Rosalind Joffe, author of Women, Work, And Autoimmune Disease, talks multiple sclerosis, ulcerative colitis, and finding work and purpose with chronic illness.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
I have a few quick notes before we get started:
I know I’m starting to sound like a broken record, but I’m still behind on transcripts. But! Today while I was editing this episode I managed to sit upright at the table for 2 hours without pain. And since neck pain is the whole reason I’m behind on transcripts in the first place, I think this means I’ll be able to make a serious dent this week.
Speaking of podcast editing, the video chat program threw a couple tantrums during this episode that created funny pauses. I’ve tried to edit them all out but if you notice a jump or a pause, I promise you didn’t miss anything. And once again, thank you for bearing with me while I learn all about sound editing.
Today I’m talking to Rosalind Joffe about multiple sclerosis, ulcerative colitis, and finding purpose and even working while managing chronic illness. Rosalind actually wrote a book about this very topic called Women, Work and Autoimmune Disease that draws on her own experiences and her experience working as a chronic illness coach.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: I like to start by asking people about their health as a kid. Were you healthy when you were younger?
Rosalind: What a great question. I was healthy. I definitely was healthy and I had a brother who wasn’t, so I’m very aware of the difference – he had asthma and he would get sick and didn’t get better. But I was a healthy child.
Brianne: Yeah, active and not thinking about it basically, right? That’s what it means.
Rosalind: Oh no, never. The one thing that did happen and shaped me for many years was, I had stomach aches in middle school and it was a time when I was having emotional problems, you know, struggling with friends. I even get that part confused…no, actually I think this was even earlier. This was when I was in elementary school, so there’s nothing going on. Basically my mother took me to the doctor and he said, well… whether he said it or whether I dreamt this or my mother said it, but basically, ‘it’s in your head, there’s nothing wrong with you.’ That shaped my relationship to physicians, to healthcare, for a really long time until… and I’ll tell you, that’s part of the story later on. But yes… I did not want to go someplace where I wasn’t believed, which informed those first few years of getting a diagnosis.
Brianne: I believe it. It’s powerful, that feeling of thinking that you’re going to an expert who isn’t going to listen to you, it can really shape…
Rosalind: Especially when you’re eight. Now I’m realizing, I was eight years old. And it was only later that I realized.
Brianne: Yeah, of course. Of course. So from there it sounds like things were rolling along pretty healthily.
Rosalind: Yes. In my early twenties I developed back pain, and that’s the first thing…. I had been a dancer and I was almost a performer, I was a very serious ballet dancer. So I had been very physical, and doing a lot of things, but I was now a dark room assistant, that was my major in college, and standing on my feet sent me into spasms. That was the first real setback. I still didn’t go to doctors. I remember trying acupuncture, different things… but that was the first health issue that I had in my early twenties.
Brianne: And spasms in your back?
Rosalind: My back, my neck. It was quite severe. And to this day … there’s a genetic component within my family. I had no idea what to do with it, any of it. That really had nothing to do with what happened later. So my story is that when I was 28 years old, I had been dating my husband, I knew him for a month, and I developed urinary infections. I never had had that. And then, just around the time… I guess six months later, I got numbness in a finger.
Brianne: In one finger?
Rosalind: One finger. And my husband was a medical student.
Brianne: Oh! That’s convenient, maybe.
Rosalind: Well, convenient is an understatement, but someone who didn’t like doctors… but that was really good for me because he was an unusual medical student in my mind, but also, it itched. So he immediately hooked me up and got me to get an MRI, so things went on like this and I had numbness and we didn’t know what was going on. Then we got married a year later, year and a half later. And on our honeymoon I developed numbness throughout my entire body, it was spreading.
Brianne: Okay. And that would be really jarring, if it had just been in a finger basically for quite awhile.
Rosalind: It had just been the finger and going down the finger, and now it was going throughout my body. We got back and started doing tests and nothing in those days… they didn’t have good ways of figuring out what was going on. They were no MRIs and the prognosis were all bad things, worse than what the diagnosis eventually was. Then it’s middle of August, Jake has just started his internship, right after we moved, so he is completely wiped out. We’re out on a really hot summer day in August, taking a run. I didn’t slow down one bit. We used to play racquetball, I ran, I danced… we’re out taking a run and I stumbled and fell to the ground and as I’m starting to stand up I realized that everything was… the world was getting a little darker. I also didn’t have any energy. My legs were really dragging and my arms would move but my legs weren’t… I limped home. Literally, he practically carried me over the threshold. My legs just weren’t working. At that point, doctors and interns figured out it was MS. It was process of elimination… I was bed ridden and became literally blind in one eye, the left eye. Bedridden for a couple of months and now we had this diagnosis, and I remember at the time I was seeing a family practitioner, pretty alternative guy. I knew him before I met my husband and he told me, ‘Oh, it’s probably not MS, and don’t let yourself go down that rabbit hole. You’re going to be fine.’ I had my husband, who I trusted and still do more than anybody else…but I still found myself thinking, do people believe me?
Brianne: Yeah. And how do I… what’s the proof required, almost?
Rosalind: And there is proof now. Though, there are people who have all of the symptoms and it still doesn’t show on an MRI. For me, I went back to work, tried to go back to my life as I assumed I’d go back to my life as I’d known it. There was no information out there around any of this.
Brianne: Were there any… was there a treatment protocol that you were following?
