Episode 127: Spoonie Artist & Activist Mimi Butlin

Episode 127: Spoonie Artist & Activist Mimi Butlin

Overview

In 2012, while studying at university, Mimi Butlin contracted viral meningitis — from which she never fully recovered. Since then she has been diagnosed with Ehlers-Danlos syndrome, fibromyalgia, POTS, and ME/CFS (as Mimi wryly notes, “a really lovely bunch!”). For years, she felt completely alone and that convinced she was responsible for her pain. In 2018, she started the Instagram account @CantGoOut_ImSick, a platform where she posted drawings of what living with illness was like — including portraits of other chronically ill women who had gone through similar experiences. Because of her work, she has been featured in Women’s Health magazine, Grazia magazine, and on Refinery29 and Bustle. Recently, she collaborated with disability charity Leonard Cheshire to create the #DisabledLooksLikeMe campaign to raise awareness of invisible disabilities. Mimi is very proud of what was achieved throughout the campaign, which saw disabled influencers, creatives, and celebrities — such a Selma Blair and Sinead Burke!! — wearing her t-shirts and supporting the campaign on social media. She is currently taking a break from her work in order to accommodate her health (and wow, can we relate), but she’s extremely grateful to the people she has met along the way, who have helped her accept her conditions and feel proud of who she is.

Takeaway

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Transcript

Can't Go Out I'm Sick @cantgoout_imsick Mimi Butlin Amelia Butlin artist activist spoonie disability Uninvisible Pod

Lauren: All right, guys. Thank you so much for joining us. I am here today with the lovely Mimi Butlin. You may know her as @CantGoOut_ImSick on Instagram and across social media platforms. She's an artist. She's also living with chronic invisible illness, and she's going to talk to us about it. Mimi, thank you so much for joining us.

Mimi: Hi! It’s fine. I'm very happy to be talking to you, Lauren. 

Lauren: Yeah, it’s really great! We connected online, as I have with so many of my guests. I reached out to you specifically because so much of your work is really tying in what's political about living in a chronically ill body. Really capturing this moment we’re in, I feel. And you've been having great response from it, haven't you.

Mimi: Yeah, I have. I didn't really mean it to be political, but I feel like it just naturally kind of turns into that, because I feel like everything is political. This definitely is.

Lauren: Absolutely. And when you live in a body that the world isn't designed for, I suppose. And particularly, depending on how you identify as well. And you’ve really honed in on that with your work because of the people who obviously interest you. But I think it's fair to say it's making a point, and and certainly the Spoonie community is responding. So it's very exciting to have you on the show!

Mimi: Oh, thank you. 

Lauren: So let's talk about you. When and how did you first realize you were sick? And what are we working with here? What have you been diagnosed with up to this point? 

Mimi: I have Ehlers-Danlos Syndrome, fibromyalgia, and POTS syndrome. And then I have been diagnosed with ME, but I wouldn't necessarily say that I have that much anymore really. I feel like I definitely did at one point, but I do feel like that has gradually…

Lauren: … subsided a bit? 

Mimi: Subsided a bit, yeah. I would say that I’m a lot less fatigued, a lot less tired. Obviously I have ME symptoms, but then I am in pain.

Pain is definitely my biggest symptom. That’s the thing that controls me. 

Lauren: It's interesting that the fatigue has subsided. Whenever I hear people who have been diagnosed with ME … it seems that doctors in the UK are a little more open to giving that diagnosis in the first place. But it also seems, on the flip side that, there are people like you who are in remission from ME, if you will. And it makes me wonder if the diagnosis was even correct in the first place. Because maybe it was fatigue related to everything else. We don't even know what ME is yet; it's all so nebulous, isn't it.

Mimi: Yeah, especially with me when I was first sick … I was getting better and I'll talk about that in a minute. But they didn't know I was getting better. It seemed maybe a knee-jerk to me.

Lauren: It became a catch-all.

Mimi: That’s really all we’re going to say … and bye, bye.

Lauren: Yeah, because from what I understand, in the UK, there's not really much of a treatment offered for ME either.

Mimi: When I got that diagnosis of ME, I was in a really bad place at that point, and it was so new to me, being that sick for such a long time. I remember the doctor saying, “I think you’ve got ME and you’ll have it forever. So you're gonna have to get used to it because there’s nothing we can really do.” I remember just being, like, oh … ! Just the heartbreak that you feel when you get a diagnosis like that, something like that, and you know that you're gonna have this forever. And there's nothing they can do. You're just, like, how is this even a thing?

Lauren: Like, how is this possible?

Mimi: I hadn’t known of anyone getting something like this before. No-one in my family I knew had ever gotten it. I mean, as it turns out … because of me, because my parents who would speak about me, and my mum posted things on social media … it turns out that actually a few people do have these things. But at the time, we didn't know that.

Lauren: And that you're left to your own devices as well. I mean, to be sitting in front of the doctor for possibly the first time in your life being told that they can't help you … has got to feel extremely frustrating. 

Mimi: Yeah, it's a horrible feeling. Shall I talk to you a bit about when I first got unwell? 

Lauren: Yeah, tell us! 

Mimi: So I was at uni. I’ve always been quite sensitive to things, and I was a bit of a sickly young person. But I’d never gotten really unwell. I've had a few weird things. I would always get these hive-type rashes, and l would get motion sickness. But not like normal motion sickness. I would literally be in a car for about a minute and I'd be throwing. I was just kind of a fragile person, I think.

But anyway, I was at uni and I was waking up and I couldn't see.

My vision was so blurred, and I was having awful migraines. I couldn't function at all. I remember being so confused, thinking I was going blind. I was going to doctors where I was at uni, but no one could really tell me what was going on. And then I got really bad and I was in hospital, and they realized I had viral meningitis. But then I was healing. So they were, like, “Okay, you’re fine. Bye!”

Lauren: Again!

