How to Support Someone Who’s Sick

After she survived cancer, COVID, and heart failure, Jen Singer took all the things she learned about being a patient and married it to her expertise as a medical writer, creating a series of short, informative, and yet funny, guides for newly diagnosed patients and the people who love them. 

The Just Diagnosed Guides should be required reading for women over 40. Today, you’ll hear why I believe that, and learn a few things about supporting those friends and family members who need us to step up in the most helpful way possible. 

About:  Jen Singer is a ghostwriter and editor who has appeared in numerous media, including the CBS Evening News, the Wall Street Journal, and Good Housekeeping. Among the original mom bloggers, she is the author of five parenting books. She is also the author of THE JUST DIAGNOSED GUIDES, available on Amazon, for new patients and the people who love them.

To get any (or all) of Jen’s Just Diagnosed Guides, visit GrownAssWoman.guide/episode191 

And to connect with Jen on Instagram, follow her @jensingersaid

COCONU: Get 15% off with promo code: GROWNASS at grownasswoman.guide/coconu 

Transcript

Episode Title: Something We All Can Do Better

Guest: Jen Singer

Episode Link: https://grownasswoman.guide/episode191

Jackie: After she survived cancer, COVID, and heart failure, Jen Singer took all the things she learned about being a patient and married it to her expertise as a medical writer, creating a series of short, informative, and actually funny guides for newly diagnosed patients and the people who love them. The Just Diagnosed Guides should be required reading for women over 40 today, you'll hear why I believe that and learn a few things about supporting those friends and family members who need us all to step up, and the most helpful way possible. This is the Grown-Ass Woman's Guide. I'm your host, Jackie MacDougall. Jen Singer is a ghost writer and editor who has appeared all over the media, including the CBS evening news, the Wall Street Journal, and Good Housekeeping. Among the original mom bloggers, she is the author of five parenting books, as well as the topic of today's episode, the Just Diagnosed Guides. And in this episode, we'll be focusing on two of those guides, and the information you hear could be life-changing. Let's get started.  

Jackie: When I reached out to you, it was because I saw the guides that came out and the one that really resonated with me was how to support someone who's sick. And I thought that was so universal. Some of us have undergone our own stuff. I mean, we're going to get into your story. but I think it's universal we all have somebody we can think of right away who's sick. However, when I started to read one of your other guides, How to be Sick, I was a little blown away at how much we need to talk about that first. So can we change gears a little bit? 

Jen: Yeah. Talk about it all. 

Jackie: Oh my gosh, like blood work, terms and lingo, the questions to ask, the tips for finding doctors and taking medications and undergoing procedures, I've had a double mastectomy. I've had the hysterectomy. I've had the surgeries. I have a kid with chronic illness. Many of us have aging parents or in-laws. 

Jen: Yeah. 

Jackie: This guide, How to be Sick, is so much more than how to be sick. It is sort of like the cheat sheet to understanding the medical jargon and industry and so, congratulations on that, because it's a really really simple and yet hugely powerful tool for anybody to have. 

Jen: Well, thank you. Yeah. I just want to help people because I didn't know all this stuff when I was diagnosed with cancer when I was 40, and then learned it the hard way and I turned it into a career of medical writing for a while. I was writing the website for NYU Langone in New York City and a couple others, and so I learned all of this and I know that if we can understand some of what I call medical ease, it really makes your experience much more smooth. 

Jackie: Absolutely. To be in that position where whether you get a diagnosis or someone you love gets a diagnosis or even just Like, we want to test you for this or we want to test you for that. It just simplifies it all. You have that guide. I mean, I could imagine highlights all over it or it's, understanding the difference between CT scans and MRIs. Just start there. A lot of people are like, I don't know. 

Jen: Yeah, and they don't understand why you would have one over another, same thing with a PET scan, and I've had like 16 of those, so I can tell people what it's like from the inside of the machine, and I can tell it in a way that a medical, hospital or, other medical people are going to call things discomfort when they really mean, oh, crap, that hurts. I'll tell you, oh, crap, it hurts. 

Jackie: Right. 

Jen: And then what to do about it. 

