buses around downtown Toronto. I was on those kinds of hop-on hop-off tours. And it was a great summer job in my undergrad. I loved it. But I had a problem with my ankle. And they were accommodating to a point.
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
they kind of stopped accommodating me and I wound up having to basically do way too much physical work standing when I shouldn't have been standing when I should have been resting. And almost 15 years later my ankle is never the same because of it. I'm arthritic because of that role. And if you know thankfully mild as anything I mean there's certainly far greater workplace injuries out there but it is a lasting you know impression that stays with me and really taught me about the importance of accommodations and also job choices. You know,
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
a lot of the hemophiliacs that I know, a lot of us funny enough are lawyers or have other sort of desk jobs partly out of necessity. You know, we are aware of the fact that, well, we can talk about having no limitations, there certainly are some. A lot of us, you know, are in different physical states. And so we pick careers that won't, you know, accelerate things or make things worse and a lot of that requires you know desk work. So even as a journalist going back I loved it. I loved radio. I loved the newsroom but I wasn't about to go be a work correspondent. You know that just was not going to be in the cards for me. Not that it couldn't have somehow been arranged but I you know that was never my path and that's okay. So it's a matter of sort of making really pragmatic choices. Now As I'm more stable but my joints are really starting to suffer from age, I'm grateful to have a rule where I am at my desk more often than not. I have to fight to stay active. That's my own challenge and I try. But I also know that I have a very comfortable chair on days where it's impacted my home purchase of a bungalow. Same thing, less stairs. That I have a soft spot to land when I need it.
Tim Reitsma:
Yeah, and I think...
Shaun Bernstein:
Oh, you're on mute. There we go.
Tim Reitsma:
And I love that you share that where it's, you know, it's part of who you are and you know the limits and you don't let those limits slow you down. How do I shift? Okay. I know I'm not going to be a war correspondent. Um, I know I'm not going to be a standup tour guide. But you've adjusted your and, and, and weaved your life into a, into a way that hate supports you and you can, um, live your best life and, uh, and through that. So I really appreciate you sharing that. Cause I think, at least for me, when I was diagnosed with Crohn's, I didn't understand it as early in my teens, nobody understood it. So we just kind of ignored it. And when you ignore something for so long, it, it, uh, it just, it comes back. It just doesn't go away. And that's a story for another day, but, you know, embrace it and, and learn how it becomes part of your narrative, not to define, um, who you are and who you become. And I'm really curious that you're married.
Shaun Bernstein:
I am.
Tim Reitsma:
You obviously disclosed to your partner, Hey, I'm a hemophiliac. Do you know what you're getting yourself into? Um, I would just love to hear a little bit more about her as a caregiver and somebody who supported you. I mean, she supported you to go like, quit law, it's causing
Shaun Bernstein:
She supports
Tim Reitsma:
you too much stress
Shaun Bernstein:
me in everything.
Tim Reitsma:
too. So yeah, I'd just love to have a little bit of insight into that.
Shaun Bernstein:
It's interesting, I think this is kind of universal with chronic illness in finding a partner. Because you do need someone who is A, understanding, B, a little bit compassionate, and C, somebody who will be willing to slog it out for the long term. You know that not every day will be pretty. And you need somebody who's gonna be okay with that and okay with the challenges that brings. So we've had an interest, we are made for each other, but we've had some interesting Tim Reitsmaes. For example, I have an accessible parking permit for my car. I used to hide it. I only ever use it if I am physically in need, but I used to hide it regularly because, you know, I was in my 20s and I was dating and you don't want, you know, a girl's first impression to be, oh, why does he have, you know, a permit that's usually just associated with old people or, you know, wheelchair users. And finally, it took me a while, you know, with... my wife and I realized okay you know forget this and she knew like yeah I just keep it down permanent display and it's always on permanent display and it's attached to my visor and that's that's fine ironically my wife has a crippling fear of needles and I do IV medication so cue the odd couple theme
Tim Reitsma:
Thanks for watching!
