Transcript - Episode 11: Finding My People - Online Communities

You're listening to the Unfixed podcast.

[Stefanie] We're all going through our own struggles I think you know overall I find the community really positive, uplifting, inspirational, you know I learned so much from them and again you can just be part of it you don't have to put all this pressure on yourself to constantly be making content or constantly be commenting or replying.

[Martel] Hi everyone this is the Unfixed podcast and I'm your host Martel Catalano,. The chronic illness community often talks to each other but in this show we open the dialogue, exploring adversity through different walks of life to recognize our shared humanness. These intimate conversations are between people who are creatively contending with diverse challenges. One person has a chronic health condition, because they're often experts in facing the hard stuff. The other is a professional working within a relevant field or facing their own unique battle. Each episode is an invitation to lean into curiosity and compassion while recognizing that we can live powerful lives despite, or sometimes because of, our circumstances. This podcast is part of a suite of resources provided by Beyond My Battle. If you feel inclined to support the show you can do so at BeyondMyBattle.org/donate.

[Music]

[Martel] That quote we opened with was from Stefanie Grant. She's a subject in the feature documentary

Unfixed. Stefanie is 32 years old and has lived with constant 24-hour pain for over 10 years. She has multiple facial pain disorders and Fibromyalgia resulting in spending most of her 20s in and out of hospitals and feeling like she'd lost the life she had planned. In 2012 she met a very special person who encouraged her to go online and start sharing her experiences. It was there that she found many friendships and a community where she finally felt she belonged. At the same time she started her blog there weren't a lot of people out there talking about Orthographic surgery and chronic pain. Those who were glamorized the process and seemed to have success within their treatments. Her story was a bit different, many things were unusual and things didn't ever go as planned. In 2014 she was nominated for three UK blog awards and cried upon the news not knowing her story and sharing were making such an impact in the chronic pain community. Stefanie continues to write and share online through multiple channels adapting her work life and advocating for others through her dedication to making the most of a difficult situation. And today we're excited to hold space for Stefanie to share a conversation with another amazing young woman Jenny McGibbon. Jenny is a disabled designer and marketing graduate from Scotland. She lives with M.E otherwise known as Myalgic Encephalomyelitis. She was born with a birth defect known as Gastroschisis and as a result now lives with Short Bowel Syndrome, chronic internal bleeding and Iron Deficiency Anaemia. At 16 Jenny found herself in and out of the hospital almost weekly. She couldn't relate to her peers anymore suddenly in this new medical space, but she couldn't relate to anyone there either. She was always the youngest person in the waiting room by several decades and it became clear that from the posters on the wall to the leaflets on the tables to the websites, the world of chronic illness wasn't made for young people. She found herself longing for more representation, more youth, more color and more information about how to live with illness instead of just cure it. Now in her mid-20s with a thriving graphic design business and a blog titled This Thing They Call Recovery read in over 90 countries she's determined to help make sure that no young person feels like they're dealing with their health issues alone. Together these two creative women are here to talk about their experiences sharing and growing and finding their people within the online chronic illness communities. So Stefanie and Jenny I'm so excited for this conversation and delighted to introduce you two to each other

[Stefanie] Hey it's lovely to be here thank you for having me.

[Jenny] Yeah it's lovely to be here and I'm sure even though we have some slightly different conditions I'm sure there's going to be a lot that we can relate to each other on.

[Martel] I would love to jump in with this first question and really that's from really what I can gather you've both found your way into the online chronic illness communities first through blogging about your health experiences. Can you talk about your initial motivation to share your stories?

