MyCounterpane founder Kate Milliken sat down for a one-on-one conversation with her neurologist, Dr. Stephen Krieger, to discuss MS and the fear of the unknown. If you've been diagnosed with multiple sclerosis, you know this is a recurring theme in your daily life. You've probably wondered, "What's going to happen to me? What's going to happen to my children and family?"
We certainly have. Which is why Kate and Dr. Krieger sat down to discuss the challenges of such an unpredictable disease, and the role that optimism and a positive outlook can play in helping to alleviate the fear that comes with an MS diagnosis.
If you've also had these thoughts, watch the video above or read the transcript below to learn what Dr. Krieger thinks about how to live with the fear of the unknown to prosper and thrive.
KATE: Hi everybody, it’s Kate Milliken founder of MyCounterpane for MyCounterpane One-on-One, and today I’m here with Dr. Steven Krieger, who is a neurologist and specialist at the Corinne Goldsmith Dickinson Center for MS at Mount Sinai in New York City. I am thrilled to admit to the world that Dr. Krieger is also my neurologist. He was with me when I was diagnosed, he’s been with me for over a decade. And I was especially thrilled to take on this subject that we’re going to talk about today with him because I lived the experience with him, and that is new diagnoses and the fear of the unknown.
So Dr. Krieger, I’m just going to jump right in, you have now been a neurologist for over a decade and you’ve seen patient after patient be diagnosed. What is it like, from your perspective, when patients get the word that they have been diagnosed with MS?
KRIEGER: Well I think number one, people respond very differently to different news, and I think getting an MS diagnoses is never easy for anybody. Probably the only thing that everyone has in common is that its difficult news for anyone who receives it. Having worked at a Multiple Sclerosis center that says “Corinne Goldsmith Dickinson Center for Multiple Sclerosis” on the door, it’s not a huge surprise to someone when we first have that conversation because they’re in that center for that reason. So, it is often not the very first time that they’ve heard of it or thought about it when they come to me. Something about coming to an MS center and sitting down with a neurologist and hearing those words makes it real and new for everybody who gets newly diagnosed.
It’s hard for people, no question. People approach it very very differently. I think for some people, they believe it immediately, it’s a validation in some ways that they don’t feel right, and they want to know what’s wrong. They’ve long believed that something’s wrong and now there’s a name for it and a diagnosis, and full speed ahead. I think for other people, particularly for those who feel well, getting a diagnosis like Multiple Sclerosis makes no sense to them at all, and they reject it out of hand, like how could it be that they have this diagnoses. So it ranges from immediate acceptance to immediate rejection and everything in between.
KATE: I feel like in the world of MS too that, more and more I feel that MS is more common, but there’s also a feeling of not really understanding what it is in the first place, so kind of getting a grasp on that. One thing I would say certainly, probably a shining characteristic, is that MS is individual for everybody. How do you try to convey that to patients or caregivers?
KRIEGER: You pose this as the fear of the unknown, and I think the unknown and variability go hand in hand here. I think the unknown and unpredictability go hand in hand and there are still some things that we struggle to predict and struggle to tell someone in a definitive way and that can be very unsettling to people. In some ways, the unknown or not having a certainty of prognosis or a certainty of what having MS will be like, in some ways that unknown is the worst part about this diagnoses. Worse in some ways that more traditional bad news, more traditional news of you’ve got a bad diagnosis and something bad is going to happen. This is different, this is a difficult diagnosis to hear and to receive but it doesn’t necessarily mean a bad prognosis for everybody and the goal is for it not to be a bad prognosis for people. I think that uncertainty is very challenging to convey and challenging to hear.
KATE: I think about the fact that for people who come in with a diagnosis, they often come in with symptoms, and in some way when you’re in the moment experiencing the symptoms you have to get a grasp on them. I have to believe there are a lot of people who come in the door who try to quantify it, try to put it in some sort of framework. Is there anything you can talk about in that regard?
KRIEGER: Some people will say that even an unremittingly terrible diagnoses, like ALS, Lou Gehrig's disease, which basically only goes one way, that people are less depressed with that diagnoses than with MS. I don’t know if there’s data to support that conjecture, but that really speaks to the fact that the uncertainty of the disease can be as overwhelming as the certainty of something bad, and I think that’s psychologically very important and I try to remember that.
