Dibs Baer is a New York Times best-selling author and celebrity journalist. The author/co-author of six books, including, most recently, Lady Tigers in the Concrete Jungle: How Softball and Sisterhood Saved Lives in the South Bronx, she was formerly the executive editor of InTouch Weekly, and has worked on staff at numerous other publications. While she has been published extensively across varied media, she’s best known for her celebrity interviews. Dibs and Lauren connected over a piece Dibs was writing for Creaky Joints, the foremost online publication for arthritis patients (including RA and fibromyalgia patients, among others). It came to light that Dibs lives with rheumatoid arthritis (RA), and has for some time. It also just happens that she is transgender. The intersection of layers of invisibility in Dibs’ life became a conversation, and Lauren couldn’t help but invite her on the show to share more. Uninvisible community, meet Dibs!
Key links mentioned in this episode:
Tune in as Dibs shares…
- how her early symptoms manifested
- that fatigue comes hand-in-hand with chronic pain, and that these symptoms create mental health concerns of their own
- that her pain was largely in her extremities — hands and feet
- about the Frankenstein shuffle, as experienced by RA patients
- typical age of onset for RA
- that she lived her early years as an out lesbian, and came out as transgender around the same time she was diagnosed with RA
- that her family was very supportive of her coming out
- that she experienced body dysmorphia in relation to her gender identity, and had difficulty looking at herself in the mirror…and that this identity confusion was compounded by the onset of RA, which made her even more confused and angry at her body
- that she has healed mentally with years of therapy
- that she is still legally known by her female-identifying first name, although she goes by “Dibs” — and that this can become an emotional hardship when being called at doctors’ offices and elsewhere
- that she had her breasts removed in 2012, and is uncomfortable showing her scars at certain doctors’ appointments because she fears the judgment of others
- that her treatment includes infusions of methotrexate, a cancer drug — but used in MUCH smaller doses for RA treatment, as well as Remicade (an immune suppressant)
- that RA is closely related to psoriatic arthritis and ankylosing spondylitis
- that one of the most common complaints among RA patients is not wanting to take methotrexate infusions — but in many cases, it’s a necessity for quality of life
- that getting an RA diagnosis made her start taking much better care of herself
- that she fears smoking may have triggered her RA
- that there is a high prevalence of RA among first responders from 9/11 — and she lived directly across the river from the Twin Towers and was in NY in 2001
- that she now plans each day around flares as they come and go
- that her treatments can cause gastrointestinal side effects, and that those can be difficult to work around day-to-day
- how difficult it is to have an invisible disability and maintain a 9-5 job
- that she has to plan her life around infusion scheduling — a constant 8-week cycle
- that the US healthcare system doesn’t help all people equally
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Lauren: All right, guys, thank you so much for joining us today. We are here with Dibs Baer.
Lauren: Hello! Dibs is an author of an upcoming book called Lady Tigers in the Concrete Jungle. And also a journalist, who lives with RA. So Dibs, thank you so much for joining us.
Dibs: Thanks for having me. It’s great to be here.
Lauren: Yeah, absolutely. So why don’t we start from the very beginning. Can you tell us when and how you first realized that you had rheumatoid arthritis, and what it is?
Dibs: Sure. It was about 10 years ago. And I’d been starting to have really strange aches and pains in weird places. My jaw hurt really badly.
Lauren: And it wasn’t TMJ or anything?
Dibs: No, it was almost like a muscle pull in my face. And then I was also having chest pains that weren’t heart attack pain; again, it was like muscle strain across my chest.
Lauren: I feel like people with RA always manifest in the chest somehow. People I’ve spoken to … that’s usually that’s how they catch it.
Dibs: It’s really weird, yeah. And then also the other major problem I had was my foot. I could not have even the simplest things touch them. Bedsheets? Excruciating. And it got worse and worse over time. I finally went to the doctor after putting it off.
And they told me it was RA, which I knew my grandmother had had.
Lauren: Okay, so it was in the family.
Dibs: It was in the family, but I didn’t really know anything about it. So it wasn’t surprising at the time they told me that, but then I had literally no idea what it was.
Lauren: Right. So you’ve learned a lot obviously, because you’re writing for Creaky Joints and a lot of other publications that really talk about these issues.
Lauren: So, what steps did you take to control your health once you got your diagnosis?
Dibs: Well, the first thing when you get RA is that until you are on your medicine, you can’t really do much.
I was in excruciating pain for six months. It takes that long for the medicine to kick in.
Lauren: Wow, six months!
Dibs: It can take that long; it can take anywhere from a few weeks to three to six months. I remember crying to my dad on the phone saying, “I can’t take this anymore.” Finally one day it was almost like the skies opened up, and I was like, oh, I’m feeling normal again!
Lauren: So there was really a before and an after?
Dibs: Yeah. The period of time between when the pain starts and before your medicine kicks in is really excruciating for a lot of people.
Lauren: Well, especially when you have a diagnosis. I know that waiting for a diagnosis is awful, right. But then once you have a diagnosis, and you’re like, yes, I can do something about it! Waiting six months for this to actually start working, that’s got to be emotionally taxing as well as physically.
Dibs: All of it. It’s the fatigue. It’s the pain.
It does a number on your head, a number on your body. It was really painful.
It was all about surviving, honestly. Really. And then once I started feeling normal again, then I made some changes to everything else. But it took a while, for sure.
Lauren: It sounds like, also … because you mentioned that you were having that pain in your feet, for example … that the pain was not just in your joints. It sounds like everything is inflamed, right, like your skin as well?
Dibs: I didn’t have a skin issue. A lot of times with RA, it comes in pairs — feet, hands, knees, shoulders. Some people have all of it. I had hands and feet. So my hands were also very tender.
Lauren: That’s got to be hard as a writer.
Dibs: Oh, very difficult. So hard. And also the foot thing … there’s a nickname for it, the Frankenstein Shuffle.
Lauren: Oh, that makes sense. I can picture it in my head when you say that.
Dibs: I couldn’t walk upstairs. I couldn’t walk on inclines or declines. It was very difficult.
Lauren: Because the weight shifts that way and changes the dynamic.
Dibs: Right. And it’s a really strange pain. I’m sure with most chronic illnesses, it’s really hard to put into words what it feels like.
Lauren: For people don’t understand it, for sure.
Dibs: Yeah. I know a lot of people who have shoulder, knee pain. Excruciating. There’s some burning. You know, a cocktail of painfulness, really.
