AMI PODCAST
Season 2 - Episode 11
Sick Little Secret: The Pros And Cons Of Coming Out With MS
One third of people with Multiple Sclerosis (MS) keep their diagnosis classified. Of those, one in ten keep MS a secret from family and even romantic partners. Ardra Shephard and Alex Hajjar are talking with Juan Garrido about his experience as a member of both the queer and MS communities about the similarities between homophobia and ableism, the pros and cons of coming out with MS, and about how ultimatey, being accepted for who you are starts with accepting yourself.
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Ardra Shephard:
I'm Ardra Shephard and this is Tripping On Air, a place to talk shit about what it's like to have MS. Normally, I like to make everything about me, but MS also affects the people we love. So weighing in from the partner perspective is Alex Hajjar, my friend, whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS or you love someone who does, we want to connect with you. Years ago, my husband and I were out for some drinks with some of my colleagues, when the conversation turned to trading tales of low key medical trauma, like the time my high school boyfriend ice skated over my finger. You know, the horrifying stories of slamming your hand in a car door, stepping on a nail, or punching yourself in the face, as you attempt to take off your bra.
Not one to let a gross story go to waste, my husband started sharing his own cringe-worthy anecdote, well, our cringe-worthy anecdote, about the time we were in a Montreal hotel room and my MS medications auto-injector jammed. While my husband tried to solve the problem, the device suddenly sprang back to life, catapulting the syringe full of potent medication up into the air, before landing it dramatically in the center of his barefooted big toe. Of course, my husband never got to share the climax of this harrowing tale, because almost as soon as he started talking, he panicked and went pale, realizing he was outing my MS to my colleagues. His attempt to bail on the story only made things worse, as his sketchy plot holes made it sound more like a heroin experiment than however he thought he was spinning it. I should have redirected the conversation to outing his third nipple, but I respect boundaries and that's his story to tell.
Instead, I jumped in and confessed the truth, I have MS. Now, Alex is probably thinking, "Who doesn't know you have MS?" And I was open about my MS in the beginning, but I quickly learned that the world sometimes treated me differently because of it. Not always, but enough to make me wary. And for a long time, the pressure to prove my invisible illness, the dismay of being treated like damaged goods, and the fear of being left out or left behind led me to keep my MS classified. Today's episode is about the challenges of being out with MS and why so many trippers stay in the MS closet. To help us better understand this phenomena, our guest today is someone with multiple intersecting identities, including being public about his own MS. Juan Garrido is on the show. Alex, can you tell us a bit more about Juan?
Alex Hajjar:
Yeah. Juan Garrido is a pretty amazing human being. He dedicates his personal, professional, and academic life to helping others. Through storytelling and community building, Juan has been involved with the 2SLGBTQ+ and MS communities. As a social impact consultant and avid volunteer, he works with nonprofits and other organizations to ensure equity deserving groups are able to succeed and lead in their communities. As a graduate of York University and OCAD University, he studied how communities come together in the face of injustice and how to tap into joy while change-making. In his free time, he and his fiance like to explore local parks with their dog, Dora.
Ardra Shephard:
Juan, welcome to the show. It is so great to have you here. Can you tell us how long you've lived with MS? And were you always open about your diagnosis?
Juan Garrido:
Definitely. Thanks for having me on the show. Excited to chat with you. I've lived with MS now... I was diagnosed 11 years ago, so it was right at the beginning of my university career that I was diagnosed after having a few episodes here and there for a couple of years. And I wasn't open right away with it, and that was actually on consult from my neurologist at the time. When I was diagnosed, my neurologist said, "Don't tell too many people. This is going to make things harder for you in your job. This might make your life a little bit harder in some places. Just right now, you're healthy, your symptoms are under control. Just don't mention it to other people." And that was really hard. That was really isolating. I am a very kind of extroverted, friendly social person, and so, being told to not share this very important life-changing thing for me was really hard.
And as you know, with MS mostly affecting women, MS being more present or more evident as people age, when I looked online for things, it was a lot of images of people who didn't look like me. And so, truly, I thought for a while that, "Oh, I must be the youngest, queerest, brownest, most male person ever to be diagnosed with MS, and that's why I can't find anything and that's why I'm not supposed to talk about it." But once I did start, about maybe after a year, deciding, "No, I'm sad, because I can't talk about it. I'm sad that I'm not sharing with my loved ones. And I'm sad that I'm not trying to even find other people like me," that's when I really started to come into, I guess, my own identity as someone living with MS was once I was able to start talking about it and sharing my story a little bit.
Ardra Shephard:
I feel like there's so much to unpack here. Was there any truth in what your neurologist said? Obviously, the intentions were probably good, but it sounds like that maybe wasn't the advice you needed.
Juan Garrido:
Yeah, I think it was coming from a place where I've read the stories, both historically, in the recent past and in the present, of people with disabilities getting unfair treatment in employment opportunities, in workplaces not being accommodating to, especially with a condition like MS, where energy level changes day to day, ability changes day to day.
