Episode 133: This Thing They Call Recovery’s Jenny McGibbon on The Nuanced Experience of Living with Disability

Episode 133: This Thing They Call Recovery’s Jenny McGibbon on The Nuanced Experience of Living with Disability

Overview

Jenny McGibbon is a disabled graphic designer from Scotland, predominantly living with ME/CFS. She was born with a birth defect known as gastroschisis, and as a result she also lives with short bowel syndrome, chronic internal bleeding, and iron deficiency anemia. At the age of 16, she found herself in and out of hospital almost weekly — something that would continue on for some years. She couldn't relate to her peers anymore, and felt alienated in the new medical space she suddenly found herself occupying. Often the youngest person in the waiting room (by several decades), it became abundantly clear that none of the marketing, pamphlets, posters, or websites she was directed to were aimed at her demographic — or acknowledging her unique experience. So she took to the Internet to share her story — This Thing They Call Recovery. With a blog read in over 90 different countries, translated into over 50 languages, and a social media following of over 25k, Jenny is trying to get the word out: chronic illness can look like anything, happen to anyone, and everyone deserves to feel supported. Now in her mid-20s, Jenny is determined to help make sure no young person feels like they're dealing with health issues alone, and is committed to challenging the public perceptions of disability, sparking complex conversations and uniting Spoonies and their loved ones together. As a graphic designer, she uses a mix of visuals and copy to translate how life with illness feels, particularly when one is young. As she says: “I think there needs to be much more information out there about health — and ill health — presented in a friendly and approachable manner. Chronic illness affects your life as much as your body, and I think it's time more people knew about it.”

Takeaway

Sponsors

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Transcript

Jenny McGibbon This Thing They Call Recovery disability ME/CFS Uninvisible Pod

Lauren: Okay, guys, thank you so much for joining us. I'm here today with someone we've been waiting to speak to for quite a while. It’s Jenny McGibbon of This Thing They Call Recovery. Jenny lives with ME/CFS. She's a graphic designer, an artist; you may be very familiar with her work at this point. And we're so excited to speak to her all the way from the UK. Jenny, thank you so much for joining us.

Jenny: Thank you so much for asking me. I'm really excited to have a conversation and raise some awareness. 

Lauren: Oh, it’s absolutely a pleasure for me. I love hearing from artists in this community, especially because I feel like you guys are sharing your stories in very personal ways. But not everyone necessarily knows the full backstory. So to be able to give you a platform to really share that is super exciting, and to learn more about you. I know everyone who's tuning into this episode is going to be excited as well. So thank you for being here. So, I wondered if we could start at the very beginning. I know this can be sort of traumatic in the retelling. So whatever you're comfortable sharing with us, I would love for you to be able to tell us when and how you first realized you were sick, and how you've tried to take control of your health since your diagnosis.

Jenny: So I've sort of been sick forever. I was born with a birth defect called gastroschisis, which is where the abdomen wall doesn't form properly. I basically had a hole in my abdomen and my intestines were on the outside, and it starts to die off. So a bit of a dramatic start!

Lauren: For real. 

Jenny: I had to have sections of both intestines removed. And then basically stuff was stuffed back in and I was sewn up. So that was sort of the start of everything, 

Lauren: You were basically being reconstructed like a soft doll! 

Jenny: Yeah, basically. My organs aren’t in the right place. I don't know where stuff is … things like my appendix, I don't have a clue where that is. 

Lauren: Wow. 

Jenny: Yeah, something to note. So that was sort of the beginning. And then, for the first few years of my life, I was in a hospital a lot … obviously I have no recollection of that. But from say about age of 2 to about 16, I lived fairly normally. I was fairly healthy. I had the odd complication here and there when I had hospital stays to do with my intestines and the troubles with them. But generally, it was fine.

And then basically, I got to 16 and that's where everything sort of turned upside down.

My health went a bit haywire, and I started getting a lot of problems with my intestines. It was one of those medical mystery type situations where I was passed from person to person and specialist to specialist — and no one had any idea really what what was wrong with me. I was confusing everybody. I was complicated. My notes are absolutely massive. It was a complex problem. I was really really unwell for years. I had what turned out to be chronic internal bleeding from my intestines, for years.

Lauren: For years! Well, that's pretty exceptional that you survived that, for a start. So we know you're a fighter! 

Jenny: Yeah. So I had iron deficiency anemia caused by that. We knew that and we were trying to manage it. But the doctors were saying it was like trying to fill a bucket with a hole in the bottom, because I was bleeding from somewhere and they just couldn't really work out where or why.

Lauren: Way to instill confidence in you in the medical system at that point. I’d be so scared! When you're telling a 16-year-old girl who’s just trying to live their life.

Jenny: Yeah, I know. It was a wild time. To be honest, I don't actually remember all that much of it. I'm sure my mom could tell you much more, because I was just so unwell. I just wasn't well enough to know what was going on. 

Lauren: Which was probably a blessing in disguise. 

Jenny: Yeah, I was gonna say, it's probably a good thing, looking back. I was in the hospital weekly, all the time while still at school. I mean, I wasn't really going to school; I was either in bed or at hospital. But you know, I was trying. I never got a name for what was happening to me, it was just complications from the surgeries at birth, supposedly. But it's sort of meld itself out. It seems like that particular problem may reappear, who knows. But for now, that’s stable. But after dealing with that for several years, when I was 19, I then just knew something else was wrong. I was having treatments. I was having iron infusions and things for the anemia. And generally, they helped a little bit. I felt my fatigue was a bit better, things like that. And then, this one time, I was 19 and I went on holiday with my family, and I had a big bleed while I was there. I had to go to hospital. And it was a whole saga. But after that, I just felt different. I just knew something was happening. And I said to my mom at the time, actually, “You know, it's weird, because my legs are hurting.” She was, like, “Your legs?” And I was, like, “Yeah, just all over my legs.” I mean, I'm 26 now and my legs still hurt. It's never gone away. Little did I know, back then, that this was going to be a continuous thing. I think my body just had had enough. Lots of people get ME from a viral onset; as far as I know, that's not how I got it. I think my body was just very overwhelmed with everything that was happening to it. And in hindsight, I was pushing it too far. But no one told me not to. I think because it had been a slow progress.

And I was confusing everyone, and I think passed from person to person. No medical professional actually told me to slow down or stop working or rest.

It may sound silly to someone that's never dealt with it. But I think when you get sick over a longer period of time, you almost forget how sick you actually are. You don't realize quite how far from normal you are now. 

Lauren: Well, everything is so relative, isn't it, when you’re in the thick of it. 

Jenny: I didn't know any different. And my family didn't know any different because no one was telling us to rest, or whatever. I just naively thought they'd fix it, whatever it was. I thought once they find out what's wrong, I'll be fine. But obviously, that's not how it goes a lot of the time. So yeah, I ended up with ME, I think, just because I pushed my body too far. I told the hematologist I was seeing at the time, “This isn't working anymore, there's something else wrong.” He basically told me to get over myself. And I had to just accept that this is my body and that it was different. And I was gonna deal with this for the rest of my life. And he told my mum, “Stop dragging her around hospitals.” As if we were doing it for fun, you know? 

