Is Denial About Your Health Keeping Your Business Stuck | Diane Hinds

Before we get in today's episode, I want you to think about this. What does it mean to build a career supporting other people's entrepreneurial dreams and creative dreams while quietly carrying a condition that could end your life at any moment? This conversation is for you if you've ever felt like your health or your circumstances are holding you back from what you really want to do, or if you're the person who's always out there cheering on and helping other people succeed while silently seemingly invisibly navigating your own struggles. I'm sitting down with Deanne Hines, dynamic and highly respected PR director whose career has spanned the entertainment, literary, and classical music industries, supporting a diverse roster of domestic and international talent. She has a flair for impactful communication and a passion for elevating emerging voices, and she continues to empower independent writers with practical public relations strategies that drive results. And she herself is now a published author. But what really struck me wasn't just her career story, it was her honesty about living with sickle cell disease, about denial, survival, finding joy, and how she's built a life around her passions despite it all. There are moments in this conversation that truly stopped me in my tracks and was not how I thought this conversation was gonna go, especially about family, about choosing careers and her own viewpoint around ease over stress. And sometimes how just focusing on what brings you joy can bring you some surprising results in managing and navigating life with chronic illness. If you've ever felt like you are here to do more, but your body and your reality keeps getting in the way, or you feel like it's getting in the way, this episode is truly for you. All right, y'all stay tuned. Welcome to Business with Chronic Illness, the globally ranked podcast for women living with chronic illness who want to start and grow a business online.

I'm your host, Nikita Williams, and I went from living a normal life to all of a sudden being in constant pain with no answers, to being diagnosed with multiple chronic illnesses and trying to make a livable income. I faced the challenge of adapting traditional business advice to fit my unique circumstances with chronic illness, feeling frustrated and more burned out than I already was while managing my chronic illness, to becoming an award-winning coach with a flexible, sustainable online coaching business. I found the surprisingly simple steps to starting and growing a profitable business without compromising my health or my peace. Since then, I've helped dozens of women just like you learn how to do the same. If you're ready to create a thriving business that aligns with your lifestyle and well-being, you're in the right place. Together, we're shifting the narrative of what's possible for women with chronic illness and how we make a living. This is Business with Chronic Illness. Oh my goodness, I'm so excited about this episode. Before we get into it, tell us who you are and how you would describe yourself.

Okay, so my name is Diane. I live in London and I've just published my debut novel. And I live with a condition called sickle cell disease. I am the youngest of 6 in my family and the only one with the full-blown disease. So I say I have it for a reason. And exactly a month ago today, I celebrated my 62nd birthday.

Wow. Congratulations.

Thank you.

That's amazing. Oh my goodness. I remember when we first connected and we just hit it off on so many different levels. Your book, you have to tell us a bit about your book. You also have to tell us a little bit about your background when it comes to, because you have a, like an island background, right?

Yes. My parents are from Trinidad.

Mm.

So they grew up in Trinidad, they were neighbors. And from the age of 10, my father said he knew that he wanted to serve God.

Mm.

So he came over in the late '50s to attend theological college.

Hmm.

My eldest brother was already born, so my mum was sent ahead of him to come to the UK. And then I think my father followed about 6 months later. So, because I, as I said, my, I'm an entertainment publicist. I've been doing this for so long. I love talent. I'm excited by talent. And one of my clients was the author Anne Perry, who writes Victorian mysteries. And her books are still popular to this day. And I met her through her literary agent. And she and I used to go and have lunch or dinner or go to the cinema like every 2 months and just chat, you know, because we get on really, really well. And it was about 10 years ago, for Christmas, she gave me a red moleskin book, A5, and 2 pens. And the note said, think about it, dear Anne. Love, Meg. Kiss, kiss. So about February, when we met up for lunch, I said, look, Meg, thank you for the gift, but I don't get it. I don't know what the message relates to. And she said something along the lines of, well, you remember we were talking about you writing a book? I said, no.

You're like, when was that?

Yeah, like, why would I even think I could write when I'm working with an international and New York Times bestselling writer? It's like, why would you? You know. Anyway, so I had this— I went away and I had this idea, sentence, and I emailed it to her, and she emailed me back and said, tell me more. That was the beginning of my writing.

I love that.