Mimi: Yeah! I was a bit better; I wasn't in such severe pain, like screaming kind of pain, and throwing up and stuff. But I still wasn’t okay. And then I just didn't really get better from that point. I was still ill, and still in a lot of pain. But most of the time, it wasn’t agonizing to the point of being in hospital. I would go in and out of stages, but it didn't improve.

Lauren: So it sounds like you already had a predisposition, and then the meningitis could have been a trigger for a lot of these illness.

Mimi: Yeah, I think so. Because I did actually get a bit better at one point. And after about a year-and-a-half, I started to be able to function. I was still in pain, but it wasn't really that extreme. And I basically thought, okay, I have to manage this. But I can live quite normally. I was studying again. I felt like I was becoming part of the world again. And then I got Epstein-Barr virus, and gastroenteritis a couple of times. That was about five years ago, and I haven't had a single better stage since then. 

Lauren: Well, it’s as if your immune system were compromised. And of course, you were already more susceptible to these illnesses. I hear so many stories about people's onset being at uni. I've said this in a few interviews, but I wonder whether that culture of overworking and crashing and pulling all-nighters, and stuff … it’s so encouraged at uni. And it seems when we're in our late teens or early 20s, we think that we're invincible, and we can study all night, and that so many of these illnesses have their beginnings in this kind of environment. It doesn't surprise me entirely. It makes me think, is that the culture that's getting in the way? Aside from the fact that you had these viral infections, the culture probably wasn't supporting your health either. 

Mimi: Completely, and that's a part of why I blamed myself so much when I wasn't getting better. Because I was, like, it was completely my fault that I got myself to that point where I was so unwell. I was going out all the time, I wasn't eating well. I just thought that I could do whatever everyone else was doing. And everyone else was fine. So why wasn't I fine?

Lauren: But it's interesting that you say you blame yourself. This immediately becomes political because I say if you were a guy, if you identified in a different way, would you even be beating yourself up in the same way? Would the system be rigged in your favor?

Mimi: Yeah, no, you're right.

Lauren: So how old were you when you actually got the EDS and fibro and POTS diagnoses? Was it long after this? 

Mimi: The fibromyalgia diagnosis came about a year-and-a-half after. No, maybe like a year. And then the EDS came a bit later. The POTS might have come first. And then it was fibromyalgia, and then it was EDS.

Lauren: And these are all co-morbid conditions. so it makes sense that you have them all.

Mimi: Yeah, apparently, you don't ever have one.

Lauren: Especially with EDS, because of so many of its additional symptoms, and because there are so many different types. It’s linked to so many other conditions, particularly with regard to chronic pain. But it sounds like you weren't really offered a ton of support after these diagnoses?

Mimi: No, I really wasn't. And the thing is, as well, my family is quite wealthy and they could have got me treatments. I saw the best people, I had the resources to get the help that was out there. But it just wasn’t there.

I was always thinking, there must be that help out there. But we just can't find that person. There has to be someone who can fix me.

I think that feeling of … there must be someone out there who can help me but I can't find them … must be 10 times worse than money being the reason why you can't find them.

Lauren: Obviously you live in the UK and you have access to the NHS, but you were able to also access private practice doctors because of help from your family throughout all this. This is where we have to appreciate that level of transparency as well, because I think so many of us really do realize that what we have access to when we're that desperate isn't what's available to everyone else.

Mimi: Yeah, we have the NHS. And I think about people who don't have something like that. I'm one level of privilege; I would have the NHS and get access to private doctors. Then there's a privilege of just having the NHS. And then you think about people who are in countries where they're living with chronic illnesses, and they don’t have access to anything. 

Lauren: Oh, you mean like the US?! Because I think we're the only one left that hasn't figured out how to get health care to everyone as a basic human right.

Mimi: Yeah.

Lauren: It’s unbelievable. So what steps have you taken? You've gotten these diagnoses, you haven't been given a ton of support. How have you been able to manage your health up until this point?

Mimi: I've just tried so many things. But I think I'm getting to the point now where I've tried acupuncture, physio [physical therapy], I've tried so many different types of diets. I've tried a lot of holistic approaches. Kind of neuropathic sort of stuff, as well. Just like pretty much anything that I could find, I’ve probably tried it. Some of the stuff, before I got sick, I would have thought, oh my God, this is ridiculous. But when you're so desperate, you will literally try anything you can.

Lauren: So true. 

Mimi: But nothing has really helped me. Because there's been so much trauma attached to going to these doctors’ appointments and dealing with certain doctors, I sort of feel like I don't even want to do it anymore. They're not helping me, no one's helping. I feel like I can see all these people, and sometimes I'm just, like, well, what is even the point?

Because no one's really doing anything that's drastically improving my way of life.

Lauren: I imagine of the illnesses that you're dealing with, the POTS is perhaps most easily managed. But with something like EDS, there isn't a standard of care yet that's available for patients. So how are doctors supposed to be able to administer care when there is no standard of care, when diagnosis hasn't been standardized yet. Which is what a number of organizations are trying to create, more of a standardization. Obviously, you've tried these holistic methods, and the trauma that is continually compounded when you're not seeing relief from these treatments … that's got to ultimately be worse than trying to grab the brass ring somewhere — and just missing continually. It's hard for anyone who hasn't lived with chronic illness to really understand that frustration.

Mimi: When you go to see doctors, and you are the most vulnerable, and they have the ability to say … what they say matters more than they could ever imagine. If they don't treat you right, or if they say stuff to you that is …

Lauren: Something a bit flippant, maybe,

Mimi: You’re completely at their will. If a doctor treats me with human care, just being kind and actually just trying to understand, then I'll leave that appointment and I’ll feel so much better about things. If a doctor doesn't do that, you just feel, like, I don't want to be here.  I just can't do this anymore. They have so much power. And I don’t think they really understand the power that they have. 