Lauren: And as if she were enabling you in some way. 

Jenny: I know, bizarre. Thank goodness she did drag me. I wasn't capable of doing anything myself or of organizing anything. If she hadn't taken me to all those appointments, I wouldn't have gotten any answers. So thank goodness we didn't listen to him.

Lauren: But isn't that a common story, too. This is a narrative that we hear over and over, particularly from women, that there is at least one doctor along the way who tells you it's in your head … and to get over it and move on and keep calm and carry on. And then how are you supposed to know anything different?

Jenny: Yeah, I know. And I think when you're healthy, you sort of assume that people that are sick go to doctors, and the doctors listen and believe you, and they fix it and they treat you, and then you're better. Whereas in reality, that's not the case all the time. With my work, I speak to an awful lot of people with a varied range of conditions. It's not just this one. And I don't know anyone, I don't think, that's not had to really fight — either for a diagnosis, or to be believed, or for fair treatment, or whatever it might be. It's a real struggle we have to go through; I know I did, for years, trying to get answers, and it felt like no one was listening. I was a young girl, and I just think they thought I was being dramatic, or … 

Lauren: Yeah. Being hormonal, being emotional, all those things.

Jenny: Just, you know yourself and you know when something's not right, and I knew something wasn't right. And it turns out, it wasn’t, and there were additional problems. I just knew it.

I didn't know how I knew it. But I was just, like, “There's something else you have to find.”

And since then it’s my ME that impacts my life the most. Because there's no safe treatment options for it. There's no cure, there's not really anything. I've been very lucky. I have very understanding GPs. My local doctors are really, really good. But they can only do so much as medicine allows. And I feel like I'm sort of waiting for research and things to catch up. 

Lauren: You are.

Jenny: Yeah, I mean, they can't do all that much for me. They believe me, they want to help me, but in terms of treating what is actually wrong, they don't know. So I just find I manage it best myself. I just deal with it day-to-day and pace myself. And we go from there. It's been 10 years now I've been sick. Here I am, still sick! But I’m still here.

Lauren: Yeah, also true. It's so frustrating. Hearing the story, it makes me frustrated for you, and I'm not even living in your body. So I sympathize as much as I can with the position that you're in. Especially with something like ME/CFS, where so many doctors don't even want to acknowledge that it is a diagnosable condition, let alone be able to treat it. Where we don't know necessarily where it begins. And here you are, having the onset when you are, as for many of us, at our busiest and working really hard in school, and trying to achieve and growing and being in relationships with people that hormones are affecting. That time of life, it's often the onset for illness for so many people that I talk to you on the show. It’s either at the end of high school or into college/university; it's that 16 to 19 age range. So how long did it actually take you to get the ME/CFS diagnosis? Because we know this is one that many doctors won't even diagnose as it is.

Jenny: Yeah. So I actually was fairly lucky with that. It took probably under a year to get it. Because basically, I found ME online. And I just thought: This is it. This is what I have. To start with, I found fibromyalgia online. And I thought, well, this sort of fits, but it's not quite right. And then from that, that's where I found ME — and I had never heard of it before in my life. For many people, I think with ME, no one knows about it. Unless you've had it, or you're close to someone that does. Generally people don't know what it is. I don't blame anyone for that, because there isn't much information out there. And there's a lot of misconceptions. So yeah, I didn’t know about it until I found it online. There was a massive list of symptoms, and I ticked off every one, and I just was, like, this is what's wrong with me, this is the answer. And so we just kept going back. You have to demand sometimes to be seen or to be referred and not have ‘no’ as an answer. Keep pushing back. Sometimes, you might be worried you're going to be the awkward patient, or whatever. But that doesn't exist, you deserve help and care. And sometimes you have to push for it. And that's not rude. That’s not you being ungrateful for the help that you have had. It's just reality, just sometimes you've got to push quite hard. And it can feel quite unnatural, I think, particularly at a young age. I don't know … like, these are adults, I trusted them to help all the time. And it felt weird to push against that and say, “You know what, I think you're wrong. And I think I have the answer. And I think I found it.”

Lauren: What a learning curve as a teenager. 

Jenny: I know. You grow up fast.

Lauren: Well, you're facing your own mortality in many ways. And these challenges to your health at such a young age, it does make you grow up faster … like, there's just no other way around it, is there. It's like immediately you're in dialogue with adults; there's nothing else you can do but rise to the occasion.

Jenny: Exactly. And you're dealing with such serious problems, and so quickly as well. You're just sort of thrown into it. And you think … right, well, here we go. You don't have an option. People quite often say, “Oh, I don't know how you do it.” But you just do. You have to. It's not a choice that I've made. I just don't have the option to do anything else. You just have to push. So that's what I did. And that's why it went through quite quickly, to an ME specialist. Because if I hadn't found that online, who knows?

I maybe still wouldn't have the diagnosis to this day. It’s only because I found it online.

Quite often you're told, don't Google things because you'll scare yourself. Which is true. But you have to take everything with a pinch of salt. And just because something's neat and a match, it might not be that. But it may be. And I would rather investigate it and find out ,and I would rather bring it to someone's attention. I think it's a shame that quite often people are sort of shamed for that. You know, “You found it online. What are you doing searching through all that?” But if you're not getting answers anywhere else, you want to find them somewhere. So you do just end up searching through all these different conditions and talking to different people. And then sometimes something just clicks, and you think, “I found the answer before the doctors have.” I was going in and out of hospital for years. And I figured it out myself. I think that’s quite often what happens — because you know yourself, and you know what you're dealing with. And some things you do just have to take control in that sort of way and stand up for yourself a bit, which is difficult. I'm not trying to say it's easy at all. There’s obviously different factors that come into play. I have a lot of privileges. I'm slim, and I'm white, and cisgender, and all these sorts of things, which definitely come into it. So I'm not trying to say that it's that easy … “Just tell them that you know the answer, and they'll listen to you!” I don't think that's the case either. But it's a shame that just so many of us have to push so much. And it's scary to think how many people are living with conditions that they don't know about, and they still don't have their diagnosis, because they're not being listened to. And it just so happens that they've not found it themselves yet, through no fault of their own.

Lauren: Right. I'm also kind of amazed, you mentioned that you were referred to an ME specialist. That's not something we hear about here in the US. There are integrative doctors who might work with patients who are dealing with chronic fatigue, or any related symptoms. But the fact that you have that in the UK, whether or not it's working, is kind of miraculous.

