Ask Elisa Podcast

PODCAST EPISODE TRANSCRIPT

It’s Ask Elisa, a podcast about dating and relationships in your late 30s, 40s, 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.

The website is askElisapodcast.com. You can also follow me on social media at askElisapodcast. And remember, Elisa is spelled E-L-I-S-A. I’m on Instagram, threads, TikTok, Facebook, and YouTube.

Today, my guest is Sara Gehrig, and we are doing a very special Q&A episode, Q&A about dating with chronic illness. Sara, thank you so much for joining again. To hear more from Sara, hear kind of Sara’s background, you can listen to last week’s episode, episode 25.

And this is our second one where we are really just focusing on answering all of those common questions that people who live with chronic conditions have regularly around dating. So, Sara, can you tell a little bit about yourself and where you come from and why you’re the one here doing this Q&A with me? Yeah, thank you so much. My name is Sara.

I’m 46. I live in northern Wisconsin, and I own HelloPainPeeps, LLC, an online peer support platform for those living with chronic pain and illness. I live with every known apathy, itis, failed back syndrome, lived experience.

So I’m just happy to be here. You know, after having a chronic pain, you wind up with all the chronic conditions as well, all those overlapping conditions. So I’m happy to be here talking about, you know, answering these questions because I live them.

So I’m walking these questions and answers with everyone. Thank you. I also live with chronic pain and chronic fatigue and have experienced dating with these chronic conditions.

So I think we make a good team to answer these questions and various, you know, chronic pain and chronic illnesses, chronic conditions can, you know, have a variety of ways they show up in people’s lives, a variety of ways that they impact people. So they really just don’t look the same for any person. But we have a lot in common at the same time.

So I think when we, we may generalize in some of our responses, but remember that each person might need to tweak our responses a little bit based on what their, what their life experiences and where they are in their life and what their conditions are like and what their limitations are. So Sara, you, you manage communities online for people experiencing chronic conditions and the topic of dating and relationships comes up a lot. And that’s what made you look for resources and how you found my podcast.

Yes, it is. I’m really grateful that you reached out. I think this is going to be a really helpful tool for people.

Yes, it does. I lead a host of people from ages, let’s say 18 to 70s. And I also lead an LGBTQ group and it comes up a lot in there.

And managing any type of relationship is hard. Not just in terms of friendships, relationships, but for sure in dating, how do we navigate them? There’s so many different, when do we talk about it? When, you know, there’s so many things to talk about. So I was so happy to come find you and, and yeah, it’s just really hard to talk about these things.

So to have this platform, I think this is going to be great for this community. Great. Should we dive in? Let’s dig in.

All right. The first question I think is the most common one people face. And we talked about it quite a bit in your previous episode.

But when is the right time to tell someone that you’re, when you, who you’re dating or potentially dating even about your chronic conditions? Yeah, I think this is a, this is a good one. And I, you know, I, I learned the hard way. I didn’t say it right away.

And I lied. And then people would make big plans. And then you pay for it.

So I think, you know, do you share it right away or do you wait until you get to know someone or you let the relationship develop? And I don’t think there’s a right or wrong answer here. You know your body’s best. You know your body best.

But I think to show up as your true authentic self is going to be the best. And, you know, I said it before, when we don’t tell them, we take away the ability for them to care for us as well. And when we don’t say it, we’re not being our true self.

And so I think as soon as you feel comfortable saying it, that’s when you should say it. I completely agree. I think if you’re comfortable telling them, you should tell them.

And it’s such a great way to find out if they are somebody who can be supportive and can be somebody who allows you to be yourself and doesn’t try to fix you or offer the solutions. Their response can kind of tell you a lot about what kind of person they are, but also just what kind of romantic partner they could be too. And so I’m a big proponent of sharing a little bit of vulnerability really early on in the dating process so that you can learn from their response.

Their response gives you so much information, and the early stage of dating is a time for information gathering. It’s where you are trying to learn about this person to see if you’re potentially a good match. And a good match for somebody with chronic conditions is going to be somebody who is accepting, supportive, and can hold space for you in your conditions without being dismissive, minimizing them, trying to fix you, or just running away.

Just avoiding it completely for acting like they didn’t hear it or read it, depending on where you are in the stage of early dating. And that information is something that you should definitely take into consideration as you’re proceeding with the relationship. Because another thing about early dating is that if somebody makes you uncomfortable or does something that is basically, I don’t want to say bad, but has any kind of bad behavior or unkind behavior or unsupportive behavior early on, if they’re showing up like that early on, it’s not going to go away.

It’s going to happen again, and it’s going to keep happening. Because people do want to put their best foot forward. And if it shows up early on, it’s an important sign to look at and listen to.

And I think if you’re dipping your toe in the dating world, don’t do it until you’re ready to be able to share it. That’s not who you are, but it’s a part of you. So have a little blurb about it.

Have just a little blurb and be confident in it. It’s not who you are at all. And like you said, if they can’t hold that space for it, I think that’s such a flag.

And pass on by. Yeah, it’s a sign that they’re not the right fit for you. Right.

Another thing that I do want to say is that when you do disclose this information, you do not have to give them all the details. You can be vague. And something that I have done in the past is I will say, like, I have this condition or these conditions that give me some limitations.

And sometimes they’ll ask, can I ask what it’s called? And I will say I’d rather not share because I don’t want to encourage any Googling of the condition. And you can trust that I’ll tell you what you need to know. And at some later, I’m not comfortable disclosing that now.

Maybe later I’ll share more with you. And that’s another that’s another little boundary that if they don’t respect it. Then they are probably not respectful of your boundaries with your illness.

Right. So if they have if they have a problem with you not disclosing exactly what it’s called or all the details, then that’s another flag. So, again, like when you are sharing information or saying no to information that’s requested or not at this time, I’m not comfortable with that yet.