Rosalind: The treatment that was out there was prednisone. It was the only one. Heavy duty steroids… I fortunately – Jake got me in to see a great neurologist who said to me, ‘look, here’s the good news. You are learning what most people don’t get to learn until they’re quite old. That your body is vulnerable and that things happen. So go out and live your life and don’t forget to smell the roses.’ I loved him and he did not want to put me on prednisone. He said ‘this is your first exacerbation, prednisone is a pretty heavy duty drug. Let’s wait to see what happens.’ I did get better. I got fully better for six months and then I had a flare again. But my flares from then on were relatively mild.
Brianne: And when you say it got better, did all of your symptoms clear up or did some stuff stick around?
Rosalind: All of them. My left finger never got better. Okay. Other than that… the urinary infections continued, but nothing else for about six to eight months. So in the fall and the spring, I’d get sick. And then that spring I had a flare, my leg was numb. It was always numbness. I was at that point… I worked as a photographer and with a lot of video equipment…so I would get these periodic flares and then get better. Symptoms would recede and they would come out of nowhere. And still my doctor did not want to put me on a medication because I was getting better each time. And he said ‘hold this, this is a heavy duty one.’
Brianne: Like let’s save it, for when things are more…
Rosalind: Given what happened to me later on, I was very happy looking back because it is a toxic drug. Eventually I started changing jobs. I needed to, I couldn’t do that physical work because when I wasn’t well, I wasn’t reliable for maybe a month, two months where I couldn’t feel. I dropped a camera one day. Different things would happen. I started making these switchback career turns … all in that same career path, becoming a producer, and then I was teaching multimedia at a university. Along the way I had a child, and that went fine the first time. The second time it didn’t go as well, only in that I lost a lot of weight …at that point I had severe back pain all the time. I think my body was just overloaded. So those were very rough years. And then when I turned 40, I developed another autoimmune disease. Now mind you, at this point, MS, still, you couldn’t see it unless they used a diagnostic tool…and they didn’t try it again with me. I forget what it was called, but it wasn’t an MRI, and they would inject dye. But we never bothered because I had all these symptoms. I still was living with something where you didn’t have a way to know that that’s what it was. And then I happened to get… I was having some trouble with my bowels and went to see a gastroenterologist who said, ‘oh by the way, you’ve got ulcerative colitis’.
Brianne: And this was about 12 years after…?
Rosalind: It was just about 12 years, I turned 40. Yeah. So now I’m in my early forties. I continued teaching for another year. I had two young children, a great marriage, and I was totally bedridden from the ulcerative colitis. It was diagnosed, in those days, first as crohn’s, cause that’s what it looked like. So I was again, dealing with MS, we hadn’t done an MRI ever yet, they weren’t really out. And now I had a disease which was labeled crohn’s, which is not curable. There’s no way, you just medicate it.
Brianne: Yeah. And also with prednisone, a lot of the time.
Rosalind: Yes. So now I was on prednisone all the time and I would just bounce from 20 to 80, back and forth. I could never get off it. And we were doing all of these other immunotherapy drugs and I had to stop work altogether. I literally would just… my bowels would just shoot out of me. I had no control because I also had had nerve damage in that whole area. We knew that because at that point, we’d had an MRI. It showed up and you could see there was lots of damage. So I was a mess. Mostly in bed, a lot. I was lucky, I applied for social security disability. I wanted to keep earning some money. I was so bad off that I got it the first time around, but people don’t usually get it that easy.
Brianne: That’s true, that’s what I know about it is a lot of people end up needing an advocate or a lawyer to go through two, three, four rounds of applications.
Rosalind: I didn’t need it. Which was a blessing because I would never have had the… I felt guilty taking it on some levels. For me… we had lost my income, which had been significant. But I still felt guilty taking it. I also didn’t have the energy to have applied again, and that stayed with me, as the years went on. But that check, actually, was really important because I got it based upon my earning. I felt I couldn’t be much of a mother. I didn’t show up at soccer games… at the time I couldn’t do the carpools, anything that was physical. And there were numerous, really embarrassing for my kids, episodes where mom would just shit her pants.
Brianne: Right. Even if it’s something that you yourself can kind of decide to get used to, however that works, kids…I can only imagine who are already so, so sensitive about everything that their parents do, just want everything to be normal.
Rosalind: Everything to be normal.
Brianne: Yeah. That would be a really tough layer.
Rosalind: It is. But you know what? It was very helpful, because it also… what I did was create our lives, normalize them. I tried to normalize everything. So with all of this going on, we got a dog, who happened to pee all over the house. Everything we could do… we were like everyone else so when my kids would get upset that mom couldn’t do this or that, I would talk about someone else, and look what that child’s, you know…she’s got two moms and no one else has two moms in. Can you imagine what your friend Chrissy feels about that or the other one with this, and you know, a disabled sibling. I would just say different things… constantly trying to do that would help me. It made me normalize this.
Brianne: Yeah. This idea of the normal family is made up. It’s made up and we don’t have to try to fit exactly into it.
Rosalind: No. And everyone, most people, not everyone, but most people have challenges that you can’t see. So we would talk about that a lot. I really was aware that it helped me. I couldn’t get bummed out, I couldn’t get depressed. I could get bummed out, but I couldn’t be depressed. I had to be authentic with them and it wasn’t a word people used at that time, but I did. This was not something that could be ignored. And at the same time, I missed work desperately. I didn’t realize how much I loved work until I couldn’t work. I never had envisioned myself as a stay at home mom, I didn’t want it. I didn’t have one myself and it was never what I wanted. So I was doing a lot of volunteer work, mostly in the social justice world because that’s where I had been a lot of my life before kids.