Jenny: I know. It's definitely not common. There is one in Scotland. So it was luck, I think. It's definitely not common by any means. And so many people have so many problems. Yes, I’ve seen an ME specialist, and he gave me my diagnosis. But after that, there is nothing here. There is no support system, you're just left to your own devices to figure it out by yourself. I was just so sure, for years … once I know what it is, I thought that was the difficult part. I thought that was going to be the problem. I've got a name for it, which I'm glad for because it's helped me meet so many people in a similar circumstance. So it has brought me things. But it has a limit, and it's not entirely helpful. And still there's not anything anyone is particularly doing for me, other than what I'm doing for myself.

Lauren: Well, what does that look like? What does your day-to-day management look like? And what kind of symptoms specifically? I know you mentioned you have pain in your legs; obviously, there's fatigue-related. What does that day-to-day look like for you?

Jenny: Pain and fatigue are my two main symptoms. Particularly, fatigue is what impacts me the most. Because I find generally, up until a certain level obviously, I can push through pain, you can sort of put that to the back of your mind. Sometimes, obviously, not always. I'm generalizing here.

But fatigue, I find there's no pushing through that. I just can’t. My body just goes into shutdown mode.

And it's quite scary sometimes, to be honest. If I push myself too hard … and by that I mean I was maybe on my laptop for too long. I don't mean I went for a run or something. My brain just feels like it's shutting down, and the body just feels like it's shutting down, and you just know … okay, I’ve pushed this. So really how I manage it is just by pacing myself and you learn … I mean, it's been years that I've been living with it, so I know, roughly, where my limits are. And I really, really try not to push them. If I can. Obviously sometimes life happens, and something will come up and you have to, but generally day to day, I really try to not, and I really try to live within those limits. As frustrating as it is; it's not easy by any means. But I’ve found that’s what was most helpful for me. Rest, trying to get real, true rest, physical rest, emotional race, mental rest, really trying to be kind to myself and go slow. And none of that comes naturally to me. I am your type A personality. 

Lauren: It’s always us! We’re the canaries in the coal mine. I don't know why, but it's always us. 

Jenny: I know, it's a common theme. So, you know, none of that's easy. And by no means have I mastered it. I'm not trying to say that I get this right all the time. There's definitely days where I push it accidentally, or on purpose just because I want to try something. Sometimes you don't know until you try it, and then you learn, and that's when you know where your limits are. So it can be a bit messy at times. There's no rulebook; there's nothing to go off of because everyone's so individual. So until you try it for yourself, or until you just you figure it out, I suppose. But that's sort of my day-to-day. I just really try not to push it. I find as long as I stay in the house, it's manageable. 

Lauren: So lockdown has been familiar to you? 

Jenny: Oh, yes, I'm very used to not going out. I'm used to not seeing friends, I'm used to working from home when I can. None of that is new. I really didn't notice much of a difference when lockdowns and things happened. My day-to-day life really wasn't very different. Which I think for a lot of us, it made us realize how different our life actually is to a lot of other people’s, because suddenly people were really struggling after three days in the house. I just find I have to be slow and considered with things, and not push myself. And I think sometimes things like comfort zones get a bad reputation. You're told to push yourself outside your comfort zone, and take a leap and do something, make yourself uncomfortable. That's how good stuff happens. But actually, my comfort zone helps me and it helps me to do things. And if I want to stay within it, or if that's what is necessary for me, then that's what I'm going to do. And, you know, if that's what works for you, then that's what works. 

Lauren: I love that you say that. Comfort Zones R Us! 

Jenny: Yes! There’s nothing wrong with the comfort zone sometimes, I feel like. Sometimes it’s frustrating. And sometimes I really, truly hate failing to stay in it. But, you know, it's not necessarily wrong, and everyone's different.

And, obviously, everyone's comfort zone will be different, and it will look different, and it might look different day to day.

My days vary so much. That's something that I struggle with the most. You don't know what your day is going to be like until you wake up. I don't know what I'm going to feel like. I can't plan. But I also can't be spontaneous. So I don't really know what to do with that a lot of the time. It’s somewhere in between. You sort of make loose plans, so you can plan and rest and things like that. But maybe it gets to the day, and I still can't do it.

Lauren: You sound like you're so empowered in these lifestyle adjustments that you've had to make since you got sick. You mentioned that you have a certain amount of privilege in the way that you present in the world. That’s one thing. But it also sounds like you have a support system that's enabling you to make these decisions that are best for you. I'm curious to know how that's presented in your life. It sounds like your mom was an advocate for you early on. And how your diagnosis has impacted those relationships, as well, as you've navigated that emotional world with the people around you.

Jenny: My mom is definitely my biggest advocate. I honestly don't know what I would have done if she hadn't pushed everything and kept all the notes and pushed me and took me to appointments and helped me with forms and all these sorts of things. I'm so lucky to have that. Because not everyone does have an advocate like that. And truly, I don't know what I would have done. But it does impact things. Because obviously, I've I've been sick my whole life. And she's been dealing with that. She sees me as sick, because I am. And I think it’s difficult when you grow up sick, and you go from a sick child to a sick adult. But your life doesn't really reflect the fact that you're now an adult; my life is the same. I still live at home, and not much has changed in that regard. So it's a difficult thing for all of us to navigate, I think, the fact that I am an adult now, even though I don't necessarily live like one. And it's weird, the boundaries are different. It's complex, it's complicated. I think illness does impact all your relationships, whether it's your family dynamic, or your friendships or your relationships, or whatever it might be. And even if all the impacts aren't negative … I'm not trying to say they are, there's definitely some positive impacts, too. But it does change things. And your relationships are different, or they can be, sometimes. Not always. So I think that's something we've sort of had to navigate together — where are the boundaries now. Because I'm older, I'm an adult. I maybe don't necessarily need as much of her help with things. But then sometimes I do need more help than maybe the average 26-year-old. I think it's just about communicating. And as things change, you go with it, and you try to be as open about that as possible. It's difficult. I've been really lucky, I've got a few really good friends that have stuck with me the whole way. I've known them my whole life, and they are very understanding. And my boyfriend's very understanding. He just gets it. I don't know how he does it, but he's just brilliant. And so I've been very lucky in the close people that I have. Obviously, you lose people along the way. Because your life's going in a totally different direction. I've had negative experiences as well. But generally, I have a few key people that have stuck by me, and they're still there. They've seen it all. And I'm glad that they're still here.

Lauren: Obviously you've been through a grieving process with some of those relationships, with your relationship to yourself. And you're using language like the word ‘boundaries’ … that’s the language of someone who's had mental health support. I'm curious about what that's looked like for you as well, because often mental health support isn't offered alongside the physical. Has that played a role in your journey as well?

