Navigating Relationships with Tourette Syndrome

Join me as we unwrap the shared lives of Nicole and Ben Stark, both professionals navigating life with Tourette syndrome. In this heartfelt episode, we dive into the quirks and comforts of being in a relationship where both partners have Tourette. From amusing sugar packet fidgets to the support system they've built, get ready to be charmed and enlightened by their journey together.

Episode Highlights:

[00:36] - Welcome to 'The UpTic': Meet Nicole and Ben Stark, a couple defining what it means to live and love with Tourette.
[01:19] - The perks and trials of marriage when both partners have Tourette's.
[02:28] - The art of support: Ben and Nicole discuss how they help each other through the tough days.
[05:10] - Navigating the spectrum of co-occurring conditions and the importance of understanding each other's body language.
[07:51] - Managing work and vocal tics: the Stark's approach to focus and quiet spaces.
[08:46] - Entering the dating world with Tourette's: Ben and Nicole share their heartfelt advice on love and acceptance.
[10:34] - New parents to Anthony: the Starks talk about the joys and challenges of parenthood.
[16:24] Tourette's, self-esteem, and bullying.
[20:59] Tourette's, relationships, and self-discovery.

Links & Resources:

New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The UpTic' with others. 

Transcript

Nicole Stark  00:00 
One thing about me is I like to fidget. And especially when my tics were bad, I would constantly be fidgeting. One of the easiest things for me to fidget with was a sugar packet. It's easy to access when you're out there small enough that no one really knows what you're doing. And you know, if it breaks, there is a million to replace it and no one's gonna cry over some spilt sugar on the floor. So Ben would ever so slightly sliding a few sugar packets every now and then. And I was like, Okay, well, I guess it's not that bad. If you realize this is what I need to calm down.

Michael Leopold  00:36
Welcome to the UpTic brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Hello, and welcome to this episode of the uptick. I am here today with two incredible people that I've had the privilege of knowing for many years, Nicole and Ben Stark. Nicole is a school psychologist and Ben is a financial advisor and a certified financial planner. Now you're both in a really unique position of both having Tourette and being married to someone with Tourette tell me what is that like?

Nicole Stark  01:19
Well, it has its challenges, but it has its perks. It's someone who understands mostly what you're going through. But then it does get hard, especially on like, the bad tick days where you're just feeding off of each other. But it's been really nice to have that. I want to say like camaraderie, but it's more than that someone who understands more of what's going on with you and understands when you say I need space for this, just to have that support.

Michael Leopold  01:44
Yeah, yeah, I

Ben Stark  01:45
think for me, my, it's funny, I never pictured myself being in a forever relationship with someone else with Tourette's. And I don't really know why I just I guess I never thought that's sort of what would work out. And I'm really glad that I did for me personally, because as Nicole said, it's great to have someone in your life, we're really the closest person in your life, who truly understands exactly what you're going through on a daily basis. Tourette says, and really any neurological issue that someone may have, it changes, right throughout your lifetime, it can change on a daily basis. So someone who gets that, again, can be supportive of that, I think is great.

Michael Leopold  02:28
How do you both support each other when one of you or when both of you is going through a really challenging time?

Ben Stark  02:35
For me with Nicole, Nicole likes the love and support just being there for her and spending time with her listening to her I think life and Tourette's go hand in hand and meaning that like the stressors of life is what can make Tourette's worse. Or if your tics are worse, it can make life more stressful. I think it's just being able for me to help Nicole sort of work through those problems are just hearing about challenges she's had at work that day, or challenges that we've had with our newborn that they there's a lot of different factors that go into it. So being a good listener, and just being there for your partner is really I think what helps.

Nicole Stark  03:14
Yeah, and then for Ben, it's just reading his body language. Like today, he came in, and he was just like sitting on the couch. And I'm like, You need space. And he's like, I need time. And it's just understanding that everyone has their own way of calming down. And sometimes it's just vegging out. And sometimes it's talking.

