Podcast: Finding Strength & Unity in Our Differences
Listen to part one of the first ever LIVE Psych Central Show, recorded on location at HealtheVoices 2018, an annual event that brings together online advocates from across various health conditions for an opportunity to learn, share and connect. In this show, you will meet four advocates who join our hosts on stage for a panel discussion on a variety of advocacy issues, including lupus, inflammatory bowel disease, HIV, and breast cancer. You’ll hear about how being diagnosed affected their lives in ways they didn’t expect, and what made them become advocates. The second half of this show will be posted next week!
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LIVE Show Highlights:
“The shame and the stigma came from my family first before anybody else.” ~ Daniel Garza
[2:50] Meet Marisa Zeppieri, lupus advocate.
[4:00] Meet Rasheed Clarke, inflammatory bowel disease advocate.
[5:25] Meet Daniel Garza, HIV advocate.
[6:30] Meet Annmarie Otis, breast cancer advocate.
[8:45] Annmarie talks about breast cancer as the “popular” illness.
[12:19] The panelists tell how it felt being diagnosed and how it has impacted their lives.
[18:07] The panelists discuss what made them become advocates.
About Our Guests
Rasheed Clarke lives in Mississauga, Ontario, Canada, and works as a communications coordinator and freelance writer. In 2011, he published a book of short stories about living with ulcerative colitis titled, Three Tablets Twice Daily. Rasheed had his colon removed in 2013 as a result of the disease. He now lives with a pelvic pouch, and blogs about his experiences with it at www.rasheedclarke.com. Aside from discussing digestive diseases, he enjoys running, soccer, design, nature, and pizza.
Follow Rasheed on Twitter.
Daniel Garza has been an HIV advocate since 2001, sharing the basics of HIV along with his story at high schools, college and universities. He also educates through his podcast, Put It Together, and on social media pages, such as, HIV Positive Life on Facebook.
Follow Daniel on Facebook.
AnnMarie Otis parlayed a cancer diagnosis into an advocacy powerhouse, giving voice to people impacted by breast cancer, MS, and mental health issues. Since establishing the non-profit Stupid Dumb Breast Cancer organization in 2012, AnnMarie has worked tirelessly to engage the community through awareness programs and fundraising initiatives, and to ensure that everyone who suffers is heard. She currently serves as community manager for Wisdo.com.
Marisa Zeppieri is a health and food journalist and author, in addition to being the founder of LupusChick, an autoimmune community and nonprofit, and board member for The Lupus Foundation of America. LupusChick provides patients and their families support, educational materials and resources, and the nonprofit has awarded five partial college scholarships to students with lupus. She is the reigning Mrs. New York and works with government officials via her platform of Lupus awareness. May is officially Lupus Awareness Month. She lives in NY with her husband and rescued terrier, and enjoys food photography and aerial yoga.
Follow Marisa on Instagram.
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: [00:00:03] Welcome to the Psych Central Show, where each episode presents an in-depth look at issues from the field of psychology and mental health. With host Gabe Howard and co-host Vincent M. Wales.
Gabe Howard: [00:00:26] Welcome to the show, everyone, my name is Gabe Howard, and with me as always is Vincent M. Wales and we are proud to be live at a HealtheVoices 2018.
Vincent M. Wales: [00:00:39] HealtheVoices 2018 is a first of its kind three-day event that brings together online advocates from across various health conditions for an opportunity to learn, share and connect. Sponsored by Janssen Pharmaceuticals, a Johnson & Johnson Company, the conference seeks to provide valuable content such as tips to further engage and grow an audience, thought provoking conversation, and networking opportunities for online health advocates.
Gabe Howard: [00:01:05] Did that cover it, Janssen? Are we good? The lawyers happy? Excellent. And we are joined today by four incredible panelists. Them.
