Ilana Jacqueline is a best-selling author, speaker, patient advocacy strategist, and professional patient advocate. While her background is in PR, her career as a patient advocate started with an early blog, Let’s Feel Better, in 2012, and gave birth to the book Surviving and Thriving with an Invisible Chronic Illness – which was Lauren’s playbook when she first got diagnosed (Ilana has a way of saying it like it is and managing to stay sane and amused that is right up Lauren’s alley). She has a longstanding relationship with Global Genes, where she served as the managing editor of The RARE Daily for five years. She was later appointed the Manager of Patient Advocacy at FDNA, where she developed the Genomics Collaborative program. Most recently, she has joined the boards of RUN (Rare and Undiagnosed Network), HAS (Health Advocacy Summit), and IDA (Invisible Disabilities Association), while also working at WEGO Health and continuing her regular column in IG Living. She has a long career of freelance writing, and has contributed to publications including The Huffington Post, Marie Claire, Everyday Health, Mashable, and The Miami Herald, among others. She speaks at medical, patient, and pharma conferences as well as consulting with companies on how the patient voice can improve the design of healthcare.
Tune in as Ilana shares...
- all about Surviving and Thriving with an Invisible Chronic Illness
- about life with PIDD (Primary Immune Deficiency Disease)
- that her family is more holistic when it comes to healing – but that holistic approaches haven’t been effective in managing all her symptoms
- that she’s eager to try varied approaches to her healthcare
- how difficult it was to be taken seriously by doctors
- that she lives with constant gastrointestinal issues, nausea, etc.
- what PIDD is: a lack of antibodies to prevent illness; and how to treat it: intravenous immunoglobulin therapy (IVIG)
- that she is one of the very rare few living with PIDD who do not have a positive response to IVIG – so now, she treats infections as they come (high-dose/IV antibiotics, etc.)
- that she has survived pneumonia, sepsis, and other serious conditions as a result of PIDD
- that she is constantly proactive about her health, prevention, and care
- how telecommuting has enabled her to have a career without endangering her body
- the role that self-care and boundaries play in her life, both personally and professionally
- confrontations with strangers – and the audacity of the uninformed
- what it was like to have a visible element to her chronic illness (in the form of a central or PICC line)
- the “rite of passage” of being judged for using the disabled spot in a parking lot – when you have a parking pass and live with disability, but look young and able
- why she’s solution-focused and doesn’t wallow in sadness
- her “curiosity cards” – business cards that called strangers out on staring, and provided answers through her blog
- escaping uncomfortable situations without always engaging
- why it’s not a disabled/chronically ill person’s responsibility to educate everyone – but why instructing the public on how to respond is useful
- her co-morbidities, among them dysautonomia (the dysfunction of the autonomic nervous system) – and why hydration and fluids are so important to her health
- how her mom has shown up as her advocate – and discovered her own diagnoses after Ilana did
- how she’s learned to mitigate medical trauma
- how her husband has taken on the role of advocate from the beginning of their relationship
- what it’s like to be a patient advocate
- her realizations about friendship with chronic illness – and that relationships are a two-way street
- other chronic illness warriors she admires
- how she was diagnosed with pelvic floor dysfunction
- the thin line between empowerment and shame in the chronic illness world
- the importance of finding a good therapist
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: All right guys, thank you for joining us. I am here today with one of my patient advocacy heroes, Ilana Jacqueline. Ilana, thank you so much for joining us!
Ilana: Thank you so much for having me!
Lauren: It's such a pleasure. And I was just telling her before we started recording, that her book, Surviving and Thriving with an Invisible Chronic Illness, is one of the first books I read when I got sick, and has been such a handy guidebook for dealing with everything — no matter what you've got going on. As long as it's chronic, you will be helped by this book. So it is just such a pleasure to have you on, and to talk today with an author and patient advocacy strategist. So thank you so much for joining us.
Ilana: Thank you so much for having me, again, and I'm so glad that it helped and that it was one of the first books. Because I really wrote it in that vein to be …
… an initial guidebook for anybody walking into this kind of situation in their life.
Lauren: I tell you what, though … you say initial guidebook, but it's one that I go back to a lot, too. And I think a lot of people who read the book do come back to it. Sometimes we need a little refresher, a reminder of what boundaries look like, and what our elevator pitch can look like, and things like that. Especially as these things develop over time … so it's just fantastic. So everyone go get a copy, and I'll link to it on the episode page. So, I think the best way to start is for you to tell us about your background. If you could tell us when and how you first realized that you were sick, and what you did about it?
Ilana: My main condition is Primary Immunodeficiency Disease (PIDD), which is a rare genetic disease. It was something that I was born with, but it was not something that I was diagnosed with until I was 19. But I always knew I was sick.
From very, very early on, I had issues with digestion and I was a living walking Petri dish — just constant infections.
I always knew that something was wrong. I have memories of walking around with Altoids in the pocket of my school uniform because I was always nauseated. I was constantly catching colds and viruses. When I was seven, I had a pneumothorax [collapsed lung] and pneumonia and was in the hospital for about a month. Things never really went back to normal after that. And every sickness kind of took its toll. And it wasn't until I was a senior in high school that I really thought, ‘Oh, this is abnormal. And it's serious.’ But it wasn't until I was an adult that I really kind of stepped into that word ‘chronic illness’ or ‘invisible illness', and understood that was me they were talking about.