Michael Leopold  03:34
I imagine it's a challenge when both of you have tics that are flaring, and you're feeding off each other. You're exacerbating each other's tics. Can you talk to me about when that happens and how you respond to that?

Ben Stark  03:47
It's funny make because I think you know, this, Nicole got into a car accident a couple years ago now. And her tics have pretty much diminished to zero since that point, I think prior to that, there were the flare ups, right. Like most folks that have Tourette's know that if you're in the room with someone else with Tourette's, if you take, it's likely the other person is going to tick with some makes you tick, and it becomes this domino effect back and forth. But we haven't really experienced that over the last couple of years just because the car accident, like I said, she still has it, but the symptoms and the tics have just gone away. Fortunately, there is no domino effect for now. 

Nicole Stark  04:28
Yeah, but I feel like when my tics were more prevalent, Ben and I also got to a point where we weren't feeding off of each other as much because it wasn't as exciting. I want to say like when we do have friends with TS come over, then and our friends will flare up more. But Ben and I like on a day to day basis, we would be okay for the most part unless I was having a very bad TIG day or he was I will say I do have him flare up from time to time out when I'm mimicking our newborn, like, if I make a sound, I will do it now. It's that spin off and he's like, can you please stop and I'm like, I'm not doing it on purpose.

Michael Leopold  05:10
It's interesting to also with like CO occurring conditions, just being the support for each other. I mentioned, it's super important that even if you both don't have tics all the time, like there's still your understanding, like reading another person's body language, are they anxious? Are they like just feeling kind of down? OCD, things like that, you're, there's a whole spectrum that we have to support each other on, and I mentioned that can play a role to absolutely, at this point, you guys are probably able to read each other's body language pretty well, right? Like, you know, each other's tics, or Nicole, you know, all of Ben's tics. Can you guys tell pretty well, like if someone's when their tics are getting worse? And then like, proactively respond to that? 

Ben Stark  05:52
Yeah, Nicole definitely knows. She probably won't necessarily mention it straight to my face. But, you know, she might say, Hey, you haven't made a doctor's appointment in a while, you probably should not say, Yeah, you're right. I know, I'm do because my tics are flaring up, right, or they're more common over longer stretches of times, especially towards the end of the day, like it's 815. At night that we're recording this, I work the whole week or the full day. Normally, when I'm more fatigued and tired from the long week, that's all my texts get much more frequent. The call knows that. And she knows that. I like to decompress and do things in my own way, and she just wants it happen.

Nicole Stark  06:29
I've also learned, don't bring it up. So if he is having a lot of tics, I shouldn't be like, Hey, you're ticking a lot, like what's wrong, I kind of live, let it subside, ignore it, and then try to help him through whatever was setting him off, if he will share.

Michael Leopold  06:47
That's a really interesting point, I find I relate to that a lot. And everyone would tread is different. Of course, as you guys know, like, some people might want that more that engagement or Hey, what's wrong or something? I get frustrated if someone, even if it is like a loved one asks me Hey, like, what's wrong? Like, where are your tics so bad? I'd rather just kind of be left alone in a way. And then I mean, if they can, like, take something off my plate or so like, Hey, do you need a minute or something, I do appreciate that. But like directly acknowledging the ticks, I have also found can sometimes make it worse. It's awesome that you guys are finding those ways. I mean, you've had years of finding those ways to support each other. I think a lot of our listeners will be people who they have Tourette but they're probably dating someone who doesn't. In most cases, sometimes tics can annoy other people. And we should never apologize for our tics or feel the need like this is our fault or feel guilty for it. But you guys might have an interesting perspective on that, like being in a room with someone when you're trying to focus you're trying to do work and their vocal tics are going, is that ever an issue in your relationship? And how do you guys go about addressing that?

Nicole Stark  07:51
Ben's Just loud in general?

Michael Leopold  07:54
Yeah, you get used to it. 