Gabe Howard: [00:01:23] Listen, we operate primarily in the mental health space. The Psych Central Show is primarily a podcast for people living with mental illness, people who want to learn about psychology. And as a person who lives with bipolar disorder, I face a lot of adversity. I’m discriminated against because national news stories paint people living with mental illness as violent or responsible for, you know, just everything. And I believe that as a patient, I was being ignored because of the mental illness. As recently as a year ago, I believe that society, doctors, and the general medical establishment were stigmatizing me for that reason and that reason alone. Last year was my first year coming to HealtheVoices 2017, and I learned two very important things. One, I was not alone. It turns out that everybody living with chronic illnesses feels disenfranchised, afraid, and that they just need help. We needed a community, a community that I found at HealtheVoices. I also learned, unfortunately, that the grass wasn’t greener on the other side. I genuinely believe that you all had it good and I had it badly. I found a community. Yea, we’re all ignored. And that’s why we wanted to put this panel together. We wanted to discuss the things that we have in common rather than the things that are the differences.
Vincent M. Wales: [00:02:42] The real reason Gabe felt alienated was because he’s a ginger.
[00:02:45] And a giant.
[00:02:49] That’s rare.
Vincent M. Wales: [00:02:51] All right. First up, we have Marisa Zeppieri, and she advocates for the lupus community. And Marisa, why don’t you tell us a little bit about yourself?
Marisa Zeppieri: [00:02:59] Hi, everyone. Thanks for having me here. My name is Marissa. I, like many people that I’ve spoken to at the conference, I really had health issues since I was a child and we didn’t really have a diagnosis at all. Back in the 70s and 80s, they didn’t test for lupus very often. And everything kind of came to a head when I in turned 23. I actually got hit and run by a drunk driver as a pedestrian. and I spent about a year in recovery. And it was during that time that was sort of my trigger, all the symptoms that I had had growing up came out at once. And then I was diagnosed with systemic lupus. So, I’ve been in journalism and broadcasting for about 10 years and I also started LupusChick around the same time. It started as a blog, and today we’re a non-profit. One of our biggest initiatives that I love, we have a college scholarship program. We’ve given out five college scholarships to women in the United States with lupus and we reach about a half a million people a month.
Gabe Howard: [00:03:58] Thank you so much for being here. Next up is Rasheed Clarke, who is an influencer in the inflammatory bowel disease space. Welcome, and please tell us about yourself.
Rasheed Clarke: [00:04:08] Thank you, Gabe. And thank you, everyone, for having me here. Also, former broadcaster. So I guess that’s maybe why we were invited up here. So hopefully what I remember from broadcasting still rings true. I was diagnosed with ulcerative colitis, a form of inflammatory bowel disease in 2008. And at the time that I was experiencing symptoms and at the time of my diagnosis, I had never heard of either of those terms. And that was one of the biggest challenges for me, was to try to get other people to understand just what I was going through because I had to understand it myself. And at the time I was at the University of Toronto, I was in a professional writing program, and I was lucky enough to be able to structure a lot of my assignments on writing about ulcerative colitis and living with inflammatory bowel disease. And I ended up turning that into a book of short stories that was published in 2011. And things got really bad for my health after that. So I actually had a lot more material after the book was published. And that’s when I took to the online space and started writing about my experience having surgery, having my colon removed, living with an ostomy for nine months, and for the last four years, living with something called a pelvic pouch, which has been very good to me. And I’m very grateful for that. And again, just grateful to be here.
Vincent M. Wales: [00:05:20] Thank you for being here, Rasheed. Next up is Daniel Garza and he advocates in the HIV community and the colostomy community as well.
Daniel Garza: [00:05:31] Well, good morning, everybody. Thank you for having me. Thank you, guys. My name is Daniel Garza. I am an HIV advocate. I was diagnosed with AIDS actually when I was about to turn 30 in September of 2000. So I’m 17 years into it. A couple of years ago in 2015, I was diagnosed with anal cancer. Two years later, I had my stoma surgery. And other than that, I am a public speaker. My specialty is in education. So I go to high schools, colleges, universities and talk about a HIV prevention, sharing my story, along with the cancer side of it. I’m also host of a podcast, so I’m going to guess like Rasheed, there’s a reason why we’re here, because we can talk on a microphone.
Gabe Howard: [00:06:19] You’re mostly here because you agreed to do it.
Daniel Garza: [00:06:23] It’s always the end of the list for me, yeah.
Gabe Howard: [00:06:25] Thank you so much for being here. And last but certainly not least, the well-known, the beautiful, the exceptional, and who also agreed to be here as long as I read that exactly, breast cancer survivor and advocate AnnMarie Otis. AnnMarie, please tell us about yourself.