Lauren: The worst pain. I’m glad we can laugh about it now!
Dibs: I know. It’s not funny at the time, at all.
Lauren: I can imagine.
Dibs: But yeah, so that was my main thing — feet and hands.
Lauren: And that also impairs your mobility, and you have to change your entire lifestyle, I imagine, until the pain is receding, thanks to drugs.
Dibs: Yeah, I mean, I was about to turn 40 — and having trouble going up and down stairs. And what that does to you, mentally, is brutal. You can’t believe you’re that young. And you don’t know that it’s ever going to change and get better when you’re first diagnosed — because it does take a while. And you think … is this it?
Lauren: At 40, too …
Dibs: And it’s actually very common for women in their 40s. The RA thing is mostly, from what I remember from reading about stuff, is mostly women. And for women, it can appear usually in your 40s or much older, like 70s. So I got it right when it starts.
Lauren: Some people get it even younger, and even older.
Dibs: Yeah, but most commonly, I think, 40 is the age for women.
Lauren: Do you think it’s associated with the onset of menopause, or changes in hormones?
Dibs: I haven’t heard anything about that. I’m not sure about that.
Lauren: I don’t know either.
Dibs: I probably should know that.
Lauren: I think you just need to know about you!
Dibs: It’s a bummer. I remember Googling … you know, when you get a new diagnosis, and you Google …
Lauren: Dr. Google!
Dibs: Right, and all the scary things I read. Like, one of the very first things I read after I got diagnosed was that one-third of people with RA die within 10 years. What you don’t think about further is that most of those people could be diagnosed when they’re 80, right. So yeah, that makes sense that they might die within 10 years! I learned a lot of lessons about that, about reading stuff; like really not trying to scare yourself. Especially with this. It could shorten your lifespan for sure. But if you take care of yourself, and you’re lucky, you can live a long time with RA.
Lauren: And I guess that also has to do with access to care. And making sure that you’re doing all you can for your wellness, even when you’re not at the doctor’s office.
Lauren: One of the things that you and I talked about before you came here, and I wanted to talk about this in the interview as well, is that you not only live with invisibility when it comes to illness — but also with regard to gender identity. And I was wondering if you could talk to us a bit about your experience of identity, and how these conditions or states of being have overlapped for you with the RA. And with your own coming out.
Dibs: Okay. I came out as transgender, actually around the same time, actually, that I got RA — which is interesting. I’d gone through life saying I was a lesbian, which I knew I wasn’t. I knew I was transgender. And then … it was 2012, so that was about seven years ago, I had my breasts removed. And I kind of went through the coming out process, like re- coming out again. Which is weird, coming out twice. I’d already done it with my parents 20 years ago. And then I did it again.
Lauren: Was it hard the first time?
Dibs: I was actually very lucky that I have a very progressive, supportive family. It was not as hard as it is for a lot of people, for me. I actually had a lot of support. So I was very lucky in that sense.
But at the same time, coming out as transgender … it still took me another 20 years, or almost 20 years, to do that.
Because I was figuring all that out. I got my breasts removed in 2012.
Lauren: So you did that pretty immediately after coming out, it sounds like.
Dibs: Yes, I did.
Lauren: Obviously it had been in your mind for a long time anyway.
Dibs: I’d gone through like 10 years of therapy. I was finally ready. This was before Caitlyn Jenner …
Lauren: Before it got more mainstream.
Dibs: If you want to call it mainstream.
Lauren: Well, recognized as mainstream.
Dibs: Yeah, yeah. It was still a little scarier than it would even be now, maybe.
Lauren: It was uncharted territory.
Dibs: Exactly, yeah. All this kind of happened at the same time, interestingly enough. I never really thought about that.
Lauren: That’s got to be a lot, emotionally. You were handling a lot of stress, and that is compounded in your body’s reaction, too.
Dibs: I think that it’s possible that having RA definitely made me … you know, you’re thinking about your body a lot, and as a transgender person who wasn’t able to be out, I did not like looking in the mirror. Most of my life, I hated my body. And then when you have something like RA, you hate your body even more. Maybe I didn’t make that connection. But I think I wanted to be as happy in my body as I possibly could be.
Lauren: So in a way the RA kind of gave you the freedom to say, this is how I need to live my life.
Dibs: I need to do this, yeah.
Lauren: That’s kind of an amazing revelation. It’s a gift really.
Dibs: It is a gift, honestly. And it’s the best thing I ever did for myself. There’s no question about it. I’ve never been happier.
Lauren: Never been happier, post-diagnosis!
Dibs: I know, right? And then, in terms of being transgender and having RA … I think we talked about this a little bit … For me, it’s hard because legally my name is Deborah. But I go by Dibs. Everyone in my life calls me Dibs.
Lauren: This is what you were mentioning about the dead name.
Dibs: Yeah, exactly. Some people call it the dead name. So legally, I’m Deborah, so when I have a million doctors’ appointments, everyone calls me Deborah. One doctor the other day called me Tibs instead of Dibs, and I was, like, that’s fine, I’ll take that over Deborah! So that’s been a little difficult. It’s making me kind of go, I think I’d better legally change my name.
Lauren: Well, and are you thinking about also not just changing your name, but your gender marker as well?
Dibs: I haven’t decided that yet. I’m not a conspiracy theorist.
But there’s a part of me that’s, like, do I want to register as this with what’s going on in the world right now?
Lauren: I actually don’t think that’s a bad way of thinking about it. I think that’s really circumspect. It’s intelligent.
Dibs: Yeah. I think it’s interesting. I’m still trying to figure out what I’m comfortable with. I’m not on testosterone; I decided not to do that.
Lauren: You’re really just doing you.
Dibs: Yeah, I just doing me. But in terms of the doctors’ appointments and things like that, I have a giant scar across my chest. And luckily with RA appointments, I’m not having to …
Lauren: … take your shirt off.
Dibs: And I don’t have to get in robes a lot, and things like that. But it’s more like appointments with the dermatologist or something, where, you know … But there are always random appointments for things related to RA that it is a little fraught.
Lauren: Well, is that the kind of thing where it would make things more comfortable for you if maybe the techs or the nurses even just said to you, “Are you comfortable with removing your shirt?” Because it sounds like you’re not necessarily comfortable showing your scars.
Dibs: I’m not actually, no; I’m really not. And I think it’s that I’m worried that people are not accepting of it.