Nicole Stark  07:56
You get used to it. And then when you need quiet, you find a separate room where you go for a walk. I think for the most part, I'm pretty quiet. So Ben doesn't even know where I am half the time.

Ben Stark  08:07
That's true. Yeah, I'll call for Nicole in the house. And she'll say, yeah, no, walk down the stairs. And she's actually down the hall. I'm pretty bad about that. But I think for us, again, just because we both have it. in your right mind, when you're in a relationship with someone else who doesn't share that condition with you. There is going to be some inherent misunderstandings. And I think that before Nicole right, I think we both have probably found that with past relationships, which definitely makes it nicer to have someone that does have it because they do fully understand what you're going through on a regular basis.

Michael Leopold  08:42
What advice do you have for people with T.S. that are entering the dating world,

Ben Stark  08:46
I would say just be true to yourself. You don't need to try to change yourself or think that you need to be a certain type of person, just because you think that that particular person likes person with brown eyes or a person with a loud personality, even though you might have blue eyes and you're shy. That's just an example. But being your true, authentic self, you will find that person that appreciates you for who you are. And I think any good partner in life is going to look past the Tourette's. They're going to love everything about you, including including your Tourette's, right? They're gonna love that too. So,

Nicole Stark  09:24
yeah, I would say be open and honest about what you need and then be patient because it does take people time. Just like anything, you need to understand that they're going to make mistakes, especially if they have never been around someone with TLS or if they have their own things they're working through. You have to be patient and open for where they are and meet them in the middle.

Michael Leopold  09:48
Did you both tend to disclose on a first date, or was it more case by case feeling out when it makes sense to disclose?

Ben Stark  09:56
I pretty much disclosed right away. i The people can also see my I'd text from like a mile away, 

Michael Leopold  10:01
It can make a difference. Yeah, how visible or noticeable. 

Ben Stark  10:04
So for me, it's a little bit harder to hide it.

Nicole Stark  10:06
I think I would disclose, especially if I knew it was like a bad tick day, because my tics were loud, and aggressive. Those are things that need to make sure someone knows like, Hey, I'm not hitting you, because I hate you. I'm hitting you because you can't control it.

Michael Leopold  10:22
No, that makes a lot of sense. I also wanted to congratulate you both on your first child Anthony, that's really exciting. And he was born around Valentine's Day. What's the experience of being a new parent like?

Ben Stark  10:34
it's tiring!

Nicole Stark  10:36
It's crazy.

Ben Stark  10:37
It's yeah. But it's it's wonderful. I mean, he's awesome. It changes your entire outlook on life in so many amazing ways. But he's teething right now. So that is, if any parent that's listening to this that has experienced their child going through teething, they know it's torture, that's a lot of fun. But besides that, it's been a great time.

Nicole Stark  11:01
Yeah, he definitely has Ben's personality. Everyone says he looks like me. So at least he got the good of both of us. But he is the hardest job I've ever had, but the most rewarding at the same time?

Michael Leopold  11:13
Are one of you able to be at home during the day then or how's the situation work with raising the child working all of that.

Nicole Stark  11:19
So I'm just coming off of maternity leave, as of like, next week, officially. So we're lucky to live near Ben Stanley, who has been an amazing support for us. That's just we're doing a whole mixture of everything to make sure he's taken care of well.

Ben Stark  11:36
yeah, Nicole's job definitely requires her to be in five days a week. my line of work requires me to be in most days, but I do our flexibility here and there to work from home. I typically work from home one day a week, so I can watch him those days. And as Nicole said, my parents have close by and we live in an area where there are a lot of options for daycare with sort of going to be like a Tribrid approach of myself, my family and daycare, they like they say it takes a village to raise a child. So that's truly what it is.

Michael Leopold  12:11
Really does. And then without crying too much. I'm sure you've thought about this aspect of it with like Tourette's being genetic and the probability of your kid having Tourette. I'm sure everybody asks you this. Have you thought about that? And any kind of preparations you'd make to support your support? Anthony? If and when that time comes?

