Living with an invisible illness

D'andre Hardy developed a severe case of Crohn's colitis at age 12 and spent years struggling with her condition. She tried countless management strategies, took dozens of different medications, and ultimately chose to undergo an ostomy procedure to help regain control of her life. It was that experience that led to her founding the Seen Society, an organization dedicated to revising the narrative about who people with invisible illnesses are, what they need, and aid in the curation of inclusive environments where everyone thrives. Her story is an inspiration for anyone who suffers with invisible illnesses - not simply incontinence, but any condition that isn't always noticeable from the outside but that has a profound impact on your wellbeing.

To learn more about the Seen Society, click here. You can also click on the following links to find D'andre and the Seen Society on TikTok, Facebook, Instagram and YouTube. 

To learn more about the National Association for Continence, click here, and be sure to follow us on Facebook, Instagram, Twitter and Pinterest.

Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/

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Transcript

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America's leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers, all available at NAFC.org. 

Welcome back to another episode of Life Without Leaks. I'm your host, Bruce Kassover, and joining us today again is Steve Gregg, the Executive Director for the National Association for Continence. Welcome, Steve. Thanks for being here. 

Steve Gregg: Thanks, Bruce. I'm really looking forward to our conversation today. This should be really exciting and very informative.

Bruce Kassover: Yeah, I'm really looking forward to it because this is going to be a perspective that is too often not heard, not just in the world of incontinence, but in the world of healthcare. We're going to be speaking with D’andre Hardy. She's the creator and principal consultant for The Seen Society. And if you haven't heard of The Seen Society before, they're an organization that seeks to revise the narrative about who people with invisible illnesses are, what they need, helping curate an inclusive environment where everybody can thrive. So welcome and thank you for joining us, D’andre. 

D’andre Hardy: Thank you for having me. I'm so happy to be here and I'm just overjoyed that I'm able to share my story and my information and I love the work that your organization is doing. So thank you. 

Bruce Kassover: Well, thank you. We're really excited to hear your perspective, because I think that what you're going to be talking about will have some direct relevance to the people who are normally our audience, people who deal with incontinence issues and things of that nature, but I think that there's a much broader message that's really important, both for people with illnesses, with invisible illnesses, also for healthcare providers, and for, you know, other people in general who just interact with people all day long.

So maybe you want to tell us a little bit about the genesis of the Seen Society and how you came to become the person that you are today.

D’andre Hardy: Yes. So and I hope my message resonates with all of those populations because it intersects with all of those different roles and people and, so, the Seen Society was really birthed 23 years ago.

I was 12 years old and I was diagnosed with Crohn's colitis. And so, Crohn's colitis is an inflammatory bowel disease, is very painful, and what a lot of people don't know is, Crohn's disease can affect anything from your mouth all the way through your digestive system down to the rectum. So people can have Crohn's disease in any part of those areas.

So, as a 12-year-old, I was diagnosed and the symptoms where I started just having to go to the bathroom after I ate. No one knew why, I lost a lot of weight. I was very active. I was in sports. I played tennis. I played volleyball and I was just a normal 12-year-old, and I just started getting really sick, losing a lot of weight, being tired, having a lot of pain after I ate.

And so there were a lot of different people, tried a lot of different medicines and in the end, finally, I got the diagnosis probably about six or seven months in, I got the diagnosis of Crohn's disease. I lived on a military base, so I am an army brat. I grew up in Fort Hood, Texas. And so I had access to health care.

And the reason why I think my diagnosis time was shorter than a lot of other people that I hear their stories, it takes years for them to get diagnosed, is because I had access to the military base into a lot of research that was going on. But I was diagnosed at 12, we really didn't know what that meant, and as a child, when you're ill, it's really hard to process because you think, okay, I'm sick and I'll get better. So it took years for me to process that this was a chronic illness and what that meant while going through, you know, adolescence, college years, then young adulthood. It was really a journey.

So that all happened – diagnosed at 12, was on different medicines. I remember being going to Lackland Air Force Base to get Remicade. So I was one of the first people to get Remicade for Crohn's disease, like, in that area, but I still had to drive about 2 hours to go get it to the at the Air Force Base. So I remember that and just hoping that the medicine worked because I just wanted to be normal and in school.

I remember people having a lot of questions and my teachers having a lot of questions about what was going on with me. I always had a note, but I just still felt like an outsider. I felt like something was wrong with me, that this is not how a normal 12-year-old, 13, 14, 15-year-old's life is supposed to be.

So I've always had that feeling just since my diagnosis. So fast forward, I go to college. My Crohn's disease got really bad in college, and someone told me when I was in college that, “You have very severe lower digestive Crohn's, one day you're going to have to have an ostomy.” And I'm like, “No, I'm not,” you know, when you're young, you feel like, “Oh, that's not going to happen to me. I'm still going to be invincible some type of way.” And so I just refuted it and I did everything I could to not get one. 

