"This really brought us closer together" - navigating a relationship with chronic illness

As you’ll hear in this episode, there was a time in my life where as much as I wanted a relationship, I didn’t think that it would really be an option for me. I didn’t even want to be with myself, so how could I expect someone else to want to be with me?

But it turns out I was wrong. I learned to accept that I am worthy of love and can be in a happy and healthy relationship. I learned that my conditions are just a part of me and they’re not going anywhere. and I learned that even if I can’t do a lot of the things healthy young people are “supposed” to do, it doesn’t mean that I don’t have a huge amount to offer in a relationship.

And from Sebastian’s side, we explore what it’s like to be with someone who can’t do a lot of those things. To see someone you love in pain and not be able to stop it. To navigate the emotions and fear and the “burden question”. And most importantly, how you find joy, humour and happiness, even in the most challenging times.

Obviously, we can only talk about our personal experiences, and we’re not claiming that we have the answers, or that our experiences will be universal. This is just a little snippet of insight into one experience of navigating a relationship with chronic illness.

But if you’re in a place where you’re feeling as though a relationship is out of the question for you, you’re just starting out in a new relationship and wondering how to navigate all the tricky parts, or you’re the partner of someone with chronic illness, we both hope that you find this chat helpful and hopeful.

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Natasha:

Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman.

It feels a little strange to be introducing my guest for this episode… my husband, Sebastian! If you read my latest newsletter, you’ll have seen that we just got married at a lovely little ceremony. But when we recorded this conversation we were about a week away from our wedding day.

Sebastian isn’t here to talk about the wedding though, we’re going to be discussing relationships and what it means to navigate all that entails when one half of the couple has a chronic illness.

As you’ll hear in this episode, there was a time in my life where as much as I wanted a relationship, I didn’t think that it would really be an option for me. I didn’t even want to be with myself so how could I expect someone else to want to be with me?

And that’s exactly what we’ll be exploring today – from both sides. What is it like to be with someone who can’t do a lot of those things? To see someone you love in pain and not be able to stop it? And how can you find joy, humour and happiness, even in the most challenging time?

Obviously, we can only talk about our personal experiences, and we’re not claiming that we have the answers, or that our experiences will be universal. This is just what has worked for us.

Natasha:

Hi.

Sebastian:

Oh, my God. I get to hear you put on your radio voice.

Natasha:

My very, very professional radio voice. So today we are here, and we’re going to be talking about relationships and chronic illness. We are recording this exactly a week before we get married, although this will be coming out after we get married. And I thought it would be nice today to have a conversation about chronic illness and relationships, because there’s a lot of things that we’ve discussed over the years, and you’re smirking and it’s going to make me laugh, have discussed over the years, but a lot of things that people on Instagram have asked about, and I thought it would just be nice to have this conversation and mine our relationship for content.

Sebastian:

Talk about our relationship journey.

Natasha:

Our relationship journey. So we have been together, how long?

Sebastian:

I think in October … Yeah, in October, it’s now six years, right?

Natasha:

Six years.

Sebastian:

Yeah.

Natasha:

I thought it might be good to talk about how we first started talking about my health in the relation … Do you remember, did I mention it at the beginning?

Sebastian:

I think, you said on our very first date that you … like, you basically listed all your health issues and told me out, because we met on, I don’t know, are we kind of-

Natasha:

On Tinder.

Sebastian:

Because we met on Tinder, and I think one of the very first things you said is like, basically, “This is my deal.” I just remember you saying that you’ve been on a series of, essentially bad dates, and you’ve had a lot of disappointments in the past, so now you’d rather be upfront about this. I remember sitting there and being like, “Okay.” Yeah.

Natasha:

And then we were friends for a bit.

Sebastian:

Yeah. We were friends for a bit, so I think we … Yeah, I think we were friends for like a few months, like four months or so.

Natasha:

And it’s quite funny because, I think the second time that we hung out, I had kept cancelling many, many times because I was quite unwell and I’d thrown my back out.

Sebastian:

Yeah. I know. Exactly, exactly. And I remember that I came over and I think we were … Like, we went Pokemon hunting.

Natasha:

We went Pokemon GO.

Sebastian:

That was the time of Pokemon GO.

Natasha:

And we literally just did it around my building.

Sebastian:

Yeah.

Natasha:

But I was basically lying on the sofa most of the time, because my back had gone.

Sebastian:

Yeah. You were lying on the sofa, and I think we were watching some late night show or something.

Natasha:

Like Jon Stewart or something.

Sebastian:

Yeah, yeah, yeah.

Natasha:

So what was that like for you at the beginning, in terms of hearing about these conditions. You said to me something interesting. So I said, “Oh, back then, you wouldn’t have been able to know if I hadn’t said something,” and you had said that, “No, you could see because you didn’t walk normally.”

Sebastian:

Because I think I met you at the tube station, right?

Natasha:

Yeah.

Sebastian:

And like you were definitely waddling too on the way to the restaurant.

Natasha:

Yeah. How did you feel hearing that, oh, okay, I’m going on a date with someone who has health issues? Is it something that you really thought about? Is it something that made you think, oh, okay, maybe this isn’t even worth pursuing? Apart from the fact that I’m very delightful and charming, obviously.

