Transcript

Lauren: Hi guys! Thank you for joining us!

Emily and Kate: Thank you for having us! This is our first podcast.

Lauren: I'm here with Em and Kate, from Two Being Healthy. They are sisters who are based in Southern California. And they live with multiple invisible illnesses, which I'm going to have them tell us all about. But these are some contacts whom I actually made because of Instagram!

Em: Social media, yeah.

Lauren: Social media is incredible! I'm so glad to have you on the show. Thanks so much for joining us, ladies! So I'm not sure which of you would prefer to start us with your journey …

Em: I can start.

Lauren: Okay, Em, tell us what invisible illnesses you live with, and how you first found out you had them.

Em: So, Kate and I actually have very similar illnesses. We both have lupus; postural orthostatic tachycardia syndrome, or POTS, as it's known; Ehlers-Danlos; and mast cell activation disorder. And then I have muscle myositis on top of that; but other than that, we're pretty identical in what we have.

Lauren: So you guys have been able to be each other's support.

Kate: Completely.

Em: 1,000%, yes.

Lauren: So tell us a little bit about these conditions. And Kate, do you want to jump in and tell us what you have as well?

Kate: Yeah, so I have the same. The nice thing is, Emily was diagnosed with the lupus — kind of more autoimmune — first. So I was able to identify my symptoms. Then I was diagnosed with POTS first.

Em: And I was, like, this is similar to what I have.

Kate: So we kind of mirrored each other. She had the autoimmune lupus thing, and I realized I had very similar — the fatigue, joint aches. And this was around the same time, we were both around 17. Emily's a couple of years older, so I was kind of watching her go through this and then I realized I had very similar issues. Then a little bit later, I get the POTS symptoms coming, along with the autoimmune, and then Emily realizes ... ‘Oh, I'm getting this as well.’ And then she got diagnosed.

Em: I got diagnosed at 17 with lupus — after months and months of inconsistently being sick and then feeling kind of okay, and just getting really sick again with something I knew wasn't a typical flu or cold. It was really severe nausea, confined to my bed. But then it would last a couple of days and then would get better, and then I'd be out again. And then one day, it just hit and then it did not get better. And that's when we were on the hunt for doctors for lupus.

Lauren: With lupus in particular, people have flu-like symptoms, right?

Em: Yeah, it just kind of felt like a flu that didn't get better. It was that horrible feeling when you're like, ‘Oh God, I'm dying,’ and you know you're not, but you just can't really say what's wrong. You just feel so sick. But it's without any fever or without any congestion, without any clear cold- or flu-like typical symptoms, no chills. And it was lasting so long, so I knew it wasn't the typical virus that gets better. And then once it hit, and I was in bed, then we were, “Okay, we need to figure out what actually is happening; we need to find a doctor that we can turn to and figure out this puzzle.” And from there, Kate was diagnosed a little later with autoimmune. And then she got the POTS and I had very similar. So, POTS is very low blood pressure, your blood doesn't circulate well; it pools to the bottom half of your body when you stand. So a lot of times, people will stand up and faint, blackout; you have a really hard time being upright.

Kate: Yeah, so that's what I had, too — the super bad tachycardia, which also for me … Emily doesn't have this as much … bad stomach issues. Gastro issues. I was throwing up as well. I was throwing up a lot. Emily remembers that —we’d be going out, I'd stand up, and yeah — Emily's phobic of that.

Em: I remember being at the mall, and just suddenly … ‘Oh my gosh, I'm so sick.’ And I would be in a panic. Like, what is happening?

Kate: It hit my stomach more, and Emily has the muscle issues … so we have very identical issues and the little offshoots are a bit different of course, and different medications work for her that don't work for me. So it's just been a learning process, to see what works for Emily, what works for me, and treatment-wise and therapies … everything.

Em: Because we have different medications for similar issues.

Kate: Exactly.

Em: I just respond differently.

Lauren: So these conditions, for the most part, appear to also be very much genetic, right?

Em: Very much.

Lauren: So you both have the genes for the conditions that you have. So it makes sense that you guys both have these illnesses. But it’s very interesting that you're using different treatments. Can you talk a little bit about the treatments that you're using for your symptoms, as well?

Em: Sure.

So I think most people with autoimmune will know that the medication side of things is a journey that just doesn't really stop. It's never-ending.

Adjusting to this pill … okay, I'm adjusted … now this one's not really working … now we need to switch and go on this pill. Basically every time we're in the doctor’s, we're updating the medical chart — what pills we're now on — because it just shifts so frequently. But the kind of standard one since being diagnosed is an autoimmune suppressant to just calm down the autoimmune side of things.

Lauren: To get the antibodies down.

Em: Yes. So that's been a constant, but everything else, honestly, shifts so much.

Lauren: Because so much of what you guys are experiencing manifests physically in ways where there are lots of different treatments, right? What’s great about your blog is that you guys are sharing everything that you're doing in your treatments — so whether it's something like massage, or heat therapy, or anything like that for muscular issues.

Em: Yes, we wanted to try to showcase … "Okay, we're trying this. This might not work. We're not swearing by it. It works for us, but … "

Kate: Yes, and something might work for Em that doesn't work for me.

I have a cytochrome mutation. Emily does, too.

So, we got that tested, because I was having such bad reactions to medications and was constantly in and out of the ER. So that's been something, too … we had to have our cytochromes tested; our cardiologist recommended that to me and it’s really easy.

Em: So yeah ...

I would recommend anyone who is dealing with extreme reactions to medication, to ask to get their cytochromes tested ...

... because there are some pills that …

Kate: … you metabolize differently.

Em: It might have the effect as if you're taking five of them; just how you break it down. Or you take one, and you might get a fourth of the strength. So it has been very helpful to get that tested. I would recommend anyone who has a little inconsistency with pills and reactions, just test that out.

Lauren: Maybe that, and MTHFR … I don't know if you guys have been tested for that as well. But that's one of those genetic mutations where, unless certain things that you take are methylated, you won’t absorb them. A lot of us with autoimmune issues have that.

Em: Yes, it’s amazing. It really is.

Lauren: Okay, so we talked a little bit about the lupus and the POTS. Tell us also about mast cell and everything else that you've got going on.

Kate: Yeah. So, for me, what kind of snowballed with the whole POTS thing with the mast cell, EDS, everything. And then, as everything else progressed, Emily was, like, “Yes, red flag. I have this … I have this … I have this.”