Lauren: Some do … as you say, the ones who really have compassion. They certainly are better serving their patients. But it doesn't make a difference when there isn't a standard of care for a disease like EDS.

Mimi: I know a few doctors just in terms of family, or friends, and they seem to not really get the effects of what some doctors do to their patients. I feel like there's this whole thing of … well, it's not all doctors. Yeah, it's not all doctors, but it's still a high number of doctors who are treating their patients like shit. I feel like it's actually a bit similar to the ‘not all men’ scenario, of pushing the blame.

Lauren: I think that's a very well-made point. Especially being a woman in a system that isn't working for you, you're already at a disadvantage. We're already living in worlds that aren't designed for our bodies, and then you have to deal with being dysfunctional in those worlds. As you say, that power dynamic, it's a reflection of what the #MeToo movement is. As well as so much of what chronic illness patients go through, and how we struggle to survive, and to explain what's going on — to people who just have absolutely no concept of it whatsoever.

Mimi: It’s so hard for us to explain anyway, because when you're dealing with so many symptoms that are affecting your processing of information, there just aren't the words.

Lauren:  I also wonder, do the words even exist to properly? 

Mimi: Yeah, that’s what I mean. There aren't the words in the English language. For me, when I went to doctors to start with, in my head at that point, I thought that doctors could cure everything. I've never been in a situation where a doctor couldn't really do anything.

And I feel like when they start to tell you at that point that it's in your head, or there's nothing really wrong with you, I think you then start to believe that as well.

Because you think that if they're saying this, then it must be true. And then you realize, actually, that it's not true. 

Lauren: That psychological journey, it's a familiar story, and all too familiar. And adds to the additional frustration. That struggle to be believed. That we don't have the language to express it. But even then there are so many people who just aren't receptive to that either.

Mimi: Yeah. The mental health journey that you go on when you’re unwell, it’s a whole kind of …

Lauren: It’s a whole separate diagnosis.

Mimi: Yeah. And also, it's so hard to be able to be taken seriously for both and not try and have them blamed on each other. Obviously, they're separate to a certain extent, because obviously, they impact each other. It’s not that they’re separate, but they need to be treated separately.

Lauren: Well, that's when the self-doubt begins, doesn't it, when you go like … is everything I'm feeling real? If I can't properly explain it, is it real? If a doctor doesn't believe me, is it real? Am I actually a crazy person? Do I need mental health treatment, because I'm losing my mind. But equally, you are losing your mind!

Mimi: I definitely lost my mind. After I got sick again … when I felt I had gotten my life back and then I was sick again … I really, really lost my mind. I was so suicidal, and was in psychiatric hospitals. I couldn't see myself living this way. I had a taste of what it was like, this life of being sick. And I was, just like, I can't go back. I can't do this again. I actually did find that that was something that I did actually get help with. But again, I saw a private psychiatrist for my mental health. And actually, I think that she did help me quite a lot. That's something that I am a lot better with now; my mental health has definitely improved.

Lauren: Has art also been an outlet for you in that sense?

Mimi: Actually, that’s a weird thing because I used to do art at school, and it was the thing I loved and I was sure I wanted to pursue it. And I went to do my art foundation before I went to uni; I wasn't planning on going to uni, I was going to an art school. And then after my foundation, I just felt like, do if I want to do this anymore? I don't feel like they understand what I want to do. I feel like they're pushing me out of my comfort zone too much. I really didn't like that whole feeling, Because I think if you're an artist at school, you're probably one of the best artists and you want to do art. And then you go to art school and you're like, oh my God!

Lauren: The pool is suddenly so much bigger!

Mimi: I have never been very self-confident. And so straightaway I was, like, oh I don't want to do this anymore. So I went to uni and did history of art instead. I just stopped physically doing art. And I'd always have such weird dreams when I was unwell. I don't know if it was actually to do with art. I think it was more about failing.

But I would have dreams that I was back at school again and I was failing my art A levels. It's so weird.

Yeah, I don’t know what that was.

Lauren: I still have dreams about walking on stage and not knowing my lines, if it makes you feel any better!

Mimi: Such weird school dreams … I don't know why.

Lauren: It’s all anxiety, isn't it.

Mimi: Yeah, definitely is. School was my happiest time as well. And I’d feel almost like everything's been so rocky. In my dreams, I’m back at school but there’s shit at school. Generally, there'll be something really awful happening in my safe space. 

Lauren: Isn’t that interesting though, because that's something that's also happened because you've gotten chronically ill. Because your life has changed so drastically, that this happy time is being tampered with in your dreams, too. 

Mimi: Yeah, and the nightmares that I've had since I've been sick as well … it's just all the time, every night, crying mostly, or waking up drenched in sweat. I used to think it was one of the medications I took, at one point. I thought that was a side-effect of that. But I don't take that medication. I haven't now for ages. I think it's just something that a lot of us get, these night terrors.

Lauren: Yeah, because the anxiety is palpable, all the time. And you're living with that anxiety at such a high level, every hour of the day … no wonder. It’s medical PTSD at that point. But it’s also understanding what trauma does to our body, and that it's going to be even more difficult for us to grasp wellness or any semblance of it, when mentally we’re fighting a battle every day.

Mimi: Yeah. I remember when I got diagnosed with PTSD, due to all this stuff I’d been through, medical wise.

And I remember just thinking, this actually makes so much sense.

But I think at the time, you don't feel like you're deserving of having PTSD. I think that's something that you feel has happened after something really tragic and dramatic. And you don’t want to associate your illness with that, even though it was.

Lauren: I haven't been in a car accident, I haven't had violence done to my body. But actually, you have, because you've been poked and probed by every doctor out there who's told you, “I can't help you." It is trauma. It's just not trauma as we're taught to understand it.

Mimi: Yeah, completely.

Lauren: So when did you turn back to art? Because obviously, it's very much the platform that you're using to communicate now. It seems like you've ended up channeling a lot of what you've been through into your art, but also supporting other people in the chronic illness community in doing so.