Those are more more ways to gather information. So another another thing in my regular my dating advice in general is to drop a small vulnerability early on to gauge their reaction and drop a boundary early on to gauge their reaction. And there are really good ways to gather that information in the early stages of dating.

I agree. All right. So the next question is, how do I put myself out there when I’m afraid somebody won’t want me because of my illness? I think this goes hand in hand with this one we just talked about.

We are more than our pain. We are more than our illness. We are more than our condition.

So you have to decide if you’re going to start to date. Be ready. Like, know your worth, know we’re more than our pain, who you are is still in there.

The essence of who you are is in there. You’re more than your pain. You are loving, kind, silly, you’re creative, you’re, you know, you have a sense of humor.

Be ready to shine and all those things. You know, be ready to talk about all those things, have a meaningful conversation, be ready to be vulnerable and worthy of love exactly as you are. And if you don’t come across people that are your fit, you know, move on.

And that’s not, as we talked about in the other episode, that’s not a failure or rejection. They’re just not the one for you. And there’s someone else.

There is a risk that people will not want to date us and not want to, they may not have the bandwidth or may not think they have the bandwidth. They might be afraid of unknowns that are never going to happen. They might be afraid of unknowns to them, but they’re known to us.

And we know that they’re not really that big of a deal and we can handle them ourselves. We just really, when you’re dating, it’s difficult to embody the, well, embody, I’m trying to say like, let go of the fact that people are going to not want us as romantic partners, whether we are, no matter who we are. Because finding a romantic partner is such a unique and specific fit for each person.

What you’re looking for is totally different from what somebody else is looking for. And it’s okay if somebody decides that they don’t want to date you. There’s so much about chronic pain and chronic illness that people don’t know.

Sara, you said this earlier in the last, you said this in the last episode. We need to kind of let go of, I don’t know how to say this, of expecting them to know. Like, we need to just understand that they are not going to know much about what we deal with, what we go through, because doctors don’t even really know all the time, right? Like, a lot of chronic pain, chronic illness, chronic conditions come with an element of mystery to them.

And we have to learn to live in that space. And so when we’re inviting other people to come and join that space with us, not everyone’s going to be equipped to be there. Right.

And the understanding is, it’s called dating for a reason. They’re doing the same thing we’re doing. So it’s okay.

It’s okay if they’re, you know, it’s a risk. It’s a risk. It’s a chance.

And it’s exciting. Be excited about it, you know? And be excited about the person that you are. And if someone’s like, pass, then pass.

Pass on them. Yeah. You have a lot to offer, regardless of your health status.

We are such multidimensional beings that people will recognize you for what you have to offer. And even if at that point they decide that it’s not a good romantic fit, that doesn’t mean that there’s anything wrong with you. You’re still worthy.

You’re still enough. You’re still creative. You still have a sense of humor and your love, your treasure, your gift.

Keep moving. I did see on social media, somebody posted that somebody decided they didn’t want to date them because this person had had cancer in the past and they beat it and they were in remission. And the person didn’t want to date them because they were scared their cancer might come back.

And it’s kind of like, well, anybody could develop any kind of medical health condition at any time. So it seems like a silly thing for that person to say they don’t want to date them because. But also, that was them showing their colors, that they don’t have the space to hold for somebody with a heavy history even at that point.

So good riddance to that person. If they if they live their life being with that mindset, they might never find a partner, but maybe they can’t. They can’t hold the space.

They can’t sit in any discomfort. And that’s part of life. So, you know, you want to find the person who can sit with you with all that you have to offer and all that you are.

And for people like like us, that includes our conditions. I think a fun exercise to do is it’s easy. Get a piece of paper, put you in the middle of it and then like and then write lines of all the things that you are.

Do all the things that you are. It’s, you know, do it for your best friend first. And then or have your best friend do it for you and then have them send it to you.

And that’s who you are. If you can’t do it for yourself, have your best friend do it for you. Yeah, I love that exercise.

Yeah. And also I just it’s OK to be afraid of people not accepting you with this conditions or not wanting to jump in with you. It’s OK to have that fear.

You can even sometimes I actually have been reading a book about worth. It’s a new book that came out worth by Marissa Franco. And.

One that what she says in her research in the research, not just that she’s done, but that she’s compiled that, you know, secure, secure attachment or sick people who are sick, more secure. It’s not that they don’t have those difficult feelings of self-doubt and unworthiness and being nervous and scared. It’s that they can actually acknowledge them and name them and say, yes, I am scared of this.

I have this fear and they can just say, like, oh, hi, fear. I know you’re hanging out there while I look at this dating app, but we’re doing it anyway because we love ourselves and we love this and we accept that we have this fear. So naming the naming that you’re afraid is is actually, you know, already part of the battle.

I think I haven’t finished the book. I’m reading it right now. It just came out last week.

That’s what that book on the website. Yeah. She also has she wrote her first book was called Platonic and it was about developing platonic friendships.

All right, let’s go on to the next question. This is a good one. How do I date when I never know how I’m going to feel that day? I love this so much because we never know from day to day.

And it’s. I learned this in my support groups and my support community that I facilitate is one person said so beautifully, I can be in pain in bed at home or I can be in pain in the world. And so I think it’s this risk reward type thing.

And I love I just love this so much, but it goes down to communicating what I we yes, we went out yesterday. I might not be able to go out for another week that we did a lot today. That might put me out for another week.

This is just how my pain is. I never know from day to day. I think it’s just a lot of communication, and it opens up a space when you communicate to communicate like that to share what your practical strategies and real experiences to say, Oh my gosh, remember when we went.