Em: Tell how you were diagnosed with mast cell.

Kate: Yeah, so I saw an amazing cardiologist who specializes in POTS, and he was seeing so many of his patients experiencing these reactions. Flushed cheeks, itching, I got rashes and I was getting so sensitive. I couldn't find a pattern. I was trying gluten-free, dairy-free. But then I'd be fine with certain dairies; I couldn't find an exact, pinpoint pattern. And it was complete flushing, itching, and kind of just like an out-of-my-body, crawling experience. If I’d eat something, my throat would tighten up and burn.

So it was a really confusing time in my life. I was getting almost anxious with it. I felt like I was almost making it up. I felt like the OCD just heightened so tremendously for me.

Lauren: That’s true with any of these illnesses. The fact that you guys have got not just the one … or two … it’s like you won the lottery!

Kate: And they all kind of overlap so that you don't really know what is causing what. My cardiologist had brought up mast cell; I’d never heard of it before.

He introduced me to a patient, and she came into one of my appointments and mapped out what mast cell meant for her … how she started a low-histamine diet, which kind of has eliminated, I felt like, 99% [better].

Em: A low-histamine diet is very intimidating because it basically eliminates everything that we love.

Kate: Yeah.

Em: Spices, coffee … It’s a lot.

Lauren: Tell us a bit about mast cell and what it looks like and how it behaves.

Kate: It reacts differently for different people.  Some foods, I am okay with; some foods, Emily reacts to.

Everyone has histamine in their body. We produce more; we have a higher histamine level in our body right now.

Em: We don't break it down as easily.

Kate: Yeah, we don't break it down as easily. So the biggest thing was diet. Instantly. I mean, I took that list, I went home … luckily my mom was able to help because it's overwhelming, even reading online. Different websites are saying this food’s okay, this food’s not okay. So you have to see what works for you.

So I kind of went with … instead of looking at what you can't eat, I would look at what I can eat.

Just a very simple list of, basically, rice … really simple In the beginning. I did that for about a month, and within two days I felt such a difference. It was insanely overwhelming … like, wow … my body felt like it just calmed down.

Em: I remember we were out, and you just got a simple green juice — but it had spinach, and spinach is really high histamine, and you were, like, “My throat feels like it's closing up and burning.” And we were, like, “What is going on, because it's just a simple green juice.”

Kate: Yeah, and I used to eat that all the time … stuff that I didn't have issues with and all a sudden, because my histamine levels were up …

Em: And you think you’re eating very healthy … and you’re having horrible reactions.

Kate: Cutting the low histamine without medication, and we did add medications. Cromolyn sodium is one that people take; or an H1 or H2 blocker, so that will be like a Zyrtec antihistamine. Just simple things like that. It made such a difference for me. And then Emily found out that she had it also.

And my mom … it's all genetic … she also realized, “Wow, I've been having these symptoms since I was in my 20s.”

She went on low-histamine and found the biggest difference. So it was such a simple thing to do. And now we know if we splurge and break from that, we're gonna have a little reaction. So if I have flushing or a little bit of a rash, I know what it's from. I know how to bring that histamine level lower. Okay, some dairies I can't have, and some nuts I can't have — but it’s not the whole food group. And that was the confusing thing because I knew some things I could have, some things I couldn't have. And it was so random that you feel like you're almost completely lost.

Em: And the thing they explained that was really helpful because it's so overwhelming in the beginning, is … picture it like a cup … you're never going to have no histamine. Because you get it from the sun, you get it from working out. It's basically in every food we eat. But as long as the cup is not overflowing, you should be okay. So, that has helped a lot … okay, we can have some. It's just as long as we're not having excess amounts, we're not going to experience those really rough symptoms.

Lauren: And it sounds, also, because you can really manage the mast cell activation disorder with diet mainly, with perhaps the exception of using some of those histamine blockers … because you can really control it with diet, it sounds like that makes it also, in a way, more manageable, medically speaking, right?

Em: Completely. Any time you can deal with something without doing extreme measures, without medication, is great.

Kate: Yeah. And we were much more extreme in the beginning, and slowly would introduce food into that small group, one at a time. So you're not overwhelming your histamine system, and you realize, ‘Okay, I can do that … I’ll be fine with that next time.’ I'm not good with cashews, and certain other things — but Emily might be.

Em: I remember, when we were initially diagnosed, you wouldn't eat out at any restaurant.

Kate: Yes, I kind of just had this … almost, anxiety … because I had had so many bad reactions and so many emergency room trips, that you just …

Em: You just don’t trust anything.

Kate: Exactly.

So I just got really paranoid. But now I've let that go a little bit. I know my limitations, but it's hard to slowly break that wall down when you're living in this kind of fearful state.

Lauren: Absolutely. But what’s great is that you guys have always had each other and you’ve had your mom, too.

Kate: Yeah, I think just through us going through this journey, she's realized so many similarities that she's had, when she was younger, and POTS wasn't diagnosed then. They put her on anxiety medicine, which so many people with POTS …

Em: … are misdiagnosed. Because your heart goes fast.

Kate: And she happened just through trial and error to be on medications that we're on now, and to treat what we now know is a slight version of POTS and autoimmune issues. So, definitely genetic, for our family especially!

Lauren: Also because you guys have so many of these disorders that have piled up, right? Are you coming across other patients who have a similar history where there is not one, not two …?

Em: Oh, yeah.

I think just even since starting the blog and Instagram and saying what we have, there's so many people … if they have POTS, they also have EDS (Ehlers-Danlos); they also have mast cell or some sort of autoimmune thing going on.

Kate: Stomach issues. I get chronic migraine, so I get that treated as well. So it's all connected. It's all within that bubble. And most people, if you look at the percentages, have variations; it’s not just POTS usually.

Em: Yeah, if you have POTS, there's a huge percentage who have Ehlers-Danlos and mast cell as well.  We are very lucky to have our cardiologist who is such a specialist in POTS, because otherwise we never would have known what mast cell was and we would have kept eating “healthy” foods and kept making it worse.

So if you have POTS, and no one's mentioned mast cell to you … check it out. It's been a huge game changer.

Lauren: And tell us also about Ehlers-Danlos, and how you got that diagnosed as well.