Fast forward to 2013. It just got so bad. I had another skin condition as a result of having the Crohn's disease called hidradenitis suppurativa. And it was to the point where I had really bad abscesses and I was just like trying to push through the pain, and that's a lot of feelings. A lot of people who have chronic illnesses just learn to push through and push through. And so, this was an unhealthy coping mechanism that I had at the time. I was just trying to push through. 

Well, finally, I got so sick. I had to have an emergency surgery. I had to get a temporary ostomy and I woke up and they were like, “We don't know how you weren't septic when you came in here, because the abscess you had should have absolutely erupted and went into your bloodstream.” Like, there's no way, like, the doctors were like, “You are very lucky.” I call it blessed. But they were like, “You are very lucky because you had this major abscess and we don't know how it didn't erupt.”

And so that started the beginning of the Seen Society, because I realized that I was pushing myself through a lot of things because I wanted to be successful at work. I was still an ambitious person, wanted to like have as normal of a life as possible, but a lot of the traditional career advice, the traditional, how I fit in at work, how I just navigated my life, a lot of those, that advice did not work for me. And especially being a Black woman, I just felt like being a Black woman with an invisible illness, the traditional career advice, the traditional conversations about how you're successful, it just didn't apply to me. And so I felt like an outsider, but I didn't really know what to do with that.

And so, fast forward to 2020, the ostomy calmed my Crohn’s down, but the hidradenitis, the inflammation was in my colon, and so the skin condition was still just really bad as a result of the inflammation still sitting there. So my life did improve after I got the ostomy, fought it tooth and nail, didn't want it, but my life improved.

I learned how to live with it and I was still just determined. I always had this determination to like make sure that my life and who I was didn't get disrupted by this illness. Like I came to a point where I was like, okay, we're going to be me and I have Crohn’s, but Crohn’s can't have me. So I always try to still maintain my personal style and still try to continue to go out and do the things that I always love to do.

So in 2020, I made the decision that my life's improved so much. I want to eliminate the skin issues and the inflammation, just sitting there. colon cancer runs in my family, digestive issues run in my family. So I made the decision to make the ostomy permanent. And so December of 2020, I made it permanent.

I got my colon removed and my life improved and my quality of health improved since then. So that is when I decided to really think about what is creating a community for women who need to grapple with, understand what success means for them, make workspaces more inclusive, what does that look like for someone who, when you show up and you're new to a space and you're performing and you're great, people who listen to this won't see me, but you look normal, like, look normal right now, what does that look like when you get sick and then you have everyone saying, “Oh, well, you don't look sick,” and you have people questioning who you are and what your true intentions are, and you're just trying to deal with one of the hardest challenges someone can go through in their life. And so I created the Seen Society to talk through that.

And I think this is a powerful moment of how we're talking about work life balance, how we're talking about leadership, how we're talking about belonging and inclusion, to really bring in invisible illnesses to a forefront and people see them in a different light. That is how the Seen Society started, and that's my journey to get to this point. 

Bruce Kassover: Oh, that's fascinating. And it's really interesting and inspiring that you managed to take something that can really be limiting for so many people and is really limiting for so many people and really turned it to your advantage and are making something good out of it.

Now, before we talk a little bit about the Seen Society specifically, I wanted to talk a little bit more about ostomies, because that's something that those who are familiar with them, like you said you were, often, you know, very, very, you know, frightened by the idea. And for those who aren't familiar with them, maybe this is a good chance to sort of explain what they are and talk about how maybe some of those common perceptions aren't necessarily reality.

So maybe you could tell us a little bit about what an ostomy is and why it's not necessarily the nightmare that some people think that it is. 

D’andre Hardy: Thank you for that question, because I try to tell everyone that it is not the worst thing in the world, even though it sounds like it. So an ostomy is when a part of your intestine is pulled out of your stomach, and then you have a bag over it to release waste in. People who receive ostomies either have something wrong with their digestive system, or they've encountered an injury that causes them to have to not use the restroom and not eliminate waste in the traditional way. So, for me, it was Crohn's disease – very, very inflamed colon – made going to the restroom very uncomfortable, painful, also had abscesses. And so in order for that to heal, they had to pull some of my intestine out through a surgery.

And then I have a bag that I change and over it where the waste eliminates into. And so some of the misconceptions, which again, you know, growing up, I didn't even hear about ostomies until someone told me what an ostomy was. But once I looked it up and then thought about the perceptions, I was like, “Oh, no, I'm not getting one of those,” because the perception is, is that, you know, everyone's going to be able to see it. It's going to smell. People are going to be able to smell you. It's going to be embarrassing. It's going to leak everywhere all the time. Like, that's what I thought my life was going to be like, before I got one. And now that I have one, like, the technology has changed so much and people, a lot of people don't even know I have it until I tell them.

I still have a lot of options of things I can wear. There are ostomates who are out there, like, still hiking, still swimming. I still swim. I box twice, three times a week. So I can, you can be active. And then there are ostomates who wear bathing suits, who wear two pieces and who are comfortable showing there.

