Disclosing MS: One Advocate’s Journey from Private to Public

Disclosing MS: One Advocate’s Journey from Private to Public

Episode 188 – Podcast Transcript

[(0:25)] Stephanie Buxhoeveden: Welcome to the Can Do MS podcast. I’m your host Stephanie Buxhoeveden. I live with MS, and I’m also an MS clinician and researcher. Joining me today is someone who brings both personal insight and professional experience to the conversation, Ken Bandler. Ken is an incredible advocate, a seasoned communications professional, and a fellow person living with MS. He’s here to share his powerful story, including when and why he chose to disclose his diagnosis and what that experience taught him. Hi, Ken. Thanks so much for joining us today.

[(0:53)]Ken Bandler: Hi, Stephanie. I’m so glad to be here.

[(0:55)] Stephanie: Well, let’s start at the beginning. Can you take us back to when you were diagnosed and what was your initial approach to disclosing the diagnosis?

[(1:03)] Ken: I was diagnosed in, uh, April, 1990. That was when I, uh, had certain the sensations in my hands, uh, feet, legs, arms, and at that time, an MS neurologist ordered up an MRI. He told me a couple days later, you have MS. And I was shocked. Uh, never had any health problems until then. And I, uh… the first thing I thought about was my aunt who was been in a wheelchair for 40 years.

[(1:38)] Stephanie: Hmm.

[(1:39)] Ken: Uh, but I listened to my neurologist. He said, this could be a mild case. You could be mild forever can, or it could change one day. And uh, and I just listened to him and I came home and I told my wife, of course, told my parents, and my aunt was my father’s sister. And I said, no, no, you don’t call her. You don’t call anybody. This is between the four of us, uh, excuse me, the five of us. ‘Cause my sister also and my parents. And my wife. And I just don’t wanna keep this a secret. So… And that was it. And I… Nothing really changed, and there was no reason to disclose because it was mild for about a dozen years, 13 years. And my condition changed in January, 2003. Uh, when I was noticing more pronounced, uh, sensations, numbness, that was, uh, actually going up the entire arms, up the entire leg. Sometimes I fell in my face. Uh, in the middle of business meetings or something. So look around the conference room. Has anybody seen what I’m feeling right now?

[(2:46)] Stephanie: Hmm.

[(2:47)] Ken: No. ‘Cause only I know what was going on inside my body. Uh, but I, uh, I decided to return to that original neurologist who did a second MRI of my life, uh, in April, 2003. He said, I’m sorry, Canda, this is advanced.

[(3:05)] Stephanie: Hmm.

[(3:05)] Ken: Uh, and uh, and it was… So I then went, I went to a different MS center after that and I was put on a, a, a DM, a disease modifying therapy. And I continued going back my normal work. I’m not gonna let MS get in the way. I, I have a, I have a suc-, I changed jobs and I had a very successful career and I was enjoying the job, and MS is not gonna get in the way.

[(3:32)] Stephanie: Yeah, and it’s like you said, easy to sort of hide it away when it is totally invisible and the decision to disclose is a deeply personal one. I, I told a lot of people, but I very much try to control the narrative and try to control how people responded back to me and I found it was hard to like emotionally support other people through your diagnosis over and over and over again. So I completely hear what you’re saying. Can see that point of view as well. And there’s no one size fits all. Everybody has to make their own decision. But what we’re your personal decisions beyond what we already just touched on that made you delay that disclosure, particularly at work?

[(4:14)] Ken: Well, I was, well, particularly at work because it’s, it’s, it’s my attitude about any health issue when, when working, even if you have a, the flu. You know, somebody’s business. I’ll take a sick day or something if I have to. If not, I’ll show up to work. And certainly with, with Ms, uh, I was continued to work fine. I was producing, uh, and it was, it was affecting me. I, I was noticing things. I was, I… My career was in public relations. I was the head of communications for international, uh, nonprofit advocacy organization, which involved, uh, handle all the media. This is pre-social media, but I started out, so all kinds of media, print, tv, radio, digital, uh, uh, here in the US, Europe in the Middle East. Uh, so it could be on call, uh, really around the clock and about a lot of travel too. And why should I say anything, um, and get a reply. Oh gee, Ken, I don’t think you can go on the trip. Uh, I didn’t want that to happen. And I was continuing to produce and felt, and if I felt any certain sensations that my scene impede what I was doing, so I, I wasn’t gonna allow this to get into the way of, of my, of my work. And by the way, in a personal life also, I continued that attitude. Nobody needs to know this. Uh, and what is gonna keep the secret and in part that was, I, I don’t want any, any way did this, my, my deep secret was gonna seep out whatever, uh, that, uh, that, that a casual conversation with, with a relative or a colleague or even a friend who had nothing to do with what my job might, might somehow circle back somehow.