Brianne: What was, as that interim… so for volunteering, what did that look like? As a kind of transitional activity, what were you able to do and how did you, you know…
Rosalind: Well that’s the interesting thing. How did I figure it out? Well, I was always someone whereas if someone said they need this, I would show up and do it. And I always had a specific feeling of, you should do things. So first I got involved through… I’m Jewish so through all the social activism in certain social activists kinds of work, like Jewish issues and working in inner city with inner city, not Black Jewish, but working in the Black community. Why I allowed myself to do it was, I realized I could. That if I couldn’t show up, I can just cancel. But it wasn’t like when I was teaching college, if I couldn’t show up, the classes were canceled.
Brianne: Right. The impact was lower.
Rosalind: Yes, the impact. And that felt good. And I also didn’t have to do a lot. I was very sick at this point, so I could sign up for as much as I wanted to. And then I started getting involved with my kids’ schools because I felt one should, and it engaged me. I got involved once again in social justice issues, but also PTA, just because it was a way to be involved and do. I thought I had control over my schedule. And what I started to realize was, I was really doing a lot more than I thought I could do… going to meetings downtown. I remember lobbying the governor for something and I literally shit all over myself and I went to the bathroom and I washed off my pants and I went back out. My pants were wet, but no one noticed. And that’s what I did. I found that I could do things. So the question is what do I go back and do? I couldn’t go back if I was going to work again. I couldn’t go back to what I was doing, it was way too physical. I had been a classroom teacher along the way and I loved that. Everything I had done, it had been just too physical. So I sort of stumbled into things with my advocacy work, not advocacy, but my activism work. I had learned about mediations, and I’d always wanted to be a lawyer as an advocate. So I became a mediator and I started working for friends who… a couple of friends did organizational work, organizational development was in those days. They would hire me because I could, I had certain talents, I started hobbling things together and landed eventually sort of making myself up… I found the mediation really bumping up against things I didn’t want to bump up against. I didn’t have the right credentials and I didn’t want that, so I made myself up because people would ask me to coach. It wasn’t something that people did, but I would be working with senior leaders in these organizational development… they would ask me if I could help them and I knew nothing about this. I knew nothing about being a leader. I knew about business because of some of the work I had done when I was a photographer and where I worked and how. I was just always a quick study. Along the way, I ended up getting really sick and right about this time when I was thinking, what should I do, and I had the mediation training and thinking maybe I’ll start developing my own business. I had surgery because my feeling at that point was, even though they still thought it was crohn’s, I needed to get that colon out and I was desperate. I had gotten really sick and part of why I didn’t go back for another degree was, A, the money. I didn’t wanna spend money on myself and B, I didn’t even have the energy, I was just getting sicker. So I pushed, we had the colon out and they did realize, oh, this is ulcerative colitis…
Brianne: So it was upon removal that they actually changed the diagnosis, which is interesting.
Rosalind: Yes. My gastroenterologist still didn’t believe it, still argued the case. I felt very gratified and I opted not to have a resection because I knew I had a lot of nerve damage. So I just said I’m going to live with the bag, I can live with it as it is. It was hard. It took a lot of getting used to, but it got better. At that point, I had a partner, we were working together for awhile and I’m building this business of coaching organizational leadership and a lot of conflict mediation kinds of stuff and we also …now we’re doing an MRI every year and the MS was getting worse. So around that time I also started taking an MS medication and that was a turning point because I responded very well to that medication. Nothing, no medication ever helped the ulcerative colitis, only taking that colon out. It was really bad. But the MS was never obviously that aggressive. There had been damage already. We knew that there was damage that wasn’t going to repair, but I started taking medication and I would say it took about 15 years of being on medication, but I went into remission forever. So that’s been eight years now since I’ve been completely in remission, I’m fine. It’s been 10 years. No MS flares of any kind, which I was living with up until about 10 years ago.
Brianne: Okay. Wow. And so it had been… it sounds like very variable as a disease for you. So, relapsing, remitting…
Rosalind: Yes, it was relapsing, remitting, but I didn’t get new symptoms. But then I was developing other problems, so…
Brianne: You had something else to focus on it sounds like.
Rosalind: Significant problems in this eye, that same eye with the optic neuritis. In my early fifties, I started having a lot of issues and eventually it was glaucoma and I had really hard to treat glaucoma. I’ve had multiple surgeries and lots of medication with that. The bladder, I got to a point where… I was just so sick. I developed a norovirus and there was just nothing they could do. Luckily I found another option, the stimulator, and that made a difference. So then I stopped getting bladder infections all the time because that was really dangerous. I would get very, very ill with that. And then I’ve had a lot of mobility problems.
Brianne: Yeah. It’s like there’s so many different kind of tracks that things were happening on while you’re also parenting and married (I just tried to combine those words) and then volunteering and then building a business. I know we’re still also catching up to present, but what was pacing like at that time? What did you discover that you needed to do in order to kind of keep going? Did you become more responsive to when your body needed to rest, or what does that look like for you? Or what did that look like for you?
