Episode #127: Ilana Jacqueline
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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Like many women with chronic illness, author and patient advocate Ilana Jacqueline experienced medical gaslighting from a young age.
While struggling to even make it to school, Ilana saw many doctors. Thankfully, her mom was in her corner, advocating for her, finding new doctors, and even advocating for the rare disease community through her role as a TV producer.
It wasn’t until age 19 that a doctor took enough interest to figure things out, diagnosing Ilana with Hypogammaglobulinemia, a rare immunodeficiency. But diagnosis didn’t end her struggles in the medical system. On top of navigating young adulthood with an invisible illness, Ilana faced many doctors who couldn’t help and didn’t seem to want to. She became increasingly aware that some doctors had no interest in helping her figure out her treatment; they wanted to make her feel like she was exaggerating and worrying too much. They wanted to shame her out of seeking care.
At age 30, Ilana finally found an immunologist who believed her and truly wanted to take care of her. Ilana has devoted her career to patient advocacy and community building. In addition to her patient advocacy work for companies and organizations, Ilana uses public speaking, social media, and her writing to connect with patients and teach them how to survive with chronic illness, and spot and combat the deadly medical gaslighting.
Her first book, Surviving and Thriving with an Invisible Chronic Illness, will soon be followed up by Medical Gaslighting: A Guide to Help You Recognize It, Prevent It, and Fight For Your Life. The new book will include stories from many different women, to highlight how widespread the issue of medical gaslighting is. If you have experienced medical gaslighting, you’re not alone, and Ilana is in your corner.
“We are at war. You are fighting for your life against medical gaslighting. The consequence of being ignored when it comes to your health concerns isn’t just that you’re made to feel crazy. You can die. Many women have died.”
Reasons To Listen:
Learn the signs of medical gaslighting, how prevalent it is among women, and how important it is to combat.
Hear how Ilana is channeling her challenges and negative experiences into patient advocacy through her work, social media and published books.
Learn the value of family, partners, and school staff who advocate for you in the face of so much misunderstanding and judgment.
Hear how Ilana is helping to shatter the misconception that patients “want to be sick”
Be reminded of how powerful it is for people to be vulnerable and share their stories in order to empower others.
About Ilana
Ilana Jacqueline is a patient, an advocate, an author, and an educator on the topic of medical gaslighting. She is the author of the book Surviving and Thriving with an Invisible Chronic Illness (New Harbinger 2018). She is a patient advocacy strategist, working to humanize rare disease and women's health through new media.
Click here if you have a medical gaslighting story you’d like to share with Ilana for consideration in her book
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Harper Spero (00:04):
Made visible helps people with invisible illnesses feel seen and heard. It provides a platform for people who seem fine but aren't to share their experiences. It also helps to create a new awareness of how we can be sensitive and supportive to those with invisible illnesses.
Harper Spero (00:26):
Please note this podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a license or registered healthcare professional about your individual condition and circumstance. Hey guys, welcome to another episode of Made Visible. I'm your host Harper Spero and I'm so glad you tuned in. Today's guest is someone I've been following on Instagram for a while and was honored to have her join the Immune Deficiency Foundation at our annual conference where she was a keynote speaker last year. Alana Jacquelyn is a patient advocacy strategist working to humanize rare disease and women's health through new media. Welcome Ilana Jacqueline. So happy to have you here today.
Ilana Jacqueline (01:11):
Thank you. Happy to be here.
Harper Spero (01:13):
So let's start off, tell up the listeners who you are, where you're from, and what you do.
Ilana Jacqueline (01:19):
I'm Ilana Jacqueline. I am a patient advocate and an author of the book Surviving and Thriving with an Invisible Chronic Illness and the upcoming book about medical gaslighting. And I am from the Portland, Oregon metro area.
Harper Spero (01:32):
Can't wait to dig into the book stuff, but let's go back a little bit. You searched for a diagnosis for 19 years. How and where did that begin and how did you get to that diagnosis?
Ilana Jacqueline (01:44):
Buckle up <laugh>. No actually it's, it's, it's funny. It's very similar to your story. So while it feels like a lifetime to wait to 19 to get a diagnosis, now that I'm in my thirties, I realize that I was just a toddler with a driver's license until I was 29. But growing up I was living with a lot of symptoms that really went unchecked. I was your stereotypical sick kid, always had something sinus infections, bronchitis, stomach problems, and I was never able to recover from those illnesses without major intervention. And even when I did the next infection was always just right around the corner. And my mom, you know, she would take me to the doctor to different pediatric specialist. We would see allergist and pulmonologist. But at the end of the day, no one really worked me up the way that I clearly needed to be worked up.