Alex Hajjar:
Of course, we don't want to oversimplify what coming out means for the queer community, nor do we want to downplay the impact of ableism on people with chronic illnesses like MS. But as a member of both the queer and MS communities, can you speak to how homophobia and ableism are similar, maybe the stigma or fear of professional repercussions, isolation, things like that?
Juan Garrido:
Yeah, I think they're similar in that these identities are, for some people, very different, very confusing, something they don't understand. With both the queer and MS communities, I always talk about it in terms of it's an ever expanding tent, where more and more identities, more and more expressions, of both disability and queerness, represent themselves and come to light and have more representation, that can throw people for a loop at times. And sometimes, unfortunately, that newness of an identity, that newness of an experience that they're learning about, comes out as fear, comes out as anger, comes out as feelings that it's wrong or that "Because I don't understand it, it must not be valid."
And so, with homophobia and ableism, oftentimes, the experience is my identity is not being validated right now. And because of that underlying assumption, where you think I'm faking my illness, my queerness, my gender identity, you're making it harder for me to get a job, for me to get services, for me to find community, for me to be open about what experiences I'm having, because you're starting from this underlying assumption that it's not real or it's not something that should be concerning or something that should be paid attention to or prioritized.
Ardra Shephard:
When I was diagnosed, I, of course, was keen to connect with other people in the MS community, but in terms of sharing that identity publicly, I didn't want my name and MS uttered in the same sentence. Before I needed mobility aids, it used to actually really feel kind of a messed up compliment when somebody I knew would say, "I sometimes forget that you even have MS." And I don't know if that's ever happened to you, but there was a point when I realized that "I forget you have MS" is only a compliment if I believe that MS is something that diminishes me. Can you talk, Juan, about the concept of passing in the queer community and how that might relate to what happens sometimes in MS, especially when it's in the invisible or non-apparent stages, and if that's something that you've ever experienced?
Juan Garrido:
Yeah, definitely. With passing, I'll get a little academic nerdy here, passing academically was first coined by a sociologist named Erving Goffman. And one of his whole theories was the all the world's a stage, we're all just actors playing a role, putting on these costumes, saying the lines that we're supposed to. And my undergraduate degree's in sociology and drama studies. So his theories are exactly what I wanted to study and experience of, how do we represent ourselves in the world? And his idea of passing was when a person was able to come off as part of a different social group than they are a part of, whether that's class, disability, race, gender. Within the queer community, passing comes from and is used most often in trans communities, and it's the idea of a transgender person being able to "pass" as not transgender or as assigned the sex that they now identify as at birth.
And so, that is a big debate within trans communities, outside of trans communities, of whether or not passing is the goal or not. For some people, it is, and oftentimes, that can be linked to safety, that can be linked to the idea of, "If I'm not being perceived as visibly transgender, then I am safer right now, then I can access the spaces that I need to access." We see that with the conversations around the world around access to bathrooms, access to community services targeted towards certain genders, but if you weren't assigned that gender at birth, can you still access a woman's space if you're a transgender woman? And for some people, passing isn't the goal.
It's about living your truth, and it's about expanding that idea of what being a woman is, of being able bodied is, of being a person with a disability looks like. Janet Mock, who's a writer about the trans experience, says that, with passing, the problem with thinking about passing is saying... It's again that underlying assumption that, "Oh, I'm faking it. I'm trying to deceive people," when I'm just trying to be myself. So with MS and my experience with MS, in terms of passing, over my 11 years, I haven't had a lot of very visible symptoms.
I don't currently use mobility aids. Even when I've had relapses, where it does become an issue, in terms of mobility or how I'm presenting, I've been able to not be in public spaces at that time. So that's been my experience. So for the vast majority of it, I haven't presented as someone with MS, except in how I talk about it and a lot of how I talk about the internal experiences I've had of, one, the more private symptoms that aren't as visible, but then, also, the fear, the stigma, the endless paperwork that comes along with having a disability in today's age. That's kind of where I experience things, but that's not always what people see right up front.
Ardra Shephard:
Tell me about it. Yeah, I think what was the damaging narrative for me was telling myself that I was passing for so-called normal, to use the word "normal" in place of healthy or somebody who didn't have MS. And so, it did feel like what I was being rewarded for, for passing as normal or healthy, was actually sending myself a pretty toxic message. And it can make things lonelier as well, I would say, when it's something to hide. Yeah.
Juan Garrido:
Yeah, I think it's expanding the idea of what living with a disability looks like, what living with MS looks like. Languages, language and shifting how I talk about myself, but I've come to start talking to myself as an able-bodied person living with a disability. Because currently, I'm able-bodied, but I still live with a disability, that is still disabling me in certain aspects and, one day, will change, in terms of how I'm able to navigate and move around the world and systems and spaces that I'm in. But just because I pass as able-bodied does not mean that I'm not being disabled currently, because I have MS.