Nicole Stark  12:29
The thing that no, no one really thinks about until you're pregnant and having a baby is you need a pediatrician. And and I did a meet and greet with our pediatrician. And one of the questions I had was, what is your relationship like with specialists? And do you have referrals and connections to get help, mainly for a neurologist? Because it's probably something that we will need down the road, no matter if it's ADHD, anxiety, Tourette, whatever it is. So that was something I was looking for in a pediatrician, someone who would report that knowing our histories,

Michael Leopold  13:07
were they able to connect you with like, you know, neuro pediatrician or some resources so that when that time comes, or if the time comes, you have that support? Or did you find that was like really difficult to navigate? 

Nicole Stark  13:19
No, they were very supportive of us. He wasn't born yet. So it was, well, let's wait and see. And we still are in the wait and see, we don't want to jump too soon. But down the road!

Michael Leopold  13:29
it is awesome. You guys are being proactive. I mean, so many people are reactive. And I think that's one thing Anthony has the privilege of is is parents that get it and parents that if Anthony ever shows signs of any of this stuff, you both get it and we'll be doing everything you can to provide that support. I mean, we know that early intervention is so critical. I think Anthony is really in a great place for success. Just having you to as parents, thinking back to your own upbringing, and parents and everything growing up with TMS and CO occurring conditions, what have you learned that you might do the same as your parents or differently than your parents did it when it comes to raising a kid with with some of these challenges?

Ben Stark  14:09
For my parents, I think they did a overall very good job, they eventually figured out what the issue was, and got me the treatment I needed. I think we live in a day and age where it's much easier to find the resources that you need because of technology. Whereas the only way my parents found doctors for me was really just through word of mouth from family and friends. And they needed to know that family and friend like if they had someone else in their family that had Tourette's or something similar. So I think that was definitely a challenge that they went through. I think another thing as well as again, they never experienced Tourette's. I mean, I was displaying symptoms from a very young age, probably one or two. And I wasn't diagnosed until I was almost 10. They knew there was something they just didn't know What? And I think that's something that I think if we started to see signs of, it could be anything, right? Like Anthony could end up with something totally unrelated to Tourette's, right? I think most folks have some sort of medical condition these days. I think just being really aware of the signs and making sure that you're just, again, gone to the doctor is one of the pediatricians bringing up questions. And, and sometimes doctors make mistakes, too, right? So if you're not getting the answers, or the resources that you feel like you need from your doctor, then definitely be ready and quick to jump to another doctor get another opinion.

Nicole Stark  15:38
Yeah, I was diagnosed so late that it was a lot different. I was diagnosed at 14. My parents, they really were kind of like blindsided, because it just popped up in nowhere. But one thing that I think Ben's parents did very well, because they want a more holistic approach eventually. And I think, you know, knowing that, in that background, Ben and I are more open to holistic approaches before jumping right into like, heavy duty medicine. But we're also not those people who will never give medicine, if it's needed, versus like, let's just start there. So I think that's one approach that I would like to pull from Ben's upbringing in his diagnosis is going that more holistic approach first

Michael Leopold  16:23
makes a lot of sense. What advice do each of you have for adults, and especially young adults with TS and CO occurring conditions?

Ben Stark  16:31
Just in general, or on a specific? 

Michael Leopold  16:33
you can pick whatever you want? Yeah, I know, there's always a lot because I like to ask everyone I speak with that question. And I'm curious to hear what you have to say on that. 

Ben Stark  16:40
you know, I could give advice on 1001 things, I definitely have a few dad jokes in your back pocket. Because they are funny. Don't let anyone tell you otherwise. I'll do it. I guess from like, just an overall life perspective is just know who you are, know your strengths and weaknesses. And understand that you will always have strengths and weaknesses and do your best to continue to work on your strengths, continue to work on your weaknesses, or if it's so weak to say, forget it, I'll just focus on my strengths, right, you could do that. So just be the best version of yourself and be kind and caring to other people. Because I found that over the years, I'm 30. Now. So I found that people that I was nice to, let's say 10 years ago that I maybe I haven't seen in a long time around during a long time that I'll reconnect them later down the road. And and they remember that. And it's always nice to have those open lines of communication with folks because you just never know what can come from that.