[(6:00)] Stephanie: Mm-hmm.

[(6:01)] Ken: And, uh… So that was, that was my, my attitude but I, I started on the, uh, going to the, uh, MS Center of Mount Sinai Hospital in New York. In, in May of 2003 I was on the DMT and, uh, and I had to go. And they were monitoring me very, very closely, uh, with the standard examinations, the blood work, uh, but also if something was changing, you know, come come.
And it was involving, uh, a lot of business to the doctor and, and my my boss, the CEO of of the organization, uh, would say, Ken, is everything okay? You seem to be going to the doctor a lot. Yeah, everything’s fine, David. Not to worry. So I changed my appointments to lunchtime. So it wouldn’t interfere with the day. But still, uh, it’s a half an hour subway ride and who knows how smoothly the visit goes. Could be an hour, it could be delayed, half an hour back. And, uh, it, it was began to dawn on me that I, I think I just may have to tell. Uh, but what, what’s, what’s going on with me? And, uh… Because it was, it was clearly a very… We know MS is very unpredictable and I wasn’t sure where, where my path was gonna be going. But I, I, but it, I didn’t tell right away. I, I went through a very long process of thinking and cons- consulting.

So, so just, just to recap something, uh, I… Where I was working as, uh, as director of communications as an organization called the American Jewish Committee, a global advocacy organization. I began working there in December of 1998. So that’s, let’s say eight and a half years after I was first diagnosed, and it was mild, really no symptoms. And, and so I was on this job already for five and a half years and had a enjoying it and joined around the clock, the challenges and joined international travel. Very, very close relationship with the CEO. And I had known, uh, I had known him even before I got the job. Uh, we go, go back many years. So, I say that because that sort of influenced my process of deciding whether or not to disclose at work. Uh, because as, as Stephanie, as, as, as we know well with, with MS, a lot of people did not disclose at work. They, they… It’s a very individual decision and… But once you disclose that, you can’t take it back. So I, uh, began in, uh, uh, when my condition had changed and, and, and the second MRI, in, uh, in April, uh, 2003, showed that, that I, that I needed to start being on, on, on medication. And I was feeling the sensations and I… To, to everybody around me I seemed normal. I was producing normally. But I, but I was feeling the difference. And I was feeling, you know what, I don’t have the same stamina. I can’t stay up at late at night write in an op-ed or a press release. Uh, and, but at the same time I was… We, we were… There was a lot of work to be done that I enjoyed and I had a new assignment, uh, that the organization was gonna open an office in Brussels in February, 2004. Why would I tell anybody that I have MS. Uh, who knew what the reaction would be? Would they say, oh, that’s, that’s nice, Ken, you’re gonna stay back in New York and, and handle this all locally. We’ll hire a local PR agency who, who knew what the reaction would be?

[(9:52)] Stephanie: Mm-hmm.

[(9:53)] Ken: So, I, I, I, I persevere and I, I went through that.

[(9:57)] Stephanie: Yeah. And I totally understand the tension of like not wanting to be treated differently, certainly missing out on huge career opportunities, right? Your career was a huge part of who you were and your identity still is. Um, and I, I think a lot of people listening can certainly identify with that. And then as you described, you start having more difficulty being able to hide, right? The doctor’s visits the symptoms and realizing that. In conversations, it, it might be useful, right? I can’t imagine the, the pressure of hiding it from people that you’ve known for decades. Um, so tell me, what was it like to disclose and, and tell me about those conversations that you had specifically, especially with your wife and your boss.

[(10:43)] Ken: First of all, it’s relap relapsing remitting MS it’s very easy to hide it.

[(10:48)] Stephanie: Hmm.