Don't you love— I love, like, how people around us see things within us that we don't really recognize in ourselves, right? Like that.

Absolutely. And for me, that kind of stuff is happening again. It's really weird. But again, I'm not complaining because it's all positive, all positive stuff. So yes.

That's amazing. So you have such— when I, when I read your story and when I read a part of your bio, the thing that I was fascinated by was one, you know, we talked, you share about being an author, you talk about supporting authors and helping them be visible and seen. And then it was like, I always say it's like the whisper note in there I saw, or we were talking about how sickle cell has been a part of your life. And I, I'm always fascinated by folks who are, especially women who are building other folks up, right? Supporting them, sharing them, featuring them at the same time dealing with sickle cell. Sickle cell is not for the faint of heart.

It's—

I have a couple friends who live with it and I mean, just from the emotional side of it and then the physiological aspect of it, there's so much to it. So how have you navigated living with sickle cell and then building such a beautiful career in the lanes that you've been? Denial. I was not expecting that response. I'm sorry. Denial. Okay, tell me more. What do you mean?

Well, you know, when you're young and, you know, you have everything ahead of you, don't you? Just get on with things and you follow your peers and you do certain things with your peers, a group of peers, particularly if they are on the straight and narrow. I've never done drugs or anything like that, but you just grasp life, don't you, in your early 20s, and you see everything with rose-tinted lenses. And you know, my attitude to sickle cell was that, okay, if I ended up in the hospital and I got sent home, right, that's it, it's behind me, carry on. But I've since learned that's not a life I can have. I had to embrace it because it's part of me and it has slowed me down, but it's also made me, what shall I say, determined.

Wow. I mean, I think you're right, totally. When you're in your 20s, you're— you're— I'm going to beat the world up, I'm gonna win the world, right? Even though you're dealing with what you're dealing with. It's interesting though, you were— when did you know you were diagnosed with sickle cell? Was it in your 20s or was it before?

I was diagnosed at the age of 6, my mother tells me.

Okay, and so how did that affect your childhood? Did it affect it much?

What—

how did that look?

Absolutely. In particular, I have a very vivid memory. I don't remember the year, but I remember I was living in Berkhamsted at the time. My father had that parish there, so it's kind of like '71, '72. There's a slope down to the front door and there was a metal railing. And this is my first recollection of knowing that I had something that was debilitating. Mm-hmm. And my sister and my brothers and I were outside. It was a sunny day and I'm swinging on this railing as you do as a kid and you're going over and over and you're just playing and having fun.

Mm-hmm.

The next thing I know, I'm in pain. And I don't understand why. And then my mom is taking me to hospital, but that was also a time that made me realize that I was different from my siblings.

So as you grew through that life, going through that, when— what do you mean that it— you realized you were different from your siblings? Like, how did that experience in that moment shift your thoughts about, oh, I'm not just one of the kids anymore. I'm like, what was the thought?

The thought was based on the fact that we used to have a little mattress that my mum used to place in the living room on the floor in front of the fire that whenever I was unwell, I used to lie on and watch TV. Not sit in a chair, but I used to lie on the floor on this little mattress and hearing my parents, and again, this isn't a criticism, because they were caring for me, saying, "You have to rest. You can't do that. You have to rest." That's hard to take on board when you're that young and you see your siblings going out and having fun and doing things and you can't because you're in pain and you're lying on the floor and— or in hospital.

It's so interesting. I'm always fascinated, and I don't mean this in like the weird scientisty, poky way.

Oh no, ask away.

Ask away. I'm fascinated because I've been in my own healing journey. I've been in my own learning about things. And I've always said, you know, I didn't really have chronic illness until I was married, you know, as an adult. But when I look back, I feel like as a kid, there are like inklings of signs that I had something going on, but nobody knew. We didn't think anything of it. And it's like interesting that for you to have a diagnosis at the age of 6, you said, And then for my mother, my parents did.

Yeah, because at 6 I didn't know any better.

Yeah, I mean, because at 6, do we really understand what that even means? Like, do we? You know, we don't really even really understand what that is at that age, right? Exactly. But it's interesting to your experience that at that young age you noticed that you were different. You were different than your siblings. Your parents treated you different, it sounds like. And then you said earlier at the top of this is like, at 20, I just like, I'm going to take on the world. Nothing is going to stop me. So I'm curious where between the time of being, you know, 6 and getting into your 20s, did you know, know, okay, I have sickle cell, but that doesn't matter and I'm just going to keep going on with my life and act like it doesn't exist?

