By Mirren Buchanan (she/her), in conversation with her partner Andy (he/him)
Hi! My name is Mirren and I’m a 19-year-old student at the University of Glasgow. I have a seizure disorder caused by my nervous system not functioning as well as it should, and I’ve previously written for the LUNA Project about the loneliness I’ve faced through having a chronic illness. I used to have multiple seizures a day and sometimes couldn’t bear the thought of leaving my flat on account of how many times I had collapsed in public. Luckily, I’ve been doing so much better for the past few months, a lot of which is due to getting a proper diagnosis but also through support from the people closest to me, like Andy.
Me and Andy have been together for a year and a half. When we met, I thought that my illness was already over but within a few weeks of our first date I was back in hospital. It was quite tough for me at the beginning as I was so fatigued by everything, but we carried on dating and have been living together for the past two months since lockdown was introduced. As most of my seizures happen at night, Andy has been with me for almost every single one of them. He was happy to have a conversation with me about what effect having an illness has had on our relationship.
What was your first understanding of my illness?
‘Emm, well at the very start of our relationship – I think we’d been on two or three dates or something – you were in hospital and I said I’d go visit you. I didn’t really understand what it was but you didn’t really get what it was either. My first experience was when I was in the [hospital] room and you told me to get out because you were seeing faces and stuff,’ (one of my symptoms is hallucinations that have occasionally been quite scary) ‘and I was like okay, that’s weird; so I just kind of went along with it, I didn’t really know what it was but I kind of went along hoping that you were actually alright.’
‘Not mental?’ ‘
Yeah, not crazy, I didn’t know if you were a bit mental.’
Did it change the way you thought about me? Like obviously we met and I wasn’t ill on our first few dates or anything, but then you saw me suddenly quite... unwell.
‘Emm, not really. I was a bit worried because I had previous relationships and I was in and out of hospitals, and that was kind of annoying. Not annoying, but just like you kind of took it all in.’ ‘Yeah, it’s not ideal.’ ‘It didn’t change my opinion on you because it’s a lot different, and I realised that it was something pretty new to you as well, it didn’t seem that common.’
What effect did it have on you? If any.
‘At the start, not much. Later on it became a bit stressful and stuff, but at the start it wasn’t that bad because I knew your family was there and I was in a place where I didn’t really have a lot of... not authority, but I didn’t have a say in what to do?’ ‘Yeah, you didn’t really have a lot of responsibility for me or anything because it was all very new.’
You’ve already mentioned it, but what was it like visiting me in hospital for the first time? Any other thoughts on that?
‘No, not really. I was just glad you were okay, it was a bit weird when you asked me to leave but it's not – I just didn’t know why, because obviously you were freaking out and things.’ ‘Yeah, I didn’t really want to explain it.’ ‘You couldn’t exactly tell me.’
How does my illness affect our relationship, in your opinion? No right or wrong answer, just say what you feel.
‘It’s a struggle. Well, during its worst times it was a struggle; the only times that we’ve had any kind of strain on the relationship could be when I was first starting a new job, when I was having to choose – I'd been unemployed for so long and then finally got a job and then one of my first weeks back, I had to come in [to see you] because you were in hospital, that was a difficult choice to make.’
During the week in question, Andy had taken me to hospital and then driven me home at 5am, making him miss work the next day because he was exhausted from being up all night. This was his very first week at a new job and a difficult moment for both of us as I began to realise what a toll my illness was taking on him too.
Does it have a lot of effect on your sleep? Obviously because I have my seizures mainly at night.
‘Oh yeah, that was another thing with starting a new job and its three o’ clock in the morning and I’m having to get up and call an ambulance and stuff, and call NHS 24.’ ‘Yeah, not ideal.’
How does it make you feel when I am at my sickest, or when I was at my sickest?
‘I mean, not great. (Laughing) But, I think it’s just general worry, when you think it's as bad – well you think it's getting better, and then all of a sudden it just gets a lot worse, and you just don’t know how bad it can get. Like if it's going to escalate a lot more than it already has.’ ‘Yeah. So, worrying then?’ ‘Worrying, is the main part.’
What do you think of all the hospital trips I’ve had to take? Was it annoying? Was it inconvenient?
‘Emm, well yeah no one really likes a trip to the hospital, especially because it’s the middle of the night, it's not just like at times you're going to be awake anyway. When something like that happens you're on hold to NHS 24 just hoping that you're going to be okay, so that you're okay but also so you’re not up until the next day.’
