Sarah Belclaire is an art librarian, fine art photographer, writer, and researcher based in Boston. Believe it or not, she and Lauren connected over email when Uninvisible first launched…because, like our first guest Mercedes Yvette, Sarah had lupus! Let’s explain the use of past tense here…Sarah lived with drug-induced lupus for two years – a reaction to medication she was prescribed for a GI issue (and one that was later diagnosed as only a food sensitivity – and cured with diet change). While her lupus has since passed, she lives daily with the long-term side effects of its presence: in the form of dilated cardiomyopathy. In addition, she has a tendency toward chronic migraines bought on by the long-term use of oral birth control. Sarah has had to make a number of adjustments in her daily life as she lives with heart disease, and her avenue to advocacy has been to document her healing from surgery to implant an internal defibrillator. Through photographs in a series called Unmending, Sarah beautifully illustrates the light and shadow of invisible illness – and inspires us all to remember that the only way out is through.
Key links mentioned in this episode:
Unmending: Sarah’s photography series about her invisible illness
Lindsay Davis, ICD Advocate and Activist
Join us as Sarah shares…
- that she first got sick about a decade ago, when she was on medication for a GI issue that caused drug-induced lupus
- that drug-induced lupus was so much more damaging to her health than the original GI issue
- her surprise (and Lauren’s!) that a medication with such wide-reaching and devastating side effects was a) still prescribed, and b) not monitored closely enough to prevent the worsening of side effects
- how the side effects of the drug manifested: fluid in her lungs, swelling, protein urea (which affected her kidneys), an enlarged heart, and irregular heartbeat (dilated cardiomyopathy); but luckily – NO nervous system damage
- that her GI issues were ultimately related to food sensitivity, and were solved with a total diet change – no medications required
- that she also suffers from chronic migraines – which are related to her long-term use of oral birth control
- that her recovery from drug-induced lupus took 2 years
- that she suspects her cardiomyopathy was caused by her drug-induced lupus, even if doctors haven’t yet confirmed this hypothesis
- that she sought legal counsel when she was diagnosed with cardiomyopathy, but was questioned as to why she waited so long to report the issue (hint: she was healing and being diagnosed!)
- that she ultimately didn’t pursue legal action against the drug company or against her doctors for malpractice, because it would have been very stressful for her to continually relive the trauma of her illness
- how she manages her conditions in the workplace
- that she has to exercise to keep her heart healthy, but she also can’t overdo it – it’s a delicate balance because of her heart issue
- that there is a possibility she may need a heart transplant in the future; her emotional reaction strategy is to live in the moment as much as she can
- that she has had an internal defibrillator implanted
- that she has documented her surgical scarring (as a tool for recovery) in a fine art photography series called Unmending; this experience helped her normalize the healing process because it allowed her not only to express herself, but to return to a comfortable (and comforting) working medium
- that she’s been fortunate to find a wonderful medical team at Mass General Hospital
- that there is not a culture of compassion in the workplace, but she’s been fortunate to have support for her conditions at work
- which advocates in the invisible illness world inspire her
- the need for greater community-building – and access to these communities – in the invisible illness world
- how she stays active and motivated to exercise
This episode is sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: All right guys, thanks so much for joining me today. I’m here with Sarah Belclaire. She’s a fine art photographer and an art librarian. And she’s got a couple of things that have been going on, past and present. So Sarah, why don’t you start by walking us through your invisible illnesses.
Sarah: Sure. It feels like a really long story to me, because this is about 10 years ago that I first got sick. When I was in college, I came down with a flu-like illness. At the time I was on a medication for a completely unrelated GI upset.
Lauren: So you were already having digestive problems?
Sarah: And the medication was not only not really helping the digestive problems, but I came to find out that it was also giving me an allergic reaction — which manifested itself in what they call drug-induced lupus.
Lauren: When you mentioned this to me, I was, like, ‘Excuse me?!’
Sarah: It’s obviously something that I had never heard of before it happened to me, and I’ve actually never met anyone else who has had it — although it’s not that uncommon.
And the medication that I was on is actually known to cause drug-induced lupus.
So it is all the symptoms of lupus, related to that medication. So when you stop taking the medication, the symptoms start to go away.
Lauren: It’s just so weird to me that doctors would give people a medicine that causes something that is potentially even worse than what you were going through.
Sarah: It was so much worse. I guess for some people, it works; it does what it’s supposed to do. But it’s something that really needs to be monitored. And I probably wasn’t monitored as closely as I should have been. So this affected every system in my body, except for my nervous system. I was very fortunate that I did not have any damage to my nervous system. But I had fluid buildup around my heart and my lungs. I couldn’t breathe. My face got all fat and purple. It was like a full-blown allergic reaction.
