Transcript

All right, everyone, thanks for joining us today. We're joined today by Rachel Trobman, who is the founder and CEO of Upside Health, which created the pain management app, Ouchie. It's an awesome app you guys should all check out. Rachel lives with mixed connective tissue disease, and she also has invisible illness in her family. Her mother has lupus SLE. And her brother has cystic fibrosis.

Lauren: Rachel, when and how did you first realize that you were sick?

Rachel: Towards the end of high school, I was feeling tired all the time. And I was having all sorts of stomach issues — gross stomach issues that when you're in high school, feel embarrassing. And I was anxious a lot. I went to a gastroenterologist, who gave me a colonoscopy at 17 — which is super fun and really sexy at 17!  And they found that I had unspecified colitis — just all sorts of inflammation in my colon, and I was put on medicine. And we kind of thought that was that. And then in freshman year of college, I was having some of those problems again, and had another colonoscopy; it showed up again. But they said, ‘Nope, it's not ulcerative colitis.’ And they ran more panels, and they told me there was something autoimmune going on.

But I was at a really big advantage in that my mom has lupus, and when she was younger had put together an incredible care team who are super-incredible [at] looking at labs. And so they ran the full gamut. And they said, ‘Oh, yeah, there's something here.’

Lauren: You were lucky that you had that team behind you.

Rachel: And I was also really lucky that I was in college at NYU at the time.

So I asked for the best medical professionals, or the most advanced medical professionals that existed, and so I was connected with the team at the Hospital for Special Surgery. And this ‘Dr. Gem’ as I like to call him … his name is Dr. Michael Lockshin; he's written books about being a patient advocate … from like day one, he said, “I don't care what these labs say. I'm treating you for the symptoms that I see. I see with my own eyes that your joints are inflamed. I see with my own eyes that you have a weird inflammation in your eardrum” … those kinds of things.

And eventually they came up with this diagnosis that kind of alternates between mixed connective tissue disease or unspecified connective tissue disease, depending on how my labs come back at any particular time.

Lauren: You've explained a little bit what your symptoms are. Can you tell us, specific to those diagnoses, how your symptoms fit into these particular diagnoses?

Rachel: With inflammatory connective tissue diseases, a lot of times they’re joint-based. So … fatigue, inflammation in the joints, inflammation in random places, like in your chest;it could be inflammation around organs, but thankfully that's not really much of what I've gotten. More of what I experience is on the cusp of a lot of various autoimmune diseases. So, for instance, I get symptoms that are really similar to Sjögren’s, so I had to have plugs put into my eyes.

Lauren: What do you mean, plugs?

Rachel: Yeah, I know – it's crazy. They put these little plugs into your tear ducts so that your eyes get more lubrication … so they're not so dried-out all the time, and eye drops just wouldn’t do anything. Or, whenI was pregnant, I had really, really low anemic-level clotting factors. I'm at a predisposed risk of hypothyroidism because I have antibodies against my thyroid; but they're not active.

So it's just one of those things where … I kind of live on this verge of when something happens in my body, it’s normally inflammatory. I can either wait, and eventually it will resolve itself — or go on a dose of steroids.

But they treat it, interestingly, similar to the way that my mom has been treated with lupus, where I take Plaquenil. So I don't know if Plaquenil has come up in any of your other interviews …

Lauren: It has!

Rachel: It’s the craziest drug in that it's an anti-malarial.

Lauren: Yes, I know – it’s so crazy!

Rachel: And that has kept my big things in check, thankfully.

But it's always a series of … whenever I get a test, it’s never normal. But it’s my normal. And it's never, thankfully, alarming enough. But there's a lot of pain and discomfort, and fatigue.

Lauren: You talked about taking Plaquenil. Are there other steps that you've taken, maybe holistically, to control your health — like changing diet and lifestyle as well?

Rachel: There are things that I've noticed, that when I do them, they make a big difference. Like when I exercise regularly, when I take care of myself.

Massage therapy does a big thing for me. Mindfulness; meditation has made a big impact for me. Pushing myself into social situations makes a big impact.

Lauren: And that's got to cover the psychological side of it, too, because we're talking about, obviously, physical symptoms. But the psychological side effects for so many of us, particularly with illnesses that people can't see, but we can feel … it brings ondepression, and that's aided very easily by isolation. So pushing yourself into those social situations gets you out.

Rachel: I also think something that's really interesting is that a lot of these connective tissue diseases or rheumatological conditions are so poorly understood by most of the health system — just because they're so new; they haven't been studied to the degree that others have been studied. And there isn't the same degree of funding, even, to study them and understand them.