I don’t know, for that hike and out to dinner that put me out for a week. But when we were at your house and just watch movies for that day. That was so restful that we were able to do XYZ.

I think it just opened such a great talk for to share real experiences and your strategies. Yeah, I agree. I in the very early early stages like say you had just matched with a person on a dating app and you chatted for a while and you are your you’ve told them a bit about your conditions and they’re there.

They seem great and you’re ready to schedule a first date. I think that, like I said before, you know you when you communicate their responses give you a lot of information. So this can be a time for you to gauge their flexibility and the way that how accommodating they can be an understanding of what your limitations and your needs are.

So, and I think this also is a reflection of not reflection. And this also kind of parallels some some ways that maybe safety can take place for for women and dating especially if you’re dating men. I always say that like men are the only ones who can be the perpetrators when if you listen to an episode.

The story time with Hillary Hillary has dated a woman who lied about everything. And she also dated a woman who threatened to kill her so it happens, we should look at safety. She said that before she was not.

She was bisexual so she was dating men and women and she would always text all the information about the men to her friends but not the women and then she had those experiences and now she’s like, oh, I need to do it for everybody. So we should always be keeping ourselves safe, safe. And one of the ways that people do that is by the location and the place of that first date especially or maybe the first and second.

And so you can also do that with considering your, your conditions and how you might be feeling knowing Okay, well, if we are scheduling a date on Thursday evening and Thursday I have X, Y and Z happening. Maybe the, the safest way to do this is to choose the cozy Thai place five minutes from my house, they don’t need to know that it’s five minutes from my house. And I know it has really comfy booths that are easier for me to sit in.

I know that they are quick. Their service is quick. I know where their bathrooms are.

I know what their parking lot is like. And I know that when I am having a rough day at the end of the day that I can go to that Thai place and feel comfortable and safe. And, you know, I know all the things that surround me so I know all of my kind of my plans that I need to know like, like I said, like what bathroom is or where to park and that kind of stuff.

So, if you can suggest the first date and suggest a place that you know is a comfortable safe place for whatever conditions might be flaring up after that day or around that time or even if you don’t know that you’ll have a flare you could just schedule the first date to be a place that’s more of a flare safe location, so that you’re not so worried about what if, you know, like, instead of choosing to go bowling on a Friday. You can schedule a first date say you can say I prefer sitting down face to face over, over an appetizer or over some drinks or whatever. That way you can express, you don’t have to say because I physically need to feel comfortable you can say I want to sit down and have a calm face to face for this meeting.

And when you express those preferences and needs. You will get a response that gives you more information. I think going further with that too is we know our bodies best we know most of the time, what our best times of day are.

So say, hey, let’s have a. Let’s meet at noon. Let’s me that you don’t always have to go out for dinner. I don’t know who made that rule.

Yeah, like let’s let’s meet for coffee or tea at nine or 10, let’s meet at noon. Like, you know, I don’t when someone’s like let’s meet at six for dinner. Are you kidding.

I know, I often will say like, hey, how about we have an early dinner at like five. And then, and I’m like I act like it’s a on a whim but like, I don’t want to go out. I want to be home by seven.

I need to be home by seven. So I, or even earlier if I can be so I just kind of make it seem like oh yeah let’s just go for an early dinner, when in reality I always want an early dinner, because I go to bed so early. Right.

So I think knowing our best times of day is really a good thing for this to, you know, we know when we kind of feel our best. And so no one says that you have to always go out for eight o’clock dinner seven o’clock dinner. No.

Say what works best for you closest to home comfy place I think, you know, I think those are great ideas for this, you can always state what your preferences and sometimes I’ve even had people suggest something that didn’t seem like something that I didn’t want to do people would suggest something I didn’t want to do. So, I would say, Oh, that might make a better second date or third date for first date I really prefer this. And, and then you know, if I haven’t explained why I don’t want to go mini golfing or, oh, you know what’s popular.

Or it was at least last year when I was on the dating apps those acts throwing places. I’m like, never. I do not want to throw an axe.

That sounds painful. Like how heavy is an axe, and how far away are you from that, whatever you throw the axe at like no I can’t I like literally could not no way. And so, when they suggest something that like an axe throwing place I’m just like, we might not be very compatible if that sounds like fun to you, but maybe they’re just trying to be, I think, especially for for men, heterosexual men, there’s a lot of pressure on them to plan a fun date.

And so I think that they might say like, I want to take you to dinner and then I want to go do this first and then go out to dinner or whatever, it’s okay to say thank you that’s lovely but I really prefer to have a quiet comfortable casual meal or appetizer or ice cream or dessert, you know, whatever, for, for the first, first date I really just like to be a casual vibe check. And that can also just take the pressure off of it a little bit even if it’s, you know, maybe you have many reasons why you want it to be a casual vibe check, not just to lower the pressure, lower the cost, low, you know, all those things that it can be a really great way to have a first date. All right, next question.

How do I find someone who understands chronic pain or illness, without expecting them to become my caregiver, or wonder if also sometimes they might expect that they need to be your caregiver. This goes back to that, you know, I think this is a good conversation of what is a healthy partnership. What does support look like for both of us.

And what what are healthy boundaries of, again, I’m not when I share this with you, I’m not presenting you with a problem to be solved. You know, you can trust. I’ve been doing this for a long time.

I, you know, that’s that vulnerability piece, you know, but I think the biggest thing is what is a healthy partnership what does support look like for both of us. I’m not looking for a caregiver care partner, like, but in a healthy partnership. To me, you both are in a way like if something would happen, and I would help you, you would help me but but as far as my chronic pain or illness.

I’ve got this like I’m really good at this and I don’t need any suggestions you know I don’t feel like, but I, I have that conversation with them. You know, no thank you suggestions, no. You know, I always just say you can trust it, if it but if I, you know, I will ask for help when I need it.

I will ask for suggestions when I need it. But if I do, I will ask you. I just think it’s a really good time to set those kind of boundaries of what is a healthy partnership between both of us.

And what does support look like in a relationship. Those first few those first times that you’re communicating you’re really laying out what are you looking for. And it’s time to set boundaries.

And I think it’s important to remember that they can’t read our minds, and we can’t read their minds and so it’s a very very human thing to want to fill in the blanks about what they may not be expressing or what they may not be saying. And you won’t know unless you ask. So if you have a concern about how they may be interpreting what you’re telling them or what they’re experiencing from you.

Maybe you are feeling like sometimes you know we can feel like we are maybe a burden or a disappointment when we have to cancel plans or do stuff and so I mean, you can ask how are you feeling, or is there, or you can even say I know this is, this can be a this can be disappointing when we have to do this, whatever happened and and say is there. Is there something else we can we can do. And when you want when you need somebody to be flexible with you, and let you have you have to communicate the flexibility that we have developed as people with chronic conditions is like a muscle.

And so when you meet somebody new who hasn’t, who hasn’t had to tone this muscle and develop this muscle, you communicating your needs your wants asking them questions, kind of checking their understanding check in checking in with how it’s going how they’re doing that. That can help them kind of start developing that muscle as well. And I think that what oftentimes what we need from a partner is kind of that flexibility as opposed to the caregiving right and so I think if they understand I need my like what your needs are in a relationship like Sara was saying, communicating what you know kind of level setting your relationship basically.

And ongoing communication about about it because things change and think people grow, but letting them kind of know when how how your flexibility works, how you have to kind of manage things so that they can support you and making decisions when you have to make them and they can understand those decisions, and they can be flexible by your side as opposed to, you know, you can let them know like that’s how you can be the be the best partner it’s not about taking care of taking care of me. It’s about understanding that I have to manage this and be flexible and your flexibility by my side could really, you know, be beneficial and how we go through life. I actually think about this couple that I knew once, where I just like went to a game night at their house I didn’t really know them.

They were married, and they moved away, but that’s why I that’s why I didn’t like continue this no they were super cool. And the man went over like stood in the doorway of the kitchen and he said, hey, to, I think her name was Sara he said hey Sara, where are you at and he held up his arms in like a. I’m trying to describe it for because like kind of like a, like, up, upright, or like at an angle or all the way down and bent at the elbow, and it was he was asking her where her hunger level was that for where he when she needed food, and they had this little system down and I thought it was so cute. And she like made, so he like put up his arms moved him up and down his arm up and down like where you at.

And then she was across the room and she’d like put her, put it like through at an angle like showing I’m like, I’m almost ready to eat. You should probably like put the food on the grill, it was just like this little language that they had and I thought it was so adorable and I thought like, man, when you are somebody with chronic illness and you like when you have hypoglycemia or something like that like how useful would that be for your partner who’s in charge of dinner who could just look at you and make this, like say they’re doing dinner that night they can, you know, kind of give this little check like hey, I know that I know that you have this need for food, like at a certain time and when you need it you get past that and this happens. So I’m going to cut we have our own little language to check it out.

I thought that was so sweet. I loved it. For sure.

Yeah. So there’s you can you can talk about ways that they can be supportive and develop your own rhythm and language for those kinds of things. Well, I think, and I, you know, I speak for men but I speak for a lot of women to a lot of people are.

I’m just a fixer. I’m just used to fixing things I don’t know how to help you. You don’t need to help me I just want you to be what I want you to be by me.

I want you to be by me walk along with me. Just, you know, just be with me. I don’t need to fix anything.

And I think that I’ve heard that a lot. Well, I’m just a fixer. I don’t know what to do.

I don’t want you to do anything just be with me be by me love me just just be by me be with me walk with me. Hold me, you know, like just put your hand here, whatever there’s, you know, I think there’s that. We just want to fix it and make it go away.

This isn’t going to go away. And so, just to be honest and say just be by me. You don’t have to say anything.

You don’t have to do anything. Just walk with me and be by me I think, you know, that’s an easy thing to say. Yeah.

Yeah, and it’s beautiful because that’s kind of usually what what we really want is, we don’t, we don’t want someone to to jump in and fix things we want somebody to live life with. And the next question I think is pretty is kind of similar it’s like how do you know, but it’s a little bit different I guess. How do you know if someone’s going to be a good partner.

If they don’t know what living with chronic pain is like. Yeah, we talked about this in our episode and my episode is, it’s hard for a person, an able bodied person to even understand what it’s like to live with chronic pain or illness. And so, this is a great time for a conversation about what we deserve and love what supportive partnership looks like again, and not expect them to understand what it’s like when we don’t know what it’s like doctors don’t know it’s like so.

What are you looking for I’m going to go back to that what are you looking for in a partner. When you’re dipping into the stating pool with your chronic pain and illness, be able to effectively communicate that to them and be able to listen to their response, and what they’re looking for. And sometimes you, you are really just not going to know what some in all, in all situations you’re not going to know whether someone’s a good partner until you start spending time with them and getting to know them, it takes time and I think so much of our, our culture right now is immediate, an instant, that we, we are, we forget that we really do need to take time and there are, there can be hits and misses for, for years, until you find someone who turns into a partner.

And that’s just the reality of dating, whether you are somebody with chronic illness or not, you know, you’re not going to, you’re, you have to just accept that you’re not going to know. And it’s okay. But also getting to know someone and getting to love someone and having someone learn about you and getting to love you is so beautiful and such a wonderful experience.

So, you know, just because you don’t know what kind of partner some, someone’s going to be, you know, it’s still so worth it. Yeah, it’s worth it. Even if it doesn’t last, that love was real that they gave and that you gave and that you had it was real.

It’s always going to be within you, even if it doesn’t work. And you can, you can practice this kind of, I call it detached dating, but it’s, that’s kind of like, not really. Well, it doesn’t mean that you don’t care and you don’t, you don’t show genuine interest.

It doesn’t mean that you don’t connect. So it’s more like detaching from the outcome and staying in the moment and trying to focus on enjoying the connection for where it’s at, at the moment. And to kind of keep yourself from future tripping, either worrying about the future too much or getting too excited about the future too much.

Because both of those things can really just kind of derail the connection that you’re building. And so keeping yourself in the moment of that connection and enjoying it and accepting it for what it is, that will help you let go and also have, and appreciate it for what it has been. So keeping yourself in the moment can really help you stop from all that kind of worrying, like, well, are they going to be good when I have a bad day? Are they going to, how are they going to be when I handle, you’re not going to know until you’re there.

Until you’re there and then make a decision. You know, because you’ll know, you will know. People show, you know, Maya Angelou tells us and we need to listen.

People will tell you, show you who they are the first time. Listen. All right.

The next question is one that I think a lot of people have and maybe are a little bit scared to talk about. So how do I talk about intimacy and sex or physical affection when pain, especially or illness affects my body? And these are important conversations to have if you’re developing an intimate partnership. Yeah.

And it has to be with complete honesty. I think this is a real question for those with pain because it can happen from surgeries, medications, fatigue, pain, all of it. And, you know, I find that some doctors don’t even want to talk about it.

And so it just has to come right down to, you know, I think wait until that type of conversation gets started, especially, you know, not right away. But once you’re to that point of intimacy, it needs to be talked about for sure to say, you know, this doesn’t feel good anymore. This takes me, you know, this long to orgasm or whatever.

Like, it has to be completely honest. There are two people in this relationship for intimacy or intimacy looks different for me now. You know, it’s not about just sex anymore.

I’d rather just be intimate. I can’t, you know, for positioning reasons or, you know, you have to really get vulnerable. And again, this goes back to if they’re willing to and this isn’t like a texting conversation.

Maybe it’s and I don’t only know if it’s a phone call, maybe it’s a zoom conversation or a FaceTime conversation. If this is an online relationship, and I know we’ll get to that conversation, but or it’s sitting face to face, you know, because you, you can really tell someone’s emotions by sitting face to face, but there has to be a lot of honesty. And so you know that what their reactions like because some people are revolved around the physical part of a relationship.

And they won’t want to go any further with you. Because, oh, I’m sorry, intimacy and sex is all, you know, is all I want to be in and I don’t. This doesn’t interest me and be prepared for that.

And again, that has nothing to do with you. But I think you really have to get specific about what I what you love about intimacy and what you like I can’t be touched here. This doesn’t feel good to me anymore this and what sex looks like to you now.

Maybe you can’t do anything but you can do things for them. And making sure that they know that has nothing to do with them, and everything to do with what your body does and does not do. But it’s you still enjoy it and, you know, the whole conversation, and I think it’s, it’s just communicating, learning to, to talk about it, maybe you talk about it with a therapist first, a friend first, someone you trust first before you talk about it to them.

But it’s something we feel like it’s, you know, I have bladder bowel and sexual dysfunction, and it’s like, no one wants to talk about it. I talk about it all the time. I’ve written about it because it’s, it’s who we, it’s a thing because it can happen from surgeries, medications, our pain, our fatigue, and we have to talk about it.

If we’re not talking about it, who is someone else’s and that’s not the truth. We’re the ones living it. Yeah, I think that it’s.

It’s also can go the other way around where, you know, you, maybe you’re always having this pain or you’re feeling you mentioned during the day that you were having a bad pain day or you were having a migraine and you are dealing you know you maybe you mentioned some of your symptoms that you were experiencing that day. And so your partner is perhaps going to assume that you are not interested in any intimacy or sex that night. And that maybe that’s not the case, you know, so I definitely experienced that a lot with my, with all of my past partners, because they’re, they’re more worried about initiating and always wanting me to initiate because of my, my pain and my illness and stuff and it’s, you know, and sometimes that can cause some, some issues in a relationship when only one person is ever initiating if you’re the only one initiating maybe that can start to feel bad.

So, not just having those conversations about what what’s going on with your body and your illness, but also like what are what is, how does that impact them in in discussing about what their needs and desires are as well. So, I think that, like I like I’ve said many times as humans we fill in the blanks, a lot of times we kind of make assumptions about what people might be experiencing without, you know, in with the best of intentions, especially when it comes to like I said a partner maybe assuming that, you know, not wanting to not wanting to make you feel bad by initiating and making you feel like you’re not enough for them or something right so there could be a lot of things going on said, especially when it comes to that sex and intimacy and just learning how to, to ask questions. And, you know, show, show interest and curiosity around, around what your partner is experiencing in your, you know, your, your special intimate life together, and kind of discussing also like other, I’m not, I don’t talk a lot about sex on my podcasts.

So, this is not something that I have practiced talking about publicly but you know there are devices and toys and pillows and like there’s so many things that can that you can introduce into your sex life that could maybe make sex more comfortable for somebody with chronic pain or chronic illness, and just practicing talking about it again it’s, the more you talk about it the easier it’s going to get. That’s what I’m basically saying and so the more that you can ask questions, and maybe just even have a have a weekly check in at night about, about how it’s going. It’s, you might even need, it’s so hard to bring up you might need to like schedule it because sometimes it’s hard to get the courage to talk about it if it’s something that makes you uncomfortable, especially if you grew up in purity culture or in, you know, in any type of culture.

Well, I mean, basically so many cultures, shame, any kind of sexual desire shames women for having sex drives and and sex, sexual desire so we have so much to learn, depending on how we’ve grown up and or maybe we grew up in a place that was super and we, we don’t even, you know, that maybe it’s overwhelming and that our, our limitations are making us feel shame because of the the sex positivity we’ve grown up around so you know it’s, it can be a really difficult topic and the more we challenge ourselves to, to have discussions around it, the better we’ll get at it and then the more, the more fulfilled we can become in our intimate and sexual lives and I love Sara that you said, talking about it with a therapist first, that is a, that, that’s such a great idea like have, have those conversations with your therapist or a friend or family member that you feel really comfortable with. I actually so I’m 42, I have a 22 year old friend that I can talk about sex with like nobody else. So it’s, you know, maybe find find that friend, and maybe you’ll learn something new that you never knew you could even know about sex from from somebody else and everybody.

Everybody thinks about it. Other than maybe like asexual people, but you know it’s, it’s a fact of life. So, it can take a lot of work to.

I grew up Catholic so I remember like making out with my high school boyfriend and feeling so guilty. And I remember as I got into college and started like making out with him and getting a little heavier on the stuff and feeling even more guilty and like stopping things, and it can take so, so much work to kind of like peel the layers back. And I think that we’re never gonna, we’re never gonna get anywhere if we if we don’t have those difficult conversations, those challenging conversations and guess you might find so much untapped joy.

And so I think sometimes when you are, when we think a lot about our limitations. Sometimes we, we can feel down about things and not think about, forget that we also have this challenge to be creative and think of how we can, how we can make things work and focus on like what we can do like Sara was saying maybe I can’t. I can’t really do much in my own body but I can do stuff for you and that is that can be a really beautiful thing in a relationship.

I just want to say I think this is very common for both men and women with chronic pain and illness, and there are PTs that work with sexual dysfunction so please look that up too. And it’s, it’s a beautiful conversation to have and just because if you have sexual dysfunction, or it doesn’t mean anything. There are so many things you can still do and intimacy is so beautiful.

And as you get older, too. That’s not the number one thing in your relationship, it should never be the number one thing in your relationship anyway. And it’s it’s an easy conversation to have I once it’s once you for once you have it the first time, it becomes such an easy thing to say because, again, like anything else, if they’re not going to hear it.

They’re not for you. They’re not they’re not for you if they glaze over when you say anything. They can’t hold that space for you.

And so anybody that you know and you don’t have to again, like Lisa said, just say it. You don’t have to give the whole, you know, your whole thing you can just say what, at least what makes you feel comfortable, but it’s a big conversation but also a beautiful one because intimacy is so beautiful. And there’s so many things you can do there are PT specialists who do do, you know, physical therapy and for people with chronic pain and illness, sexual dysfunction, and it’s beautiful and it’s a beautiful conversation to have.

And so, honesty is the best thing so. And I will say that I don’t believe it is appropriate to talk about sex. In the early stages of dating, especially if you haven’t had a date yet.

So don’t feel pressure to bring up anything about your, your needs or your sexual limitations, I know that maybe it can be something you’re like, okay, well, I, you might want to know, is this going to be a deal breaker for them. But you can, you don’t need to bring that forward right away. You can talk about your, your other limitations, and you’ll gauge their reaction and reception to that and so really follow your gut and your instinct around when to bring this up when it seems like the right time, and when you feel safe to do so.

And if you share with somebody about your chronic illness, and their responses. Well, can you still have sex or something like that, they’re probably somebody who just wants to hook up and might not be a safe person. Honestly, I, I, I believe that even if you might want casual hookups that talking about sex before you meet in person is still a red flag.

You want somebody who’s going to be respectful. And so if you are has, I don’t know if you did you watch that show dying for sex. So there was a show on I think is on Hulu or FX.

Both it’s on Hulu with Michelle Williams where she her cancer comes back and realize. Yeah, yeah. Yeah.

So she realized that she wanted to explore all the sexual things she hadn’t explored and gets a divorce and knows that you know she has only a certain amount of time left on our life and that’s what she wants to do so she’s looking for hookups and so, and sexual experiences and that is totally valid, but safety first and comfort first. Right. So, you safety not just physical safety but emotional safety and, and I really think, even if you’re meeting on a hookup app.

And both of you say your intention is to hook up like listen to your gut. That’s a really important time especially to listen to your gut, something feels off. It’s off.

Okay. I. Let’s talk about mobility aids, and maybe some issues with vision or hearing. So, so, how, how do this question is, how do I navigate using mobility aids and like having like looking more just maybe looking disabled and looking sick like.

Well, I think it goes with 100% honesty, like, I’ve done that where I haven’t brought my cane, or, you know, really like, okay like really had to spend so much energy like walking just right not having a lamp and masking, and that that’s not my true self. And if you’re doing that, you’re not ready to be you. I think, you know, using a filter so that you’re not showing your disability.

That’s not who you are, and that starts out a relationship on a lie. You know, so use your pictures if you’re on the app I’m just saying and you’re disabled and you’re in a chair, or whatever, show who you are. That’s who you are, and it’s beautiful and, you know, and if you need a cane, or you have a rollator, or whatever, or an ostomy bag, whatever that’s this.

It’s, it’s who you are, and I think it’s just 100% honesty, and they’re either gonna, or you have hearing aids, where you’re up, you know, or don’t wear a hat for a guy don’t wear your hair up, or don’t wear a hat to cover it. Just be honest. Yep, if you want to be loved for who you are, you have to show up as who you are, and celebrate who you are.

If I like have talked about, you know, having a partner, you can have a partner who’s supportive. And, but you would also have a partner who’s who celebrates you like there’s a difference too. So if you celebrate who you are.