So it just depends on your personal preference. But the quality of life, like looking back to the moment where I was told I would have to get one, so I was told I was going to have to get one when I was 16 and I was like, I'm not doing that. So I refuted it. I was told a couple of times, “Hey, you may want to consider this.”

I didn't want to consider it. And then in the emergency situation, when I was told it, I still was pushing back. I was just engaged. We had a destination wedding in Jamaica that next year. And I was like, I'm not going to Jamaica with an ostomy. And looking back, it sounds like, for me, I'm like, I cannot believe I was saying these things, but in the moment when you just feel like no one understands you up until a couple of years ago, I felt like people of color and Black people were really underrepresented in the GI space.

So growing up, I never saw anyone who looked like me with an ostomy or with Crohn's disease. And so I really felt like I just was this random person who got this disease that older people get that, like, I shouldn't have. And so when you're, people who you don't, can't connect to are talking to you about it, you just you want to push back. 

So if anyone is listening to this, and you know that someone who's struggling with an ostomy, or, you know, someone who has to get one, or you have to get one, I can tell you, I would love to talk to you, connect with you through the Seen Society. But I can tell you that it does really change your quality of life.

There are so many options of different ostomy bags and different systems that it really, once you're used to it, I'm not going to say it doesn't alter your life. Like it's not another step to do and it's not hard, but once you get used to it, like you can find a rhythm and you can still do the things you enjoy and be the person you want to be.

Bruce Kassover: Well, that's got to be very encouraging, and I guess what it does is, it takes something that people think might be a visible condition and makes it an invisible one, which is, yeah, and that's where I guess the Seen Society comes in. Maybe you want to talk a little bit about invisible illnesses. Give us a sense of what that means for people and what life is like for somebody who has one. I can imagine it runs an enormous gamut of different conditions, but maybe there's some commonalities that are worth discussing.

D’andre Hardy: Absolutely, yes. So when I tell talk to people about invisible illnesses, the majority of people have an invisible illness or may have one in their life. And so when I talk to people about it, I explain it as it's something that it's a chronic illness. So when I talk about chronic, something that is not going to be healed soon, or they may not have a cure for it, that you have been dealing with for a year or more, and an invisible illness is when you have an illness, we're struggling with something that no one can see. So no one can look at me and say, “Oh, she has Crohn's disease. She had this skin condition. She even has an ostomy.” Like there are times I wear things and I'm like, I don't care if people see it and there are other times where I don't, and so those times people would not know I had one, and so people when they, when I explain it like that, diabetes is an invisible illness and incontinence is an invisible illness.

Neurodiversity. If you're struggling with something like that's negative, like anxiety, depression, anything like that, that may be an invisible illness for people. Cancer is an invisible illness until, unless, if they're losing their hair, people notice other things. People wouldn't know you had cancer just by looking at you.

Lupus is an invisible illness. Multiple sclerosis. So there are other things. Chronic asthma. I talked to someone who had chronic asthma and she is dealing with issues at work. Someone else I know has vertigo and migraines. So all of those things can be counted as an invisible illness. And when I talk about what it feels like I tell people, it's like having an invisible book bag filled with rocks on your back.

So no one can see what you're carrying, but they can see the effects of what they're, what you're carrying on you. So they can't see it. The pain they can't see, like, “Oh, you're, you know, you're going through this,” but they can see that you may be late to work or you're not showing up as yourself or you're missing events with your friends or you're withdrawing and, or you're irritable, but they don't see, you know, the cause of it. So that is how I explain what it feels like to have an invisible illness to folks. And it's really, people are able to connect to that example. 

Bruce Kassover: Yeah, I like that analogy. That makes a lot of sense. Now, one thing I'm wondering is that people with more obvious disabilities, you know, people who are in, you know, wheelchairs as one example, you know, they've been fighting to show what they're capable of, and to try and, and, you know, demonstrate that they're as full a part of society and fully capable of anything as people without disabilities.

And it sounds like that's part of what your mission at the Seen Society is also. So what are some of the different challenges that are faced by people who have invisible illnesses versus those who have health challenges that are more noticeable?

D’andre Hardy: I love that question. So I think that for people with invisible illnesses and invisible disabilities, there's a lot of threat to psychological safety because people don't… so, when people can see a disability, there are people who choose to be not kind. And then there are people like, who know, “Hey, hey, let me try to help this person,” where this person is going through this. I mean, there's still a lot of stigma around physical disability so I do not want to take away from that at all.

And so invisible illnesses, I think, really are more of the psychological safety. like I said, because when you are, let's give work for an example, if you're struggling at work, and, you know, no one can see what you're what you're struggling with, it is hard to come out and say, like, “Hey, this is what I'm struggling with,” because now you don't know if people are going to fire you, if you're going to miss on opportunities, and also, you may feel like, I know for me, I felt like I had to do everything on my own, so I feel like I had to overwork so I could prove myself so that I wouldn't be a burden or let people down.

When I got sick, you may also feel like you have to constantly explain yourself because people don't know what's going on. So you feel like, okay, I have to constantly explain myself or I'd have to constantly have a story about why I have so many appointments and this or that. And so I feel like one of the firwst, yeah, signs of distress is like a disruption in psychological safety with an invisible illness. 