AnnMarie Otis: [00:06:41] Thank you, Gabe. As they were saying, they’re reporters, and he does whatever, I thought in my head, well, I don’t do any of that, and so I don’t know why I’m here. I was diagnosed with breast cancer and I decided to turn that diagnosis into advocacy the only way I knew how, and that was was by being loud and uncensored and very raw. And it worked. I started a blog mainly because my family is extremely nosy and I didn’t want to answer all their phone calls. And all of a sudden I was getting a response from people all over the country and they were connecting with me. And it wasn’t because of my spelling. So I pushed it even farther. And I’m very, very proud of that. I’ve shared a photographic journal of my cancer process and it was very revealing and it took me down to my raw uncensored self, and I’m very proud of that. Since then, I advocate for M.S. because hey, if you can have breast cancer, why not get M.S. too? If my life didn’t suck worse. So I have that. And I also started a not for profit where in my local community I give back to all cancer patients in a financial way. I help pay for gas cards to get them to treatment. I pay for their parking. We have even paid mortgages. We paid for pet care. Just giving back in ways that insurance cannot do. And I advocate for mental health as well, so I’m very happy to be on this panel. And thank you, Gabe, I will give you your stipend later on.
Vincent M. Wales: [00:08:11] Thanks, AnnMarie. And to all of you for being here and being willing to be open and honest with the grilling we’re about to give you. And also, again, thanks to HealtheVoices for allowing this to happen.
Gabe Howard: [00:08:24] Really? Come on. And they agreed to be here. Bigger, bigger. Slightly less, Michelle.
AnnMarie Otis: [00:08:35] Yeah. Don’t give her any more sugar.
Gabe Howard: [00:08:40] It’s the coffee, I think. AnnMarie, we want to hit the ground running and we want to ask a tough question. As you know, I’m a mental health influencer, and I see massive amounts of money, just massive amounts of money that breast cancer raises. And it makes me incredibly jealous. I feel that your life must be easier. Must, I’m underlining must. It must be easier because there are times of the year that I can’t leave my house without seeing everything pink for breast cancer. What are your thoughts on this? And please talk a little bit about life being easier, because after all, you have a popular illness.
AnnMarie Otis: [00:09:13] I do. I have a marketable illness. So first, let me say that before I was diagnosed with breast cancer, I bought into the hold, save second base and save the ta-tas bullcrap. And I realized quickly when I was diagnosed that it isn’t about saving the boobies, it’s about saving the person. When you see all that pink crap that’s going around during Breast Cancer Awareness Month, it is literally pink crap. You are just buying something that is pink. That product that you’re purchasing gives approximately 1 percent of funding to some cancer organization. They do not give back. So while you see that, I look at it as marketing. You took my cancer, society and marketers, and you sold it and it pisses me off. I do not buy into that. It makes me highly upset. I also take it to the part that it’s sexualization. When you Google, and I advise you all to do that during Breast Cancer Awareness Month, type in breast cancer on Instagram, you will see nothing but sexualization of breast cancer. There is no awareness, there is no education in it. And that is a huge problem. Massive, because having your breast amputated is nothing sexy. Trust me. And the last part to that is factual. One hundred and thirty eight people today in the country will die from breast cancer. That is not pretty. That is not pink. That is real. The bigger fact to this is I now have a one in three chance of a reoccurrence of becoming metastatic. So while I did buy into that to begin with, it is farther from the truth.
Gabe Howard: [00:10:59] AnnMarie, thank you so much for your candor, and an obviously I bought into it as well, and without coming to HealtheVoices and without meeting you, I’d still be buying into it. Still to this very day. And I’d be jealous of you because after all, I’m sicker than you. And that’s the kind of thinking that we’re trying to avoid in our society.
AnnMarie Otis: [00:11:16] Well, maybe so.
Gabe Howard: [00:11:17] Hey, thanks for educating me. It happens all the time.
Announcer: [00:11:23] This episode is sponsored by BetterHelp.com. Secure, convenient and affordable online counselling. All counsellors are licensed accredited professionals. Anything you share is confidential. Schedule secure video or phone sessions, plus chat and text with your therapist whenever you feel it’s needed. A month of online therapy often costs less than a single traditional face to face session. Go to BetterHelp.com/PsychCentraland experience seven days of free therapy to see if online counselling is right for you. BetterHelp.com/PsychCentral.