Rosalind: Pacing has always been a challenge. My husband would say that when I slowed down, it was what most people operated at. I mean, I just know myself. I learned early on that that idea of normalizing was critical to me. It meant being the one who hosted Thanksgiving, who hosted all of the events in our house, you know, Passover, Rosh Hashana. I did all of that and I loved to cook. So in the early days I would just do it all exhausted. And what I found as I got older and wiser is, it wasn’t smart. I learned to give more stuff away to other people to do. And I tried to find a balance the same way I had with my work. So the idea was, how much can I do. I know what I want to get done. I want to do this thing. So what’s it gonna take to make it happen? I really want to have this New Year’s Eve party in my house. What do I have to do – it might not be natural to me, but to make it happen. I made spreadsheets for all the meals and I would plan out to the detail and I’d start cooking months in advance. So that helped, and in terms of my kids, but there’s always, in terms of their schedules and what they needed, there’s always stuff that comes up. That’s the hardest part of all of it is living with this and trying not to take more on that I could then I could do. What I finally got to, I would say only in the last 10 years, is realizing that life is about living with disappointment, and I don’t have to be upset with myself. To be upset with the feeling and the feeling about the feelings, and that I don’t have to be upset that I thought I could do it and I overcommitted, because there’s a lot of times that I just don’t know.
Brianne: Yeah, definitely. Yeah. And also, I’m interested, people do talk about this sometimes – the way that our own emotions make things worse. Like our expectations. So I’m disappointed and now I’m upset that that has happened and it can so easily spiral into like, I hate that my body is doing this to me and ruining every part of my life. It’s so easy to go from this one moment to this really terrible conclusion.
Rosalind: And the other piece of it is too, as you said, is that a lot of us do. I did it, but not anymore. But I did it for a long time and I hear it in my clients a lot. When you’re… when you took on too much and you have to disappoint someone, yourself or someone else, you’re angry at yourself for taking on too much. So you’re now beating yourself up and that’s where you get stuck. When I’m just with the disappointment in the pain, I can live with that. I realized that it’s really important to know. That’s the whole notion of being in the moment. And we’re not thinking about just what we’re experiencing right now…. and when you, you know, given the lives we lead, it’s so tricky because it’s also, a lot of times it’s… When I got sick last week, with the stomach virus…you get better. And there’s no question, I can’t get out of bed. The second day I would question it, but then I knew, no, I can’t. When you’re sick with any of these kinds of things… When I was running fevers, one of the things I liked about the ulcerative colitis was I had fevers, I was shitting my brains out. No one could deny that. You know when you’re fatigued. you’re in pain… It’s much harder.
Brianne: Yeah, when there’s no external signs of that happening, so you end up kind of playing this game with yourself of ‘is it really happening? Is it really bad enough that I need to respond to it? Is it, is it, is it?’ Yeah.
Rosalind: Is it really happening? And I push myself a little bit more and then when you can’t, then you’re dealing with everyone else’s response to ‘can’t you push yourself a little bit more?’ And your own response to it as well. That’s when it gets just so…
Brianne: Yeah. That’s a very, like, knotty thing. Okay. So that’s kind of looking at then, and also I’m sure lots of things that you’ve learned into the present. So, you decide to start a business. Was that around the same time that you had started the new MS medication?
Rosalind: No, the MS medication started right after the ulcerative colitis, after the surgery. Well, I had several surgeries. It was a year of surgeries. And then I happened to see my neurologist because I was having trouble walking still. I never had motor problems, I really don’t have motor problems, but there was nerve damage and I couldn’t feel, whatever it was. I saw my neurologist who I hadn’t seen in years because this was taking up… so he said, let’s do another MRI. We saw how far it had progressed and that there was a lot of… and he put me on the medication, I was 46 at that time. The first one worked and then I had sight reaction. When that happened, I wasn’t relapsing and remitting, I was just always in a flare. And I hadn’t even realized it. I was so sick.
Brianne: It kind of snuck up on you.
Rosalind: Now we started to see the pattern that I could get better with the medication, which had not been the case with ulcerative colitis.
Brianne: Right, right. There wasn’t medication or there wasn’t medication that you responded to.
Rosalind: I didn’t respond to anything. I was just too… it was intractable. But this, I did respond. I wasn’t fine, I still had a chronic illness, it would flare, but I could live with that.
Brianne: Yeah.
Rosalind: It wasn’t that much worse. My baseline stayed the same.
Brianne: Yeah. Gotcha. Gotcha.
Rosalind: That started happening and then… I just was going down.
Brianne: Yeah. Okay, okay. So then you are… as you’re starting the business with a partner, what kind of a time commitment was that? Since it can be a lot of one, I know.
Rosalind: Yeah. I remember at one point… so now my kids are, one’s in middle school. One’s in high school. So I was probably putting in, in the beginning, just 20 to 25 hours.
Brianne: Okay. And that was manageable.
Rosalind: It was manageable, yeah. It was definitely manageable. And we’re running the business as mediators and doing a little bit of other work, but then we … I started doing my own work with people, I would say it was still 20 to 25 hours a week. Within five years of that, and I started seeing I could really do organizational development. I’d taken courses and I had done some training, a fair amount of training in it, and I was starting to see that as a business. I never wanted to develop my own business, so I had to learn how to build my own business and I did, I set out to do that and that’s when things kicked in. My kids were now away at school and I was working 60 hours a week at that point and loving it.
Brianne: And loving it.
Rosalind: All I was doing was work, building the business, learning my craft, and loving it.
Brianne: And did you have to travel very much for this, just even commuting? Were you going to meetings? Was it mostly at home?
Rosalind: I did. I did actually. Whereas back when I had the ulcerative colitis, I had my first job back at work, was at an inner city school and that was a 30 minute ride…. I was too exhausted. Actually, I had a consulting job with state government that was an hour each way. I could do it by that point.
Brianne: That was fine. Okay.