And people can also just feel isolated and not wanted and withdrawn because they feel like there's not a safe space. They can't trust anybody. And they're just going to deal with it themselves because looking normal it’s easier to get through life and just struggle privately than coming out and having that fear of rejection or people really just treating you bad or even not understanding how to help you.

And then sometimes you don't even know or understand how you want people to help you because it's so new. So for a long time, I'm like. I would tell my friends, I don't know what you can do to help me except for just be my friend, but there's really nothing else you can do to help me. Until I had to really sit down and work through that and think about tangible ways that they could show up for me.

So I think feeling like a burden, feeling isolated. Disruption in psychological safety in your environment and in your just everyday life are things that people with invisible illnesses struggle with. And I think from the medical perspective, people may struggle with doctors and health care providers believing them or even being able to show what their symptoms are if their symptoms are not horrible when they're in the doctor's office.

Steve Gregg: Your story is honestly amazing, and the way you present it makes it seem, not that it was easy, but you've accomplished so much. Can we go back and talk about the moments of indecision and how you found help? A lot of those folks that we talked to and come to us are in the first stages, “I don't know what this is and I don't know where to go.” Now you were fortunate to be on a military base, but again, it wasn't yesterday. And so my guess is that when you were talking to physicians, and understanding how to treat a 12 year old with Crohn's would have been really challenging, really hard, both for you and your family. Can you talk about those early days a little bit?

D’andre Hardy: Yes, thank you for bringing that up because those early days were very, very rough for me. So you see, I have to pause because it brings back the feelings and the confusion, isolation that I had and I know that my mom had. So I had a good doctor, and I know so many people don't, and so that was, that was a blessing and a privilege that I had is that I did have a good doctor who did his best to explain things to me. 

What was hard – so, in the moment of diagnosis, what was hard was figuring out how, like, how do I navigate this day to day because now that I can't eat, and then this was before, like, you could go online and chat with your doctor and all of that. like, this was their dial up, so we didn't interface with our doctors through the Internet.

So, you know, having to navigate appointments and then, what is considered an appointment-worthy thing and what's just normal for that, trying to figure that out, trying to grapple with… I know me and my mom grappled a lot with what kind of life, quality of life I would have. Was I going to be this sick forever?

I mean, there was one time I was taking 15 pills a day because the medicine wasn't caught up. So there was a medicine called Pentasa and I had to take a lot of Pentasa because they thought it was some like anti-acid piece would help with Crohn's. So there was a lot of experimental things that I had to do that were scary, but I didn't feel like I had a choice. Because the alternative was just not getting better. So I would say to someone in those early phases, that try to get as many opinions as possible, professional opinions as possible. And then also try to find an organization or group that can help you go through that.

What was isolating for me and my family is that there was not a group of people who we knew who were going through the same thing. So there was nothing like, there was not another mom who was like, “Oh, my daughter has Crohn's disease too. This is what we've done or another sick kid that I knew.” So we just felt alone and we just felt like, if we go to the doc, we keep going to the doctor and we ask these questions, we get the same answers. No one really has answers. And so it was scary. It was frightening. There were times where I was, I didn't really think I would even live to be, I'm like, am I going to make it to 18? Because I'm just so sick. Or do I even want to make it to 18? And if the rest of my life is like that, so honestly, there were, those were thoughts I had, like, how long can I really live like this? And so finding a group now, I feel like there's so many different groups for people that are helping with research and helping with patient engagement, like, isolation is a natural coping mechanism for me.

And so, for people who may have that, I urge them not to isolate. And try to, even if you don't have the energy to find that group, if you have a friend, a family member who wants to do this and was walking this journey with you to have them help you find that group in that space, because even having this disease for 23 years, I found Color of Crohn’s and Chronic Illness two years ago, and it's really changed my life. 

So, felt like I had things down, but just having a space and a group chat where I can say, “Hey, this is what I'm going through today,” or “My ostomy bag did this,” and other people are in there and they're like, “Yeah, this is what I do,” or “This is what happens, or are you okay?”

I've had people call me, or I've called people who are going through something just to say like, “Hey, I saw your message and I just wanted you to know I'm here for you.” Like that type of community is priceless. So have your community of doctors. Don't give up. I know it's hard. I know it's hard and you get appointment fatigue, but don't give up.

Also try to find another community of people who are going through what you're going through. There's an organization to support you to stop that isolation.

Steve Gregg: Well, your mother and father must have been amazing because as you struggle from a 12-year-old and then start talking about going to college, it must have scared them to death to think about what do college students typically do, how do they interact, first time out of the house, I can't actually watch you and see you every day anymore. Your parents must have really been instrumental in helping this journey. 

D’andre Hardy: Yes. So going to college, by the time I went to college, I was on biologics. So the disease calmed down a lot. Being a child who has a chronic illness makes you more responsible, just because you have to manage your body differently.