(02:30):
And by the time I turned 18, I was physically very burnt out and I ended up spending my first year of college staying home and just going to specialists and chasing a diagnosis that I wasn't really sure I was gonna find. And I was starting to think I was either a crazy or just a weak person and I might be both in the end. But I was also someone living with primary immune deficiency disease or hypo gammaglobulin anemia. And that diagnosis ended up coming from an infectious disease doctor not long after I turned 19. And it really did change everything about my life and the way that I saw myself
Harper Spero (03:04):
So relatable, know it Well how did you get to that doctor and what was that test?
Ilana Jacqueline (03:09):
I got to that doctor via my stepdad and the synagogue that he attends. So he went there to openly pray for me and out of the blue, an infectious disease doctor is there and shul and says, you know, bring her in. Let me see what I can do. Honestly, by the time that we got to that appointment, I was so unwell I was being carried into that office by my mother and my stepfather and I was really reluctant to go because I had been gaslit so much at this point that I was not into it. But this doctor was great. He spent an hour taking my history another hour, like writing up different blood tests for me and it took about a week, week and a half for him to get back to us. But as soon as he did, he was like, you need to go to directly to the hospital and start immunoglobulin therapy because you have no immune system right now. <Laugh> do not Pasco, you know, it was terrible. But also one of the best days of my life because I had been searching for so long and I wanted so badly to know what the problem was instead of finally have, it was really a huge relief.
Harper Spero (04:08):
Yeah, I think that that's such a common thing of you're searching for so long that all of a sudden you get this information and all of a sudden you're like, oh wait, my entire life just shifted in some way good or bad. But ultimately I have this diagnosis to attach to now what does my life look like from here? What do you remember about that 19 years of searching? Because as you said, I went through 10 years of pre-diagnosis from birth until I was 10 years old. And I'm curious to know like what your memories are of navigating doctors and as you said, being gaslit.
Ilana Jacqueline (04:44):
So for the most part, at that time before it had that first diagnosis, I was a kid, so a lot of it was pediatrics. So a lot of it was my mother taking me to the doctor's. And I just, I knew even as a child, things were not normal with me because I would go to school and I would see, you know, you go to school, kids get flus, they get colds and I would see kids get the flu leave for two days and then come back. Well, and I just could not wrap my mind around it as a child who would get the flu and I would be out for a month, I'd probably end up in the hospital. So I, I really, as a kid, I, I knew that there was something different wrong and my mother was a great advocate for me.
(05:25):
She would really take me to these doctors and be like, please listen, please do something. Please check her lungs for fluid. And I just remember being in and out of a lot of doctor's offices and finally when I was like maybe 1415, I started going to the doctor by myself and just learning how to advocate for myself as a teenager going into adulthood. And I just remember walking in every time with just this burden of shame and this feeling like, I'm gonna not, I'm gonna leave here. I'm not gonna have any answers. Things are not gonna get better and they're not gonna believe me. And and that was very often the case up until the diagnosis.
Harper Spero (05:59):
It's interesting that you had that moment at that age where you pivoted to going alone. Do you remember what change led you to that
Ilana Jacqueline (06:06):
Frequency? It was just the frequency of how sick I was and the fact that my mother at that point was a single mother. She was working, I needed to pick up the mantle and just start doing it myself. And I was missing so much school at that point too that I was constantly going into speak with my principal and like advocate for myself cuz I was breaking truancy laws. Like I was just sick all the time and you only get so many sick days a year. So they were gonna flu, flunk me out of school. So it was kind of, everything kind of converged and I just started being like, well I'm the one I need to be on top of this. I couldn't wait until I turned 18 like I had to start.
Harper Spero (06:41):
And what was the response from your school for that?