Good question. So, uh, 1982. I was working for a health insurance company and I had a crisis and the pain was that severe that they took me to hospital. That started, I think I had a period about 5 years when I didn't have anything. Mm-hmm. And then it started around about the age of 23. And again, suddenly you're in hospital, you are connected up to various pipes and what have you. And it's like, you know, what's going on? And I was still living at home and I was being told again by my parents, you have to rest, you can't do this, you can't do that. You know, and at that age you don't listen either. Because you still want to go for things. And, you know, I found I had a passion for radio and I wanted to work in production in radio. So I started doing hospital radio on a Thursday night, and I then wrote off to my local radio station, Essex Radio, and I got a gig there on a Saturday afternoon on the sports show.

Hmm.

And, you know, just hearing my parents say, you're doing too much, you've got to, you've got to stop. It's like, you know what, I realized not long after that me wanting to do these things was the denial. A way for me to prove that, you know, okay, I'm okay. I can deal with it when I'm in hospital. I can deal with it and get on with my life. And that's all I wanted to do, you know?

Yeah.

And then because I was working, you know, I didn't have a degree in those days, but I was working because I was following my passion and it paid off because I got a really cool job. Working at a radio station, a national radio station here in the UK called Radio 1. And it was in its glory days.

Oh wow.

And, um, yes, you know, it, it was absolutely fantastic. And, um, I went to stay with a friend. I think it was on a Thursday night. She was also at Radio 1 and we kind of really bonded. And Friday morning I woke up and I was in pain and I'm not one for drama. In the sense that when I was living at home, and which I was at this particular time, anytime I started having a crisis, my mum would call the ambulance, rightly so. And I'm thinking, I don't want the drama. I don't want the ambulance, you know? And then later in years, particularly when I had kids and you know, they were small, I never got the ambulance. I'd just get a cab, pre-Uber, and just take myself off to the hospital cuz I didn't want this. Drama of the ambulance pulling up outside the house on the street. It's a small street, the neighbors twitching their curtains, and you know, want any of that.

I get— no, I totally get that. I'm— I wonder, which is interesting, kind of bringing back to your story about your friend who's the bestselling author and all of these things, saying, here, you can be an author. You're like, no, no, no, I'm behind the scenes. Nobody needs to to see me. I'm just doing the thing. I wonder if that experience of growing up and going through those different things where it's like all the limelight and not the best way and not the best place has anything to do with later on being like, I can't be the person up front being the author. I wonder if that's a thought you've thought about.

No.

Mm.

No, I've enjoyed being a background person because that's my forte. I absolutely love it. And I remember in the '90s, I met a gentleman who was a client, but he happened to manage Nigel Kennedy at the time. And I was so impressed by this gentleman because of his command of language, the way he carried himself. He never raised his voice. You know, he was very level-headed, but I was impressed with him. You know, it was like, wow, I've never met anybody like him before. And that kind of made me pull my socks up in the sense that I wanted to be better at what I do. I wanted to be better read. I wanted to learn more, you know, that sort of thing. And let me just jump back a bit because when I was in pursuit of my passion, I wanted to work for a company and I was interviewed for a role in traffic, as in advertising, at a well-known company that did advertising for national television. And this was in the '80s. And I said, yeah, I've got sickle cell and what have you. And then about a week or so later, they rang me and told me that they turned me down because of my sickle cell.

Oh, wow.

And I didn't have an answer for them. They told me that. And I just thought, okay. That was a slap in the face. But again, hindsight's always fantastic, isn't it?

Yes, it is.

Because they did me a favor. Mm. But then I met people and I, you know, I met John Stanley and, you know, when I started working with Anne Perry, the writer, you know, I never said outright that having learned from losing that job that I've got sickle cell or I've got, you know, I never flagged it up. And I think when I first had my crisis with Anne and I ended up in hospital, yes, you know, because they were clients, you said, look, I'm in hospital, I'm okay. They send you the flowers first time. Third or fourth time, it doesn't happen anymore. It's just like, get better.

Yeah.