Em: So we're both extremely … Kate not so much … but I'm super, super flexible. I was really into yoga, and things were kind of popping out all the time. And same for Kate … it wasn't really unusual to us to be, like, "Oh, my shoulder popped out.”

Kate: As teenagers growing up, we were constantly at the beach and in the sand would twist an ankle. We played sports, Emily more than me, and we were constantly in casts. We thought it was normal. Our rheumatologist would bend us around and hear popping constantly. I think I even had a dislocated hip when I was born. I remember my mom would tell me she would be holding my hand crossing the street, and my elbow would dislocate. So we've always had the signs for it, but it had a normalcy. We know now … Emily says yoga, we don't do yoga any more.

Em: I had to give up yoga. We used to be taped, to stay in place a little bit. Hindsight is 2020 … it's like, oh, obviously, there's some kind of connective tissue thing going on.

Lauren: So how do you manage physical activity now? You said that you don't do yoga anymore, but are there strength training exercises or things like Pilates that you can do safely?

Kate: Yes. Mat Pilates, which is one of my favorite forms of exercise. We now know our limitations. Like, I know if I extend — especially my left shoulder, certain angles — it's going to pop out. The thing with POTS, too … they want you to do strength training, they want you to exercise. So we do recumbent bike or light exercises that hold our smaller muscles into place. I have it especially with my shoulder, so little things that strengthen it, so my muscles will keep it tighter; the same with our hips and knees as well. So we do definitely exercise; it’s just modifications that work for us.

Em: And the thing with POTS is, your blood vessels aren't constricting properly to push the blood back up into your body. So exercise is to kind of train your body and train the blood vessels to send the blood up where it needs to go. But they also stress that you need to start by exercising a minute a day, and then go to two minutes and then go to three minutes.

Kate: Very slowly.

Em: It’s typical with POTS that you think, ‘I feel so good today. I'm going to go work out for 45 minutes and push myself.’ And then for the next five days, you can't get up out of bed. So even if you feel great, only increase by a minute at a time, and then just kind of try to keep that consistency and try to train your body how to circulate the blood.

Lauren: So it sounds like ultimately … and you guys are all cool with it now … you’ve had to make some huge adjustments with your lives day to day. And in terms of those adjustments, and the emotional impact that it had on you guys, have you found that you've been, like, ‘All right, that's it. I'm going to therapy,’ or having each other — what’s been your coping mechanism through all of that?

Em: Yeah, actually, I just recently started therapy because even though I've had this for 10-plus years, it's difficult every day. And especially since you can't help but kind of compare to what your peers are doing. You know, logically, okay, this is a different journey than everyone else. I have all these struggles that maybe this person my age wouldn’t have. It's difficult.

I'm a therapy advocate anyway; I think everyone should go and talk, and it's a great release. We’re taking care of our body … we need to take care of our mind as well. But no one's going to go through a thing that affects their health for so long, and so significantly, and not dealing with a tremendous amount of emotional stuff with it.

Kate: Like everything else that we've had, it fluctuates. You go through stages where you're feeling really good, and then you’ll have a setback; even the flu will set us back. And you get discouraged, and think, ‘Okay, now I’ve got to start five steps back to where I was and slowly build up again.’ So, yeah, you get that exhausting thing over again, but we have each other — which has been amazing support.

Em: And I will say ...

... even though it's difficult emotionally going through this, the hardest time for sure was before I was diagnosed ...

... or before we were diagnosed with this extra condition. I feel for anyone who is not diagnosed right now and is going through a bunch of symptoms and they know something's wrong. Because once you have a diagnosis … okay, I'm on a path, I have a plan, I know the symptoms fit with this title … having symptoms that are wrecking havoc on your life and not having a title, not having a trail to follow … that was emotionally the most difficult because you're so lost, you're so overwhelmed. You feel this pressure to find out what's wrong with you — when it's not on you, it’s on a doctor. That's the hardest part.

Lauren: You’ve talked about comparing your activity levels and lifestyles to other people’s. There's also that grieving process you have to go through where you have to let go of what you thought your body could do, and what your body can do — which, in some ways - it opens up new new pathways, because of the changes that you have to take into account.

Em: Completely. I think it was something, during my college years, that I thought about much more.  It would be like, ‘Oh, why can't I go and party all night … and do this …?’ Now it's much more, ‘Okay. I feel like I need to look at those around me and say, I have no idea what their journey is.’ You can't really tell, and I put that into practice a lot more than when I was younger.

You look at someone and go, ‘Oh, they can do all this. They're fine.’ And now you realize, ‘Well, they probably looked at me and thought a very similar thing. And that wasn't accurate at all.’ That's just kind of come with time.

Lauren: That removal of judgment. Which is a great place to be, right? I think there are monks who spend years trying to find that kind of enlightenment! (laughs)

Kate: (laughs) Completely! Even in that college period, or high school … we were both diagnosed around 17 … we were so much more private about our health issues.

I didn't want anyone to see me as weak; I didn't tell anyone. And I would cancel stuff all the time. So you get that kind of emotional thing that you're flaking all the time, and that builds up anxiety. Obviously Emily and I were very transparent with each other, and our family, and we had a great support system with that. But it becomes very isolating when you don't tell everyone, and you're not open about it.

Em: It feels very double life-ish when you don't kind of accept it … ‘Okay, this is what's going on with me; I'm just going to own it and not care.' And in the beginning, there was so much more secrecy — not because we were ashamed of it. I don't know why; it was, like, ‘Okay, this is our struggle, we'll deal with this and then we'll be okay out in the world.’ My really good friends knew; Kate's really good friends knew. But beyond that, it was never something that I would casually just talk about outside of that circle. So it was very double life-ish. Only very recently, we were, like, “Okay, let's share our knowledge and what we've learned.”

Lauren: It’s interesting because I do find that in this chronic illness, invisible illness community, there is that stigma - that shame that's attached to finding out that you have these illnesses. Which, of course, is alleviated somewhat when you have a name for them.  But people do tend to, at least in the first few years as they're adjusting to it, have a period of time in which they are sort of living that double life and not necessarily telling teachers or other people.

Em: I think it's still hard for people to understand, and if something is chronic … a lot of the time you tell someone, “Oh, I can't do this right now.” And then if there's plans six months later, and I still can't do it for whatever reason, it’s often, “Oh, you're still going through that?”

Kate: And the fact that it's invisible illness, I think, kind of creates this whole other aspect that … we look normal … you wouldn't suspect.