So now when I'm saying it, it sounds normal. But when I talk to other people, they're like, that's not normal. So people remind me that this isn't normal. But, you know, having to manage my appointments, I knew how to make sure that, like, I had to call a nurse and they had to come set up and do my Remicade in my dorm or do it in my apartment when I moved to an apartment.

And so those were kind of things that were just a part of it, my routine because they had been for so long. I think it would have been scary if I was diagnosed like my senior year of high school. I don't think it for me it wouldn't have been possible to leave and go to college. So I went to college about 3 and a half hours away, so I went to the University of North Texas, which is in the Dallas area, so I still had access to really, to health care, I was still on my mom's insurance. But I remember the lifestyle piece was hard because I'm still young. I still want to do what my friends want to do. I still want to, you know, you eat, you eat pizza and you stay up to two o'clock in the morning, and like, if you remember the college days, like, you know, so I didn't take good care of myself. And that's another reason why I was so sick in college. Also just the stress of dealing with things. So I was hospitalized the most when I was in college. And I had to learn how to navigate. Getting a, like, withdrawal or an I on my work or just pushing through and, like, getting my work turned in, it was just different.

And I also remember when I was picking out my housing, I tried to get an accommodation for having Crohn's disease, and at that time, it wasn't really known about, so it wasn't considered a disability, so, people did not understand why I had so much stress and anxiety over having a shared restroom. So that was a painful experience.

But in that moment, I'm like, “Well, I really want to go to college.” So I just pushed through it. After college, part of my the beginning of my career up until a couple years ago, I worked on college campuses because I decided to be the person that I needed. So I started working in college, academic advising and student retention work and trying to build inclusive practices for students because I felt like there were a lot of pivotal moments for me that I didn't have that, and so that was a full-circle moment. 

And then the next really big thing is when I had to learn how to navigate health care on my own. And so I don't think people understand that when you have an invisible illness, it affects every part of your identity.

So a lot of the professional choices I made, like, my career choice I made to work at colleges because people could not deny you, you know, insurance. I have state insurance. So I'd always have access to pretty decent health care. That was one of the other main reasons why I chose that career. And I don't think people understand that, who are not chronically ill, understand that a lot of pivotal decisions are affected by navigating an illness.

Bruce Kassover: You mentioned the stress and the anxiety and the isolation, and a lot of that sounds like depression, and depression itself is an invisible illness. But I'm wondering, for the people you deal with who have other illnesses, how significant the component of their general, you know, health and well being is depression also?

D’andre Hardy: Yes, so one of the things I recognize is, I was in survival mode because I had to navigate so much with having this illness and being so sick. I was in survival mode of just like, just getting it done, just push through it. I didn't realize that I had like high functioning anxiety, high functioning depression, because it shows up differently in Black women.

And so no one ever talked to me about depression because I was still just going through the motions, just getting it done. But a lot of the people who I talked to who have invisible illnesses, who are navigating chronic illnesses do have depression, do have anxiety because of the weight of dealing with all of that.

It can just be exhausting. So even trying to set up appointments for next year, it's something that I do, but it has taken so much time because I have a hematologist, I have a chronic illness dermatologist because I had the skin issues, I have my gastroenterologist, I have my OBGYN, I have… so I'm like, Okay, this is too… this is a job in and of itself. And so it can get very heavy and dealing with all of these different components that your life is affected by. So depression definitely plays a factor. I realized I had high functioning anxiety and depression. I realized I was operating in survival mode just from having a good support system and people who were like, “It's not normal for you to function the way that you're doing and we're concerned about you and you need to get help.”

And so I got help, and so I've learned how to manage it. I'm learning how to manage it more. That's part of the reason why, for me, exercise is a big piece of it of, you know, going boxing and doing that because that's how I could get my anxiety out and also take care of my body. But I would say one of the things I do, especially when I'm talking to other women or people with invisible illnesses, I say, like, you have to focus on your mental health.

Because this is depressing, knowing that you're, just knowing that you're sick and there's never going to be a cure in the foreseeable future is depressing. And so you have to focus on your mental health and do what you need to do for you to be good for your mental health, to be good and for you to be emotionally and mentally okay to be able to still even pay attention to the physical.

And one of the things I talk about are the people. Like you need in your support system to do that. So I always talk about having an alternate advocate because you get fatigued. And so there are times where my husband, I'm like, “You have to come to this appointment with me because I don't even want to talk to these people.” I know I'm sick. You just don't want to talk to them. And so having a trusted – in college, it was my best friend – so having people who can come to the appointment with you and talk to you and talk on your behalf and help you manage some of it because it's too much for one person. 

Steve Gregg: I can only say how amazing you are. Let's shift just a tiny bit. And one of the things when you and I met and we started talking about this and you were very generous in your opinions, could you talk a little bit about the challenges that may be unique and different because you're a Black woman versus what we traditionally in the health care system just think about everybody's the same and we know not everybody's the same.