[Jenny] Well I started my blog first without any kind of social medias attached to it and I started it initially because I was taking time out of university because of my health conditions and I was bored. You know I feel like a lot of the time you're talking about chronic illness no one prepares you for quite how boring some of it is. I mean there's a lot that's, you know, scary and, you know, overwhelming and hard but then there's also those times where you're just lying in bed yourself and you know you've maybe had to give up certain hobbies and I definitely had to do that. I sort of found myself at a loss and didn't really know what to do and my boyfriend actually suggested that I start a blog and I was studying fashion at the time and I thought well I can't start a fashion blog because I live in pyjamas, and they're not even nice pyjamas they're like a 10-year-old t-shirt or something. You know, I can't, no one wants to read about that. And he said well why don't you share about being sick and what that's like for you. And I sort of stumbled across the spoonie community online by accident because you know I was young and I couldn't relate to anyone that was sick and I didn't know any other young sick people and I found the spoon theory online while you know googling as you do you know your different conditions and stuff. And then I then went on to social media and I started looking at hashtags and things related to my conditions or just chronic illness in general and I found all these young people sharing about their experience and I thought okay this is where everyone is, you know, if we're not in the physical spaces because you know we're spread all over the place and lots of us can't leave the house anyway, you know, we all come online. And I met so many amazing people and I made friends and it was my way to connect with people and relate to people again and more and more I just thought I want to be a part of this community and I was learning so much and I was, you know the community I found generally is very welcoming and I found it a real comfort to be able to relate to people that were going through something similar. And I just engaged with it more and more and then that's when I set up my own social media pages which are now bigger than the blog itself. I sort of switched around from what started as a blog is now sort of a social media space but I just, I wanted to raise awareness I suppose. I didn't think there was enough of it aimed at young people and I sort of back when I started I thought you know I can't really be angry about there being a lack of awareness if I’m not willing to raise any myself. And years later I realized that that's quite a privileged take to take on it, and that obviously you don't owe anyone, you know, you don't have to share anything you don't want to in order, you know, you're allowed to be angry that there's not enough awareness. And obviously it's not safe for everyone to share and I totally understand that, but I found comfort in it and it was helping people, you know, me sharing honestly was helping so I just kept doing it and here we are years later you know I'm still doing it.

[Stefanie] Actually scary how similar our stories are like there's literally carbon copy of, you know, the same sort of journey of being there and I was like constantly reliving the trauma of everything I was going through and I was sharing that with the people that were closest to me but they weren't able to understand. They couldn't and I spent like a year and a half struggling and searching for answers, late night on the phone you know sitting there just scrolling through google and feeling completely alone. And as you said in my intro one of my very good friends said to me why don't you just start a blog and that was where it all started and I had no idea what I was doing I'd never done anything like this I’m a bit of a technophobe I, you know, I had no social media. So it sort of evolved from the blog and then again moved into this sort of social sphere where everyone was and started connecting and I realized I could be sort of the middle person in it. Just because I wasn't suffering from a specific you know illness or pain condition, I might know other people who are suffering with those things and I can be the person in the middle that sort of co-op so I helped to grow the community as well as being part of it. So for me that was a great encouragement for me to carry on because while I may not be able to help people with my own experience and what I have to say I might know someone else who can

[Martel] Yeah it's so great that you both write about what it's like to have a chronic illness and not just necessarily your chronic illness and I think that's a really important part of being part of an online community is knowing that it's not just about you and your specific scenario but like I always say the work we do at Beyond My Battle like the themes the emotional themes that really run like a thread throughout every chronic illness like the shame and the isolation and the different, like, feeling different just the really like fundamental themes and maybe that's what we can we can talk about. And I’m wondering if you felt like there was more involvement on your blog or your social media outlets because you had opened up the conversation in such a diverse way?

[Stefanie] I think for me mine was sort of an evolving process because weirdly I started off having one surgery and then I had complications and then I ended up getting more problems off the back of that and then sort of as my journey evolved everyone around me their journeys were evolving and all my friends within the community they were they were experiencing new symptoms, new problems, trying new things you know being referred to new treatments and then I don't know the story just evolves and evolves and keeps growing and the more people share the more information is out there. You know and as I think all of us, you know, what we're trying to do here is be sympathetic to the fact that obviously what works for us or as a group may not work for other people or other groups but our main focus is always on just having that information out there and just trying to be as authentic and open as possible.