Other people will celebrate who you are. If you’re comfortable with who you are. Other people will be inspired by that.

And so, loving yourself and accepting yourself and being yourself like people notice, and, and it, and people who may be a young, a younger person or another older person with mobility aids might think, man, I wish that I lived life like you, the older person, I wish that I went out with my mobility aids instead of staying home all day. Or you see a young kid who take your, take your walker with you. And they’re just like, I just want to be like a normal kid, they see other people with their mobility aids, they’re empowered.

So, you know, the way that we, if we can celebrate ourselves and our differences and our disabilities and our neuro divergence or our, you know, we can celebrate who we are as how we are we can show up how we are like that is such a powerful thing to do in the world. Where people are kind of taught to hide themselves and taught that there’s a certain type of perfection that exists when in fact it doesn’t. So, yeah, that’s I really I, I have been saying show up as your authentic self so you can be loved as your authentic self.

And then what Sara has taught me is give you’re also giving other people the opportunity to know and love you as your authentic self and I that’s like, thank you, Sara for kind of bringing that perspective to to my normal talking points because I. You’re doing other people a service to by showing up as your authentic self. And like when you just said, when we use our mobility aids or are showing up we’re also giving other people permission to do the same. When they’re at home like oh I don’t want to go out because I have to use this or the other.

We’re being an example to others who are afraid to do that and I just think it’s a ripple effect. I love that. And so much of our, our society wants, I mean I don’t, I don’t, this sounds very nefarious but, but wants to shovel disabled people under the rug and they can’t do that.

They can’t do that. Like that everybody exists, how they are, and everybody is valuable as who they are. And earlier I think in the last episode I talked about, you know, what, sometimes we might feel like we’re not being productive, but productivity is a construct.

Like it’s not even a real thing. So, it’s just interesting to, when you’re somebody whose existence is, is a statement. And sometimes, you know, and I get that sometimes you don’t want to be that statement.

And that’s okay too, like, we can have a lot of feelings about all of this, right. Yes, we can. So, I think, let’s just talk about the, a question I got from somebody on threads when I said I was doing this Q&A is, what about remote dating, what is, like what can we do for, like what can remote dating look like, is that a thing? It is a thing.

I think this is, you know, you know, whether it’s, you stay connected via, you’re going to have Zoom dates. You’re going to stay connected via Zoom or FaceTime, you know, you’re talking on FaceTime every day, you’re having a Zoom date all the time, you’re going to start a movie at the same time. You are, you know, you can be connected more that way than if you lived a half hour from each other, because you’re disabled and they work all the time, and they live on the opposite side of the states.

You know, I dated a woman that lived in Boston and we didn’t get, we saw each other maybe once a month or, I live in Wisconsin, she lived in Boston, and we saw each other every other month or maybe once a month, and we made it a effort, we FaceTimed every night before bed. And we were so connected. So connected.

More so than someone I dated, you know, that was two hours away. And so you can stay so connected and even if you never meet, and you only do that, it’s connection is so important. And again, it’s not just, you know, there’s so many ways maybe you guys get shirts made and you have shirts and, you know, but I just think there’s remote dating is a thing.

And maybe you aren’t even able to have a physical relationship anymore because you’re paralyzed. Or you have some bad neurological issues, and you just want connection. That happens all the time.

And so we have the privilege of having technology. Yes, I say you do you, and it is certainly a thing. Yeah, so much of my dating advice is around kind of like traditional expectations of dating and building relationship for people who are in person.

And I often caution against the early stages of dating, getting into that rhythm of like constant texting and constant communication. And I think that because sometimes when you, there’s like a lot of, there’s a lot of, what do I call it, in modern dating, a lot of people are unfortunately disingenuous around what they’re after, what they’re looking for. And so on dating apps, you might match with somebody and connect and start texting and get, you know, start feeling like really close to this person.

And turns out that they are actually never intended on meeting you in person. And so I think that in those cases, like you want to be very, very intentional about setting some boundaries around your communication in those early stages so that you don’t fall into building up this kind of false sense of intimacy before it’s earned, before it’s actually truly developed. And so I think that when you are going about seeking a connection via technology to, like we’ve been talking about, kind of communicate what your intentions are and what your, what your limitations are around meeting in person.

And also perhaps setting some boundaries over the first couple weeks so that you don’t jump into telling each other everything all the time, every day, all day long. Because again, that can build up this, you want to take time to build your connection, even if it’s a connection that you may never end up meeting in person. It can, it’ll end up, you know, you want to still focus on giving your, building your life for yourself so that whether this connection, so that this connection is not, is not making or breaking things for you.

You know, the added connection is a, is an addition to your, the life that you’re living, as opposed to kind of like making, yeah, becoming your whole life. And so, you know, one of the things I say in my, in my earlier podcast episodes is make dating part of your life and not your whole life. And if you’re somebody who can live your life and celebrate your life, enjoy your life, and you’re somebody who finds joy in what you’re doing, and you’re, you know, you are finding ways around your limitations to express joy, find joy, build joy in your life.

That if you can do that, and whether or not you have a special, a special connection in your life, like an intimate or romantic or whatever that looks like, you really like crack the code. If you, that’s like, you’ve won it, you’ve won, I think, like you’ve really figured out that, that your, your happiness is something that you’re responsible for. And we’ve been conditioned and fed our whole lives that romantic connection is what, is what makes your life fulfilled and successful.

And that’s just not true. You know, indulge your other relationships, you know, invest in your other relationships, your family, your friends. If you have like, if you don’t have any kids, but your best friend has kids, like, see if you can get to know them.

Maybe you can’t be around little kids because of your immune system or something. Maybe you can have, you can figure out how to play some remote games with those kids and get to know them and be their, their aunt or uncle or whatever it is that, and be a part of their life. And that can add so much fulfillment and meaning and connection and joy to your life too.