But you learn, you learn to live with it. And one of the things that I used to do in my, in the '80s, as I said, I've never done drugs and what have you. Because of my sickle cell. I went out to lunch one day with somebody from Radio 1, and I was working at a record company, and somebody from the record label. So the three of us went out for lunch at 1 o'clock, went to this restaurant and started drinking red wine. Quite wide.

Oh no, not the mix, not the mix.

No, no, the Cures.

Oh no.

I got back to the office about half past 6. I was so drunk. I went home, I started sickling, I was in a lot of pain. My mother called the doctor out, he said he couldn't give me anything because of the amount of alcohol I had in my system. And then a few days after that, that part of my mouth went numb. So I got alcohol poisoning. And that was December 10th, 1988.

Never forget.

Yeah, that's a day you'll never forget.

And I've not drunk since.

Oh wow.

But that's no biggie. That's, you know, that's not a problem. But, you know, I hope I've always— people have always seen me as somebody who can do well at their job. That for me has been the most important thing. I've never wanted to be defined by my sickle cell. I flag it up now because it's a way of educating people. Yeah. And also speaking on behalf of others, because I remember at 18 I would never have had the courage to speak out and say, I've got this, don't do that.

Yeah. And it's so interesting. I get, I mean, I get it. I think maybe I'm a, I don't know what this, how to say this. I just feel like when it comes to my chronic illnesses or those who have chronic illness, I have just come from the space of it is a part of me. However, I don't think a lot of people understand it. So when something happens, it's to me, it's a service to me and those who come behind me or who are with me and don't even know, you know, to give voice to that. And that's just kind of how I've kind of led with it in the very beginning. But I do understand, to your point, there are things to the fear, right, of if I flag this up, as you say, this must be a UK saying of saying this, like flag this up. I'm like, oh, I like that. I might start saying that. If you flag that up and you don't get a job or you don't get this opportunity, like that's a huge fear for a lot of people in whatever chronic illness that they have. If you were to advise someone who is currently living with sickle cell, who might be in their 20s or in their 30s, and they are struggling with how do they embrace this part of their— part of their life, part of their identity, while also showing up in the way that they want to, being determined, doing their passionate things that they're excited to, what advice would you give to that person who might be in that space who has that tug of war. I'm like, do I flag that up? Do I not? When is appropriate? What is your thoughts on that?

So it's not the 1980s. So I would say to anybody in the nicest possible way, own it. We are far more educated about rare conditions now than we were in the '80s.

Yeah.

Own it.

Yeah. That—

I mean, I love hearing folks who are from that time who felt now that are like, you know, own it. If you were to like just own— and then I think in a lot of different ways, I understand and I empathize extremely on why during the '80s and the '90s, you may not have flagged it up because it has been It was scary. Nobody really understood it, but I feel like it was a Black condition. I was gonna say, I was gonna say, and then you add the factor of being African American, that adds to, oh, this is another thing. Like, it's our— I always say, and this is a question for you too, living with chronic illness as a Black woman and multiple, you're not just fighting against the the illness, you're also fighting against what you look like with the illness, even though your illness is invisible. First, so for example, sickle cell is invisible, but being Black isn't.

Absolutely. Right. Tell me, how did you come to terms with your chronic condition? What was your journey?

I think my journey just has been in general one of like, what is this? I can't do this alone. That's just always been my angle of being like, I have to be willing to share this with people. But to your point, it's also been my driver of like, I have to do things that bring me joy. I have to do things that I'm passionate about because I already got enough drama and issues I gotta deal with that aren't so pretty. So why would I put myself in a space where I'm doing things that add to my pain, that add to my triggers, that add to me being in the hospital? I'm gonna do the opposite. It, right? And it might take the longer path. It might not look as glamorous as some others, but that's been my journey with living with it. And I've kind of— I mean, the show in general, it's kind of like a really big flag saying, hey, you can run your business, start a business living with chronic illness. You can have a career and advocate for yourself and do all those things and tell these stories. And still do things that you love and have the freedom that you can have in the circumstance that you have. So with you now, you know, leaning always, it sounds like you've always leaned in to your passion. Has that helped you be able to cope with the things that happen with sickle cell?