[Jenny] Yeah I totally agree with that like I’m the same. It just evolved. It kind of took on, I think when you share online it sometimes takes on a life of its own because if it's reaching people that you didn't really expect it to then you almost sort of shift how you're talking about things because my blog the reason it's called This Thing They Call Recovery is it was just meant to be about me and no one was really meant to read it [laughing]. You know it wasn't meant to be something that, you know, anything came of I was just using it as a hobby you know something to do and I thought if anything it will sort of give me a sort of backlog where if I have to go to the doctor for example and I can sort of track my ups and downs because I'll have dated blog posts. You know and that's all it was meant to be for. And then as I started sharing online and like you said, you know, you do connect with people with lots of different conditions because it's not just the symptoms you're talking about it's the impact of those symptoms on your life. And I think even if you have very different conditions or even if you have

the same condition but it, you know, a different severity or you have, you know, different symptoms along with that there's this sort of undercurrent that you can all relate to each other on on some degree and I think that's where the great bits of the community come from is relating to each other on not just the symptoms but how they're affecting you. You know if they're affecting your home life or your ability to work or your ability to study or, you know, impact your friendships or your relationships or whatever it might be, you know what you were saying Stefanie about people close to you knew but they can't really understand unless you know they've dealt with it themselves. There's just something different about talking to someone that's been there first-hand and I think that's what's so helpful for people and that's why you know we keep showing up online because we need the community as, you know, as much as anyone else. We form these communities online and we sort of provide spaces for people to share but those people sharing help us just as much as anyone else.

[Martel] Yeah I feel like one that's one of the things that I hear the most is like that people don't really understand and I typically like to push back on that if someone says it because oftentimes and this is obviously not the case for either of you [laughing] since you're very, you know, vocal about your situations but I always ask people like well have you explained it? Because nobody is a mind reader and nobody can understand you know something you don't talk about right and so that's a real, that's really fundamental to what you're both doing and why I love

you know your connection to your communities because you are taking that initiative to talk about it and Jenny I just want to go back to what you said earlier about like the privilege of being able to share. That's something that I’ve had to really relearn myself too because you're so right not everybody has been given the tools to become vulnerable, maybe it's not safe, maybe they've undergone some kind of trauma along the lines of sharing that they don't feel comfortable. And I’m an advocate for people sharing but at the same times always have to remember that it's not it's not necessarily okay or you know safe for everybody. Do you have anything more along those lines because I think it's such an important thing to recognize as we talk about communities and sharing?

[Jenny] I think it's such a cycle isn't it because we're not taught how to talk about these things really so it becomes a sort of taboo but then because it is seen as that it becomes more difficult to talk about it so no one does because everyone feels awkward and then it just continues from there because no one's talking about it so it's always going to be awkward. So it is definitely difficult and it's obviously much more difficult for different people depending on their circumstance and I just I sort of recognize the fact that I'm very lucky and that generally it's it's been quite safe for me to share and if I can do that and it helps someone else that maybe is not in a position to do that but they can relate to it and it helps them feel seen and it helps them maybe process things that you know maybe they can't talk to people in their personal life or whatever it might be that I want to make sure that a space that I’m creating online is a safe space.

[Martel] You know on the same topic of like people getting it and people understanding and people sharing do you feel like more and more people are feeling comfortable with sharing and on the flip side of that do you feel each of you that more and more people are potentially coming to understand it more and I mean I have to just say like even as a secondary question to that like what has Covid done for helping people understand more? In your opinions what do you both think?

[Jenny] It's a bit up and down in terms of whether more people are understanding or not I think you know my opinion on that changes every day if not every hour because something will happen and it will feel like a breakthrough and you'll think okay yep we're getting to people but then something else will happen and it makes you realize that there's actually such a long way to go and it's such a roller coaster and it's quite draining sometimes that up and down of you know, and the whole community goes through it. I think the last year, I mean a year ago when everything sort of kicked off with Covid I had quite a lot of healthy people around me saying you know maybe this will change people's attitudes, you know maybe this will affect things, maybe people will understand more and I sort of said that at the time you know I'm not holding my breath. I don't know, you know, I don't know if it will. And now a year on I don't, I don't know if it if it has. I guess time will tell and I'm sure in some spaces or for some people it absolutely has helped them sort of gain an understanding. But generally you know I'm not sure it's moved forward that much. I mean I know for a lot of different people with different conditions this last year has been really draining having to constantly feel like you have to, you know, kind of make people believe that you have the same amount of value or the same amount of worth as a healthy person. And it just feels like we're having to continually send that message and it just seems it's relentless sometimes I feel like but hopefully you know in some places somewhere it is you know reaching people but yeah it's very up and down I don't know.