Nicole Stark  17:37
And I'll take it more from like a dating perspective. Try to find the yin to your Yang, someone who you can bounce off of imbalance. Ben is the outspoken one, the social one. I am the introvert. But on the flip side, I can keep things organized in the house while he's out socializing. So you got to find that balance with your partner. Especially like today. Ben's like, oh, we have something going on. I'm like, Okay, well, this is along for the ride. I'll do every move. Yeah.

Ben Stark  18:10
Yeah. So Hey, Nicole, Mike texted me and asked if we could hop on a podcast. So I told them Yeah, and it's tomorrow and it's at eight. So we're doing it. She was like, Okay,

Michael Leopold  18:21
You guys, we're wonderful with like, very short notice. I appreciate that. One thing we haven't talked about is like bullying. I think a big theme here is understanding yourself. And also loving who you are yourself. Having that strong sense of like, This is who I am, and Tourette is not a doesn't diminish who I am as a person at all. Tourette's is an asset and makes me part of who I am. Makes me better. I wonder if you if either of you want to comment on any expenses you've had with, you know, times where like self esteem was low, or there was bullying, like maybe some of those earlier years and kind of how you advice you give to other people that might be facing that because that is something a lot of people in our community do face, especially when they're younger?

Ben Stark  19:00
Yeah, I think for me, definitely one of my texts were really, really bad. Like when I was in middle school, I had a really hard time making friends. I was taking a ton of medication. So I was so like, doped up that I just had no clue what was going on. Like I barely remember those years. But I definitely remember getting bullied like those are one of the few things and it sucks, right? Like nobody, nobody wants that. When you're younger. I think it's more challenging. So it's I think it's really important for folks that are older, like like us that have gone through it to just make sure that younger folks who are now starting to go through middle school or high school or whatever it is making sure that they have the resources and support that they need. If we see bullying, making sure that we're addressing it right away and not just brushing it off is like oh, it's just children playing or they're just kids joking around because kids can be mean, right? We all know that. When I was in those years myself the best resource that I had at that time where I I had a few friends, but they were like the closest relationships that I had. So there's always going to be friends that will know and support you, no matter what. And they're going to be the ones that are going to laugh at you when you have that really funny, long, exaggerated tic. And they're not, then they're doing it because they love you. Right? They're laughing with you not Not, not at you. Like I said, I don't think I really experienced it anymore. As an adult. If someone is trying to bully me now, it's not because of my threats. It's because they have some other problem. And I just feel sorry for them. So it's no longer an issue.

Nicole Stark  20:30
And I think my approach is something similar to what Ben just said, I always took it as if they're laughing with me, because I always thought my tics were funny. So I never took it as they were laughing at me kind of just joined in the party with them like, oh, yeah, that is really funny that I yell, blah, blah, blah, or I do XYZ. So I think owning it and just being yourself and accepting yourself is a huge part in overcoming some of that bullying and being able to stand up for yourself.

Michael Leopold  20:59
That's awesome. I think someone the NJ CTS community may love to hear the story about how you two met. Would one or both of you like to talk about that?