Ilana Jacqueline (06:43):
I was really lucky, I'll put it that way. I was really lucky. I had a great principal who would sit with me for hours and really made such a phenomenal effort to understand me and to understand what was wrong. He would speak on behalf of my teachers. I had a 5 0 4 plan, I had an, you know, individualized education plan for my disability as I had had since I was a child, even without a diagnosis. But I was really lucky that my principal advocated for me. But there were a lot of instances where one-on-one I would talk to my teachers and they would just gimme this very judgmental look like, you know, I'm sure you're fine, I'm sure it's not that bad. I'm sure you could try harder. And I was killing myself quite literally. Just to go to school for even one class a day to or, or just an hour a day to go collect my work and do my education at home.
Harper Spero (07:30):
What kind of conversations were you having about this with your peers, if at all? I
Ilana Jacqueline (07:34):
Was so ashamed back then. I think that without the words to explain what was happening to me, I was taking on other people's definitions of what was happening to me. I was harboring so much shame that I really had a hard time talking about it. It really wasn't until I was in college that I started to attach the word chronic illness or chronic fatigue, you know, and realize that there were other people like me out there with these things. But I didn't see that in high school at all and nobody spoke with me and it explained it to me. I feel like there's such a large community today and you can go online, you can find everything today. And not that I didn't have the internet, I was in high school from like 2004 to 2008. So I mean we were early stages, but the community is not what it is today online for what I was going through.
Harper Spero (08:18):
Oh yeah. It's evolved in such a major way as you said. I think a huge part of it has to do with age because I wonder about kids teenage years and twenties, if they had access that we do now, what that would look like and what they would be able to achieve and realize that like there are other people out there that are going through this stuff. I think I've said on a previous podcast episode many moons ago that I had a friend who had fibromyalgia that I went to sleep away camp with. She was one of my best friends. She was super, super vocal about it. I can picture her bag filled with pain medication and she talked about regularly, it was a known fact about her. And I never in my life prior to, you know, 11 years ago, acknowledged that she and I had something incumbent and I always sort of saw her as the sick girl and I was certainly not the sick person.
Ilana Jacqueline (09:12):
I was so afraid of having that label of being the sick girl I really like. It was, for some reason in my head I really felt like that was going to ruin me. And then when I was in college, I met my first friend who had a chronic illness and I was like, oh, I don't have to mask this around her. Like I can tell her what's going on. She's not going to judge me. She taught me so many things about how to be social with a chronic illness and not be ashamed of it, which was amazing. I wish I'd had that in high school cause I, it was so isolating.
Harper Spero (09:40):
I think that's where the world is slowly shifting around all of these topics to try to get kids and teens and college students to be more empowered to share their stories. Because as we have both learned, sharing our story has helped empower other people to do what they're doing in their lives. What do you think it was about that doctor that diagnosed you that had the patience and the interest and dedication to actually helping you get an answer?
Ilana Jacqueline (10:10):
I think that's an interesting question. I thought about it a lot. You know, truthfully, I wonder if he felt like because he knew my family that he couldn't let us down. Maybe he was just really good at his job. Maybe he just on a fluke, recognized those symptoms. Maybe it was because by the time I came into his office I was half dead and he did not want me to fully die in his office. Any of the immunologists that I had seen or allergists or pediatricians up until this point had the capacity, had the knowledge, but just didn't make the effort for me. Which is disappointing.
Harper Spero (10:39):
I've had a lot of conversations about this recently. I think there's a lot of doctors that don't look at the full picture. Yes, they'll do the allergy test and go, all right, you test negative for all of this, go on your way and don't look at everything going on. So how are they possibly gonna get to an actual diagnosis if they're not looking at everything that you've dealt
Ilana Jacqueline (10:58):
With? I feel like I, you know, I, I spent so much time in the rare disease world that I wanted to do that because it felt like a lot of the doctors that I saw were just very surface level diagnostics. Like do you have a peanut allergy versus do you have an immune deficiency? Which is a huge part of their medical school curriculum. And it's like what happened? Where is the disconnect from? You learned all these things, but you're only applying the most surface level diagnosis to your patients. So you
Harper Spero (11:27):
Get this diagnosis, you're told to immediately go to the doctor. What did your life look like from that day forward?
Ilana Jacqueline (11:33):
Messy. I wish I could say that it was a really straightforward, great path right after I was diagnosed. But it absolutely was not. The wonderful thing that I, that happened was that I was diagnosed. The not so wonderful thing was that I was diagnosed with a disease that not many doctors know how to treat, even if they know of it, even if they've heard of it. The further along that I've gotten in my journey with immunoglobulin therapy, which is the treatment for what I have, the more that I've realized that even though these doctors are prescribing these medications, they're very much not getting a full education on how they work and how they're administered. And so one of the things that I experienced after the initial diagnosis, the first thing they started me on was I V I G. And you know, I went to the hospital and they gave me maybe like Benadryl, just a Benadryl pill before they started pumping it through me.
