Dating with Progressive MS

Ardra Shephard:
I'm Ardra Shephard. And this is Tripping on Air, a place to talk shit about what it's like to have MS. Normally, I like to make everything about me, but MS also affects the people we love. So weighing in from the partner perspective is Alex Hajjar. My friend whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS, or you love someone who does, we want to connect with you.

Ardra Shephard:
Alex, I am super excited about today's guest. Darcy is someone I've known since grade seven. We reconnected in our 20s, when we were both diagnosed with MS. She was 20. I was 23. Her MS has always been two steps ahead of mine. So when people ask me who my MS role models are, it's really been Darcy for me. She's just been the one to show me what's coming and knowing that Darcy can handle it is really the reassurance that I've needed to know that I can handle it too.

Alex Hajjar:
That's so cool. Obviously, Darcy, it's great to meet you. Is it fair to say it's nice to meet the canaries [inaudible 00:01:13] in coalmine.

Ardra Shephard:
I feel like that's a really gross amount of pressure to put on Darcy. Please just keep going Darcy so that I know I can handle it too.

Darcy Zelinski:
Yeah.

Ardra Shephard:
But really the reason why I wanted to have Darcy on this show today is because she is a rom-com waiting to be made. This girl married her high school sweetheart at 25. Her marriage lasted 10 years before... She will be the one to tell you that MS was a major factor in that, but she never stopped looking for her prince charming. And Darcy is here today to talk to us about the good, the bad, and the ugly of dating with progressive MS. How freaking hard it is, but also help ultimately rewarding it can be. Darcy, welcome to the show.

Darcy Zelinski:
Hi, guys. It is so great to be here.

Ardra Shephard:
Are you ready to dish in public about your love life?

Darcy Zelinski:
You bet. I am. I went through it. So I'm going to dish it.

Alex Hajjar:
We want all the dirty details too, because we are far removed from the dating world.

Ardra Shephard:
Yes, you own that story. That's the thing, right? Dating was totally different back in the day when, I mean, you dated your high school sweetheart, and then married him. You reentered the dating world when you were 35, a totally new dating environment. When online dating didn't exist before then, and now you're going out into this big, bad, scary dating world. And you've also got progressive MS. What was that like?

Darcy Zelinski:
My gosh, it was scary. It was absolutely scary. Looking back though. I think I was pretty fearless about it. I just did it.

Alex Hajjar:
So, I mean, reentering the dating or even saying that scares the crap out of me because like Ardra said, "It's a totally different landscape." I mean, I got together with my partner before any apps really took off or smartphone took off. So that is super scary, but re-entering the dating world with progressive MS. And I guess you were already using a wheelchair at the time.

Darcy Zelinski:
I was.

Alex Hajjar:
So can you talk about sharing your diagnosis? Do you do that on a dating profile?

Darcy Zelinski:
Yeah, so I had two approaches, really. I think when I was at the very beginning, I was reluctant to share the detail. I think I was thinking who would date me for real? I don't think I hid it, but I don't think my pictures were clear. Of course. I didn't show up at the date. Like, "Ah, look at me, surprise. I have a wheelchair."

Darcy Zelinski:
I let them know before, but as the dates went on, relationships happened, I had a second approach and it actually turned out to be the best one. I was open. I was transparent and I figured if I'm going to find my person, my person's going to be okay with everything and is going to be okay with dating someone in a wheelchair.

Ardra Shephard:
Which yeah, that's great. But Darcy, isn't it true that there are some weirdos and even fetishists out there. How did you weed out the creepers by putting yourself out there in this totally vulnerable state?

Darcy Zelinski:
You know what? And it is completely vulnerable. Fortunately, I didn't have a crazy experience with fetishists, but I mean, I had my fair share of weirdos. Anybody would, right? Anybody would able-bodied in the online world, but when those flags went up and the weirdo sensor came in, I was out because I figured this isn't going to go anywhere.

Alex Hajjar:
What is a big red flag for you? For what raises the weirdo flag?

Darcy Zelinski:
A big rag flag? Oh my God. When they use the word cripple, but when they're obviously uncomfortable.

Alex Hajjar:
I didn't know people still use that word to be honest.

Darcy Zelinski:
Yeah, yeah. That happened, that happened. When you just can sense, but you can sense that they're uncomfortable rolling up to the dinner table at the restaurant. You can sense they're extremely uncomfortable. It's a red flag and yeah. You know just naturally.

Ardra Shephard:
I mean it's got to be-

Darcy Zelinski:
The weirdos are obvious.

Ardra Shephard:
It's got to be hard because if you don't know somebody with a disability or a wheelchair user, I mean, there is this a bit of a learning curve and maybe a bit of nervousness. And I can imagine that it's fair to expect that there's a bit of a learning curve, but I mean, I guess we're talking about weeding out creepers that you would have to weed out again, regardless of disability. That's something you would have a sense for. I would imagine.

Darcy Zelinski:
Yeah, yeah. I think it's just a sense. You can sense how they're coping with it and if they're going to get better, if their learning curve is going to actually improve a couple dates, if it's going to be too much for them.

Ardra Shephard:
Even before we get to the dates, can you talk a little bit about the process of... Okay, so we talked a little bit first about when you wouldn't disclose. No, I don't even want to use the word disclose because it's not a secret you have to hide, but when you would share your diagnosis or your health status, were there times in that online dating exchange where that didn't go well before you even got to that first date?

Darcy Zelinski:
Oh yeah. I can remember one clearly. And it was so early on. I can barely remember it. I shared it. And I think the words were, that's a deal breaker and I don't think I was prepared for it. I don't think I had, and I thought anybody would ever say that to me. So that threw me back for a couple months. I was scared, but they have every right to say that. Of course, they do. If they can't deal with it, then it was okay that he said that, right?

Ardra Shephard:
I think that is a really interesting point that not everyone can roll with MS. And that's okay. We all have our own deal breakers.

Alex Hajjar:
Does it get... I don't know. Maybe it's a weird question, but does it get easier to get over that confrontation?

Darcy Zelinski:
Of course it does because if they can't handle it, frankly, I have enough to deal within my life every day, I don't have the energy to convince them that I'm worth it, so they don't stay in my life if they feel that way.

Ardra Shephard:
Which is awesome. But what do you tell yourself, Darcy, to not let those kind of interactions get to you?

Darcy Zelinski:
I tell myself just that I don't need to convince anybody of my worth and for the people that are so supportive in my life, they're the people to focus on.

Ardra Shephard:
You just know you're a general badass and I love that about you.

Alex Hajjar:
Yeah. I think that's super cool as well, but I want to ask, what advice do you have for partners who want to support someone with MS or anyone contemplating dating someone with MS. Maybe they've met somebody and they don't know what to do, but they want to keep dating.

Darcy Zelinski:
Well, my advice is if that's what they want, they need to be really good at communication. And if they're not good at it, get good at it because it's extremely important. MS is a monster and you're going to have good days and you're going to have bad days. And the communication is the most important thing. Just knowing somebody's listening, makes the suffering culpable, the loneliness... Just being able to communicate.

Ardra Shephard:
So I think this is something Alex and I have talked about in the past is, it's a learning curve for both people involved, right? The person with MS and the partner. And just because we are the ones with MS. Things are still changing all the time. And we're also figuring out as we go. And I think that team approach of thinking this relationship has MS. Instead of this person has MS and it's their problem. Would you agree Darcy that's the best approach?

Darcy Zelinski:
Well, I think that it's also patience. So the person with MS needs to be patient, knowing that your partner is also trying to understand. And again, as long as you're communicating openly, you can get through it together rather than guessing how the person's feeling. It's difficult on both ends. It's going to always be difficult.

Ardra Shephard:
Yeah, no, I think instead of thinking of it as this half of the relationship has MS. And it's their problem. It's more like this relationship has MS and we approach it as a team. So I feel like with my partner, he can handle X, Y, Z, and I'll take care of the brain damage.

Darcy Zelinski:
This is where Bobby, my partner would jump in and say, "Absolutely, we are a team." And you have to be a team or else you're not going to get through the hurdles together.

Ardra Shephard:
Yeah. I'd love that approach. And it's like, how do you... I don't know. Yeah, I don't know how we communicate that's the way to go? And that it's worth it. Every relationship has a series of challenges. And MS, in this case is one of them, but you're worth it. I'm worth it. Nicole Alex's partner is worth it.

Darcy Zelinski:
Absolutely. If you're not a team it's not going to work. He often says to me, "I'll say something about my MS." And he'll say, "We are dealing with this." And unless you're a we, I don't think it can work.

Ardra Shephard:
Okay. I haven't met Bobby yet, but I'm also falling in love with him. I love that.