Lauren: And did the doctors warn you about the side-effects?
Sarah: I was 18, so my mom was still my intermediary for medical stuff. And I think they might have mentioned it to her, but I’m not sure. I sure wasn’t aware of it.
Lauren: Yeah, well, it’s kind of like birth control; it’s the same thing. Yeah … they sort of tell you about it. But we sometimes take for granted what the side-effects are going to be, because we think, ‘Oh, it’s like one in 50 people. It’s not going to be me.’
Sarah: That is so true. Yeah. It was me.
Lauren: But did it actually help what you were taking it for, though?
Sarah: Not really. I had taken a couple of different things before that to try and alleviate the GI issues, and nothing had really worked.
I’m fast forwarding a little bit here … but it wasn’t until after I recovered from drug-induced lupus that it was really just a diet change that I needed. And that’s what got rid of the GI problems for me.
You know, people are sensitive to different foods and you need to learn what works for you. And that’s really all it was.
Lauren: Wow. Well, and also because if you have food sensitivities and you change what you’re eating, that can help to clear your gut if you’re building up. That certainly helped with me immensely, changing my diet. So … interesting. You got drug-induced lupus instead. Hooray! (laughs)
Sarah: I know, right?! Anyway, the second part of that story is, that in 2015, I was at my neurologist for an appointment to do with my migraines — a completely separate illness.
Lauren: You have chronic migraines, too?
Sarah: I do.
Lauren: Oh, fun!
Sarah: Related to birth control actually!
Lauren: Oh, even funner!
Sarah: I know! I have a lot of problems. (laughs)
Lauren: The thing is, you say that …and we can have a laugh about it … but the number of people who are living with chronic migraines, and with issues around birth control … that we’re not addressing because we don’t really notice the symptoms, because they seem manageable … like a migraine, sometimes you can take a medication for it. But there are drugs that are causing these problems, and we’re not aware of them before we take the drugs. I’m interested to hear how this has all manifested for you.
Sarah: It’s funny, the migraines weren’t something that developed until later. People can not have chronic migraines until later in life.
Lauren: Because your hormones change.
Lauren: So you’ve recovered from the drug-induced lupus?
Sarah: Yes, I was considered in remission at that point.
Lauren: And how long did that recovery take?
Sarah: Probably a couple of years. It was my kidneys that kind of lingered. I had proteinuria, which is a big problem for a lot of people who have kidney damage from lupus. That was kind of the last thing that resolved itself, and I have not had any lupus symptoms since then.
Lauren: So now we’re on to the migraine situation …
Sarah: Yes, I was at my neurologist, he was taking my pulse and he said, “Your pulse is 40-something, that’s really low. Do you feel faint?” And I said, “No.” So he said, “You need to see your primary care and have them check out your heart.” So I went to my primary care. They also noticed my pulse was really low. And after I had an echocardiogram, what they found out was that I had an enlarged heart and an irregular heartbeat. So I was having lots of double beats, triple beats, cool rhythms going on in there, that were causing them to not be able to actually feel every beat — because some of the beats were really strong and some were really light, and they just couldn’t feel them so it made it seem like my pulse was really low. But it actually wasn’t. So my primary care was very concerned when she felt my very low pulse, but I wasn’t on the floor so she knew it was something unusual.
Lauren: Did it mean that your heart was actually beating faster because of these irregular beats? What did it actually mean, and what did they diagnose you with?
Sarah: Well, I’ll tell you! It beats irregularly, so sometimes it beats really fast all in a row, and sometimes it beats normally.
Lauren: Okay so it doesn’t slow down…it just goes fast or normal.
So I ended up going to a cardiologist, who said that I had cardiomyopathy. Which is what I struggle with now. It’s dilated cardiomyopathy, which means that my heart muscle is enlarged.
Lauren: And this is likely because of the lupus?
Sarah: That is something that I don’t think any cardiologist really has definitively told me. But we did find X-rays of my stomach from when I was in the hospital with lupus, and part of my heart can be seen in that X-ray. So when I had a GI-related X-ray before I was in the hospital, my heart looked normal. And when I was in the hospital and they took another GI X-ray, there was scarring on the heart.
Lauren: Okay, so clearly this is because of the drugs that were administered to you when you were taking care of your GI issues?
Sarah: It seems very clear to me.
Lauren: I mean, that’s evidence right there. So how do you proceed with something like this? Was it beyond the statute of limitations for some kind of medical malpractice suit? Did you decide, I’ve got to sue the drug company or the doctors … or what did you do?