Jenny: Yeah, for sure. Not at the moment. My mental health is stable at the moment; it's not something that I struggle with. But I have in the past. For a few years, I suffered from depression. I've suffered from anxiety before. It's strange, I feel like you sort of almost go through periods of time, and in chunks. There’s different things I've dealt with, for a period of maybe a few years, and then that maybe turns into something else. So, for me, I'm stable at the moment. And I'm very lucky in that regard. Depression isn't something that's on my radar. It's not something I have to keep in check. I don't know why, I don't know why things got better. I don't know. I tried different medications, they didn't really work. I tried different therapies and things. They didn't really do anything. And I don't know, somewhere along the way, things got better. I don't know how or why. But they did. I have dealt with that in the past, but it's not something that I deal with now. In the future, who knows. But I think you get into a bit of a rhythm with chronic illness sometimes. And I think I've got to a place now where I just know what I need.

Because of the support systems I have in place, because I've been very fortunate in a lot of ways, I feel able to see … these are my boundaries, and this is my limit. And I am not going to push that.

I can’t, it's dangerous for me to. So as much as I can afford to, I try not to. And so far, it's working. So yeah, I keep trying. And we'll see. I mean, obviously, there's difficult periods, and sometimes it's a lot harder mentally than others. You mentioned a grief process. I think that's not linear. Sometimes, I feel like I've sort of accepted my chronic illness and the fact that I will be living with illness to some degree, forever. But it's not like you get to that place, and then that's just you. And that's just it. And that from then on, you're just accepting of it. I mean, that's not what happens. I acknowledge, rather than accept, I feel like, because I don't feel fully accepting of what I have to deal with. I don't like it. I'm not grateful for it. But it's brought me things, and it's made me the person I am. I’m a very realistic person. That's what helps me personally. It’s not all positives, but it's not all negatives, either. There's a mix, and I try to be really honest about both sides of that. That’s what I do online. And I think that's what resonates with my work, because it's really honest. I'll share if I'm going through a rougher time, and I'm saying, “This is really difficult. I'm angry at the moment. I'm sad, I'm frustrated. I miss things. I miss people. I'll say that because it’s true. I think so often, people are told that you can share positives, but then it's awkward to share the negatives, and you should keep them to yourself. When actually, I'm just being honest. I don't necessarily view it as being negative. It just so happens that I'm dealing with something that’s difficult. And just like anything else, I'm not necessarily sharing for someone to fix it. I'm just sharing. And I think that's where miscommunication happens sometimes, particularly between sick people and healthy people. People feel the need to fix things, or they don't know what to say; if I share something negative, maybe they feel the need to counteract that with something positive. Whereas actually, I'm not asking for that at all. I'm just sharing, just like anyone else would share … maybe when you come home from work and say that you've had a bad day. You don't expect anyone to fix that. You just wanted to say that you had a bad day. And that's all. I'm just doing the same. But because it's chronic, and it's long-term … I get it. It's awkward … we don't know how to talk about these things because people genuinely don't. And it's like the cycle, isn't it, of … it's uncomfortable to talk about, so we don’t … but then it's never going to get more comfortable. In our personal circles. But then obviously, in the wider society as well, I think there needs to be much more nuanced conversation about what sickness is like, particularly when you're living with it long-term. I would rather be able to share the scope of that experience. Because it varies so much from person to person, or from day to day. And it's such a mix that I think it's a shame for people not to be able to share that. There's definite barriers in place to stop from doing that. I just wish they weren't there.

Lauren: Yeah, you're absolutely right. That's so well observed. This need to normalize these conversations, to just let it be sometimes. Because, all any of us want is just to be heard —whether that's good or bad. No judgment on it, we just want to be able to express ourselves.

Jenny: I think just sharing sometimes. You're not expecting anything, really, to come from the conversation. And I think that's such a great way for people to show support to someone. It doesn’t have to be illness, it might be something like grief, or stress.

If someone's going through something, I think, really, people just want the space to be able to share that.

And to know that someone's there and will listen, and you don't necessarily have to do anything about it. Just being able to share, that's enough. The other day I was working on different things. I was gearing up to start this new job, actually. The last few weeks, I've been able to read a little bit more before bed, and I was really enjoying it. I was saying to my boyfriend, Ryan, that once I start this new job, I probably won't be able to read before bed anymore. And instead of saying, “Oh, don't be silly,” … or, “Yes, you will,” … or, “Oh, we'll find a way, you'll figure it out,” … he just said, “Yeah, probably.” And that was so helpful to me. That was all I needed. I just wanted to share … oh, it's a shame that probably I won't be able to read as much. And he just knew that that's truth. It's a negative, yes. And I view it as a negative as well; I’ll miss it. But it's not going to drastically change just because we want it to, and it was helpful for me to just share that. And he just agreed. 

Lauren: He gave you validation. 

Jenny: Yeah, it's simple on one hand, but also so complicated. Because we're not taught, really, to communicate. We have such an instinctive need to fix things. That's why people scramble for … “Oh, my neighbor's aunty’s friend had that condition.” That's where that comes from. We're scrambling for this need to relate, and they don't know what to say. They just need to fill that void with something. Whereas actually, you can just agree with someone that what they're going through is difficult. And there you go, job's done!

Lauren: That’s all any of us needs, actually, whether it's in relation to sickness or anything else. I'm interested because this is a discussion about being able to acknowledge what isn't visible, right. And that's a great example of your boyfriend being like … yeah … and just accepting what he maybe can't see, but understands. I wonder about situations in which you've been confronted and forced to justify the existence of your diagnosis to people who just didn't get it because they couldn't see it. Do you find that the invisibility factor here is an additional hurdle that you have to jump through, in order to be seen by people for everything and every one that you are?

Jenny: Yeah, I think it’s definitely a barrier there. And I think is difficult for people to understand. Like I said, I've been quite lucky in my personal group of people, like friends; generally, they're pretty good. But I think in terms of having to justify my illnesses, it's more systems, I feel, I’ve had to justify to, instead of individuals in my life. Things like the healthcare system, trying to justify that I might look fine to you. But I am telling you there is something wrong and I feel a certain way, and there's a problem somewhere. Just because you can't see it doesn't mean it's not there. And just because we've not found it yet, doesn't mean it's not there. I think that was a big thing for me. And then the other major one is when I was applying through the benefits process here; that was a major issue for me. I had massive, massive problems. I mean, it's not easy even for people with very visible disabilities. It's just a very flawed system. But I really had to justify myself and fight so hard. Again, my mum helped me so much; she came to the sessions with me and she filled out all my forms. But I guess it was the first time where I had written down in black-and-white … I sat down and thought about all the things that I cannot do for myself day-to-day. That was very confronting and a difficult process. It’s not easy to send all that information off to someone. And then I'd go for an assessment. And I just knew straight off the bat that, I am not being believed here, because I look fine. If I go out of the house, I can pass perfectly easily as a perfectly healthy person. Which has definite privileges, because if I want to pass under the radar in a certain situation, I can. And that is a definite privilege. But it also has issues attached to it as well. You have to push really hard. Symptoms like fatigue, for example. I think you can tell when I'm tired; I think I look tired. And people close to me, they know, they’ll catch on. But if someone doesn't know you, they're not going to pick up on that sort of thing. I had to really, really push. I wasn't believed, and my words were twisted. It was a really demeaning, demoralizing, awful, awful process. And they ended up not giving me anything. And then we had to fight for that, and then justify everything again. They gave me a very, very small amount. And then they took that away. And I just didn’t have it in me anymore. I couldn’t do anything else with it. And I think that sort of experience sticks with you. And it has such an impact. It definitely impacts how I feel as a disabled person.

Because for years, I didn't know I could actually call myself disabled.

I didn't know I could use resources and things available for disabled people that would help me. I didn't feel like I qualified. Because I was told I wasn’t.

Lauren: And also, the picture that we see is always a wheelchair, isn't it. It’s, like, are you disabled if you don't necessarily require a mobility aid? We question that.

Jenny: We need more awareness around what disability can mean and what it can look like. Because that was such a turning point for me when I realized … hang on a minute …  I am disabled. Obviously, not everyone is gonna identify with that word, But I do and I don't see anything wrong with it. I don't think it's a bad word. It's just what I am. And now that I know that, I felt able to push more for my needs to be met. Because there's such a gray area when I didn't feel like I could push and I didn't know what the kind of legislations or whatever were like, and that I had access. I didn't know I could have certain provisions in place. Because I didn't know anything about disability, to be honest. I mean, I was a kid before I got sick. If I didn't have personal experience of it, how would I really know. But that's the thing. We need more awareness so that people know that disability can look like anything, and it can look like anyone. That would make such a massive difference to people in their everyday life if they were met with that sort of view that people just believed you. That, “Okay, you say you need this? Cool, I'll try my best to provide you with that.” It'd be so much easier. But it's there. You've just got to fight for everything. And it's exhausting. And I think when you're sick anyway, more often than not, you can’t do anything about it.  They make it so difficult, everywhere. That was a big turning point for me. Only a few years ago, I used a disabled toilet for the first time in a restaurant. I was, I think, 24; I was with my mom. I asked her if she thought it'd be okay if I used a disabled toilet. And she was, like, “Well, Jenny, if you need it, if it's gonna help you.” Because my problem is, I could physically get down the stairs. But I would really struggle to get myself back up. So depending on the energy I spent that day, or whatever. So, you know, things do stick with you. Even though I know better, and I know logically that I am deserving of that, and that would help me and it's perfectly fine for me to use that, it sticks with you that … oh, am I allowed? Like you said, I don't look like the little symbol, and I was so anxious and worried that everyone at every table was going to look at me funny when I walked in. Or I was really worried about walking back out and having to walk back to my table. I was, like, oh, my goodness, are people are going to call me out? Because that does happen to so many people. Luckily, it didn't happen to me. And I've not really left the house much since, so I've not had a need to do it again. But I think I would, I would probably use it again — because I have a right to. It is such a turning point to believe that in yourself, I think, even if logically you know better. Because other opinions and things, they do stick with you, and you almost have to forcefully, consciously push the idea to the side and say, no, I need this. This is going to help me so I’m going to use it, and if someone thinks differently, then that's their problem. But I know better. It's not that easy in that moment when you're worried people are going to call you out!

Lauren: Of course not. Because we hear horror stories like that all the time, people being judged.

Jenny: It's common.

Lauren: I wonder as well, because you mentioned earlier that you recognize your own privilege … that you're white and you're slim, and you're cisgender … going into, be it a disabled toilet or the health care system … what about people who present differently? Do you think that your circumstances of being diagnosed, finding the empowerment to stand up for yourself and what you needed … do you think that narrative might have been different if perhaps you presented differently to other people? Maybe if you were a person of color, if you were maybe not cisgender? How do you think that would affect that story for you?

Jenny: I think, most likely, it would have had an impact. Obviously, I can only speak from my personal experience. But I know for a fact that I would have struggled in a hospital setting, in particular where I had to push. I wasn't believed because I was young, I was a young woman. And my mum wasn't believed because she was a woman, and she was sort of labeled as a hysterical mother.

And I know, for a fact, we would have been spoken to very differently if it was my dad sitting there, and not my mum.

Straight off the bat, that would have been different. But it also could very well, probably would have been, different if I wasn't white, or if I wasn't slim. I hear so many stories of people because I talk to so many different people with illness, and our experiences vary so much based on perceptions that people have, based on maybe your size, or your race or your gender, or your sexuality, or whatever it might be. There's so much bias in things like health care. And I think quite often when people say that, and they try to have this conversation, you're sort of met with such disdain — as if you're being really unappreciative, or you think everyone that works within healthcare is awful, which obviously is not the case. But these systems, they're not new; healthcare didn't just appear one day, it's built off of all these old systems that are very much built on oppression and prejudice. That doesn't magically change through time. It doesn't logically go away. And if we're not going to talk about it, and if we're not going to confront the fact that that it is still very much happening, then how is it ever going to be any different? I have some great experiences in healthcare, and I have some friends that work in healthcare, and they are brilliant, and they are great at their job. I've met some amazing people that work in healthcare. So I know that it's not everyone. But that doesn't mean there's not a problem. And it doesn't mean that that problem is not a very serious one, and it is costing people their lives. I just think if we're not going to admit that that's there, then change is not going to happen, and people need it to. Much more than me; people need it to happen for lots of different reasons. And if you are criticizing our system, that's viewed as being negative. But actually, you criticize something because you believe that it can be better, and you hope that it can be better. And that is a positive. You see a difference, a possibility that things could be different and you're pushing for that change. I don't think that's a negative thing at all. Some people might think it's complaining, but it's not. It’s just being honest about problems and bias that exists. It's not trying to say that people that work in healthcare, everyone's bad. I'm not trying to blanket statement everything. But it's like any system. It’s the same as the education system or the criminal justice system, or whatever it may be. They're all built off previous systems and they all include bias. And it’s not going to go away until we recognize the fact that that is absolutely there. And it's not up for debate.

Lauren: I think that's so well said. And I wonder as well, these systems that create racial inequality, gender inequality, size inequality. So many different biases that exist in the system. Would you say that they are, in the healthcare system at least, their own public health crisis?

Jenny: Yeah, for sure. It has such a devastating impact on people. And on so many people. It’s such a widespread issue. This isn't something that just exists in little pockets; it's throughout the whole system and around the world. We're on different continents, and I'm sure we've experienced similar things, or we know people that have experienced similar things — even though our healthcare systems are completely separate. It's an issue that's so widespread that it’s definitely a crisis.

Lauren: And what about your healthcare system, as well? You're in Scotland, you're on the NHS. In what ways is that system working for patients? Because we're talking about ways in which it's falling short, and could be improved, because we believe in it being better — I love that you point that out. But are there ways in which the system is working, or isn't working, that we haven't talked about yet?

Jenny: I mean, I'm very lucky here for having the National Health Service, because I can go to a hospital, and it doesn't cost me anything. At point of contact, I don't pay anything for it. It's not perfect. And there are, like you said, a lot of things that could change. But I recognize that what I have is a luxury. To many people, it falls short a lot of the time.

But the fact that it's there in the first place, is something that I'm grateful for, and it saved my life multiple times.

And it saved multiple people I know, multiple times. I'm glad that it's there. I just would like to build on it. And for it to be more funded, and more heavily staffed and things like that. It has issues, but I'm definitely lucky that it’s there; I don't take it for granted at all. It's a service that we're lucky to have. 

Lauren: You've also been taught that healthcare is a human right. We don’t get that here in the US!

Jenny: I know. It's definitely a plus. It's just so different around the world. You hear stories, and I just can't believe what’s it like. So I'm very, very lucky. And I think a lot of people, particularly if you don’t really have to use it very much, don't really recognize actually how powerful it can be. I've had to use it a lot throughout my life. And I don't even want to think about how much all those tests and all those procedures would have cost. I just can't even imagine the number. The fact that I could do that, and I had access to that, without a doubt, saved my life. I owe my life to it.

Lauren: Aside from the acknowledgement that healthcare is a human right, and you are taught that in your culture, it's also that even if you don't depend on the healthcare system now, it's there for you when you do need it. There’s an acknowledgement that everyone's going to rely on it at some point, too, in all of that, isn't there.

Jenny: Yeah, I think a lot of people maybe take it as a bit of a given because if you didn't know differently, if you've grown up with it, you just know that it's there — and you don't really think too much of it. It's not until you maybe need it at short notice, an emergency, that you realize … oh, my goodness, it’s there for when we need it. I think healthy people perhaps assume they can rely on that. Which we know that you can. Things can change, and things happen and life happens. At some point, everyone's going to need healthcare in some way or another. Everyone needs it. So, yeah, I totally agree that we're very lucky to have what we have, because it serves so many different people.

Lauren: I suppose the hope is that it would help reduce bias because at least it's free at the point of access, and there is access for everyone. But of course, we know that there are deeper biases in places we've discussed. I want to pivot now and talk about your work, because that's really the reason we're here today! You have an amazing following online. I found you on Instagram. You really are an advocate for the chronically ill and disabled community, and show that through your work. So talk to us about what made you start speaking up in such a public way, and creating work that serves the Spoonie community?

Jenny: Well, it was actually entirely by accident. 

Lauren: A happy accident!

Jenny: Yes, I'm very glad that I did it. And I'm very glad that it's going the way it's going. But I didn't mean it to, at all. So, This Thing They Call Recovery started as a blog. It was a personal blog, and I didn't intend anyone to read it. It was meant to be a hobby, basically. I was taking time out of uni for my health. And I was bored. Because as I got a little bit better, suddenly I was coherent enough to be aware of the fact that I couldn't do anything — and suddenly felt boredom. When I was at my worst, I wasn’t bored because I was too sick to do anything. I was bored, I was lonely, and I didn't have anything to do. My previous hobbies were all very active. I ran and I swam and things like that, and suddenly couldn't do any of that. And then I said, I don't know what to do with myself. I was studying fashion branding at uni.

And my boyfriend said, “Why don't you start a blog?”

This is back when fashion blogs were all the rage. And I was, like, “Well, I can't have a fashion blog because I've been in these pajamas for the last week since I last had a shower!”

Lauren: (laughs) Well, were they cute pajamas?

Jenny: No, they were not! (laughs)  They were like a 10-year-old baggy T-shirt!

Lauren: I am in the pajama club like that with you!

Jenny: I said, “I don’t want to write about that!” And he said, “Well, why don't you write about being sick and your experience of that?” The only time I'd ever done that online was for Awareness Day; that was the extent of it. I'd write about it once a year, I'd make a Facebook post or something. And I thought, you know what, maybe I do have more to say on that. And so I started having a lot more to say. And I'm still doing it! But yeah, it just started with something for me to do. On the days where I felt like I could do something, I'd write a paragraph here or there. And I thought, if anything, it will be a record of maybe things that are a little bit better, or times where I'm getting worse again. All the blog posts are dated. So I thought, if anything, I can go to the doctor, and I'll have a record and it can help me sort of figure out what was going on. So that was it, that was all that was meant to be. My mom read it, and I was fine with that! At this point, I still wanted to work in the fashion industry. That was my plan. And I went back to uni, and I finished that. And then I went to college for graphic design, still intending to work in fashion. Everything I was making at college, I geared towards a portfolio in that sort of space. So that was what I was doing. But then on the side, I was learning so much about chronic illness and disability. And this is when I was learning that I was disabled, actually. And I could call myself that. And that was fine. Ans I just was so immersed in the community, and I was finding friends online. And I just thought … this is what I care about. This is what I'm passionate about. This is what makes me happy in a way. It’s like a negative thing that happened to me. But meeting these people and talking to people and learning about this stuff was important to me. So I completely changed my mind. And then I thought, well, what am I going to do now, because I don't have anything remotely related to this industry whatsoever. I hadn't really been doing anything with the blog, because I wasn't well enough. And when I was studying, that was taking up all my energy. So I hadn't really done much with it. But I thought I would set up social media accounts for the blog, and I would use it as a digital sketchbook sort of thing, just to practice, just to give me something that I could put in a portfolio when I finished college. As anything, it didn't matter what it was, I just needed something.

Because I didn't have anything and I'm starting to freak out a little bit.

That's what it was for. I just wanted to practice and I wanted to experiment with my style and different things like that. And then it just sort of took off from there. Really genuinely, that was all it was meant to be. I didn't expect it to be relatable to anyone else. But it turns out it really was.

Lauren: Yeah, low and behold!

Jenny: Yeah, funny that!  There's lots of people that relate to what I was writing about it and making work about it. And it just sort of blossomed from there. So I kept doing it while at college. That's what I chose to do with any extra energy I had — I made something for Instagram with it. I'm so glad I did. Because now there's so many people in that community and it keeps growing, and freelance work is building off the back of it, and it's become what I do know. I'm out of education now. And This Thing They Call Recovery is my job. That's what I do. And I'm so glad. I'm so glad I never went down the path that I thought I was going down. Sometimes it's just things that happen. You don't mean it to, you don't expect it to, you don't plan for it. And then sometimes it just works out. It's working out for me so far, and I'm really enjoying it. I'm glad that I had this random thing happen. I'm glad that Ryan randomly told me, “Hey, I think you should start a blog.” And here we are years later. And it's still going. I mean, the blog, not so much. But the other parts.

Lauren: The social media accounts. The big thing about this is that it has given you the spotlight to become an advocate that other people can lean on, can look to, when they're navigating their own issues. And find whether it's inspiration or comfort, or somebody who gets it. To be able to have found community and also be actively learning from that community as you do. It does become a gift. One of my good friends in this community has said to me, the price of admission is very high. But man, we wouldn't change it for a thing, because the people that we meet, the stories that we're able to hear and share and what we're able to give to one another, is kind of priceless, isn't it.

Jenny: I always say that if I could click my fingers now and be healthy, I would do it. There is no doubt about it.

But if I could go back and ensure that none of this happened to me, I wouldn’t. I wouldn't change it.

I wouldn't go back, because I've learned so much. I've met people. And I think I'm a better person. I don't know what would have happened. I'm not pleased that this happened to me. And I'm not grateful for it. But it has happened to me, and life's gone in a different direction. And while it's frustrating, and it's definitely not all great, it’s not all bad, either. I recognize both sides of it. So no, I wouldn’t.  If I could change it presently, I would. But if I could change stuff in the past, I wouldn’t. I would just leave it as it was, I think, because it’s brought me here and I'm quite happy at the moment.

Lauren: Well that’s the thing, if it's gotten you to a place where you're able to find contentment, or given you a lesson, that's been something that you'll carry with you. And that has shaped who you are. You touched on it earlier that this disability isn't your identity, it's not the sum total of who you are. But it's a part of who you are. And it's a very vital part of who you are, and has informed the way you relate to the world and to other people, and perhaps with more empathy and compassion because of your experiences.

Jenny: I like to say that I am defined by my chronic illness, but that doesn't mean it's a total sum of who I am. I think quite often people might view being defined by something that could be negative to be a negative way to think about it. But I'm just quite neutral about being defined by my health condition, because it's such a major part of my life. I've grown up with it. I don't have a clue who I would be if this hadn't happened to me. If that's not a defining part of who you are, then I don't know what it is. If you can choose what you're defined by — if you're defined by your job, or a way that you live, or a culture that you're in, or whatever it might be — this is how I know myself, and I don't know myself any different. So, being limited by something … absolutely that's a negative. And I really don't like that part of it. But being defined by it, that's fine by me. Because it's such a massive part of my life. I don't want to ignore it, I don't want to push it to the side. And I don't feel like people should need to, if they don't want to. Obviously everyone is going to have their own views on this. And I'd never want to sway anyone else, and how they speak about their own experience. But at the same time, I don't want someone to tell me that how I'm talking about my own experience is wrong, or the language I use to describe how I feel about my own health condition is wrong. Because it works for me, and that's what works for me.

Lauren: I couldn't have summed it up any better. I mean, that really is this discussion that is ongoing in this community. We are a community about identity and diagnosis and experience, and what makes us who we are, and how we allow the world to shape us, and how we want to shape the world back. It is this push and pull, isn't it. It's a constant rebalancing, but it is a dance, and you're doing the dance. I'm sure there are people who are tuning in who are also living with ME/CFS, and who might be living with another invisible condition that's chronic. What would your Top Three Tips be for someone who is living this invisible chronic illness, invisible disability identity? What would your Top Three Tips be for someone going through what you've been through?

Jenny: I think the top ones would be that you are not it alone. Even when it really, really feels like it. I know sometimes it really does, and it can be very isolating. And particularly if you're new to it. You’re just thrown into this new space. You don't have a clue what to do with it, and there's all these different terms floating about, you don't know what they mean. It can be very overwhelming. But you're okay. Other people feel the same. And there’s lots of us here. There’s a big community all around the world of people that maybe don't have the exact same connection, or don't have the exact same severity of condition, but we can relate to each other in some form or way. That's what I tend to focus on with my work. I don't focus on particular symptoms, per se, I just talk about how those symptoms have impacted my life. And I think, regardless of your condition, or what stage you're at, how long you've suffered with a certain condition … it impacts your ability to work, or your ability to study or travel or live independently, your different relationships with people. Including yourself. There's a whole process of, how do you feel about yourself. Your sense of self-worth is quite often changed or shaken up. Or body images. It's a lot to process and go through. And it happens sporadically; it can suddenly hit you after years. But you're not alone in that. And there's other people that are going through the same thing. You should be allowed to share. I know not everyone has the space where you can, but there will be spaces online where you can, because we get it, and we understand. And even if we don't have personal experience of what you're going through, we will believe you. If you say you've gone through something … okay, I believe you.

And I think that's such a big thing for people, just to know that you're not the only one, and what's happening to you is valid and how you feel about it is valid as well.

Even if it's maybe more negative one day, or more positive one day, or somewhere in the middle, you're not wrong for how you feel about it. And if it varies day to day, that's not wrong, either. Sometimes I might wake up and feel pretty good. And by the end of the day, I'm in a really bad mood. But you know, that's just how it goes sometimes. Or sometimes it's the complete opposite way. I'll start the day off not feeling great. And then I go online, and I've talked to someone that has a similar experience, and suddenly I feel much better. So it’s so up and down. And I think knowing that that's all right, and you're not doing anything wrong … it’s just how it goes. And it will be like that. And there is someone that will listen to you somewhere. There is, there's a whole group of us. It can feel so isolating and it can feel really scary. But I think sometimes knowing that you're not the only one helps. Even though I would never wish this on anyone. And so many people have said to me, “You know, I wouldn't wish this on anyone. But I'm so glad that I find people that understand.” We have a sort of instinctive need to find people in a similar circumstance, even though it may be a negative circumstance. You wish that they hadn't gone through that, but there is a comfort and knowing that you're not the only one. I think that's what I would really want people to know … no matter if you're new to it or not, it will vary, it will go up and down, you will think differently about it. But you're not the only one going through it. There will be someone somewhere that you can reach out to, just to share. And like you said, just to be honest. I can't fix anything for anyone, but I can listen, and I can be there. I think sometimes that's just as helpful, if not more so than anything else. 

Lauren: I love that. You're not alone.There's community out there. You're valid, we believe you all. What about Top Three things but give you unbridled joy when you need to light yourself up, when you need a comfort activity or want to indulge yourself in something and treat yourself. Where do you turn?

Jenny: I think it varies a lot, depending on how I feel. If I feel up to it, I love getting outside. I just love it so much. Where I live is beautiful. The Scottish landscape is beautiful and I'm so lucky to live where I do. That is number one. If I have the energy, that's what I'll choose to do, go for a small walk or something like that. If I'm able. Not at the moment … I’m not leaving the house. Being outside is such a joyful activity for me and you can tell; I just walk about with a massive grin on my face, even though nothing's even happening. I'm just glad to be there. So I'd say if I can, then that's what I like to do. But obviously, I spend a lot of my time in the house. And before COVID and before my parents were here a lot more, I was in the house by myself all the time. And the one thing I found really helpful is finding some sort of creative outlet for what I'm doing. I've always loved things like drawing; it just makes me happy. But for years, I didn't do it because my hands shook too much and I couldn't hold a pencil, or I’d flick the pencil across the room. But then I found I could do digital drawing, and that was a bit easier for me. I'm very lucky to have access to those things that have allowed me to take that hobby back up. But anything creative that I feel like trying … I scrapbooked for a while. My work makes me happy. That can be a negative, because sometimes I just don’t feel like I'm working, so I push it too far. And I don't realize it.