Shaun Bernstein:
We were a pretty funny fit in that regard so you know My parents always have the belief of, you know, finding someone who can help you with injections if you ever can't do it or this or that. Yeah, she's not helping with injections. She leaves the room. She's gotten much, much better over the years. She still, you know, won't go for her own blood work, but she's happy to support mine. And she is incredibly supportive. We had to kind of learn a little bit early on, you know, how to navigate each other, especially with this. You know, she... For example, we saw him last night. She's got a friend who has a spinal cord injury and is a wheelchair user. And his approach to life, he's a Paralympian candidate, really strong, tough guy. But his approach to life is that I'll do it myself. He's
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
tough, he navigates the world and does a darn good job of it. And so do I, but I need a little TLC someTim Reitsmas. I need a little bit more hand holding. I need someone to kind of you know, help me up when I can't physically get up literally and so, you know, it was sort of navigating the differences there, but we learned quickly and she's been wonderful and supportive and you know is Probably more aware of my limitations than I am And is more cognizant of them. So it really came up, you know as an off-topic as we were house hunting Part of the reason why we're making a move is because there's just too many stairs in this house and I cannot Physically do the stairs like I used to I'm I'm having some real trouble That meant that we're looking at bungalows and ranchers, you know things that are few stairs are really single level Whereas you know, I might like the look of a back split or a side split and she'd say no That's too many stairs for you and you know where I can do three or four or five stairs most days and I could do it easily and I I'm active and I live on a peloton and I'm still up and around. She also knows the days where I cannot do three, four, or five stairs or I am going down the flight of stairs on my butt to give you a fun visual.
Tim Reitsma:
Thanks for watching!
Shaun Bernstein:
And you know that I don't want to be captive to a house that I cannot use, you know,
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
that we can't age in. So she's very astute. She's incredibly bright. That's, you know, just a fun characteristic, but she really... has a lot of empathy and understanding for me and my world and what that comes with.
Tim Reitsma:
I love the shout out to you, to your partner. And it's just so awesome to hear just that support and that care, because that's so important to our, you know, living with something, living with a condition and illness disability and that support system that's around us. And, you know, a question that I've been asking all the guests on the show is, and our purpose with InvisibleCondition.com is to remove the stigma. not reduce the stigma, I would love for us to remove the stigma that surrounds invisible conditions, specifically things that just aren't visible to create a more inclusive world. When you hear that, what comes to mind? How are we going to do this?
Shaun Bernstein:
I think talking, talking about illness as a part of life and as reality. I also have dealt with, we don't have to get into it in detail, but I've dealt with mental health issues that I've also been transparent about. It's part of what pushed me out of my legal career. And that's something where a lot of folks will opt to sort of run and hide because it is usually so invisible. In my case, it was really quite visible because it really impacted who I was as well as the career changes. And I chose to, you know, instead be loud and vocal about it versus hiding in those shadows. I think that's the gut instinct that a lot of us make. I just spoke with a friend before we were this recording who unfortunately went through a very difficult miscarriage she just told me. And I didn't know we're not super close friends, but she said, you know, I've been trying to talk about it. I said, you know, Sefma Frankadon says, supporting. That should never be a point of shame, but yet is for so many people. We, you know, if we think about FDR, you know, in the thirties in his wheelchair and how he had an agreement with the press not to shoot him with the wheelchair, you know, show him with the leg braces, because disability was seen as a sign of weakness. An invisible illness was, you know, this weakness that was a character flaw. It's not at all... We have grown out of that largely, but still not enough. We need to take charge of the narrative as those with lived experience. We need to reshape it, it's on us. You know, people don't always understand on their own and that's okay. I think we can help them get there by having that voice and saying, this is part of who I am. It either does not define me or it has helped shape me but it does not limit the extent of what I can do. whatever that means for you, but having that control of the narrative, because if you don't take it yourself, no one's going to give it to you.
Tim Reitsma:
Hmm. What a powerful statement. If we don't take it yourself, nobody's going to give it to you. And so take control of that narrative. That's, uh, that's something I'm going to go and reflect on. Um, cause I think that's a powerful message. If we let somebody else try to define our narrative by saying, you, Shaun, you look healthy enough, I don't believe you. Or I, um, I don't understand and I don't care to understand. having that voice, sharing the voice. You've been very vocal about being a hemophiliac and you've alluded to your mental health struggles and that's such an inspiration. And so, but often I've had so many people reaching out and I'm guessing you've had people reach out to you through your vulnerability as like, I'm just too afraid. I'm afraid to share. What advice do you have or what insights do you have for somebody who is afraid to share?