Sebastian:

No, I didn’t. The thing is, I didn’t really know what to expect because I hadn’t really met anyone with your kind of health conditions before. I will say that I thought, because basically I’ve been in like a slightly abusive relationship before, and I think my first thought was, “Well, haven’t had that one before. Let’s see how this one turns out.” And it was also just, a lot of my friends especially at the beginning, I think were worried about … Well, people can’t see me doing sky quotes, but that you are taking advantage of me, I think was sort of the main concern. And I think that was a big potential issue that I could see. But you know, that wasn’t at all the case.

Natasha:

I think it’s quite interesting because you were a lot more okay with going ahead into a relationship than I was in the sense that I was really scared of you not actually wanting to be able to put up with my things. And so I was kind of like, a bit pushing you away at the beginning, because it’s like, if it starts to get serious, someone’s going to have to properly see all of these things about me that I hate so much about myself, and that was a really scary thing.

Sebastian:

No. I remember you being quite like … you know, keeping your distance. Yeah. And it’s interesting because, also, I didn’t know, because obviously how would I know, but I didn’t know whether this was degenerative or not, so whether it would get worse over time. Then I did some Googling around, and-

Natasha:

But you didn’t read any of my stuff at the beginning.

Sebastian:

No, I didn’t. I didn’t because it would’ve felt like an invasion of your privacy. I mean, you know, you put it out there of your own accord, but I don’t know. It would’ve felt weird because like, I’m a very not online person, so you can … It would’ve been an unfair advantage, I guess. And also I didn’t … I wanted to ask you, like I felt weird bringing up things from what I’ve read about you. You know? I don’t know. It’s strange.

Natasha:

Oh, yeah. I know about this story that you told me about this really traumatic thing, because I read it on your social media.

Sebastian:

Yeah, exactly.

Natasha:

But I think it’s, as well, it almost … I tended, especially back then, to write about the most negative things on social media and that was a way of coping with that stuff, so you wouldn’t have got like a full accurate picture of me as a person if you were only seeing me writing about like the worst bits.

Sebastian:

Exactly. And that’s actually, that’s a really good point because I think … Honestly, I think if I had read some of your blog back then, I think it would’ve been like, “Oh, my God, this is horrible, and this is all negative,” and I think it would’ve given me a very distorted picture. And also, I think one of your main things and why I thought this can work is you always had a good sense of humour with all of this.

Natasha:

Yeah.

Sebastian:

And you know, I remember you making jokes about your health and your party trick as a … What was it? As a four year old of being able to dislocate your knee. And I think that, yeah, that also comes across in your writing, but I think even … Like I think back then on your blog, it was more like earnest writing, like, “Oh, this is bad.” And I think the humour wasn’t as much in there. And if I-

Natasha:

It was more venting.

Sebastian:

Yeah, exactly. It was more venting. And I think if I had only read that, I would’ve had a very different impression of you than from talking to you. I think that meant a lot that you … and I think I said that to you from the beginning, that I can be with you because of the way you deal with it and it never feels like you are putting any of this on me. I know that you’re doing the best you can to deal with all of your issues. You know, then it doesn’t feel … Because I know that you like to ask whether I’m annoyed with you or whether you’re a burden.

Natasha:

He can tell where I am in my cycle, like to the day where I am in my cycle, because I’m like, “Are you annoyed with me?” He’s like, “Check your app.” But yeah, I think that’s a really good point because you got to know me as me, and because you did know about my health in the beginning, but obviously I didn’t tell you everything at the beginning in terms of like how badly it affected me sometimes or how emotionally difficult that was, but I think that probably did come across because I was like, how can someone want to be with someone when I don’t even want to be with myself? And so while I always did want a relationship, it was one of those things where I was like, I was so scared of that and so scared of being rejected because of my health and because I couldn’t do all of the things that a normal person can do. It took me a really long time to trust that you were genuine in what you said and that it didn’t really bother you in that way.

So I think it might be interesting to discuss just how we get along in life in the sense that one of the … So I had put on Instagram a call out for a bunch of questions. Let me just get this open, because one of the most common questions that we had is, how do you deal with the guilt of restricting your partner’s life experiences? How do you manage if your partner wants to be more active than you’re able to? And so I think it might be nice to just discuss, from the beginning, how we navigated being able to do things, not being able to do things, how we’ve been able to be together, because I actually think that my health has really impacted how we are as a couple, because I think it brought us closer from the beginning.

Sebastian:

Yeah. I think just in general, it just meant that we had to, shock horror, spend a lot of time together at home on the sofa/in your robot bed. And I think it’s also just, it’s a bit personality dependent because we’re basically grandparents at this point. We’re in our thirties, but we basically behave like as like an old couple. So-

Natasha:

Including shaking fists at the youths outside the window going, “Youths!”