(12:21):
And I, at the end of that, I ended up having aseptic meningitis after my first two I V I G treatments. I had aseptic meningitis and I was so miserable. It was the worst headache of my entire life up until that point. And I really felt mistrustful of the doctor, the treatment, the whole process. And we ended up stopping. I reevaluated, I saw another immunologist who I was hoping knew a little bit more. He prescribed me with subq treatment, which was much better for me. I definitely tolerated it better. But the problem was that after six weeks he was like, okay, I'm gonna look at your blood again and see if you've had any improvement. And six weeks is not enough time to adjust to immunoglobulin therapy, especially if you're 19 years old and you've missed out on 19 years worth of this thing that your body is, has always been lacking.
(13:06):
So he's like, well I'm not seeing enough improvement so I'm going to take you off of this medication and I'm just going to treat you the way that we've always treated you, which is like broad spectrum antibiotics. And when I say that, I mean I was on antibiotics every single day for years, years. So for the next like 10 years, I flailed like I struggled, I had major infections, I had sepsis, I was hospitalized, I had no clue what I was doing. None of my doctors had any clue what they were doing. And it wasn't until I was 30 years old that I found an immunologist that was like, what? Who, how did this happen? How did you get so poorly managed for the last decade? And she put me on immunoglobulin therapy, the right dosage, the right amount, explained everything to me. And now I've been on it for almost, gosh, it's been almost three years and now my life has dramatically improved. Now I've been infection free for over two years, which is unheard of in my world because it was never ending. Like I said, an infection was just around the corner always.
Harper Spero (14:13):
I hate that you had to take that path of going through all of this for so long, but the fact that you can say you're two years infection free is massive. One of the things that I recognize in hosting this podcast and facilitating writing workshops and everything is celebrating those small wins and how important those are because it feels like, alright, you know, I haven't had an infection but no it's, I haven't had an infection. This is so huge. Let's bask in that goodness because you deserve it. Clearly. You took all this time and knowledge that you learned from your own experience to advocate for yourself. How did you get into patient advocacy
Ilana Jacqueline (14:52):
Work? I think it was my mom who found her way into it first. She's a big advocate in the rare disease community. Her name is Carrie Levy and she's the producer of Lifetime TVs Behind The Mystery, rare and Genetic. And she started at the show not long after my diagnosis, literally she started it so that she could just learn about all these rare diseases and try to figure out what was the best thing for me. And I think she was the one who ended up pointing me towards Global Genes, which was my start in advocacy. And I had been working prior to that as a freelance writer and a publicist, but I was hired by them and I started working as the managing editor there and I just never looked back. It, this was really important work that I was doing there and I felt like, you know, if I'm gonna apply my skills to anything like it was going to be advocacy.
Harper Spero (15:37):
What has that experience been like for
Ilana Jacqueline (15:39):
You? I'm proud of my career in advocacy because I'm not coming from this place of having a master's degree in genetics or anything, you know, not at all. I, I'm really just passionate about keeping patients alive and clearing a path forward with whatever tools you've got. And for me that was writing, that was marketing and that was being able to have really tough conversations and relate to people through them. My career's been a little all over the place in advocacy in a, in a wonderful way. Like I started at Global Genes as their managing editor. My job there was really intake, hearing patient stories, literally thousands of them interviews, learning the ropes and eventually teaching new patients because we were really in, you know, a booming time for whole genome sequencing when I started there, teaching new patients how to start nonprofits and how to get involved in advocacy.
(16:29):
So it was really a privilege to be able to work with a lot of these organizations that have grown so large at their start. And from Global Genes. I ended up in the private sector working for a company out of Tel Aviv called F D N A or Face to Gene. And I worked remotely that was a startup that used facial recognition technology to steer geneticists towards better understanding of different rare diseases. We built a genomics collaborative while I was there and my job was to crowdsource patients and we really built some incredible data sets. So helping to grow that technology that was gonna help diagnose rare disease patients was really meaningful to me. And then after that I freelanced for a while. At that point my first book had been published and I was doing speaking engagements and consulting for different pharma companies and finally I landed at a company called Wego Health, which is a pharmaceutical advertising agency and they've recently been acquired by a company called Health Union. So that's where I work now as an associate director of community.