[Stefanie] I think for me with the whole situation of you know the awareness and you know helping people to understand I spent so many years looking outside and feeling quite angry and anxious and upset that people just didn't get it and then now I just try and focus more on bringing it back into me, back into the community I'm part of and just saying like it's okay people don't understand because they're not going through it and that's absolutely fine. You know everyone's going through their own, their own, battles in their own way and you know the whole lockdown situation people got a little taster of what it's like to feel isolated but people obviously could go out and they could still go on walks and have some sort of freedom as I feel like they really couldn't truly understand what it would feel like to be in bed laid up in pain you know not able to walk, eat, talk you know all of these things that you know people within the community may be going through. But I think it's about reframing it and understanding that yeah they can have a little taster and they can understand for a little bit but ultimately you know it's about looking at ourselves and thinking about how we can be comfortable in our little bubble and our little society our little community and less about trying to make people understand and just sort of accepting and sort of easing into it and just understanding that everyone's different.

[Martel] Yeah and everybody is different and I feel like that's such a delicate balance because we do need to be advocates those of us who are comfortable with being advocates need to share about what's going on in this community but also recognizing of course like that we don't understand what it's like to be this minority right like I think this has come up so much in the last year especially at least well not just here in the U.S but everywhere is like the minority voice is becoming so much stronger and so much stronger and you know for me particularly as a white woman not knowing what it's like to be a person of color for instance but I know what it's like to be someone with a disability and I can talk about that and knowing that nobody really knows anybody's lived experience and that's really humbling and then balancing that with but I still need to talk about what it's like to be a part of this population.

[Stefanie] Yeah I completely agree with that and again I feel we can only ever truly share from our own opinion even if we're talking on behalf of other people and we you know people have given us the permission to talk on behalf of them because that's one of the biggest bug bears I have when someone comes up as an advocate and they sit there and say that I’m talking for everyone who has this particular condition or everyone in the community and I think well you're not because you don't know me and you don't know you know my friends you know we're all going through individual things we're all having our own lives our own experiences and I think that's a really delicate balance that we all have. I know Jenny specifically like reading all your content that you've always been very careful the same as I have about the way these things come across and being really sympathetic about having that balance between you know sharing your own opinion but also knowing that you're not talking on behalf of everyone else.

[Jenny] Yea definitely I think you can only really speak from your own experience and I think it's just important that we make that really clear in what we're doing online because absolutely I cannot speak for everyone that has the same conditions as me you know we are all individuals still and I wouldn't want to either you know that's not, if we're trying to share our own stories and then hopefully people relate to that or maybe there will be things that people can't relate to because we don't have the personal experience of it like I don't have the personal experience of lots of things being you know a very privileged person but I can listen and I can learn and it's about recognizing that people are different and have different experiences and that doesn't necessarily like cancel out anyone else's. I think going back to what you were saying Stefanie about people kind of the last year getting a taster of what this life is like and I think for a while at the beginning like I was almost a bit bitter when I realized that people were struggling after being inside for a few days or you know a week or two and I didn't really know how to process that because, you know, I'm someone that's been in the house for years you know for the majority of the time anyway and it was quite jarring having that be on such a large kind of public scale you know through the media and things like that to be, for it to suddenly people take notice of how difficult that can be and I was thinking you know that experience isn't the same. But actually as time's gone on I think it's important you know for me to kind of unravel you know why I felt like that at the beginning and why I had that sort of immediate reaction and actually no they can't relate to you know what it's like to be sick or to be isolated when the world isn't watching. But I also don't know what it's like to be kind of thrown into this in a sort of mass scale when you know lots of people are going through it and it's very much always in the public eye. I don't know what that's like either so I think it's important that even individually we sort of recognize, you almost have to remind yourself every now and again that everyone's individual and just because they, you know, it's perfectly valid that they're struggling with something that's new to them like being stuck in the house.

[Martel] Not that I have as you know much of a social media following but I, as a someone who does a lot of public speaking about chronic illness and leads like retreats about chronic illness I find that that's a difficult place to be in right because you're like this community leader and this voice but then you have to always check yourself right you like constantly and I think you both do such a great job of that like Stefanie acknowledged earlier about really sharing your experience and your perspectives but always knowing that it's you're not speaking on behalf of other people but you know the whole concept of your role is that you kind of are [laughing] speaking not on behalf of but as a as a voice for this community so it's really a difficult role to be in so yeah that's, those are all such great points. And I wonder what obstacles or challenges that you've each faced whether it's in your role or just being a participant in the online communities as you continue to spread awareness. What have been the challenges or obstacles there for each of you?