Vincent M. Wales: [00:11:54] Ok, so thank you again. And what we’re gonna be doing now is sort of a freeform sort of questioning. Many of the questions that we’re about to ask came from all of you. Thank you for filling out the cards. Any of you, or all of you, can answer any of these and just let us know who wants to go first. So the first question that we have is how did it feel when you were diagnosed? And what impact did it have on your life?
Rasheed Clarke: [00:12:26] Can I go first because no one else is saying anything?
Vincent M. Wales: [00:12:27] You sure can.
Rasheed Clarke: [00:12:28] As I think as I mentioned first at the top of my intro, I just felt, more than anything, confused by what I was now diagnosed with. Because at the time, I had done all the things that you’re supposed to do to not get sick, you know, eating well, exercising, not having any vices, at least not too many of them. And yet you still get sick and you still get a chronic disease. And it was hard to make sense of that. And I think for me, having something like inflammatory bowel disease where there weren’t a whole lot of answers about what actually causes it, my first thought was, what did I do? And I had a lot of feelings of guilt for the first several years. And I think I still kind of grapple with it today and wondering just what was it that I did to bring this disease on myself? And there really isn’t an answer for that because we don’t know. And I tried to tell myself not to feel guilty about it. Because had I known don’t eat this, do drink that, don’t do this, don’t do that, then I would have not done those things or I would have done those things to prevent the illness in the first place. But the lack of understanding about the disease, not just in the general public, but from the people who treat the disease itself, was one of the most frustrating things when I was first diagnosed.
AnnMarie Otis: [00:13:44] It’s are you people gonna make me go again?
Daniel Garza: [00:13:46] Oh, I’ll go if you want me to.
AnnMarie Otis: [00:13:47] I’ll go. So when I was first diagnosed with one of my illnesses, with breast cancer, the hardest thing was telling my kids. I really felt like I was ripping their innocence away from them. It was the worst thing I ever had to say to my children. And actually, my son wrote a blog post about it and he felt as though I lied to him. And that was very hard, and I still can’t talk about it because like my kids, it’s something that I would never have done. And I hate cancer made me do that.
Gabe Howard: [00:14:25] Thank you so much, AnnMarie.
Daniel Garza: [00:14:30] Well, mine is, I guess, a two parter that when I was diagnosed with AIDS, I was 108 pounds, 110 pounds and my T-cells were about the same number. I was in some sort of denial. I had an idea. I knew my life. I was a drug addict, an alcoholic, I had unprotected sex, I didn’t know my partners. So I was in a sort of denial, like, OK, so I have AIDS. I’ll be fine. Cool. My I guess people who know me very well, in my form, my only concern was because my hair was falling out will my hair grow back, and I couldn’t walk. So can I walk again? And that was my question to the doctors. Is my hair coming back? And the doctor was like, yes, but do you realize you have AIDS? I’m like, that’s fine, but can I walk out of here? And the doctor’s like, yeah, but are you listening? You have AIDS. I’m like, there’s medications, I’ll be fine. I’m OK. I’m good. Not realizing that I was too skinny to take care of myself. And ultimately, it took me about six months to finally somewhat recover. But I think now, I think back, I think that’s what helped me overcome that initial diagnosis, is not really falling prey to it and being a little vain and wanting my hair back. When I was diagnosed with cancer, this was about 15 years later after AIDS. Cancer, again, I kind of had an idea that was what’s going on. So on the way home from the doctor, I looked at my boyfriend, Christian, as he was driving, I go, you know, you realize when I get home, I’m video blogging about this. And he was like, well, of course you are. You’re Daniel. I’m like yeah. So my bit, it lasted 30 days because after that, I just couldn’t do it anymore. But I started blogging and I realized again, AIDS taught me to be resilient and share my story and not be ashamed of what was going on. And anal cancer just kind of reinforced that. And I figured if I’m going to be the butt of any jokes, I’m going to start those. And yes, that was a bad joke.
Gabe Howard: [00:16:39] Thank you so much. Marissa?