Sarah: It’s funny, I had thought about that when I first was ill, because I felt like I had not been monitored enough. But I had recovered from the illness. I felt like the doctor was trying to do their job.
And I decided not to proceed with anything legally. But when I found out that I had this heart condition that was going to affect my life, way more than my one lupus flare did …
Lauren: Well, the one lupus flare that lasted a couple of years!
Sarah: Well, this has lasted longer than that. So that goes to show you how much it’s impacted my life. But I did look into it.
I spoke to a couple of lawyers and I said, “You know, I don’t know who’s to blame for this, but I feel like there was negligence.” And they said, “Why didn’t you pursue this sooner?” And I said, “Because I was trying to recover from it!”
Lauren: And also, you didn’t know that you had a heart condition until a couple of years later; it took time to develop, even though there is a very clear link between the drugs and the condition.
Sarah: Exactly. But from a legal standpoint, it’s not really a case for them because I think the statute of limitations, at least for Massachusetts where I am, is, I think, three years since you find out that you have a condition as a result of the malpractice. So I was very close to that three years at that point, and I said, “You know what, never mind!”
Lauren: And I suppose also there’s an emotional element here, too, right?
Sarah: Oh, yeah!
Lauren: Because if you were to pursue a case, you would probably, for the next several years, be re-living a lot of the emotional trauma associated with it. Which would not have been very useful to your health either, and would have been very stressful, I’m sure.
Sarah: Oh, yeah. I was crying on the phone with the lawyer, just telling the story. And it was hard for my mom, too, because she was really the concerned parent through all of that. And she was having to relay her notes from my hospitalization — since I was not really with it at that time. And it was hard for her, too, so I didn’t want to put both of us through that.
Lauren: Well, I imagine you were a teenager/early 20s when this was happening?
Sarah: The initial bout of drug-induced lupus, I was 18. So that was 2008. And this recurrence … well, not recurrence …this was going on the whole time. I just didn’t know about it.
Lauren: But this was worse and more nefarious, if you will. So it was from 18 onwards, pretty much. And that’s also a time when most kids are robust and healthy — and all of a sudden, your mom is a caretaker. And, I’m sure, very concerned. So, on a certain level, I’m sure not pursuing legal action was probably less stressful for her as well, because you both would have been re-living a lot of that trauma, wouldn’t you.
Lauren: Wow. So you’ve got cardiomyopathy and migraines now from the sound of it. So what does a typical day, or week, look like? And how do the symptoms come up, and how do you manage them?
Sarah: It’s funny … for the most part, my migraines are under control because I stopped taking oral birth control. Which goes into your bloodstream more, is what I’m told by my gynecologist. It’s amazing what a difference that has made, switching off oral birth control.
Lauren: Do you mind if I ask, are you still on birth control?
Sarah: Yes, I have an IUD now. Which has been a lot better for me. It has other side effects, don’t get me wrong. And some of them pretty bad, like emotional side effects. But for the most part, I’m able to live my life every day, like I did before I had chronic migraines.
Lauren: Okay, and then what about everything with your heart?
… I don’t have a typical day. Sometimes it’s better, sometimes it’s worse.
When I have a day that I am doing a lot of physical activity … you know, I work in a library. With stacks, we have to climb up and down ladders to get things; we have to push equipment around. It can be really hard. I don’t get out of breath as much anymore because I’m on medications that help with that. But I get lightheaded when I stand up really quickly. I feel like I’m going to fall over. Things like that. I have to be very careful with how I exercise, and that can be a delicate balance because I have to exercise to keep my heart healthy, but I also get tired very easily, I get lightheaded. So it’s very difficult.
Lauren: Are exercise classes harder, and is it better when you do your own sort of structured workout?
Sarah: I do entirely my own. Because when I exercise with other people, I’m not able to keep up. It doesn’t work, which is a shame because that’s a really good way to motivate yourself. But I have to be self-motivated, which is difficult because exercising is really boring!
Lauren: I’m not the biggest fan myself! (laughs)
… But, you know, I’ve kind of learned to be self-motivated through all of this.
So that’s kind of the strategy I have to use.
Lauren: Now, this is sort of a morbid question. But do we know if the cardiomyopathy is something that can affect you longer term, in terms of your health or life expectancy?
Sarah: Oh, that’s a great question. Yeah, that’s been the hardest thing to come to terms with. I will have it for my entire life. And I’ve been told, by a doctor who was very, I guess, reality-driven, that it could get better, it could stay the same, or it could get worse. And I have been on medications now for four years, and it has not gotten better. So, it will either likely stay the same or get worse.