And so with the lack of understanding, there's also a lack of compassion, and also a lack of … there are things I can do for you … and that frustration on both sides, I think really builds it up. So for me, finding care providers that understand, really is part of the care that I get, if that makes sense.

Lauren: Absolutely.

Rachel: One of the things that was really interesting is that, in addition to the connective tissue disease in my early 20s, completely separately, I started having panic attacks.

Panic attacks are like the most invisible of all invisible illnesses, because until you've had one, you do not understand; it is the most indescribable thing.

Lauren: It's a huge wave. It's like a tsunami that happens, and you can't control it.

Rachel: And it's not brought on by anything anxiety-driven. So it's not like … if I was less stressed-out, I wouldn't have had a panic attack. So it's not anything that anyone can relate to, but also because it's so physical.

If you were to go to a hospital with a panic attack, you would have a lot of symptoms that a heart attack patient was having. And if they were to run scans on you, at least initially, they would be thinking, ‘Oh, this person might be having a heart attack.’ I had an incident recently, too, with a medical provider, where they were like, “Honey, you just need to calm down.”

Lauren: Oh, that's … no!

Rachel: But it was a perfect example of … it’s still so new…

Lauren: And it's interesting that you're actually sort of practicing compassion toward that healthcare provider — because I would just be, like, “No, get out of here. You're condescending. I'm not talking to you.” But you're actually looking at it from the perspective that the system isn't really built to support healthcare providers in diagnosis sometimes.

Rachel: Yeah, I feel like at the time, internally, I was not that compassionate! I was more like, ‘Are you crazy? Are you kidding me? No way!’ But from a place of compassion and understanding, you can only do as good as the resources that you've been exposed to. But in terms of other, self-care-y things, or things that I have found that work for me, a lot is just living in the moment.

Lauren: And that also helps with depression.

Rachel: Not even that, but from reflection … I remember when I got my first job out of college. And I remember that when I was in college, in order to survive, I’d have to take a nap in the middle of the day. I just had to. And then I was fine; you would not have known the difference.

But I just had to nap … and it wasn't even like a little nap. It was like my whole entire body shut down.

Lauren: Needed that rest. At this point, you've been diagnosed as well?

Rachel: Yeah. Yeah, I’d been diagnosed probably in my early 20s. But this was like my first real job. And in college, I kind of felt like it was okay — although I felt guilty for it.

But in the professional world, I was, like, ‘Well, this isn't gonna work. You can't take naps. These are corporate jobs; I don't know how I'm going to do it.’ And I remember telling my doctor … And then I did it!  Just every single day, and I was okay.

Lauren: You pushed through.

Rachel: Yes, and for some reason it just became the routine without [naps]. But I had to find other ways to take care of my body. And I think that's become even more important now that I have two kids. I guess I’ve found other ways, but now with two kids, [naps are] something that [are] totally off limits.

But I think you really feel like you are stronger than you think you are. Sometimes you put more limits on yourself, just out of fear.

I was scared because of the way I had to take care of my body then, because I wasn’t going to be able to do what I wanted to do. And I remember when I would took on my next job, and I was like, ‘Well, I don't know how I'm gonna do it. But then you said the same thing about your last job — and you did it.’ I was, like, ‘I don't know how I'm gonna do it with kids …how can I take a nap?’ And then I did it. So that's what I mean by not worrying about the limitations.

Lauren: Yeah, and just really focusing on what you want to do with your life. And purpose. And so using that as the impetus to really move forward with your life, rather than being stuck in the sort of feedback loop of ‘I'm disabled.’

Rachel: Yeah, and also just trying it. I tried it and my body actually was able to handle it.

Lauren: Right, and that raises the question of long-term — if you had stayed in news production, if you had stayed in that world … would you have been able to sustain that through your 30s and onwards? Now you've got your own company, so I would say … well, I would say you’re much more in control of your schedule. But it probably means you're even busier!

Rachel: Yes, I mean, it's my schedule, but it gets filled up much more quickly. I’m under much more stress now than I ever was before. But yes, it comes to the question of sustainability. But then finding things that work in this new schedule. Like…sometimes if I feel like I'm burning the bridge, I will drop my kids off at school, I will go to sleep for an hour, and then I will take the next train into the city.

Lauren: Yeah, so you're really listening to your body for the cues.

Rachel:  That's the thing … I have to. And when I don’t, that's when everything comes back and then I don't have the chance to choose.

When you live with a chronic condition, there are certain choices that you can make. And if you make them a lot of times, then you can get some control.

Lauren: Yeah, you understand the patterns. Now, you mentioned being pregnant. Did pregnancy affect your journey through this as well? Did you have flare-ups during pregnancy? Did the hormonal changes affect you?

Rachel: No, actually … and this is a lupus and mixed connective tissue thing … but many women feel much better.