Harper Spero (17:26):
You mentioned your book, so I wanna dig into that. When did you decide to write a book and what was the process of writing
Ilana Jacqueline (17:32):
It? I think I decided to write a book when I was like seven <laugh>. I was always going to write a book. I, you know, I used to think I would be like a young adult romance novelist or like I'd write an angsty teen novel. But it ended up being a chronic illness self-help book, which was unexpected. And I actually started blogging first because it was like the early two thousands. So it was a real vibe back then. And I just wrote about, you know what, having a chronic illness in your twenties was actually like, like all the things it impacted college. My first job moving out, being in a relationship all while struggling to figure out, you know, who are you as a person and then as a person with the disease that wasn't gonna go away. It really took off and I, and I built this core audience so this caught the attention of a publisher and I actually had a publishing deal with another company before the one that ended up publishing it and that publishing company like went under the book came out. So I was devastated and I was hospitalized at the time of course. So I started writing query letters like from my hospital bed and eventually landed with my literary agent, Jill Marsal. And she carried me through my first book deal and just signed me for my second. So the first book was with New Harbinger and the new one is with Ben Bella Books, which is a division of Penguin Random House.
Harper Spero (18:44):
So if readers were to take away one message from your first book, what would you want that to be?
Ilana Jacqueline (18:49):
It would be that you can do it your own way and maybe you've only been fed examples of how able bodied people kind of grow into adulthood, but you're not alone And people with all different types of disabilities have to grow into their own too. And it's okay to take your own path and protect your peace and find different ways of existing as an adult than what your siblings or parents or peers did. And there's nothing wrong with that. And I also hope people keep in mind that this book is kind of a, it's not for advanced veteran chronically ill patience. It's just kind of like a starter guide. I think the marketing got a little mixed with that message. I know I've seen reviews that were like, nothing here rocked my world. I'm like, yeah, you've been living with the disease for 50 years, so this is not gonna be anything terribly new to you. But my next book, it's gonna be a lot more broad of an audience that applies to all female patients. But
Harper Spero (19:38):
That's really interesting that you got feedback like that. I just turned around to look at my bookshelf, this book Chronic Resilience by Dene Horn who facilitated a writing workshop for Made Visible a few years ago. And it was the first book I ever picked up around chronic illness in probably 2012 or 2013, many, many years into a diagnosis. But many years into not acknowledging that I belonged and that this book was meant for me and the entire book is something that I have highlighted. Every single word was something that I related to. It depends on where you are in your journey because yes, I can read it now 10, 11 years later and still relate to it, but reading it for the first time and reading someone else saying the things that you feel is so, so powerful. Oh my God, I'm not the only person going through
Ilana Jacqueline (20:28):
This. Absolutely. I've got a lot of messages like that as well. I think the only reason that the other ones stick with me is just because I've been doing so much content creation over the last couple of years. And even though I know that people, they, they do appreciate, they really do appreciate the relatability of being vulnerable with your chronic illness out loud. There's a lot of them too who are just, they're in so much need for tactical instruction and that's such a missing piece of the puzzle for so many of us and, and when we've lived for years and years and years and keep coming across these same problems again and again, it just, there's a hope and an expectation that when you pick up these books, there's going to be the answer. As I work as a content creator and as I work on this next book, it's really been a goal of mine to be like, I wanna give you the answer. Like I wanna give you the full breadth of all the experiences that we've collected over time, specifically in the last five, 10 years on, on how to talk to our doctors and how to overcome all these really common obstacles that are relatable. But we don't want them to be relatable anymore. We want these to just be old things that we can repurpose and just have a completely different experience. You
Harper Spero (21:40):
Mentioned the relationship component. I'm curious to know when you met your husband, how and when you told him about your health?
Ilana Jacqueline (21:48):
It was early, but then so much of our relationship was early cuz we met when we were 17 years old, so we were high school sweethearts and we have been together now half our lives. We had texted and like, I'm gonna really age myself here, but we texted in MySpace message <laugh>. But when we actually met, like I was trying to like hide it, I literally was able to hide it for like three days. I was healthy for three days of our relationship and then I was like, no, I can't go out on a date. I have a sinus infection. And my husband has just been an amazing advocate for me throughout our entire life and relationship together. And part of that I think is because one, okay, it's a weird thing for me, it's a weird thing every time I tell someone this, but like the day that I met him, I was like, this will be the man that I marry.