Jackie: Yeah. And I think it's very much like a friend who is being honest and direct and candid and picks up all the guides, so let's go back and talk about your story a little bit. So. You were 40 when you were first diagnosed with cancer. 

Jen: And my kids were 8 and 10 at the time. I had stage 3, non Hodgkin's lymphoma. I had a tumor the size of a softball inside my left lung. And I went misdiagnosed for something like eight months because when you're 40 and you're tired, and you're a mom, it's because you're 40, and you're tired, and you're a mom, that you feel all these things. 

And it turns out it wasn't. I wasn't, as I thought, falling out of shape playing tennis every week. It was because there was a tumor that was growing, growing, growing, until it was this big. And I later asked my oncologist. what would happen if we hadn't diagnosed it when we did, and you said within two months, you would have had a heart attack, your lung would have collapsed or both. So that's how close I got. 

Jackie: Wow. And that's not uncommon when it comes to women on the younger side who are tired and we're completely blown off. How did you come to get the final diagnosis? 

Jen: We started housewide construction on the house. I mean, like everything, every freaking room, just about. And we started the bathroom that was like five feet from where I was sleeping. And I started to develop a cough and I was certain that it was. Construction dust. It must be construction dust. Even though I was already having problems breathing. We went on spring break to D.C. And I had to sleep every afternoon for three hours. That's not normal. 

Jackie: Hmm. 

Jen: But I couldn't get anyone to tell me otherwise. So I went to an urgent care kind of place and they took an x-ray and he told me it was pneumonia. Sent me home on pneumonia medication for two weeks and then I didn't get any better. And I went back and he, you know, arms up in the air. Not sure what to do with you. You should go see a pulmonologist. Like I had a pulmonologist. I was an otherwise healthy 40 year old. Where was I getting a pulmonologist? But I knew enough from what I had been through with endometriosis that you don't just call up a pulmonologist and panic because I finally read that x-ray and it basically said possible tumor. Get a CT scan in medical ease. I was able to translate that much. I didn't understand a lot, and I knew I needed a pulmonologist and I needed one fast. So I called a couple of them and I first wrote a script out so that I wouldn't sound crazy and panicked. Because most of them are going to be, two, three months out, six months out before they'd get you in and I would have been dead by then. I didn't know that, but I would have been dead if I had waited. So I wrote out a script and one of them took pity on me. And that script was very specific about, this is what the doctor said, this is what's happening, this is what the x-ray said. So that you have the keywords that get them to make a decision quickly. And that's what got me in the next day and that doctor sent me immediately to the hospital. He said, that's a tumor. Go to the hospital now. 

Jackie: Wow. And that alone, if we stopped this episode right now, and that women were told to write a script in order to talk to a doctor, to give them all the information, try as much as we can to remove the emotion from it. That alone is worth, like, I'm just, publish. I'm good with this episode, but we have more, we have more. 

Jen: Not just to get in to see doctors, but you should write a script for yourself whenever you're calling a doctor's office. Or now we go through the portal a lot. Make sure you edit it properly so that you're getting to the key points quickly. The people in doctor's offices have to talk to people all day long and people go off on tangents, do yourself a favor and make their jobs easier. And then you get in to be seen. 

Jackie: Right. Save the emotion for later, absolutely, so you get into this doctor and then it's just such a long road of treatment. Can you talk about that a little bit? 

Jen: Yeah, so I went to that hospital. That's where I was diagnosed. It was a local hospital. I wound up storming out of that hospital against medical advice because I was being told by some doctors that I knew that I needed a pet scan and that hospital didn't own a pet scan machine. And so I wanted to go get a second opinion, and if I left that hospital. about a quarter of a million dollars of chemo and other cancer treatments are going to walk out the door. So they tried to stop me, but I knew enough to go and I did get that pet skin. And that's when I found it was non-Hodgkin's. The hospital had said it was Hodgkin's, which is much more treatable. And so I kept going on and on. You're so lucky you have the good cancer, they kept saying. So then I assumed when I had non-Hodgkin's, I must have and I'm going to die. And that's not true either. 

Jackie: Right. And so you found a second opinion and then you went through your treatments with that particular hospital? 