If it gets worse, some day in the future, I might need a heart transplant. That’s something, that when I think about it really hard, I just get really depressed. And so my strategy is to live in the moment. I don’t think that that will ever happen. Who knows? It might. But the reality is that a lot of other things could happen to my health. So it’s not really worth it to be upset about things that you’re predicting.
Lauren: Absolutely. And have you had to have any surgeries in and around your heart in all this time as well?
Sarah: Yes! I say that like I’m excited, but really I’m just excited to talk about it because it’s actually kind of interesting. I was told when I was diagnosed with cardiomyopathy that I might have to have a defibrillator.
Lauren: Oh my god, I’m making a ‘wow’ face because no one can see this but like, my eyes just like, popped out of my head. Like in your body?
Sarah: Yes, like an internal implanted defibrillator. That would literally just watch me and wait to see if my heart had any abnormal rhythms. And if it had so many that I passed out, it would shock me to wake me up.
Lauren: Oh, my God. And have you had this implanted?
Sarah: I have. It was pretty much left up to me at a certain point. My ejection fraction — which is an indication of how well my heart pumps — has been between 30 and 40%, which is not super low. So my cardiologist at Mass. General Hospital told me that I could have a defibrillator if I wanted to, but he strongly recommended it. And after kind of grappling with the fact that they were going to cut me open and I was going to have a giant scar, I said, “You know what, let’s just get this over with.”
Lauren: And it’s interesting, because this is something where you’re on the invisible illness spectrum — obviously, you have these symptoms you feel, and not necessarily everyone sees. But something like a huge scar on your chest is something that’s very visible, but not in an everyday setting, right? We don’t walk around with our shirts off!
Sarah: Well, some people do! (laughs)
Lauren: Yes, some people do. That’s nice for them! (laughs) But you’ve documented some of this in your photography, haven’t you?
Sarah: I have. When I decided to have the surgery, I kind of went into it with a ‘Let’s do this’ mentality. And I figured, I’m going to use this somehow.
I have a lot of mentors in the photography world who really encouraged me to explore this and use photography as a tool for recovery. And so that’s what I decided to do. The day that I had my surgery, I was taking selfies. And then the day that I came home from my surgery, which was literally 24 hours after, I was taking portraits. And people were saying to me, “Aren’t you in pain? That’s amazing that you would put yourself through that.” But really, it made me feel good. It was like getting back to reality and doing something that’s normal for me. And so I decided that I was going to photograph through the whole healing process, which was a long process.
Lauren: How long was it?
Sarah: I had some complications, and I still have some complications from the surgery. So I would say it’s ongoing. The device is fairly new in terms of technology. I don’t have the typical defibrillator that sits over your heart. I have one that’s implanted in my side right under my armpit. And it has leads that go up my chest, and the lead has been kind of moving around. For most people, once it heals it stays put, but for me, it has been kind of popping in and out of place. And when it does, I have nerve pain.
Lauren: Oh God, and that can be really bad.
Sarah: It’s like, if a piece of paper touched me, it would feel like I was being stabbed. It’s very painful when it happens.
But fortunately, at Mass. General where I had my surgery done and [where] I’m still treated, they’re very good listeners. They take it really seriously every time it happens to me. And I have a doctor who will see me face-to-face any day that I need to be seen. So I’m very fortunate in that regard.
Lauren: Oh, that’s really, really great. Because often with these stories, you hear more the earlier part of your story where there’s someone not listening and not giving you all the information that you need. So it’s great to know that you’ve got an advocate in that way, or at least someone knowledgeable you can turn to, who’s available to you.
Lauren: Speaking of which, I wanted to go back to what you were talking about earlier with your mom. Because it sounds like she was your person through this whole experience. How has that impacted your relationship? Has it changed your relationship, deepened it in any particular way?
Sarah: Well, I’ve always been close with my mom.
But I think it made her … not see me differently, but I think she worries about me more now. In some ways, it’s made me even closer to her. And in some ways, it’s made me feel like, ‘Come on, mom, I just want to do this by myself.’ But no matter what, at the end of the day, she is my advocate.
And in some ways, I feel like I still need an advocate, and I’m so lucky to have her. She’s really smart. She takes a lot of notes. She’s really good at self-advocacy — making sure that you understand what your doctor is telling you, looking stuff up yourself to kind of fact check. So, without her, I would not have had that.
Lauren: I just want to highlight how important that is, because I think so many of us end up in this world, when we get hit with something, with some kind of illness. And we’re so used to being well, the minute we get something that makes our bodies not respond the way that they used to, if you will, it’s a real steep learning curve — to gather information, and to know where to look for information, and to be able to speak up for yourself. So the fact that you have someone on your team who is naturally doing that for you, it’s such a great lesson. And it’s so wonderful that you’ve had her the whole way through.