D’andre Hardy: Thank you, and Steve, I have to say, for those listening, I sat down by Steve at a conference. We introduced ourselves, and then we just we were sitting in a conference about health equity. So we started talking about these different experiences that I've had as a Black woman in health care and how we can make health care more inclusive of different identities. And so we just had a very candid conversation for two people who didn't know each other, but it was a good conversation. So thank you for asking me that. 

I would say that when I first was diagnosed, I didn't understand what health equity meant because I was 12 and at the military base, everyone has the same type of access to the hospital. Like, you don't pay for medication. So it didn't hit me until after I graduated and was off my parents’ insurance, what it felt like. And then it was a ton of bricks. So for me, having doctors, it was a struggle once I was on my own and I didn't have military insurance. It was a struggle to find doctors who believed the severity of what I was going through.

It was a struggle to find doctors and I attribute it to me being a Black woman because one, it took a long time for me to find diverse doctors, especially in the GI space at that time. So we're still talking about maybe 12 years ago. Then also it took a while for me to be comfortable to even talk about what I was going through because I felt like there are a lot of Black women and women of color who, you know, historically how the medical field has impacted Black and brown communities, and it hasn't always been the best. So, you know, the stories about the Tuskegee Airmen, you know these stories, and so you want, you approach it with caution. Then there, it feels like they're speaking a whole different language sometimes. And then you feel like there are people who don't believe how in pain you are.

So, for example, and I think the worst experience was when I've had hidradenitis. So part of that disease is when your, like, skin cells are inflamed and under your skin that they can have these painful tunnels. And so what you have to do is, sometimes, people have to get down to the skin follicle cut out, and it has to re-heal. 

When that happened to me, I had to get a lot of it cut out, probably a month after I had my daughter and I had a C section. So you can imagine having a high risk pregnancy, I wasn't treated the best during my labor experience. I had some issues there. I had doctors who I just felt like the psychological safety wasn't there. 

There were doctors who kept asking my husband, was he my child's father? There were doctors who kept asking us if we were married. So it really bothered me. So I just already was at a heightened state of worry. We know Black women have maternal, a high maternal death experience. I had a, when I had a high risk pregnancy, so after that, dealing with the skin issues, having to have such a major surgery, I had to have the whole like inner part of my thigh was cut out and it had to heal back together. I had to go to a plastic surgeon and I had a great dermatologist who's absolutely amazing. I go to UNC Healthcare for my GI and dermatology for these conditions and they're great. I had a plastic surgeon who I had to go to manage the healing process.

I was in so much pain because I could, like, barely walk. And I even though I told them I do not care about the scars, I just cannot handle any more pain. I had, and I went through, I've had an ostomy, had a C section, like, it's okay, I have scars, like, I don't care about the scars. The plastic surgeon still insisted on me doing wet-to-dry healing. So, what that is, is you have this wound, and you have, you put like this wet part over it, and then every couple hours, you have to take that wet part off and reseal it until the skin comes back together, like heals back together. So you can imagine how painful this is on raw skin. 

So I started developing anxiety attacks. I was mean to my family, like, anytime I had to change this, these bandages, was having a full on panic attack. So I told her “I can't do this.” I talked to my dermatologist. I can use sterile Vaseline. I don't care about the wounds. She looks at me and she says, “I treat women who are healing from mastectomies. If they can do it, you can do it.” And I just broke down. People know me as a fighter. You all see me and you know me, like, you've heard my story. I'm a resilient person. I had nothing after that experience. And so it's painful. I'm like, even when I think about it now, I start like having tears well up because my family really had to advocate for me.

And then even in that space, my husband as a Black man, you know, people came in here and asked me when he was advocating for me and obviously very upset. Any of you listening, if someone said that to your family member, you would be very upset. So, even as a Black man, people then came in and asked me about domestic violence in my home, or if I was experiencing that, because of how he was advocating for me. 

So, on top of having a doctor completely dismiss my pain, then I have an advocate for me, then you're trying to, like, stereotype my husband in a way, because he's advocating for his wife, like any person who loved their family member would do going through that situation.

So, I think that is an example of why there's mistrust and why culturally there's a disconnect and so that is one of the reasons why I'm very passionate about talking to medical professionals and talking to patients about how do we answer to medical professionals and people who are working in the health care industry?

We know you see it every day. We know you may be desensitized, but how do we enter spaces with humility and with some with a level of cultural awareness to know how to interact with people so that we can stop… we can start building trust. And then as a patient, how do we enter this space? What are the tools you need to be able to advocate for yourself or have someone who can help you advocate for yourself?

Steve Gregg: I think we owe you a big thanks for that honesty. And maybe if you could take just a second and talk about how a little organization like ours, you know, we reach a lot of folks with bladder and bowel issues. What can we do better to help someone on a journey that, honestly, may not be quite as strong as you are or may not have the support system that you have.

D’andre Hardy: I think, one, entering the space, entering a conversation with humility, with empathy, or just trying to listen, like listen to what they need and believe them. I think a lot of time patients want to be seen, like, I just want you to see me and believe me. And then we can go from there. So I think letting people know that you see them, letting people know that you may not understand everything they're going through, but you're in a, you want to be in a position to learn what you can do to improve.