Oh, yes. Absolutely. Absolutely. Because it's been my focus. And, you know, when I started working for the BBC back in 1982, it was in a secretarial capacity, but it was a stepping stone to get to working in the area that I wanted to. So I was determined to do it, come hell or high water. And I remember, I've got to say this because this is how I feel. When I was in hospital and I was living at home and mum and dad were, they would come and see me and say, "Well, you've got to stop doing that. You can't work at a weekend. You've got to rest," and what have you. They were learning about sickle cell the same as I was. Yes, they were older than I and had the ability to understand it more than I, but you know, I was the one that was going through it. And that's a very different thing. You know, my siblings were onlookers. They didn't understand. And I don't think they understand it to this day. Yeah. You know, um, but it's not my job to educate them. But I, I love what I do. I love the people that I meet. You know, I love the fact that we've all got stories and just the conversation. You find out so much more about other people. Yeah, sorry, I forgot what the question was.

Yeah, no, the question was about, you know, how has being really passionate and leaning into your passion helped you cope with living with psychosis?

Yeah, it's the positivity of what I do. It's the fact that, you know, they call her my twin because we look so alike, works with children that are on the spectrum and have issues. And she was telling me a horrific story of a child biting one of the other people within the home. And I'm thinking, oh my God, you know, I'm not worthy, I'm not worthy. You're my niece and you're doing this. Thinking I couldn't do that. And this is going to sound really awful, and I don't mean it, intend it to be awful, but that's a negative environment. You understand what I mean? What I do, yes, I know it's fluff, but it's positive. It's about seeing people succeed in a way. For my niece to see people succeed in that way is a very different thing. But she's having to deal with a lot of the negativity before she gets a sign of improvement. I see it when I see one of my clients in the national newspapers or on national TV. Again, it's so superficial. But it's what's kept me going.

I mean, I love that you, you're sharing this because those are what you do and what your niece does, two different things. And I'm sure though, the reason why she does it has to come from this passionate place. It has to come from this need to see and support someone in that way, because I don't think anybody—

and she has the talent to do it. Yeah. Right.

So the question I have for you is, are we saying there's no stress in what you do?

Oh, that's a very good question. I think the stress is around running to get the train or the air— to the airport to get a flight. Again, it's so superficial.

Mm-hmm.

But rewards for me are seeing the payoffs. Yeah, you know, when you come to me with your book and say, you know, I want you to promote my book, hey Nikita, I've been looking forward to this, but I get you on CNN, for example. Yeah, in an ideal world, you know, that thrills me. Yeah, that would thrill me to bits.

I think this is such an— this is not where I expected this chat to kind of end up, which is always so funny when I have these chats and I'm like, oh, this is interesting. I think, I think it's interesting Because oftentimes I think many of us, and you've done this interestingly, when we're in quote unquote survival brain of living with chronic illness, living with pain, we often make decisions that kind of keep us perpetually. And I've seen this with my clients.

I think you summed it up. You summed it up. It's the survival brain because you either sink or swim.

Yeah. And you have identified, and this is, and I'm kind of breaking this down 'cause I think, and I'd love to hear if you feel this way, you've identified, I have this thing that I cannot necessarily control so like too much. Obviously there's your protocols or whatever it is that you're using to support you in living with sickle cell, but also you recognize that to survive this condition, things like really stressful, really negative things will make this worse, will make it worse. And therefore I cannot be in that space, right? All of the time. That cannot be my consumption. And your brain— this is from what I'm gathering from you— your brain has said, no, we're dealing with this thing, we have this going on, but I want my life to reflect joy. I want my life to reflect light and easy because that means I can survive longer. I can actually kind of thrive beyond just being in the situation. Did I hit that?

Well, you know, correct. You know, people say you surround yourself with people that lift you up. That's what I want, you know. I can't be around people that are negative, you know, because they don't understand what I'm going through. And again, it's not a criticism, it's about understanding.

Yeah.

Hearing people moan when they're in the best of health about X, Y, and Z, which is something that they can control. Mm-hmm. Um, and you, you've got this condition that again, which they don't understand, that's life-threatening. Since the day that I was born, it's life-threatening. You know, I have to surround my people. I have to look for the joy. In life. Yeah, I have to be around people that lift me up.