Sarah: I couldn’t agree more!
Lauren: It’s really exceptional. So you’re very lucky in that way. And I’m sure your mom thinks she’s very lucky to have you, too!
Sarah: God, I hope so!
Lauren: No, I’m quite sure! So you also talked a little bit about if you’re climbing the ladders at work in the stacks, and you get short of breath, and things like that. How do you balance the demands of work and life with cardiomyopathy? Because I imagine stress is also a big factor, so you’ve got to mitigate that, on the daily.
Sarah: Exactly. I’m very fortunate that I work in museums, which aren’t really a line of work where you’re expected to have to run around doing really exhausting things every day.
I am fortunate that I have worked for institutions that have been really open and able to discuss these things with me. But in actuality, I think that I am pretty good at knowing my own limits. It’s never impacted my ability to do my job. Because I plan ahead.
I’m aware of what the expectations are ahead of time. And I realized that I have to kind of put in that extra effort to make sure that I’m prepared. But if it means that I need to eat a granola bar in the middle of the day to make sure my blood pressure is good, so that I can go and do something … then I’m going to do it, so I can do my job.
Lauren: So you really are on top of your functioning. And it’s really about the planning, it sounds like. Which is what it means for so many of us, because I think a lot of us are used to that go! go! go! all the time. And we suddenly realize, ‘Oh, I have to make a dietary change,’ as you discovered. Or, I’ve got to make sure that I don’t end up with hypoglycemia. And being prepared all the time with snacks that you can actually digest, and eating at regular times as you’re saying. So being a lot more structured and prepared for that structure. But it makes all the difference, doesn’t it?
Sarah: It makes a huge difference.
And it’s funny … that’s kind of one of the things that I’ve tackled in my photography … I really think that there’s not a great culture of compassion in the work environment. If you say that you’re sick, your bosses will say, “Well, give me a doctor’s note to prove it.” I don’t really like that. I wish that more workplaces were as compassionate as ones in my experience have been, to enable you to feel like you can be prepared.
Lauren: And that you’re respected for who you are, and what you have to offer. And that your condition is not going to affect your commitment to the work.
Lauren: It sounds like you’ve been pretty open with your employers about the cardiomyopathy. Do you tell people when you’re going in for a job interview? When do you tell people, ‘ Hey, by the way, I have a heart condition and I have a defibrillator in my chest’?
Sarah: That is such a great question.
I don’t disclose it at job interviews, because it’s never impacted my ability to do my work. So I feel like there’s no point for them to know. The reason that I tell them once I actually sit down in my office on my first day, is because if my defibrillator went off, I want them to know what happened and to know what to do with me. That law’s in place for a reason — that you don’t have to disclose medical things. And I think the point is, if you feel that you can do your job, then you can do your job. You don’t need someone else saying, ‘Well, can she do her job?” Because you know you better than they know you.
Lauren: This is an interesting one, too, with everyone I’ve interviewed. We’re all committed to the work that we do. But there are the few people out there who do take advantage, who sort of give people who are actually dealing with illness a bad name. And that’s where I can understand why the laws are in place, and I can understand an employer’s trepidation, perhaps. But also to understand that at the end of the day, everyone’s just looking for commitment, and as long as you can demonstrate that you’re committed to what you’re doing. But when you disclose on that first day, as you’re saying, “Hey, by the way, this is what happens with the defibrillator when it goes off, if it does go off,” have your employers ever felt like that’s a huge responsibility that’s heaped upon them without their prior knowledge?
Sarah: I have never had that experience, but I will say that I know other people who have these defibrillators … and I think my experience is not the norm. I think that depending on what line of work you’re in … a lot of people I know are in the creative industries … someone might have …not a problem with it, but it does pose some concern when you don’t understand what one of your employees is going through, and you think it might be an impediment to either your job or their job.
Lauren: Or even just knowing what the procedure is, you know … because, what is it like? First of all, has your defibrillator gone off before?
Sarah: Oh, I need to find some wood to knock on! No, it never has!
Lauren: If it does, does it look a bit like epilepsy? How does it look?
Sarah: I think that it’s literally just one shock. So it’s a jolt, and then it’s done. It shouldn’t shock you again unless you have another irregular heartbeat. And I will say that my cardiologist has told me that usually you will have already passed out by the time it shocks you.
Lauren: Oh, I see. Okay, so it’s not like you’re standing there and all of a sudden you get hit by lightning.
Sarah: I sure hope not! I have considered what that would be like. I think … most people when you have those kinds of irregular heartbeats, you don’t get enough blood circulation and you pass out — and then it shocks you. I think that’s kind of what’s to be expected.
Lauren: Well, yeah, and your blood pressure would be dropping, so, yes, it all makes sense. In terms of also disclosing this to employers or friends or family, have you — or even doctors — have you ever been confronted about justifying the fact that you have something going on? Have you ever had people doubt you, or expect more than just your word?
Sarah: I don’t know. I feel like I have, but I don’t really know what’s going on in people’s heads when I tell them about it. At my last job was when I actually had the surgery. And like I said, I’m pretty close with my supervisors. And so they were pretty compassionate. But other people who I worked with, when I told them about it, I felt like they didn’t believe me!
Lauren: But was that all in your head? Was that your own emotional response?
Sarah: Maybe. I still feel that way sometimes. A couple of days ago, I was telling someone who I used to work with a story about, “Oh, I think that this is going to happen if I have to shovel the snow that’s outside. I’m going to just pass out.” And they were, like, “Ha, ha.” And I said, “But that a real concern. Do you think that’s a joke?”
Lauren: But that’s also where it’s your sense of humor naturally changes.
Sarah: Yeah, I know, I had to say, “Do you not believe me? Because I don’t think you take this as seriously as I do.”
Lauren: You know, from listening to the show, I tend to also ask: Do you think it’s because you’re a woman … that you’re doing that thing of second-guessing yourself? Or thinking that people are thinking less of you because of your heart?
Sarah: Heck, yes, I do. I have two jobs. I work in photography where I’m self-employed. And I work at a library where it’s mostly women, and so I feel like that’s kind of different. But for photography jobs, I don’t think some people can see the difference between being not physically strong, and being ill. I have been told before, “You’re not very strong.” And it’s like, ‘You know what, I’m not really. I kind of have arms like linguine. I’m strong enough to do my job. But some things I just don’t do because it’s a concern.’
I’m pretty open about my heart … and I think some people still see it as a weakness.
Lauren: And those people, are they men?
Sarah: Yeah, mostly.
Lauren: It’s interesting, the gender parity lines, I find, with the perception of one’s illness and the being ill itself. You know, the outreach involved. And there’s always that divide. And I think also, in terms of the concept of invisible illness … at least with regard to autoimmune diseases, it’s seven out of 10 people are women who have them. But with something like cardiomyopathy, you don’t have to be male or female to have that, I imagine. And same with migraines. But the people who are going to share about it may more likely be women, but they may also feel more discriminated against in certain situations. So it’s always very fascinating to see where one’s particular experience lies.
Sarah: No, absolutely.
Lauren: So, now, I mentioned that you have used your photography to channel some of your experience. So, to me, that’s a form of advocacy, particularly if you’re showing your photography. Can you talk to us a bit about the experience of being an advocate for someone in your position, and any other ways in which perhaps your experience has changed into an advocacy position?
Sarah: Sure. Advocate is what I strive to be. I don’t even see myself as one! I have a really good friend, Lindsay Davis; she is a really strong advocate for people who have these ICDs (implantable cardioverter-defibrillator), and she also has cardiomyopathy. And it was kind of our friendship which really motivated me to speak more openly about it.
So there are advocates who are inspiring me. And I figured if other people who have invisible illnesses are going to see my photos and think, ‘Well, that’s how I feel’ … then it’s worth it. And it has been difficult to be open. Because I don’t want people to inherently see this associated with my name and think, ‘Oh, she must be really weak. She can’t do her job.’
Lauren: That’s the thing, isn’t it … we don’t want to be defined by our “disability”. It’s just part of who we are. But there’s all these other things. And I can understand that completely.
Sarah: It’s funny though …
… since putting my images out there, I have had way more positive feedback than I’ve had negative feedback. So that kind of keeps me going.
Lauren: And I would say also, just from the photography of yours that I’ve seen, a lot of your work actually deals with light and shadow. And it deals with what can be seen and what can’t be seen. Whether it’s photos of your scars or not.
Sarah: Thank you for saying that! I’m glad my message is getting through!
Lauren: But it is very much about that because you’re photographing limbs behind fabric, and so we’re seeing shape and form — but not necessarily in its purest sense. I don’t know if that’s really the most appropriate choice of words … but the idea that you’re dealing with … really, truth in that way, you know … what’s the stuff that we hold closer to our chest, and what’s the stuff that we release to the wind?
Lauren: So it’s great that you’re working with other advocates and have close relationships with them. And I know that you were also inspired by Mercedes, who was on the show as well because of her experience with lupus.
Sarah: Yeah. I was actually watching re-runs of America’s Next Top Model when I was in the hospital. That was before I was even diagnosed. And then when I was diagnosed, she was really the first face that I put to that disease.
Lauren: And was it kind of a relief to have someone out there, to think, ‘Oh hey, I’m like that person!’
Sarah: Oh heck, yeah!
Still, to this day, knowing that there are other people, especially other women, who are working and doing really cool things, while having cardiomyopathy … that’s what makes me think, ‘Well, why can’t I do that?’ It’s really a kind of therapy.
Lauren: It’s so important to create community in that way. Obviously, you have your immediate support system, you’ve got your mom, I’m sure you’ve got friends and family who are also there for you, you’ve got your friend Lindsay as well. But to have something on a larger scale, where you’re seeing kind of a message from someone else — which gives you a certain sense of validation, doesn’t it? It really gives you a sense that your existence is true, and you’re not the only one. It’s about not being alone.
And to tell you the truth, I think I’ve made more friends in the past few years who have invisible illnesses than who don’t, because I think we just kind of understand each other on a different level.
Lauren: Totally. Even if it’s just energetically … like, “All right, I gotta go. I gotta leave the party now!” That’s so true. And it’s not in an exclusive way, in the sense that you would be forsaking your friends who are perfectly well, But it’s just that there is a level of understanding of how you’re able to exert yourself, what you’re able to contribute in social situations especially, where there’s a lot of hidden pressure to show up. Having those support systems, I think, is really wonderful. And it’s great to hear that you’ve not only looked outside yourself and your community, but you’ve also created a community yourself. That’s really important. And it’s hard to do. I think a lot of us struggle with the pride factor, too, because first of all, when you get hit with something, sometimes you get so blindsided, you don’t know where to look. And by the time you figure it out, it can be a brutal journey, can’t it?
Sarah: It really is. And the truth is, it’s not easy to find these communities either — which is why I’m so glad that things like this podcast exists. Because sometimes, I was literally sitting on Instagram scrolling through #cardiomyopathy to try and find other people who I could talk to about it.
We really need better community building in the chronic illness community.
Lauren: Well, hopefully there’ll be other people who listen to this episode of the podcast and will go, ‘Oh, someone who has the thing I have!’ And be able to see your work and your experience reflected in the work. It poises you to be part of the next wave of advocates, which is really wonderful.
Sarah: Oh, gosh, I hope so.
Lauren: And we’re going to link to Sarah’s work on the episode notes [above], so you guys will be able to check out her work and really delve into her experience through her photography. So how important do you think it is, speaking of community, Sarah, that we we keep talking about invisible illness? I know that there are many ways in which the system does and does not work for us, and you’ve experienced both. But is it a talking cure? Is it a community building cure? Is there a cure? How do you see the next steps for those of us in this very large community?
Sarah: I think it’s absolutely about being more open … #oversharing!
Lauren: That’s why I use that hashtag!
Sarah: I think it’s absolutely about being more open. Like I said, I think we need a culture of better compassion.
I think we need to understand that working yourself to the bone doesn’t make you a better employee. Being compassionate and understanding other people, and being able to build community makes you a better employee.
Sometimes it’s necessary to work yourself to exhaustion if you’re working towards a goal that’s really important to you. But in this workplace culture in general, I think needs to be more conversations about illness. I think people are scared to talk about it, because it’s one of those things that we’re almost not even allowed to talk about.
Lauren: Yeah, I think on a certain level, we’ve been conditioned socially that that there are certain subjects that are taboo, and there are certain subjects that are not. So there’s that, where it particularly applies to women … like, don’t show up at the office and tell everyone you’re on the rag. Although I am definitely that employee! (laughs). Or, there’s the concern that if you do reveal something, you will be held to a double standard, right?
Lauren: So it is about compassion. This is what it always comes down to. It’s so fascinating to me, opening up these conversations with so many different and interesting people with varied experiences on the spectrum of invisible illness … the bottom line for everyone is compassion. And to have come to that conclusion, when you’ve had a really rough go of it, is hopeful to me. That we’re the ones going, ‘Oh, wait, compassion!’ So I think in that sense, “well” people have a lot to learn from the rest of us, don’t they?
Sarah: Yes, they do.
Lauren: (laughs) It’s funny though, because you’re saying, “Yes, they do.” But there’s also an element of, ‘Oh, I hope they do’. We want everyone to like us and to be accepted for who we are. And we accept people being well, so why can’t we accept them having a rough go of it here and there? Everyone has rough patches. Now, as you know because you listen to the podcast, I like to wrap up my interviews … and this has been such a great one and I’m really looking forward to getting it out there, and hopefully connecting with some people out there who also have cardiomyopathy like you … I like to wrap up the episodes with a couple of Top Three Lists. And the first one is: your top three tips for someone who suspects they might have something off or are maybe potentially heading into invisible illness territory. What would your top three suggestions be for someone in that situation?