Em: Or, you could do this yesterday, so why can’t you do it today?

Kate: Yeah, it took a while, even for people really close to us, to understand exactly how it fluctuates, that maybe in the morning I’m able to do something but in the afternoon, I can’t. Or the next day might be completely different. So it's a hard thing to fully understand the complexity and all the layers of everything that we have.

Em: We still have to work at really being clear with communications, and if we're getting frustrated with, maybe someone we're dating … I used to kind of clam up if they didn't respond perfectly to it and think, ‘Oh my gosh, they just won't understand. They'll never get it.’ And Kate's been really good at being, like, “Okay, no, just sit them down and talk to them and explain. Or show them an article.” Because a lot of the time, they just don't know, or they don't get it. And they haven’t been close to someone who’s had something similar to this. It has definitely pushed our communication skills by having to be very vocal, to express that yes, I could do this this morning, but often with POTS, you’re riding a good wave and then it gets really bad unexpectedly. I wish I knew why — [but] I don't.

Lauren: And it's interesting because as your communication style has developed, you've turned it into this platform that you created with the blog. And I'm wondering, because we're talking about how we balance our energies and all the communication that you're doing about being advocates, really, in this invisible illness space … how are you balancing the demands of work and life?

Em: Luckily, we’re doing this together and we both understand that we'll have set hours … Okay, we're going to work this morning from 9 to 1 and then break. Much of the time we're talking to each other and we’ll say, “Okay, I just I can’t; I have a migraine. I feel too sick.”

Kate: Or, “I couldn't sleep last night because of the pain.”

Em: It’s never an issue, because: “Okay, yeah, I get it. Feel better. Talk later.”

Kate: She's living it. I'm living it. So that's the nice thing about it, because she’s going to understand more than anyone.

Lauren: Have there been instances where you’ve had to also justify the illness to other people outside of your circle? People like employers?

Em: We have a handicap pass, because although we don't need it most times now, in the beginning, when we were trying to figure out POTS medication … Kate was in a wheelchair in Target. She looks completely healthy, but there would be times where we'd be sitting in car and she couldn't walk inside and we'd have to go home.

Kate: That especially … I’ve had people literally yell at me for using it the pass, calling me a fake. I'd be with my mom …

Em: And she’d have anxiety about using it.

People will literally get mad at you when they see two young, healthy-looking people [using a disabled parking pass], and they’ll call you out.

Lauren: I think the general understanding of the handicapped pass is that it’s either for someone who is in a wheelchair, or someone who is elderly. Not for someone who’s relatively young and “healthy looking”. It’s amazing because it feeds back into what you guys were saying about how this experience has changed your perspective on younger people.

Kate: Completely. And, you know, even through college and with professors … we went to the same university and just having some classes where we would be taking an elevator. That would be two flights of stairs or maybe three, which would seem like nothing for the average person, but it would get our heart rate skyrocketing and we’d have to sit down. So we've had people say, “Oh, you’re being lazy taking the elevator this morning.” It's an automatic response, sometimes, to see someone and make a judgment. But it really holds us accountable.

We don't know what anyone's really going through, because we're going through so much stuff people don't really realize.

Lauren: You’ve never, like, clapped back at someone and said, “You don’t know?!”

Em: I’m not confrontational at all! I’m just the least confrontational person. Kate’s a lot tougher than me.

Kate: And with the handicapped issue, it always kind of takes me aback … and I don't say anything. I've been with my mom and she will be on full mama bear mode.

Em: But you’ll spring into action.

Kate: If it’s something you can explain to someone … oh, this is what we can teach them … I’m all about that. I took a train and I was in the disability section so I didn't have to climb the stairs and take my suitcase off. And I got so many comments … “Oh, this is for elderly,” or, “This is for disability.” And I said, “Oh, I do have a disability. I wear a medical bracelet; I can explain what I have.” And if it's something like that, that's great.

But if someone is yelling at you and calling you a fake, it’s hard to to get through to people like that sometimes. It's frustrating, but it's just kind of the reality.

Lauren: Their mind’s made up already.

Em: Completely. I remember the first time I was getting better from months and months of not being able to really leave my bed, and it was a huge deal to go out to get coffee or to go to the grocery store. Those were my outings. But it'd be very difficult at that time. And I remember standing in line and not even really being able to talk to the cashier. I was so nauseous, I was just trying to get through that. And I remember thinking, ‘Oh my gosh, I must seem so stuck up. And so kind of just over it and rude.’

And I made a mental note to try not to judge people … because I seem fine, but he must think I'm just the most obnoxious person. But on the inside, it felt like, ‘Oh my gosh, I'm dying. I just want to get out of here.’

Lauren: I also wonder … and I bring this up a lot in my interviews … if you think there's a gender divide there too, in terms of reaction to judgment? I wonder if that idea of confrontation might be different if you were male; if socially you were viewed a different way. Do you think that you would be more quick to tell people to back off, to take that feeling of judgment and turn it into a teaching moment? Do you think it would be different if you guys were dudes?

Em: Probably.

Kate: Probably. I'll be out with my boyfriend, and he will be, like, “Just wait … if someone says anything …” It's just a different personality. I'm not one to go out at someone like that verbally.

But I think it probably is gender-related, that we have this more apologetic … “Okay, this is the situation …”  We're kind of making up for something we feel may be a burden.

Lauren: That’s also something, we're socialized as women … we’re always taught to sublimate pain. With our periods and things. So sublimating pain and discomfort, but then also putting other people's comfort first.

Kate: I would always - if my close friends around me knew through my mannerisms that I was not feeling well - I would always follow it with: “Oh, but I'm fine. Don't worry about me.”  Because if they were fine and no one was worrying about me, then it would be, like, ‘Okay, I can deal with not feeling well.’

I didn't want anyone else around me worrying. Don't cancel plans. I hated anyone changing their plans around me. So, yeah, it's definitely something we worry about, affecting the people around us, because we don't want to seem like a burden or anything. But the reality is, if it was one of our friends going through it, we would not think twice about that.

We would be, like, “Don't be ridiculous!”

Lauren: Speaking of your relationships — especially in the beginning, when you guys were first dealing with your symptoms and trying to track what was going on, and even taking the responsibility of your healing onto yourselves — how did that affect your relationships? Did you lose friendships?