Rosalind: I wasn’t on steroids, and I had energy at that point. I was really, that was the healthiest I had ever been.
Brianne: I want to acknowledge just as an extra point for people who might be listening who also may have gotten sick in their twenties… this was, this was in your forties I think you said, right?
Rosalind: Fifties.
Brianne: Fifties, right! So things can change.
Rosalind: 40 they found the ulcerative colitis, 45 the colon came out. I’m now really having flares, but still really… I remember on my 50th birthday I said, ‘Oh, I haven’t been this healthy in 25 years.’ And I felt like I’d died and gone to heaven, like such a lucky person. So I developed the business and I was earning money. Good money. And I had several clients with illness. Coaching clients… and coaching was still a very new thing and I realized that’s what I wanted to do. One thing that I did … when I started working again, I was this mediation coordinator in schools. When I went back and got the first paid job, so this is before the colon is out and I realized I had to do something that I really cared about. I’d liked everything I’d done before, but it wasn’t my passion, but working is and doing anything that had to do with social justice really mattered to me and that got me out of bed, even when I was so sick, and I knew that that had to be the case.
Brianne: Yeah.
Rosalind: It switched and I developed… I realized there’s this whole need for somebody to help people – to work with people, not help, but work with people who had chronic illness in the workforce, because I knew it wasn’t something you talked about.
Brianne: Right.
Rosalind: I had no help. So it was around 2000 … It wasn’t long after 9/11, I remember. I decided to switch the business focus and I started working. I still had some other clients, but it was mostly… that was the direction, working with people with chronic illness. And that’s what I’ve been doing since. And then about seven or eight years of good health started declining. In the last 10 years it’s been a lot rougher.
Brianne: They’ve been harder.
Rosalind: Yeah. But my baseline… right now I’m in a very – today’s a healthy day and I’ve had bad days. I used to have ongoing glaucoma, but mostly I’m doing quite well.
Brianne: Yeah. And that’s over almost … so it sounds like if it’s since 2001 that’s now approaching 20 years, which is nuts also to me from knowing how time works. So for 20 years you’ve been focused on the coaching professionally, and then does that allow you… you must be able to kind of try to adapt based on what your body is doing if you’ve had some ups and downs in that time. How is that?
Rosalind: Yeah. You know what’s really interesting about that… the way my passions outside of work and my family and friends and everything was gardening. I had tremendous gardens even when I was so sick and… cooking. And I just… whatever did happen was, I didn’t have the energy. I couldn’t do either very well. And my back never was great in the bending. So I had to give that up, but the other passion still was social justice. So three years ago I decided, well, most people retire at this age. I’m not going to retire. I am going to cut back. So I cut my business back and started getting very involved in community organizing through interfaith work. And all of a sudden I was in a situation again where I had to show up for other people. And my work, I sit at my computer, I’m either writing or I’m on the phone with a client or doing this in horrible shape. Last year I broke my ankle. It had nothing to do with anything. I just tripped. The dog pulled me and really shattered it. But I am so good at doing this stuff that when I had to wait a week for surgery, then the night before surgery, I had a client call. I hadn’t moved in a week and I could do it because I knew how to. I didn’t have to go anywhere and once again, whereas this other work, people want to come and meet with me or I couldn’t show up. When I first started doing it, it brought it all back again. Because I mean there’ve been times I’ve been sick with a urinary infection or something and I can’t go to something big that I had helped organize and it’s just, it’s just life, and so I realized… There was a reason I chose what I did without even necessarily figuring it out. This part I did, I knew when I developed my business and I developed it in this way, coaching, it mostly would be phone. … but I realized I don’t have to show up, I can do it wherever. It was rare that I had to [cancel].
Brianne: Yeah. That something is going on that would be so…
Rosalind: That my brain wasn’t working.
Brianne: Yeah. Disruptive. And I think something that strikes me about that too, is when you have brain fog or cognitive fatigue… it’s interesting because, for me at least, and I think this is true for other people and it’s kind of what I’m also hearing from you.. is that some things still work. So on days, for me for example, on days when I really can’t write, like if I sat down to write, I would just not make a sentence or would not make a sentence that I liked. I can still do this, I can fully talk to somebody, I can talk to somebody for two hours. Even if I show up in pain and tired and drained, like the way that my brain is wired, this works. Even when the other things don’t. And it’s interesting how you can find those, it feels like a loophole almost.
Rosalind: A loophole, what a great way of putting it, yeah. A way to get through it. When you show up and you’re in pain, do you find that you’re fully present though, to what’s going on and interacting with the person?
Brianne: Yeah. For me, the way that my body is, yes. In conversation and engaging in conversation. So it’s one thing to be making small talk at a networking event or something, I would say no. The discomfort will override the ability to focus on a conversation, but talking about something that is engaging for me, which health stories are, but personal stories in general are since that’s part of what I did before. I don’t even notice because sometimes I’ll get off of these calls and I’ll be like, ‘Oh wait, no, I’m really tired and my arms are buzzing today,’ but I haven’t been thinking about it while I’m in it. So it kind of, it overrides, but I’m sure everybody’s experience of that is a little bit different.
Rosalind: Well, yes. What helps it override? Many of my clients, cause we’re talking about them, they’re in rough shape, they’re in that brain fog place. I actually wrote a book when I was quite healthy and I remember thinking in these last few years, because yes, writing is just not something that’s distracting. It’s engagement. Now what I talk about is just working engaged. Because engagement, no matter what, if it engages you more than your body, you come out of your body. And there’s a downside. And the downside is, so like I’m gonna stand up right now because I’m engaged, but I forget to stand. And so the downside is that for many of us, we ignore.