Lauren: Have people not been in the past? Is that where that worry comes from?
Dibs: When I was at the dermatologist’s office and there were, you know, three people in the room. And I was not expecting it. I went in for something random, and they were, like, “Oh, you haven’t been here in a while, so let’s do the whole full body thing.”
Lauren: We live in California, so that is a smart thing to do because we’re out in the sun all the time.
And then I literally had a panic attack because here are three strangers; I don’t know if they’re accepting of it.
Lauren: And in a way also, just in terms of patient/doctor relationships or relationships with any of our caregivers, it’s kind of not for anyone to pass judgment at all. So in a sense it’s really that projection of fear, it sounds like. Certainly, in the wider world, you can be met with disagreement, or people who don’t believe in being transgender or anything like that. Which by the way, we fully endorse — believing it! We don’t endorse disbelieving when people tell you they are and who they are. But that there can be that fear with anyone who’s new, who you don’t know. And there’s got to be a way to bridge that gap, as well, with caregivers, right? Some kind of statement that we make every time, that’s, like, ‘Hey, we want you to be comfortable.’ That that’s not even a discussion that’s happening before you’re asked to disrobe is kind of weird. I mean, it doesn’t happen to me. No one asks me if I’m comfortable; they just throw you the robe. But it would be so much better if people just said to you, “Hey, are you comfortable with that?”
Dibs: Totally. And it’s funny because the airports are doing it now.
Lauren: In terms of pat-downs and stuff?
I get stopped every time because I have a scar that shows up on the X-rays every time.
Lauren: Oh, on the 3D X-ray?
Dibs: Yep. Just recently, they’ve started asking me what gender TSA agent I want to pat me down.
Dibs: Yeah. But they do it really nicely.
Lauren: Okay. So that’s not asking you what your gender is. They’re asking, “Who would you prefer?”
Dibs: They’ve been very polite about it. And that’s very new. No one’s saying that at the doctor’s office.
Lauren: And that’s got to be tough, because you’re already dealing with your own insecurities. Even though you’ve made huge leaps forward in terms of self-acceptance and being who you are in the world. To be dealing with your own concerns and worries that other people will judge you. So that’s already one invisible problem that’s then causing emotional stress. And then having RA and living with a condition that’s physically draining and wearing you down. These two things are very simpatico in a way.
Dibs: I would say so, for sure. No question.
I will say that I love my RA doctor. He’s very accepting.
Lauren: And he’s a rheumatologist, I would imagine.
Dibs: Yes, he’s a rheumatologist. He’s great.
Lauren: So you’ve always felt comfortable with him.
Dibs: I feel really comfortable with him.
Lauren: That’s really good. In a way, sometimes it’s also just rapport, isn’t it, with your doctors. Sometimes you get along with them, and sometimes you don’t.
Dibs: And it’s so crucial, right?
Lauren: But that’s a really important point, isn’t it. In this world of invisible illness or any kind of invisible state of being, it’s something where we really have to find the caregivers who we feel comfortable with.
Dibs: Right, and who don’t make you feel like you’re invisible, that you don’t matter. And I think front office is really important.
Lauren: Yes, because that’s the first thing you see at the doctor’s — the people who are sitting behind the desk.
Dibs: And with RA … because I get infusions of Remicade, these are people that I see every eight weeks and spend three hours with. You want to make sure that you like them!
It’s a relationship, you know, and I don’t think I’m going to stop doing that anytime soon.
Unless I have some weird side-effect.
Lauren: Right. And that’s not the only thing that you’re getting in infusions anyway; there are a few different things? Why don’t you tell us a little about the medications?
Dibs: Okay, so I take methotrexate.
Lauren: And this is one that we were talking about, that’s a form of chemotherapy?
Dibs: Yes, it is a cancer drug and people get really freaked out about it, but it’s actually way, way less of a dose than cancer patients. It’s used for breast cancer treatment. But for RA, at a much lower dose, it has a different effect on the body.
Lauren: You were saying it’s like 150, right?
Dibs: Yes. People get freaked out. I’ve written articles about it.
Lauren: Which we’ll link to on the episode page.
Dibs: And people should know that, yes, it is a cancer drug.
But as my doctor explained to me, it’s like the difference of swimming in a pool and drinking a glass of water. They’re both water, but they’re completely different amounts.
That’s the analogy that he used about it. And methotrexate has been researched and tested on millions and millions of people, for a really long time. It’s very safe and very effective.
Lauren: And it’s helped you. That’s the thing.
Dibs: Yeah. I admit that when I first got diagnosed, there’s that fear of, oh my God, I can’t believe I have to take medicine for the rest of my life. I’m so young. What is this gonna do to me?
Lauren: But then you start feeling better, and you’re, like, no problem!
Dibs: I know, right? Give it to me! Give me more!
Lauren: Give me the drugs! (laughs)
Dibs: Give me the drugs! I’m in a lot of Facebook groups for RA. And for psoriatic arthritis, and for ankylosing spondylitis. Because they’re all related to each other. And one of the most common things that comes up is, “I don’t want to take my medicine. I don’t want to take methotrexate.” And people wanting to do alternative things. Everybody can do whatever they want.
But if you let RA go, it’s systemic.
You are going to not only maybe permanently damage your body, but your organs can shut down. So it’s a question of what kind of quality of life do you want now? And everybody has to make their own decision about it.
Lauren: And it sounds like you really chose to live your life in many ways, right?
Dibs: Yeah, I did.
Lauren: So you have the infusions of the Remicade. And the methotrexate. What else do you do?
Dibs: I take folic acid, which everybody gets when they take methotrexate, and that’s to minimize some of the side-effects that could happen, like hair loss. I haven’t had that.
Lauren: No, you have a full head of hair!
Dibs: I’ve got a gigantic full head of hair! I think it’s helps with nausea and stuff like that. And with, I believe … and we should check this … but, like, bone marrow? Maybe? I can’t remember. But there are some important things it does. So you take that one pill that every day. And then, I, personally take levothyroxine.
Lauren: That’s right. Because you said your rheumatologist, when you first met him, said, “Oh, you’re dealing with fatigue and you’re dealing with these other symptoms. So let’s test your thyroid.” Which was a really smart thing to do. And found out that you have hypothyroidism. It’s great. And I was asking you before we hit ‘record’, too, was the levothyroxine alone enough for you? Did you feel the difference? And you said yes. It’s so great to hear, because it’s like the 50/50 in this hypothyroidism community, whether people need the T3/T4 combo, or whether you’re good on just the T4 or the levothyroxine. And it’s great to hear that you’re functioning well on that.