Shaun Bernstein:
I think it's fear of the unknown. And I think it's sort of fear of, you know, what are the consequences? And you don't always know what those consequences are going to look like and how people will react. And someTim Reitsmas is a shame. And someTim Reitsmas it's just, you know, this desire for privacy of, you know, where we associate, you know, a certain illness with a certain direction. You know, you look at mine, and I've certainly faced some discrimination and very mild, but from it. where the initial image a lot of people had was the 80s of HIV. And there was a commercial from just before I was born of the baby crying. And I don't know if you remember this. This baby's bleeding on the inside, I think, was the narrative. And
Tim Reitsma:
Oh,
Shaun Bernstein:
it aired
Tim Reitsma:
I don't
Shaun Bernstein:
really
Tim Reitsma:
remember.
Shaun Bernstein:
broadly.
Tim Reitsma:
Wow.
Shaun Bernstein:
Oh, that was your young guy like me. But
Tim Reitsma:
Yeah.
Shaun Bernstein:
That was kind of the narrative that most people had about hemophilia.
Tim Reitsma:
Yeah.
Shaun Bernstein:
So, you know,
Tim Reitsma:
Wow.
Shaun Bernstein:
When you share, I think you're nervous of what everyone else's impressions will be. And thus, going back to our point, I think it's partly your role as an advocate to redefine those impressions. And you know, let you shape the narrative versus letting someone else shape it for you and having to either fight your way out of their box or, you know, instead of staying on the defensive, you can really have control over that situation.
Tim Reitsma:
And you're absolutely right, control over it. I was reading an article by a very prominent author. someone in the media here in Canada who recently disclosed that she was battling cancer. And
Shaun Bernstein:
Hmm.
Tim Reitsma:
she didn't, she didn't disclose this while she was, you know, uh, during her career and single mom, because she wanted to focus on her family, her health and her job and, and keep some things separate. And I never thought of that from that perspective. And I, and I completely respect that. It's not off, Hey, if you have something you need to share today, get out there and shout. Um, But I love what she said about controlling the narrative. She wanted to control that narrative. And so because she's a very public person, this is how she was able to control it. And now's the right time. Now's the time that she needs to share, hey, this is what I struggled with and this is what I'm living with. And so, you know, for those who are listening and going, well, is today the right day? You'll know when it's the right day.
Shaun Bernstein:
You'll know and it's, I saw that news story as well. She certainly had faced her own issues.
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
And if we're speaking about the same person, she'd lost her husband just previously to cancer. You don't know what, as soon as you share, and you've probably seen this with your diagnosis, you open yourself up to whatever feedback you're going to get, positive, negative, and everything in between. So you'll get a lot of weird questions, get a lot of weird recommendations for home cures. A lot most people are really well intentioned in trying their best, you know, so as an on-air personality you'd be drowning in cards and letters and homemade potions and such and You know some people that's really supportive for them and that's great and for others That's their idea of a nightmare and you know They don't want any sort of public spectacle and that that that's fair to that because I know personality and other things
Tim Reitsma:
Absolutely. There's no, there's no wrong way or wrong Tim Reitsmae. You know, you'll know, like, like we both said, you'll know when it's the right time to share. And yeah, by putting it out there, it's very vulnerable. You'll get messages from people that say you need to do X and somebody says you need to do Y, which contradict each other. And it's usually out of a place of care. Hey, I want to help. We want to fix this. So here's something to try. And, um, you know, that's a whole other conversation and Shaun, as, you know, we kind of wrap up our conversation. I'm. I'm just really inspired by your passion to share how you articulate your story so well. And I can see your journalism background is playing into that story. I love it. You know, when you think about a world without stigma, it surrounds the invisible. What encouragement do you wanna leave for people, to our listeners, as maybe they're a caregiver, as you give your shout to your partner, or somebody who's living with something, or you're in the workplace, you're maybe in HR, or a manager who knows something's going on with somebody. Where do you wanna take this? What encouragement do you wanna leave?