So you said something earlier about your family, and you can tell me, Nikita Williams, we ain't talking about that, but I'm curious, with living with the sickle cell and actually experiencing that, and none of your fam— this is— I mean, from what I've learned and understood about sickle cell is very hereditary. It's very often there's a lot of family within the family that has it that didn't realize they had it. And then years, decades, generations go by and we learn that this is part of their lineage. How has you being in such a large family affected your relationships with your family? Have you sought relationship from chosen family more because of the— what is that dynamic?

Interesting. I personally feel that it has adversely impacted family dynamics because of the lack of understanding, lack of knowledge. And, um, a sibling said to me not that long ago, because I spent so much time in hospital in my childhood, because Mum was constantly with me, they felt left out. They didn't have that attention. And I understand that. Yeah. But it's not a situation I could control because I was ill. Mm-hmm. Yeah. And I'm the youngest, and I'm sorry that happened.

Yeah.

But, you know, we are adults now. We need to process those things and understand it as best we can.

Yeah.

Yeah. I mean, I think it makes sense, especially when I think this, this conversation about having family not understanding living with chronic illness, this comes up in a majority of the conversations I have with women specifically, who are like, their siblings don't understand it, their family don't really understand it until, like, maybe one day they might have a semblance of what you're experiencing. And there is this disconnect. And so a lot of the women I talk to end up finding community in other places that are not family, that are like what I call chosen family, that is tied to what they enjoy a lot. It's usually tied to their passions, their hobbies, or their business because they started their business out of this space. So in your world as an author and as a publicist and all of these things that you do, are you finding your connection? Are you finding your people in that space?

Always have, always have. It's about the creative. It's not the focus on the health. It's about the conversations, the creative conversations, things that uplift, things that make you think, things that inspire, you know. And I'm so lucky that I found those people in my life that just are there.

Yeah.

Do they support you as well when you are having a crisis, when there are things going on? Do they understand or do they at least provide the space for what that means for you?

I don't know the answer to that necessarily. It's been over 10 years since I've had a major sickle crisis, thanks to the meds I'm on. But yes, I remember two people who were very supportive of me, but I just wanted to just not have that because that made me feel bad. It was nice that they showed that courtesy to me, but it was also another reminder that I wasn't 100%.

But let's talk about that for a second because you're not 100% is like— this is what's always fascinating to me. You have done amazing things. You have supported amazing people.

I don't see it that way.

I know you don't see it that way, but I am sure the authors that you have helped be seen more, I'm sure the connections you've provided, I'm sure the book you have written have moved people? Like, how many— I don't know about you, but I think about— I put it in relationship to people that I care about. And I think they couldn't do— and I don't mean this in like— this is going to sound so, like, uppity, like, so, like, prideful. But I always think, I'm like, you couldn't live a day in my life, especially when you're going through that time of your life, or being in crisis more frequently and doing what I do and living my life, I can't imagine certain people in my life that are, are close to me ever being able to do that, like ever being able to live that life in pain constantly in a life-threatening situation and also building other people up in the way that you have. So I'm, I'm curious, with all that you've done, is there a part of you that's like, I am doing something?

No. What I keep thinking about is that, you know, I've gone through the phase of, for me, why did I have to have this, etc., to thinking that, you know, God gave it to me because he knew I was strong enough to deal with it. That's arrogant. I know it's arrogant. It does sound arrogant. It's not intended to be arrogant, but that helps me get through my day.

Yeah, I think it's interesting. I'm curious to know, as an author now, as a writer, as a storyteller, and your book, which is super cool— I'm still getting through it, like, I'm still reading through it. It's really cool. I think the thing I find interesting is your attention to details in the spaces that you're talking about, the history that you're talking about. And I wonder if that is your— is that just your natural talent? Is that something you just naturally do in life? And how can you see that as just I'm just good. Like, it's— I don't know what the word— the thing I'm trying to say here other than like, it is exceptionally talented and difficult to also do that with the ups and downs that come with life.

Thank you for saying that.

Wow.

I think I need to give that a lot more thought. Okay, just bear with me a moment. Thank you.

It's—

yeah, I'm gonna need— I need to give that a bit more thought. I have to say, you know, I did have the book edited, and if you saw the book when I gave it to my editor about, uh, 6 years ago, I was embarrassed. But basically what I did is I poured the jigsaw puzzle out of the box onto the table and she assembled it for me. I have people in my life that do that for me.