[(10:49)] Ken: So what my, when my wife, she was very concerned about, uh, about my, my disclosing and what that might do to my, to my, uh, to my job, to, to my career in general. Uh, and, uh, at the same time, there was, at the MS Center, Mount Sinai, there was a social worker on staff.

[(11:08)] Stephanie: Hmm.

[(11:09)] Ken: Uh. Uh, uh, Tova Epstein, who was available for this kind of thing. So I began having conversations with her soon after I started going there, just about the work situation. And through that process of just talking to her, I began to think about, I, I’d be ready to say to, to disclose. And I wanted to disclose ’cause I just wanted my, my, my boss, the CEO, to know I have MS, something may happen and something may not happen. But just so you, just, in my back of my mind, in case something does happen, whether we’re in New York, whether we’re traveling, uh, that, that it wouldn’t be a, a total shock.

[(11:53)] Stephanie: Yeah.

[(11:54)] Ken: The question is, was when is the best time to do this?

[(12:00)] Stephanie: Right. And that’s where the social workers are so useful, right?
Not everybody has that. That social worker to talk about how to frame those conversations and when to have those conversations.

[(12:12)] Ken: No, the social worker was essential. Absolutely critical.

[(12:15)] Stephanie: Yeah. Yeah.

[(12:16)] Ken: And if, if, if you have the good fortune of a, uh, being treated at MS center has a social worker on staff, by all means introduce yourself to the social worker for, for whatever reason. Just conversations without anything.

[(12:29)] Stephanie: Mm-hmm.

[(12:30)] Ken: It could be about work, it could be family life. Uh, so we met, and it was several times during the course of that year that I came very close.

[(12:37)] Stephanie: Hmm.

[(12:38)] Ken: I said, today’s the day, um, I’m gonna go into the boss’s office and, uh, uh, or sometimes we, we rode the same commuter railroad home after work. Uh, I’m gonna do on the train, and then I would just pull back.

[(12:52)] Stephanie: Hmm.

[(12:53)] Ken: I said just, it’s just not the right time. I, it’s, it’s, I just, just… I’m not ready if, if, if, if the reaction isn’t what I, I expect. Uh, so I finally in, uh, late May of, uh, 2004, so it’d been a year since I was, my diag- my situation had changed since that second MRI, uh, we were working late Asheville. It was a Friday night. We were working late, which wasn’t unusual. And I said, that’s it. Nobody else is in the office, just me and him. I’m gonna go across the hall to his office. And, uh, I, I walked in. And I said, uh, David, remember some time ago you were asking why I’m going to the doctor so much, so often? He says, yes. He says, is everything okay? I said, well, actually, uh, everything is not okay. Uh, I be going to the doctor because I have multiple sclerosis. And he looked at me a little disturbed, shocked. I said, do you, do you know what MS is? And he, he admitted he wasn’t really familiar with it. And so we, we had about an our conversation about MS. About my whole history of dealing with MS back to the first diagnosis. So he was quite startled that, and we were working so close together, it was kept a secret. Um, and he said, are you, are you ask-, are you telling me because you want to resign? I said no.

[(14:30)] Stephanie: Mm-hmm.

[(14:31)] Ken: I’m not, I’m not resigning. I’m telling you, just so you’re aware of it in case anything happens and hopeful every, nothing ever happens that would, would affect my job. But just want you to be aware of this. Um, and, uh, and he said, okay, I will, I will not tell anybody else on staff unless, unless you want me to. Uh, and we had a we had an extended conversation that evening about MS in general. And at the end of our meeting that Friday evening, uh, I handed him a, a copy of an op-ed article I had written months earlier. ‘Cause I’m, I’m a writer and, and, uh, it was sort of therapeutic for me many months earlier. I’m gonna just express myself in writing and craft an op-ed article expressing the loneliness of dealing with MS. Uh, which Stephanie turned out to be one of the reasons I wanted to tell him also. ‘Cause this was sitting in my home office it wasn’t going anywhere. And, and, and even though…

[(15:35)] Stephanie: Yeah.

[(15:36)] Ken: …people, people at the MS Center had looked at and said, Ken, you should publish this. It’ll be helpful to people. Well, you can’t publish this article if I don’t tell the boss. So I handed it to him that Friday evening and Monday morning he went straight to my office and he said, you, you have to publish this.