‘What about when you’ve taken me for a hospital appointment, which was in the day, what was that like? When you met my neurologist. Do you remember?’ ‘Errr, yes.’ ‘Ages ago.’ ‘Yeah, in Glasgow. I thought it was okay, you took me just in case there was anything you missed out because I’m watching you have the seizures, you're not really watching them yourself.’ ‘And I’ve got memory problems as well. It was good to have you there.’ ‘The guy (neurologist) seemed pretty understanding. He kind of knew that you weren't talking s***, you know.’
‘Yeah, he’s a good doctor.’
Can you think of any positives to our situation? And it's alright if you can't obviously.
‘It's made us a bit stronger, given us a bit of security so we know if anything else does happen then we’ve got each other's backs. Like if you got sick for another reason or if I got really sick, it's not like you could be like, “This is too much.” (Laughing) ‘I don’t think I could really. I guess it gives both of us a deeper understanding of stuff like this, and the whole – it’s a bit of a cliché but ‘in sickness and in health’, I guess.’
It's worth mentioning here that Andy suffers from depression and anxiety, both of which can be just as debilitating as my own illness and sometimes even more so. We both do our best to support each other, but that can mean that trying to stay healthy can feel like a bit of a balancing act at times.
Would you change anything? No right or wrong answer.
‘Well, I’d rather you didn’t have this. I’d rather you weren't sick and were completely healthy.’ ‘For my own sake?’ ‘Yeah. But no, there's not anything I would change.’ ‘Good.’
What advice would you give to past you going into this relationship?
‘Purely about the sickness and nothing else?’ (Laughing) ‘Just – I mean you could put in other things because this is about our relationship as a whole.’ ‘I don’t know. I think... Nah. I think I was quite happy, because you find things out in your own pace, and you don’t want to spoil anything. Spoilers, you know?’ ‘Spoilers, she's going to be in hospital all the time!’ ‘There’s no point where I was like, “Aww maybe I should leave her”, or anything like that. I don’t need to give myself any advice.’ ‘That’s good to know, thank you.’
Final question, is there anything that you would like other people to know about being in a relationship with someone who has a chronic illness? Any advice, any thoughts. ‘I think it's just important to not be a massive worrier. Like when someone's got an illness, all their family and all their friends are going to be worrying about them, and I think it's kind of your job to put a bit of normal into their life, and just try to keep them – like make them feel like they're not sick all the time.’ ‘Yeah, that’s nice. Like treat them normally?’ ‘Treat them normally because everyone else will be so worried, and you can be worried but just try not to talk about it so much and go crazy.’ ‘I guess it is important, though, that you discuss your worries in a relationship.’ ‘Yeah I know, we’ve had the discussion; see when you have a seizure, I hold your hand and after I make sure you’re okay, but if I was all like, “Do you want me to call NHS 24, do you want me to call your mum”, that’s just a lot of stress.’ ‘Yeah, it would be a bit counter-productive, because the whole thing with my seizures is that the more I stress the worse it gets, so I guess that is a good approach.’
‘What about chronic illnesses in general, rather than my specific one?’ ‘What do you mean by a chronic illness?’ ‘Say someone had epilepsy, or Crohn’s disease, or even an eating disorder?’ ‘I think it's important to know how to deal with it, just communicate and ask them how they would – like when you said before, every time you have a seizure someone gives you water, you don’t need water, but it's come to a point now where you want water every time you’ve had a seizure; when you’re out and about and you don’t have water you feel weird.’
'Yeah, that’s true.’ ‘You need to discuss what your needs and wants are.’
‘That’s good. Any final thoughts? Anything you want to add that you’d like in the article?’
‘Love you too.’
I’m very grateful to Andy for helping me with this article, and for supporting me in daily life too. Things would be a lot more difficult without him. Going into writing this, I felt a bit daunted as I don’t feel like I’m nearly old or experienced enough to be giving relationship/life advice, but if I would suggest anything it would be that open communication about your condition and the support you require is absolutely essential. If your partner has a chronic condition, then ask them what they need but do your own research too! It can be exhausting being asked the same questions repeatedly, and you may find something new that neither of you had thought about before.
Finally, the Modern Love column by the NY Times has some great articles on inter-abled relationships, including ‘How 30 Blocks Became 30 Years’, which you can read at: https://www.nytimes.com/2018/01/05/style/modern-love-how-30-blocks-became-30-years.html . I would also recommend Shannon Barry’s instagram @barry_happy; Shannon suffers from Crohn’s disease and writes beautiful prose (and occasionally poetry) about her long-standing battle with chronic illnesses. Many of her posts are about her current relationship and how they both learn to cope with her condition.
Lots of love, Mirren x
(originally published 5/07/20)