Lauren: Well, that's what I’ve heard about lupus for sure.

Rachel: Yeah. And so, mine was pretty similar in that I felt really good. Well, not really good. I hated being pregnant! Hated everything about being pregnant.

Lauren: It was worth it for those girls, though! (laughs)

Rachel: Yeah, I know. But I hated being pregnant, and my body hurt all the time. But it had nothing to do with … it was a very different type of pain. I'm a small person and I was putting on more weight than I had ever been in my entire life. So that was not fun. But it was just more high-risk. I was a little under 30 when I was pregnant with my first daughter, so I wouldn't have been considered high-risk at that time. You would have looked at me and you would have been, like, why is she going to high-risk … But I had to go to the doctor once a week for a while.

Lauren: But that’s good because you had your team in place.

Rachel: And that was what was so hard when I moved and I had to find a new doctor. That anxiety! I don't know if you've ever felt this … I'm sure you have because you've moved across the country and around the world. But that anxiety of moving to a new place is not just, like, ‘Where am I going to live?’ But also, ‘Am I going to find a care team …’

Lauren: …who understands it, who gets it … And I imagine that something like unspecified or mixed connective tissue disease is also … we've talked about a lot of these conditions flying under the radar, but that's one that I hadn't even heard of.

Rachel: Well, it sounds like – not even real! I feel like the unspecific connective tissue is exactly not real. It's like, ‘We do not know how to diagnose you.’

Lauren: Yeah! It’s medical speak for ‘We don’t know, but you’re an ouchie!’

Rachel: Exactly! It’s like, 'We don't know, but you've had enough little markers here that aren’t right that we can claim that this is some sort of …’ Which sometimes makes me feel bad, being in some ways like a spokesperson for people with chronic conditions — because I'm borderline!

Lauren: But you’re living with chronic pain and you have to manage your symptoms. You are not giving yourself enough credit for the fact that you have a strong body and you can push through it, but you still do get these symptoms and so you have to be more careful than your average person.

Rachel: Yeah. And it's so easy to forget. It is so easy to forget.

Lauren: Well, especially when you're doing well. Now you did mention earlier that your mom already had a care team in place and that was already a huge help to you when you started feeling your symptoms. But aside from that team and ‘Dr. Gem’, did you find that you needed a personal advocate at any point in your journey to figuring out what was going on? And if so, how has that changed your relationship with that person, or people?

Rachel: Dr. Lockshin was kind of that advocate. What I found is that I couldn't rely on primary care providers, which was kind of crappy. I would just go to my rheumatologist for things, because my rheumatologist would be the one to know if the thing that I was experiencing was connected at all, or if I should go to a gastroenterologist. They were like my triage person. And that's hard because I was putting a lot of pressure on rheumatologists, you know, and they sometimes would say, ‘I don’t even remember what this is,’ because they don't see that very often. But for me, that was the way that I dealt with it, how I felt comfortable having that person as my advocate. My mom was a little bit of an advocate or like a touch point, which was really great. And then, my rheumatologist decided to retire. Which was a very scary moment for me, because he was the only person … he was an older gentleman, yet he would say, “Send me a picture of that rash.” When I was at home and wasn't sure if I wanted to make the trek all the way up to the Hospital for Special Surgery because my joints were hurting me. He would look at that and say, “Yes, I can get you in.” And so to be able to find someone like that, I knew was a gift. But thankfully he had trained somebody, and I built a relationship with her. And then she left, and I just moved with her to the new practice she was in — but not covered by insurance. So then you have to make these choices.

And I think that's another burden that people with invisible illnesses — or just illnesses — deal with … the cost of health care. And the choices you have to make, because of that.

Lauren: Yes, to make it work. For me, certainly when I got hit with autoimmune issues, it suddenly became this realization that the most important thing I could put my money into was my health. But I had to figure out where that money was coming from. And I think I've had this discussion with a lot of people in this community — because you do really have to make the choice, and you have to make that perspective shift, don't you, to say, ‘Okay, I have to invest in myself. If I'm going to invest in anything, the best thing to do is to invest in myself. But I have to find a way to make that work. And it doesn't always work in our system, the way it's designed.

Rachel: That's another thing … my mom has always said, you don't not do something. And my husband, too … if you're told you have to get an endoscopy, or you should get an endoscopy, or you need to get something removed or whatever — you just do it. But I still have a harder time. People around me have told me that … I mean, I do it. But I would do it quicker for other people than I would do it for myself.

Lauren: Sure. And, we always talk about the gender divide, because I think this is something that really does affect men and women differently in the sense that responsibility toward oneself is different with women. Do you think, especially being a mom, that [that] has an effect on your sense of responsibility for yourself — and your desire to take care of others first?