[(15:54)] Stephanie: Yeah. But publishing it meant you had to come out. Right? You had to come out with it finally. And I’m sure now it’s starting to feel like a little bit of a relief. You’re no longer living with that fear of being found out. And you had created this incredible piece of work, which I hope we can link to it in the description of the podcast, but…

[(16:15)] Ken: We, we will and it was, it was, uh… Yeah, he, he, he actually insisted, uh, he insisted. He said, you, you ought to get this published. We’re so moved by it. Uh, and he said, send it to the International Heart Tribune. Which, which at that time was a, was a pretty prominent paper that, that I was familiar with. ‘Cause I was, I was submitting op-eds there for, for work, not written by me, but by my boss and by others. So I, I, I knew the opinion editor there.

[(16:39)] Stephanie: Yeah. Yeah.

[(16:41)] Ken: It was a good, and they, they accepted it right away. It was published a few days later.

[(16:45)] Stephanie: Can I just say, um, your boss is like the case study of the perfect way to respond. When somebody tells you that they have MS or discloses a big diagnosis, right? Like the best case scenario is you you get curious, right? You wanna learn about what MS is, about how it affects the person. I love that he actually asked you what your boundaries were instead of assuming that that meant. That you can’t work. Right? He asked you outright, but he didn’t assume anything. And then he encouraged you to, to be authentic and to use your voice and to use your unique job and skillset and platform to have an impact. So tell me what life became like, like after that op-ed.

[(17:28)] Ken: Yeah. So I mean, so David, the CO, my boss said, life will just, he said, are you, are you… You tell me ’cause you can’t travel. I said, I, I, I will, I’m not resigning. I will let you know if I don’t think I can travel.

[(17:42)] Stephanie: Mm-hmm.

[(17:44)] Ken: And, uh, and he was fine with that and I continued to travel. And, and even traveled with if at times I had certain symptoms. But, but I was, it was, it was too exciting. And I was playing a critical role dealing with, with media when we traveled either.

[(17:57)] Stephanie: Mm-hmm.

[(17:58)] Ken: Domestically, but a lot, a lot of international travel. And, uh, I told a few people that this article was coming out because I, I, I knew colleagues. Certain colleagues that would read that newspaper. I just wanted them advance notice and, and each of ’em said, oh, you know, they, they, they’re concerned about me. Uh, but each, the handful colleagues, I, I told that they said, we, we won’t tell anybody else.

[(18:20)] Stephanie: Mm-hmm.

[(18:22)] Ken: Uh, unless, unless you want me to it, it’s okay. Then once the op-ed came out, you know, it’s, if you want to tell people it’s okay, but it wasn’t, they weren’t gonna go and, and blast it was gonna be an eblast ocan MS.

[(18:31)] Stephanie: Mm-hmm.

[(18:32)] Ken: They weren’t doing that. Uh, so, so… No, the work went around when just proceeded fine. Um, and I felt a, an enormous, uh, sense of relief having had that conversation.

[(18:47)] Stephanie: Yeah.

[(18:48)] Ken: Um, with, with, with, with my boss, I mean, he did say, you know, how’d you keep this such a secret? Why wouldn’t you tell me earlier? So I, uh, I honestly, I didn’t really answer that right. Because…

[(19:03)] Stephanie: It’s personal. That’s a personal.

[(19:05)] Ken: Said say, say it’s personal. Um…

[(19:06)] Stephanie: Yeah.

[(19:07)] Ken: I, I was kind close. But, but in, I mean, we had several hundred people on staff. Lots of people have secrets and, and some people had other health issues that, that, uh, uh, but I, I wanted to keep it secrets. So we continued doing that. And it was, um, um, about a year later, uh, I was contacted by a a health correspondent for the Wall Street Journal. Uh, who was writing an article about, uh, disclosing at work, MS. Disclosing MS at work. And we had a couple conversations. And I said, well, I’m out in public already and I’d be happy to talk to you. And, and we had, uh, several, uh, conversations over lunch. Uh, which led to some interviews, and then she said she wanted to interview the head of the agency, my boss and I talked to him about this and he said, fine. He was happy to do the interview too. I, I thought it was just one of many being interviewed and the… For the story.