Lauren: Well, so much of the journey of being able to not take on this identity, but allow these diagnoses to be a part of who we are, can be really hard. And you address that in all of your writing: in your blog and in the book. So, what steps did you take to control your health once you got these diagnoses?
Ilana: Well, it was kind of a big shift for me because I grew up in a mostly holistic family. My mother did energy work. My aunt was an acupuncturist. And I grew up in Boca Raton, which is kind of an affluent city where there are a lot of “healers”. I kind of got roped into that world as a child, and it was obviously not effective for me. I tried a bunch of things. I tried elimination diets, I tried allergy testing. And then when I was around 14, I started seeing actual specialists and getting testing done. There was really no such thing as controlling my health as a kid or as a teen. And now even as an adult. I can do my best. But I do a lot of things to try and improve the situation. I do physical therapy twice a week. I also go to therapy; with a therapist every week because it's so stressful and it's something that you have to take care of both sides of. I check in with all my different specialists every month. But I try to keep my stress levels low. I do a lot of self-care and try not to push myself over the limit too much. But there's still a lot of of treatment and therapies that I want to pursue because I'm just so eager to do everything possible to control it.
But rushing to do 100 therapies at once is a good way to make sure they all fail.
Lauren: Well, you'll never know which ones are working either way! So, how long a gap was there between you thinking, ‘Oh, gee, something's up’ and getting a diagnosis — particularly with the Primary Immunodeficiency?
Ilana: Like I said, I kind of always knew that something was off. And I started trying to pursue a diagnosis when I was 14 or 15. And I just started doing all these … mostly gastrointestinal stuff. So it was a lot of scopes that kept going in and not finding anything. So it took several years as a teenager to really get to a point where somebody actually took me seriously. I was completely ruined by the time that I got my diagnosis. I was extremely weak; my antibodies were very, very low. By the time that I went in and saw that doctor and got the tests done … as soon as the doctor got the results, he called me and said, "Wherever you are, stop, get in the car, go to the hospital, go and get your IVIG because your levels are bad."
Lauren: Can you tell us a little bit about what Primary Immunodeficiency is, just so that the listeners who are tuning in who aren't familiar can have some sense of what you're living with every day?
Basically, your immune system is made up of different antibodies, and I'm missing a whole chunk of them, just a whole class of them. And those are the antibodies that protect you from infections, from viruses, from bacteria.
Basically, what this means for me in my everyday life is that I'm very susceptible to getting sick from other people. I shouldn't really be in crowds, on airplanes, in places where you're going to get sick. It takes me a very long time to recover. Now, Primary Immunodeficiency Disease does have a treatment. It's one of the 5% of rare diseases that actually has a treatment. And that's intravenous immunoglobulin therapy…
Lauren: That’s the IVIG that you mentioned before?
Ilana: Yes. You go to the hospital and get this infusion. I don't know if it was just that we had not figured out my diagnosis for 19 years, but I didn't respond to the treatment. I did treatments in the hospital for about six months, and then I did home treatments which are called Sub Q IVIG, which is where they do shots in your stomach. And so I did that, and I just had no …
Lauren: …no positive reaction.
Ilana: Yeah. Now I'm at the point where … because that didn't work, the only way to treat me is … if I get an infection, then we treat the infection. I don't respond to your basic Z-Pack antibiotics. It generally goes from a very high dose of either prophylactic antibiotics or reactive antibiotics, to IV antibiotics. And we kinda go from there. It's a lot of just being aware. I don't get temperatures at all. I had pneumonia, I had sepsis; and the highest temperature I ever got was 99 — that was my highest temperature.
My body doesn't fight back.
So I could be very, very extremely ill and not really know it. So I have to take my temperature a couple of times a day and make sure that I'm not in the middle of an infection that I don't even know about. And I always kind of feel sick. So it’s something I just have to be constantly aware of and checking on and proactive about.
Lauren: Well, the next thing I was going to ask you — and you started getting into it — is, what a typical day is like for you? How do you go about your day, managing your symptoms and preventing future illness?
Ilana: It’s definitely a challenge, because I am a type A personality.
Lauren: It's always us; we’re always the ones who get chronic illness! I never understand it.
Ilana: Right. I want to work, and I take care of my house, my dog. I'm married; I’ve built a whole life for myself.
But my disease is, for the most part, in control of how I'm able to live.
And so basically, I just try to be as kind to myself as I can. Which has been a long, long road — because I used to really have an overall frustration and self-hatred … I can't get as much done as everyone else can. I can't do things as fast as everyone else can. I can't go out and go to parties or the kind of events that I want to go to. Or travel to conferences. And I have to try to find ways to participate in all the things I want to participate in, but do that in ways that don't destroy my body. So, telecommuting … I've really been able to do so much with that. I've been able to make a whole career for myself without having to endanger my body. And explore and meet new people. And as I get better and as I do a little bit better, I can go out and pick and choose what's worth it to me to expend my energy and security on, to go out and do.
Lauren: You talk about a few of these things in your book; you talk about different ways that you can work remotely if you're somebody who has a schedule that they need to let their body manage, instead of letting a larger corporation manage it. And also, you talk about really making space in your social life, in your professional life, and in every aspect of your life — for your disease to exist without taking control of your identity. And one of the things you talked about, that hasn't come up yet when we've been talking, is when you had to have PICC lines, and you would have ports that would be visible if you wore a tank top. Because you're living in Florida and you weren't gonna wrap up in a muumuu or something to cover it up. So how did you manage at least the early concerns about stigma with things like that, that are visible — versus the invisible symptoms, like fatigue and nausea that you can't really explain fully to people unless they experience it themselves?