Rachel: I mean, it shouldn’t. I hear it from my mom and everyone else … that you can't be a good mom if you can't take care of yourself. And that’s a truism that isn't just something you should hang on your wall, but something that you should practice. However, when you have limited bandwidth, and limited numbers of hours in the day … and I'm running a business … and my kids are in daycare full-time, and someone needs to get a flu shot and somebody else needs to go in for a cough … and then I have to go get an eye doctor appointment … there's only so many times I can take off from work, times I can go to a doctor, so many co-pays that need to be paid. So it's like that same kind of concept … I'll just push myself to the back. And even with healthy people, that’s hard. I think what happens with me is that the number of doctors and number of different touch points that I have are just amplified. Plaquenil, for instance, has this thing called retinal toxicity. It’s a great drug. And it works for a lot of things. But there is this small chance that as the medicine builds up in your body, it can make you blind. It destroys your retina. Now, the chances of it are really small; and with people that are older, it's not really a risk because if you start taking it in your 50s and by the time it builds up, you’re in your 70s, and you start losing eyesight in your 80s … And yes, people are living longer, but that's really different from somebody who is diagnosed in their 20s … they're building up to toxicity by the time they're 50, 40 — and lose vision. So I'm supposed to go every year and get a retinal screening. It's been almost three years. I went the other day — finally! I decided I was going to just knock out all these doctors’ appointments. But that was three days’ worth of all these doctors’ appointments I had to knock out and I ended up feeling so guilty for and lost time for — because I had to do an endoscopy, and an eye check, and all of these things I know are necessary. And I need to know that I'm in the clear. But they're frustrating, and with these diseases there’s a lot of uncertainty. They'll come back and they'll say, “Yeah, this looks okay, but we need to check back in a year.”

Lauren: Yeah, so it's great  … more time at the doctor’s … more co-pays … more money and more time that don’t have!

Rachel: Exactly. And you get used to it, but there is definitely that frustration that builds up.

Lauren: Absolutely. And has it ever turned from frustration into anger toward others, because they're taking priority over you? Or you've just always felt like they are the priority?

Rachel: I've never been resentful for my loved ones.

Sometimes I've been angered in general at the world … like, you just float through life unaware of what a burden this is. You're so lucky, and you don't realize how lucky you are. But I've never been resentful.

Because I'm just taking care of them the way they should be taken care of. I don't think I'm doing anything above and beyond. I'm just being a mom, or I'm just supporting my husband.

Lauren: I don't know … I think being a mom is pretty above and beyond!  It's a conscious decision that people have to make, especially when you only have so many spoons. To say, ‘I’m now going to bring a life into this world and that life is my responsibility’ … you know? That's huge. It's a huge decision!

Rachel: It’s a crazy decision whether or not you're a spoonie. Then add a spoonie who also runs your own business, a fast growth, multi-employee company.  Then add two children. It's bananas. Only crazy people do this! But I think all of those things make me better at the other thing.

Lauren: That's a really great way of looking at it, like it actually adds to your strength.

Rachel: I wasn't aware of how strong I was until I did all of these things.

Lauren: Yeah, and I like that you could keep taking them.

Rachel: In some ways I thrive. I need, like you said, the things that you do for yourself. I need to be intellectually stimulated. The more my mind is working and problem solving, the sharper I feel. The more I’m with my children, who are teaching me patience and teaching me joviality and filling me with cuddles, the better I am at being a business person.

Lauren: Yeah, you’re balancing.

Rachel: My time management, for instance … while needing improvement, is still more in line. Like working better, as opposed to working longer.

Lauren: And you know what your priorities are within that time management.

Rachel: Right, and then within my disease, or my spoons, I have other people reminding me why it's important to take care of myself. Because when I reach that point, like I did last Friday or something, I was, like, ‘I can't take care of any of this.’ I don't like that feeling.

Lauren: No, but when that happens to you, who do you lean on? Do you lean on your husband?

Rachel: Yeah, I lean on my husband. I lean a little bit on myself in those times. Like I said, and you've been through that …my mom, my sister. My husband's been really, really great with that, in a way when I was looking for a partner, I wouldn't have expected. It’s not like I was diagnosed then … I had been living with it, but in the times when I got sick, he was the one reminding me to take care of myself. He is like me in that we're always working on so many things at the same time. He's working even faster than I am many times. And so it’s tempting for me to try to keep up with him. That’s where the problem is … sometimes I can’t, and I feel guilty over that.

When you ask where the guilt or resentment comes in, maybe it’s that. I feel like I should be able to go non-stop. I feel like I should be able to not have to go to all of these doctors. I feel like I should be able to not have to take naps.

Lauren: So it's a constant recalibration, not only physically, but also emotionally.