Mimi: It was about this time last year. I did draw a teeny bit when I was in that psychiatric hospital, but then I stopped as soon as I got out. I don't know, it was just something I did at the time. And then I don't know what sparked it this time last year. I don't know why I was suddenly, like, oh, actually, I'm going to start drawing again. I just did. I already had an account I'd made. But I’d posted like two images on it. One was just a picture of me. And then another one was, I can't remember, something else. And then I just didn't get back to it. It was a year ago, thinking, I'll do this — and then stopped.

Lauren: Yeah, that's pretty typical with social media anyway!

Mimi: I remember one time, right before I started … I remember being, like, I'm gonna have a look at some of the hashtags of chronic illness things. And then I remember just being absolutely, like, oh, my God, People were saying what I was feeling, but it didn't comfort me. It was making me feel like, oh, my God, there are people out here like me, and no one's doing anything. And oh, my God, it's too much. I’m going to shut this phone off. I can't look at this stuff.

Lauren: So it actually gave you more anxiety, rather than helping you find community.

Mimi: So much more.

Lauren: I think that's typical, too. It's interesting, because a lot of people talk about turning to social media to find community, but I don't think that works for everyone. And in doing that, you also have to be able to filter out the stuff that isn't helpful to you — which takes practice.

Mimi: Yeah. And so then when I started drawing on it, someone would like something or comment on something, then I would start following them.

And then the stuff I was seeing, the more that I actually then established friends on social media, the more that it was no longer this place that was actually quite scary.

Lauren: Yeah, and you found your community in that. But again, it took a minute, but it sounds like it was good that you sat in it a little bit and figured it out.

Mimi: I think that's quite important. Because if you go straight in to that, to just looking at that stuff all the time … now I'm pretty much looking at it the whole time, the whole community's experiences. But you have to sit with that for a while. It was stages of actually using the account. It was like, okay, there are people out there. Okay, I'm going to do a drawing, but I'm not really going to look at what anyone else has. I'm not actually expecting anyone to see. 

Lauren: Let’s just see what happens, kind of thing. 

Mimi: Yeah, exactly. Then I did a drawing of Lena Dunham. That's when actually I think got some followers, or people knew that I existed.

Lauren: And for those who don't know, Lena Dunham, she's had a full hysterectomy now. She was living with endometriosis, and has been very open about that as well. And so, you doing a drawing of her is very much looking to someone who set an example in pop culture, and responding as a fan, but also as someone who gets it, on a certain level.

Mimi: These celebrities I then started to draw were the only people that I'd ever seen with some of the illnesses. Maybe they weren't the same illness, but they have similar symptoms. I would see stuff that would be occasionally in magazines. But so occasionally, and I would just cling to it so much. I would be, like, oh my god, there's someone out there who exists like me. Now I obviously have friends online. But back then they were kind of the “friends” who were sharing similar experiences. They weren't my friends or anything, but it was just someone else who I could felt like I could relate to.

Lauren: And the celebrities who were open about it, too.

Mimi: And it’s so important that they are. Obviously it's up to them, but I'm so thankful that there are some celebrities who do speak about these things. Because I think the people who aren't ready to go on social media and maybe be part of this community, who aren't ready to …

Lauren: To embrace the community.

Mimi: Or the stuff that comes with being on social media. I think that it's so vital that these celebrities do speak out, because, oh my God, it helped me so much.

Lauren: There are also people who become celebrities because they're speaking out about this stuff. We were talking about Lara Parker just before we started the interview, because she's a great example of someone who has gained notoriety because she talks very openly about what she's going through as well.

Mimi: Yeah, definitely.

Lauren: Obviously, you found these celebrities who were helpful to you and your self-perception and understanding of the larger implications of your illness. But did you find that you also needed a personal advocate at any point to getting your diagnosis, going through this? Figuring out how to discover treatments and live appropriately? Is that something that you ever found for yourself? Or were you always your own advocate?

Mimi: I think my mum was, to start with. She would come to everything with me. And she would always say to me, “No, I won't stop till we find someone to help you,” sort of thing.

But then, after the first year, I think she was really expecting me to be better. I didn't get better. And then our relationship completely fell apart.

We're okay, now …

Lauren: That's very interesting. I think it's really important for people to understand that sometimes the expectations of others who are trying to help us … sometimes our bodies aren't going to catch up to what they're hoping, and that can really affect the relationship. And it's not any ill will on either side. It's just that we're still trying to figure it out, too.

Mimi: I was living at home and she just found me so hard to be around. Obviously I was hard to be around. In my eyes, my life was completely over. I was suffering so much. My mom, she's quite unemotional.

Lauren: Gee, she must be British! (laughs) 

Mimi: She’s so different to me, though. She really lacks having empathy. I think she just really gave up on me. And it was so hard. We’re fine now. We're really building a good relationship now. But for five years, we were not in a good place.

Lauren:  And that's a long time, five years, to be without that advocate. And to have to sort of find yourself again.

Mimi: Once your mom basically abandons you, the one person that you think will be there for you no matter what … you don't just get over that. It affected us. I mean, it still does affect me now; even just thinking about it does actually make me feel quite upset.

Lauren: Yeah. But it's also completely normal and natural that there will be limits to others’ understanding of our situation. But it can be really hard to be left behind.

Mimi: Yeah. I don't know, I'd always thought that no matter what, she would always be there.

Lauren: Yeah, we feel that way about our moms when we have a decent relationship to start with.

Mimi: And if you really needed that person, they'd be there. I think that was really difficult for me. Everything's fine now but I think since then, I've just kind of been my own advocate. My dad maybe a bit, as well my boyfriend maybe a bit too. If I was in a place where I felt like I couldn't voice anything about things …

Lauren: Do you also see the irony, as a woman, turning to men, like your dad or your boyfriend, for help in voicing what you need to voice?

Mimi: Yes, it’s really arrogant. The only times I really felt like I've been taken seriously are the times that I've gone with my dad. They're the times when I feel safe in a doctor's appointment, or like they're actually listening to me. 

Lauren: Isn’t that amazing? 

Mimi: ...

I’d recommend taking a cis man with you to any appointment if you want to be taken seriously.

The only way I've ever felt like I've been taken seriously.

Lauren: Yeah. It's fascinating to me, the biases that exist, just among us as individuals, but also, within the medical system, and between patients and doctors, that a cis white man is going to have the best luck. Not only because of the research that's behind the conditions that he might have, but also the way in which, culturally, we’re structured to believe men before we believe women.

Mimi: And I think there is always that “crazy woman” thing. They’re, like, oh, “the mad woman”. When you’re mad because you're just hormonal and just a woman, basically. They just think as soon as you start to show any of the signs of just being a bit hysterical. I mean, I'm hysterical …

Lauren: But you were hysterical for a reason. It's not like you were hysterical for no reason.

Mimi: Yeah, there's valid reasons why we are hysterical. I don't think that there's not any reason why a woman's being hysterical. But I think they just see that, and they’re, like, oh, God, no, we can't listen to what she's saying. She doesn't know what she's saying.

Lauren: And I suppose that’s where the voices of those celebrities that you were able to look to as well, who were saying, I'm not hysterical, this is something that's actually going on … they carry that much more weight when you're a patient struggling with not being believed … that there is validation, even among strangers, but ones who are also being taken seriously because of celebrity culture.

Mimi: I think they validate you so much that you think …

Lauren: … I’m okay. Yeah. I haven't lost it. So, I'm wondering, as you've come through the diagnoses, tried lots of holistic methods for treatment, you're still finding ways to manage day-to-day because there's no definitive treatment for anything that you're dealing with. What does a typical day look like for you at this point? And how are you balancing work and life as you're managing your symptoms day-to-day?

Mimi: I'd love to be, like, “Oh, you know, I get up and have fresh pressed juice, and go for a small walk.” That's just not how it is.

Lauren: It's just not realistic in a lot of cases.

Mimi: Yeah, I wake up and then straightaway I’m, like, coffee. I’m usually screaming “Coffee!” at my boyfriend like an ogre just needing coffee in the morning. I drink like a gallon of coffee before I can even start the day.

Lauren: Well, we're constantly told we shouldn't be drinking this or that, but obviously it's something that works for you and something that gives you joy. 

Mimi: Exactly. I don't even care.

I have given up so much for different diets and stuff, but it doesn't really make a difference.

It helps my head actually when I wake up; I get such bad migraines and headaches all the time. The coffee in the morning actually helps my headache. I need coffee for that first headache. 

Lauren: And I want everyone to understand as they're listening to this … you have coffee to get the first headache out of the way, it's not just to get your day started. There are layers that need to be peeled back here, you know.

Mimi: Honestly, my day is just so dull. It’s very the same. I'm just here the whole time on my sofa, Going to appointment occasionally. I haven't really been been going to that many appointments at the moment. I feel like I'm having a bit of a break, and I’m actually getting the confidence to go back into dealing with doctors.

Lauren: You’re gathering yourself.

Mimi: Yeah, I am. I completely am. I needed some time, I think. Because I haven't really noticed any difference when I'm not doing treatments and not trying to search for the next thing.

Lauren: And it’s a mental health thing too, to stand back and gain some perspective.

Mimi: Yeah. And then I'll do some drawing …

Lauren: And are you working full-time as an artist now?

Mimi: Well, it’s only been recent. When I think back, I wasn’t even really doing any drawing this time last year. Now I am doing a little bit of that work stuff. It's so weird. I still don't feel like I can call myself an illustrator, even though I actually have just done a really big paid job. I kind of feel like that job I've just done kind of makes me an illustrator. But I generally still don't see myself like that.

Lauren: We're already struggling with our identities in this world in terms of … who I am, what my name means, what my career is. But on top of that, you're also dealing with … am I a sickly person? Do I have this illness? Can I treat this pain today? What you have to struggle through to even gain self-validation, it’s more and more layers that you have to work through when you're living with chronic illness. 

Mimi: Completely.

I feel like being part of this community, though, has actually done everything for me.

I now don't feel so much guilt about not having a proper job, or living this way and living in permanent chronic pain. And all these other symptoms. That is enough of a job, that is the biggest job, and you don't get a break. You don't get paid. And it's pretty shit. So I just started doing actual work stuff. The first bit of money that I got from this job, I remember feeling, I never thought that I would ever make my money. I had worked when I was younger; I did bar jobs and catering jobs. But I never thought that I'd actually be able to make money.

Lauren: Because you've been bedridden for a long time.

Mimi: Yeah, I don't want to put too much value on that. Because that might be the only job I ever do. And it's completely acceptable not to do any jobs. You're doing the best that you can. But that feeling was such a nice feeling. I had come to terms with the fact that that probably would never happen for me.

Lauren: But in a way it's happened because you've created a community for yourself, and people are responding to your work. So chronic illness, while it's something that we struggle with in terms of self-identity, it's also something that can lead us to what we're supposed to be doing, in a sense. So, you mentioned earlier, as well, that trope of the hysterical woman, and not being believed — which you definitely cover in your work. People may know you for these portraits of someone's face, who's living with chronic illness, and it will say … believe (the name of person). I'm wondering if you have any particular recollections about moments when you were forced to validate for someone else what was going on with you, that you had to justify the fact that you were sick and someone just did couldn't grasp it or didn't understand it?

Mimi: I think I've had that a lot of friends. To me, it was awful. It happened when I was first unwell and I remember I couldn't go back to uni, and I had to watch all my friends going back to uni. And then I found out that people at uni were saying, like, “Oh, she's not really ill.” All this stuff. And I remember just finding that … Or a family were thinking, oh, is this actually like legit? Or my other friends …

Lauren: Attention seeking. 

Mimi: My life was at uni. Why would I just not want to be at uni? Why would I just want to be in bed the whole time, really upset and crying? No one wants that. That is not a choice. That's not something that I decided I wanted my life to be like. I just don't understand why people find it so hard to believe, because no-one wants to be sick. I mean, maybe a couple of people do …

Lauren: It’s like a couple of bad apples ruining the whole bunch.

Mimi: Exactly. And then there's been times with doctors. I remember quite recently, I saw a doctor. I can't remember what it was actually for. But I was telling him that I was really struggling, because normally my pain had been above my my hips. So for ages, it was just headaches and neck pain. It was awful pain, but it was just there. And then it gradually started spreading further down my body. But I was still really grateful that my legs were okay, and I felt that I could still walk quite easily. And then about a year-and-a-half ago, that started to change. I went to see a doctor, and I was trying to explain to him that my legs were so painful, I was really struggling to walk. And I hadn't had that before, and it was worrying me because we all know that when you start to get a symptom, you pretty much know it.

And the doctor was, like, “Oh, but you managed to walk in here.”

I was just, like, “I can walk, but it's causing me like a lot of pain! I literally just walked from the waiting room into your office, and that was it.”

Lauren: It's so presumptuous and so rude. And that's the kind of flippant comment that can really shatter people's worlds.

Mimi: I left that appointment and I was hysterically crying.

Lauren: And then you become the hysterical woman they think you are.

Mimi: I was crying in the appointment as well.

Lauren: I would have, too.

Mimi:  He was just triggering me so much. He was asking me so patronizingly … he said to me, “Is there anything in the world that makes you happy?” It was just so weird. And the thing that what was making it even more annoying was that I couldn’t actually think of one thing at that time that actually was making me happy. And asking me with those weird, pitying eyes.

Lauren: And for so many of us living with chronic illness, we don't want to be pitied. We just want to be understood. There's a very big difference isn't there.

Mimi: You don’t want pity, you don't want praise. You just want to be respected as a human, and your lived experience to be respected and your word to be respected. You want want anything else. You just want your experiences to be respected.

Lauren: Because you're still seeking validation yourself. And we need it from outside sources to understand the bigger perspective of what's happening to us. And the fact that so much of what's happening, in terms of prejudice in the system, is systemic. We’ve also talked about the fact that as a woman in a lot of these appointments, you might have been treated differently. And I'm wondering whether you could also see the circumstances being different for you, in your history, if you presented differently than you are. Perhaps if you'd been a woman of color, or if you'd been trans. If you weren't a white woman. Obviously, we know bring a cis white man with you to an appointment if you want to be taken seriously. But this is something that you really do talk about in your work. It's enough to create a portrait of someone to remind people to believe people's stories.

Mimi: I think it was @InvalidArt who recently put up that image up about how we all think that is just white rich women …

Lauren: You and I were both, like, oh, okay, everyone, we need to remind you that this is true!

Mimi: It’s so true. And I think about it all the time … like, am I doing enough to share other people's voices, amplifying other people's voices, and not just talking about my own experiences. Because really, they are quite common experiences, and they're nothing out-of-the-ordinary of what you hear about quite often. I only know my experiences, I just I know from what I've read … it is definitely harder if you are a Black woman, or if you are trans.

Lauren: And it also depends how you present, and how someone’s gonna look at you. If they think that you're a cis white man, then they're gonna believe you more anyway.

Mimi: I find it interesting as well, how different cultures go through different experiences with their family. Asian cultures, it’s very hard for their family.

Lauren: There's different perceptions of familial relationships and of our duty to one another.

Mimi: Exactly. 

Lauren: That's a very well-made point, I think, that we have to understand that it's not just within this Western developed world that these things are happening, that it’s everywhere. These issues, yes, are systemic, but also, they're systemic in totally different ways, depending on where you are, as well.

Mimi: There was this Indian woman I was talking to recently, and she was saying how she's kind of divorced her family almost. And now she doesn't have anyone who she can carry on her cultural traditions with. I think about that sort of stuff, too. And I think you kind of forget about that.

Lauren: And chronic illness has made that happen in her life.

Mimi: Yeah, exactly. Because she felt like she couldn't be around that anymore. She wasn't being taken seriously. Obviously, that was very, very difficult for her.

But I think you forget that, for certain people … it’s not easy for anyone to just leave their families after they didn't support them.

But I think it’s just a massive difference depending on where you're from, as well, and your identity. It's not as simple as, oh, well, don't talk to that person if they're not supporting you.

Lauren: Which is a privilege I think. Cis white people have more of that privilege of being able to be, like, well, I don't need to talk to that person.

Mimi: If I didn't talk to my family, obviously I'd be really upset because they're my family and everything. But there's no kind of way of life that I would feel like I wouldn't be able to share with anyone.

Lauren: Because you live in your own culture.

Mimi: Yeah, exactly.

Lauren: Do you see yourself as an advocate in that you're lifting up the voices of people who have been marginalized, even more so than you? I see the irony that I'm a cis white woman asking a cis white woman this question. I would make the argument that you are absolutely an advocate, and one who is reminding white women in particular of our implications in this discussion, and the fact that there are people who are dealing with even more layers of invisibility or lack of understanding. How do you see yourself in this discussion?

Mimi: I don't even want to say that I am, because I'm not even deserving of any kind of praise, doing something that I would see as basic.

Lauren: A kind of necessity. 

Mimi: Yeah, exactly. And I feel like, what's the point if we're just going to be lifting up some people who are sick, or some people's experience of being sick. That’s fucked up, that's just wrong. It needs to be everyone. But I do feel like maybe with I am giving people … not necessarily anyone in particular, but people who either don't have the privilege of having a big platform; and mine's not huge, but I have got a decent amount of people who probably would see or read someone's story. And I feel, for me anyway, there's a big difference between posting your own story, and someone being like, I think your story's important. Can I share it? 

Lauren: I know exactly. Because, like you, we also have created platforms for other people.

Mimi: Yeah, exactly. That's something that I really like being able to do, share someone's story on my page.

Because I feel like it's me being, like, your story matters.

Lauren: Providing validation that you didn't get from people.

Mimi: Completely that. And, we're gaslit and mistreated by everyone around us, really. No one is giving us the kind of respect and empathy that we rightfully deserve. And I feel like when someone’s, like, “You know, your story is important. And I want to draw you and I want to put time into … “

Lauren: You want to give them a spotlight. Because their story is important.

Mimi: And also, I feel like it’s the added thing of not just sharing their story. It’s actually taking quite a lot of time and my energy. And I feel like it shows that they are really important. I wish I could draw everyone obviously. I wish I could share everyone’s story.

Lauren: Well, you might get there eventually! But also in sharing others’ stories, you have created a community around yourself. Rather than going to the community on social media that didn't quite feel right to you, you’ve brought a community to yourself through the stories of others, and through creating this platform. I imagine that's probably helped you find validation personally, as well, in a lot of ways.

Mimi: Well, I feel like the person who actually got me more of my initial friends on Instagram was Claudia who runs @AbleZine; she suggested some people that I follow. I remember talking to her, and I was a bit like, “You know, I don’t know who to follow. Some things I find really intense, some stuff I don't necessarily agree with.” We all are individual, we're all individual people. We're not just all the same. And so she gave me a list of great people to follow. And that then started me connecting with people and forming proper friendships, and then finding friends. And yeah, I have friends, they're my friends, but then finding people that like they hadn't seen before. And that gave me the confidence to chat to people online.

Lauren: But isn't it interesting, too, that if someone like Claudia … if we become mentors, like she was to you … if anyone comes to us and says, “Who should we follow?”, it’s as much our duty to give a proper representation of what disability looks like, right? So if someone's coming to us and saying, “Who should I follow?”, it can't just be cis white women, it can't just be cis white men. It has to really cover the gamut of self-identity within disability as well.

Mimi: You’re not going to learn anything, either. They’re literally just basically saying they’re living the same life as you.

Lauren: Yeah, it's an echo chamber.

Mimi: Yeah, completely.

I feel like I've learned so much this year, just about disability justice in general. And racism.

That I never really knew. Maybe I didn't even really try. I felt like I was definitely living in a bit of a bubble before I got sick. And then when you actually do start dealing with things like sexism and discrimination, you then start to be, like, I didn't realize that this really existed. I had heard about it, but I didn't really know much about it. I wish it wasn't that way, though. I wish I had started earlier being an activist or started talking about issues or raising people's voices.

Lauren: But it's hard to do that. I think it's hard to start on that journey when you're still trying to figure out what you've got going on. You had to figure that out a little bit first. At what point do you step outside your experience into someone else's? I think it's once you figured out where your experience sits, and how to sort through your own experience, right? You can't pour from an empty cup. So you have to know what you're dealing with in order to then look at these other stories and gain a better perspective on others and your own. So we know that you live in the UK, that you have access to free health care — but that you've also gone to private doctors. What are the ways in which the healthcare system that you live within is working for patients? And in what ways is it falling short or requiring improvement? It's a big, big question, I know. It’s like, that's a whole separate interview!

Mimi: I don't really feel like it works for people with the sort of illnesses that I have, like at all, really. Obviously, we're so lucky that we have the NHS and I feel like it works if you're in a life-and-death situation. It's obviously a massive benefit. I just think for us in general, for people who have long-term issues, that are very underfunded and just generally not really heard about, I feel like it doesn't really work for us at all.

Lauren: How is it working in that it does provide health care to people … very basic health care or acute health care?

Mimi: I think acute healthcare, yeah.

Lauren: And have you ever experienced any other healthcare systems, or is it just the NHS that you've worked around?

Mimi: What do you mean by healthcare systems?

Lauren: Have you lived elsewhere, anywhere else other than the UK? 

Mimi: No, only in the UK. 

Lauren: So we're sort of coming to the end of everything. And I wrap up my interviews with a couple of Top Three lists. This is the fun bit. If the rest hasn't been fun?! So I'm wondering what your Top Three Tips are for someone who maybe thinks, oh, my health is a little funky. Or maybe they've been diagnosed with something nebulous, or have been diagnosed with something that doesn't feel right. Or diagnosed, and don't know how to go about treatment. What would you suggest for people who are living that Spoonie life so that they can manage their way through? Top Three.

Mimi: I think pushing for answers, even when you're told there aren't any, is important.

But then I also think that acceptance is massively important as well, and I think that is something that takes a really long time.

I think for a lot of people, it’s tough, definitely. For me, it's taken me about six years of accepting this is actually my life, and this is the situation. And that's very hard. And you're going to feel like a lot of things … you’re going to grieve, you're going to just generally be absolutely devastated. But when you find acceptance, you realize, actually, it’s not as bad as you thought it was. And I do have so much joy in my life, and there's so much happiness, and I'm not just miserable all the time. 

Lauren: So you can remind yourself when that doctor asks you next time, “Is there anything in your life that makes you happy?” 

Mimi: Yeah. I think I've recently just become a lot more …

Lauren: … involved in your joy, more grateful?

Mimi: Yeah, grateful. It is obviously very hard to be grateful when you're just not grateful for your life in general.

Lauren: And when it feels like your body has betrayed you. 

Mimi: And when everyone else is living these amazing lives.

Lauren: That's another way that social media doesn't help, is that other people are, like, “Look, I'm on a boat in Greece,” and it's like, f*ck off.

Mimi: Now I don't even look at my personal social media anymore. I literally hardly ever look at it. I'm on my other one. Now I'm going off topic!

Lauren: No, no, it's interesting!

Mimi: Well, I think social media is so vital for a lot of people but I think that it’s given a bad reputation for providing us with just not being like we’re doing enough.

Lauren: Not being realistic.

Mimi: Yeah. But then I now have friends that I can talk to during the day when other friends are at work. Or they are people who actually are understanding about what I'm actually dealing with or going through. But I still feel at the same time, I need breaks. I think when you see your real-life experience or similar lived by someone else, it's very difficult to separate your life from your illness journey. And obviously, I'm happy now I identify as disabled; I’m actually a proud sick person, like, yeah, I’m sick!

But I feel like at the same time, I still don't want to just only be talking about illness and disability, or only being my illness or my disability.

Lauren: Because the conversation is so much more than that. I think you really do address that in your work.

Mimi: Aw, thanks.

Lauren: Okay, so wait, we've done two tips. You said … push for answers. Acceptance. What's number three? Is it maybe … go to social media, and use it to your advantage?

Mimi: I don't know. Because I feel like that's just so up to the person. I wouldn’t force that on anyone, because it's actually quite intense. And definitely, at times, I would not have been ready for that. I think it's comforting in the way that it validates you, but it's also just a lot knowing that there's all these people being ignored. My other tip … my other tip … 

Lauren: Maybe, believe people? 

Mimi: I think it might be finding something that brings you joy, and not kind of letting anyone make you feel shit about that. Whether it's just watching reality TV, which was definitely mine for a while. I wanted to watch absolutely every bit of reality TV because it would just take me away. I could always watch people living their lives, and I felt like I was almost living it, too. I was part of this reality TV land it was like my world wasn't actually happening. And I wasn't actually living this way. 

Lauren: That was a proper escape.

Mimi: Yeah, escapism. Anything that helps you and don't feel bad about it. For a while I felt bad. Like, “What have you done today?” “Oh, I just watched 20 episodes of The OC, or something …”

But I don't even try and defend it anymore. It really makes me happy.

Like, whatever.

Lauren: That’s a great one. And being unapologetic, too, I suppose is on that list as well … about what makes you happy. What about Top Three things … I mean, this is sort of piggybacking off of that … Top Three things that give you unbridled joy, that you're completely unwilling to compromise on. This could be guilty pleasures or secret indulgences. But it could also be comfort activities. Like, watching TV. Anything that makes you super, super happy that you absolutely won't compromise on?

Mimi: Certain foods and drink. Like coffee and chocolate. Even though I've been told by people, and I have given things up at certain points. But even though I might be told by people, “Ooh, maybe you shouldn't eat that much chocolate … or like, blah, blah, I’m, like, just go away. I was having so much chocolate at one point, I'd have like a whole big bar a day. It'd be my time when I just felt good. And I don't really care.

Lauren: Chocolate seems to have that effect on people!

Mimi: That would be mine.

Lauren: Also, maybe your art and TV?

Mimi: Yeah. My art, maybe. But I think at the moment, I am trying to do more drawing again, because I didn't have that much energy, and it does really hurt my wrist because it's all that  hand work.

Lauren: Do you use supports as well when you're doing the drawings, like wrist supports?

Mimi: I have hand supports. But can't help leaning over when you’re drawing, and all of those things have such an effect. I didn't draw for myself at all. It wasn't like an enjoyable thing. It was just because I had to get this done. But now I'm just also drawing because actually I like drawing. And then this little baby …

Lauren: Oh, show us! Oh, hello! There is a very cute chihuahua on my screen right now! Have you been there the whole time? 

Mimi: He's so well behaved. This is my baby. 

Lauren: What’s his name? 

Mimi: Diddy.

Lauren: Diddy, I love that.

Mimi: He's very mellow. I try and take Diddy out occasionally to the park.

Lauren: Which gets you out, too. 

Mimi: Exactly. It gets me out. We have an outside bit there. So if I'm not feeling well, then I can just go out there. And my boyfriend will always walk him, give him a longish walk in the morning and in the evening. So he obviously gets walked. I’m not abusing him!

Lauren: You're not the first person to mention that having a pet when you're chronically ill can be really positive. I think there's nothing like a dog, especially first thing in the morning when you're feeling a bit shit. A dog who's like, “Best day ever!”

Mimi: Yeah. I remember … because I don't live in London or in England …

Lauren: You don't live in England?!

Mimi:  I live in England, but in Jersey, which is  a very small island and very close to England. A flight away or a boat away. And I had to leave him with my mom over in London in November, and I didn't get back to London again until January. In those two months, I was so anxious. I was so sad, especially when it starts to get dark because it gets dark earlier. I just remember feeling like, oh my God, the world's gonna implode and my brain was about to go to pieces. places. When Diddy’s here, I feel like nothing bad can really happen.

Like in my head. I can't get to a really bad place mentally almost, because I feel like he almost just brings me back from that place. 

Lauren: He's your touchstone. 

Mimi: He can bring me back from really bad low times.

Lauren: Oh, that's really lovely. Well, Diddy, thanks for joining us. And Mimi, thank you for joining us. Can you tell everyone where they can find you and your work?

Mimi: Yes. Um, my Instagram account is @CantGoOut_ImSick. That's basically where you can find me, really.

Lauren: That's awesome. And is there anything else that you want to share with people tuning into this episode? Unpack a little more white privilege, maybe?!

Mimi: I would actually say that. I would also say,  make sure that you are diversifying your feed. You can either message me and I'll tell you how to, or have a look at who I'm following. It’s not a massive thing, but you just just learn so much more. And you're actually getting out of your privileged bubble; you’re actually involving yourself in really important issues. And you can then find out how you can help these people.

Lauren: Well, Mimi, it’s been such a pleasure chatting with you. Thank you so much for being on the show. And we can't wait to continue your journey and continue following your art. 

Mimi: Oh, thank you. 

Lauren: My pleasure.

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