And then when they share that with you, believe them, don't debate the data because their lived experience is, your lived experience is what's true. And so if they're talking to you about their lived experience, believe them and try to build a partnership of what can … these are, these are my resources, or these are the resources we have, how can our resources help you solve your challenges? And then I think, if we enter spaces like that more than just like, well, this is why we do this, trying to explain the behavior or trying to say, “Well, I wasn't a part of that, so I wasn't responsible for that owning that. This is what happened to you. This is how we can help you. Or this is what your challenges are. And this is how we can help you.” And just saying, “I believe you, I believe how hard it is. I believe how much pain you're in. I believe how frustrated you are. I believe how depressed you are,” and come from a space of partnership. I think goes a long way.

Like, had more doctors just said, “D’andre, I believe you,” had more people organizations and coworkers and bosses just said, “I believe you, let's talk about how we can make this work,” I think experiences would be different and people wouldn't be struggling so much by themselves and be so isolated. So that that would be my advice. I know it sounds simple, but in the moment it means so much when you feel like your world is crumbling around you. 

Steve Gregg: Well, I believe we need to do more, so I think we would agree with that. 

Bruce Kassover: We've been talking a lot about the emotional aspect of living with an invisible condition, but I don't want to ignore the practicalities of it as well because I think that just for, when it comes to just living your life, there's a lot of things that are, you know, really difficult to navigate. I'm wondering if maybe you could talk a little bit about things like the legal protections that are out there and, you know, you've, you've mentioned how work life is very difficult or can be very difficult when you have these sorts of challenges, so maybe give us a sense of what is available to people who are just trying to live their lives with their condition.

D’andre Hardy: So the first thing I would say is, practicality, you know, it takes a lot of planning. I'm not, I'm not going to sugarcoat and make it look like it's easy and make it sound like it's easy.

So practicality, it takes a lot of planning. There's a lot of appointments and they're just, found I had to learn to be okay with like the boundaries I had to make. So I'll have to get a certain level of sleep because I have chronic fatigue. You can have chronic fatigue as someone with Crohn's disease. So I had to, okay, have a boundary of how much rest I get. There's some things I can't go to because there's no restroom. So I have to always map out where restrooms are and if they're accessible, so restroom accessibility is a is a big deal for me. So, just knowing those types of things is one, so, if you have a different type of illness, you know, what your, like, your physical needs are, so from this building, I need it to have X, Y, Z, in order for me to manage. Whatever may be going on from a diet perspective. I have to have X, Y, Z… So that takes a toll in and of itself. 

For navigating work, I know that HR, people are still nervous about going to HR, because it is, sometimes there are perceptions that, oh, HR is just is a function of the organization, and if I tell HR this, then I don't have these protections. So I always tell people to work with – I know everyone doesn't have access to a lawyer – and so I tell people to work with their physician to start a documentation trail. So, if you're worried about work, you need an accommodation, start with documenting it with your physician, because, of course, your information is protected by HIPAA, but at least you're not going into the conversation at work just with no paperwork, and you're just disclosing something and you don't have protection there.

So, that's the first thing, is making sure you have the documentation from the physician. If a physician doesn't believe you, or doesn’t want to give you that documentation, then making sure you try to find another physician – and I know that can be disheartening – or look up organizations like, I know for a gastric and Crohn's disease, that the Color of Crohn's and Colitis helps people navigate, like, that paperwork, the disability process, all of that. So looking up an organization or asking your physician, is there a research organization or some type of advocacy organization for this illness that I can use to help me manage this and move this forward? 

And I think other practicality pieces are, I've really had to define what was going to mean the most to me. So, for example, so I'm in the latter… people who know my personality, you know, they're like, “Oh, you could be a VP. You could do this. You could do that.” And I'm like, “I can, but what's important for me is for me to feel well for me to have a work life balance for me to be able to be mentally okay.” And right now, that is not, you know, this role or this other thing that other people may expect of me is not what's going to be the best for me.

So, practically, like, how that shows up every day is, there are intentional decisions I have to make to manage my body to keep myself healthy that I just don't feel like other people have to do, because I have to manage my energy in a different way because I have chronic fatigue because I haven't – it's an autoimmune disease, so I get sicker easily. So I have to… all of that is interconnected. So there's not one way I can, like, separate physically, tangibly, I'm doing this and then mentally I'm doing this. It's all interconnected. So I have to sit down and be clear with myself about what I can give energy to. I'm going to manage my body where I'm going to go to make sure that I stay healthy. 

Bruce Kassover: You just touched on something that, as an outsider, it sounds to me like you're, you're walking around living your life with this invisible backpack, and I'm wondering if you could talk a little bit about how you go about doing exactly what you said, which is figuring out what's right for you, the difference between settling and thriving. And I'm wondering if you could talk a little bit about how people can go about not settling and really living a life that they want to live, that they deserve to live, and that's really fulfilling. 