Dibs: I am functioning well, but then, I didn’t even know that you could do the other thing. So maybe I should ask, I don’t know?
Lauren: That’s the thing, just knowing and asking, but it sounds like you felt a difference with the levo. If you hadn’t, then that would be the next step.
Dibs: Before I was on it …
I literally would think about walking my dog around the block and wonder, oh, can I make it?
That’s how exhausted I was.
Lauren: I used to have to sit down for a few hours after a shower. Or just a nap after shower, because it can be just so exhausting.
Dibs: I still take a lot of naps. I’m not gonna lie.
Lauren: Naps are the best.
Dibs: I’ve mastered the power nap in the afternoon, about 30 minutes.
Lauren: This is the one thing I’ve never been able to do, the power nap. Because once I’m out, I’m out for a few hours.
Dibs: I don’t know how I did it, but I did it. And it’s 30 minutes. Can you set a clock?
Lauren: Yeah, but it doesn’t mean it’s gonna work!
Dibs: I don’t know how I did it. But I can be out hardcore on the couch, not in my bed. Everybody else in the world takes siesta. It makes sense. And I find it rejuvenating, but I know that a lot of people can’t do it.
Lauren: I bow down to you and your napping skills! (laughs) So, did you find that you ever needed an advocate in this road to diagnosis, to treatment? Did you ever find that you leaned on your friends and family, or brought people to appointments with you? Or did you really become your own advocate with your doctors?
Dibs: I think I became my own advocate, but I think I’m used to doing things on my own. I’ve always been a very independent person, though; I’ve been single most of my life. And my family lived in other cities. So it was about figuring it all out on my own. Making sure I had good care.
Making sure I took care of myself. Which I didn’t do for a long time.
Lauren: And do you think getting the diagnosis made you change everything around and start taking better care of yourself?
Dibs: Absolutely. There’s no proof whatsoever, scientifically, that smoking causes RA.
Lauren: But we know that it causes bad things!
Dibs: It causes bad things. I smoked a lot for 20 years, and I quit when I had my surgery. I had been wanting to quit. And it gave me an excuse. When you’re healing from that surgery, the last thing you can do is go smoke a cigarette. So it was the perfect time to get it out of my system and all that. But looking back on it now, I really, really regret smoking. Because I really think it might have triggered my RA.
Lauren: Do you think if you hadn’t smoked, maybe it wouldn’t …
Dibs: You know, my grandmother had it. I don’t know. You know, something else interesting … I don’t know if this is too off-topic, but I lived in New York City on 9/11. I lived in Brooklyn Heights, which is the neighborhood right across the bridge.
Lauren: Yeah, right across the river there.
Dibs: Yes. And I just read an article that there’s a high prevalence of RA in first responders, people who worked at the site afterwards and in my neighborhood, who are pre- genetically disposed. And I am because of my grandmother.
So I’m thinking about getting into that study. Or just telling them that I lived there for six years after 9/11.
Lauren: I think that’s really smart. We’re recording on 9/12. Yesterday was 9/11 and it was the 18th anniversary. Which I can’t believe.
Dibs: I can’t believe it either.
Lauren: It could very well be related.
Dibs: I don’t know. I think it was a couple of things. I mean, who knows?
Lauren: Well, this is the thing with all of these illnesses, right — we know that there are risk factors or certain behaviors that can trigger. But it’s often not just one thing. If it were just one thing, nobody would be doing it.
Dibs: Right. And if they knew it, everybody would stop it.
Lauren: Exactly. Although we say that of smoking, and everybody does it anyway!
Dibs: That’s very true; that’s a very good point.
Lauren: But then, everyone always has a story of, like, a grandfather who lived until he was 103!
Dibs: No, it’s true. Actually, my best friend’s dad has RA. And he’s 87 years old, and he smokes like a chimney. He smokes Marlboro Reds, at least a pack a day still.
Lauren: That’s got to be also the worst cigarettes you could possibly smoke, right?
Dibs: I know.
People say, “I don’t have any regrets.” I have regrets.
Would I have gotten RA anyway, because of my grandmother and genes? Possibly. But smoking, for anyone out there listening … just stop. Don’t do it. It’s horrible. It was a waste of life for so long.
Lauren: Absolutely. There are a million other things there, too. Like diet and exercise, and lifestyle. Living in Brooklyn Heights. Those are things you can’t regret.
Dibs: No, I don’t regret that at all.
Lauren: And I’m sure, also, the things that you’ve gained post- diagnosis, it sounds like, were worth the trials and tribulations.
Dibs: I would say so. I used to be a three-sport athlete in high school. I was very, very athletic. And since I’ve had RA, there are a lot of things I can’t do anymore.
Lauren: That’s frustrating.
Dibs: I can’t run, I can’t jump. I can’t play tennis anymore. Things that I really love. But on the good side of that, sometimes these things force you to find new interests and hobbies. And so now I hike a lot. I can walk for an hour, 15 minutes — that’s my cut off, and then my foot starts hurting. I do HIT classes, high interval training — because a lot of those things don’t involve running or jumping. And they can modify.
Lauren: That’s really good.
Dibs: Yeah, so I’ve become a gym rat. I hated the gym before. And now I love the gym!
Lauren: That’s great! Most things change over time, too, our interests. You might have gotten into hiking anyway, because you moved to California and you wanted to be in the great outdoors.
Dibs: It’s possible, I don’t know.
I just think, for all the horrible things we go through, sometimes there are good things that come out of it.
And I try to always think about that.
Lauren: Yeah, there’s the good and the bad. You can’t have the flowers without the rain, right.
Lauren: So, what does a typical day look like for you now? Are you aware of managing your symptoms, or has it become kind of second nature?
Dibs: I would say I’m aware. Because every day … it could be literally the moment I wake up, walking to the bathroom, I know what kind of day it’s going to be. Because RA comes and goes. You get flares. So I can tell you by stepping out of bed what kind of day it’s going to be.
When I walk my dogs, does it feel like torture to get up the block and back?
So just every day is different, really.
Lauren: And you’re making adjustments accordingly, I guess.
Dibs: Yeah, definitely.