Brianne: Yup.
Rosalind: I’ve had so many people I talk with say ‘I really paid for that afterwards… I did that and I paid for it.’ I never thought of it in those terms, that I paid for it. I didn’t see cause and result the same way. But that’s my body, and I’m glad I didn’t because there is something about that that is self-flagellating, you know, I paid for it versus it was a choice. So I tried playing with those different feelings, that if I do this, I probably can’t do that. The choice I’m making. But, you know, there’s still… certainly when there’s a new thing, like with the Glaucoma and finding, once again, I’ve got this, I’ve got a disease that is just… I’m on that far end of the spectrum. It’s easy to get down. To feel like I can’t keep doing this, it gets hard.
Brianne: Yeah.
Rosalind: And then I find… my husband’s really good at this. It took me 10 years to figure out how to do it, but he’ll pull me into something else that will engage me.
Brianne: Like redirect, yeah. And then, that also brings me to another question about, I’ll say self care, which is a helpful and trendy word, but it’s real. So just relating to that, over the many years of going through different health experiences, I’ll say, cause I don’t know the right word for all these tracks. What do you do? And this could be anything. What have you found that is helpful for you? Whatever that means.
Rosalind: Yeah, oh my god, there’s a huge range. So early on, I discovered… I used to bite my cuticles and I hated that and I I decided, someone said, ‘why don’t you get a manicure and they can cut your cuticles?’ So I had a manicure done and I didn’t bite my cuticles and I said, that’s something I can do about it. So I would literally drop my kids off at school, had to be at class, teaching a class and had to be there at a certain time and in between, I started having a manicure. That was one piece of self care. Looking back I would say… and just recently I realized that it’s something that matters, I’d never paid attention to how I look. I had never really spent any time on makeup or anything. I was young, you didn’t have to, but by the time I grew up, nothing at all. I started caring about how I looked and I started putting energy into clothing and different things, and only really recently did I realize why. And that was something that I could also take charge of. I didn’t like when people said, ‘Oh, you look exhausted. You look tired.’ Even though I was tired, that didn’t cheer me on.
Brianne: Right.
Rosalind: The other thing was that I really devoted myself to trying to be as healthy as I could. Did that mean eating right, sure. I mean, by then food was still something that people were talking about, but I never found that what I ate, interestingly enough with my ulcerative colitis, food was never a trigger. That was the other thing that I developed, was gastritis. I can’t believe I forgot that. That was really bad. It has been bad. But from early on I did acupuncture, I did herbals, exercise. So just keeping my body going. And then eventually it was yoga and pilates, and I had done yoga, but then yoga and now it’s pilates. But every day I had an exercise and I meditated, my whole life, my adult life, four decades. I go in and out of that, and especially now more than ever, I spend time trying to do that and having that discipline, especially when I’m finding I need it. But those things are all about what I can do for my body.
Brianne: Right.
Rosalind: And I will pursue whatever it takes. And I’ve always… and that’s how I was with the MS, getting a neurologist that I could trust. With ulcerative colitis, you know, pushing beyond what the doctor thought I should be doing. And since then with the gastritis, I will do what I have to do, take whatever medication, prescription drugs. It’s worked for me, most of all that stuff, supplements didn’t make a big difference, but I do them too. I figure I’m going to throw everything at this, always.
Brianne: Yeah, it’s like you want to stack the deck in your favor even though sometimes you can’t tell… If you’re doing five things, you don’t know that all five of those things are effective.
Rosalind: Right. Well I try, and I’m really pretty good at that, and that is important. So if I add a new supplement which my acupuncturist gave me. I give it the time and then if it doesn’t work, I stop.
Brianne: Yeah.
Rosalind: You know, I can tell with a prescription drug pretty quickly how it’s affecting me. But it is… and it’s balancing it so you can afford it. Even the out-of-pocket costs with, I’m on this medication for my bladder, which is not protocol, so I have to pay for it, and I’m fortunate I can afford it. That’s why my social justice work is on healthcare and legislation. So these things all fall in. I know how lucky I am. And I resent… Also, I’ve had incredible access and healthcare providers. So that has only made me more… part of my feelings about self care… but it does. My feeling of social justice is that I will accept that I had that access, I will try to make it that other people can, too.
Brianne: Yeah. I think even a very small thing, but speaking of the cost and access and things that help… somebody that I interviewed this past week, when they’re published, I have no idea whether this will be a person that comes out before or after you, but someone I interviewed recently was saying that at one point she went to see I think a naturopath or a functional medicine practitioner and they gave her a lot of supplements and at first she didn’t think they were helping, normal story, but she went off and found that some of them were extremely helpful for her, but her reality was that she couldn’t afford to stay on them because none of them are covered. And so she is on some prescription medication that’s covered by insurance. But there’s these things that she knows that she could be doing and I’m sure that she’s thinking about and working towards. But these are the choices that people are making with everything around caring for your body, is what can I do? What can I afford to do with my energy? What can I afford to do with my money?
Rosalind: Absolutely.
Brianne: Yeah. It’s hard for people to stack the deck in their favor, often.
Rosalind: Acupuncture, all of these things, there were times when finance was really tough. I wasn’t working or things were worse, kids were in school and I couldn’t go to acupuncture as frequently as I wanted to or any number of things. I remember doing biofeedback, there were all kinds of things I would try and if it wasn’t covered, I was a burden. And that’s what I hear all the time, ‘My family is already suffering enough, how can I spend more on me?’