Jen: I went into New York City. I live in New Jersey, so I went to New York City. And I had, the first two rounds were in the hospital. So it was five day long infusions. The first one that was supposed to be five days wound up 10 days or longer because of complications. Then it became, the last four rounds were outpatient, then there was still just a little bit of tumor left, so I had to go through five weeks of radiation. 

Jackie: Mm -mm. 

Jen: Then I achieved remission, and I haven't had lymphoma since. 

Jackie: Wow. That's amazing. And yet your journey was not over. 

Jen: It wasn't over. In 2020, I was one of the first people to get COVID, like February 2020. The OG COVID. There weren't even COVID tests. We didn't know what it was, and it just felt like a bad bronchitis to me. But that wound up landing me in the hospital because let's put it this way the cancer treatments, the radiation, the chemo filled the barn full of dynamite and COVID lit the match. I was more likely. to wind up with heart problems because of the cancer treatments and it could have been anything that pushed me over the edge and it happened to be COVID. So I wound up in a local hospital in April, it was like the beginning of April 2020, so I'm in the hospital in 2020 in New Jersey. One of the worst places to be at that time. It was just COVID everywhere and my heart was shutting down. I was having a complete heart block. So the electrical system of your heart has a way of talking to each other and it was shutting down like the stadium lights. After a game, just boom, boom, and if they didn't put in a pacemaker, I wouldn't have made it. So, at 53, I wound up with heart failure and a pacemaker. And I've since replaced that pacemaker with a defibrillator. 

Jackie: Wow. And so that's why you say your heart is battery operated. 

Jen: It's battery operated. Yeah, it's not fair to other people. You know, like, I'm bionic. 

Jackie: I think you proved that even before the pacemaker and the, And so, given your history as a writer, your whole career, you had been doing the medical writing, at what point throughout all of this, because even though you're a writer, many people could be like, no, I've had enough of sickness. I've had enough talking about this. 

Jen: Right. 

Jackie: But somehow you're like, I'm going to help other people. Where did that happen? 

Jen: Well, first of all, I left medical writing in 2018 because I was tired of being in hospitals. Haha jokes on you, Jen Singer. We'll pull you back in. So. 

Jackie: Hmm. Times ten.

Jen: It's the pandemic. I'm home with a new pacemaker. I googled heart failure and found something I had written. So thank you 2015 Jen, because I taught myself all about heart failure. 

Jackie: Okay, that's crazy. So you're doing the research on your own illness and you find something you wrote as a medical writer, years before. 

Jen: Yeah. Yeah. So, I mean, luckily I wound up with other things I've written, I mean, or I'd have rectal dysfunction, so we don't want that. 

Jackie: Is that the only thing?

Jen: That's the only end of it, but you know, there's still time, but I would be online, on Facebook groups for people with heart failure and over and over again, I would see people newly diagnosed come in terrified because they went to what we call Dr. Google. They went online and googled it and there's no filters on the internet. So you're going to get all kinds of things and some of it is scary as hell and some of it is misinformation. Some of it is geared toward doctors and you don't want to see or read or you might not even understand it. But the picture is alone. so I felt, well, I had this unique combination of having, I'm a patient. So I get it and from many points of view, and I'm a medical writer, so I know where to find the right information and I thought I'd put it all into a little guide that they could take with them to the, waiting room or wherever and read about it with filtered information, a little bit of humor and a lot of empathy because that's what we all need. 

Jackie: Absolutely. And so have you gotten feedback from people who have read specifically how to be sick and how it's helped them. 

Jen: Yes, and I find that people give it as gifts. Because especially if you read how to support, people aren't sure what to give and you know, we can only take so many lasagnas. 

Jackie: Right. Why is it always lasagna? 

Jen: It's always lasagna. Please people, find something else. 

Jackie: Yeah, I just- a total side note. I brought my neighbor a lasagna one time. Actually, I'm not even that fancy. It was like a baked dish. Same ingredients as lasagna, but it's the ADHD version. Right. And so, and then come to find out she was allergic to gluten and dairy and dah, dah, dah, and dah, dah, dah. And I was like, okay, I'm just going to take this back home. Like they didn't even take it for the rest of the family. They were just like, you should go. 