Lauren: I do the same thing with the podcast. I totally get it. When you find a passion that happens to align with what you get paid for it, it's hard to stop working.

Jenny: I know, it's weird, it doesn't feel like work. But also you do end up just working at strange, random times. I definitely do, because I have to still be flexible with things. But it makes me happy. And then making stuff for the Instagram, that makes me happy. Talking to people. I really don't know what I would have done if I was going through this without social media. I mean, I'd be screwed. I would just have been in this room, staring at the same four walls, by myself. Because quite often, I'm not well enough to watch the telly or reading a book’s really difficult for me or listening to something. But I can sit on my phone, and I find it okay to scroll through things and comment here and there, and talk. And that makes me so happy. The people I've met online, hands down, the best thing about starting the whole thing is the friends that you meet. And I forget I've not actually met them. I will probably will never meet them. I just forget, I think, because you start knowing each other through something very personal and it sort of cuts out all that small talk. Suddenly you're at the heart of what is going on with someone.

You're sharing so much so quickly, that you do make such great friendships online. And I'm so grateful for that.

It's absolutely the best thing that could have happened, meeting people in a similar circumstance. They can always cheer me up. I go to them for that. And I'm so glad that I have them. I’m so glad that I live in a time where that is possible, because I just cannot imagine people who, for years and years, didn't have access to these communities. Because that's where I meet people. It was the only way, because I didn't leave the house. That's the only way for me to make friends. Sometimes it gets a bad rap, being on your phone all the time or being on social media all the time. Or, why don't you do something else. But that's not possible for everyone. Not everyone can put their phone down and go for a nice walk, or can put their phone down and do some sort of wholesome activity like reading a book. Sometimes all someone can manage is being on their phone and scrolling through social media. And it's not necessarily an entirely negative thing. It brings so much joy to people. Obviously it has its downsides. But it brings me joy. If I spend the day scrolling through my phone, so be it.

Lauren: Exactly. Sometimes that is just how it is. Now, what is your ask of your listeners today? What can they do to support you and the community that you live and commune with all the time, in the work that you continue to do?

Jenny: Like I said, I do freelance work now, but my community online is my number one; I never want to stop doing that. I love meeting new people online. I'm learning from people. I have people that find my account all the time; they just stumble across it. And the number one comment I get is, “Oh my goodness, I'm so glad I found this, because this is what I needed to see. I needed to read this today.” I'm sorry that people are going through something difficult, where they need to hear these sorts of things, like: ‘You are valid’, ‘Rest counts’, ‘You don't have to be productive all the time’. But I know what it's like to need to hear that. And I think that's why I make the work that I do. I needed to hear it myself. If it wasn't that I needed to hear it yesterday, then I needed to hear that 10 years ago when I was 16 and I had no idea what was happening to me. I love meeting new people online and helping people. That's why I do it. I like the fact that it helps people, so I'll continue to do it. 

Lauren: People get on there and like it and comment and get involved. 

Jenny: Yeah, I really like talking to everyone. I get so many messages from people and it's such a community. I’m really proud of the community that's there, because it's very understanding, and people are really nice. We all are there to support each other. And it's my favorite thing.

When I see people making friends in the comments, it's my favorite moment.

People with similar experiences, or the same condition … people relate to each other. It’s a really nice space. I try really hard to make sure that it's a pleasant space for people to be understanding and a safe space for people to share. People do share very honestly about the ups and the downs. And it's a place that people go to when things are difficult, because I think we all need that … we need a space to go to share honestly. That's why I keep doing it. And that's why I've built on it from there. That's why I now work with different charities and things. I recently started a clothing line. I do T-shirts, I do prints. The the number one bestseller I have is a T-shirt and it says “Everything hurts, I feel like death” — surrounded by these shapes. Everyone loves it, because they say that this does the talking for me if I am not well enough to do it myself. People wear it to the doctor’s, to appointments. It sums up the community that I have online of people that are just very honest about how they feel about things. And that's not a negative, even if you're going through something negative. We're all just sharing, and we're all sort of trying to have a laugh about it. But we're not making light of it. We all recognize the fact that it's a really difficult situation that we're in. It's so lovely to have a community like that. And I just go back and continue to grow it and continue to build it. I didn't mean for any of this to happen. Who knows, I'm excited to see what will happen next, because it's just morphed into its own thing as time has gone on. So who knows. I've done it for two years now. So two years down the line, who knows what will be happening. But I want to keep doing it. I feel really lucky that I sort of stumbled upon something that I'm really passionate about, and I want to do forever. I have friends that are healthy, and they have the exact opposite problem to me. They have all the physical capabilities to do whatever they want. They're just not entirely sure what that is yet. I have the opposite problem. I know exactly what I want. I know I want to do, and I found it. It's just gonna take me longer, I think, to do stuff with it and to build it. But that's fine by me. I mean, who says it has to be done by a certain age or whatever. I’m just gonna roll with it. And we'll just see what happens.

Lauren: You're so good at being in the present moment. That in and of itself is such a huge note for everyone who's tuning in. I think we spend a lot of time in the past — the person we might have been at one point, or in the future, what will it look like. But what if we're just here in the moment, right now, and we find people who get that, and we just keep living through it. Having that perspective, I think, is so important. I'd love if you could remind everyone where they can find you, and find your work as well.

Jenny: So my Instagram’s where my work mainly is, and that's @ThisThingTheyCallRecovery. And that's my website as well, ThisThingTheyCallRecovery.com. That's where I place everything — work that I'm doing, different projects and things, that's where it all goes. The blog isn't as current anymore, but it's all up there for anyone to read through if they're new to it. I just keep it all up; even if it's not being particularly updated anymore, there's a whole host of things on there that I hope will help people, no matter what kind of stage they're at, in the community or are new to it, or whatever it might be. Hopefully there's something there that you can relate to it, and is helpful.

Lauren: Jenny, is there anything else you'd like to share with anyone before I set you free? 

Jenny: I think I would like to remind people again that it's a really difficult thing that a lot of us are going through, and it's all right if that's getting to you. You don't have to find a silver lining in it all the time, and you don't have to have a positive spin to things. And if you're going through something particularly difficult, it's all right if it's just difficult and you're just getting through it and there isn't a positive to it you can see right now. If you don't want to, if you can't find it, that's fine, too. Hopefully in time, things ease. But I always say to people online that I hope today's being kind to you … because I don't know if it's going to be good to you, I don't know if you're having a good day or a bad day. But I hope the day has been kind to you.

So I hope whoever's listening, that your day has been kind.

Lauren: Beautifully said. Jenny McGibbon, it’s been an absolute honor to have you on the show. And I'm so excited to share your work with more people out here in the ether. Because it's been so important to me and so important to so many members of our Spoonie community. So thank you for all that you do, and for creating that safe space for all of us to just be here right now.

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