[Stefanie] I think for me to start with it was all about having the time and the resources to be an active member within the community. I felt like there was such a demand on me it was like I, you know, I was one of the first people out there doing it and you know saying the things as they were and you know trying to be positive about it but also saying come on this is a little bit rubbish and it's not going to plan and this is the way things are and I just remember receiving so many private messages from people who weren't ready to share their stories but they were sort of waiting for me to share mine so that they could share that and I feel like there was a, I felt, a lot of responsibility on my shoulders to make sure that I did the right thing and I did the whole situation justice. You know my blog's I think 11 years old now and at its peak I had two million readers and I just had no idea how to deal with that it was all completely new to me and there were so many times where it was just overwhelming and obviously you have people on the back of that while most of my experiences were really positive and a lot of the stuff I was putting out there was really well received you're obviously always going to have trolls or people who aren't in the community for positive reasons. Like there's so many people weirdly masquerading as chronic illness or spoonies who are, they have nothing wrong with them at all and they seem to lie and try and gain access to the community so that side of things can be a bit difficult. Obviously this idea of having the balance about you know sharing good quality posts means that it obviously takes a lot of time and effort to craft those posts and I think like obviously with you guys creating audio podcasts, things like that, Jenny producing loads of like amazing visual communication tools like it just that's a lot of time and effort and that's something that's always been again this idea of balance something I really struggle with so that's one of my main obstacles is making sure I’m actually able to put the content out there and it's content that people are going to resonate with.

[Jenny] Yeah me too it does take so much time and effort and I think particularly when you are sick you know it's even more so and I think sometimes people forget that something that shows up online, it didn't just appear there out of thin air you know someone's taken a lot of time and effort and energy to make it or to write it or whatever it might be and I found it, there was a period of time where a lot of my work was getting taken and it was getting edited in all sorts of different ways and messages were getting put along with it that you know I didn't agree with. And obviously you know I'm not saying that everyone has to think the exact same as me but I want my work to be used in a way that's respectful for other people and I don't, you know, I don't want it attached to something that is potentially you know dangerous or uncomfortable for someone. I just found there was a period of time where it was just everywhere and I don't know if it's one of these things that just sometimes your work or your words find their way into a section of the internet [laughing] that you just weren't ready for and people find it that aren't really in the community or aren’t in your community. I think generally you sort of, you end up finding people that you're quite similar to in terms of how you kind of think about things you know Stefanie what you were saying about how you're realistic but that doesn't, you know you're positive with it but you also will admit that it's difficult and it's hard and it's not all brilliant all the time and I’m the exact same it's difficult a lot of the time and I think that's something within the community that I think sometimes gets misinterpreted as if you're sharing honestly about something that is quite negative because let's be honest it is quite a lot of the time being sick. But that's sometimes, I think people can take that as if you're being negative about it when actually I don't feel like I'm being negative at all I’m just being honest and it just so happens that what I'm sharing or what I'm going through or what I'm feeling isn't particularly positive in that moment but I'm just being honest and I feel like it should be safe for people to share the negative parts as well as the positive parts and I want to really make sure that the community that I'm trying to build online is a space where people can share, you know, all sides of what they're going through and there isn't, you know, you don't have to hide certain parts or you don't have to sort of censor yourself or anything like that.

[Martel] You bring up like that it takes a lot of energy and it's exhausting and these are the things that kind of come with creating these communities for better for worse and one of the things that I know I've personally experienced in operating a community within the non-profit space is that we get messages all the time from people and I'm not saying this is a negative thing I'm just saying this is like an inherent part of running a community and I know that you both experience this too, the direct messages that you get from people who want to share their health story with you. And at the beginning that's, you know, it's kind of exciting and you want to be like the person's best friend and you want to be supportive to them but after they keep coming in and they keep coming in it can be it can really take a toll on you and I don't mean to say that we shouldn't respond to every message that we get and we obviously, I don't want to speak for both of you but I’m sure that you try to but it's, it's impossible to sometimes first of all and then secondly it's like it has to be an act of self-care and self-preservation to not keep pouring from that cup because you can't pour from an empty cup. And I wonder what you both feel about that?