Rachel: Yeah. And unnecessary competition … competition that I set up for myself.

Lauren: Sure. But you have to keep reminding yourself and keep the lessons that you've learned in your heart. You have to remind yourself.

Rachel: Yes, and also just how that fits in the spectrum of things. So if you can work really well, it doesn't have to be until four o'clock in the morning. Does that make sense?

Lauren: Yeah, it's that 'working smarter, not harder.’

Rachel: Right. And I feel that it's even more important for me, or somebody who's living with a chronic illness or chronic disability, to really embrace that.

What you able to accomplish is enough and nobody else is judging it other than you. You are your biggest critic.

Lauren: Yeah. Now, you've talked a lot about balancing work and life. Have you ever been in a situation where you've had to justify your illness to other people who just didn't understand it?

Rachel: One was when I was at a study abroad program in college and living in southern France. My roommate at the time, who was great — both her parents were doctors, I think, if I remember  — and I remember having to take a nap or something. And I remember her saying, “My dad says that's not a real thing.”

Lauren: What, the napping? Or that you needed the nap because you had a condition?

Rachel: I think it was the connective tissue disease in general … something to do with my illness.

Lauren: He sounds so compassionate!

Rachel: Well, but here's the thing … I kind of look at it this way …

It's broken. Somewhere along the line, it’s broken.

And we were still at a young enough age where what your parents say, you take. And you’re trying to find your own position of authority. We should come from a position where, like, people are telling the truth, not people are lying.

But that, to me, was very alarming, and set me thinking, ‘Oh my gosh, do people – just by default – think that I'm making this up? And who would choose to make this up? And what about the rest of my personality or my character?’

It makes you think. This is not an attention thing. Also, there are a lot of other ways people can get attention rather than napping every day. So I think that that was one thing. And I remember really struggling with it, because I was just a child. Plus coming to terms with it myself. And not even quite sure it was real, because it was not even a real thing according to doctors!

Lauren: Or according to her father!

Rachel: Yes, according to her father. But also according to the medical code. There’s a difference between sheer curiosity, and then judgment. I'm willing to speak till I'm blue in the face with people who are truly curious, if you’re coming in with an open mind. But people who are coming in already with judgment, unless they can lay that judgment out and acknowledge it, it's really hard to engage around an illness. In terms of other justification, no …

Lauren: No discrimination in the workplace? Because you've managed to push through?

Rachel: No, I think the judgment has been self-imposed. I think all of my judgment has been self-imposed. I run a company with a lot of people below me and I wonder always, Am I working hard enough? Am I doing enough? Am I delivering enough? Am I going to too many doctors? What are they thinking that I went to the doctor again today? Should I be telling them? Should I not be telling them? Is it better? And I mean, I run a company dedicated to reimagining chronic pain care. And I built my team of people and I hope they would feel comfortable to take care of themselves the same way.

But no, I faced a lot more discrimination after having a child than I did around my illness. That’s for another day!

Lauren: Oh, wow. So that’s for another day, or, that’s for a different podcast! Let's talk about Ouchie … because your mission creating the app and creating Upside Health has come out of your own experience. And in that sense, is very heart-centered. So tell us a little bit about the app and about what you're doing in development.

Rachel: Yeah, so as I mentioned in the beginning of the pod, I was really lucky when I was diagnosed. Not just because my mom has lupus, but my step-brother has cystic fibrosis. And my step-brother is a beast. I mean, he taught me, even as much as my mom, how to live with a chronic condition and not be controlled by it. And how to do that. And how important self-care is. And I don't listen to it as much as I should. But he is like the master of it. My mom is pretty good at it, too. And they also taught me about being able to navigate complex health systems and how to become an advocate for yourself. And also how to educate yourself around all of the variety of treatments that are available. And then also how to feel empowered. And then I thought, ‘How do I scale this and scale this in a way that also could create more and better patient/clinician relationships?’ Because, like I said, I was really lucky to have found this match, but it was because my provider was inherently attuned to patients like me, and was educated — or was just like that. So how could I provide other clinicians with the tools that are necessary for them to help others — given the constraints of society — like, things aren't reimbursed the same way.

And so I created what we call a mobile companion for pain management … the app, Ouchie.  And it is our mission to ensure that no one hurts alone.

Lauren: So really to create community where people may be lacking that.

Rachel: But no one hurts alone is more than just community.You have a care team that is ensuring that you're not hurting alone. You are finding ways to maybe reduce how you are hurting. That you're connecting with others. And then through the application itself, you’re getting rewarded for your daily accomplishments.

Lauren: I've recommended the app to a few friends, and I know some of them have really enjoyed that! Like getting a gold star kind of thing.

