Date Published: May 29, 2019
The science is in: We’re stronger together. Supportive social networks are linked to better health, protection against depression, and even a longer life. Multiple sclerosis patients Kate Milliken and Elizabeth Jones talk about how their tight-knit MS community has made them more resilient.
The two met on MyCounterpane.com (now moodify.com), then a thriving online community for people with chronic illness. And they are being treated by the same doctor, Stephen Krieger, MD, a neurologist at The Corinne Dickinson Center for Multiple Sclerosis at The Mount Sinai Hospital. Everybody can benefit from tight bonds with people who “get” them.
You're listening to Road to Resilience. I'm Jon Earle.
Kate B.: 00:03
Hi, my name's Kate. I've been isolating for a long time now and I just feel like swallowed. Like something swallowed me and I haven't been spat back out yet.
Hi Kate B., you being as courageous and brave as you are right now, not only does it make others understand where you're at, but it allows them to not feel alone too. Be easy with yourself, hold your sorrow and your grief and your everything gently. You are worth it and you are so valued.
Kate B.: 00:46
Monica, I can't even believe how amazing that post was in that video that you directed toward me. Ever since I joined this site, I've just received nothing but support for the first time in a really long time I like want to cry because I'm just feeling so grateful.
Once upon a time on a tiny island, on the vast wide open internet, people were being nice to each other. There was vulnerability and complete strangers responded, not by trying to score points, but with compassion. We often forget that the internet can be like this, but it always has been, at least in part. Since the very first chat rooms, it's allowed people who feel alone, because of what they like or what hurts, to comfort each other. Kate and Monica met on MyCounterpane.com, an online community for people with chronic illness. The website was created in 2013 by a different Kate, Kate Milliken. She has multiple sclerosis, a chronic neurological disease that affects about a million Americans.
MS Symptoms include poor balance and concentration, pain and fatigue. Many people with MS sufferer flare ups when their symptoms are worse, followed by periods when they feel more or less fine. Over time, the disease can lead to disability. Multiple Sclerosis is treatable, but there's no cure yet. With MyCounterpane, Kate put into practice what resilience researchers have confirmed again and again - positive support networks make us more resilient. Studies have linked strong personal relationships with mental and physical health. Simply feeling understood by another person for example, activates reward centers in the brain and helping others can boost energy and reduce pain. It's sometimes called the helper's high. These findings are especially important for people with chronic illness, which can be so isolating, but everybody can benefit from having strong ties to people who care about them.
On this episode of Road to Resilience, I talk with Kate Milliken and her friend Elizabeth Jones. They met on MyCounterpane and they're both patients at Mount Sinai's Corinne Goldsmith Dickinson Center for Multiple Sclerosis. In our interview they talked about overcoming isolation and how a supportive community helped them build resilience.
Kate Milliken: 02:59
My name is Kate Milliken, I am 47 years old. I live with MS.
Elizabeth Jones: 03:04
And I am Elizabeth Jones. Also have MS, diagnosed in 2002 and I'm on disability not working any longer.
Host: 03:16 I want to go back to before you were diagnosed. Can you describe the person that you were before that day?
Kate Milliken: 03:25
So I was diagnosed in December of 2006 and at the time I was living in Manhattan, I was 35, I was single, and I would definitely say I was living in extremely uber-Type A lifestyle. So an average day for me would be get up, get on a bicycle and go to Central Park, bike 40 miles before breakfast, have breakfast...
Kate Milliken: 03:53
40 at 20 miles an hour, go and have breakfast, go out and produce all day, which usually required me working with a crew. I had a video production company and we would go shoot interviews of, you know, we made mini documentaries for high end clients. So sometimes we'd have a field production day where we would get in a taxi with a shooter and we would unload, set up, interview, breakdown, and go to the next location, five different locations in a day. I would interview all five people, I would come back, I would take a shower, I would go out on a date or meet somebody, drink half a bottle of wine and do it six days in a row. That's where I was before MS.
Elizabeth Jones: 04:38
Wow. I had quite a boring life then before I was diagnosed. So I was diagnosed, like I said, in 2002. At the time I was working at Estee Lauder, as the Art Director doing all their advertising. So I was basically the inside front pages of all the fashion magazines, was my work, which was pretty great. And I was diagnosed and I, you know, I hid it because when I was diagnosed, people didn't know anything about MS or didn't know what they know now. And so the assumption was I'd be in a wheelchair in a week and I'd be dead in a year. I mean, they really didn't know a lot. And it was recommended by my friend who hired me at Estee Lauder to keep it quiet. And I did. And I had, you know, a pretty great career with nobody knowing.
Kate Milliken: 05:35
The whole issue of communicating and being honest about your MS is, is unbelievable. And I know that a couple of years ago there was this survey that was done with the National MS Society and Working Mother Magazine where they talked about, they surveyed women in the workplace. And they found that 60 percent of these women don't talk about their MS. Right? And it's a world of fear and pain what people are dealing with. You have no idea. But the idea of somebody trying to have a completely normal facade while having this whole other conversation in their body, you know, is, is really hard to imagine. And arguably I feel like having watched people make different choices of being expressive, you know, my experience of the people that keep it all bottled in that it's, it's unhealthy. Do you agree? I mean.
Elizabeth Jones: 06:24
I do agree. Yes.
Host: 06:26 I'm so interested in that journey, right, from keeping it in, to sharing it. Can you take me to, maybe to the first person you told and then tell the story of how you two met?
Kate Milliken: 06:40
Well, I made a very, I mean, in light of who I am, I made a choice immediately that I wasn't going to hide it. And I went down to Florida where my parents had a house and I knew we were going to go to a country club to play golf. And I knew everyone I knew was going to know right? And sure enough, like I walked in and I could feel the "woosh." It went through the people who were there, I could feel that they knew. So it was really that kind of facing that was what it was. And I almost felt like a little scalded, defiant dog. Like, yeah so what?
Elizabeth Jones: 07:18
That's interesting. I mean, the first person I told was a little random, but it was my neighbor. I was coming out of my apartment, we were coming out of our apartments at the same time. I have my walking stick and he said, "Oh, what happened?" Which was often the question, because people looked at me and thought it must be some sort of injury. And I said, I actually, I have MS. And I think he said, "Oh, my cousin has MS," which I find is often the response. What was the second part of that question?
I want to know the story of how you met?
Elizabeth Jones: 07:56
Oh, right. Kate. How we met, well, uh, when I started to have symptoms, I felt they really needed to meet people, other people that have MS because I always say the only people that understand having MS, truly understand it, are other people with MS. And I saw Kate's interview on, was it The Today Show?
Kate Milliken: 08:25
Yeah, I got up to talk about on World MS Day, Stephen Krieger from Mount Sinai, who is our shared doctor by the way, shout out! And I got to talk about MS on The Today Show.
Elizabeth Jones: 08:37
And I thought, I would like to meet her. And I went online and I found your website, MyCounterpane and then you invited me to lunch. Well it wasn't just me, you invited?
Kate Milliken: 08:52
Well, I actually invited everybody from the tri-state area who had registered for MyCounterpane, which was about, I think it was like 84 people may have even been over a hundred. And guess how many people showed up? One. And it was Elizabeth Jones.
Elizabeth Jones: 09:08
Now, you must wonder God, she really has nothing to do.
Kate Milliken: 09:12
That's not what I thought at all, I thought thank God! And then I thought, you know, cosmically what does this mean? Like instead of being disappointed by this, what is the message? And what was so great is we had a wonderful lunch, I remember, and at the end, I wanted to take a picture or whatever. And Elizabeth, in light of who she was at the time, didn't want to smile because she didn't like her teeth. And when I look at that picture of who she was then compared to the person sitting right next to me, it is amazing.
Elizabeth Jones: 09:45
Thank you. Yeah. Big Smile. I mean, you've definitely have brought out the best in me, Kate.
Kate Milliken: 09:51
You've brought the best out of yourself, let's just be clear. But I'm glad to be a facilitator.
Elizabeth Jones: 09:55
Of course you would say that.
Kate Milliken: 09:57
Elizabeth Jones: 09:58
Can you talk a little bit about MyCounterpane? So just explain in a few sentences what it was?
Kate Milliken: 10:03
Yeah. So MyCounterpane was an online storytelling platform that aimed to connect vulnerable people to others who really got it. And I built a storytelling methodology called "moodifying," where you had to pick one of 13 emotions and then a date and why you felt how you felt. And what it did was it created a visual graph of someone's emotional journey, but more importantly, it broke people's whole story into searchable moments of content. So I solved my own problem because you could go back on MyCounterpane and say, I'm 35 years old. I live in New York, I have relapsing remitting MS, and I'm scared. And what came up in the activity feed were moments that hit those criteria. So I have found that if you find one moment that you can emotionally relate to in a time of vulnerability, in that moment you eliminate your loneliness, which has been now shown by the surgeon general to be the greatest epidemic of our time. And you start to heal. And the coolest thing about MyCounterpane is we ask people to be very vulnerable. Once people decided to do that, they became super users. So we had a core group of people living with MS who "moodified" at least 11 minutes a session at least once a day for over two years. And for every post that a super user on MyCounterpane posted, they would comment four times more than they posted. So what we began to see is people not only got perspective on their own journey, but they found a way to help others. And, you know, in a nutshell we created an unconditional love.
Elizabeth Jones: 11:39
Absolutely. You know, it's interesting, that day that we met, you told me I should go on and write my story and journal and you said you can do it privately. So I went on planning to do it privately, but I read a young man's journal, something that he had written about being at college and his MS and how it was affecting him. And it was sad. And I was touched by it, so I thought, no, I'm not going to keep it private. I'm going to write. And I, from that day on, I did, I wrote a lot.
Kate Milliken: 12:15
Yeah, because Elizabeth's story is fabulous in terms of who she is. And also I feel like your ability to reflect.
Elizabeth Jones: 12:22
What was it like for you, Elizabeth, as someone who came from more of like a closed place to not only be sharing kind of these very personal moments but also seeing other people's?
Elizabeth Jones: 12:33
It was a great release for me to get it all out there, to tell my story. It was great to connect with people that understood, you know, it was wonderful. It brought tears to my eyes sometimes when I would write. I would write rather lengthy pieces and how many people were like, "Oh my God, that's amazing." And they were positive and, and I was quickly endeared to everybody. I mean, I fell in love with the whole group. You know, we're great friends now even though we're in different parts of the country.
Kate Milliken: 13:12
And we're so different.
Elizabeth Jones: 13:13
And we are so different, snowflakes, we all are.
What have you learned about resilience from your journeys?
Kate Milliken: 13:23
You want to start?
Elizabeth Jones: 13:24
No, you start.
Kate Milliken: 13:25
Okay. So for me personally just is that I have found no matter what curve ball comes, my dad died last June. Somehow, I've gotten to a point where I can reframe, like I am a reframing master. So you know, if something's going terribly, it's like, it's going terribly so far, you know, like, believe, have like blind faith, you're going to get a nugget, like one little foothold that you're going to hang on that's going to start to change your perspective and whether you will, it, whether you put yourself out there to find it.
You know, one thing I know through social support and I saw it over and over with people, is that when you spend enough time supporting other people and seeing their journeys, you get perspective on yourself. And that shift of perspective is where I think it's at in terms of starting to become resilient. Because not only do you start, you know, we'd have people “moodify” and they'd say, I'm angry because my hand doesn't work. But instead of saying, I'm so angry that my hand doesn't work, they would say, my hand doesn't work, but at least my feet do. Right. That perspective, you know, and that's probably been my biggest, like I've somehow built a muscle of resilience that I think has really served me well.
Elizabeth Jones: 14:43
Yeah, it's interesting. I'm also a glass half full type person. I mean there's definitely, there are things out there, there are better ways. And I, one of them for me has been equine therapy and not only the riding and the exercise have been great. But the connection, not with the horses but with, I've now met a whole group of people that have MS that I ride with, which has been great, but I just keep finding ways to make it better because the old way doesn't work anymore.
What do you do or what do you think on when you're having a bad day to kind of get yourself back up?
Elizabeth Jones: 15:29
Having a bad day. You know, I do have complete meltdowns, Kate knows. When suddenly my left arm is not functioning correctly, my dexterity is horrible, I can't even type kind of thing suddenly happens and I just think, oh my God, this is it. It's just all downhill from here. But I will say, I always maintain that this will pass, tomorrow will be a better day. I always know that somehow, or I imagine that somehow.
Kate Milliken: 16:09
You kind of acknowledged that you can't stand having MS.
Elizabeth Jones: 16:12
I can't and I can't. And I actually just had a dinner party the other night and I said it. I said, I hate MS, you know, because my friends want to talk about it, which I don't want to talk about it, but you know, they're very supportive and they want to hear what's going on. I had to admit to them that earlier that day I had a complete collapse physically, like my legs went out from under me. I find myself at when something like that happens, getting up and saying, okay, first of all, you have MS. Like it's okay. I have to own it and acknowledge that it's a reality. Which it's constantly hard for me to admit it all the time. Is it for you?
Kate Milliken: 17:01
Yeah, well I think that's where the struggle is for everybody.
Elizabeth Jones: 17:04
Kate Milliken: 17:04
I'm not, by the way, I'm not biking 40 miles at 20 miles an hour anymore, just to be clear because I had to recognize that doesn't work. Okay. You know, so I do feel like there's a level of acceptance.
Elizabeth Jones: 17:19
Kate Milliken: 17:19
And also that thing of like, be gentle on yourself.
In the beginning I had you both described yourself before you were diagnosed. Can you compare yourself now to that person?
Kate Milliken: 17:33
I would say that I function on a total bed of gratitude. I'm just so hyper aware of everything that I do have. I also deeply appreciate the richness of the life I lead as a result of MS. I spend a lot of time talking to people with MS and I just think it's such a gift. So I would say that I am enlightened as a result. And I also feel like MS has certainly given me purpose of wanting to fix a problem that I lived. And you know, I am a mom of two, I had a startup, I'm managing an awesome husband. I don't have to manage him, but he's part of the equation just saying. I've never been more stressed and tired in my life, and my MS has remained stable and I attribute all of that of having a force field of which people like Elizabeth are part of. So I feel pretty lucky and strong.
Elizabeth Jones: 18:38
I feel the same way. You know, it's a good point. I haven't had a relapse in over four years and before that I had three relapses within a nine month period. So things were bad. Now, I feel like I say I have MS, and now I'm making MS work for me. I'm doing this podcast for instance and different things in my life. MS is a part of my life in a good way, not in a, it's taking me down. So it's in many ways it's lifting me up.
Kate Milliken: 19:25
Wow. You're sort of profound Elizabeth.
Elizabeth Jones: 19:29
Yeah. Not bad for a short person.
Great. Thank you both so much for being here.
Kate Milliken: 19:36
Thank you. It's been a real pleasure.
Elizabeth Jones: 19:37
I agree. Thank you.
Kate Milliken and Elizabeth Jones are friends in MS and in life, they live in the New York area. Kate put MyCounterpane on hold last year because of funding issues. Some former members still keep in touch on Facebook, but Kate and Elizabeth say it's not the same. Facebook's algorithms make it hard to find videos and trace the emotional ups and downs. Now Kate is raising money to make a movie that will touch on her story, MyCounterpane and showcase users with MS-related disabilities who define resilience. We'll include a link to the trailer in the show notes.
You know, talking to Kate and Elizabeth made me wonder whether I'm investing enough in the relationships that I have. I think about this a lot actually. I mean I'm not the worst at keeping in touch, but I'm definitely not the best. All of us, I'm sure can do better. And not just for the reasons I talked about earlier, like close relationships are physically good for you, but also because of the ties we built in good times protect us when times are tough. Interdependence is strength. I'm so grateful to Kate and Elizabeth for driving that home. If you are looking for a patient support group, ask your doctor for suggestions or visit the website of the nonprofit that advocates for your condition. For MS, it's the National Multiple Sclerosis Society. These organizations can direct you to local support groups. Road to Resilience is a production of the Icahn School of Medicine at Mount Sinai. It's produced by Katie Ullman, Nicci Hudson, and me, Jon Earle, our executive producers are Dorie Klissas and Lucia Lee. If you like the show, please subscribe and rate us on Apple Podcasts. It helps other people find us and makes us feel supported. Once again, I'm Jon Earle. Thanks so much for listening and we'll see you next month with more stories from the Road to Resilience.