Ilana: It's definitely a confusing kind of thing to deal with. Because in some situations, you don't want anyone to know what's going on. You just want to be like everyone else. You just want to be normal. You don't want that to be a part of the storyline. And then in other situations, it's imperative that people know that you are sick — that things are different for you. When my disease started to become visible … I had a Central line placed, I think it was in 2014, so I was 24. Before that, I had PICC lines, which are lines in the arm. And obviously both of those were visible. I had definitely some weird reactions from people, random strangers. I was out for lunch with my mom at a nice restaurant and some guy came over to our table … didn't sit down but basically leaned down, put his elbows on the table, looked at me and was, like, “So what's that all about?”
Lauren: No! I cannot believe the way people behave sometimes!
Ilana: The audacity is insane! And another situation I had … I was at a gas station and I was buying Gatorade. And the cashier looked at me and he looked at my chest, and he was, like, “Oh my God, did you get shot?”
Lauren: Well, this is America. So not entirely unlikely! (laughs)
Ilana: I looked at him and I was, like, “Even if I was, why would you ask?”
Lauren: It’s none of your business!
Ilana: It was all just situations where I wasn't thinking about it, where I was in the mindset of … I was just having lunch, or I was running errands, or I was being me. And sometimes people would say something about it. They'd be, like, “Oh, are you okay?” And I’m, like, “Yeah, I’m good! What’s up?” And forget that it was there. And then at the same time, before I had the port, I had the handicapped pass that I'd be parking with. There were several situations with that. But the first time it happened to me, I was walking into a Starbucks and I parked — and it was probably my first time using the pass. I was already nervous about it. I was already having anxiety that someone would say something. And somebody did. I think it's almost like a rite of passage for anyone with an invisible illness to go through that initial situation. I remember this guy was sitting at a table in front of Starbucks, and he said, “You shouldn't be parking there.” And I’m, like, “Yeah, I can. I have a handicap pass.” He was, like, "You're not disabled.” And I was, like, “You're not a doctor.” And then I walked away, but I was fuming. I was so angry with him, and with the situation. I went home and I spoke with my mother, and I told her — I was crying — just how bad it made me feel, and how judged I felt. And she was, like, “Get over it.” And that's a lot of my tough love in the book! (laughs)
Lauren: I don't feel like you're tough love. I feel like you’re: There are other ways to look at it. It's a constructive thing. It's not like you brush it off.
Ilana: Yeah, it's like …
We can sit here and we can cry about it. Or we can come up with a solution about it.
Lauren: And you're very solution-based.
Ilana: Oh, so solution-based. If I don't have a way of moving forward with it to know that I can take care of it next time, the uneasiness of it for me is so anxiety-producing. So, the solution we came up with was making business cards — “curiosity cards” I call them. I just went on Vistaprint and I created front and backside cards that said, I saw you staring, or something like that. It's okay to be curious. And then, If you would like more information on what's going on with me, or what this is, or answers to your questions, you can check out my blog … And at that time, I was very, very active on my Let’s Feel Better blog, which I started in 2012. And that really served me well, because it was a way for me to escape those situations and to not have to engage every single time. Because when you're a patient advocate, you start to get this feeling like it’s my job, my whole world needs to be about educating every single person in my path. And that's not the case.
It's not my responsibility to educate every single person in the world.
Lauren: Absolutely not.
Ilana: Yes, you have to have boundaries on that. You have to give yourself space to be a person, and to not have your day interrupted by that. And then do advocacy in ways that are super meaningful to you, that you feel will have the most impact. And for me, those day-to-day conversations were not really having an impact. They were just causing me so much frustration and anxiety. And so, that was a great solution for me, and it's something I recommend for anyone who has a visible medical device that doesn't want to talk about it.
Lauren: Or has an invisible illness and you have a disabled parking placard, and you use it — and someone judges you for using it, but you look fine to them. It’s even that kind of thing. Or, I can even see situations where you could be using a tool like that even with completely invisible symptoms — like, if you're feeling nauseous or feeling fatigued, and someone can see that you're starting to sweat or starting to feel uncomfortable and you can just be, like, “Here, I'm just tired.”
Ilana: If you're having panic attacks, and if you have something like … I also have dysautonomia, so there were also instances where I would go out in public; and I had one really bad flare at one point … for, like, six months! …
Lauren: Flares sometimes do that!
Ilana: … where I was like fainting with absolutely zero warning. I would go to the grocery store, and then I would be on the floor. So I was always trying to think of better ways to handle those situations. It's tools; it’s going around with medical ID cards and medical bracelets.
You have to kind of instruct the public on how you want them to respond.
Otherwise there will be pandemonium, and there will be chaos and concern. It doesn't have to be that situation. For so many patients, we know that, while it may look like an extreme crisis on the outside to other people, this is a Tuesday for us. And we don't want 911 calls every Tuesday, just because we're out living our lives. So if you can have tools that give people instructions … if you have epilepsy or you have fainting or you have diabetes, you have an opportunity where you can treat yourself or you can have others help you without having to make a giant scene about it. You want to do that for yourself; not for anyone else, just for yourself.
Lauren: Yeah, absolutely. Can you talk to us a little bit about the dysautonomia, too, and what that means and how that affects you, as well?
Ilana: Right. So of course, whenever you have a chronic illness, along the way, you develop comorbidities; you develop secondary diseases.
I started developing neurological symptoms and autonomic dysfunction. Dysautonomia is the dysfunction of the autonomic nervous system.
And so everything that's automatic in your body — things like blood pressure, circulation, sleep patterns, being able to stay hydrated naturally, things like that — were all just unregulated with me. So it caused fainting and caused dizziness, migraines, pain, just a lot of confusing symptoms. I had to be constantly hydrated, which was one of the reasons I had the Central lines and the PICC lines because I really needed daily fluids. I could sit there and drink eight bottles of Gatorade, three bottles of water, all those oral IV solutions … and it just would go right through me and my potassium would be low. I would have all these deficiencies, and really the only thing that helped was IV fluids. I did that for several years. And I caught sepsis twice because matching a Central line, which is basically that open line to your heart, with an immune deficiency where you have already such a vulnerable immune system, it's a given, really, that that eventually is going to interact in a bad way. And so while I was expecting it, it was still awful.
Lauren: It’s nice that you can laugh about it now! (laughs)
Ilana: At least I can laugh about it now, yeah!
Lauren: I remember one of the great things … you post a lot on Insta stories, and just talk really openly about stuff that you're dealing with … and you posted something a week or two ago that was basically, “My house is like a pharmaceutical warehouse!” (laughs) You have, like, all these IV bags and all different things; some of the stuff that you've held on to you don't necessarily need, but you might need in the future. And so you're always making sure that you have the tools that you need, which is great. And you're also always trying different products to manage various symptoms, and giving honest reviews of the products — whether it's a CBD product or a heat pack, or some different kind of therapy that you're trying for your nausea, or something like that. So it's really great for people to follow along and see everything that you're doing in that way. You mentioned your mom. And I know your husband comes up a lot on your social media posts, as well. Did you find that you became your own advocate as you're teaching everyone to do, as well as needing a personal advocate — be that a friend, family member, or a loved one — along this journey to health? And how has that affected those relationships?
Ilana: Well, in the beginning, like I said, my mom was a little bit more into energy work and that kind of alternative healing. And once she realized — and she realized very early on — ‘Oh, that's not going to work for her,’ and she started to really understand … I'm not faking it, this is real stuff that's going down … she became my biggest advocate, long before I understood what an advocate was. She would go to the emergency room with me, doctors’ offices with me, and fight for me. She was just a great role model for me on how to stand up for myself. She has a similar condition. She has similar issues with her immune system, which wasn't diagnosed until after I was diagnosed.
But she always dealt with medical issues throughout her life, and doctors who didn't believe her … and she really helped me to understand that I didn't have to put up with that. And that I could speak up for myself.
And she also helped me have a better attitude about dealing with the trauma of constant medical issues. When I talk about that, I mean … I have great memories, weirdly enough, of when I was in the ER, as a child or as a young teenager … where we had rules like, “If we go to the ER, we're not going to cry about it. We're going to laugh, we're going to watch funny TV shows, we're going to make jokes, we're going to prank the doctors.” We would often go into the emergency room and my mom would say, “All right, we're ready to have the baby.”
Lauren: That’s fantastic! (laughs)
Ilana: Things like that! Just to defuse the tension, so this didn't have to be drama and trauma all the time. My husband and I met when we were 17 — we’re high school sweethearts. The first month or so of he and I dating, I was trying to slowly ease him into understanding that I was sick and that this was not a temporary thing.
Lauren: So you weren't public with your friends in high school and stuff?
Ilana: Not really. It was something I was still kind of figuring out myself, and I wasn't very public about it. I'd had bad reactions from family members who didn't understand, from friends who didn't understand. And so I really wasn't eager to be open about this kind of stuff.
Lauren: But of course, you have to be in a romantic relationship at some point!
Ilana: Oh, sure. I mean, a week into that relationship, I was throwing up and there was no …
Lauren: And saying, “I swear I’m not pregnant!” (laughs)
Ilana: And he was great. He was really, from day one, extremely compassionate, extremely willing to learn. And so we kind of had a very open dialogue between myself, my mother who had been my full-time caregiver, and him about bringing him into the fold and about how much responsibility he wanted to take on. Again, we're 17. We had been dating for maybe just a couple of months at this point when we had the real serious conversations. I knew at that point that I wanted to … I knew from our first date that I wanted to marry him; I was head over heels. And so I knew this was going to be a long-term thing and that he was going to have to be a part of this — and he was always open to it. So whenever I would go to the emergency room, my mom would call him. He would come, and she basically taught him how to be with me in that situation — how not to panic, how not to be dismissed, when to get the doctors, when to calm me down. And so he was trained almost to be my co-advocate. At the same time, I was learning myself how to be my own advocate and be independent in that.
Lauren: You sort of learned alongside each other, it sounds like. And it has contributed to obviously a very loving and open relationship, too —because he shows up on social media with you all the time. You're always talking about this stuff in his presence. And it’s great because you guys are so open and supportive of each other with regard to that.
Ilana: I can't really imagine being in a healthy relationship where they're not a part of that, where they're not in a supportive role. And it's a two-way street.
He supports me with these challenges that I have; I support him with challenges that he has. It's like any other relationship.
If you are there for each other, then it's not like, “Oh, he takes care of me all the time; he waits on me hand and foot.” It doesn't feel like that to me. I feel like we're equal partners in this.
Lauren: Absolutely. But I think it's interesting, because I think a lot of people who are listening may not understand that fully in their lives yet. And I think sometimes it does take some people a journey to understand the equal partnership part of a relationship. Sometimes getting sick can be a blessing in that way, right? Because it can actually force us into that reality with our partners, too.
Ilana: Right. And it's not something that is inherent.
It’s not something that is like you suddenly wake up and know how to be the perfect support person. Just like you don't wake up and know how to be the perfect patient, either. It's a learning process, it’s something you have to learn to do together.
Lauren: Yeah. And you guys obviously did do it together, which is really lovely. Let's talk a little bit about work and life. One of the things that I brought up earlier is how in the book you really lay out different ways that people with chronic illness can find ways to work and create income remotely. How have you managed to do that for yourself in your career?
Ilana: It’s been a lot of trial and error. But my career has been so exciting in that I've been able to, kind of because of my limitations, find really interesting ways to make it work. And find really great people to make it work with. I am a patient advocacy strategist. And I started off, actually, as a publicist; that was my original career when I first went into the working world. I owned my own PR company, and I also did freelance writing. Obviously, I was writing and publishing.
Lauren: You had your blog.
Ilana: And I had my blog. And I had this PR company and I was managing, like, 10 clients at once by myself. I was a one-person show. But I was very young, and I didn't have any backup plan for what would happen if I got really, really sick and couldn't handle anything. And that happened. I got really sick, and all of my clients … I had to give them to someone else because I had no contingency plan. And I promised myself from that point that I wasn't going to put myself and the people that were trusting me and working with me in a situation where that could happen.
It's a matter of really setting yourself up for success.
And so now as a consultant, I only take on as many as I can handle at once. I space out my hours. I am a consultant now so I work with a lot of different clients. And I don't necessarily always work 50 hours a week, or something like that. It kind of depends on …
Lauren: … what you're able to handle, right? Are you working remotely? Are you working from home with all of these jobs, too?
Lauren: I guess, in a way, it's the best time to be chronically ill, right? Because if you're going to seek out work opportunities, we have access to the Internet, we have email and we have cell phones, and tools that are making it very accessible for people if they have the ability and the energy to put into creating a career outside of an actual workplace, if you will.
Ilana: Right. There are still times if I'm feeling well, and I want to be able to go to meetings and be there in person, I can. But for the most part, I set myself up so that I can always get the job done, even if I'm at home or from hospital. At one point, I remember I was freelancing for a magazine and I was doing a celebrity interview. And I was in the hospital.
Lauren: Oh, wow.
Ilana: I did it. Who was I interviewing? Darren Criss.
Lauren: Oh, yeah, from Glee!
Ilana: Right. And this was the day before his first episode aired on Glee. And so I wanted to get that interview out by the morning. And I remember, I was in the hospital, I had an IV in my arm, the alarm was going off, I was typing, I was talking. It is what you make of it.
Lauren: Well, it's one way to distract you from the possible negativity that can sort of seep in mentally when you're sitting in the hospital, right? Which was something that, at that point, you were probably very used to as well. It's one way to deflect from the trauma in a healthy way, because you're turning it into income.
Ilana: Right. And I always like to be working. It does help take my mind off of it. I definitely feel really uneasy when I'm not working. And I've just tried to work with companies who I can feel comfortable telling from the start, “I have a condition. I will always alert you if things are going downhill.” But in some other cases, I've had companies that have either no compassion, where they don't understand and it's not something they want to deal with … and I’ve had companies that are overly compassionate, where they would send me flowers every time I went to the hospital.
Lauren: Which is so weird!
Ilana: I would say, “This will so bankrupt the HR budget on flowers. You can’t be doing that. You don't have to feel that you have to do this every time. It’s nice …”
Lauren: It’s nice, but it’s also like, every time? If you’re someone who’s very frequently receiving medical care, if someone gives you flowers every time, it starts to feel a bit like a funeral, doesn’t it?! (laughs)
Ilana: Yeah! And I’m, like, “No, this is my normal. It’s a bad year, this is just how it is. But I can still get the job done!”
Lauren: But you're also working with companies that are working in the patient advocacy space. So I imagine a lot of them are also very open to your needs in that way, too.
Ilana: Yeah. And that's kind of been excellent, because I've been doing this now for about 12 years, working in advocacy. Before that, doing journalism and PR, I wasn't working with clients in the health space. And so I wasn't really able to be open or express to them who I was.
But now a lot of people hire me because of the experience that I have as a patient, because I'm constantly in the hospital. They value my expertise as a patient advocate.
And you know, the fact that I'm constantly hospitalized is me having Continuing Education!
Lauren: That's a great way of looking at it, isn't it! You mentioned a few instances where people confronted you about parking in a disabled spot and having your Central line visible, and things like that. Have there been any other experiences that you can share with us, where you've been confronted and forced to justify the fact that you were ill, and people couldn't tell? Or that you were fine and that this was your everyday?