Sarah: Do some research.
I’m by training a librarian, so I always say: Go to your nearest academic library and use their scholarly databases.
Lauren: Because then what you’re looking at is reliable information.
I would say, don’t be discouraged if you try one doctor and you don’t agree with them. If you have the ability, try another doctor. And build stronger relationships with the people who love and care about you. Because it could be a long journey, and you’ll need those people.
Lauren: And you mentioned that you had changed your diet which took care of your GI concerns. And with exercise and those kinds of lifestyle changes that you’ve had to make and adjust around. Do you ever cheat on those changes, or have guilty pleasures or secret indulgences that you turn to? Either just to give yourself some jollies, or as a comfort activity when you’re having a flare-up?
Sarah: I’m big cheater! At my last cardiology appointment, I told my doctor that I do cardio once a week. And he said, “Do you think you can do twice a week?” And I said, “May-be?” I’ve been doing good. Since then I’ve done cardio twice a week. It’s hard for me to get myself to exercise.
Lauren: Especially in a place like Massachusetts, when it’s cold outside. Seasonally, I struggle more as well.
Sarah: Yeah, it’s miserable out right now. And doing exercise inside is even worse.
Lauren: What are your favorite exercises when you do exercise? Because I know you said that you don’t love it. But when you can make yourself do it, what do you like to do?
Sarah: I have an exercise bike. So I use that a lot. When I’m not using it, it folds up and hides away, which is really nice. I like yoga, although I don’t know if I really have the temperament for it.
Lauren: What do you mean by that, that you don’t like to meditate?
Sarah: No, I actually do like to meditate. But I have a hard time standing in the same pose for a really long time; I get kind of antsy.
Sarah: Yeah, I don’t know why, but it’s challenging for me. But I think it’s good to train your mind to be more quiet. So I try to do yoga when I can. And I also have a couple of exercise apps on my phone that are really good, because they’re good motivators. A little indication will come up every day: ‘Have you done your exercises?’ And that helps me to motivate myself.
Lauren: That’s really good. And that’s where technology can be really helpful, something like a smart watch or a Fitbit connected to an app to remind us about things like that, and give us good suggestions. Any other guilty pleasures?
Sarah: You know, I think I’m the one person with heart disease who’s allowed to have Guilty Pleasures — because I’m supposed to eat really salty stuff whenever my blood pressure is low. If it helps my blood pressure go up, I’m like, ‘I’m not guilty at all!’
Lauren: You just go straight for the chips?
Sarah: Yeah, totally!
Lauren: That’s actually great. And that doesn’t then affect your kidneys adversely?
Sarah: They haven’t complained so far. I don’t think it’s a lifestyle that I’m supposed to eat chips every day. But if it’s really hot out, and I need a pick-me-up because I’m going to go for a walk or something, I have something really salty. And then I bring a bottle of water with me, just to keep everything going.
Lauren: What’s your favorite salty snack?
Sarah: Chips! My doctor has a joke that every time I have low blood pressure, or really low blood pressure, I should eat a pickle!
Lauren: I love pickles! I was actually having this conversation with someone recently, where I said I love them and this person hated them. I was, like, “How can you hate pickles?” Whenever people get them with their sandwiches, I say, “I’ll take your pickle!”
Sarah: Oh yeah, I’m that person, too! Send me your pickles!
Lauren: Send Sarah your pickles, guys! If you start getting them in the mail, you’ll know why! I think there is actually a pickle mail service — ones that you can get in little bags with the dill water.
Sarah: Oh, that’s really weird!
Lauren: Well, Sarah, you have been such a delightful guest. I’m so glad we connected. We actually connected because Sarah reached out to me when the podcast launched. She wrote me a letter that was basically fan mail, and we looked at a relationship and talked about what was going on with her. And so I invited her to be on the show. So I encourage those of you who are listening who are diggin’ the podcast … reach out, say hi, you never know what will happen. And I’m so grateful that Sarah reached out, because it’s been such a fruitful connection for both of us. And I find your story to be so inspiring. And I really hope that everyone listening will really learn something today, and hopefully, it’ll help them find their community. So Sarah, thank you so much!
Sarah: Thank you so much, Lauren!
Lauren: It is my absolute pleasure. And perhaps we shall have you back one day!
Sarah: Oh, I would love to be back. This has been great.