During COVID, I think COVID, you know, as, as traumatic as it was for many of us, and for being immune compromised and stuff. That experience of being able to stay home for three years, basically, is what allowed me to finally get control and manage my chronic illness because I wasn’t, I wasn’t exerting myself. And before that, I worked one day from home, remotely one day a week to manage my illness.

Now I basically work in the office one day a week. And I, and so like COVID has actually made it so that we have more acceptance of these remote connections. And I think a lot of us probably recognize that.

But I also think about how my former partner and I would play. I just totally spit. My former partner and I would play online, kind of like party games with his family.

And we were able to have and people started doing those like movie dates remote watching movies together remotely and stuff. And so it opened a lot of doors for, for ways to connect, but also ways to find fulfillment and joy in in activities that we didn’t have access to before. I just want to say, working with the chronic pain and illness community for so many years right now, sometimes that’s the only community they can have.

And I think it’s incredible. They need connection, there is so much loneliness. And I think it’s amazing.

And it’s not just through apps, it’s through groups, it’s through, you know, their interests and hobbies and if they can meet someone and connect with them. And I agree with you if that’s if they set that intention and make that intention known, I can’t physically meet, or it might be a while so if this is okay with you. I think it’s absolutely, it is real because that connection is real.

And if they’re okay with it. You know, there’s someone for everyone. There’s how many 7 billion people out there.

There’s someone for everyone. And I think, I think there’s multiple people for everyone. Oh, I do too.

Right. Yeah. I mean, I do too.

There are many someone’s out there for you. So, so, yeah. So when you feel if you feel like there’s the one who got away.

Well, there’s, there’s another couple of ones around the corner. Sometimes, yeah, so sometimes we feel like failures, like, oh, we lost the person. There’s many people out there so many people out there that we can have a have a love story with or just a wonderful beautiful connection brief connection with whatever it is, like, we can appreciate.

Like, you can get to a place to appreciate things for for what they are and what they’ve given you what you’ve learned. And I just want to wrap this up with like, let’s, what are some takeaways from what we’ve talked about I think is communication was like one of the big things that we talked about, you know, and one of the things that I have said and some of my dating advice episodes is, you’re not going to scare away a worthy connection by telling them how you feel. I think that that’s something that can go for for any kind of vulnerability right you’re not going to scare away a worthy connection by showing up as you are.

And by being your true authentic self. And with chronic pain and illness I think when your start when you are ready, and you know who you are. Now, not your former self.

You know, those parts of you are still in there but know who you are now, what your interests are now, what your hobbies are now what your limitations are, and be ready to communicate that fully, you are love, you are, you are worth celebrating you are so worthy. Be confident in that. And know that there are people that are going to poop on that and that’s fine.

Let them, let them, let them, and continue to, to be confident and all those things that you know are true about you and show up as who you are now in that truth stand in that truth of who you are now, because it is bold it is brave. And it is your truth. Also, we know our body.

We know what our nervous system needs to maintain our baseline. Don’t abandon that. I think that is a big takeaway going being in relationship with anyone.

I know what it’s like when I’m with people that don’t serve me, I have to step back from that you do it with your family members you do it with your friendships. Think about the people that are closest to you, they make your nervous system feel good. We have to do that with our relationships as well.

Yeah, and speaking of it kind of show up as who you are now. I actually said this to my therapist when I was talking about my, my boyfriend that I, so I, we haven’t been together in November, it’ll be one year. And so we met in November.

November 1 2025. And in July of 2025. One of my best friends died.

And so he met me a few months after that. And I was telling my, and I’m 42 now, so I was telling my therapist. It’s like he he’s meeting me as this grief stricken perimenopausal chronic ill chronically ill person.

This, that’s who I, that’s who he’s that’s all he’s ever known me as and my therapist was like, and he loves you, but it’s okay. You know, so like I always think like man just like two years before we met I was an entirely different person. My, my whole, my whole body changed with the grief and loss.

My, my brain changed. And, and then and so one of the things about our chronic illness, and like we have a lot of grief, carrying with, you know, sometimes it’s about the person we used to be or it’s about maybe the person that we don’t think we’re ever going to get to be because of our limitations and that’s something that we, we carry and so if you are able to access therapy, I think it’s therapy is incredible. I never actually, I went to a therapist twice in my 20s.

And that’s it until after my friend died and then I’ve gone weekly. Almost see for almost a year and and so October was when I last year was when I started going. I, I feel so much more confident in who I am and how I feel and it’s just made my life so much better.

And we’re going to start going every other week now, and I, my therapist reminded me that when I first started, I told her I don’t think I’ll, I’ll, I’ll probably just need some sessions for a little while but I’m like I’m never leave I’m never leaving you now. If you are not able to access a therapist, you can reach out to HelloPainPeeps for community. There’s so many other communities you can you can find online for connection and kind of peer support, peer support is incredible.

Peer support is a best practice in a lot of public health spaces. And I think that if you are searching for connection, and for people who you can relate to, look for it online and keep looking until you find the right place for you because there’s tons of options but I highly recommend checking out HelloPainPeeps. And also check out the resources on my Ask Elisa podcast website.

There’s, you can find the link to HelloPainPeeps and other dating and relationship stuff and any other last words Sara you want to share. No, I don’t think so. Thank you.

And if people have follow up questions, or want to send in more questions, please do, and I think Sara will come back. I will come back and for me you can go to HelloPainPeeps.com and I have a connect or contact us on the website. Awesome.

Yeah, if you want to send questions directly to Sara, and not not have to wait for a podcast. I would love to come back. But yeah, we can and we can also do both.

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.