Lauren: Are they big adjustments … does it make a huge difference on a day when you’re having a flare, and when you’re not having a flare?
Dibs: Yeah, it does. It can definitely change your day.
Lauren: It sounds like you’ve got a rhythm down, though. It’s not disrupting the way you’re structuring your time, like you would have in the beginning?
Dibs: No. In the beginning, it definitely did. And I will say that, I moved from New York City to California — and now I’m driving. Could I still live in New York City with my RA where it’s at? I don’t think I could anymore. Because you have to go up and down the subway stairs, and …
Lauren: And you have to stand on the subway, which is tough. Especially because people can’t see. It’s not like you’re walking around with a walker or a cane.
Dibs: Totally. I go to New York a couple of times a year. And by the end of the week, I’m, like, okay, I don’t know how I did this when I lived there. Because it’s so hard on your body.
Lauren: Oh, God, I’m going next month. I’m dreading it!
Dibs: No, I mean, it’s wonderful.
Lauren: This are the days you call a cab.
Dibs: A lot of Uber-ing and a lot of cabs. But it’s a hard city if you have a chronic illness like RA, it’s brutal.
Lauren: It’s interesting because I’ve interviewed a few people from the UK, and London specifically. And they’ve got a program there where you can get these badges that say, “Please offer me a seat.” Blue buttons that you wear. They’re pretty noticeable. And it’s really interesting that they have something like that. They don’t have that in every city in the UK; they only have it in London.
Dibs: I love that.
Lauren: Isn’t it wonderful. And it’s free, so that anyone who has an invisible illness can make it more visible to people.
Dibs: Oh, that would be amazing.
Lauren: Because right now, if you’re pregnant or elderly, you’re offered a seat. If people are feeling that generous!
A lot of the conversations in the RA community are about handicap parking spots, because people get yelled at a lot.
Lauren: I hear stories like that all the time. It’s so frustrating.
Dibs: And it’s a real problem. Or riding on carts at the grocery store … people give them dirty looks, like, are you fooling around? What are you doing?
Lauren: As if it’s anyone’s business.
Dibs: But yeah, the handicap parking spot thing is a real issue.
Lauren: Speaking of this stuff … you talked about how you’re very aware of your rhythm now. I know you’ve mastered the power nap. But how are you balancing the demands of work and life as you live with this invisible condition? Is it an uphill battle a lot of the time?
Dibs: It is. First of all, since I write … I write from home now … honestly, there are days where I think, I don’t even know if I would be able to have an office job. And I really feel for people who have this, and have flares, and have to actually commute …
Lauren: … show up.
Dibs: Show up, be present.
Lauren: People don’t realize how much energy it takes to just be in the room.
Dibs: It’s really difficult. And, you know, there’s a lot of side-effects. There’s like bathroom issues. There’s a lot of stomach problems and gastrointestinal things. That’s a side-effect of methotrexate. Methotrexate, the Remicade, all of it. In terms of having to go to doctors’ appointments.
If I had to go to a regular job in an office, are they going to let you take off three hours to go do your infusion every eight weeks?
I mean, they have to, technically.
Lauren: But they could take it out of your holiday time. And then when do you actually rest?
Dibs: They’re not even allowed to do that, I don’t think. I just did an article for The Muse …
Lauren: That’s another article we can post.
Dibs: On when to disclose your chronic illness at work. And should you, and how.
Lauren: That comes up a lot. Because you’re not going to disclose it in an interview, right. Because you don’t have to legally.
Dibs: Most people don’t. And you don’t have to legally, right.
Lauren: It’s interesting, I had someone on the show who’s a type 1 diabetic. And he said to me, he didn’t disclose right away with his co-workers. But eventually, he ended up doing it because they were on some kind of retreat and he became closer with people. But it really depends on what your relationship is like with people. Now that’s sort of the case. But it shouldn’t depend on what your relationship is like. There should be some kind of loophole where, legally, you’re allowed to disclose this information once you’re hired so that people can at least be aware. Because someone with type1, you might have to perform CPR or perform some kind of emergency service before emergency services arrives. And you need to know what to do. So if there were at least a health liaison at every corporation or something …
Dibs: That would be nice. Who’s gonna do that? You’re dealing with so many things. You’re dealing with pain. You’re dealing with relationships that are affected by this. You’re dealing with the work stuff. There is so much. There’s so much.
Lauren: And if you’re working a 9 to 5 job as well, in a way, your body’s not going to necessarily be able to keep up with you, is that.
Dibs: Honestly, I don’t know.
I feel fortunate in a way that I can work from home.
Because I don’t know how I would do it, because I do have so much fatigue. I have gastrointestinal issues, all of it.
Lauren: And you just want to be near the comforts of home, too. At home, you can also set yourself up for success, right. I have my ice packs and my heat packs where I need them. I have the toilet there if I need it. And I have my bed to flop into. You have all your medications if you need to take a little extra something for pain.
Dibs: Exactly. I think fatigue is probably my biggest issue because of the Remicade.
Lauren: Okay, so that’s a side-effect.
Dibs: It’s a major side-effect. I would say, the week after you get it done, you are bone tired. I mean, like, exhausted.
Lauren: This is the distinction that we make a lot on the show, to make it clear to people who aren’t Spoonies, who aren’t part of this community … fatigue is different from just being real tired, from having a rough week. You can’t function. Your brain stops working, as well as your body.
Dibs: Totally. Yeah. A lot of people actually do take those days off of work. Because you’re not gonna be able to do anything. So it affects a lot of your daily life, for sure. I would say for the most part, I’m okay. I’m functioning; I’m doing mostly everything I need to.
It’s just that every once in a while, I’ll have a flare.
Or the side-effects of my infusion, which takes you out for a couple of days.
Lauren: At least you can also plan for that, right? Like, after your infusions, for a couple of days you’re going to be a little more rough around the edges!
Dibs: Yeah, for sure.
Lauren: And that also sucks. The medication that makes you feel better also makes you feel kind of crappy in some ways, too.
Dibs: For sure.
Lauren: But I suppose, the fatigue is better than the pain.
Dibs: The fatigue lasts a couple of days. The infusion lasts about six, seven weeks. So you have six, seven weeks of feeling pretty decent. And then the week before you get it again, you’re hurting. You kind of can’t wait to get it again.
Lauren: Is there a reason why they don’t do it like a week earlier or something? Is your body not supposed to have as much?