Brianne: Yeah, yeah. Especially if I’m not working or I’m not bringing in the money that would pay for it is another…
Rosalind: Who will pay for it? And that’s what my clients say to me and that’s why I work with a sliding scale because I get it. On the other hand, that’s the key, is to feel that I am worth it.
Brianne: Yeah. I’m investing in myself.
Rosalind: Worth is not quite the right word. I don’t like… this is what I need to do.
Brianne: Yeah. I am choosing to care for myself.
Rosalind: Yes. And this is going to disappear and I will be able to work if I can get my body in better shape or if I can develop the skills, I will then be able to work and feel like I’m more of a contributor. More importantly, even if that doesn’t happen, that was my intention. Allowing myself… not falling into the role of victim.
Brianne: Yeah. It’s a tough line sometimes, I think.
Rosalind: Very tough line. Very. And once again, there’s not a lot of resources out there to help people. Because what this is… it does promote victimhood. You feel like it’s all being done to you.
Brianne: Yeah, and you have no control. This does tie in because you’re kind of talking off hand about clients too, what I think is my last question and then we’ll see if there’s anything else that’s still kind of out there, but I was wondering, after so long of working with so many different people who are also living with chronic illness, I guess just kind of this, I don’t know how to phrase this so that it doesn’t sound trite, but what have you learned from that? What have you learned from your clients? Or how has that impacted your own experience?
Rosalind: That’s a great question. I think what I’ve learned, and this is not self-promoting…
Brianne: That’s okay. I mean, you can self-promote if you want. I don’t mind.
Rosalind: I’m not trying to and I’m not, but I have learned how important it is to have a space that’s safe to talk through these things… not with a friend. Because it’s a way for someone who understands that world you’re living in and the dynamics of it. Cause I remember a friend of mine who is a therapist, he asked me, ‘well, do people doing this, do they have to live with chronic illness?’ And actually I worked on a project, we had to recruit coaches and I felt that it made a difference. And I said, when I was a coach, I didn’t have to know the person’s business that they do. And even now whenever my client is working, I don’t have to understand their business. What I have to understand is what this does to a person internally and what it’s like to work with the external world in that place. The less you’ve gone through it…. it’s not something you can read about. In fact, right now I’m working on this coaching engagement with a grant from the government and we’re going to hire these coaches and most of them probably won’t have illness and, given that it’s… that’s okay. But there is something about that lived experience, because this, the invisibility of this, the unpredictability and the fact that it’s chronic. It’s not going to get better. It might, but most likely that’s not what we’re sitting and waiting for when it’s a chronic illness because there’s no cure. You might go into remission for a really long time.
Brianne: Yeah.
Rosalind: If you’re living with something, and there’s no cure, and those three elements are unlike any other illness.
Brianne: Yeah. It’s such a unique experience.
Rosalind: It’s unique in that way. That’s why I think people with chronic illness, when I first started doing this work, my book is called ‘Women, Work, and Autoimmune Disease’ and I wanted it to be about chronic illness, but it was a neurology publisher that did it. For me, it doesn’t matter what it is you’re dealing with. If it’s chronic, emotional, physical, whatever part of your body it’s affecting, it pretty much comes down to those three things that just make it very… an unusual experience.
Brianne: Yeah, it is. It’s so unique and I think the piece that really strikes me is that… what I think I hear in the cultural narrative or something, we like stories where people get better. And when you first get diagnosed with a chronic illness, I think it’s very common that you think, ‘okay, now is the time when I get better’. And I also think that we, as a culture, are very kind of quick to divide things into optimistic or pessimistic. And so when you’ve got… kind of exactly what you’re talking about, like it won’t go away. And I think facing that head on in a way that isn’t meant to be fatalistic is difficult. And it’s difficult to talk about with people who don’t understand what you’re saying. Cause they want you to have hope. They want you to get better.
Rosalind: They think you’re being a debbie downer or a pity party or…. whereas no, I’m just being [inaudible]… At times over the years I would say, ‘well I’m not, I can’t really do that. I’d like to get there.’ And someone would say, ‘oh, be positive.’ I want to just strangle them. I’m not being negative. I’m being realistic. This is my reality. And it’s just crazymaking.
Brianne: Yes, it is. I was just going to say, I feel like I yearned for another word that is not about hoping to get better, but is about something that I kind of feel like you’ve done and been talking about, which is like building your life anyway, so you’re not waiting. We don’t… it’s not about waiting until the cure comes or you find the exact right combination of supplements and medication and exercise and stretching. It’s about going, like how can I move forward today?
Rosalind: I always call it thriving while living with chronic illness. It’s the challenge that we face and then I go back to that neurologist. It was a lesson I learned really early and I see that, I remember when I would watch my parents and my husband’s parents getting ill. They hadn’t dealt with this. So it was, ‘oh my god, I can’t believe that this is happening in my body.’ You know, would I have given this… I would happily have been unknowledgeable, if I could have been. That said, it’s another… I feel like it helped me then each time things got, were not so easy, helped each roadblock so that it wasn’t just blocked, that I could find that loophole, that way to get through it.
Brianne: Yeah. There’s a resilience, absolutely.
Rosalind: A resilience, a resilience. Which can go up and can go down. And I have found with resilience, there is a reality that I’m 67 and I don’t have the resilience in my body. I keep saying that and yet, you know, I do, in my body, but it’s all a little hard.