[Stefanie] For me at the beginning like you said you have these intentions that you're going to reply to every single person but the problem is once you reply that person then replies to you and then you get so involved with you sort of end up down the rabbit hole sometimes and you're trying to manage your own health, you're trying to share online and I remember reading a book years and years ago by this lady called Gill Edwards and it was all about sort of like loving yourself and putting yourself first and as an author she used to receive thousands and thousands and thousands of letters and she tried to reply to every single one and then she would receive more the same way we do you know and you have all the best intentions and she said the best thing I can do is write a book and put it out there and let everyone else read it because I can help more people that way than I can ever by individually replying to all of these messages that I receive and that was sort of like a light bulb moment for me because I realized it's not actually about trying to reply to everyone it's about communicating to multiple people in the best way you can and for me I don't post very often I don't blog hardly at all anymore which is really upsetting for me but I just can't manage it with everything else I have going on so the best thing I can do is when I do it it's so considered it's so full and I'm very much one for like written text communication and that's how I express myself and off the back of that I believe that I help more people than I would ever by trying to just reply to individual messages.

[Jenny] I love that, I love everything you've just said like I totally relate to that and I think like once, when you start and it's not as much you know the communities may be smaller, I know for me anyway I thought it was really important that I tried to reply to everyone as quickly as possible you know I didn't want anyone waiting for anything and now it's sort of got to the stage where in terms of like comments under posts and things sometimes I can't you know I just I don't reply to them all but I read them all. And I sort of realized that actually quite often people aren't actually even looking for a response like I've opened up a space for people to share and that's what they're doing and that's what it was for you know that was the point.

[Stefanie] A lot of people get hung up on the idea of if you put content out there and you've put a lot of time and effort into it you need to have this sort of like immediate you know feedback loop of you know I need so many likes, no one commenting, why is no one engaging with it and the fact of the matter is the community we're in there's so many people out there that will never like a post or comment or direct message you but they're there, they're seeing your stuff and you can make a difference just be by being there you don't have to go out of your way or put pressure on yourself or feel guilty about trying to like as Jenny said stick to a schedule, stick to the same pace that you're currently running at you can take a break and it's okay to take a break and I know I've had periods where I’ve left for you know three to six months at a time and I come back and it's like nothing has changed you know everyone is still the same everyone is still as friendly, as welcoming, there's new people out there, there's new content you know it's always like very exciting and while it is like quite a heavy subject and we're all going through our own struggles I think you know overall I find the community really positive, uplifting, inspirational. You know, I learn so much from them and again you can just be part of it you don't have to put all this pressure on yourself to constantly be making content or constantly be commenting or replying.

[Jenny] I think there's a lot of conversation around social media particularly in a sort of self-care kind of viewpoint that it's bad to spend lots of time on it and you're sort of wasting your time or you know it's bad. You know obviously there are negatives to social media absolutely but I think it's also such a privilege to be able to step back from it and do something else. I mean for so many people I mean take me for example I can't go for a walk, you know, that's always a thing of get outdoors, you know, get some fresh air and I think I would love to, you know, if I could but I can't or I can't pick up a book or you know something that for lots of people you know you just don't think about it.

[Martel] Yeah thanks for acknowledging that I do think that it's really such an asset to some people like you said who can't maybe socialize in the, in the way of other people and then for other people it's so anxiety-inducing and it's really depressing and there's so many mixed aspects and components to it so thanks for acknowledging that. Thank you both so much for joining us and for all the important work that you're doing for this community I know I appreciate it, I love the work that you both put out there and you're definitely making us all feel a little less alone so thank you so much for being part of this episode.

[Jenny] Thank you

[Jenny and Stefanie] Bye

[Martel] Listeners can learn more about Jenny and Stefanie by heading to the episode page on Beyond My Battle dot org or Unfixed Media dot com.

The Unfixed podcast is a collaboration between Unfixed Media Productions and Beyond My Battle, a non-profit helping people reduce the stress of illness and disability. If you want to learn more about the Unfixed documentary visit UnfixedMedia.com or subscribe to the Unfixed community Youtube channel. As always if this show or particular episode resonated with you or helped you in some way please leave us a review on Apple podcasts or share it with your friends and family. Each episode is recorded and edited by Starling Studios.

[Music]