D’andre Hardy: So, settling, I think, is when you, or you're in your mind, you're telling yourself, okay, this is just, this is where I'm going to accept because there can't be any better. There's nothing better. I'm just going to accept it because I'm not going to get X, Y, Z. I think that's settling, or that's what I would define as settling, and I understand that sometimes that's a coping mechanism to help you be able to just survive. 

When you get to thriving, I think thriving is saying, this is what success means for me, these are the things that foster that. And so this is what I focus on. How you get to that point is different for everyone. I think for me, one, I could not get to that point until I was physically in remission. When I was not physically in remission, it was survival. It was day-to-day. I did not have capacity to think about five years from now, two weeks from now, even one week from now, even at the end of the week, because I had no idea what I was going to feel like and be able to do. So, I think, and if you're in a survival space, if you're still your, your disease is unmanageable, I think the main focus then is getting the disease manageable because the thriving comes when you have capacity to think long term.

And when you're in survival, you can't do that. Your brain is actually protecting you, like, you have to just focus on day-to-day. What I had to learn in thriving is that not to make decisions the way I would have when I was in survival mode. And so that's where it comes in to really work with other people and think about, so if we talk about work, what is my true value add?

What do I bring, you know, I bring to the table? But also, how does this organization work for me if I have to work? Well, how does this organization work for me and help bring an environment, create an environment for me to thrive as well. And so it's not just one sided, but I couldn't get to that point. So in thriving, or even thinking about, like, your doctor, like, “Okay, this is my doctor. This is the goal for my medication. Is my doctor okay with this goal? Do they work against this goal? Like, do they see my journey same way?” And when you're in survival, you're like, “I just want to help find somebody who's going to help me feel better.” 

So, I think the first thing is making sure that you're physically and mentally okay to be able to get to a point where you can think long-term and think about the full meaning of all of these pieces, but you don't have capacity to do that when you're not well.

So that's how I define thriving is figuring out, being able to own your story, being able to figure out and adjust to what success means to you and be okay with that. And that is success in your health, success mentally, success at work, like, being okay to define that and live in your own truth and then making sure that you just consistently pursue that, not no matter what, but being okay to stand and consistently pursuing that.

And so, for me, like, being able to thrive was being able to open the Seen Society and like, talk about that openly, but I also intentionally worked on finding an organization that embraces who I am, embraces my skill set and would not have retaliation for that. Some years ago, I would have never been able to be open about having an invisible illness, but I couldn't focus on that until I got my, I was able to be physically okay.

Bruce Kassover: It sounds like some pretty hard-earned wisdom, so I appreciate you sharing that. And you talked about how it led you to be the creator of the Seen Society. I'm wondering if you could tell us a little bit more about what the Seen Society does and how people can find you also. 

D’andre Hardy: So, the Seen Society offers coaching and professional development and workshop opportunities, learning opportunities for organizations who want to focus more on inclusive illnesses and build inclusive leadership practices.

We also offer one-on-one coaching for women who are navigating their career and want to identify what success means for them, be in a better organizational culture, or have a higher salary. And they're also navigating an invisible illness. So I do one-on-one coaching and group career coaching classes. I kicked off one yesterday and it went amazing, so I can't wait to see those women put everything into action and actually see their results. 

And then we offer intentional group gatherings for women who have – and leaders who want – to be inclusive leaders and women who have invisible illnesses to come together, learn about networking, learn about self care and leadership, learn about how to navigate healthcare and navigate having an illness in the workplace.

And it's just to say, I call it a safe space and a brave space. So a brave space for coming in and being able to sit in your truth and a safe space for people who are there who want to be more inclusive and who know you're going to want to network, and we're happy to help you reach your goals as well.

So that's what the Seen Society offers. You can find me at theseensociety.com is the website. I'm also on Instagram under the Seen Society, on TikTok under the Seen Society where I drop hints and tips about how you're navigating life with a chronic illness. And then I also volunteer as an ambassador for the Color of Crohn’s and Chronic Illness, which is an organization, a nonprofit that helps advocate for health equity for people with GI and intestinal diseases. So, if you have questions about any of those things again, you can send me a message through the website, you can email theseensociety@gmail.com, or you can send me a message through one of the social media platforms, and I'm happy to engage. And I'm always open to a discussion about partnerships as well.

Bruce Kassover: That's excellent. We're going to put links to all of these in the show notes. We're going to have a link to theseensociety.com. That's theseensociety.com. And we're going to have links to your social pages as well, so we definitely encourage anybody who's interested to check you out and see how they could benefit from everything you offer.

So, D’andre, I want to thank you for being a part of the podcast. We really do appreciate your candor and your story and most importantly, your drive to make something better for so many other people out there who would otherwise be, you know, really suffering in silence. So, so thank you for everything you do. And, you know, I'm sure that we can say thank you from all of those other people who you've been able to give guidance and support to. 

D’andre Hardy: Thank you. Thank you. I really appreciate being here and I look forward to continuing to work on the Seen Society, continuing partnerships and to help make a difference. So thank you so much.

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin MacLeod. More information about NAFC is available online at NAFC.org.