Ilana: Most of those situations have been with doctors, and doctors who I have to see on a whim. So, for instance, a couple of months ago, I had a really, really severe sinus infection. I needed to go see an infectious disease doctor about getting a second opinion and seeing if I needed to be on IV antibiotics. Doctors who, you get in their office and they don't look at your medical record; they have no interest in that. And if I sit down and just tell them what's going on, often they’ll say, “Well, no, that's not possible." And they don't believe me. And I’m, like, “It's literally right here in this document. Here are my test results. Here are my scans, here are my bloods. Here’s my proof. All you need to do is open that folder.” And I have doctors who've just refused to open the folder.
Lauren: Do you think that's a problem with the way that doctors are being trained? Or the fact that most of them only have 15 minutes with us? Is that a failing of the medical system?
Ilana: I know it's a constraint because they've told me, “You are wasting my time. I have 10 other patients to see.” And I’m, like, “I'm wasting your time?”
Lauren: You’re wasting mine. Thanks.
Ilana: Yeah, basically.
Lauren: Wow. Is there ever a difference when you bring your husband with you to these appointments? Will the doctors be more willing to listen when you have a male advocate with you?
Ilana: Sometimes they are. I don't bring my mother or my husband to as many doctors' appointments as I used to.
Lauren: Yeah, you're more versed in how to handle this now.
Ilana: Yeah. And also, sometimes it's not even a bonus to have them there. Sometimes it makes it so they think that I'm being coddled, I guess. So, sometimes it backfires. Sometimes it helps. All I know is that I need to go in there not feeling vulnerable.
I need to go in there feeling confident, and having my goals and knowing what I need to get out of this appointment in order to function.
Sometimes, it's better to go alone. Sometimes you need that support. If I've had doctors in the past that have been jerks, that have been consistently the kind that don't believe what I'm saying or won't open the folder, then yes, I definitely come back with an advocate to help me advocate for myself.
Lauren: And take some stress off, right? So, why don't we talk about boundaries for a second? We’ve touched on it a little bit, but I wondered if you could speak more in detail about the idea of boundaries as someone with chronic illness, and what it looks like for you and what you recommend for the loved ones of people with chronic illness, as well as for people with chronic illness — in terms of revealing their different disabilities and their different illnesses. How do you suggest people go about that when they're looking into a world of chronic illness?
Ilana: It’s a lot of experimentation. For me, in the very beginning, my goal with sharing my story online and sharing it through my blog and social media was a matter of: I want my relatives to understand. I want people in my life who are supposed to love me to not hate me because they don't understand what's going on with me. And in doing that, and posting those blogs and sharing that information, I didn't get anything back from them. I didn't get any kind of positive response from them. But, all of these other people came into my life to say that they now understood, or this helped them. I had high school teachers, I had neighbors who barely knew me and now felt like they were totally engrossed in my life. Which was good and bad. And as things progressed, I started trying to figure out: What is my goal with sharing? What is my goal of being an advocate?
At first, it had been something so, so personal to me. And then it became … wow, if I'm able to step up for other people, then maybe they won't have to go through this.
And writing the book was for everyone. It was the guidebook I wanted; it was the information that I felt needed to be out there. I had been sharing everything on my blog. Absolutely everything. All of my worst days, all of my best days. And with the book, I was just trying to share concrete information and solutions that would apply to everyone. I didn't really feel like I needed to publish every single story about myself.
Lauren: Not everyone wants to do that either, do they? Some people just want to keep it even more private.
Ilana: Right. And that's something we've been talking about at WEGO Health.
Lauren: Which is one of the companies that you're working for as a patient advocate.
Ilana: Right. I’m their Patient Leader Network Coordinator. We're working on these different courses, and one of the things we’ve been talking about is boundaries and about privacy, and about how far do you want to let it go. You know, there are people who have conditions that are just not something that they feel like they want to discuss in everyday life — things like Irritable Bowel Disease, or testicular diseases. Even breast cancers, endometriosis, pelvic floor dysfunction. All that stuff can be like … Do I want my next door neighbor and my uncle and so-and-so hearing about all that?
There are so many ways of having an impact, and sharing and being an advocate, without putting yourself out there on a stage.
You don't need to sacrifice your privacy. You can come up with a username; you can contribute in ways that don't have to share your whole personal story. For me, I blogged for a long time about my personal stories. And I did it up until the point where it didn't feel good anymore, where I was getting more negative than I was getting positive. Now I share so much of my life on Instagram. And I love that.
Lauren: It’s an easy platform, I guess. It's sort of easier to post the content because you can just hit “record” and do it.
Ilana: Right. I can share my whole day. And that's the thing that I really like about it … that people can see not just one blog post about one topic. You see me working, you see me going to doctors’ appointments, you see me walking the dog. What's my diet like? Where are my friends? They see this whole life instead of just the the awful parts, the sick parts. So I think for boundaries, it's going to fluctuate throughout your life — what you're comfortable with and what you're not comfortable with. And I'm sure there will probably get to a point for me where I won't be so comfortable sharing everything. I share a whole heck of a lot. But the feedback that I get from it is that people need to hear that, they need to see it in action.
Lauren: It's interesting that you say that about openly sharing things on a platform like Instagram, seeing the whole person. Because one of the things that also comes up in your writing and in your book is about relationships. And not just romantic ones, but friendships as well. And how there are going to be some people who can handle it and want to be part of it. And there are going to be some people who you might lose for a while; they might come back around, they might not. But you have to be open to allowing those relationships to evolve in the way that they're meant to evolve, right?