Shaun Bernstein:
Uh, you know for those going through it themselves, I'd say the sky really is the limit and the limits that you The limits that exist on you are the ones that you're gonna place on yourself, you know So get out of your own way live to the best of your capabilities and abilities whatever that looks like your version of Healthier version of normal may not be the same as someone else's and
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
That's okay And you do so, you know, my version of wellness is not running the Boston Marathon. I think that's out I'd love to learn to tap dance. My ankles are shot to hell. I think that's out. But there's other things that I do. I love my Peloton. I love to walk when I can. I do X and Y. So just find the ways to live to your potential within whatever limitations are imposed upon you. Anything else at once that you're just imposing upon yourself. So that's number one. For the caregivers, compassion and understanding goes a long way. It's a slog. It's a slog, know what you're signing up for. You know, and you, so many stories of, you know, someone's just diagnosed and they sit with their partner. Look, if you wanna go, go. And it's awful, but I could see where those conversations happen because it's not always easy. And you wanna make sure that it's the right person. You know, for me, especially as I was searching for a partner, and I was young and I enjoyed dating and having, you know, a good time meeting new people. But when I'm searching for something long-term, it is really okay. I know this might not be as easy in 10 years or in 20 years, and I know what that future might look like. And so I need to find the right person, not for today, but for 10, 20 years down the line as well, for whatever my health may be. And I'm so unbelievably grateful to whomever that I did find that person for me who could help me through it. But it is certainly, you know, in sickness and in health is a real thing. For those in the workplace, I loved that piece about your boss setting groceries. And not everybody will do that, but instead of asking all the stupid questions that have danced around, making awkward conversation, I think there is, asking how you can help is great. And I think there are some great online resources, if you do come into information. To A, be caring, be compassionate, but also learn a little bit. Learn with some of the issues you're learning. You know, so for example, you know, what are some of the side effects of medications? I mean, you might not be able to deal with someone's treatment per se, but if they're fatigued, you can be a little understanding. If they have some brain fog from whatever treatment it is, you'll be a little understanding. Whether it shows up in a, you know, functional abilities form to get technical in a workplace form, or whether it's just something that you've noticed. Yeah, there's the saying that everyone's fighting a battle, you know, nothing about, but it's true. You just don't know with invisible illness what people are going through. And so leading in general no matter what you do with some extra kindness and compassion I think goes a long way to helping others
Tim Reitsma:
That's such a theme, uh, is kindness and compassion and, and care and then get curious and don't, don't be sending recipes for home remedies, um, that your, your, your second cousin twice removed had tried and it worked for them because it might not work. And I know that's something we jumped to, but asking questions and just even asking, how is it showing up at work? Is it affecting you? How can we best accommodate and work together? I think that the key is working together to figure it out, and it may not work in your favor as an employee, but getting, starting that conversation, starting that narrative is so, I'm just a proponent of.
Shaun Bernstein:
Well, in recognizing that everybody is different and
Tim Reitsma:
Yes.
Shaun Bernstein:
every condition is different. And even with something like IBD and Crohn's and colitis and such is that you might have two employees with Crohn's disease, both of whom were at very different stages. One might be in full remission, one might be very
Tim Reitsma:
Mm-hmm.
Shaun Bernstein:
ill and going through the worst of a flare up. So it's a whole mixed bag. Meet somebody where they're at and see what you can do to help them.
Tim Reitsma:
I love that. Shaun, you're an inspiration to me. Even before we even met, you're an inspiration to your content. And, and now I'm so glad that we've connected. And for those who might want to reach out to you, just to, to give you encouragement or also to, to just ask questions about your journey of career and writing and everything, your partner, everything, is there a best place for somebody
Shaun Bernstein:
You can reach me anytime. Yeah, so my company is called The Right Stuff Agency, W-R-I-T-E, Stuff Agency. So you can Google, we're all over that, and the right stuff.agency. My email is Shaun, S-H-A-U-N, at the right stuff.agency. I am on Facebook with that, I'm on LinkedIn at Shaun Bernstein or at The Right Stuff Agency, on Instagram at The Right Stuff Agency, I'm around, so.
Tim Reitsma:
You're everywhere.
Shaun Bernstein:
Reach out tell me, or be on the podcast, happy to chat.
Tim Reitsma:
yeah, for sure. And I'll put all the links in the show notes as well. And, and, and so again, Shaun, thank you so much for coming out.
Shaun Bernstein:
Thanks to Tim Reitsma, it was a pleasure.
Tim Reitsma:
sharing with us some encouragement. And for those who are listening, if this resonates with you, if you have questions or if you have resources that you found helpful, shoot me an email and my contact info is on the website, invisiblecondition.com or find me on LinkedIn as well. It's Tim. So. For those again who are listening, if you like what you heard, if you have suggestions, reach out. And I hope you are super encouraged today as I am. So with that, Shaun, thanks and I hope you have a good one.
Shaun Bernstein:
Thanks Tim Reitsma, take care, cheers