Jen: Yeah. And see, but that's one of the things when I had cancer, I had neighbors who set up people cooking for me and there was a schedule so that I wouldn't wind up with many lasagnas. And then, whoever is setting that up needs to find out what the allergies are. You might have new things like I'm supposed to eat low salt now because I have heart failure and heart failure takes on fluids like the Titanic and if I have too much salt. That's very bad for me. So don't bring me chips and salsa. 

Jackie: Right. And, takeout from a lot of places is filled with sodium.  

Jen: Right.  

Jackie: Wow.  

Jen: But gift cards are great though. If you do it right, gift cards are fantastic. Like do a DoorDash one and let them choose where they're going to our instacart or whatever. because it just gives them options and they don't have to worry about someone delivering food to their house and orchestrating all that. We had house wide construction at one point, you couldn't come to my front door. I had someone standing in the backyard in mud with food, like Jen, she didn't know how to get a hold of me. She couldn't text me because she's holding this. So yeah, we got her in. 

Jackie: Oh my gosh. Well, like I said, I don't think you need to be diagnosed with anything to benefit from the first book, how to be sick. I think it will help you with parents and any tests. I think it will help you with anybody in your life, including yourself in the future, arming ourselves with knowledge. We're not all medical writers, so arming ourselves with knowledge so that when things do happen down the road, and it's quite possible. Maybe you're not starting from scratch and feeling that overwhelm.  

Jen: It's the Just Diagnosed guide to how to be sick. Because we're not taught how to be sick, we're taught how to be healthy. And so many of us get sick at one point or another, you know, you're not going to jinx yourself reading the book. Everyone gets sick with something at some point. 

Jackie: Right. And it's not always something that is long lasting or that is a threat to your life. Sometimes it's pneumonia and you want to understand the difference between this scan and that scan. So yeah. In addition to the guide, How to be Sick, I’m also the author of the guide, How to Support Someone Who is Sick. I think it’s universal, but I want to know why do we need this book? Why can't we just be supportive in the way that we know how? 

Jen: Because we, fall short a lot. And I know this both from trying to support people myself and also having been supported quite a bit. we say things we shouldn't say, we do things we shouldn't do. And for some people, that's good enough but for people who want to do better than that, you know, there's always the, well, they mean well, but I think we can do better than mean well, I think we can actually do well, but you need to know how so, what are the things you shouldn't say is a big one. 

Jackie: hmm. It's 

Jen: And the cliches, those trite platitudes of everything happens for a reason. God only gives you, you know, never gives you more than you can handle. Yes, he does. That's why there's the suicide hotline. What doesn't kill you? What mutates and comes back and tries again? Hello, COVID! Yes, we can come up with better things to say, and one of the biggest things we say that seems benign is, if there's anything I can do. That's actually homework for the patient. Because now they have to fill in the blank and they have to figure out what other people are already doing and then assign you something to do that works for you. Well, these people are giving me lasagna already, and these people are taking me to chemo. I guess you can do this. So be specific about what you can do. I know that you need to get the kids to swim team practice. Can I do that for you on Tuesday? That's what people did for me. It was summer and kids had to get places. So they never had more play dates than they did. They were just at everybody's house that summer. And there was one time , they had swim practice or scrim swim meet that got rained out by a thunderstorm. And all of a sudden my kids were home when they weren't supposed to be and I was trying to nap and somebody knew that somebody came and just got my kids and said, I know you need to, I know you need to sleep. I'll take them for the afternoon. That's simple. 

Jackie: Should we be just doing and not so like my personality and probably your personality is like showing up and saying I know that this is what you need, even if you're not going to ask for it, I'm going to provide it. How do you know when they really don't want that help? 

Jen: You can ask. 

Jackie: Yeah. 

Jen: It's really very simple. I really want to help. I was thinking this, does that work for you? And you might not even want to ask the patient. You might want to ask the person closest to them, who's helping take care of them, or even better, because that person's usually very busy, the next person after that, the best friend, the brother, the sister. 

The mother who knows enough about them, call them or text them and ask them how you can help. I had this idea. What do you think of this now? She already got a blanket last week. Get her this instead. 

Jackie: Right, I like the idea of coming up with something and then they can correct you and or redirect you if necessary.  

Jen: I have to say, when I had covid slash heart failure And everyone was, in the entire world, was trapped at home. People felt like they needed to do something, but obviously no one could come over, So, just stuff showed up on my porch. It was just amazing things. I had these posts that I was signing off with Stay Gold, Ponyboy. 

I got so many t-shirts that said Stay Gold Ponyboy and different designs and whatnot. It was just, it was just sweet, very thoughtful. They were paying attention. 

Jackie: Yeah, that's amazing. I think that women automatically carry a huge mental load. 

for the family whether it's the family you've created or the family you come from. And, I think we naturally will still put that mental load on someone, even when they're sick where it's like, you tell me what to do, and that person. And the other thing too, is that when I had surgery, I'll just say, I loved every single person who helped. And we also didn't need to visit. 

Jen: No. And that's upsetting to some people. But if you're the patient or the person who's the point person for the patient, make sure you protect them. You don't owe anybody time to come. I had one woman come in and just cry the entire time. Now I'm taking care of her when I have cancer. No, no, no. Who is this helping? So if you need to not have, you don't have to have people over, you don't have to have people in your hospital room. That's really to make them feel better about taking care of you. So when you're the patient, my mother in law at the time said something really important to me when I had cancer. She said, now is the time to be a little selfish. And I loved that, because it's true.was the only way that I could get better for my kids is for me to be selfish. 

Jackie: Right. You have a whole list in the book. And it's interesting because a couple of years ago, I think, for breast cancer awareness month, I asked the community and the grown ass woman's guide on Facebook, those who have been in a position of needing help, what was actually helpful for them. And it was the meals, the errands, going grocery shopping, taking the kids, things like that. And you have a whole list. What are some of the other things that maybe we're not thinking of that we could support somebody who might be sick? 

Jen: There's a couple of them. I know somebody mentioned that they were in the hospital for quite a long time and a friend came in with dry shampoo. Because when you, especially if you're hooked on the thing, if you're hooked up to chemo or whatever, they're not going to let you take a shower. I finally convinced them to let me do that and swore that I wouldn't pull anything out. And then immediately things got yanked out and I had to pull the cord. They knew it. They knew it. But think about clever things like that or things that they're going to need when they get home. One of the biggest things is... Everybody thinks about the surgery or the event, whatever you're trying to get them to chemo, whatever it is, but nobody thinks about how two weeks later, all the food's gone. The flowers are dead and you still need help. So think longer term, especially if you have a chronic condition. 

Jackie: Absolutely. I think that same thing happens when someone loses a loved one. You know, that initial rush, like who's there, maybe if you're listening, you're the two weeks later person, you know, you send a little bit of love, but you send that real support a couple of weeks later when everything has dissipated a bit. 

Jen: And, I know I said it, but especially for people who have chronic conditions because people lose interest. Aren't you better? Oh, you know what? I have heart failure. I'm never going to get better. There are days that I do great. I went to the Springsteen concert in August and danced for 19,000 steps. It was a hell of a day. But yesterday, there's no way I could have done that. I just didn't feel good yesterday. So, make sure you support the people who are like this. It's not all straight up. Sometimes it's up and down. 

Jackie: Yeah. What about rides? Do you, especially for somebody with a chronic illness or treatments or whatever, I don't know that everybody can drive themselves and in the beginning all those rides are available, just like the meals and such, like, is that something we should be offering? 

Jen: Yeah, ask them if they want it. Some people don't want rides. I got rides to chemo. I was too sick otherwise, and I was in the hospital for a bunch of it. But for radiation, that was every day, five days a week. And I was feeling well enough to drive. I didn't want to find somebody to drive me 45 minutes each way every day at noon. So I'm sure people did offer it and I said, no, no, I got it. But don't take that personally when they say no, no, no, I got it. They have their reasons. And sometimes it's because I liked sitting in my car and crying the whole way there and back, and I didn't want people to see that. 

Jackie: Yeah. and that's a great point because sometimes we want to help and then that person doesn't want the help in the way that we offer and then we're personally offended. Well, I tried to help. So what do you say to that person? Do you find a different way to help? Do you just leave them alone? Like, how do you respond to that? 

Jen: The one way that everybody can help us to just listen and to learn how to listen. We all think we're good listeners. We are not all good listeners. We are listening to what they say, waiting for the moment we can say something and then injecting our own personal experience or trying to fix it for them. That's not listening. Listening is holding space, reflecting what they said, validating it, and letting them know that their emotions matter, whatever they are. we are, a lot of us are terrified by the realities of being sick. And feel like if somebody who's sick says, I'm scared, I'm going to die. Don't say that, that it's going to bring it on you and that makes them even more lonely. Now they're not going to say anything to what I call the muggles, the regular people who've never been through anything. I'm not going to tell them I'm terrified. I'm going to die because they can't handle it. But if you can be that person who can listen and can handle it, uh, you're worth a bazillion dollars. I would even recommend going, talking, listening, and training to do it. 

Jackie: Interesting. Never even thought of that. Is that a thing? 

Jen: Yeah, I'm trained in focusing, which is a mind-body way to access the inner wisdom in your body, and listening is half of it. So yes, there are places. 

Jackie: That's cool.  

Jen: If you are supporting somebody who's sick, don't assume that how you feel or what you think about the way they should be feeling. is how they feel or should feel. There is no should. They feel how they feel. So don't put your feelings on them. That's the first thing. If you are sick, you're not alone. You might feel alone. It is a very special brand of loneliness to be sick. Find other people who are going through the same thing or better yet have been through it, came out the other side because they have insights and they did it and you'll feel less alone. 

Jackie: Where are some of the places they could find those people? 

Jen: There are support groups at associations. So like the Leukemia Lymphoma Society, for instance, has support groups. There are places like Imerman Angels, which is also for cancer patients that will set you up with people who are in a similar situation. Like, you have such and such cancer and you have small kids kind of a thing. But they have it not just for cancer, but for the American Cancer Society, places like that. Be very careful when you go online. And go into those groups because there's misinformation and medical information that is incorrect coming from other patients. Everybody is scared and wants everyone else to feel the way they do. And always that way, I see that in heart failure. All I had to do was lose weight and stop smoking and now I'm all better and you can too. Well, okay, you have heart failure because of one reason. I have heart failure because my heart was fried. I was already not smoking and exercising, so that's not going to make a difference. So be very careful about other patients online, but if you can find somebody one on one who gets you, who's been trained in listening, that would help. That's who I'd go to. 

Jackie: Before we go, tell me about the third book in the Just Diagnosed guides. 

Jen: There's actually two more and I'm working on them. There are specific guides. So actually, it’s the Just Diagnosed Guide to Heart Failure. That was actually where it all started. I wrote that one first so that they can. Get off of Dr. Google and find out the information they need to know now. And the other one is sarcoidosis, which is another diagnosis I've had that I'm not even going to go into here. I've been diagnosed, undiagnosed, and now re-diagnosed. So I thought I would make a guide because it's kind of rare. The next one I'm going to do is leukemia and lymphoma. And then I hope to run out of diseases of my own and start doing other people's diseases. 

Jackie: That's quite a goal you have there, Jen. 

Jen: I'm working on it, but if I get erectile dysfunction, I will write that one. 

Jackie: Yes, and I will have you on again to talk about that for sure. I just really have so much respect for you to take everything you've been going through for over a decade a long time now… 

Jen: Yeah, sixteen years. 

Jackie: …and to sit down and to write these guides and I think you're helping a lot of people. 

Jen: That's all I want to do. I want to take the loneliness out of being sick. That's it. And this is my way of doing it. 

To get any or all of Jen's just diagnose guides, visit grownasswoman.guide/191, and to connect with Jen on Instagram, follow her @jensingersaid. Thank you so much for listening. For more information links to related episodes and a transcript of this episode, visit grownasswoman.guide/episode191. And let's connect on social at grownasswoman.guide. By the way, if you like this episode, please consider sharing it with a friend. And I would love it if you'd share a rating and review on your favorite podcast app. Until next time, you are a grown-ass woman. Act accordingly. The Grown-Ass Woman's Guide is produced by Grown-Ass Creative. Immediate and marketing agency powered by grown-ass women over 40.