Yeah.

That's also the upliftment that I get from people within my circle, you know. So no, I'm not good. I don't even think I could say that I'm good. I get results. I think that's the most I can say.

I feel like that's the most important thing to say. Like, I mean, you know, you think you're good but you get results. To me, there are people that are good-ish but still aren't getting results. So the fact that, you know what I'm saying?

Like, hang on a minute, you know, Mariah Carey's brilliant, Beyoncé's brilliant. Yes, I would love to be able to go on stage and perform in the way that they do, particularly Beyoncé. Where does she get that energy from? You know, if I go to a Beyoncé concert, I'm sorry, I've got to sit there. You know, if I stand, it's for half an hour, but I've got to sit there because I just can't match their energy. Yeah, they are good. They are fantastic at what they do. I think I'm just humble, you know. I'm lucky that I've had the opportunity to do what I've done, to meet the people that I've done.

No, I think it's, I think it's beautiful, and I don't think there's anything wrong with Obviously, it's a beautiful, godly quality to be humble. I also think sometimes as women of color, we tend to downplay our own lane of genius, our own— the gift that we were given, small or big or however, Beyoncé or not Beyoncé, it still creates a ripple effect in someone's life. And if it creates results, that's a huge thing. I mean, we could have stayed in the corner and just kept our gifts to ourselves, and we could have allowed, you know, the pain, specifically just the pain and the fear of what we experienced to, like, squash our little bit of power or a little bit of talents and gifts that we have. But we chose, and I say you chose, to lean into your gifts. You chose to lean in and share them and offer them to other people, and it happened to create results. But I don't feel like in general that they just happened to create results. You were skillful in creating, helping someone create the results. Even with that jigsaw puzzle of your book, she couldn't have put— they couldn't have put the book together without the puzzles, the jigsaw, the parts. Yes, exactly.

Yeah. You know, I, I had an awakening in my 20s because I had a bad spell of being in hospital. I think I was in hospital for about 3 weeks at one point. And I'm thinking I'm going to lose my job and what have you. And I considered the easy way out. I remember sitting on the edge of my bed with a box of painkillers thinking, you know, Yeah, but something said to me, it's the coward's way out. It was just after that job I'd lost because I'd owned up about my sickle cell. But something spoke to me, or someone spoke to me, and said, you know what, life's worth fighting for.

Wow, thank you for sharing that. I hope that serves someone who has experienced that. I personally have too. I've got an episode about it somewhere in here. But yeah, I think we— I mean, that kind of level of pain, that level of consistent unknowing, consistent pushing, going, doing. And then I think many of us get to that point at some point feeling like, is this this is just too hard. This is just too hard. This is too much.

Yeah.

Right. And I can imagine, like, for me, I had that same moment, that prayer I had. And then the answer to that prayer was like instantaneous. It's amazing. I don't think we can do this on our own. And that's part of the reason why I have the show for more stories, for more women to feel seen, heard, in whatever the way that this looks like to them, right? It's not gonna look like yours or mine's all of the time, but hopefully there's essence or pictures of this where you're listening and you can see a flex of yourself within these stories and feel like, okay, I'm not alone and I can navigate this journey. And there are people that I could reach out to if I needed to for more support around whatever I'm going through. And so is that something you've, since that moment, have done or discovered?

Well, a key moment for me was, 'cause I don't know whether you've had anything like this in America, but there was a period of time in the '90s where, you know, teachers couldn't hug their students. You know, kid falls over in school and they're bawling their eyes out, they, you know, immediately they run to the teacher and, They said, you can't comfort a child or something like that in a similar situation. And, um, 2012, I think it was, before I started my meds, I was sickling every week for about 3 weeks. And I went into hospital and the nurse put her arm around me. Mm. And that gesture helped me feel so much better at the time.

Mm.

It's my team at the hospital, particularly now because they have changed how they— they listen more to the patients, which they didn't used to. You know, if you're in pain, particularly a male going into hospital with a sickle crisis, They think you're a drug addict. Well, they used to.

Well, here in the States we still have that problem. We have that extremely bad.