Sebastian:

Yeah, exactly. When they’re being loud. I think it helps that we’re both very happy being together, reading something, and then talking about it. If anything, I think that it really forced us to communicate from the beginning, much more so than … Because I think a lot of people with dating in the modern sense, I think a lot of it is like you do an activity together, and I don’t know, you play some sports or you do-

Natasha:

You drink a lot. You go out for meals.

Sebastian:

You drink a lot. And I think all of this is like, people show different aspects of their personality in different social situations. Right? And I think this is basically, this just delays getting to know the person in their normal ground state, like what they are in day-to-day life. Because like, when you’re doing all of these activities, it distracts from who you are when you’re tired in everyday life and all of these things. So I think we just basically skipped all of that part and went right to being on the sofa, and yeah. If anything, I think it really meant we had to … Because you had to tell me when it was too much. I mean, now I know, and I can tell from being with you for a while, I can tell when it’s too much for you and when you’re dehydrated.

Natasha:

But that’s more just funny for you.

Sebastian:

Yes. But back then, you had to tell me when it was too much for you, and also, this was like, when we met, you didn’t have a mobility aid, so your crashes were a lot worse.

Natasha:

That’s true.

Sebastian:

Because I remember like … Because we went out, and went to-

Natasha:

Yeah, we did.

Sebastian:

… musicals, we went to the cinema, we went for dinner a lot.

Natasha:

Yeah. We got a lot of chocolates and ice cream.

Sebastian:

Yeah.

Natasha:

A lot.

Sebastian:

Things we can’t do anymore.

Natasha:

No.

Sebastian:

Metabolism slows down.

Natasha:

Yeah.

Sebastian:

I think that also just meant that you had to negotiate your energy budget much more. You had to tell me like, “Oh, okay. I can’t do this. I need to rest now.” I mean, it took me a little while, but after, I could pick up on you being wiped out.

Natasha:

Or when I would push myself too much, which is what I definitely did in the early days as well, because I wanted to go out and I wanted to do those things. And so I would push myself to do things, and then sometimes I wouldn’t say how long I would crash for. It’s like, “Oh, I’m really busy with work.” Yeah. I wasn’t really doing much work at the time either. And so it was one of those things where, over time, being able to really show all of that and navigate that and feel like I wasn’t being judged for it was really important.

Like I remember once we went to … oh God, what are they called? It was like a murder mystery house thing. You were following people around, and it’s an old house in Central London somewhere. You were going up and down these really crickety steps, and they had debris everywhere. And I said to them, “I’m really sorry, I can’t do it.” And they had split us up. I was like, “I need to be with …” Or you know, if we’d been out and we would go to the tube, and I’d be grabbing onto you for dear life. Although, I would freak you out a lot because I would also seem like I was falling every time a pigeon came, so you’d be panicked that I’d dislocated something, but actually I was just trying to move away from a pigeon.

Sebastian:

That’s actually really funny because like, I’m also I think a tiny bit hypermobile.

Natasha:

You are hypermobile.

Sebastian:

And when you see a pigeon, like especially in the early days, when I was helping you up the stairs and so on and so forth, because-

Natasha:

I’d be grabbing onto him when we were walking.

Sebastian:

Yeah, exactly. You’d be grabbing onto me and it felt like you were pulling out my finger.

Natasha:

Oh, no. I was just trying to give you an impression of what my life was like. That’s all.

Sebastian:

Exactly.

Natasha:

So one of the things that you mentioned was there was a fear from your friends, and I think understandably, given your previous relationship, that I would take advantage of you. How did you kind of navigate what other people thought? Because one of the things that I found so difficult at the beginning was everyone was saying, “Sebastian is so …” It’s not all the time people would say, “Put up with you.” Sometimes they would, but that was always what was implied, that you were willing to put up with my many deficiencies, in their mind. So there’s that side of it, but also, every now and then there was like, “Why does Natasha ever come out with us? Why is Natasha never there?” And even though it wasn’t … Sometimes there was, “Oh, Natasha, you really should come out with us more. You should.” And that was never from you. But that also would then put you on the spot if I wasn’t there and people were saying that, so how did you navigate that side of things?

Sebastian:

Yeah, I think that’s … Like, first of all, that also just upset me because I think people, because of your … Back then you didn’t have a mobility aid, so there wasn’t anything that was like, quote, unquote, visibly wrong with you.

Natasha:

And I can be very charming and bubbly and-

Sebastian:

Very on.

Natasha:

On.

Sebastian:

Yeah.

Natasha:

Yes.

Sebastian:

Exactly. So people didn’t necessarily see, because people didn’t see you when you were crashing. So I think that took a while to take seriously and to understand that the two hours or something they saw you coming over for dinner or something, that also meant you’ve been resting in bed for a week before that.

I think so, coming back to the first part of the question, so one thing that always annoyed me is like being portrayed as the martyr, because at one point or another in any relationship, if you’re together long enough, one partner is probably going to become disabled in one form or another, like just with old age. What, are you going to leave your partner when they’re 60 and they have, I don’t know, cancer or something? So that’s one thing that really annoyed me. And I also thought like, there’s something a bit sexist about it, because I wonder if it had been reversed and I had the health issues whether anyone would’ve made a fuss about you taking care of me because that’s kind of expected of you. So that’s the other thing that really annoyed me about this.

And yeah, I remember one episode when we went to, I think it was a Christmas market in Berlin, and I was pushing you around and you were being very fancy with your, God knows how many coats and your little faux fur hat and so on and so forth.

Natasha:

I look very fabulous.

Sebastian:

You look very fabulous. I remember that we went up to this food stand and there were a bunch of girls and they were looking at us like so … or like, looking at you, looking at me, like very obvious, you know, back and forth.

Natasha:

Yeah.

Sebastian:

And like basically, what’s he doing with her? I was so annoyed.

Natasha:

You were. I remember this.

Sebastian:

Yeah. And talking to my friends, I think it took a while for it to sink in, and also, you know what? I think in that sense, you being on … I think you being on Instagram and being a chronic illness and disability influencer helped, because people could read up on your crashes. Right? And I think a lot of my friends actually kind of ended up stalking you for a bit, and then they were like, “Okay, I know this is a real condition.” And I think that helped them to understand what’s going on, but also I had to tell them for a while, and yeah, I remember with some friends of mine, it really took a while before they … I think you had that also in your Conversation with Natasha, it’s like, it’s nice to be asked. Right? But there’s a very fine line between being asked out to things, even though people know you can’t necessarily make it, and feeling pressured to go to all of these social events, although you can’t.

Natasha:

Did you ever feel frustrated or annoyed that I couldn’t go to things?

Sebastian:

No.

Natasha:

Genuinely?

Sebastian:

Yeah. Genuinely. No, not at all. I think the-

Natasha:

Because you got to have a break from me.

Sebastian:

No, no, no. That’s not it. But I think what’s hard is that, because you even told me … And you never made me feel bad about going out, being with my friends or something. I think not that I’m the most like going out person ever, so that wasn’t really an issue, but when I went to see my friends, you didn’t make me feel bad about it.

Natasha:

From my perspective, I said to you from the beginning, I will get jealous, and I do not blame you for going out, and I want you to go out, but there might be times where I haven’t been out for weeks and he gets to go out with people that I really like or do something that I really wish that I could be there as well, and I would have a really hard time with that. I never took it out on you.

But I do remember we had a friend visiting from Canada. His girlfriend was visiting from Peru. They were both in the UK. They went with Sebastian and our best friend, Lucy. They went on a day trip to Cambridge, and I had crashed so hard, and I remember just finding that so emotionally difficult and just being like, “You guys are abandoning me,” and I was saying it jokingly, and I knew they weren’t abandoning me, but it just, there are times where it can be very emotionally difficult. And I think it was because it was all of you as a group, and you only knew each other because of me, and I wasn’t there. And so you guys all came home and bought me chips, so that was nice.

Sebastian:

Yeah. We brought you chips and I think fudge.

Natasha:

So the best way to placate me is just to feed me. But I think it was definitely really noticeable when the pandemic started and we went into lockdown, I was just so much happier because I think, I felt like a big theme of my life is waiting. So if you were out at work all day and then you would go out in the evening, I would just be waiting like a little puppy, excited for you to come home, because I wouldn’t have done anything else. And I really want you to be able to go and do this, but it was a really weird thing to see. Because if I was healthy, I would be going out and doing things on my own. We wouldn’t have to do things together, but just generally, I couldn’t go out by myself. It had got to a point where I couldn’t go out by myself. So I felt like I was really dependent on you to do things, and then I felt really guilty. Should we talk about the burden?

Sebastian:

Yeah. Okay.

Natasha:

Thoughts? I don’t have a good question on that, but I think it’s one of the things that a lot of people have asked about on Instagram. It’s one of the things that came up the most is this feeling of being a burden, that you need help with things around the house, that you can’t do everything that a healthy person could do, and therefore you’re putting things on another person. I’d be curious to hear how we … I know how we navigated, but I’d be curious for you to talk about how we navigated that.

Sebastian:

Yeah. I think it’s very hard for people to realise, because they are not with us in our day-to-day life, so they don’t see the reciprocation and what you contribute.

Natasha:

What do I contribute?

Sebastian:

A lot of admin. No, because essentially I think what we do is that, like I look after most of the household, so I do the cooking. I mean, thankfully we’ve got a bit of help with the cleaning, but yeah, I do all of the domestic, these kinds of domestic chores.

Natasha:

Although actually, I have been able to help more with that now.

Sebastian:

Yeah.

Natasha:

As I’ve been able to, over the years, to build up my energy, I now can do washing up in the day. That’s my activity pacing break. I actually quite enjoy it, which is really weird. I just don’t do the heavy things because I can’t lift them up. And yes, I know, I did put the non-stick pan on top of the cheese grater the other day, didn’t realise that I did that. So sometimes there’s a question of, do you want something done or do you want it done where you don’t break a saucepan with a cheese grater? But so I do that, and I have been sous chefing.

Sebastian:

Yeah, exactly. You’ve been-

Natasha:

And cooking every now and then, as well.

Sebastian:

And cooking every now and then. Yeah. And you, exactly, just helping out with chopping and all of these things. But I think what I wanted to say is that, I think what’s … But you do, like you look after the admin and you are really good at chasing the utilities people on the phone and all of these things. I think we say that we have complementary anxieties and neurosis. Right? Because I really hate talking to … Like, it makes me really anxious talking to people on-

Natasha:

And then you sound aggressive, but you’re not.

Sebastian:

Yeah. Exactly, like talking to official people on the phone, whereas you’re calm. Like you would also be a good lawyer, actually. Well, I mean, you used to do …

Natasha:

I started. Yeah.

Sebastian:

Yeah, you started a Master’s. And yeah, whereas you’re really good at doing all of these things, and you’ve got your anxieties around being a burden, which you are not, and coming back to that, I would say that you’re contributing in your way and I know that you … and also, I just know that you do the best you can, the most you can on any given day, and you’re not making me feel bad about anything.

And also, I think the other thing is that … I mean, I think over time it needs less explaining because I can kind of tell when you’re fatigued and so on and so forth. But especially at the beginning, I think a lot of it comes down to communication, and I think it’s a make or break type situation. A relationship with a chronically ill or disabled person I think requires a lot of communication and trying to really make it clear that, oh, I can or can’t do this, and I think that can be really helpful because, yeah, I think we … I don’t think we’ve ever had an argument-argument.

Natasha:

No.

Sebastian:

And it’s because we’re, and I think, I genuinely think it’s because-

Natasha:

Like about anything.

Sebastian:

About anything, like nothing fundamental. And I think it’s because we are forced to really talk about everything all the time. Yeah. I think about being a burden, it’s not … I don’t know. It never felt like it because I know that you were being open and honest about what you can and can’t do, and I knew that.

And now also emotionally, I mean, of course it’s hard for me to see you suffer, basically, right? There are days when you are in so much pain or so fatigued that you can’t really talk, and despite you writing funny-

Natasha:

That was funny.

Sebastian:

… notes in red marker on a piece of paper, like that’s really hard to see, but that’s … Yeah, it makes me sad, and I wish that that goes away. When you love someone, that’s just the deal. It’s not being a burden.

Also, I mean, honestly I think a lot of it comes down to those are just the cards you are dealt. It’s not your fault. You’re not being deliberately in that much pain to annoy me. Right? Who would do that? More than anything, the burden thing is your insecurity, and that every once in a while comes through and is exacerbated about once a month hormonally, so.

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Natasha:

We were talking about when I would write you notes. I think I had a period of three days where I couldn’t talk, and that was the longest that that’s been. And I couldn’t talk.

Sebastian:

Yeah, that was scary.

Natasha:

That was scary. And I talk a lot. I love talking. It’s like the one thing I could do. And I could see how upset you were. And this happened when someone grabbed me at the theatre and you got really quiet and you got really upset as well. And then I get really upset that you are really upset because of me, even though it’s not something that is my own fault, that then almost exacerbates. And now it’s only when I’m really, really bad, really bad. I’m like, you know what you signed up for? Do you still want to be with me? And is that just thing of, at what point is it going to be too much and too annoying, but I think as you said, it really comes down to that, it’s because it’s a thing about myself that I hate so much, that I struggle with so much. Or why would anyone else want to put up with it?

Because I don’t want to put up with it. It’s really exhausting.

And the other thing we were talking about different roles that we have, there’s also, we’re both there for each other emotionally as well. It’s not just, he does the cooking and cleaning. I am there for him for anything that he needs just as long as it doesn’t require heavy lifting, except when he has COVID and then it requires heavy lifting. It was interesting. So Sebastian has just tested negative for COVID, after having COVID. And I noticed that in my head, I was like, he looks after me so well every day, all the time, but I really want to look after him. And then I went crazy and was doing everything. I was like, stay in bed. I’ll make you porridge with pretty patterns on it. It was almost like it was my turn to be able to look after you, but just on a day-to-day basis with, it’s not just those physical things, it’s how we are there quietly spending time together or doing small thoughtful things for each other that I think are often overlooked.

Sebastian:

There’s this cliche in Hollywood films and series and whatever that people get one another, these expensive gifts and these grand gestures and all of these things, I show my affection by cooking for you, and getting you water when you sound like a baby, because you’re dehydrated. You calm me down when I’m being stressed about work or that you go over an email that I’ve written because I’m self-conscious about-

Natasha:

He walks into my room four times a day with a computer and I’m like, Natasha’s office is now open.

Sebastian:

So I think that’s far more important.

Natasha:

And we’re both very cuddly affectionate in that way. It’s like, we are just very affectionate and silly with each other throughout the day.

Sebastian:

Oh yeah. I think if people saw us through the window, they would think we are like-

Natasha:

Very weird.

Sebastian:

We’re very weird.

Natasha:

We do little dances together all the time.

Sebastian:

Yes, we have at the end of a series, for example, when we watch TV, we’ve got our little dances for the outro.

Natasha:

It’s one of those things where we both need alone time. Just generally, we’re both pretty quiet at home. We talk to each other a lot, but we’re both very happy being quiet together at home. And we have very similar hobbies and interests. Well, no. He’s a physicist and mathematician. We do not have similar interests. I think it’s one of those things of, we can get so fixated on what we can and can’t do physically. I always know when you’re not ok, and it’s usually a day before you admit you’re not ok. And so it’s like, how do we really, you’re smirking because you know it’s true.

Sebastian:

Yes.

Natasha:

Yeah. I think it’s, we have learned to read each other and how we get around in the day. We kind of have our roles in the house and of the things that we know that we do. So for example, we’re planning the wedding, decorating the flat when we moved in. All of those things, I do all of the things and I give you options to then we pick from things. So there’s never any resentment over things. If anything, it usually comes down to me, wishing that I could do more.

Sebastian:

I think of anything that’s very understandably psychological on your part. To me, it never felt that way. It’s just you as a person and either someone accepts you or doesn’t.

Natasha:

I also think what it comes down to, is that fundamentally we just get on very well.

Sebastian:

Yeah. I think what really helps, for example, I could see it being difficult if I were some super extroverted person, because I think we would joke that we’re extroverted introverts. We can be around people and enjoy that in small doses, but it also tires us out a bit. And I think it would be very different if we were super different personalities and I really needed to be out and about all the time. And I don’t know being active. I think it really works because we’re just very similar in that respect. As you said, we enjoy our quiet time and we’d happily lie on the sofa next to one another and just read all day.

Natasha:

And we’re both interested in a lot of different things. So we’re always learning about new things and thinking about different things and discussing ideas. And so it is not about those physical things. And then because Sebastian is happy to just be quietly there when I can’t do anything else. And he can tell when I’m really bad, because he’ll suddenly be like, sofa fort time, and it’ll cheer me up and make me a little fort. He always find, I’m going to cry. He always finds ways to make everything always just feels very special and sweet and affectionate.

And so it’s not about grand gestures every now and then, it’s more just we fundamentally get on each other as people. And we have a very similar sense of humour. And we can turn everything into a joke. And so it can be really funny. When I couldn’t talk, I was making funny notes, and I could see in your face, you were very unhappy that I couldn’t talk. And it was really funny. My mum’s like, he must be so happy, you’re not talking, what a fun break for him. And he was like, no, I actually missed it.

Sebastian:

No, I know that was funny because your mum was joking, that, oh he must really like you because he misses you talking.

Natasha:

But I think we have been able to find ways to make things comfortable and affectionate, and it just is of part of how we get on. And one thing I will say, I was talking to a friend about this years ago and she said, you don’t need to be grateful. And I said, no, I think it is important to be grateful. Because whenever, I say, thank you to you all the time and I show you and I tell you how much I appreciate, and no one is making you do this, you do this because you want to. But at the same time I don’t ever want him to feel like I’m taking it for granted. He does this because he loves me. But at the same time I wouldn’t just wave my hand and be like, well, he absolutely should be doing it, and I’m not going to feel grateful for it at all, because I think that’s where the resentment comes.

I also have to recognise that Sebastian is a human being and he is a person with his own needs and his own shit going on. But it’s really important to me that I show him that I appreciate what he does.

Sebastian:

I think that doesn’t only apply in this context because of disability or chronic illness or whatever. I think just in general sharing that you’re grateful is a good thing because if someone’s done something for you, they don’t have to do that. Just showing people appreciation. And it really greases the gears. It shows that you don’t take it for granted. And I think, yeah, as you say, that’s something that I think the day you take someone for granted and you don’t show them that you’re grateful in one way or another. That’s when resentment starts.

Natasha:

I used to buy you a lot of presents at the beginning.

Sebastian:

Yeah. I know.

Natasha:

And every time I would have a crash, I bought you a present.

Sebastian:

Yeah. I’ve got a lot of nice looking at it, a lot of nice Folio Society books because of that. But you really didn’t have to do that. And I know why you did it.

Natasha:

Because I didn’t feel like I could physically do something. And that was my way of showing that I was grateful.

Sebastian:

I enjoy the notes though. You write very good notes.

Natasha:

Thank you. I actually think you write better notes than me. I’m a very, self-conscious emotional writer and he’s actually much better at it than I am. But some people will say you do things for the people that you care about. And I completely agree. And it’s not saying that I don’t deserve the help and that I have to be submissively grateful for something. But I do think it’s really important to just-

Sebastian:

To acknowledge that-

Natasha:

To acknowledge it. So I was thinking we could also just do, because we had a bunch of questions, I was thinking we could do a quick fire.

Sebastian:

Yeah.

Natasha:

Okay. Are there any ways to prevent compassion or caregiver burnout of the non-disabled partner? Do you ever get sick of me?

Sebastian:

Why, I can’t say it here, can I? No, I’m joking. Nah, not at all. I think burnout that really comes down to what we talked about earlier in terms of you, I know that you always do what you can and I’m trying to support you in lifting the heavy pans. I think what really prevents the burnout is knowing that I don’t get annoyed. Your favorite question. I think that really comes down to, I know that you are quote, unquote, pulling your weight and you’re doing the best you can, and also that you are there to support me emotionally. And also I think it’s something, I mean, hopefully you’re in a place that you can talk about this honestly, and you can say, hey, this is also really hard on me as a carer. And that shouldn’t. Ideally you would be able to talk about this. And I feel, for example, I feel like we can talk about this also afterwards. So for example, when you had your three days of basically not being able to talk and I think that’s the worst I’ve ever seen you, was actually really scary.

Natasha:

You were really upset.

Sebastian:

I was very upset, but the thing is in the moment I felt like we had to deal with it, but afterwards I was upset. And then we talked about it.

Natasha:

And I think the other thing with that as well is that if we’re talking about things physically, so I am able to do more now than I was able to do before. But so for example, I might have said, we’ll try and plan for some easy things for me to do when we know that you have more work or if you have to go out for a work, then we try and plan around that so that he doesn’t have to go out and make dinner. So whether that’s a really easy thing that will take me a few minutes to make, so I’ve got something ready for him or whether it’s just like, okay, we’re getting a takeaway, anything that means that, okay, we’re not going to do washing for a while. We’re not going… Anything that it’s about being flexible. And also recognising that you work full-time, you have to do more around the house.

And so how can we take some of those things off your plate? Give things to me that are more feasible to do and of think about it that way. So for example, when you had COVID, it was really important to me that I made fresh healthy meals for you while you were unwell. So I have this amazing by the way, Pasta Evangalist ragu, but all I had to do was heat it up. And I had chopped up onion in the freezer and we had some things that we could literally put in the microwave because there was some ready made meals. And so it just meant that was something that you didn’t have to do, that I could do, but it didn’t push me too much to do. And I think being really aware of, we don’t formally sit down and think about what we’re doing that week and who can do what when, but we do, especially around food prep and anything big, we do try and figure out if there’s anything that I can do and I can plan my day around that.

So for example, if I know I have to do more, I’ll make sure I don’t have meetings that day, or just trying to figure out how to balance Sebastian’s time and energy and making sure, for example, at the end of the work day, he has an hour or two by himself on the sofa to decompress and he watches something in the living room. And so there are things that we have just naturally fallen into over the years and just making sure that we’re both respectful of what either of us can do at any given time.

Sebastian:

Yeah, exactly. I think it’s just, when you feel like it’s overwhelming that you find ways of maybe, because the biggest thing is time, right? For all of these things, what is it? Is it worth you feeling overwhelmed over something or are you in a position that you can maybe cut back on it or outsource it basically, right? Cause that’s where it is. If we get a ready meal or something, it’s basically outsourcing it, you don’t have to do it and well with COVID, I couldn’t, it’s just finding ways of getting some breaks in there at a time when you feel like it’s getting too much and not feel like you have to power through.

Natasha:

Another question. How do you navigate moments where a flare up might lead to you being more emotional or volatile? I’m going to turn that slightly around. How do you deal with it when I’m more emotional because of a flare up?

Sebastian:

I think I become more of a shmerel So just to translate, that’s trying to, being a bit silly.

Natasha:

He always just makes me laugh.

Sebastian:

So mostly I do little dances and try to cheer you up.

Natasha:

And you just open your mouth really wide.

Sebastian:

Yeah, exactly. Pulling faces. I think just in general, not that I go into this intentionally, but I think I try to be a bit more attentive,

Natasha:

But it’s funny because when I can tell sometimes that you can tell that I’m not feeling very well and you get extra silly. I’m like, you don’t have to do that.

Sebastian:

Yeah. Well I sit with you on the sofa.

Natasha:

I think we’re quite lucky in the sense that I don’t take things out on you. A lot of people when they’re having a hard time. Their default is to lash out at other people, whereas I’d rather just being also to myself.

Sebastian:

Yeah. That’s a really good point because again, it also comes down a bit to personality I think. And that communication really because yeah, you are not the type of person who just takes it out on me and gets all aggressive and shouty and whatever.

Natasha:

The only thing I do is I get a bit snippy.

Sebastian:

Yes.

Natasha:

Actually just one thing I will ask about is I was so paranoid whenever we went to stay with your mum because we would go in December, and flying to Germany. Flying was hard for me anyway, I stopped going because I couldn’t handle the flight for a while, and it was so cold and I couldn’t communicate with your mum until this year because now I can talk to her in Yiddish, but often I would have to spend almost the entire trip in my room. Was that weird for you? Your mum was meeting me, we couldn’t communicate without you. And I was just existing. How was that? Because it was really weird for me. And I asked you for years. Are you sure your mum’s okay with me?

Sebastian:

Yeah. Funnily enough. I think if anything, she asked me more than once, whether you are okay, and yeah, no, just making sure you’re okay and if okay/not okay. Cause you were crashing out. I think she was just trying to make sure that she’s doing everything she can to make you feel comfortable. I think, we’d been together for two years, maybe when we first went to Germany. So at that point, I’ve told her what your deal is.

Natasha:

And she said to me, last time we went, because now I can understand what she says. She’s like, oh Sebastian must really love you. He gives you his sofa because I have your sofa in the living room and she’s a very sweet, and I’m really looking, she’s going to be here in less than a week. So I’m really looking for, because she’s never been to visit us here. So I’ll be really nice. And yeah, I was very hung up on her, not being okay with me because of my health, but that wasn’t actually an issue. And I think as we’ve said over and over and over again, it comes down to communication and I think there’s a way of explaining things. Everyone needs things explained in different ways, but I tend to try and be very clear in explanations.

Sebastian:

I think also my mum gets the fatigue side of things because well, at this point almost 10 years ago she had cancer and had chemo and from the chemo, she still has not to your extent, but she has fatigue as well. So I think she also gets it from that point of view, maybe a bit more that you need to rest. And I just-

Natasha:

I was trying to get her to pace when we were there last year.

Sebastian:

And if anything, because my mum, I think, well, she also had COVID earlier this year and she’s definitely overdoing it. And I think that also helped in a sense in terms of awareness and yeah, she’s definitely the type to say if anything, I would say she’s too careful in telling me to rest and convalesce for a long time.

Natasha:

This is where we agree on things. So it’s very good.

Sebastian:

So I think in that sense, my mum and your mum are probably very similar.

Natasha:

Yeah. Another nice question is, are there any ways that chronic illness has brought you together as a couple?

Sebastian:

Yeah, definitely. I would say chronic illness really forced us to talk about what we can and can’t do openly and honestly from the very beginning-

Natasha:

Sorry and what we want and don’t want in our lives as well.

Sebastian:

Yes. So I think, for example, to me, it’s always interesting how some people can get married and never talked about wanting or not wanting kids, and things like that. And I feel like we had pretty much all the big conversations in the first year, first six months, something like that. So I think if anything if it works, this just means that you are forced to communicate constantly. And what is it, manage expectations.

Natasha:

But also I think that it made us just closer because you saw me from the beginning. I was a mess a lot of the time. It’s very intimate having someone look… And we didn’t talk about this actually, but it’s very intimate having someone sometimes you need help to get in the bath or you need help getting changed, or that’s a very intimate thing and you feel very vulnerable and you need to feel very safe with someone and comfortable with someone to be okay with that and not feel like you’re being judged and not feel like you are… So I think it made us very, very close. And to be honest, when the pandemic happened, loads of people you saw complaining about being stuck at home with someone 24/7, we were like, we’ve done this for years.

Sebastian:

Yeah, we’ve done that for years. And also if anything, I felt like yay, social pressure is off, I don’t have to see people.

Natasha:

And we genuinely still have not got sick of each other. And so it’s one of those things where it’s like, when we’re working in our separate rooms, we come in and have little visits and it’s just really nice. So yeah, I think those are some of the ways that it made us closer. And I’d like to end by asking you to get vulnerable for a moment. She says somewhat flippantly. I never thought that anyone would want to be with me. And I could not imagine that I would be getting married next week. I know there are a lot of people with chronic illness that feel like there is never going to be anyone out there that will understand and wants to be with them. And I mean, dating is bloody horrible anyway, it’s just such a horrible thing at the moment anyway, but what is your message to anyone that’s listening that feels like no one will ever want to, for want of a better term, want to put up with their chronic illness, will be able to do that.

Sebastian:

So the thing is that relationships and dating are just hard in general anyway, it ultimately really comes down to everyone as individuals and finding the right person for you, which is hard anyway, whether you are disabled, non-disabled, there’s always be people who can’t deal with things and they’re just not your people. And so also just from my perspective, I think that this really brought us closer together. And so for example, I think you said that earlier that it’s also very intimate. So for example, when Natasha’s too tired, then I have to pull down her leggings for her because she’s too tired to do that. I think also just in general, it really means we have to, which I think we’ve been trying to drive home in our conversation is that we really had to talk and communicate a lot and think if it works, it really, really works.

Might not look like Hollywoods or like films and TV are trying to sell you, but who cares, if people looked at us, they would think we’re shmerels. Also just means because we’re communicating all the time, it really means that we’re very clear about what we expect from one another. And I think there’s not really a case of where, except in very rare occasions where one of us is disappointed in the other because we didn’t make it clear or thought that we can magically read each other’s minds, which is, I think is a big problem in a lot of cases, the thing is also, ultimately everyone deserves to be loved and deserves respect. And just because one person’s ill doesn’t change anything. For you it’s been really hard to accept that you deserve that. And you found that really difficult, I think at the beginning. So took you a full six months or so to accept that.

Natasha:

Oh, I think it was years.

Sebastian:

Fair enough. And I think it’s also just being flexible and open and understanding and finding humour and joy in things that is really important. And we all bring different things to the relationship to the table, and whether ill or not. And it’s about the person that you match with. And yeah, we’ve got actually that reminds me of one of the, so we had to write our small little wedding blessings. That’s part of traditional Jewish wedding, but we couldn’t do that because I’m not Jewish. And so we had to write our own and one is, may your neurosis and anxieties remain complimentary so that both of you together form a more or less functional person. So in that case, we really just, I think we really just match one another. So what stresses me out, doesn’t stress you out and vice versa. So yay.

Natasha:

Yay.

“This really brought us closer together” – navigating a relationship with chronic illness

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