Marisa Zeppieri: [00:16:41] So I remember when I was diagnosed, I was actually relieved. Because I’d been sick for so long and I had no idea what was going on with all these different symptoms. But that quickly turned into, I say shame, ashamed and somewhat angry. Because at the time, a lot of lupus patients are diagnosed in their childbearing years. So I was actually just about to finish nursing school and I had worked really hard for that. And my entire life changed. I had become like hospital bound and then wheelchair bound and I had a couple of strokes. And next thing I know, I had a nurse at my house helping me eat and take a shower. Luckily, I had an amazing family, amazing husband who’s actually here with me. And that’s why everyone in this room is so important, because I thought how many people don’t have that support at that initial time of diagnosis? And your whole world is turned upside down and you have to find this new normal and maybe you to find a new career or you have to move? Maybe you can’t be in a two story house any longer or what not. So that was one of the reasons I started LupusChick and why I’m really excited about HealthyeVoices and I’m thankful for everyone that that, you know, does advocate for a disease. Because it is in that moment, when your entire life changes, that you need people around you to help you.
Gabe Howard: [00:18:01] Thank you all so much. And the next question that we have, also from the audience, and we’re going to change directions a little bit. It says many people live with illnesses and many people are diagnosed with scary illnesses, long term illnesses, terminal illnesses, but most don’t become advocates. What made all of you become advocates? AnnMarie? Daniel?
Daniel Garza: [00:18:24] Ok. Well, I think what made me, especially with AIDS, what made me become an advocate was when I was. I’m from Texas and my I’m first generation. So my parents don’t speak English and don’t really understand. And my family being, we’re Catholic, very conservative, never talked about sex. So when I was diagnosed, I started volunteering at the agency where I received services and my family was very much against it. I’ll put it this way, when I had to move from Houston to my sister’s house, I was given the maid’s room basically. Away from the family. I had my own sheets, my own towels, my own silverware, plates because they couldn’t touch feels Tio’s stuff. Don’t touch it because you might get sick. And it bothered me. The shame and the stigma came from my family first before anybody else. So I thought if I need to teach anybody about HIV and AIDS, it’s my family first. And what I would do is I would bring pamphlets in Spanish from the agency and put them on the magnets in the refrigerator, or I would put them by the microwave, or I would leave them in the bathroom. Just where everybody could find them and read them. Finally, about three months and they read them. And we would have a luncheon at the agency every Friday for families and allies. And finally, my sister showed up one day, she surprised me. So I realized then that I had advocated for myself to my family and I opened a door. And again, if you know me, all I need is an open door and I’m running in. And 18 years later, I’m here with you guys and I’m still talking.
Vincent M. Wales: [00:20:11] And we’re glad you are. Thank you.
AnnMarie Otis: [00:20:16] So I guess for me, I was it was the night before my mastectomy. And I have like awesome doctors. They really advocated for me. I had a couple of misdiagnoses and they’re awesome. But doctors only have a couple, 15, 20 minutes with you and they really don’t provide you with the information that you need. And they told me I was going to have these drains and I just kind of was like, okay, I and have drains. And then about 2:00 a.m. before my surgery, I thought, what the hell is a drain? So I decided to Google that. Don’t Google things the night before anything. And I lost it. I was in tears. I was sobbing. I didn’t know what was gonna happen to me. And I thought in my head, I know what I need to do now. I literally at that moment thought all of this needs to be documented. Other people need to understand that. Because what we do, we take scary out of it for the next person going through this. And I thought there is someone just like me sitting somewhere petrified of what’s about to happen to them, and they need to see this. They need to understand that a drain is not some drawn picture in a pamphlet that my doctor is handing to me. They need to see it. They need to understand what’s going to happen through chemo and radiation and that on day five, you should be doing this. And I really wanted to do that and give back. And I will tell you that I did sit my whole family down and explain what I was going to do, because, you know, I have teenagers and they’re boys and I was about to let it all out, and they supported me. And I was so proud of them for doing that. And they stand by it. They’re advocates with me, and it just makes it even better and it makes it even more important to me.
Vincent M. Wales: [00:21:47] Thank you.