Em: Yeah, so in the beginning, I think probably we both weren’t as good about communicating. So, initially, if someone didn't react exactly as I wanted, I would be, like, ‘Okay, they just don't get it.’ Or if they didn't reach out. I would explain, “Okay, this is the picture. I'm not being flaky. I'm not being anti-social. Just, this is my life right now.” I think with time I’m much better about being a little more transparent. But at the time when I was first diagnosed, I had a boyfriend and as soon as I found out what was going on, I instantly tried to just end it, saying, “Okay, this is way too much baggage. I can't deal with anything else besides my own health." And even though I didn't necessarily want to end the relationship; it wasn't anything he was doing. I just kind of buckled down and couldn't deal with anything outside.

I felt so overwhelmed with health, that I had nothing to give the other person in terms of attention or worry about them. Because I was so focused on myself. It's so much of a learning curve, because now, it's so great to have outlets and have people who can help with the burden — rather than seeing it as a negative thing you're bringing on someone.

Kate: With relationships, we kind of react a little bit differently. We’ve  been lucky that we do have a good base of friends. But there's definitely been more of those superficial relationships that, when we have to cancel things, they’re, like, “Oh, you're just flaking.” They don’t want to take the time. And we don't need that in our lives.

When you're younger, you think you need all these friends and then you realize it's more the quality of the people that you surround yourself with. It's not us being flaky, and it's not our fault.

Em: I would say … if you have something chronic, if you're dealing with that, even though it's painful and kind of a weird, awkward struggle to cleanse yourself of these relationships, it’s better in the long run because stress affects you so much. Stress affects our health, it makes our conditions worse. So, having stress from people who don't understand or who are going to make you feel added guilt … we put guilt on ourselves if we can't do anything. We don't take it lightly. I used to not make plans for years, because I hated being seen as that flaky one. I would get so anxious if I had set plans because I didn't know how I'd feel that day. I was fine making plans the day of, but I’d have to cancel such a large amount of the time. I didn't want to buy concert tickets; I didn't want to plan anything because I thought it would be money down the drain, most likely.

Kate: Those friends that we’ve lost, it's a kind of growing phase. Like what happens from your teens to your middle 20s ... it happens anyway. This has been a little bit more black-and-white for these reasons.

Em: But now we're left with people who are family, who are so close to us, that can lay with us in bed if we don't feel good and just watch a movie with us. That’s worth more than all the superficial friends in the world.

Lauren: And do you think that's also accelerated your maturing process, too?

Em: Probably. When I was younger, I remember feeling like I was 80!

Kate: It does, and it sounds cliché, but you appreciate the normal days when it’s a little calmer.

Em: You feel: this is amazing!

Kate: Yeah, you really do appreciate all the smaller things. We see people who are maybe more materialistic about certain things and superficial with other things. But for us, everything's about health. When you have that forefront in your mind, it really does, I think, mature you quicker.

Em: Because we definitely don't take health for granted.

Kate: Our outlook has changed. And that’s a good thing.

Lauren: I was wondering, as well, because you mentioned before we started the interview that you've got a brother. In terms of your siblings and your family, are they affected by any of these illnesses as well? Or have you guys been the lucky ones? (laughs)

Em: We definitely got it from our mom's side of the family. They didn't even know this until last summer, when we actually managed to go to Belgium and meet some family from our mom’s side.

Kate: We met second cousins who have lupus.

Em: They all have autoimmune things.

Kate: That was amazing!

Em: It was, it was cool. It’s unfortunate that they have that …

Kate: But it was a great connection.

Em: So definitely, with our mom having gone through much milder versions …

Kate: She sees it now. But our brother doesn't have any of this stuff. It's just been affecting us. Which, I mean ... affects women in the majority anyway, so there's that. But our dad and our brother haven't had anything, and our mom, like Emily had said, does have a milder case of the lupus and the POTS … and a little EDS in there, too. But it's definitely been a genetic thing that we've seen through her side, and those generations. Even our grandmother, her mother, she kind of recognizes: oh, maybe she did have POTS. Just the things that she's been doing to help herself with easier living kind of mirrors stuff that we've done for POTS as well.

Em: She used to kind of wonder: why am I so sensitive, why am I so much more sensitive than all of my friends to what I eat, or doing this, or needing more downtime?

That's very difficult, going through your whole life and not being taken seriously by doctors or getting a diagnosis.

Lauren: But because of you, she's had the opportunity to do that, too.

Em: To get the diagnosis?

Lauren: Yeah, and alongside you.

Kate: Completely.

Luckily, we were diagnosed relatively early, pretty quickly — considering it takes, I think, up to five years on average for POTS.

Em: And interestingly, it’s a lot quicker for guys to get diagnosed.

Kate: So I think there is definitely something there, that women take the pain or take that burden differently.

Lauren: But I think that also makes you guys pioneers in what you're doing. And I wanted to ask you, what was the inspiration behind creating your blog and starting to talk more publicly about everything you guys were going through?

Em: I remember the night actually … we were laying in Kate’s bed.

We can't work a nine-to-five because every day is so unpredictable. It's frustrating, because we like being productive. We like feeling like we're doing something, but this is the hand we’re dealt.

Kate: With our limitations.

Em: Yes. We've been through so much, in terms of trying different things, figuring out what works. We’ve been really lucky and fortunate to have access to different hospitals.

Kate: Emily’s gone to Johns Hopkins, and I've gone to the Mayo Clinic.

Em: It’s been years and years.

Kate: It's been so long. And I remember discussing different procedures; different treatments.

Em: And we just kind of made that snap decision.

We both have interests that factor differently into the blog. I like writing; Kate loves photography and editing.

Kate: And graphic design. It just kind of worked in together.

Em: And we’re super, super close. It just felt extremely right to do it together.

Kate: We said, why haven't we done this sooner? It just seemed so obvious when we were talking about it. Like, this is perfect, we should do this.

Em: A lot of people assume, oh, you're such advocates of this … you’re so open. I can't stress how much this wasn't the case before we started this. Even our good friends don't even know what we're going through on a day-to-day basis, because you put your best foot forward. When you leave, you try to be, like, “Oh, I'm fine. I feel great.” You just carry on.

Kate: This has been an amazing outlet also to reach different people in this community, and be open and really transparent. Like, this is how we're feeling today. But it's fine; it just is what it is. It's hard, you don't want to be complaining. This is how it is … it may or may not get worse tomorrow …

Em: It’s a fine line to explain what's happening — but not to complain.