Ilana: Yes. I have a whole thing about friendships that I put on my blog. It was years ago, during my first round of sepsis, and I just didn't feel like I got enough support … the support that I felt like I deserved and I required. It wasn't until years later that I stopped and thought, the reason that people weren't as supportive as I needed them to be wasn't because they didn't care. It wasn't because they were awful people; it wasn't because they were out to get me. This was an issue of: It takes a friend to be a friend.
You need to participate in your relationships in order for them to strengthen. Being chronically ill does not get you off the hook from being a good friend.
And if you stop being a good friend, your good friends disappear. So that was a really long life lesson that I had to learn. And now that I have ways of communicating with people … a big part of it was that I felt like I didn't have avenues to communicate with people. Because I couldn't go to parties. I couldn't go out. I was isolated. Social media gave me a lot of ways to connect with people, to stay updated on their lives. It's not just about posting my story. It's about watching everybody else's story. Being where they are and seeing how I can support them. And that's another thing I cover in the book — friendships … and how do you be a person of value to other people if you can't physically be in the same room with them. With a lot of my friends, I use this app called Marco Polo.
Lauren: Oh, my God, I love that app!
Ilana: It's great. It's such a good app. You can record video messages and send them back and forth to each other. You can do it while you're in the car. And it's much more personal than a phone call or a text. It makes you feel like you're there with them. And you can stay updated, you can get that full story. Then if you don't see your friends for several months, you still feel like, when you connect again, that you've been in it this whole time.
Lauren: It's interesting because I think a lot of people use apps like WhatsApp and Marco Polo, and email, to keep in touch with friends who are long distance. But actually, those could be the friends who live down the street that you might not get as much of a chance to see because your body isn't letting you, sometimes. So they can be very helpful — and we'll link to those on the episode page, too. I also think, one of the things that you mentioned about talking about your story and sharing about whether or not people are prepared for the information, is that it also normalizes the conversation, doesn't it? The more we talk about it, the more okay it becomes to talk about stuff that nobody else gets. People will start to understand what Primary Immunodeficiency is, what dysautonomia is, what chronic illness is — right?
Ilana: Yeah, and I think a really good example of that is, not even with me. I follow a ton of people on Instagram, but there's one girl, Lara Parker, who is a writer for BuzzFeed, and she is writing a book now about vagina problems. She is an advocate for patients with a host of vagina problems — endometriosis, vaginismus, pelvic floor dysfunction. I have had many, many abdominal surgeries in the last couple of years. And now, two months ago, I was diagnosed with pelvic floor dysfunction. And I would have had absolutely zero idea what it was. There were all these things that I could do for it. Had I not been watching Lara's journey and had I not seen her talk so openly about it like that. It’s such a terrible thing to suddenly come down with as another element of your disease — that’s so intimate. I feel like I can talk about that on Instagram. I know how important it is that I talk about it, too. What's happening to me, it might happen to somebody else. It probably will. And if I can share those experiences, and I can help to destigmatize all the things … when I see people sharing their ostomy stories, when I see people sharing their Irritable Bowel, their endometriosis, their testicular cancer stories …
Lauren: The more private or taboo stuff, yeah.
Ilana: Let it all out! We’re definitely in a period where a lot of disease communities have very vocal advocates. But there are still some communities that feel pressure to be quiet, and to be demure, and to not talk out loud about what's actually going on. It's improved so many disease communities to reduce the stigma. And we have to keep doing that; it has to be done.
Lauren: And it's interesting because I think someone like Lara Parker … actually her social media celebrity started because obviously she worked at BuzzFeed, and they did a video … it must be a few years ago now … where she was, for the first time, trying different CBD and THC products to manage her endometriosis pain.
Ilana: Her, and Kelsey Darragh, who has trigeminal neuralgia.
Lauren: Yes, that's right!
Ilana: Kelsey Darragh and Lara Parker, I’ve spoken with them, I’ve interviewed them both. Their stories were huge when they came out with those on BuzzFeed. And then they had a show on Hulu, Can We Cure, where they tried a bunch of alternative therapies for both of their conditions. Kelsey’s condition, trigeminal neuralgia, is super rare; very few people know about it, but it is extraordinarily painful.
Lauren: Yeah, it’s considered one of the most painful. That and CRPS are considered two of the most painful illnesses out there.
Ilana: Right. And the fact that she shared this. She's doing funny things, like sharing her “retainer face” — where she takes out her retainer and flips it inside out so she has this hilarious-looking face. Things like that are great. And then Lara talking about her masturbation and sex life and how she copes with that, and how she can have a happy relationship.
Lauren: She recently did a really cool thing where she was talking about … because people who have endometriosis and different pelvic floor illnesses and concerns, sometimes sex can be really painful. And so she was talking about different ways that you can … not dilate, but widen, I guess, the vaginal canal … so that you can make sex more comfortable, and different tools you can use for that. Just as you say, normalizing not only the conversations, but then through a medium like Instagram … where you’re, like, "Here's a picture of this stuff.” And it's not like something that the Instagram corporate offices are going to pull off the Internet, because there's no nipples or genitalia in the actual pictures. It's really interesting the way she's able to do that. It's fantastic.
Ilana: Yeah, and honestly, it really helped me. It really helped me, And going into pelvic floor therapy, there was very little online about what it was, and there was very little about what it was going to be like. It’s an extremely intimate thing. But if you go into it with a certain mindset, if you kind of know what's going to happen … Also, if you have a great therapist who's doing it with you, then it can be a wonderful, empowering experience. Or, it can be a quiet, shameful experience.