Marisa Zeppieri: [00:21:53] I think for me, when I was diagnosed, I had never met anyone in person that had lupus and my family had never heard of it. And I actually wound up meeting one girl within three years that had it at the time. But I went to the library and I went to Barnes & Noble and there was only one book for lupus. This was 17 years ago. And it was a medical, like completely medical based book, which was OK for me because I had the nursing background. But what about if someone didn’t have that? And, you know, there wasn’t a lot of information online. So even though now I knew what lupus was and what medications were available for it, I didn’t have the social information or the mental information as far as, you know, what happens when your friends stop calling you because they don’t understand that you can’t hang out with them all the time? How do I explain to my family that I can’t be out in the sun because it actually can put me in the hospital? And we lived in Fort Lauderdale at the time. So there weren’t answers for these things. You know, how do you date when you have a chronic illness? So I love to write, which is why I wound up in journalism, I suppose. And I figured, OK, I’m going to take this on myself. And that’s how it started.
Vincent M. Wales: [00:22:59] Thank you very much. Rasheed?
Rasheed Clarke: [00:23:02] Now, for me, I am not entirely comfortable with the term advocate, and I think it’s probably because I feel somewhat undeserving of that title. Because for me, when I started writing, number one, it was school assignments and I just wanted good grades. Number two, I was trying to make sense of the disease for myself. And number three, I was writing about myself because I’m an only child and I’m narcissistic. So I love stories about me. And that was what kind of got me started and all of this. And I honestly don’t really see myself very much as an advocate, just as someone who enjoys stories. And I’m better now because I don’t just tell stories about me. I do actually, you know, try to find other people who have IBD. I try to share their stories. I try to write stories about them, and I try to share stories within our community, because I think that’s incredibly helpful to people who are diagnosed, to just even if you’re not going to get a chance to meet someone face to face, as I’ve had the privilege of doing now with many of IBD advocates here. Just having those stories out there is helpful to know what what the disease is like. And for me, I kind of went into the same maybe sort of a mindset as Daniel at the beginning. That OK, I got this chronic disease, but I’ll just take some medication and everything will be fine. So it’s not a big deal. But when things really started to go awry in my health, that’s when the storytelling really helped because I wanted to let people know this is serious. This is a disease that people should know more about. I should know more about, because I didn’t think that I’d be losing my colon in my late 20s. And just having those stories out there was just important for me to make sense of things for myself. And the storytelling has always been a big part of what I do. It’s just something I enjoy. And that’s why I’m maybe not the best advocate out there as some other folks. But I just like to to share the stories because I think it’s important.
Vincent M. Wales: [00:25:02] Thank you. Advocacy does take many forms, Rasheed. So we’re on your side there.
Gabe Howard: [00:25:10] Thank you, everyone, for listening to part one of two. You can catch part two next week. And remember, you can get one week of free, convenient, affordable, private online counselling anytime, anywhere by visiting BetterHelp.com/PsychCentral. See you next week for part two.
Announcer: [00:25:26] Thank you for listening to the Psych Central Show. Please rate, review, and subscribe on i-Tunes, or wherever you found this podcast. We encourage you to share our show on social media and with friends and family. Previous episodes can be found at PsychCentral.com/Show. PsychCentral.com is the Internet’s oldest and largest independent mental health web site. Psych Central is overseen by Dr. John Grohol, a mental health expert and one of the pioneering leaders in online mental health. Our host, Gabe Howard, is an award winning writer and speaker who travels nationally. You can find more information on Gabe at gabehoward.com. Our co-host, Vincent M. Wales, is a trained suicide prevention crisis counsellor and author of several award-winning speculative fiction novels. You can learn more about Vincent at VincentMWales.com. If you have feedback about the show, please email [email protected]
About The Psych Central Show Hosts
Gabe Howard is an award-winning writer and speaker who lives with bipolar and anxiety disorders. In addition to hosting The Psych Central Show, Gabe is an associate editor for PsychCentral.com. He also runs an online Facebook community, The Positive Depression/Bipolar Happy Place, and invites you to join. To work with Gabe, please visit his website, gabehoward.com.
Vincent M. Wales is a former suicide prevention counselor who lives with persistent depressive disorder. In addition to co-hosting The Psych Central Show, Vincent is the author of several award-winning novels and the creator of costumed hero Dynamistress. Visit his websites at www.vincentmwales.com.
Central Podcast, T. (2020). Podcast: Finding Strength & Unity in Our Differences. Psych Central. Retrieved on August 5, 2020, from https://psychcentral.com/blog/podcast-finding-strength-unity-in-our-differences/