Kate: So for this community to basically state how it is that day, or what we're doing … and it's complete acceptance and understanding. And it's been so nice to be learning from other people.

Em: We’ve been able to meet some really cool people and companies. We both, before we started this, truly had a passion for health and wellness; and when I got diagnosed and after that, every new kind of treatment I'd be on I would just be researching tons. A weird hobby of mine is researching products and supplements.

Kate: She’s always calling me about health stuff!

Em: Yeah, I'm always pushing things on Kate: “Here, try this!” I love that aspect of things; I'll talk with my friends all the time … "What probiotic? This is the new supplement we’re using." So, it just was a really natural transition to kind of do that now for work.

Lauren: Well, as you say, meeting more people — community — and we're sort of coming out of the woodwork. It sounds like the reaction to your blog has been really great, because you guys have been growing really beautifully.

Em: It's been very lovely to see. And we've gotten such warm reactions and such thoughtful comments from complete strangers who are interested in similar things and who thank us for being transparent — because it makes it a little more normal-seeming. So yeah, that means everything to us, because luckily, we have each other. But we don't really know anyone in our day-to-day life who's going through similar things. If we didn’t have each other, I'm sure I would feel crazy a lot of the time.

Kate: Yeah, it’s so nice, as you were saying, if we’re talking about foods, or having a flare-up, or whatever it may be, people will tell us, "Oh, I do that all the time.” Or, “I have to put my feet up in a store; I have to sit.” It can feel really strange until you get used to it ... to have people staring.

Em: You kind of develop a thick skin and care way less what people think.

Kate: It's nice to have an audience, where people are telling us, “Oh, I do that all the time.”

Em: People are so helpful in sharing what has worked for them. “Oh, this is similar to what I've done.” Or, “Have you heard of this?”

Kate: It’s been great.

It's just a great community to have. Everyone is so positive.

Em: We haven't had any mean comments.

Kate: And everyone wants to better themselves obviously in this, in looking for great things that help. And that openness and open-mindedness, and accepting community … it's been wonderful.

Em: And we don't ever want to push anything on other people. We say, “This is what we're trying. This is what's working for us. This is what's not working for us.”

Lauren: Keeping it real.

Em: It's just really comforting to hear people go, “Oh, yeah, I've been through that.” “Oh, yeah, I had a really hard time doing that, too.”

Lauren: That enhances your sense of community, really, doesn't it?

Em: Oh, completely.

And also, seeing what people go through is inspiring to us as well.

Kate: Everyone, to some extent, is going through something. And in this community, everyone is so individual, that's the thing.

Em: Yeah. And even if someone's not going through a chronic illness with their body, they could be going through something mental that's just horrible as well.

You don't know; everyone, at some point, is fighting a battle. If it's not right now, it's at a different time.

Lauren: So it's really increased your empathy.

Em: Yeah, I think we're both naturally pretty empathetic people. I’m always pretty much on the verge of tears. And Kate is the same way. Like if we start saying something nice to one another … or there’s a sad commercial … it’s pretty pathetic! Boyfriends have told us differently!

Lauren: Well, is there a reason that they're not boyfriends now?! Kick them to the curb! (laughs)

Em: (laughs) Basically we’ve been told that we cry more than anyone else that they know. I don't know, we're very much in the feels!

Kate: We feel all the feels!

Lauren: The fact that you have all these feelings emotionally … you’ve had to go through so much more than what your average person has to live through.

Em: I used to feel, ‘Oh, nothing affects me.' I was like an ice queen; I never cried. And I tell people that now, and they don't believe me. Because now, I mean … hearing people's Instagram makes me cry all the time. A video of a dog, or someone's story … I'm tearing up.

Lauren: But you know, on another level, it's also like being that much more connected to your emotions, and being unashamed of letting them out … surely that's allowed you to cope much more easily and to work through the challenges these illnesses have presented to you. They've sort of allowed you to plumb your depths in a lot of ways.

Em: A lot of nights, it’s been, “Oh, I'm so overwhelmed." I can't stop crying; it’s just horrendous. And then the next morning … “Okay, actually, I can deal with this now.” It's very therapeutic. You hit your breaking point, you cry … it’s never really lasted more than a night or day …

Lauren: And I think it's also enabled you guys to maintain that positivity in what you're doing with the blog, right? It's not just: ‘Here are all the reasons why I'm sad right now’ … but it’s: ‘Here are all the reasons that I have hope.’

Em: I think we both naturally like to feel proactive, and feel like we're doing something — even if it's very minor.

I think that's why I started getting super into researching products and supplements. Because my health feels so out of my hands in so many ways, what can I do to feel like, ‘Okay, I'm contributing what I can.’  It's empowering at the same time to feel like you're doing something.

Kate: And that's the difference between first getting diagnosed to where we are now. You're not really sure what to do in the beginning; it's so overwhelming. And there's not a direction sometimes, and even if you have a doctor that may not be the right direction or the right doctor. And we've gone through all that.

Em: The most soul-crushing part of our whole chronic illness journey has been, I think, for both of us is ...

… when you have a bad doctor; or you have someone who's not listening to you, not believing you; just not getting the correct information. I know people will relate to this. Even if you don't feel well, it’s, like … ‘I can deal with that’ if you have a good doctor on your side.

And luckily, we're at the point now where we have a great doctor who's worth everything to us.

Kate: Most of our doctors have been amazing, but ...

... having bad doctors has given us a voice to advocate for ourselves. We now know to speak up … “No, this isn't working.”

Em: A doctor wanted to give her heart surgery, for POTS!

Kate: Luckily, because this was in the beginning of my diagnosis, we didn't do it. And we went to the Mayo Clinic after, and found out that would have been the worst thing to do with POTS; I would have had to have a pacemaker and all this stuff.

Now, I feel like being so open about it has really given us a stronger voice to speak up for our own medical journey. And be the advocate for ourselves, which is so important. Looking back from when we were 17 to now … I just assumed everything the doctor said would be okay — because you don't know better.

Em: “The doctor knows best” — which is the case a lot of the time; we’re not saying that’s not the case. Unfortunately, through trial and error, we've been referred to different doctors. We’ve had a great rheumatologist and a great cardiologist, but being referred to an endocrinologist — that’s been horrible. So our base doctors are really good. But we've definitely been outsourced a couple of times to doctors who have been horrible, and we’ve been there, tears streaming down our face … just feeling so deflated, feeling so frustrated to the point of tears. That's been a very low point. But through that you realize you have to be your own advocate.