(22:34):
Like no question in my head, this will be the man that I married. And I explained this to my mom after the first date and she was like, okay, well then I guess we need to like bring him into the loop here and explain to him how to be an advocate for you. So maybe like two months into our relationship, whenever I had to go to the emergency room, he was coming to the emergency room. My mom was literally giving him instructions on how to advocate for me in the emergency room. And you, you have to remember he's 17, he's a 17 year old boy. For him to put in the effort to learn these things and to be there for me, like well it's, it's, it's worked out we'll. Say that
Harper Spero (23:14):
<Laugh>. He's still in the picture. I'm thrilled to hear it.
Ilana Jacqueline (23:17):
Yeah.
Harper Spero (23:18):
Okay. So you mentioned your second book, which is a combat guide for Women facing medical gaslighting. What made you focus on medical gaslighting?
Ilana Jacqueline (23:28):
It's been the biggest obstacle I think in my life to getting care is simply like not being believed or being dismissed or being told that my symptoms were a symptom of, you know, ambiguous mental illness when that just wasn't the case. And I thought to myself originally working at Global Genes here was taking in all these patient stories and seeing medical gaslighting over and over again in every, literally every single one of them. I originally thought, oh it's just the rare disease world <laugh>, like it's just rare diseases that this happens to. But then I started to branch out in my advocacy work and oh, it's not just rare disease. It's literally if you are a woman and you come to a doctor with anything that is not like the most painfully obvious injury or illness gaslighting happens. Like it just happens to all of us.
(24:17):
And once I realized like how universal a problem that was, what did we do? How do we respond to that? What are we supposed to say when these scripts have already been written by the medical community? You know, we're gonna tell patients all your, all your test results are normal so everything's fine. But no one had really developed the comeback for what to say to these doctors when they would give us these statements that were just so extremely unhelpful and would set us back. So I, you know, I started doing a really deep dive on women's health and the history of it and how did we get here as a community of patients and what are the biggest problems systemically and what are the biggest problems one-on-one and how are we gonna figure that out?
Harper Spero (24:57):
I'm so glad you're addressing this. It's such a huge problem. It's not just the rare disease world. So many people are being affected by this. So what words of advice do you have for patients who are dealing with the emotional toll of medical gaslight and how can they feel empowered to advocate for themselves?
Ilana Jacqueline (25:17):
One of the biggest ideas that I want to make sure people understand is that the goal of medical gaslighting is to get patients to stop seeking care. That is what the goal is. If I can shame you out of worrying, out of questioning, then you will leave this office and me alone. I want to be really clear on this. We are at war. You are fighting for your life against medical gaslighting. The consequences of being ignored when it comes to your health concerns isn't just that you're made to feel crazy, you can die. Women have died, many women have died. And so, especially with this book that I'm writing, it's a combat guide in, in the same way you'd look at like a survival guide. You know, we're gonna talk about strategy, about recognizing risks and red flags and we're gonna talk about how we can make smarter decisions, not perfect ones, but ones we realistically have access to based on our strengths and our resources and our mental health.
Harper Spero (26:09):
It's so huge. When does this come out?
Ilana Jacqueline (26:12):
This comes out fall 2024.
Harper Spero (26:14):
Oh my god. Amazing. So you have an email set up so that women can share their stories with you to be included in the book. Why is highlighting the experience of others important to you?
Ilana Jacqueline (26:24):
The reason that I wanted to include multiple narratives is, is I really wanted to show that this is so widespread. I wanna show you how it looks. Cuz sometimes gaslighting is very sweet and quiet and it's not, you know, being screamed at, it's not being told you're an idiot. It's just like comforting. And I want you to be able to see that in different scenarios. It looks like different things, but at the end of the day, you are being gaslit out of care. I could fill this entire book on almost every topic that I'm covering with my own experiences. But I think the most interesting thing about this topic is that I'm not alone in having been medically gaslit. And I want women to see themselves represented here. You know, their experiences, the things the world sets a bias against them to get treatment. So I am collecting a variety of stories and doing interviews. I've done many so far. I'm still open to collecting many more still for this book and for projects to come after. So if you have a story that you wanna share, please send it to me. You can send it to, I was not heard@gmail.com and I will read it and I will try to see if there's a relevant space for it, either in the book or I'm looking at different ways to share these stories because it has been a flood, a torrent, every woman has a story and all of them are important, valuable, relatable.