But the doctors and nurses have been taught to understand that, you know, sickle cell is invisible, the pain is invisible. Listen to your patients. And I would have to say, over the last 10 years, to see this difference in the medical team. I remember they, they invited us sickle patients for a meeting to see what they were developing within the unit and what have you. And I said to the head, I can't remember his name, do you know what? My faith has changed in the nursing. So yes, my nursing team. My family still don't understand it. They don't ask me about it. I don't talk to them about it. If they wanted to, then I would. I won't shove it down their throats. But yeah, you know, um, it's my nursing team that I give thanks to. What are the external circumstances that impact you?

I definitely think stress, like stress in general, like stress in general, and I think this is everybody, like negative stress is a— it's an instantaneous trigger. Absolutely. Right. It's something that definitely affects me. Negativity, same thing. But also for me, it is— relationships are really triggering for me because of that lane of, you know, I have friends who have researched my conditions and they have made it their mission to understand. Right. And I have family who does— that is not something that have done and that is not something that they're willing. Right, right. So I— yeah. So it's— it is in those situations that I find it's more challenging because I'm an empath. And so because of being an empath, I automatically want other people to exchange the energy of I'm with you in this. Positive, negative, whatever. And of course, I, I'm, I'm down for a good time. I'm down to have, you know, joy, all of the emotions that are there. But also, there are times where it's not like that. There are times where I'm sitting in bed or at the hospital. It's been a couple of years now because I've been in remission with some of my things. But I think the reason why I've been in remission with some of my things is because I've distanced myself from the negative things and stressors and the triggers of people and situations that don't amplify that, because that's more stressful to me than a lot of different things. And that's the same reason why I can't work for somebody, because I just physiologically cannot deal with the unknowing of their expectation of me, right? And so, yeah, that's a really good question. Thanks for asking me that. So if someone's listening to the show and they're like, okay, this has been a fascinating conversation. Someone who's living with sickle cell who has a passion that they're excited about, but they feel like they may not be able to do it. Maybe they wanna be an author, maybe they wanna be a publicist or working with someone in the entertainment industry. What would be your advice for them?

Stay focused on your passion, but also do your research about your condition. Know your limitations because the limitations are temporary, can be temporary, but you can achieve anything that you put your mind to.

Love that.

And what is something that you thought was true in the past that you no longer think is true now?

Well, I was always told that life expectancy for somebody with sickle cell was between the age of 42 to 47.

Look at you.

I hope I'm not tempting fate.

Look at you. Well, if you did, you would— I mean, we— 62, you said earlier?

62.

Looking fabulous.

Thank you. As are you.

Oh my goodness. Well, this has been a joy. Can you tell us about your book?

So the book is called Konka Rabbia: The Struggle for Identity, and it's set in Trinidad from about 1770 onwards at a very interesting time, the time when a lot of colonization was going on in the Caribbean, the slave trade, et cetera. And because it's my parents' island, I was inspired to write it because when I lived in Trinidad between 1975 to '79, I would hear these interesting tidbits of stories that my parents would come out with. And as I've grown up and I've realized that a lot of stories to do with the slave trade focus on America— no offense— Jamaica, or Barbados, and what have you, or the UK. And I thought Trinidad's got this wonderful story about being fought over by the French, the British, the Spanish. It was a Spanish colony, and how Britain installed its first lawless governor and what went on at the time. And nobody has taken up that story for television or for film. And I just think it's a very interesting story about a small island that was part of the slave trade.

So if you want to know about the missing story, you guys got to go read the book. So we'll definitely have the link to everything in our show notes. Thank you so much for being here and sharing.

Oh, thank you. And thank you for the work that you do as well.

Oh, thank you. I, I appreciate you. I appreciate— I really do think we need more women in the space of what you do, especially in the publicist world, who has this light air that just wants to bring joy to people, and I feel that from you, and that's amazing.

Well, hopefully we're going to be working together, Nikita Williams.

She's another one who's trying to get me to write a book, y'all. She's another one. But anyway, let's close. Thank you so much for being here.

Thank you.

That's a wrap for this episode of Business with Chronic Illness. If you would like to start grow an online coaching business with me, head to the show notes to click a link to book a sales call and learn how to make money with chronic illness. You can also check out our website at www.craftedtothrive.com for this episode's show notes and join our email list to get exclusive content where I coach you on how to chronically grow a profitable business while living with chronic illness. Until next time, remember, yes, you are crafted to thrive.