If you know something's wrong, then something's wrong.

Lauren: Because you've been to so many different practitioners and through many different therapies, have there been any therapies in particular for your various disorders that at this point you swear by? Are there are certain things that you would really recommend to other people who might be going through what you're going through?

Em: There’s definitely certain products or tricks that we've picked up along the way. One thing that I found so beneficial — that drives Kate crazy, and she’ll know what I'm going to say — is a peppermint oil. She’s very sensitive to smells, and every time we're in the car she’ll say, “Please don't with the peppermint oil, please don't with the oils."

Kate: But it helps her.

Em: It helps my stomach … or if I feel very anxious, like I can't breathe … or a headache or nausea. I swear by and push peppermint oil. I inhale it. I put it on my stomach, or I take it internally. It's been the biggest help for me with nausea.

If I leave the house, it increases my anxiety just because I don't like being far away from home or a safe space, and having little tools and weapons that make you feel like you can cope easier has been very beneficial. Having little tricks that make you feel like … okay, if I'm having a really bad attack, I have things in my corner.

Kate: I always carry electrolyte tablets with me; I'll carry salt with me and different medications if I'm having a really bad flare. So it's just having your own little toolbox that I don't leave the house without … she doesn't leave the house without.

Lauren: As people who have been through the healthcare system — in every way, shape and form, from holistic to medical — have you guys come across roadblocks? If it's not working in some ways for us, are there ways that you see that we need to change the system?

Em: Insurance has been the biggest headache.

Kate: It’s an ongoing battle.

Em: Every prescription that we get prescribed, it will be initially denied and they will need a pre-approval by the doctor.

Kate: The different tier levels.

Em: We've spent days on hold, trying to talk to the right person with insurance, trying to get a pill covered that we’re prescribed.

A lot of the time with insurance we feel like they're trying to get us to give up and say, “Okay, fine, we don't need it.” We don't really have that option though. So we just have to push, or dedicate time.

Kate: Sometimes it feels literally like a part-time job. I can only take certain manufacturers’ because I’m sensitive and I have a set of permutations, or sometimes we need a non-generic for medical reasons — and it's just a constant battle. So it’s frustrating and you feel kind of like you want to bang your head against the wall.

Em: If something's not covered and you need it, they make the prescription so expensive.

So you end up spending so much money out-of-pocket. And it's very unfortunate because you feel, ‘Okay, I'm going through all this health stuff. My battle shouldn't be trying to get the medicine I need. It should be dealing with healing.’ I mean, it's incredibly frustrating that we're put in a situation that we have to spend a lot of our energy fighting for the pills we need to get better.

But that's the reality of what happens, unfortunately.

Lauren: And the pre-existing conditions, I guess, now …

Kate: We’ve had this for so long, it's kind of comical-feeling at this point that that could even be a roadblock to give us health insurance.

Em: If there's ever an insurance system where you don't need to have a condition to get on the insurance, we're screwed. What are we going to do? We both have a ton of medical stuff.

Lauren: There's no kind of preventive care model ultimately, is there?

Em: No. I mean, this isn't something where we can eat really healthy and exercise, and we'll be fine.

Kate: It's hard, and when you do get those people on the phone that say, “Okay, try this loophole … do this …”

Em: Oh, those people! We praise them, with “Thank you for helping us!” Finding someone who's helpful or putting us in the right direction! You just feel like you want to bang your head against the wall … it can feel like a wild goose chase at times, just to try to get a prescription you need. We b*tch about that plenty to a lot of the people closest to us!

Lauren: I've been there. I’m one of those people as well … with my health insurance, I got so exhausted just making the phone calls I had to get my mom to help me.

Kate: Oh, we’ve done that.

Lauren: It’s a full-time job, absolutely! Now, we've covered a ton, and I usually wrap up the interviews with some Top Three Lists. But I wonder if there’s anything else that you guys wanted to talk about that we didn't cover … because we didn't go into detail about the other illnesses that you are living with, aside from the stuff that sort of overlaps. So if there's anything that you guys want to say about all of the other little details here and there, I'd love to hear anything that you’d like to share.

Em: Yes, we have all these multiple conditions, and sometimes we don't know what's coming from what.

You just feel bad, or you just feel in pain, or you’re sick to your stomach — and you don't really know what the culprit is. And that's frustrating.

Kate: That’s very true. I have gastro issues; I have chronic migraines I get Botox injections for. If you look at the symptoms for lupus and POTS, it's migraine, it’s fatigue, it's a stomach issue. Sometimes at appointments, I’m saying, “I don't know what's coming from what."

Em: We’re still trying to figure it out. My good friends say, "It doesn't matter where it's coming from. It will pass, don't worry.” But if something's wrong, I'm trying to figure out what caused this one and why I’m feeling like this. It's just a constant puzzle. You don't know, am I just about to get really stick with something, or am I just experiencing a symptom from this condition? Do I have the flu, or am I having a flare day? It’s a constant …

Lauren: … balancing act!

Kate: We always have to explain to people ... it's on little, specific levels.

Em: If you do one thing too much, you fall off the tightrope. You don't drink enough water, you’re off the tightrope. It's just a huge balancing act.

Lauren: And it's just as you say: those tiny adjustments. It’s good that you're also in that place where it is those tiny adjustments; it’s not like an overhaul that you have to do. But those tiny adjustments are almost harder.

Em: Yes, POTS is so finicky. I didn't have enough salt so now I can't get out of bed.

It's definitely not “carefree living”. You have to be very careful.

Kate: I have a checklist now. So if I’m dizzy …

Em: She has to ask, did I drink?  Kate’s so good about always chugging water with electrolytes, and I'm not great about that. So she's always pushing water on me.

Kate: We hold each other accountable.

Lauren: That’s so important: to have an accountability buddy. You guys not only have each other as that, but also as co-advocates and having the same doctors together.

Em: I don't think I would have the confidence to be so open about it if I didn't have her by my side.

Kate: I feel the same.

Em: We joke that we're each other's hype women. If I didn't have her to be like, “Yeah, you got it!”  It’s this confidence thing.

Having someone constantly in your corner that makes you feel, like, ‘Oh, I can share all this stuff. I can see what works for me' ... with some validity.

Lauren: And having someone who really, genuinely gets it.

Kate: That's one thing … no, I wouldn't wish this on someone.

Of course, it's a struggle and it's been difficult at times. But I feel so blessed in a weird way that she does have this and she goes through this with me. Yeah, and you know, she’s my hype girl!

Lauren: And it strengthens your bond obviously, as well. So in terms of these Top Three Lists, ladies, I’m wondering what your Top Three Tips would be for someone who suspects they might be entering this invisible chronic illness world?

Em: I would say the first thing, for sure, is to get a doctor that you trust emphatically, who you feel is your advocate, who’s going to push for you and listen to you. Just because, our lowest of times have been with frustrations if the doctors are not listening to us, or not hearing what we have to say or dismissing us in any way. Such a light in our journey has been our doctor; I have so much gratitude for this man who has helped us so much. So if you feel like you don't have a doctor who's listening to you, who's pushing every avenue, who's referring you  … and that's another thing, if it's not really his subject or his specialty, he'll refer us to another doctor.

So get a doctor who doesn't have an ego.

Who can say, “Okay, let me hear what you have to say. Let me hear your concerns. Let me talk to other doctors.”

Kate: And I think that goes with another tip, which I think Em would also say … in the beginning, if you’re feeling lost, chart your numbers down. That’s the number one thing we always do at appointments …”Okay, what's your numbers?” It's so hard, sometimes, to recall what it's been like over a month.

Em: Because it blurs together.

Kate: And you might get that appointment when you're having a good day. So you need to remember how it is during the bad slump. We have charted our blood pressure, our heart rate, our weight … if it fluctuates, and for how long. So if you have that kind of data, you can see what might be working.

Em: And doctors are scientists; they like to see the info.

Kate: Exactly. And that's been so helpful, even in the beginning when we were lost. It's just nice for you to see, ‘Okay, wow, I'm really dipping if I'm standing,' or, ‘I'm really having these episodes.’ Is my energy different in the afternoon? Sleep schedules … there's so many things that can be helpful for a doctor to see and track your progression … that's been a big thing for us.

Lauren: And for you, too. Sometimes I'm just not cognizant.

Em: You see patterns. So one is, find a great doctor. Two is, chart. I would say, three is: Surround yourself with people who are going to support you; who understand and don't make you feel guilty; who don't give you grief for canceling, or make you feel bad that you can't go to whatever event … because trust us, we would rather be at a party than in bed. If we're in bed, it's not by choice; we're not enjoying it. We would rather be celebrating or going to a birthday or doing whatever.

Lauren: That’s the chronic element of chronic illness.

Em: Completely. Get your circle of people who are going to help you in any way, who make you feel good and make you feel love, and who don't add stress to your life.

Kate: We’re so lucky that we do have that support system, but some people don't. And there are, as we've learned now, amazing support systems online. Like Facebook groups.

Em: Yeah, it doesn't even have to be “real life” people. Just get people who comfort you. So much of this …

Kate: … is not feeling alone or isolated.

Em: Going through health stuff is scary, and it's hard. Creating an environment that's comfy is so important … you know, your own space, your room, a place where you feel at ease. So many of these aspects change day-to-day, and multiple times during the day, and even though it happens so frequently, I will still get panicked if I'm having a really bad flare and I’m out. Or even if I'm home and I have a really bad attack; it will still panic me, even though it's happened so many times. So just creating an environment that's comforting and calm and as stress-free as possible, I would say, is so important.

Kate: I agree completely.

Lauren: You guys have obviously had to overhaul your lifestyles, right? Do you ever cheat on those lifestyle changes?

Em: Constantly!

Lauren: What would be your guilty pleasures, or comfort activities, when you’re having a flare-up? What are your top three?

Kate: I think for the cheating stuff, I would say probably food for me for sure.

Em: For sure! It’s so strict and there are so many foods you can’t eat that your sanity … you can't lose it.

Kate: We’re going to have chocolate! And if I have a flush or I’m going to have a flare, I know why.

Em: You have to live your life. So we try to follow it, you know, 90% of the time. Because any time we've tried to do something 100% of the time, it’s just not going to last.

Kate: It doesn’t last, and it's exhausting.

Em: Yeah, you feel like you can't go out, or participate.

I think you can do something 90% of the time and still see great results.

So, I think food is definitely something that we deviate from. We try to stay generally really low-sugar, but if we're out …

Kate: And we try to be gluten-free; it's not for celiac reasons, it's for autoimmune reasons. But if everyone’s eating pizza when we’re out for dinner, we’re not going to make the whole group order gluten-free.

Em: We try to live our life, and then when we're home we try to be much more strict. So, food. What else, Kate?

Kate:  I think probably exercise. We try to stay on routine but there are days when …

Em: … we just can’t.

Kate: Yeah, we just can't stay on that schedule. And it's important for POTS, and it has helped us, but we do definitely cheat on that.

Lauren: It’s hard. It's hard, no matter who you are, to have consistency. You get bored with your food, and with your exercise, and you do need to live your life.

Em: You’re not going to stay motivated. Or we're not. We're not going to stay motivated if we're doing it every day, all day long. We're going to burn out. If people can do that, kudos to you. I love caffeine. I drink coffee and it's not great for POTS. Sometimes, it kind of helps if you're having a migraine or headache — but it flushes out your fluids and we're constantly trying to hold on to fluids. So it's not great. But I love coffee so much. You’ve got to protect your sanity. And we kind of have a mindset.

You can make anything work; it might have to be a little different than how you envisioned it. But you can. You shouldn't have to lose anything you love in life so much. So maybe we'll be stricter in something, and then indulge in something else.

Kate: There are modifications. I'd been off coffee for a couple of years, and now I'm back on it a little bit. So it's just trying to find that balance. Sometimes I'm better without it; sometimes I'm okay with it.

Lauren: Thank you so much for being on the show.

Em and Kate: Thank you.

Lauren: I look forward to continuing to follow your journey. And if anyone wants to find you online, where can they find you?

Kate: @TwoBeingHealthy is our handle on Instagram, and at TwoBeingHealthy.com is our blog.

Em: T-W-O, like 2.

Lauren: Well, Em and Kate, thanks again. And I hope you guys will start following along with them, and check out their blog.

Em and Kate: Thank you so much!