Harper Spero (27:38):
Thank you for doing that. I think it's such an opportunity for people to feel more seen and heard in this community. You acknowledge being a content creator early on and you have a doctor conversation TikTok series where you act out how patients can advocate for themselves with providers. It's incredible. Thank you. What kind of response have you gotten from this series?
Ilana Jacqueline (28:00):
Oh man. So many wonderful responses, which is why I keep doing them. You know, it's funny, working in pharma marketing, one of our most popular resources in advertising is this like doctor discussion guide. A lot of them make me laugh because they're just like, ask your doctor X, Y, Z, and, and they'll say yes. And I'm like, hmm. And in my videos I'm like, no, that's, doctor's probably gonna fight with you or make you explain yourself. And I know, you know, that's what actually happens. So I try to make cohesive arguments for things like, you know, getting a hysterectomy or requesting imaging or coming to the ER with painful periods and wanting to be worked up. You know, there are no easy conversations and we need to see them modeled realistically.
Harper Spero (28:42):
What do you think is the biggest piece of advice that you can provide to someone who doesn't know how to advocate for themselves?
Ilana Jacqueline (28:50):
I think the best advice that I could provide would be to start talking about it. I think that you're gonna find that all the women around you have had this experience in some way. And I think opening the door to that vulnerability, to having those conversations with other women, you're gonna see both what did and did not happen. So there are people that you know that fight it and that have their own way of like just having the audacity and having this abrupt kind of courage to talk back. And it doesn't always work out great the way that they do it, but it's nice to know that like there are different ways to respond. There are other people that kind of go quietly and then they don't seek care and then the problem grows and later on they realize it would've been worth it to speak up. It would've been worth it to have the courage to fight what my doctor was telling me and ask for more. So I think if, if you're nervous about being gas lit, you have been gas lit, you don't know how to respond, my best advice is to just start talking about it so that people can start talking back to you about what they've seen and what's what they've experienced. And you can let that guide you. You can let that empower you.
Harper Spero (30:00):
We've heard on the show many times how many people have felt so small in doctor's offices and don't feel like they have a voice and the ability to get their questions answered and get the care that they deserve and need. If you could address a single misconception about patients, what would it be?
Ilana Jacqueline (30:18):
That they want to be patients, I guess. No, no one wants to be a patient or to be an advocate. No one popped out of the womb and decided they were, you know, interested in the struggle. I think society places that burden on us as the patient and we have, you know, that we have some sort of desire to be sick especially if we're advocates. Like it gives us purpose. And you know, like I could have been a hairdresser with purpose. Like I could have been like anything with purpose, but this is what happened and I'm making the best of it so others don't have to live through the worst of it.
Harper Spero (30:47):
Thanks for that. For you, for what you do, for what you do for the rare disease community and the invisible illness community because we need more people like you. And hopefully that's what your book will do for people who just don't feel like they have a voice. So thank you for writing this. What do you wish people knew about invisible illness?
Ilana Jacqueline (31:07):
It's okay to believe people when they say that they have one. You know, it's not hard to believe people. Yes, you run the risk of being deceive, but if that's how you treated everyone in your life that they were lying to you about something that serious, you'd never get close enough to anyone to know them as a person and what a waste that would be.
Harper Spero (31:25):
Thank you so much for this conversation. It's such an important one. How can people learn more about you, find your content and get your first book?
Ilana Jacqueline (31:35):
Well first I just wanna say thank you. This show is amazing. This show has helped so many people including myself, and I really appreciate you having me on. If people want to find out more, they can visit me everywhere. I'm on Instagram at Ilana_Jacqueline. That's my username on TikTok as well. And my website, ilanajacqueline.com, will have the latest news about my books.
Harper Spero (31:59):
Amazing. Thank you. Thanks. Thanks for tuning into Made Visible. We hope you learned about something new today. If you enjoyed this episode, please take a few minutes to subscribe, rate and review the show on Apple Podcasts. Your support means the world to us. Visit made visible stories.com to check out our writing workshops, corporate offerings, and more information that can help you in navigating life with an invisible illness. Follow made visible stories on Instagram. See you next week.