Alex Hajjar:
Yeah. I feel like he knows more than I do. We use code words for some things. We use code words, that's one of our thing for communication. So one thing is where it takes a while for Nicole to generate the language that she's trying to get out. And so she'll just say, "I'm loading, I'm loading or something like that or processing." And so-

Darcy Zelinski:
I love that.

Alex Hajjar:
... it may not be obvious to other people on the outside, but yeah, right? It's quite good. It works.

Darcy Zelinski:
I'm going to use that, Alex. I am.

Alex Hajjar:
Cool.

Ardra Shephard:
Our secret code is more, is a P scale, right? If we're in the car and I needed the bathroom.

Darcy Zelinski:
We have that too.

Ardra Shephard:
If it's a three, that's keep an eye out for the next-

Darcy Zelinski:
Absolutely we do.

Ardra Shephard:
Tiho if it's a seven.

Darcy Zelinski:
Yeah. That's hilarious.

Ardra Shephard:
Yeah, he knows. It's great.

Alex Hajjar:
Sorry. I have one more question. I'm just going to butt in with this question and then the floor is open, but I wanted to know, because we're talking about dating and getting back into the game if you can call it that. But what is the biggest misconception people have about dating somebody with multiple sclerosis?

Darcy Zelinski:
For me, there's a few, I think in terms of dating, I think there's a huge misconception with females. I think that a lot of people assumed I wasn't a sexual being somehow my body was different just because I'm in a wheelchair. I think that was one thing. It's funny, because after so many dates, I wanted to start it with, "Hi, nice to meet you." Everything works, but it didn't really go well that way. I think another misconception is that-

Ardra Shephard:
I mean that's such a weird thing, Darz.

Darcy Zelinski:
It is. It is. But it's true. A lot of them really skated around questions regarding anything sexual. I don't know what they thought. I don't know if they thought because I'm in a wheelchair.

Ardra Shephard:
Because this is what I'm thinking. It's like they want to date you, but they also don't think you can have sex.

Darcy Zelinski:
Yeah.

Ardra Shephard:
Right? Is that fair?

Darcy Zelinski:
It's fair. It's almost that's where the weirdos kind of were, checking off something on their list like, "Ooh, I'm going to have sex with someone in a wheelchair." I would get those feelings sometimes.

Ardra Shephard:
Yeah. I've heard that's a thing.

Darcy Zelinski:
Yep. The other misconception that I get frustrated with, is that questions are going to offend me. Somehow anything they ask, they would skate around it. I would rather be asked the questions. If you're curious about something, ask me rather than come up with something in your mind, that's false. I don't know. Maybe I'm just I-

Ardra Shephard:
Okay. But can you give us an example?

Darcy Zelinski:
Just that, just the sex example, right? When we would finally get to talking about it, they would say things like, "Oh, I didn't think it would work."

Ardra Shephard:
And then it's so are you like, "Why are you here? Are you in this because you want a platonic friendship or right?"

Darcy Zelinski:
I get it. If they wonder if I can have sensation in my limbs. That's a fair question. Just ask it and I'll give you an answer.

Ardra Shephard:
So your advice is-

Darcy Zelinski:
I just don't know why some people fear.

Ardra Shephard:
I mean, I think we've probably been conditioned to be delicate, right? And maybe not be offensive, but you're saying just say what you mean, be clear.

Darcy Zelinski:
Say what you mean, ask what you're wondering. Somehow that offends me. By thinking, it's going to offend me. I don't know. I just like it to be laid out.

Ardra Shephard:
Yeah, no, I get it. Yeah. Right? Yeah.

Alex Hajjar:
It seems like-

Ardra Shephard:
Don't make assumptions.

Alex Hajjar:
It seems like one of those things we talked about before, where if someone wants to know how the person with MS is doing, they'll ask the partner, how are they doing? Just ask them, just ask them, just ask them if everything works, just ask them if you're good to go, just ask them straight up. Like you would any other partner, but it is true.

Alex Hajjar:
I think we are conditioned or it's inherent to dance around the idea where it's like, maybe it's a North American thing. I feel like when I was in Germany, it was people just ask you really direct questions and it's not offensive. It's culturally normal to just be super direct. But yeah, here, it's you just, yeah, you do this dance and it's very awkward.

Darcy Zelinski:
Well, I need to go to Germany.

Alex Hajjar:
Yeah, maybe that's what it is.

Ardra Shephard:
No, you don't. Because you found Bob, you found Bob at your dancing.

Darcy Zelinski:
I totally agree.

Ardra Shephard:
On the other hand, I feel like we are super comfortable about asking weird questions about your job. Would you do how much money do you make that kind of stuff never feels off limits, but-

Darcy Zelinski:
Yeah.

Ardra Shephard:
Yeah. So just don't be weird. That's your advice.

Darcy Zelinski:
Yeah, don't be weird.

Ardra Shephard:
Darcy. Okay. I want to get into, you have found your happily ever after, but you had to kiss some frogs to get there. Can you tell us about a time when someone couldn't roll with MS?

Darcy Zelinski:
I can. And this one still, when I think about I was dating a guy and I think we were three or four months into the relationship. So you'd think he would've already known my limitations. We were at a restaurant. We were having dinner. I think we might have had a few too many drinks. I went into the washroom and unfortunately I had a fall. So my phone was close enough and I was able to text him and he was able to get the help I needed.

Darcy Zelinski:
And I got out of the bathroom and when I was faced with him, I got a tongue lashing. He said, "I have too much in my life to deal with this. And I have an autistic child." And I'm like, "Whoa, I guess he didn't assume, he didn't think this might happen. He didn't think it was a possibility." But the ride home was uncomfortable. And the relationship didn't last.

Ardra Shephard:
Thank you for sharing that story Darcy. I can't imagine. I think that's such a vulnerable place to be in first of all. Physically on the floor of a public washroom and to need that help and to be made to feel like it's just so, so shitty. And I am so grateful to you for sharing this story because that could be the end for a lot of people who could say this is too much. I'm too much, but it wasn't for you.

Ardra Shephard:
You kept going and you somehow still had this faith that you could find somebody out there who was worth it. And I want to talk to you about staying in relationships that are perhaps toxic or not healthy, or maybe staying in them too long. And the importance of feeling like you don't have to settle. You have a progressive illness, a disability. Can you talk to us about how you knew that you didn't have to settle for someone?

Darcy Zelinski:
I actually don't know how to put it into words. It was almost just an inner knowing that it wasn't the end that he was out there and it was a not... Don't let anything get you down. There's a lid for every pot I think. And I think that it's not to say that it's not hard, right? Sorry. I'm getting off. Sorry, Ardra.

Ardra Shephard:
No, you're not at all. I think of dating. I haven't dated in a long time, but I think of it interviewing for a job, you have to put yourself out there. You have to do a lot of screening. It's a lot of work there. It's really maybe one of the most important searches.

Darcy Zelinski:
Absolutely.

Ardra Shephard:
Yeah.

Darcy Zelinski:
If you want to find the person you want to be with, you have to do the work. It's not fun. It never was fun. In fact, looking back on it makes me want to puke.

Ardra Shephard:
Statistically is harder work for people with chronic illnesses. We know that divorce rates are higher. If you have multiple sclerosis, we know that instances of partner violence are also higher for people with disabilities like MS. And so what is your advice to people who like you want to find their happily ever after? What's your advice?

Darcy Zelinski:
For those that are wanting to find it? You have to not be afraid. You have to know that you will find it. You might not know the path, it's going to take and you might not know the steps, but you have to have the faith and you have to put the work in and you're going to date people that it doesn't work out with. If you want to really, really find that person you can't give up.

Ardra Shephard:
I want to talk also Darcy, because I know you and I've known this path, you kissed a lot of frogs. You kissed one really bad frog, and then you took a break. Can you talk about that period and how meaningful that was and how that led you into this happily ever after relationship that you find yourself in now?

Darcy Zelinski:
Yeah, I was with a particularly, let's call it a bad frog and I-

Ardra Shephard:
Wardy frog?

Darcy Zelinski:
Yeah, yeah. Yeah. And it was a bad situation and I don't know how I got there, but I got there and luckily I was able to get out of that relationship. But what that did was it put me on pause. I think I was on pause for almost a year and I needed that pause. And I think sometimes that's the important part of dating is that if you've got to a point where you become cynical and you're hopeless, you need to go back to finding yourself.

Darcy Zelinski:
And you need to be good with being okay by yourself for a while, because eventually you'll be okay. And then when you reenter into the dating world, you're at a place where you are stronger internally and you will have a better chance of finding the person you're looking for rather than settling for that frog that I settled for.

Ardra Shephard:
I think being able to be on your own is so important and it sounds like that was a very empowering experience for you.

Darcy Zelinski:
It was so empowering for me. And I think that's why I was ready when Bobby was ready, we were both ready.

Ardra Shephard:
And the other thing is you were not looking for a partner to look after you or a partner to fix you.

Darcy Zelinski:
Not at all.

Ardra Shephard:
Just because you have exactly, right? You have MS. You have disability, you need help with certain things, but you were able to resource those things on your own. You were not looking for a partner to fix you or heal you or any of those things. And I think in any relationship that's so key is knowing yourself and all. Yeah. Does that make sense? Am I blabbering on?

Darcy Zelinski:
Yeah, yeah. I think that was actually one of the things that drew Bobby to me was, he was so amazed by how I got around on a daily basis. And I had sourced out the help that I needed to take care of me personally. And while he's a huge help to me, I think he was amazed by that empowerment too.

Ardra Shephard:
I think that's sexy. And I feel even in my own relationship, my partner helps me so much, but I need him to know. And I need myself to know that I'm in this relationship because I want to be. And not because I have to be.

Alex Hajjar:
Yeah. And I think independence is an attractive quality, right?

Darcy Zelinski:
Absolutely, absolutely.

Alex Hajjar:
You already have a lot of stuff going on. And it is, I think for people who are not really well-versed in chronic illness and living with a disability, it's surprising, but it's also very impressive. So it is good. I can see how he could be drawn in that way because independence is sexy, as you said. So-

Ardra Shephard:
I just want to clarify that independence does not mean that you don't need help. Independence some sometimes means asking for help and knowing where to find the help and having the grace to accept that help and not letting yourself feel like a burden because we do need help. And I think sometimes we hold independence as this high standard and it's not possible for all of us to have that, but I think it's more about just having your shit together.

Darcy Zelinski:
Absolutely.

Ardra Shephard:
Darz, and not feeling like you didn't need someone to complete you, you were looking for a partner.

Darcy Zelinski:
Absolutely. And I think that's when I finally accepted the fact that being a good delegator is pretty cool too. Making sure I've got the care I need for the entire day is pretty cool.

Ardra Shephard:
I love that. You are the CEO of your household, of your body.

Darcy Zelinski:
Yep, it helps majorly. It helps.

Ardra Shephard:
Darcy, I can talk to you for hours and I do talk to you for hours. Is there anything else you want listeners to know who are looking for their happily ever after, who are struggling, maybe in a relationship that doesn't work or just anything else you want to add before we wrap this up?

Darcy Zelinski:
Yeah. I want to say that if I were to look back nine years ago, when I left my marriage and think about where I was at that time, there's no way I could imagine that I would be where I am right now. But you have to believe that it's possible because it's absolutely possible.

Darcy Zelinski:
There's so many people out there, especially in this crazy online dating world. And in order to get there, you have to take that step. Even not knowing where it's going to lead you, because it's going to lead you to a wonderful place.

Ardra Shephard:
That's all there is to say, put yourself out there. You're worth it. There's a lid for your pot. And I hope you find that lid just the way Darcy did. Darcy, thank you so much for being here. I think this is such an important story.

Darcy Zelinski:
It's a very important story. And I was so happy to share it and I hope it helps at least one person I would say.

Ardra Shephard:
It absolutely will.

Darcy Zelinski:
Go for it.

Ardra Shephard:
Thank you. Wow. That was great. Alex, what did you think of Darcy?

Alex Hajjar:
Yeah. Well, Darcy is super cool. These are great stories and it's always nice to hear news stories and it's good getting the word out there. I mean, you don't hear too many stories in the mainstream about this sort of stuff and dating. Like I said, "Dating nowadays is a nightmare." I mean, I'm just assuming things I haven't dated in a long, long time, but I look at these apps and then see what my friends are doing. And I'm like, "It's so confusing."

Ardra Shephard:
On also at the same time, I don't even know how you meet anyone, not online, right? Especially in Darcy's situation, what if you were trying to meet somebody 20 years ago, what would you do? I like newspaper ads or [inaudible 00:28:40].

Darcy Zelinski:
I know, I don't even remember.

Alex Hajjar:
There used to be a time where talking to strangers was like, "Okay." I think-

Darcy Zelinski:
All I know is I'm happy.

Alex Hajjar:
Well, that's great. Yeah.

Ardra Shephard:
Yeah. Oh, you're so happy. I hope I get to meet Bobby soon. He sounds awesome.

Darcy Zelinski:
You really, really will.

Ardra Shephard:
Thanks for listening to tripping on Air. Don't forget to visit us @trippingonair.com.