Rachel: Or actual prizes. We send out wellness packs, and Amazon gift cards, and real things — so that you know that you have a cheer team behind you. And until you find a place, or even after you find a place where you feel good, there's going to be bad days and you're not alone on those bad days. And that support can come from an app, and a community, or it can come from the two of those things together. Or it can come from you seeing how far you've come. Or seeing what's worked for you in the past, and feeling confident in returning to it.

Lauren: And I imagine so much of your own experience also informed the design of the app and the ways in which you offer management skills.

Rachel: Yes, a lot of it is my own experience; a lot of it is just based off evidence-backed research on the power of cognitive behavioral therapy and refocusing. So we ask a lot of questions every time you update … like, “What are you most proud of today? What was a kind act that someone did for you? What's a kind act you did for somebody else? How can we support you? What's one new thing you're going to try to improve your self-care?” To really put the focus on what is possible, what you've been able to do, and kind of stay away from the unknown.

Lauren: It’s just such a lovely mission that you have, and it's so wonderful that you're giving back — you're someone who's gone through hell with your body and decided, ‘Well, I'm going to do something with that,’ instead of just sitting on it.

Rachel: Shout out! Shout out! It's free. It works on iOS, Android and tablet. And it's also compatible to screen readers. So if you're listening and have some vision impairment or difficulty …

Lauren: That's amazing. Wow, that's really smart. So this is the thing … so many of us, I find, in this community … we get to a point psychologically where we’re, like, ‘I can't just be sick. There has to be a reason why I've had these symptoms and I have this illness.’ And I think a lot of integrative and functional medicine doctors end up in that field because they've been sick themselves. I think we really want to share in that community and be able to contribute productively so that those of us who've had to experience a learning curve can pass on our knowledge … and I think it’s wonderful that you're doing that and hopefully more people will hear about the app, because of this! You did mention your step-brother and how he's taught you so many lessons. I'm curious to know whether you've ever felt, between your mother and your step-brother, that you've had to adjust theway that you're living your life to help take care of them as well. Because you're not only someone who suffers from chronic invisible illness, you are also a loved one of people who do as well. So how has that impacted your relationships with them?

Rachel: My mom was a lot sicker when I was younger than she is today … so a lot of chemo, a lot of IVIG.

Lauren: Did she have cancer as well?

Rachel: No, they treat lupus with chemo a lot of times.

Lauren: That I've never heard … wow.

Rachel: So it was less me taking care of her, more me just adjusting to a different childhood than many others. She never missed anything; I don't know. She was always at everything that was important to me. She used to wait at the bus stop with us every morning. It was just this acknowledgement that, sometimes if my grandparents were at the bus stop, that meant my mom had to go to the hospital.

Lauren: Which was not normal, obviously.

Rachel: Right. But it was my normal. And there was a lot of stepping up to help take care of my little sister. Doing things like that. But it didn't feel different. It gave me, at a very young age, a great knowledge of the health system! I didn’t realize how well I knew what happens when you get a blood draw … or how you treat kidney stones.

By the time I was ready for high school, or out of high school, I felt like I was already halfway on my way to becoming an MD! Just my sheer knowledge. Between having a step-brother in the house with cystic fibrosis, and a mom with lupus …

Lauren: And your own issues.

Rachel: And my own issues.  I was, like, ‘Oh, this is what a prep is.’  And, ‘This is how you deal with chemo after-effects.’ And people would say, “Are you a nurse? Are you a doctor?”

Lauren: No, I just live in this family!

Rachel: But it was a strength more so than anything else.

Lauren: I do love that perspective. Because we keep coming back to that. In all of this discussion, everything comes back to, for you it seems, embracing these chronic conditions as, like, superpowers. That they are the thing that makes you stronger, and the thing worth being stronger for. And I think that's a really beautiful perspective to have. And I think you have to be in the right place mentally to find [that perspective]. I think there are a lot of people who get sick, or they feel really sick — and they go down the hole.

Rachel: And it's not always like that.

Chronic pain is so universal for so many people.

And like I said, I can't represent that because I don't know what it's like for everyone. I had a debilitating migraine on Friday. And I thought: ‘There are people who live with this every single day. How can I possibly speak for them on my app? Am I doing them justice? Am I providing any sort of relief?’

Lauren: But that kind of empathy is not universal, either. You can give yourself some credit, too, for having compassion for others.

Rachel: Yeah.

And that's my superpower, if anything … using empathy to drive my decisions.

But I find that's a challenge that I have. I feel like so many people have more superpowers than I do. But I do like to tell my kids when they get vaccines, or whenever they get any sort of thing … I tell them they've got superpowers. Because really, a measles vaccine is a superpower! They've given their body the ability to fight off something that, years ago, people would have died from.

Lauren: That’s an amazing way to look at it.

Rachel: I’m, like, “Do you want to go get your superpowers?”

Lauren: You’re raising Wonder Women!

Rachel: Yes. But to say that I have superpowers over something like this … maybe not! But I think that I feel like I have to.

I feel like I have to keep moving forward. Because I've seen the impact that our app has had on people already. And is using this tone, this tone of support, this tone of moving forward, this tone of not ignoring the fact that there's going to be bad days but just moving through them. It's okay to be f*cking angry. And it's okay to have a f*cking bad day, or to be just beyond frustrated — and acknowledge that.

And not saying, “… and then move on to the next thing…” Because that's not correct. But there will be a next day. And there is opportunity in the next day for it to be slightly different. And the other thing that this job has taught me, and why I'm grateful that I started it, is that it's made me really hopeful. Because there are so many patients who have seen doctors, like I said, who don't believe them. Or feel like there's nothing being done. They are stuck in this forever. I go to these conferences, these research conferences, and the findings that they're coming out with are just mindboggling and exciting and enticing. And I think, there are thousands of people — there should be more! — who are making small little discoveries about things that could work or could have huge implications. And so if we keep pushing, and we keep waiting, there will be change and there will be something better. And then there are also a lot of people … when I tell them what we're doing, they say, “Could I have that for my patient?”

There are great doctors out there. There are great nurses. It's just about finding the right fit for you. And like I said, having some compassion and hoping the compassion will be returned. A lot of them are so handcuffed for time and for resources. And for what is covered and what they can give you and offering you a suggestion for something that you're never going to be able to afford. To summarize, it's given me a ton of hope. Hope for patients, for the future of chronic pain. So when you're driven by that much hope, when you're driven by people who say that what you're doing is making an impact … you keep on doing it.

And you push yourself a little too hard sometimes. And then you remind yourself … wait, no, I'm doing this for people like me. I do need to take care of myself! And then you … move in circles.

Lauren: Well, Rachel, you've given us so much wonderful information. And I'm so amazed at what you do. I think it's just so admirable.

Rachel: Thank you.

Lauren: As everyone knows, at this point, I like to wrap up the episode with your top three lists. I want to know what your top three tips would be for someone who suspects they may have something off, and may be dealing with invisible chronic illness. What would you say to them (aside from downloading Ouchie if you have chronic pain)?

Rachel: Well, if you suspect something, you can download the app and start tracking.  What you can track is: your pain, your mood, your sleep, your medications. We are adding weather and all those things soon so you can see if there [are] any trends to what you’re experiencing. And then when you eventually do go to the doctor, you'll have this record. So you're not trying to blindly remember. But not just to plug my product! I guess it really depends on what type of illness it is. I would say, find the appropriate doctor or the specialist, and make sure you feel really comfortable with him or her. And the tests that are coming back … make sure you get a copy of the lab results for yourself. So you can go on to a patient portal and just make sure you have them. That way, if you ever want to get a second opinion, or even if you want to become educated yourself about what are the tests that were given to me? What could they mean? Not necessarily going down like a Google rabbit hole, because that's also super dangerous … but getting some sort of cognizance, even finding a friend of yours that's a doctor to explain to you in non-medical speak, in English — not in a three-minute office visit –what this means. Great doctors, I think, are the ones that always examine and then bring you back to their office to talk.

Lauren: Yes. Agreed. Or take more than the allotted time …I think it’s maybe five to eight minutes per patient.

Rachel: Fifteen minutes.

Lauren: Is it 15 minutes .… for some of us, there are more complex things going on. And it's not an annual physical. So being able to step away and then come back … the doctors who spend time.

Rachel: Right. So that would be one.

And then … don't Google, don't Google, don't Google. Talk to other people who have experienced it, and people in real life, too. I wouldn't just go on to a forum that's not moderated because you don't know how old it is.

And then the third thing would be, set treatment goals for yourself.

Lauren: So what does that look like, more specifically?

Rachel: Particularly if you've just been diagnosed with a chronic condition, don't set the goal necessarily for it to go away, for the disease to go away. It just not realistic. Set a goal: What are some of your biggest problems that it's been causing for you? What are some things – maybe physical limitations – that you'd like to go away?  Like, do you want to be able to exercise again? Or do you want to be able to take a cooking class? Whatever it may be. Maybe you want to take less medication; maybe that's your goal, to take less medication. Set them and then you'll know what you're going into.

Lauren: You can map progress.

Rachel: Yeah, and this will be tied to specific things. And then if you do those things, and you don't still feel like you're feeling any better, you can say, ‘Oh, wait, but it doesn't matter if I'm not feeling better. I'm doing things that I wasn't able to do before.’ Because we get so used to a certain pain level in our mind; and when we focus on that, that's all we can focus on. So I think that that's really important.

Lauren: I love those tips. I think that's really wonderful. And I know that you're aware of certain adjustments you need to make — like, if you eat a certain thing and you feel off, or if you push yourself too hard in a certain way. And you need to recalibrate. Do you have any guilty pleasures or secret indulgences, or even comfort activities that you go to when you have a flare-up? What would your top three be in that category?

Rachel: Okay …!

Lauren: I know, it's very broad!

Rachel: So my top three are … one: I watch really bad game shows, like old game shows … To Tell the Truth, or Steve Harvey’s Celebrity Family Feud…because they require zero brainpower. But they are very distracting. And if they are using brainpower, they're using a part of my brain that isn't circulating. Because a lot of times when I'm in a flare, my mind is thinking about how bad it’s going to get. Or, is this escalating into something else that's never happened before?

Lauren: And you get into a spiral.

Rachel: Yeah. And rather than really just focusing on that … if I'm going to be sitting in bed and not having a great day or a great night, it’s really good because there's absolutely nothing, no anxiety.  There's some cheap laughs; no emotional storyline, which is good. So that's one. Two: I try to get a therapeutic massage, and I should be doing more. For me, other types of adjustments and stuff don't work; they have a counter-effect, but I know that this can provide me with some joint relief.

Lauren: When you talk about therapeutic massage, are you going to a spa? Or are you going to a physical therapist’s office where there's a masseuse who is more attuned to specific bodily conditions?

Rachel: It depends. I'm just trying to find my right person. If it's a spa, I ask for someone that has experience with trigger point therapy. Sometimes I'll go to a cheap place in Chinatown where they do Qigong and pressure point therapy. That kind of thing works really well on me. I don't really care where, although I'd love to be able to find some place regularly so I'm doing it proactively instead of reactively. And then, I do try to become more cognizant of what I'm eating. And see if …there's something that's triggering [digestive issues]. But a lot of times, if I'm having a flare, I'm having stomach stuff too where I'm not that hungry. So I just make sure that I'm eating, whatever I'm eating, because a lot of times, I'll lose weight.

Lauren: Well, you're pretty petite to begin with.

Rachel: That's one of the signs that I’m having a flare a lot of times. And so, I’ll be, like, ‘All right, you know, just eat crap. Just make sure that you're filling your body because you can't fight against anything.’ But that's really unique to me. And then sometimes I make sure I'm setting up a therapy appointment.

Lauren: Yeah, therapy. I'm a big believer.  Take care of the mind and the bodybecause they go together. that's great.

Rachel: Oh…then…this is not really a top three … but if I'm starting to feel a flare come on, or I'm in the middle of one, I will take a full day and sleep. It’s really hard. It’s so hard. I might wake up feeling even worse than I did before. That happens a lot. I don't know if you've ever had that.

Lauren: Yes, it’s almost like sleep hangover.

Rachel: But … it’ll make a huge difference a couple of days later.

Lauren: Yeah, absolutely. Well, Rachel … I can't thank you enough. This has been such a great chat. I'm so glad that we've been able to talk about what's going on with you. It's amazing, because for those who don't know, I've known Rachel for years and didn't really know about this until … we started talking about it recently, because I started the podcast and she's doing the app. And so it's just great to not only get to know you better but also to facilitate the sharing of your story.

Rachel: That is what's crazy about invisible illnesses. I like the name, and I don't a little bit.

Lauren: It’s the “illness” part I struggle with, actually. The “invisible” part, not so much.

Rachel: But yeah, but for some reason, I feel like people think of invisible illness as so much smaller than it is, but it's so big.

First of all, for years, I didn't even realize that there were other people that were going through this.

And no one knew. And I wondered, ‘Is it better or is it worse?’ But it is really nice to have these conversations about the challenges of co-pays and these decisions you have to make; and you're not alone and that you struggle with the same things … do I take disability, or can I stop working? I think that support … especially among people who would normally think, ‘How am I having these conversations at this age?’ And there are users on our app who are, like, ‘My doctor thinks I'm too young to apply for disability, but I don't know how I can …’

Lauren: How can you work to live if you can't work?

Rachel: Exactly, but I can't work anymore, and to be able to connect with other people, especially when you're young … not especially when you’re young because you can run into this at any age … but it’s especially isolating.

Lauren: And it shows how important community is when you are hurting, whether it's psychological or physical or a combination of both. Again, thank you so much. I'm so glad to have had you on the show today. And I can't wait for everyone to hear your story. Guys, get on that app! Check out Ouchie, it’s free! So go look it up. On the App Store. Thanks so much, Rachel.