Dibs: I don’t know the exact particulars of it.
Lauren: I‘m sure everyone’s dose is different, too.
Dibs: Well, I think some of the medicines have doses that are recommended by the manufacturer. And then there are different infusions.So it just depends. Some infusions you do for a half-hour.
Lauren: Which is a lot quicker.
Dibs: Right. My infusion takes two to three hours. And it depends on your body weight. And there’s all sorts of different things that that go with it. But yeah, for whatever reason. You can’t miss, that’s the other thing.
Lauren: If you miss, you’d probably be in pain anyway.
Dibs: You’d be in pain, but then also you have to reload. So then you have to do it every couple of weeks for a while until it reloads.
Lauren: Oh, that’s frustrating. So you’ve got to plan your life around it. You can’t go on a long holiday to Europe!
Dibs: No. I’ve had to do it a couple times where, you know, life gets busy. But they’re very strict about it. Every eight weeks, you’ve got to go within that window.
Lauren: And you’re also obviously very aware of that now as well … sort of planning your life out, and going, okay, I need to make myself available.
Dibs: Yeah. It’s a lot of time. It’s a lot of effort.
Lauren: And that’s a lot of mental energy that you put into the planning. And all of these things take a toll on our bodies, too. So, we were talking about you when you take a disabled parking space, and things like that, and judgment from others. How often are you confronted and forced to justify your RA to other people? Have you had any interesting anecdotes about that, that have been difficult or frustrating or learning experiences for you?
Dibs: Yeah, it happens a lot actually. One funny example I can think of right off the top my head is shaking hands with people.
I do not enjoy shaking hands with people.
Lauren: That’s so funny because you went to shake my hand, and I was, like, “Hug me!”
Dibs: I know. Thank you for the hug!
Lauren: You’re welcome!
Dibs: Women don’t tend to tend to crush your hands like a man does! But if my hands are hurting — which is frequent … I mean, you can kind of see they’re a little bit puffy …
Lauren: Oh, yeah, you get like inflamed.
Dibs: I get inflamed, and some days, there’s a shame or an embarrassment to someone wanting to shake your hand … and you don’t want to explain that. That happens to me constantly. And then I just stick my hand out and think, okay, it’s gonna hurt. Then I’ll be fine five seconds afterwards.
Lauren: You know who does that all the time … casting directors. I learned this when I was an actor. I would go to auditions and go to shake their hand … and they shake so many people’s hands, and they didn’t want to get sick. This is in New York, right. That they would just go, “Germs!” A lot of people use the germs excuse! But then that also makes you look like a hypochondriac!
Dibs: It kind of makes you look like a jerk, right.
I would just rather take the crush … just crush my hand, I’ll be fine.
Lauren: Now, but that’s interesting, because that’s a mindset thing. Do you think if you were someone else, maybe you would go … no, I’m not gonna put up with that crushing of my hand.
Dibs: A lot of people don’t, actually. I think there’s a lot of planning ahead you have to do sometimes. To sometimes think about what you’re going to say to people in different situations.
Lauren: To create accommodations for yourself.
Dibs: Yeah, totally, absolutely. The hand one, I’ve kind of let go. It’s just like, whatever. It’s fine. I’ll get through it.
Lauren: I’m glad I hugged you instead!
Dibs: I like hugging anyway.
Lauren: Good! I thought for a minute, maybe Dibs isn’t a hugger. And then I was, like, No, no, we hug here!
Dibs: Yeah. So that’s one. There are other ones where … I think I mentioned before, I can’t walk for a long time. There are certain things I can’t do.
And having to explain that to people who don’t get it is is hard.
Really hard, and embarrassing. Actually my girlfriend and I, when we were first dating, it was really difficult, because she’s a lot younger than I am.
Lauren: And she’s more active, too.
Dibs: Yeah, for sure. And she’s really great about this. But she still didn’t really get it at the beginning. When I would say to her when we’d go on vacation … I’d say, I can only walk for an hour. And an hour into it, we’re nowhere near where we need to be, sightseeing. And it caused a lot of huge fights.
Lauren: Because also, by the time that you’re starting to feel pain, it gets harder to communicate when you’re dealing with physical stress. Your brain starts to shut down when your body’s screaming at you.
Dibs: Totally. And it took me a long time to really just put my foot down and be, like, I cannot do this. And not push myself to do things because I was embarrassed or wanted to make someone else happy. I definitely have moments where I’m walking like Frankenstein. And I don’t know what people think.
Lauren: Well, it’s good not to even worry about it. I’m not even gonna let you go there! So in what way do you think our health system is working for patients, especially in your experience? And in what way do you think it falls short or might require improvement? It’s a big question.
Dibs: It is a big question. I think that I pay a ton of money for my insurance per month. I’m fortunate to be able to do it. Without it, I would be in a lot of trouble. And even with that … I have great insurance, and I get great care. But I don’t know why, for some reason my Remicade infusions are subsidized by the drug company. And I know that’s not the same for everybody. I don’t know why mine is.
Lauren: It’s certain medications … they have different agreements, I think, with various insurance companies. But it’s great because it means that you get that covered.
Dibs: I am getting these infusions. They give me a credit card that gets $20,000 a year put on it. Just for that … not for, like, to buy shoes!
Lauren: They’re giving $20,000 to cover it. So that’s where they’re just paying themselves back.
Dibs: Right. I don’t understand that. I mean, maybe I’m put in some sort of research thing?
Lauren: No, I think you’d know that. You’d have to sign your rights away if that were the case.
Dibs: Do I ever read any of that stuff? I have no idea.
Lauren: We’re given so many things to read, and how are we to be expected to take everything in when we have more and more complicated health issues.
Dibs: They send me a thing in the mail, with writing about this big. Have I ever read any of it? No, I’m just grateful that I don’t have to pay anything for these.
These infusions are crazy expensive. And I know that not everybody gets them for free.
I’m getting them … not for free, because I pay, I’ll just say, right now my insurance is $950 a month.
Lauren: Oh, my goodness.
Dibs: But here’s the thing. I figured out if I did any other plan, I would be spending the same amount, but I would be owing everybody. And I didn’t want to get in trouble with that. So better to have a monthly payment upfront. And then everything’s taken care of. My medicine is very cheap because of that. I pay, literally, like $5 a month for my methotrexate, and I don’t pay for the Remicade infusions. Again, I don’t know why and I’m not going to ask anybody because I don’t want to know!
Lauren: Just accept it. And move on!
Dibs: I know. So I have had a good experience in that sense. I’ve had a bad experience in the sense of — and I’m sure a lot of people can relate to this — it takes forever to get relief. I don’t know if that happens with you, but by the time you get diagnosed or you get an MRI or you get this and that … even this neck thing I just went through, this disc thing … it took 6 or 7 weeks for me to get relief, and I was in level 10 pain.
Lauren: Because you had to be tested for various things before anyone would medicate you?
Dibs: No, it took that long to get the appointment, to get the MRI, get the results back, then go to the pain doctor. Then by the time they could schedule me in for the shots, you’re talking 6 to 7 weeks of level 10 pain.
Lauren: Nobody should have to live like that.
Dibs: No one should. But people are doing that all the time.
Lauren: I know people with insulin … the way they eke out medications and stuff …
Dibs: Right. So I think that’s been my experience. That I’m getting great care on the one hand.
But I think that the system, obviously, is not helping everybody equally for sure.
Lauren: And for what you’re paying … you should be getting seen right away, too. You should be priority, right? But then it’s also. like … okay, there are all these other people waiting for appointments. Seeing a specialist, I think, is the hardest thing. You always have to wait months. Like, I know I have to make my dermatologist and OB appointments several months to a year in advance.
Dibs: Right. So what happens if you’re in excruciating pain at the moment — which is what just happened to me? Oh, so I didn’t even include … getting the shots approved by your insurance company. I’m paying $950 a month. You better approve that and you’d better do it in 10 minutes! But it doesn’t work like that.
Lauren: Because everything’s a pile of paperwork, and it goes through the system and takes time. That’s frustrating.
Dibs: Yeah. So I’ve had good and bad. I feel like I have found a really good rheumatologist. And I’m so grateful for that. But at the same time, I’m broke. I mean, right off the bat, you’ve got to find $1,000 a month to make sure you can walk. That’s pretty upsetting. It’s hard to get ahead in life when that’s happening. So I feel for people, because not everybody has that money.
It’s so heartbreaking to me, honestly. I feel very grateful, and I’m knocking on wood right now.
Lauren: I’m wondering, are there ways in which you could see the health system improving — that are actionable? It’s, again, another huge question! We were just talking about how we’re going to start lobbying people!
Dibs: Now I’m an insurance expert! Do I believe in Medicare for all, is that the question basically?
Lauren: Well, not necessarily. Like, are there little tweaks that you could see that different practices could make, or insurance companies could make that would make healthcare more accessible or easier for everyone?
Dibs: I mean, it just seems like such a huge deal. It’s a huge undertaking. I will say this, my girlfriend lives in England. And I see her health care system.
Lauren: She’s on the NHS, which is all subsidized by the government.
Dibs: Yeah, but it’s also terrible.
Lauren: It’s terrible, but it’s free.
Dibs: But you know what, though, to get an appointment, she has to sit on the phone all morning, and keep calling, because the line’s busy. And then she had a little surgery on her lip or something. And they killed the nerve, and now she can’t feel it. It’s not the same care as here. They don’t get mental health care there.
She wanted to go see a therapist; they give you three appointments and then they’re, like, okay, you’re done.
It’s not good.
Lauren: I wonder if even here an actionable solution is private practices, for example. Just being able to say, when they’re making appointments, “On a scale of one to 10, how urgent is this?” Just asking that question and being able to prioritize people who say it’s urgent. Of course, there would be people who would take advantage of that. There are people who take advantage of all different things.
Dibs: I will say, I did try that thing … my insurance company has, like if you have a cold …
Lauren: Oh yeah, tele-medicine.
Dibs: I love that. That was really good!
Lauren: So that’s already an improvement that’s happening.
Dibs: Yeah. So I like that a lot. Because, what … you have to wait to get into the doctor’s appointment, go show up, so that they can prescribe you …
Lauren: Antibiotics, or Tylenol!
Dibs: I mean, seriously. I’m trying to think if there’s anything else … I have a friend from New York whose husband is a doctor on Long Island, and he doesn’t take insurance. He is doing a la carte.
Lauren: I think more and more doctors are doing that.
Dibs: Yeah. It’s interesting.
Lauren: I think part of it is related to burnout with the system, because they’re only allowed to spend 15 minutes with their patients, and then they don’t really get to properly treat things because they’re not spending enough time getting to the bottom of it. But the other part of it is, why get caught up in a system? I’m seeing more and more, particularly in the integrative medicine and functional medicine spaces … none of that’s covered by insurance, because a lot of the treatments they prescribe are, at the very least, considered by the medical industry to be experimental or “alternative”, which is definitely not always the case. But, I see people saying, “Well, what if we just charged people a couple thousand bucks a year and they knew they had access to our services?” I think it makes sense, if people can afford it. It’s just, what’s your baseline then? And are you going to be flexible for people who will have trouble paying you when they’re also paying for health insurance? But it’s part of a revolution that is happening in small ways.
Dibs: I think so.
Something drastic has to happen. It’s just not okay.
None of it is okay. You brought up a point about the doctor seeing you for 15 minutes. That really bothers me a lot. But I will say my rheumatologist … I know everything about him. He knows everything about me.
Lauren: Same with my integrative endo.
Dibs: I mean, that is huge, and we need more of that, for sure. Especially when you have a chronic illness. You have to feel like they really care about you and really know what you’re going through.
Lauren: And give a damn.
Dibs: For sure.
Lauren: And part of that is getting to know people and really finding out who they are, so that you can treat them not just with medicine, but also with kindness, right?
Dibs: That bedside manner thing is a big deal. It’s a huge thing. I love that he spends so much time with me.
Lauren: That’s really great. You’re very lucky hat you found him.
Dibs: His name is Gary Feldman, MD, Pacific Arthritis in Los Angeles.
Lauren: So you travel to LA to see him.
Dibs: I do.
Because when you find someone you like, it’s worth it to me to drive two hours every eight weeks to see him.
Lauren: That’s not too bad.
Dibs: No. For sure.
Lauren: So I like to wrap up my interviews with some Top Three Lists — as a way to make it fun! I know that you’ve obviously made lifestyle changes, and stuff. What are your cheats? What are your top three things that give you ultimate joy that you’re not willing to compromise. Maybe they look like a cheat? Maybe they look like a guilty pleasure or an indulgence? Are there top three things that you won’t give up, or that make you feel great when you’re having a flare? It’s kind of a multi-faceted question, but really, what are your three favorite things?
Dibs: My dogs.
Lauren: Okay. But that’s huge because we talk a lot about pets really helping relieve a lot of the emotional stress of dealing with these illnesses.
Dibs: Definitely. They get me out of the house. That’s important … when you don’t want to move and they need you to. I think it helps with depression. No question.
Lauren: And certainly depression can be its own diagnosis, or very often circumstantial when it comes to these chronic illnesses.
Dibs: And I think that it keeps me moving because I have to walk them, I don’t have a yard that they can just run around in.
Lauren: It’s good that you don’t because it gets you out.
Dibs: Yeah. What else? My dogs. I like to cook. Did you see my cake?
Lauren: No, I didn’t see your cake!
Dibs: I made a couple-layer vanilla cake yesterday.
Lauren: I’m glad I didn’t see it!
Dibs: Well, I didn’t do a very good job. Here’s the thing, for RA there’s been a lot of studies done. The only one that I can find from doing my articles that shows the one food … everyone’s like, ‘Oh, take turmeric, do this, do that!’ From what I’ve written, there’s no scientific proof … nothing’s going to cure RA right now. There’s no cure, food-wise.
But there’s the one study, that they say: You need to stay away from sugar. For inflammation.
Lauren: So do you try to reduce sugar in your daily life?
Dibs: Yeah, I do. Am I successful? No, I just made a cake yesterday!
Lauren: It’s also moderation, isn’t it? It’s not like you just cold turkey quit everything. But it sounds like one of the things that gives you joy is having a cake once in a while. And damn straight.
Dibs: Yeah. I like food. And that’s something that’s important to me. Am I gonna live on a keto diet? Probably not. Maybe I should.
Lauren: Well, how you live your life is your choice, too.
Dibs: Yeah. I said the gym before, I’m trying to think if there’s anything else … but the gym is really important to me. Again for mental, even if I just show up and I can’t do much; I’m not very flexible and there’s a lot of things I can’t do. Just showing up there every day is just really good for everything, I think. Mind, body, everything.
Lauren: That’s really great.
Dibs: Is that what you were asking?
Lauren: Yeah, they’re things that give you joy and that’s important.
Dibs: What else gives me joy? Anything else? What’s wrong with me? (laughs) What are yours?
Lauren: I’ve never thought about what mine are!
Dibs: Has anyone asked you?
Lauren: No. But definitely my cat’s one of them. And having my parents nearby so I can call them and be a big baby.
Dibs: That’s awesome.
Lauren: Like, just having the people you can be a big baby with.
Dibs: Oh, I live with my mom, by the way.
Lauren: So there you go! Someone you can be a big baby with!
Dibs: My dad passed away a few years ago, and I was going back and forth from LA to the desert so much. And I was just like, why am I? I’m just gonna move in and help out.
Lauren: And it gives you joy to be around her …
Dibs: It really does. I mean, I spent most of my life living in different cities from my parents.
Lauren: I’m the exact same.
Dibs: It’s a beautiful thing.
Lauren: It’s so nice when you actually become an adult, see them as adults, see them as friends. And you’re able to share space with them in a different way. But also, when I threw my back out a couple of weeks ago, I was able to call my mom in total tears. And she came over and spent a couple of days and tucked me into bed.
Dibs: That’s awesome. I love that.
Lauren: I think that’s really important. It’s having those relationships, whether they’re parental or otherwise, right, that make a huge difference in how you’re able to take care of yourself.
Dibs: No question.
You’ve gotta have somebody that gets it and takes care of you.
There’s no question about it.
Lauren: Well, that leads us into your Top Three Tips … what you would recommend for someone who suspects they might have something off? Or they’re living with an invisible illness? Would you say, get a dog, get a pet of some sort?
Dibs: Yeah, get a dog. I would say, keep moving. That is crucial. It’s so easy to say, I can’t do things. And then next thing you know, you’re a shut-in. And then it gets worse and worse. You isolate. It’s so important for your body to move, even if you have RA … moving in some way.
Lauren: Stretching or something.
Dibs: Whatever you can figure out, and whenever you can. When you’re feeling good, that’s the time to do it. Because it’s a snowball effect.
Lauren: Having someone that cares about you … that’s also about communicating, right. Getting what you need. And not only being there for them as well, but also being able to be real with them.
Dibs: And I think also there is a lot of fear in some of these groups I’m in. You’ve got to tune that out that, because
everybody’s experience is different. My experience with RA is completely different from everybody else’s. There’s some people that are doing way worse than I am. There are people who are doing better than I am. And there’s gonna be a lot of negativity in some of those things.
Lauren: One of my former guests calls it “symptom porn”. She is also one of my best friends!
Dibs: Yeah, totally. That is so crucial.
Lauren: You do have to learn to tune that out. But it’s the same thing as not turning to Dr. Google and not going down the Web MD tunnel.
Dibs: I definitely think there is strength in the community. It’s good to have people who understand what you’re going through.
But you can get into a real dark hole. And I don’t think that’s good for anybody.
Lauren: Yeah, you’ve got to get out and be positive.
Dibs: As much as possible.
Lauren: Well, Dibs, where can our listeners find you if they want to follow your work. Do you have a website that they can go to? Obviously we’ll link to your articles.
Dibs: You can follow me on Twitter @IGotDibsBaer. And then I have an Instagram account that is really immature … it’s Dibsstick, like dipstick … which I need to change to my real name. And I should have a website because I’m a writer, and I don’t. I really need one. But then, check out my book.
Lauren: Has that been released?
Dibs: October 1 (2019). Lady Tigers in the Concrete Jungle. It’s about a girls’ softball team in the Bronx. Very uplifting, very inspiring.
Lauren: It sounds A League of their Own.
Dibs: It is, actually. It’s a cool book.
It’s about not letting your past dictate your future, really.
Lauren: Which is so relevant to all of us in this community.
Dibs: It is, that there’s always hope. It’s hard, sometimes … very, very difficult. But things that happen that are bad don’t have to destroy your life, necessarily. So it does kind of tie in a little bit.
Lauren: Yeah, and I think that wraps us up really nicely.
Dibs: Okay, good.
Lauren: Well, Dibs, thank you so much for joining us. It’s been an absolute honor.
Dibs: Thank you for having me. It’s been a pleasure.