If I’m going to tell someone, “This is a very variable condition, you have a good chance to do well,” they might still walk away from it more depressed and more upset with that uncertainty than if I had said there’s no chance of doing well. As a clinician, I have to remember that, I have to stay aware of that, because I may think I’m giving someone good news by saying the prognosis is uncertain and we can do things, but it needs to be put to the positive.
To your question about quantifying it, it’s hard. Part of that is we like to quantify things. Part of it too is we’ve all grown up watching medical TV in one way or another , be it ER or whatever, and the way doctors are portrayed is giving people numbers. “You’ve got a 5% of this,” or “10 days this will happen” or “you have 3 months to live.” Fact is we never say things like that, really, because it’s almost impossible to be right, so I think people are bred to expect the doctor puts on the white coat and says everything in a very definitive, quantified way, and yet I try not to do that because I’m likely to be wrong.
And in MS in particular, with our rationale of treatment and disease modifying therapies, what they’re doing is reducing the risk of things, and we know that through clinical trial and data, thousands of people followed for dozens of years, but it’s hard to just give that to one person and say “Your risk is reduced by X percent.” You can’t do that for an individual person, but I do want them to understand what that data means, where it comes from, and how we can use that to make good decisions and give someone the best possible chance of doing well.
KATE: Talk about for you, as you go through this incredibly poignant conversation with the patient and caregiver, how much you are working with the philosophy of listening to people react with fear, sadness, and a half-empty perspective verses you personally thinking half-full?
KRIEGER: Me personally I try to be as half-full as possible with my patients, but on a personal level, I’m not always a half-full kind of person. I think anyone who’s universally, blindly optimistic lacks a certain nuance, so I try to come at it sensitive to pessimism, and bring the optimism to that. Because it’s real and it’s serious. It is. And if you’re facing uncertainty, it brings out someone’s underlying personality structure. I think that people come into the room having lived an adult life, or a young adult life, and they are who they are, and I think facing something challenging brings out someone’s underlying personality.
Someone who approaches everything with “I'm going to hit this as hard as I can and be relentlessly positive and broadcast it to the world”, that’s a certain kind of person. That’s who you were, walking into the room a decade ago, not everybody is like that, not everybody can be like that. So, I try to take things that I’ve learned from people like you, and how can we take that and try and apply a little bit of that thinking for someone for whom that kind of relentless optimism doesn’t come as naturally. How do I do that and try to make it fit for someone? So I try to talk about uncertainty and the range of possible outcomes as a positive.
KATE: In terms of my MS, I’ve been doing so well, and have not had a significant relapse in a number of years. Talk to me about the spirit you find for people who are much more progressed in terms of positive attitude, and how you see that making an impact in their lives, even if they are debilitated.
KRIEGER: I think that if people imagine that they will feel worse about things that can occur, they naturally will. It’s a deep concept in a sense, in the behavioral and philosophical literature, it’s called affective forecasting. How we think we’re going to feel if certain things happen. So someone newly diagnosed might say to me that if she’s ever in a wheelchair, her life is over, that’s it. I can never respond, “No you won’t feel that way.” I can never say that or know that about somebody else, but I’ll tell you, I take care of a lot of people who have real significant physical disabilities, they use walkers, they use wheelchairs, they use scooters. Their lives are not over, they don’t think of their lives as being over. They have adapted, they have adjusted, they have persevered.
Obviously things have not gone the way I want them to as their neurologist, or I may have taken over their care 20 or 30 years into this disease, but there are a lot of people who use chairs or scooters or walkers who live incredibly full and dynamic lives, who are contributing, working, traveling, whatever they’re doing.
I’m sure they felt the same way 30 years ago that if they were ever in a wheelchair, it would all be over, and that turned out not to be the case. So I try to respect that, I try to foster that, and I allow people to adapt to their physical abilities, adapt to their capabilities, and make the most of it and yet not be sort of full of platitudes along the way. I think you have to be honest and genuine with someone.
KATE: I love that, and I feel, if we’re going to get philosophical, I feel that when you start the MS journey and get the diagnoses, all you see is a linear progression to doom. I have felt through my own experience that as you start living and accepting and managing, getting perspective, all of the sudden in some ways the journey starts getting vertical. Can you comment on that?
KRIEGER: I think that people imagine their lives as a linear path in everything, in our careers or in our relationships, we’re going to hit certain milestones at certain times. I think the truth is, for all of us, disease or no disease, MS or not, I think life takes more turns than we anticipate, and when we look back, our lives have taken more turns than we might even realize to get us to where we are. I think that part of adapting to the unknown and the uncertainty of an MS diagnoses is an intrinsic ability to be flexible, be responsive, be able to adapt and respond to things that you didn’t anticipate.
What I try to do as a doctor is to frame it as “There’s uncertainty, but we know what we’re going to do if anything happens.” If an MRI scan changes, we know what other options we have for treatment. If symptoms emerge, whatever they may be, there'rethings we can do about those things. When the unexpected occurs, there’s a plan in place, or at least a sensibility that there will be a plan in place. I think that’s how I try to counteract the uncertainty in the response team, myself and the people here at our center, my patient and their friends or support team, so it’s not one person facing uncertainty alone, but rather to have a team of people and a response team in place for whatever may occur.
KATE: I almost feel like that’s putting a foothold into something that’s abstract, so you have a concrete thing to base your thoughts around. Are there any other footholds that you’ve found over time that have been helpful in terms of things you say to your patients, and also your caregivers. I don’t know if you feel like you’re talking to them differently, in the same meeting or not, but what are some things that you’ve found have been helpful to those people?
KRIEGER: I do talk to care providers and family members and whoever somebody brings with them, and when we’re in the waiting room and someone says “Can my mom come?” or “Can my husband come?” I say “Of course.” You want them in the room, you want them in the discussion. I think they’re an important foothold physically and then also to help to reinforce the kinds of things I want people the understand. Again, I get a few minutes with someone to say these things, and I think they bear repeating, and people need to hear them over and over again. So, I think there are people as footholds, I think that there are milestones that I try to look at with someone.
Their first one year scan, I want it to be stable. If it’s not stable, I want them to know what the plan is going to be to respond to that. I want someone to be well without new symptoms for 5 years, that’s a big milestone, for someone to say “Look I’ve been doing this for 5 years, and here’s how well I’m doing, here’s what the challenges have been.” I want people to look at the milestones in our field, how about that?
It’s footholds not just in someone’s life, but in the field of MS and MS research and treatment, I’ve come to say to people now, if someone’s newly diagnosed with MS, and she says “What am I going to be able to do in 10 years? Am I going to be impaired in 10 years in some way?” I’ll talk about that but I’ll also say “Look, it’s not what you can do in 10 years, what are we going to be able to do in 10 years that we can’t do now?” And I try to make sure that people understand that it’s not just the condition that can be dynamic, it’s also our field that is dynamic and we change along with it.
KATE: I would say as we finish up here, when you and I first met you were a fellow, and as a result of you being a fellow, I had the opportunity to book a 45 minute appointment, even though I had already been diagnosed, even though I was in therapy, just to talk about the fear of the unknown. For me what I remember was recognizing that the unknown was so abstract, and really getting to talk concretely about the abstract, and what I was left with was a feeling of perspective about it that I feel set the course of my healing. So, I would love for you just to close with talking about the importance of perspective at this moment in someone's respective journey, and some advice for somebody watching this today.
KRIEGER: I think this whole conversation today has been about perspective, and taking the time to talk to people about these things is something that’s important to me as a doctor. And it’s not been important to the way healthcare has moved in the last 10 years, and it’s been harder and harder for us to have that protective time in a sense, to talk through these things, but I still try to preserve it as much as we can. You know I think one thing that we talk about a lot is that MS is a community and there is a community of people who are there to share their information and resources.
This is a community that nobody ever asks to join, but then someone’s in it, and I think that it takes different people different amounts of time to come around to wanting that information, wanting that perspective. Some people want to banish it first, and maybe come to a growing acceptance in their own way. What I would say to somebody watching this who is newly diagnosed or even for someone who’s not, in a sense there’s always a part of it that’s not real or something that everyone has to face again when they get a new MRI scan. And I think that what I would say is that it’s never going to feel perfectly under control. Waiting for it to feel perfectly under control is a setup for never feeling that way, perspective comes from knowing that there is always some degree of uncertainty around it, and being as comfortable with that as possible.
And remembering too that there’s uncertainty before you get a diagnoses, and uncertainty after, and there’s a desire to control everything in ways that we can’t, but if we remember how much agency we do have as clinicians, and then how much agency our patients with MS have to take good care of themselves, be proactive, have personal power, positive health-related activities and behaviors. This is not a linear path to doom, it’s a variable path and I hope it’s a path with as much success and well-being as we can achieve now, and we’ll be able to achieve in the years to come.
What are your feelings about the uncertainty of an MS diagnosis? How do you deal with the unpredictability of the future? Let us know about your experience with the unknown in the comments!