Lauren: No, I love that not only are you inspiring people, but you're also being inspired by a lot of other people in the community.
Ilana: I'm so inspired by so many people. I aggressively follow so many people. And now I feel like I'm a very weird part of their lives. Because I watch all these people daily. I'm invested in their health, I'm invested in their happiness, I want to see them succeed. And now I'm aware of what it's like to live with all these different diseases.
Lauren: No, it's funny because a moment ago you were saying you had to let the dog out of the office. And I was, like, “Oh, Happy! Hi, Happy!” I know your dog! He’s an Internet celebrity!
Ilana: It's nice. We’ve expanded our community. We're all friends in some weird fashion. We’re all a part of each other’s lives.
Lauren: We’re all connected. But it's also, as you have said before … it’s not just about your illness defining you. It’s about your illness being a part of the magnificent variations of different things that happen in your life. So now, we've covered so much today. And I like to wrap up my interviews with some Top Three Lists. I wondered if you could give us your top three tips for someone who either already has a chronic illness, or is waiting for diagnosis, or looking at entering the world of invisible or chronic illness. What would be your top three tips for living with these illnesses that you would give to these people?
Ilana: First, buy my book! (laughs)
Lauren: Yep! Surviving and Thriving with an Invisible Chronic Illness.
Ilana: One thing I would highly recommend is that even if you feel like you have been shamed, or been told that your illness is psychosomatic … there’s a lot of issues between people having undiagnosed diseases and being told that they have mental illness. But whatever that is, you still have so much stress in being a patient, and being a chronic illness patient, and you need to have an outlet; and you need tools for that. So I really recommend that everyone goes to therapy.
Find yourself a good therapist. Whether you think that you need it or not. You need it. And it's not just for you. It's for your whole village.
It's everyone that helps play a part in your life. I have reduced the amount of crying in exam rooms by 85% since going into therapy. It has really done such a good deal of positive help for me. So that's one thing. And then, I guess, get involved in the community. Share your story within your personal boundaries, however that feels comfortable. Because every voice matters.
Every voice makes a difference to somebody else who's in the dark and doesn't know what to do next.
Lauren: But conversely, I guess it's also not your job to educate everyone. And to understand what that boundary is for you.
Lauren: And I guess make “curiosity cards”!
Ilana: You know, everything is doable. Everything is solvable. There's a solution if you just sit and go as out of the box as you possibly can. There's a way of doing things. We would not be in the age that we're in, with the apps that we have, with all these tools and all the community, if we didn't think outside the box. So just think about it.
Think about what else you could do that's new and different, that you haven't seen done before.
Lauren: Which I guess also involves being kind to yourself as well, right? Being forgiving of yourself. Which is connected to the therapy, of course. Obviously you've also made some lifestyle changes. And I wondered if you had any Top Three … be they cheats or guilty pleasures or even comfort activities, that you turn to when you're having a flare-up of any of your illnesses. What are your Top Three favorite things that give you joy? I know you love that heating thing for your foot and ankle … foot and calf, right?
Ilana: Oh, yes! I have invested in absolutely every massage therapy tool that exists. I have holder massagers, the foot and ankle massagers, back ones, just the whole thing. So I'm definitely big on massage tools and physical therapy tools that I can use. And I think a big thing that I've invested into is Uber Eats and grocery deliveries.
Lauren: I just started doing Instacart, and it has changed my world! It’s the best!
Ilana: It’s such a drain on my energy budget to go grocery shopping. I get in there, and if I don't go in with a list and know exactly what I want, it drains me. So, yeah, massage tools, Uber Eats and grocery delivery apps. And then also, we hired a dog walker and a housekeeper. We live in a small enough apartment that it's not like a crazy amount of money to have someone come and clean the house. But for me to clean the house, for me to get on the floor and scrub the floors, is an entire day, perhaps two days’ worth, of energy. That completely drains me. So if there's anything that I can do to reduce the strain on myself, with dog walkers in the Florida heat, with groceries, with all that kind of stuff … I’ll do it.
Lauren: No, that's great. Those are really great strategies, I think, for people who are dealing with, especially fatigue … but also with potential concerns about being in crowds and being exposed to germs. If you've got Primary Immunodeficiency, or something that's affecting your immune system, that’s definitely something to think about. Well, Ilana, is there anything else you would like to tell everyone listening in today?
Ilana: Just I'm so grateful to be here. Thank you for having me, and letting me share my story. It’s been such a pleasure!
Lauren: Absolutely! It's such a pleasure to have you on. I'm so thrilled to introduce the audience to you and to your book. Because, man, we should have done this so much sooner. It should have been my first episode … like, “Guys, go get this book right now!” But it has been such a help to me and, again, it's sort of like that Bible that I keep going back to and referring to. So thank you so much for writing it for everyone in the community. And if everyone wants to find you, where can they find you online?
Lauren: Fantastic. And we’ll also link to Let's Feel Better, which is your blog. I mean, you're no longer updating that, from what I understand, right?
Ilana: Just a little bit, here and there. I'm doing a lot more YouTube these days.
Lauren: That seems to be more the going sort of interest, in video content, anyway. So I'm sure everyone appreciates that. Ilana, it has been such a pleasure having you on. I thank you so much, and wish you all the best working with WEGO Health. And hope to see some more books in the future!
Ilana: Yes, thank you so much!