[(20:13)] Stephanie: Mm-hmm.

[(20:14)] Ken: As it, as it turned out, uh, when the Wall Street Journal article came out on, uh, uh, the end of March in 2005 I was a story. And uh, um, and it was, it was, I was there on the front page of the Wall Street Journal. Can you imagine?

[(20:30)] Stephanie: So now you go from never wanting to disclose to being the poster child or disclosed there and…

[(20:36)] Ken: On, on nationally and globally. So…

[(20:39)] Stephanie: Yeah. And now I, and I imagine then as a result, you, you, whether you intended to or not, became a resource for others and colleagues, and I’m sure people began to reach out to you as a result of that.

[(20:51)] Ken: They did, but significantly. Uh, it, it so ha- by coincide the, the morning the paper came out, we had one of our big staff meetings at the organization where we crowded a hundred plus people into the conference room. And it, it was Zoom people on Zoom from across the country, from overseas offices and, uh, and David, the CEO in front of everybody held up a copy of the Wall Street Journal.

[(21:23)] Stephanie: Not so secret anymore.

[(21:25)] Ken: It’s not secret anymore. And he said, and he said, this is about our, our colleague Ken, he has MS, and, and pointed to the article, he said, this is courage.

[(21:37)] Stephanie: Mmh. It is.

[(21:39)] Ken: And and he went on for a few minutes about that. And then we went back to, to the business of the day. So it was, it was it was enormously moving. Um, but it was, it was a reaffirmation for me that I’d done the right thing in disclosing at work. Um, so of course I had a lot of comments and, and people reaching out to me afterwards. Uh, I did always contacted people that I did not work with. People who it turns out were working in the same field, public relations at, at corporations. Other venues had seen the article and just reaching out to me and we had conversations and they were telling me, look, you know, this is your my story too, but I, I don’t disclose. Uh, and I passed through after a few days and then life just went back to normal at work. Uh, it was like a passing moment and, uh, it was more than a moment, of course. Uh, but, but everything was normal and MS really never came up again in conversation at work. And I realized, again, because what was happening in my body, I only I know about, to all my colleagues or the people we’re meeting with along the way outside the agency, I seemed just fine.

[(22:54)] Stephanie: Mm-hmm. Yeah.

[(22:55)] Ken: Um, it’s just normal, Ken, he’s producing, he’s doing the work and, and, uh, and, and that’s, that, that, that was all very, very good.

[(23:03)] Stephanie: Yeah, I think a lot of what you said resonates. I, I disclose early on, and obviously I work in MS and so it’s pretty, pretty apparent that I have it and, and it comes up a lot. But what I don’t disclose is how my symptoms impact. So like everybody knows I have MS, but not many people actually know like what that means on a day or what that that implies. And like you, you know, I have a very busy job that I’m required to be very productive in.

[(23:31)] Ken: Yes.

[(23:32)] Stephanie: So like you, I’ve like just stayed in tune with it. I haven’t let it stop me from doing anything, but I absolutely do, like build my day around what works and what doesn’t work, and I travel a lot and have to plan for breaks. I never fly in and dive straight into meetings. I try to arrive the day before, right? So like these little tips and tricks that, that make it doable and make it sustainable. What other tips do you have for those navigating a career and MS at the same time?

[(24:01)] Ken: Well, well, well, firstly, don’t, don’t let MS get in the way of your career or, or, or, or your life. I continue to enjoy life to the best of your ability. Uh, I mean, that’s what the society is all about. Is, is to enable people to leave MS to leave their fullest, their their best lives possible with, with MS.
And, uh, and do not let it in, get in the way of doing your work. But that’s, that’s, that’s one tip. But without even deciding to disclose. ‘Cause again, disclose is a very, disclose is a very personal decision. And, uh, they could have positive ramifications, but it could also have adverse ramifications.

[(24:44)] Stephanie: Absolutely.

[(24:45)] Ken: Nobody, nobody really knows. Uh, and despite, uh, Americans with Disability Act and other protections that we’re well aware of, it doesn’t guarantee what, how a an employer’s gonna react. Uh, so, uh, that’s, that’s the main, the main tip.

[(25:04)] Stephanie: Yeah. I mean, and, and you retired last year from this amazing career. So what’s life like now?

[(25:10)] Ken: So, so two years ago, so yeah. So in May 23, I decided to retire from, uh, American Jewish Committee. I’ve done it for 25 years. It was amazing. And, uh, uh, I just said I, I wanted to do something else. It was been around the clock. And since I’d been on staff a long time, they, they wanted to do, do something big for me at the office. I said, no, just a lunch with a few people would just be fine. So no, can’t we have to do a big party. So it was a big thing in the, in the office. And they, they brought some people in from Zoom also, uh, uh, to, to watch what was going on. And I just expected, uh, there’d be some speeches, um, reminiscing the 25 years commending me for the work, how we work together in public relations and media relations, the achievements, the certain, uh, unique events that we had produced together. They got a lot of media coverage. And the, uh, the first speaker was the, uh, was the CEO David who had retired a few months earlier, but he came back. Uh, and in the course of his remarks he, uh, he mentioned my MS. And uh, and there were a handful of other speakers, longtime colleagues have a couple who are more recent colleagues. The hand-, the handful of, uh, other speakers, uh, a couple of whom have, have relatives with, with MS and we had sp after it went public, they, they had spoken to me about, about, about the MS. Uh, basically nine, 10 speakers at this lunch, and every single one of them, uh, talked about my MS.

[(27:05)] Stephanie: Hmm.

[(27:06)] Ken: And, and, and, uh, describing, uh, that, and I, I was just, I was, I was surprised, deeply moved, and, uh, and I, I, I realized then a couple of things. One, it was the right thing to do,

[(27:23)] Stephanie: Mmh.

[(27:24)] Ken: years earlier to, to disclose, um, e- even though I think possibly I could have kept it a secret all those years, although it would’ve been very, very hard to do. So, it was the right thing to have disclosed earlier. And it was, it was, uh, and I, I, I had actually beat in the MS at work.

[(27:44)] Stephanie: Hmm.

[(27:45)] Ken: Because, uh, I had a successful 25 year career there. And MS didn’t get in the way.

[(27:53)] Stephanie: Didn’t only get in the way, but it was a strength.

[(27:56)] Ken: I guess so.

[(27:57)] Stephanie: Yeah.

[(27:58)] Ken: It was, in a way, in a way it was a strength and, and sort of characterized me,

[(28:02)] Stephanie: Mmh.

[(28:03)] Ken: to my colleagues and others about how I, how I deal with illness.
Not, not…

[(28:06)] Stephanie: Yeah.

[(28:07)] Ken: And in particular, but MS, uh, especially. So I, I retired from that job. I did not retire.

[(28:14)] Stephanie: Yeah.

[(28:15)] Ken: Uh, because it’s… You wanna, you wanna be busy and engaged. So I, I’ve been involved with society for, for many years, um, especially after I came out and, and, and went public. Uh, and I was determined to get more involved with, with the society, um, from of course fundraising to, uh, uh, advocacy in Albany and Washington to PPC, helping out with some communications, doing a lot of writing. And I’ve been serving on the, the board at the Greater New York City, long Island chapter now for five years. Uh…

[(28:50)] Stephanie: Yeah. And that, that’s amazing. We’ve had the the pleasure of meeting at at advocacy events…

[(28:55)] Ken: Mmh. Yes.

[(28:56)] Stephanie: …in the past, and hopefully we’ll continue to run into each other there.

[(29:00)] Ken: We will.

[(29:01)] Stephanie: Yeah. Well, I mean, your story is such a powerful reminder that disclosure is deeply personal and it can be scary and like we’ve mentioned, there are pros and cons, but it can definitely be a strength and it can be empowering both to you and to the people around you. And I just really like to thank you for coming and sharing your journey with us because I think it’s a really powerful one and for letting us your voice today.

[(29:28)] Ken: My pleasure. I was glad. Thank you for having me on the show and, uh, and, uh, I’m, I’m very happy to share and talk to others about my experience.

[(29:37)] Stephanie: Thank you. Thank you for listening to this episode of the Can Do MS podcast. If you like this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS podcast. Until next time, be well and have a great day.
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