Ben Stark  21:07
Yeah, I mean, it was really all my fault. So no, I'll tell this one. People who know and just CTS know that and a CTS, oh, send plans every year, the Tim Howard Leadership Academy, which is an academy for young adults to go in a safe place at Rutgers University for I believe it's four or five days, learn about themselves about transitioning from high school into college and into the real world while having Tourette's. I was volunteering as one of the coach mentor leaders. And Nicole was an intern with NJ CTS at the time. And I remember she couldn't make it the first night for one reason or another. They were all saying Nicole is going to be here tomorrow when I ran. I was like, Okay, I sort of dismissed it. No big deal. And she shows up the next day. And it was like, Ah, alright, this girl is pretty good luck in yet. So she 100% Caught me staring at her for sure. And knew and was like, Yeah, who is this guy? Right? So she had to go hang up fliers, I think to announce like dinner time or the schedules. And someone was like, Oh, who wants to go in the column and my hand was like, through the roof. And I was like, Oh, I'll go I'll keep her company. We walked around the halls and I found out she went to Iowa and I was going to Pace University, two universities very close to each other. chatted a little bit. She wasn't too impressed. I was trying to flirt. She was not impressed, though, I'll say. But you know, all the coaches and interns exchanged numbers, I may or may not have taken her number off of the sheet. But that that will leave a mystery. And we were chatting after that. She warmed up to me eventually, right? We were talking about my sort of strong arm to hang out with me and spend some time with me. And after that, I think she came around and realize that I'm harmless, right? So friendly teddy bear.

Nicole Stark  22:55
Yeah, I hope it didn't hurt him that his parents had just gotten a puppy. So he was like, Oh, you want to come on over and see the puppy. And I was like, I'm a sucker for dogs. So sure!

Michael Leopold  23:04
Aren't we all. Yeah. That's great. And then Nicole, what was the story like, from your perspective,

Nicole Stark  23:09
we did me at the Academy. And Ben was very persistent. He did try pickup line here and there when we were hanging up those flyers and I just was not impressed. But one thing about me is I like to fidget. And especially when my texts were bad, I would constantly be fidgeting. One of the easiest things for me to fidget with was a sugar packet. It's easy to access when you're out there small enough that no one really knows what you're doing. And you know, if it breaks, there is a million to replace it and no one's going to pry over some spilled sugar on the floor. So Ben would ever so slightly slide me a few sugar packets every now and then. And I was like, Okay, well, I guess he's not that bad. If you realize this is what I need to calm down. And then once we left the academy, he like he said he's strong armed me. He would text me. Hey, what are you doing today? Oh, I'm working. Okay, how about tomorrow? Oh, I'm working. Okay, how about the next day? I'm off. Great. We're hanging out on a hike because you didn't even give me a chance to say like now he very well strong that was me into this. But I mean, we we've been together. I don't even want to count. We've been through three academies, I think together and now we have our son. That's amazing. You're right. I don't want to know.

Michael Leopold  24:28
Yeah. Have either of you ever picked up a tick from the other?

Ben Stark  24:32
I don't think that's actually ever happened. Really? No

Michael Leopold  24:34
kid no tick contagion between you two. It might

Nicole Stark  24:37
have happened like once like I picked up one of his but it wasn't very common. Yeah, I can't remember.

Michael Leopold  24:43
You also both have pretty different tics. I feel like I'm different just experiences with Ts in general. Like you said, getting Yang you both balance each other there too. If you could go back and tell your 18 year old selves any piece of advice, what would it be?

Ben Stark  24:59
Don't be an idiot.

Ben Stark  25:01
I was quick on that one! hahaha

Nicole Stark  25:05
just find who you are and stick with it.

Ben Stark  25:08
I think I'm gonna commit to mine there, Mike.

Michael Leopold  25:10
Okay. It was good too. It was good too. Having an 18 year old? man. A lot of 18 year olds need to hear that, I think. Yeah,

Nicole Stark  25:18
with social media and everything today. Yeah, like think first and that act,

Ben Stark  25:22
that definitely does not happen when you're 18. You act first and think 10 years later? No, but in all seriousness, Mike, I would tell myself, look, you're gonna make mistakes. And when you do make those mistakes, learn from them, don't do it again, and come out as a better and stronger person.

Michael Leopold  25:40
Okay. Well, thank both of you so much for being here. And really appreciate all your thoughts on this topic, and hope you have a wonderful evening.

Ben Stark  25:47
Thanks, Mike. Great to see you. As always, thank you so much for having us. This was fun.

Michael Leopold  25:53
Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment