Ask Elisa Podcast

PODCAST EPISODE TRANSCRIPT

It’s Ask Elisa, a podcast about dating and relationships in your late thirties, forties and older. I’m your host, Elisa Sparkman. If you like the show, please share it with your friends and visit the website to sign up for the monthly newsletter.

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Today my guest is Sara Gehrig and the topic is dating with chronic illness and chronic pain. Thank you for joining me today, Sara. Can you please introduce yourself with your age and the area where you live, your occupation? And then on Ask Elisa, we like to share something, something about ourselves that has nothing to do with, with, uh, romantic relationships.

So like a hobby, uh, something that you’re interested in or something about the way you grew up that has nothing to do with any kind of romantic relationship because we are all so much more than our love lives. Yeah. Thank you.

Thank you for having me, Elisa. Uh, my name is Sara, as you said, I am the owner of Hello Pain Peeps LLC, an online peer support, uh, for those living with chronic pain and illness. I am 46.

I live in Northern Wisconsin. Let’s see, what is something? I am a very proud mom of two young adult children. Uh, Gavin is 22, Connor is 21 and they are off in the world there.

They have launched. I’m an empty nester mom and I’m there that I’m there the proudest, uh, um, they’re what I’m the proudest of along with my, um, my business and, um, something I’m, I was thinking something that people don’t know probably about me is I’m getting back into music. I was in band when I was in high school and, um, sound music is really important to my healing and I play a Panda drum and I’m been playing it for a while and now I’m getting kind of sick of it.

So I just ordered a keyboard and I’m going to teach myself piano, I guess, keyboard first and then, then start piano lessons. That’s so cool. Yeah.

One of my friend’s moms started playing the piano, like in retirement, started taking lessons and it’s really cool. Yeah. I’m really looking forward to it.

Yeah. That’s great. I love how you, you connected that to like what you did as a kid, because sometimes when people are like, they don’t really know how to maybe access, um, joy or they don’t really know how to find a hobby they love.

And so oftentimes I, I recommend people start by thinking about what they loved doing when they were a kid. And for me, I love to sing as a kid. And so I started taking voice lessons when I was in my mid thirties and I couldn’t with somebody living with chronic pain and chronic illness.

Like I couldn’t, um, do, I really wanted to do musical theater and I felt like I couldn’t do a theater show, like that was a little too much. So I chose voice lessons and, um, I’ve gotten to a place where now I can do musical theater with a group that is like kind of low, low maintenance. They don’t take it too seriously.

I can miss rehearsals and it’s no big deal and that kind of stuff. So I found a way to make it work. And a lot of that was really trying to do, and people ask me like, how have you always done theater? I’m like, I literally did theater in high school.

And then I started again when I was, uh, 38, actually, no 39. It was like right before I turned 40. So, um, yeah, I normally share a little something about myself, but I guess I kind of did, even though I’ve shared that I love to sing and do theater on the group before.

So I’m just going to leave it at that. You reached out to me, uh, when you were researching about, um, dating stuff with, um, with Hello Pain Peeps. Can you tell us a little bit about Hello Pain Peeps? Yes. www.hellopainpeeps.com

I started Hello Pain Peeps just recently. Um, but I’ve worked in, uh, the nonprofit world, uh, in the chronic pain and illness world for a while, uh, with my own lived experience, having chronic pain and illness for a very long time. I’ve had chronic pain for most of my life, but, uh, uh, eight years ago, I had a failed spinal fusion and my whole life turned upside down.

I woke up in a new body. So I, I found peer support and it changed my whole life. It, I was at rock bottom when I found it.

And so I, I, uh, founded, uh, uh, Hello Pain Peeps, um, in August. It is a peer support, um, online platform for people to come. Um, I want them to exhale when they find Hello Pain Peeps.

It is a peer support groups. Um, I have groups almost daily. Um, there are, um, monthly groups, there are weekly groups, and, um, I have monthly guest speakers of all different things.

I have psychologists, psychiatrists, OTs, PTs, yoga therapists, dieticians. Um, I, I wanted to bring, uh, education resources. I have a blog, I have a resource page.

So it’s everything that I, I wanted when I felt like there was nothing out there for me when I was first really struggling and didn’t know where to turn. I remember when I first Googled eight years ago, chronic pain, I, there just wasn’t much, and I was being dismissed. I wasn’t heard.

I wasn’t seen. And so, um, HelloPainPeeps.com, Google it and you’ll see this website full of everything. It’s a place to be seen, heard, validated, and a place of belonging.

And it’s available on the resources page of my website, askElisapodcast.com. If anybody wants to check it out. People living with chronic pain and chronic illness tend to bump into some issues and specific, specifically unique to dating with chronic illness and chronic pain and forming romantic connections and intimate connections. There are some specific challenges that come along with, with the variety of ways people experience chronic illness, chronic conditions, chronic pain.

And today we’re going to start with you kind of sharing your story to, to help people kind of understand what that’s like. And I will likely chime in with some of my experiences as well. So a little bit more conversational and, um, yeah.

So, uh, you, where do you want to start? I will start, um, as I said, I I’ve grown up with chronic pain and illness. I want to start, I think when I eight years ago, when I woke up in this whole new body and that’s really when my chronic pain and chronic illness really started. Um, I came out, um, as a lesbian later in life, I had already been married and have children, um, but, uh, when my chronic pain and illness really started, I was actually in a relationship when I had had this, uh, spinal fusion and being in this amount of pain and now having to move forward.

This relationship I was in was not healthy. And I knew that at the time, but I knew to move forward and to heal, I had to really evaluate and do so much assessment to say, this isn’t serving me. It’s probably not serving her.

Um, we’d been in a relationship for about five and a half years to say, it’s okay. Let’s both learn from this. And, um, it’s probably time for both of us to go our separate ways and that’s okay.

And that was probably one that was really hard for me because there was so much love there, but I also had to love myself enough to say, if I keep going this way, I’m going to have more pain. Cause it was, I was tensing up and I couldn’t have any more tension in my body. And, um, so to have a breakup with having this new body, trying to navigate doctors, surgeries, procedures, and a breakup was a lot, but I couldn’t have any more stress, any more tension in my body.

And then I thought, Oh no, now if I’m going to move forward, now I have to explain. I have chronic pain. I, my day to day is always different.

How do I do this? So I first had to get right with myself. Who am I now? Can I ask how long after the procedure was your breakup? Months. It was within months because I was a whole new person.

With knowing that you needed to make a change in your relationship and that it was no longer serving you or her, but with, with so many new, new medical obstacles that must have been kind of scary to, to have that piece of your life go away. It was, but it became, there was love lost. Like I needed someone to love me and want to be there with me and to be my future.

And I know that wasn’t, that wasn’t there before I had this profound thing happen to me. And I want someone that’s going to walk beside me to be as crazy about me as I am them. And I felt that way for her and that it wasn’t reciprocal.

And, and I, we had already kind of just been, it was just kind of a fun thing when I didn’t have my kids and she, you know, and it was just kind of a fun thing. And I don’t have the luxury to have that anymore. My body didn’t work like that anymore.

I couldn’t just be the fun Sara anymore. And I couldn’t, I just couldn’t have that anymore. So it was best to say, I love you.

And it’s time for us, you to go and have your fun with your older, her children were older. She was older than me, go have that fun and find that person that’s, you can, I wasn’t her future. And so it was, I had to focus on me and I, there are times when it’s time to take a break, just to focus on you.

So you can figure out what you even do want in yourself and in a relationship. I didn’t even know who I was anymore. And that’s not time to be in a relationship.

I hear that. That’s brave, I think, especially in a, in a world where that romantic relationship is, can be seen as a comfort, but it sounds like you, you didn’t have that comfort of like, this is the person who, who wants to walk alongside me. So that makes sense.

Yeah. And I think a lot of people with chronic pain and illness, they have to first decide. Who am I? What are my interests now? They’re different.

We’re different. What are my hobbies? What are my limitations? What are my limitations? Do I have energy? Can I, do I have energy for this? And, you know, my, my injuries are from L3 through S1. That causes bladder, bowel, sexual problems.

Can I be, can I be honest about that? And so I, I really, can I get to the point where I can have these conversations and do what I want to date me? Am I mentally healthy? Am I emotionally healthy? Am I spiritually healthy? So I really, you know, wanted to get to that point and sure. I went on some apps and just dated people here and there, and those weren’t healthy. And so I really then had to like, okay, I have to take a break and get right.

Mentally. I read the greatest book. It was called what makes love, making love last or make love last by John Gottman.

And it was, it was that making really knowing myself within this new body and being able to go on a dating app to say, I have chronic pain, you know, and that’s hard because most of the time it’s like hiking. What are your hobbies? Hiking, walking, yoga. Cause I was a personal trainer, physical therapy aid and a yoga instructor.

Oh, wow. That was my, so I was that person. I was a cyclist.

I was a triathlete and now I could barely walk around the block. Yeah. I definitely noticed that on the dating apps.

There’s so, there’s so many, especially in the Pacific Northwest, like everybody loves all those outdoor physical activities. And I would have to say like, I could at this point where I’m at now, I can do more than I could do 10 years ago or like around, around 2018, I would say is where maybe I was at my, my worst in 2019. And I, I couldn’t do more than, I couldn’t basically couldn’t do a hike that had any kind of like elevation gain.

I could maybe do like an easy one to three mile hike, but I would definitely need to plan out rest time. And so many people on Pacific Northwest dating apps, like they want to go backpacking and I’m I can go camping, but I can’t carry a pack of everything I need for multiple nights. No way.

Like I could maybe do one night because you don’t need that much. If you carry all the really heavy stuff. But even then, like, I just, I would have to say, like, if I’m asked with somebody, I’m happy for you to go do that stuff.

But I can’t always join. I can’t join in on that kind of stuff. You skiing, snowboarding.

Absolutely not. Growing up, those things were never fun for me. I just said, I didn’t like them, but I realized that they were painful for me.

They were physically painful things for me to do. And I could never get into those like rigorous type sports. And I did, I did dance and swimming.

I could not do soccer, basketball, those things that like, I think I had fibromyalgia at an early age. I wasn’t diagnosed until I was in my late twenties, but everything hurt me all the time. I just thought I was a wimp, but having to be able to explain my limitations, it took some time and practice.

And also when you’re somebody with chronic pain and chronic illness, those things often change depending on where you’re at and you’re like managing your illness. So what, what kinds of ways did you navigate the, the kind of like demand of physical activities in, in dating apps and in dating? Well, what I did wrong in the beginning was I lied. I wasn’t honest.

I didn’t, not that I lied. I wasn’t honest. And because I thought I want to be the person I always have been.

And so I wouldn’t say anything. I want them to know who I am. And so I wouldn’t say anything and I would mask.

And I, you know, would meet someone and we would sit forever on a date and I would go home and pay for it. And that didn’t serve me. And then they’d say, do you want to go for a hike? And then, or let’s go for dinner, a long walk and then, or a lunch and a long walk and go shopping and then we’ll have dinner.

Yep. And I would go. And by the time we had dinner, I was having spasms, rectal cramps and whatever.

And by the time I got home for a whole week, I could barely, I would have migraines and spasms and I could barely walk. And I, then I would use my mobility aids, but I did not use them when I would see them because I just wanted, and then they, I’d be talking to them all week. I’m fine.

I’m great. I’m whatever. And I just paid for them.

And I took away from them the ability to love me and care for me. I took that away from them. But then when I finally did say to some, they’re like, Ooh, this, this isn’t going to work for me because I want to be able to play tennis with my partner.

I want to be able to do these things. So then rejection, I was rejected. And that was really hard.

But then I thought, well, they’re just not right. They’re not right for me then. And that’s what I, what I say to the people that I walk alongside and work alongside the chronic illness community and pain community.

Then they’re not for you. Right. In my, in my dating advice episodes, that’s when you’re looking for a romantic partner, it’s so specific.

It’s not the same thing as looking for a buddy. It’s not the same thing as looking for somebody you can like go and just spend an afternoon with and hang out and have a good time. Like you are looking for so much more in each person’s desire for a romantic partner, what they want, what they need.

It’s so different, but it’s so specific that if they are not interested in you romantically, I just flat out say it is not rejection. And I try to just help people reframe their mind that if somebody says you’re not their cup of tea for romantic partnership, that is not rejection. It’s like, as often, it’s like finding a cute shirt that you try on and it just doesn’t fit right.

And so you put it back and there’s nothing wrong with that shirt. It just didn’t fit you. Right.

Like, you’re not like rejecting the shirt. So I mean, it does hurt because it’s just another thing that chronic pain and illness takes from you. So it does hurt because, you know, you already don’t want to be in this body.

You want to be that person that you were before, so that it does hurt. But it is right. It has nothing to do with you.

They’re just there’s somebody else for them. There’s somebody else for you. Right.

But then I thought, okay, I just need to be completely honest, up front and say, this is, this is my, these are my limitations physically, and, you know, whatever. And I also have this caveat is, I’m not presenting you with a problem to solve. Please trust.

I’ve been doing this a long time. I know what I’m, I know how to care for it. Because it’s really hard to be like, oh, well, have you tried and have you tried and have you tried? That shuts a lot of people, that shuts me down.

And it shuts a lot of people with pain and illness because I have tried. And I, and then it, it opens up that conversation to, to be, this is what I’m looking for in a partner to be supportive. Here are my boundaries.

And I will for sure tell you if I need something, when I need something and if I need something, but I’m, I don’t, you don’t need to be fixed and I don’t need to be fixed. And another thing you said was that when you did not present yourself as a person living with these chronic conditions that you were taking away from them, the opportunity to love you for who you are. And that, that is a lovely way to put it, I think.

And also another piece in my dating advice episodes and in dating advice that I give over social media is recommending that people show up authentically so that they can be loved authentically so that they can be loved for who they truly are. If you’re misrepresenting yourself, you’re not giving yourself that opportunity to be loved for who you are, but you’re also, I hadn’t framed it that way, but you’re also taking away that, that opportunity for them to love you and know the real you who is, you know, amazing as you are. I think oftentimes I just wrote about this on the blog, my blog.

I was walking the other day and this, in my walking path, there was this itty bitty acorn and I picked it up and I thought, in this acorn is a mighty, mighty oak tree. And I thought the essence of who we are, those with pain and illness is still in there. I’m not my old career.

I’m not my car, old car. I’m not my house that I used to have, whatever. Those were things.

But who I am is still that person. I’m still everything I used to be then. I like this person a lot better.

I was lost in doing before. I was not a present person. I was not a patient person.

Now I can see, I would have never saw that little acorn. But now I am present and I’m so, I was compassionate before and kind, but now that’s the essence of who I am. I don’t want what happened to me, but it forced me to stop.

It forced me to pause. And now I can show up completely authentic and be so present in a relationship and with so much love and so deeply and more out than I was. I mean, I was out, but completely out and with full boundaries and not abandoned myself.

And my body, our bodies always tell the truth. That is, my body tells the red flags immediately. Say more about that.

I want to know what I know when I am abandoning myself to accommodate someone else’s nervous system. When we have chronic pain and illness, we know what comes our nervous system. For me, I need a calm.

I just, I need that, or I’m tense and I have more tension. My symptoms are more, my pain is more. And if I, if I am, I’m, I communicate what calms my nervous system in a relationship is consistency, connection, and communication.

That’s, that’s what I know I need. And I’m very honest with that. I don’t need you and I to be talking all day or whatever, but that’s a relationship.

It’s a healthy relationship to have good communication, consistency, and connection. But when those aren’t being met and I keep accommodating for what you need, I’m abandoning myself. I get sick every time.

And my body, our bodies will tell us when something doesn’t feel right. Every time our bodies always tell us the truth. I think that one of the gifts of living with chronic illness, chronic, I’m going to think chronic conditions because illness pain, you know, it can be different things has, has definitely given me the gift of being so in tune with my body so much more than I ever was before.

Even, but even as a kid, I knew something was wrong and I, and I made excuses for it. Like I thought I was a wimp and my family kind of made fun of me and called me a hypochondriac and stuff like that. So I, and I, but like, I’m like, I know I’m not, I know I’m not making this up.

So, but then I’d be like, but hypochondriacs, do they know they’re, do they know they’re making it up? You know? So I would sometimes spin out over that. But it’s interesting because somebody that I’m close with recently told me that like one of their aunts was a hypochondriac, but then they were like, yeah, she died of cancer and she was like really sick. And I’m like, do you, do you really think she was a hypochondriac then if she was like always sick and then died from being sick? Um, so I like kind of had all this compassion for this woman that I’d never met thinking that, you know, from the outside, well, first of all, things like that force us to want to not share, force us to feel like we can’t tell people.

And then it just was interesting to me that the story that they’d written for her was still the story that they told, even though they had new evidence. So when you use dating apps, is that the primary way that you dated? Sometimes I’ve been fortunate to meet people in the real world, but yeah, apps, I guess. Yeah.

Um, how, so did you include any of this in your profile or did you share it in the, like when you matched in with chat, how did that go? That’s a good question. Cause a lot of people wonder at what point do I share? I would share pretty quickly after chatting because it is who I am and within a, you know, that first few back and forth because they’d say, well, what do you do? And I’d say, I work with the chronic pain and illness community. Oh, that seems really rewarding.

How did you get into that? And so I’d say through lived experience. And then if, if I didn’t work in this community, I would still say, you know, because right away I wasn’t working in the chronic pain and illness community, I would say right away because I have to say, I do not like to chat. What’s your favorite color? What, you know, like that does not interest me.

Like, I don’t, I’m not a superficial, you know, what, what’s your favorite food? Like, but I don’t want to get into that. I want to know, like, what do you long for and what are, you know, those kinds of conversations. So I wouldn’t engage in that kind of conversation anyway, but.

You know, I, I, I do want to be honest now after I didn’t, cause I would say right away, like, I would out myself and say, I was in a relationship that I wasn’t honest. So I have to be honest to say, I have limitations, not only physically, but I get overwhelmed by loud noise and I can’t do a lot. And, you know, I like to be home, whether it be with someone or at their home or my home or whatever, I just have to be honest and I can’t go, go, go anymore.

It just doesn’t work for me. I do like to have fun and I’m silly and everything else, but it takes me a while to prepare. And I have to intentionally plan to go before and rest after, and there’s nothing better than sweats and a movie at home and blankets that that’s my ideal, but then they have to decide if that’s for them, you know, and I, and being a lesbian, I do have to, from now on, I will say, and you have to be out to your friends and family because that causes so much stress.

And it’s just too much. If you’re curious or whatever, I’m not interested in that, but that’s so much stress on someone with pain and illness to get into a relationship. And then, oh, by the way, I’m not ready to tell my family.

It’s just like that, that puts me back in the closet 14 years ago. And I’ve worked really hard and gone through so much pain to be this far. And I’m too old to be introduced to someone’s friend.

Yeah. Do you think that I, well, for me, like I feel more comfortable, um, even though I date men, I would feel more comfortable sharing my vulnerability and my, um, my conditions and stuff with, with women, just because women tend to be more empathetic, understanding. And have you had any kind of reactions that were, that were unkind or just like really bizarre or that really have stuck with you? Maybe I have, I’ve had some reactions that I’m like, I, I just, I have to give grace because you know how it is.

We don’t understand it. If the medical community can’t understand it, able-bodied people aren’t going to understand. So I have to allow for grace.

I’m going to try to say this so kindly because I, I just, the word grace just keeps coming to mind because they’re looking for their person as well. And it has to be because they’re disappointed. Uh-huh.

They’re disappointed too, because they want me to be something that I can, I, not me personally, but they want that person to be what they’re looking for. And it’s disappointing. I can understand that.

I guess I can understand that. And so again, going back to what we talked about before, it’s not rejection. It’s I’m not for them.

And has it stuck with me? It used to, you know, and now I just have to say, I have grace for them. They don’t understand it. I have a hard time understanding pain and illness because it changes all the time.

If doctors can understand it, how am I to, how are they to? And so I just have to keep like, yes, I have had some of the most hideous things said to me. I, at first I’m like, wow, that is very selfish to say, but how are they to understand? Right. When it changes all the time.

Yeah. I think you don’t look sick. Right.

You did something yesterday. How are you? Why can’t you do it today? I work in an office, but I’m, I only go in when I’m feeling good. I’m allowed to work from home.

I have accommodations. I’m allowed to work from home when I need to. And that’s a lot.

So when I’m in the office, people often say like, oh, you look like you’re doing so well. You look good. I’m like, well, I don’t come to the office when I don’t feel good.

So you’re only going to see me looking good enough to be in the office because that’s, that’s how I have to operate. And it gets really frustrating when people tell you, but you look good. That’s like one of the most annoying things.

And so I started saying, well, that’s because I’m pretty. Yeah. Right.

Yeah. And I’m like, pretty people can be sick too. Yeah.

That’s probably the hardest. And, um, or if someone has the goal to be like, what’s your portfolio or whatever? It’s like, I’m disabled. Like, do you know how much money I’ve spent on every healing modality? Like I’ve spent my retirement and your retirement.

So don’t, don’t even go there with me. Like, I can’t, I won’t, I can’t, I can’t with you right now. Let’s go on a trip over to Europe or Italy.

It’s like, unless you’re paying. Yeah. You know, like I can’t go on a flight that long.

Hey, and do you know my life right now? I never want to discourage people from dating, um, but just be prepared. We aren’t responsible for what other people’s reactions or what they say. That’s their business.

We have to stay in our business. Right. And I like to look at it when I, when I ask, I also like to share this.

My limitations are not, I’m pretty able-bodied where I am in my life right now. I think in a little over a year ago, um, in this town area that I live in, there’s like a little, um, boardwalk with a, a viewpoint tower. You know, you go up the like circle staircase and go to the top.

And I was on a date and I, I went up to the top and I came down and we were walking down on the boardwalk. And I said, you know what? Three years ago, I wouldn’t have been able to do that. I was just like, I, I want you to know that that’s, that’s what my life was like.

And it could become that again. Right now I’m in a place where I can go. I can go walk around town for several hours and be okay.

I’ll be pretty tired at night and maybe need a nap tomorrow. But for the most part, like I’m pretty able-bodied for most regular activities, as long as I have my rest time. I like to share this vulnerability in early dating in the, like after you match and you’re chatting and I try to look at it is, can they, can they sit with it? Can they hold space for it? Or are they either, are they going to dismiss it? Are they going to unmatch me, which is fine? Or are they going to, um, try to fix it, dismiss it, fix it, run away.

Those are kind of like the main things, or sometimes I guess dismiss and minimize can kind of look different. Um, but I do appreciate when they say something like my sister has MS. I really, it’s really nice to hear that they, that they have a love. They do have a loved one who has, has it, has something like a chronic, a chronic disease, a chronic illness, a chronic condition.

But then when they’re like, and they, they started going, they started doing this, this and that. And then they’re like asking me, what do you do? And I’m like, okay, take a step back. I’m not going to tell you my whole care routine right now.

You don’t need to know that. Um, and sometimes they just get a little too intense about it. And I’m like, I, are you, maybe you’re just eager.

You’re feeling like we have something to bond over right now. So you kind of have to like, is there ability to say yes. And in this situation, a green flag, because sometimes it might be, or is it, is there something off? And so that’s when like listening to your gut can really help that you can, you can kind of, if something makes you feel a little uncomfortable, oftentimes that’s your gut telling you there is something off about their, about their eagerness.

Maybe, maybe you’re not actually reading it and maybe your mind is kind of not digesting it, but your body’s kind of saying that maybe there’s something, something disingenuous or performative or something going on with the way that they are responding. And so even, I, I, I often recommend sharing a vulnerability early on to gauge their emotional intelligence, their emotional capacity for, for that vulnerability. Um, I did have one.

I also share that. I had, I had a really close friend of mine die really unexpectedly last summer and she was only 40. And I, I was really nervous about starting to date because she died in the summer.

And it was like, I kept putting off starting to date, even though I wanted to, because I didn’t want anyone to ask, how was your summer? Um, so then when I did start to date in October, I was like, actually, I’m just going to tell them right away, like, Hey, I’m going through this, this happened, I’m dealing with it. And just want you to know, and I did have somebody kind of like overly be overly supportive that it was weird. Like, you’re going to get through this and you’re really strong.

And I’m like, how, how do you know? Like, I don’t know you like that was, it was just really weird eagerness that in other, maybe, maybe someone else would have seen that as a green flag, but I was like, this is not an emotionally regulated response. Right. I think that’s really important.

And you didn’t know if their eyes glaze over when you’re telling them a vulnerable thing or they deflect, change the subject, or, you know, if they heard you, there’s a difference between listening. And if someone listened and they heard you, I need you to hear me. I know you’re listening, but did you hear me? And that’s really important.

And then it’s what you do with that information. Are we going to talk about it again? Are you going to bring it up in a way that’s kind and check in about it? Or are you going to send me literature about what your aunt’s cousin did? I don’t want to hear about that. But I think this is really important in a way of you can trust.

I know, like, and I, I think where people with chronic pain and illness go wrong is not communicating completely what you need and what you’re looking for in a partnership with your illness and conditions to completely say, this is what I have. This is what’s going on. I’m not looking for you to fix it or to do anything.

I’m just being very matter of fact about it with you and want to be honest with you about it. I don’t need you to tell me to take Tylenol or Skittles or whatever you think is going to fix it. I just really want to be upfront about it with you.

I actually will not tell people any of the names of the things in early dating, because I don’t want them to Google. So I’ll be like, what they’ll say, well, what’s the condition called? And I’ll say, I’m not going to share that with you, because I don’t want you to Google it. And they’re like, okay, fair enough.

Or sometimes I’ll tell people, it is like this other thing, and maybe give them something to compare it to. Or I’ll give them some of the diagnoses, like the mass cell activation disorder or syndrome, MCAS and PCOS and all the different little acronyms that they can look up to see some of the things that I have going on. My boyfriend bought me a new shirt, a souvenir shirt.

And I was like, oh, perfect. I’m doing laundry. I like, thank you.

And he’s like, it’s new. And I’m like, I have to wash new clothes, because sometimes they’ll just make me break out in hives. And I will not know why.

Like, I need to run it through my washer machine with my safe detergent. And he was like, he goes, I think that might be the nerdiest thing you said. That gives me hives.

And I was like, that was my life, man. Anything could give me hives. That didn’t give me hives yesterday, it can give me hives today.

But luckily, I just get like a small patch of hives. I don’t get like, I don’t get like head to toe, just like a little itchy patch here or there. But anyway, sometimes just sharing some of the things over, like trying to explain the big picture is easy to kind of just give a little give a little bit.

Absolutely. You realize that you needed to show up more authentically, that misrepresenting yourself was not working. And so once you started sharing about your limitations, how did how did things change? I think how things change for me is people meet me where they’re at.

And I am my full, authentic self. And they’re not trying to fix me. And we can, am I trying to say this? We can just be.

They can love me for my, you know, my limitations, my quirks, and I can do the same for them. And I have learned, I have to use my voice. And also listen to my body.

I have made mistakes, and I have to learn from them. It is not easy to be in a relationship with chronic pain or illness, and have two children. And I think sometimes, for me with pain, it’s easy for me to say, I can’t do any of it, and withdraw.

And the first person I think sometimes I’ve withdrawn from is a partner, instead of saying, I need you to, it’s easier for me to give than to receive. So I’ve had to really learn, because with pain, it’s this entity that constantly needs your attention. And I have, I work with a pain psychologist, and that has been a saving grace for me.

To be like, pain, you’re going to go over here. And these other things can have your attention too. And learn from the places where I got it wrong, forgive myself for where I’ve got it wrong.

And I am deserving of a relationship. I am deserving of receiving. And that’s been the biggest thing.

And also, listening to when my body says, Sara, you’re doing it again. And you’re abandoning yourself for someone else’s needs. My body will have heartburn.

It’ll get more headaches. It’ll have so much tension. I can’t turn my neck.

I have more fatigue. And it’s, and I just need to listen to that. After I am so honest with someone to say, this is what my nervous system needs, connection, consistency, communication.

And that doesn’t happen. I need to listen. I need to listen to myself and know that I’m deserving.

I think with people with pain, we feel like we don’t deserve things. We’re not worthy. We don’t deserve things because we have pain.

And that’s just how life is supposed to be. And it’s that pain brain wants to say so many things. And to learn to shut that off, to say, no, I am love.

I’m worthy. I’m enough just the way I am. And someone else is going to love it too.

And I only can be this authentic person, pain and all, love and all. I love very deeply. And I think I heard an episode of you to say when people are on sites or when people do want to get in a relationship, don’t be surprised when they want to speak to you.

Like, you know, when they message you, don’t be surprised. And I want to say that to people. It’s like, when you decide to get in a relationship, don’t be surprised when people are excited to want to be with you.

You know, like, I just want to say that to people, like, yeah, like, don’t be surprised like when people want to be with you, you are love, you are worthy of it. And you’re enough. And like I say, we’re more than our romantic, we’re so much more than our love lives.

We’re so much more than our conditions. We’re so much more than, than our health conditions. We have so much to offer the world.

Like we, our actions, our activities, whatever society might deem as productivity. It doesn’t like we, we might not be what people want to see in terms of what is what they think is a contribution to society. But there is so much that people who are not able to work in this, this economy that we have.

And there’s so much that everybody has to offer the world as their authentic self that somebody, yeah, don’t, don’t be surprised when somebody wants to know more about you. Don’t be surprised when someone wants to, to, to say, Hey, and ask you questions and get to know you. And when you are maybe not used to that kind of attention or that kind of approach, it can feel maybe questionable or like, what, what are they, what are their intentions? And, and sometimes you gotta be like, wait a minute, I’m pretty cool.

I’ve got a lot to offer another person. And also to remind yourself, you deserve, you deserve it for yourself to be one, to also reach out to people and put in that effort and show that interest when you are interested in like somebody, because sometimes when, when you are somebody who’s dealt with all of the, the heaviness that comes with living with chronic illness and chronic conditions, chronic pain, it might be hard for, for you to actually pursue somebody on a dating app as well. So not, and maybe not out necessarily out of unworthiness, but maybe out of just lack of practice, because maybe you dating apps are actually pretty amazing for people who, who live with chronic illness and chronic pain.

Like, I can’t, I don’t want to go out to, um, like going out to an event, a festival, but stuff, things like that, places where you might meet people. That’s really hard. Dating apps are actually an incredible tool for people who are, are not able to put in the time, the energy, the effort into going out and like joining a class or joining a club and that kind of stuff.

Because one of the things that I tell people when I try to help them understand, um, it’s like, I’m constantly managing a very strict budget, but the budget is not anything to do with money. It’s my, my energy and my, you know, like a lot of it’s like spoons, which is one of the ways that people kind of explained it. The spoon theory is that you just like every morning you wake up with so many spoons and every time you do something, you lose a spoon.

And so some people are wake up with less spoons and some people wake up with more spoons. And so that’s one way that people can think of it as like a budget, the spoon theory. And I personally love dating apps for the accessibility, uh, and being able to connect and communicate.

And yeah, there’s a lot of bullshit on the dating apps, but there’s also so, so much potential there. If we can continue to show up authentically and also learn how to set boundaries for, for what we will and won’t accept in terms of other people’s behaviors, because we can’t control how the other people behave, but we can control ourselves. And so that’s why I’m a proponent of like, learn, like figuring out what boundaries you need to set when you’re using a dating app.

And I think one of the traps people fall into is like, you have to be giving people your time and energy via a dating app. And like, you have to give people a chance and give people a try. But, but you don’t actually, like if somebody says something that, that is a little bit off and it makes you uncomfortable, you can end that relationship and you don’t owe them your time and energy.

If you don’t feel like that, they’re a good connection for you. You don’t owe them anything. And so sometimes if you are somebody who maybe is worried that you are not going to find your somebody, you might be more inclined to hang on to some of those connections without recognizing that maybe they’re not the right one for you.

So sometimes we need to work on our ability to say no thanks when you’re somebody who really is just really wanting, wanting it to happen. That can be really difficult, I think, especially for women who are oftentimes more conditioned to let things slide. I think another, besides the apps for people in pain, if you really want to meet people also, there’s so many options online.

I mean, join support groups for people with chronic pain, Facebook groups. There are so many groups. There are so many people with chronic pain and illness that belong to so many of their hobbies and interest groups.

Put it out there that you’re, that you’re looking to date someone in those, if you’re a coloring group or a knitting group or whatever group you’re in, put it out there. Say that you’re looking for someone. There’s so many different things.

If you’re off put by the apps, join some of, you know, say when you’re in your coloring group, I mean, there’s some, I’m just thinking of the different groups that the people in my support groups are in. Say that you’re dating, put your email and your name on the zoom. You know, I think there’s so many different ways and it’s all online too.

So yeah, I think that a lot of times too, people are embarrassed if they’re dating and that, that holds us back. And that, that’s part of what can stop people from taking that approach to be the pursuer. You know, I think that there’s something really empowering about being the pursuer.

Sometimes this is not super related to chronic pain stuff, but like lately I’ve been thinking a lot about this idea of how people keep saying, I see it on social media because of my, what I do with this podcast, a lot, all my social media is basically the algorithms are around dating and relationships. And what people are always saying is I want to find my person and, or my forever person. And for whoever meets somebody and that’s the one person that they stay with forever and they’re happy and it’s healthy and they wouldn’t shoot.

They wouldn’t want it any other way. That’s great. But I think for the majority of people, you end up having multiple, multiple persons throughout your life.

And I wish that was more normalized. I feel like people are set up this idea of you have one person forever. It’s just not accurate to how real life is.

And, you know, because unfortunately, you know, people might pass away or you, you drastically change and grow and maybe you end up falling out of love, but also like the case of your, some of your relationships where it was like, this is just something that has run its course and it’s time to end, or we want different things. And that’s been the case for me. And it’s more like we’re two people who were able to see that, that we would be better off splitting up, even though we probably would have been perfectly fine and in love sticking together too.

And that it’s not a failure. It’s not a failure. I think that’s the biggest thing.

And Esther Perel, the amazing psychologist, she has this great saying, and there’s many people that you can make a love story with, but there’s not a lot of people you can make a life story with. You’ll make a love story with many people in your life. I’ve made that.

I’ve made a lot of love stories. And I will carry that with me forever. But there’s not a lot of people.

And I like that because it goes to exactly what you’re saying. Just because they came and went, doesn’t take away what is real is the love that we shared. That is always true.

But maybe there’s not a lot of people that you make life stories with. Yeah. I really love that.

I do too. I saw a post on threads where somebody was kind of saying that they’ve, they’ve been in love many times and they just don’t know if they can do it again because they haven’t found their person. And I commented like being able to experience new love multiple time is such a gift.

Like enjoy it. I went after my divorce when I got into a new relationship and it was just like, it was so nourishing to me to be in this new relationship. I savored every moment of it.

I realized it was because I never, I thought that I was married and going to be with that person forever. I never thought I would get to experience these things again and new love and falling in love with someone is so, it’s so amazing. And when you get to experience that multiple times in your life, that’s actually pretty cool.

Oh, for sure. I mean, my boy’s father, I love him and I’ll love him forever. We had a beautiful marriage and he’s my love story to the end of time, to the end of time.

And that is one thing I have to tell, you know, that I tell people in relationships. And again, if that’s a problem for you, be on your way. He is just as important as my children and he’s a person, he’s my person too.

And so, but you know, that’s a massive love story in my life and it will forever be. I’ve known him since I’m 14. I’m 46.

So he’s been in my life longer than he’s been out of my life. So it’s, we are a family and I have my family of origin. I have my nuclear family.

And that doesn’t take away that who he’s with and who I’m with, we’re always going to be a family. And so I think, but I think what needs to decide and what people need to be clear about when you are going to date, especially with chronic pain and illness too, because what kind of relationship do you want to, a casual one, a short-term one, a long-term one? Do you want to get married again? Do you want a life partner? Because this could be a stressful thing too. And, but maybe it’s just going to be a love and maybe it’s going to be a short-term, but to only have one love or life partner, I don’t believe that.

And I believe they can, the same one can come back again. People have asked me if I would get back together with my, my former partner who, because we, you know, it wasn’t any kind of, the breakup was out of kind of like, we just want different things in life. And I’m like, I don’t, I don’t think so.

And not anytime soon. But if I was, you know, if I find myself much older and wanting a trusting companion and partner, and so was he, and we found our, found our way together, maybe at like age 68 or something that I would think that would be a beautiful way to come back together someday. If he came to me now, I would say no, but I’m not going to say that, that, that couldn’t happen.

What a beautiful model for your children to have to see. And to have seen I have dated a few men who were divorced with kids. And, and at times they’re, you know, they would, well, one of them especially was like, I, I talked to my, my kid’s mom about everything.

We’re still really good friends and, you know, yeah, we, we’re still learning to this, this new dynamic. So sometimes we get upset with each other and it can be frustrating, but my, my intention and also he refused to call, call her his ex-wife or his ex. He’s like, I just, I’m going to always use her name.

And I loved that. I thought that was great. And I’m like, that is so mature.

Like I, if I’m going to be dating somebody who has children with another person, I want them to have a good, healthy, respecting relationship. I don’t, I don’t want to not like her. I don’t want there to be, I want it to be good.

I want them to be friends. I want them to do stuff as a family. And so I think that it’s, it’s actually, there’s a lot of dating advice out there saying like people shouldn’t see their exes shouldn’t talk about their exes.

And like, they want to just like erase your history. And like, I had, I had a man text me after a date saying that I was such a red flag because I kept, I kept talking about my ex and I was like, I really like mentioned something that came up that he brought up. And like, it, there was no way of me getting around talking about my ex.

And I feel like so often it’s just like, people think it’s an automatic red flag. And I also think it is way more common and accepting in queer relationships and queer, the queer community to have a good relationship with your exes. And I love that.

And that, when I think about now that I think about it, the, like that particular person his wife had come out as a late in life lesbian. And I’m like, I think when I have seen it, it’s been in mostly queer relationships when it, when it’s actually, when people strive for that healthy dynamic and get it, maybe because it’s more normalized in queer communities. I’m not sure.

I wonder why. But, but that is a trope among the queer community to be friends with your exes. And I think it’s, it’s a good thing for women.

Like I’m friends with the women that I dated for sure. But yeah. Yeah.

For episodes of Ask Elisa, we do take listener questions and I have one question from a listener asking listener questions or questions through social media. And this was a question that I got from somebody on threads. And they asked when your romantic partner isn’t quite as supportive or as flexible as you need around managing your chronic conditions.

How do you know when it’s time to end things? And this person in particular said that they, they felt that their partner had been becoming impatient around, not maybe impatient, but like a little bit frustrated with them having to cancel plans. And it was like the, a little bit of a lack of flexibility, mostly the flexibility thing that often so many of us with chronic conditions, just, you know, when we say yes to something, often it comes with an asterisk. It’s a tentative.

Yes. It’s just how we have to live our lives. If we are doing the right thing by listening to our bodies and not abandoning ourselves, we have to accept invitations with an asterisk and say, most of my family and friends, they know that I might need to cancel, or they might know that I’m going to say, uh, I have a performance that weekend.

So even though you’re inviting me to brunch, I can’t go to brunch and do a performance that night. So thank you for it. Let’s reschedule or another time I would love to join you.

So it’s not always that straight up, uh, canceling an invitation, but it’s like, you have to say no. A lot of the times. I, if she’s already of this, I shouldn’t say she, if she has already gotten to this point of wanting thinking, it’s asking this question.

I have to say first, have you communicated? This is how I’m feeling. You aren’t flexible or I’m feeling like you’re not flexible. Um, is, has there been a big conversation? Are you communicating? Communicating? I’m going to stress communicating all the time.

They can’t read your mind. People can’t read our mind, even though we want them to, they don’t understand. They don’t live in our body.

Please, you know, tell them exactly what you need, what you want. Can we be in the medium? I always am a maybe please don’t stop asking me, but I’m always a, maybe I’m always a, maybe can we pivot? Can we have a backup plan? Can we make a plan and then have a backup plan? So yes, I’ll say maybe to this, we’re going to go out, but can we have a backup plan to stay in order and do something else so that we both can be flexible? So I know you want, you, sir, want to go to a movie and I don’t know, whatever dudes do. I don’t know.

It’s been a while, been a long while. Um, but can we have a pivot plan for, um, a me plan, a you plan and a me plan so that if I, if I can’t, which I want to, I want to, but can we have two plans? But if you’re already questioning that, I feel like this is over. It sounds like it might be over.

Yeah. To me, it sounds like their gut is telling them it’s time to end this. Yeah.

Maybe they haven’t had that conversation. Another thing when you are making plans with some, like your partner or you and your partner are invited somewhere and, and one, and one of you has limitations, chronic illness has, has spoons to manage a budget to manage. I think that when there is something that’s super important to you to, that you want to attend or participate in, and your partner is the one with chronic illness and you really want them to do it with you to let them know so that they can see how they can.

Cause there’s so much planning that we’re always having to do around activities and doing things. And so if your partner is somebody who is managing all of that, it’s, it really, it’s really helpful for us to know that our attendance with you at this function means the world to you because then we can figure out how to prioritize it. Cause then maybe we’ll say no to the other thing we have going on because we realize we need to show up for our partner here.

So we’re going to say no to this other thing that we have going on, that we were invited to, that we thought we were going to go to, but we didn’t, didn’t realize that going to this event with your partner was actually super important to them. I think that sometimes we need to let our partner know, I need to know when you need me by your side. I need to know what’s most important for you when, when you need me to really show up so that I can do what I can to make it happen.

And the other way around too, is I love this idea of a backup plan. I didn’t even like a, a pivot plan. I never really thought of that with my ex-husband, if we were invited to something and I couldn’t and I couldn’t go, he wouldn’t go.

And with my more recent ex, he was happy to go to things without me. And I was happy to let him go without me. And so I think if you say like, okay, we are invited to this event, our plan is to go.

Is this something, if I’m not feeling well, are you going to be good to go without me? Or, or do we want to have a plan, a plan for us to do something else if it doesn’t work out? Or is this something you really want me by your side at so I can do whatever I can to make it happen? Take the extra meds, plan the extra nap, whatever it is. But this is all a big conversation. And a lot of times it’s easier just to be like, but I know communicating takes a lot of energy, but they don’t know what they don’t know.

And it becomes a, well, she cancels a lot or, you know, I’m always going alone or we never get to do anything together. They’re not communicating with me. I mean, there’s all sorts of things, but yeah.

I think it’s just a lot of communicating. Have you had that conversation? If you haven’t had a conversation, maybe it just needs to be had before, you know, if it’s important to you, if you’re already feeling like, huh, that’s too much. I’ve had this conversation.

They’re not listening. Then I think trust your gut. If it feels like they’re starting to resent you and resent you for having to take care of yourself and resent you for the attention you have to give yourself to manage your illness.

You know, resentment is really one of the hardest things to get over in relationships. I think a lot of resentment built in my, in my marriage. And that was a big issue really.

And it was unerred resentment, you know? So like the resentment was building and I had no idea that there, when I found out in the things that he had issues with, I was like, what that like, I had no idea that those were even anything going on in his mind. Yeah. Resentment is just a, it’s a tough one.

And I think it can happen. It can happen when you have to give your care and attention elsewhere, whether it’s to, you know, a family member who’s sick or to yourself. That was great.

I’m really, so our next episode together, Sara is a Q and a around dating with chronic pain, and that’s going to air next week. So I hope everybody stays tuned for that follow-up. And thank you so much, Sara, for, for joining me today.

Thank you. And thank you so much for sharing your story. I think that a lot of times we forget that sharing your story, especially when it’s a vulnerable one can really takes courage.

It takes out, takes being vulnerable to the public, especially when it’s something that not a lot of people understand or know about like chronic pain and chronic illness. And I feel like the more we talk about it, the more people will really realize that they’re not alone. And when people suddenly find themselves in basically a new, a new body, a new reality that it is jarring and it can be isolating.

And there are, there are resources available for connecting people. And I really think it’s amazing, Sara, that you created your business around connecting people with chronic pain and chronic conditions. Again, it’s hello, pain peeps, and you can find it online.

And I have the link in my resources tab of my website, askElisapodcast.com. Thank you for listening to Ask Elisa. I’m your host Elisa Sparkman. This episode was produced and edited by me, music by Jacob Patterson.