Brianne: Yeah. You’re going and it doesn’t mean that every day is easy or easier than the last, or whatever picture of health we’re supposed to be painting.
Rosalind: Right. And that ability to be resilient… it’s a little bit more worn out, but then I find that I go through periods where, huh, I’m surprised I’m doing as well as I am, so it’s nothing about this… it’s a moving target. And what have I learned? That’s why when people will contact me, I’ll say, ‘hey, I’ve got this sliding scale.’ At this point in my life, I know how helpful it is. I never had it. I wished I did. I looked for it. I couldn’t find a therapist or somebody who… I actually did find a therapist who did understand it somewhat. It wasn’t the same, she really didn’t, it wasn’t the same. And I just think, whatever it is, to find people or a place, someplace where you are in a community and it’s supportive and helpful.
Brianne: Yeah, helpful. I think one thing that’s interesting is as the Internet has evolved, you know, there are communities on Instagram and Twitter and lots of Facebook groups around any diagnosis that you can imagine. And they all have very different tenors too. You know, some of these support groups are, I would say, difficult to be in. And not because I expect everyone to be positive all the time, but they can still get toxic, versus like… I love Twitter for this. I think I actually say this on the podcast a lot. I love Twitter for this. I know a lot of people who love Instagram for this. Places where you can honestly talk about all of the good stuff too, like, and people who know what a big deal it is that you, whatever it is, you know, I did half an hour on the recumbent bike today and yesterday and I tweeted about it and a lot of people knew what a big deal that was and were responding and kind and even something, I’m going to call it small, it’s both, that makes a difference. But if I text my friends from college about it, they’ll be like, they love me and they don’t know why this matters.
Rosalind: That they don’t know why this matters, right. And you can hear that and it’s just not shared experience. It’s so important. I think the isolation of this is one of the hardest pieces. And I know that it’s different for younger people, you know, it’s just different. And it’s more okay to talk about these things.
Brianne: Yeah, yeah. I’m sure that’s something that’s changed a lot probably also because of Internet culture and, you know.
Rosalind: Yeah, a lot of things. People just talk about differences. I would talk about it and people would look at me like, what’s wrong with you that you’re talking about this? I’d get that a lot, but that’s the only way I could get through it.
Brianne: Yeah, yeah. I’m pro talking about things. Great. Okay. So, we’ve covered all of the chronological component and I think most of my questions, is there anything in your mind that we haven’t covered yet?
Rosalind: No, not that I can think of.
Brianne: That’s okay. I like to make sure because people come in with notes and ideas sometimes.
Rosalind: No, you basically asked great questions and it was a chat in that way and I love… even when we all got together in that roundtable, I love the energy. I think it’s really important. It’s really great. And I thought, I’ve got a 31 year old daughter who lives with fibromyalgia.
Brianne: Okay, with fibro, yeah.
Rosalind: It’s interesting watching her navigate the workforce.
Brianne: Yeah. I bet.
Rosalind: She’s so much smarter about her life. Some of it’s because of living with me and knowing, and it’s also just, she’s able to. It’s just a different world. We talk about that. So I’m glad for that.
Brianne: Yeah, yeah. I’m sure. And if being diagnosed with MS, is that, is that 40 years? Is that the math for you or not? I guess that wasn’t your diagnosis but your first symptoms.
Rosalind: No, yeah. First symptom was forty years ago.
Brianne: Yeah. So you’ll have seen a lot of shifts around on every possible side of it, on the medical side and the community side.
Rosalind: Right. My mother wanted me to quit work, so did my mother in law, and stay home and as my husband said, you know, live in a fishbowl and look at the world from outside of you. Because she wanted me to take care of myself. So yeah, I see things are really different. What does still strike me, because I do have some clients who really don’t have access and money, a certain level of education. And there is a real white privilege here for us. This level of interaction is primarily you know, middle class, upper middle class, well educated people. And there is a lot out there of people who really need this help.
Brianne: Right. Yeah. I mean, being able to… like coaching, being able to build a business that is entirely, basically intellectual labor. I know there’s also emotional labor, but like everything is coming from that in order to have people trust you, there are a lot of, yeah, there’s a lot of privilege in that from all of the things that you’re talking about.
Rosalind: When I did it, I couldn’t work. But still, I didn’t have to. I couldn’t… so in the end, yes, there’s all this privilege and this is an idea that there are people who really need this help.
Brianne: Yeah, yeah.
Rosalind: I get emails from them all the time. You know, they’re not even looking for resources, like they want me to tell them what they should look for. That’s the part that breaks my heart.
Brianne: Yeah. Like what is the structure where somebody who isn’t able to create a freelance career or a business based on their own skills because of their illness and because of cultural obstacles, and all of these reasons that are beyond their control, what are the options in that case? Yeah. It’s a tough question.
Rosalind: It’s very, yeah.
Brianne: But that’s a bigger conversation.
Rosalind: Yes, that’s the world as we would want it to be! Well, I really enjoyed this.
Brianne: Yeah. Thank you so much. I really appreciate it.
[guitar riff]
Thank you for listening to episode 30 of No End In Sight!
You can find Rosalind online at ciCoach.com and facebook.com/ciCoach, or you can find her on twitter @WorkWithIllness. You can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb.
I’ve got so many more stories to share with you, so make sure you subscribe on apple podcasts or stitcher or wherever you get your podcasts. And if you’ve been enjoying the show, I would be so grateful if you could share a review on apple podcasts so that other people know what to expect.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.