Ardra Shephard:
Yeah, that makes sense. I think there's this idea that passing is something conscious all the time or a choice as well, and it's not always. It's sometimes just, I would say, how the world perceives anyone else and the judgements that they make about that. I think what I just want to highlight is, and I think I did, just the damage that we can do to ourselves when we feel like we can't actually be our authentic selves, but there are consequences also.
Alex Hajjar:
Yeah. I'd like to ask, I feel like there's a growing argument that the concept of coming out at all is antiquated, it's nobody's business, but on the other hand, coming out signals pride and identity and allows communities to advocate for better rights, access, and freedoms. Where do you land on this argument when it comes to MS, Juan?
Juan Garrido:
Yeah, I think labels and coming out are an intensely personal and individual thing. I think labels specifically can unite and can divide. It's the idea that you don't put me in a box because of what you're perceiving my experience to be. And at the same time, being able to use this label, being able to find that language, allows me to find other people using that or similar language and allows it to grow. With MS, I always say that everyone's MS is different is kind of the token phrase. And so, everyone's experience with how they're going to want to represent themselves and talk about their MS is going to be different as well. Like I said earlier, I'm very extroverted. I'm a storyteller. I like sharing a lot of my life. If you Google my name, there's going to be articles and videos where I talk about having MS, and that's one, because I feel comfortable doing that.
Two, that's my version of giving back to the community. And three, that's also a very personal way that I processed things. Like I said, that first year when I had it, after my diagnosis, when I didn't talk about it, that was the hardest year that I had MS for me, because I wasn't able to share that story. Once I was able to share the story with my loved ones and publicly, that's when I started to feel better myself, when I started to process a lot of the feelings of not having enough symptoms to be disabled or having too many symptoms to be able... I was able to start processing that in a public forum. But that's just my experience.
I would never tell everyone that, "Oh, as soon as you have MS, you have to go on a magazine article and do a nationwide campaign and start a podcast, do a TED Talk." If that's not what you want to do, I have friends, who have MS, who are more like, "I want to live my life. I'm glad I found you, and we'll talk about it one-on-one. I'm not ready to go up on stage at this event to talk about it, because that's not my journey." I said, "That's perfect and fine for you." But those labels allow for those individual micro connections. And I think that is more important, that then allows people to flourish in the way they want to, on that more public or macro scale.
Ardra Shephard:
That can definitely feel like one of the added burdens of this disease is like, "Oh, now it's your job to educate the world on what MS is." And we're definitely not here to say that. Juan, I just want to, before we move on from this question, I know Alex is dying to ask a question too, but you talked about that first year. Did you tell absolutely no one? Did you have anyone to talk to? Or were you just not public?
Juan Garrido:
I told my family, I had just started university, but I was living away from home for university, but my mom was there at the first few appointments with me. And I think I started to tell a few friends, but wasn't very public about it, didn't really tell many people, until I ended up having my first relapse post-diagnosis. That was quite a big one, where I had to share. I was like, "Hey, I'm not feeling great right now, and this is why. And now, I have a lot of feelings, because now, I have to tell you about it, in the midst of me feeling like absolute garbage and having every symptom known to man."
Ardra Shephard:
Well, you don't want anyone thinking that you're doing heroin, right?
Juan Garrido:
Yeah.
Ardra Shephard:
I think, sometimes, when we are vague about these things, it can lead people to imagine all kinds of other things that might be wrong.
Juan Garrido:
Exactly. And being able to contextualize like, "Hey, I'm having this symptom right now, and it's because I have MS, which I haven't told you about yet. It's cool, it's fine, but this is happening right now. And I just need your help getting down the stairs right now."
Ardra Shephard:
"I'm not drunk. I have MS."
Juan Garrido:
Exactly.
Ardra Shephard:
"Also, I'm a little drunk." Alex, what did you want to ask?
Alex Hajjar:
Honestly, this might be a total caveman kind of question, as I still feel like I live on the periphery a lot of the time of this, but was it more difficult for you to come out as a member of the gay community or is it more difficult to talk about having a disability and having MS? What is more difficult for you to express, I guess?
Juan Garrido:
The simple question or a simple answer is it was harder for me to come out as gay. There is a long history of both ableism and homophobia in our world that make it hard for both. In my experience, the added religious, political, cultural context of how people talk about queerness just made that harder. But at the same time, coming out with MS was easier for me, because I'd already done it as a gay man. And that's where these intersecting identities started to become really interesting of, the more I come out in who I am as a person, it gets easier, I learn how to do it more, I see how to do it in certain contexts and scenarios, where I was able to start using some of the practices and things that worked for me when I was coming out as queer, when I started coming out with MS.
And for example, like I said, coming out and being able to talk about it and find people like me, when I came out as queer in high school, I was one of the only queer people in my high school, so it was very isolating. And it was going online and finding other communities. It was starting to be more open and seeing that, "Oh, there are more people that are queer that I don't know." And so, as soon as I started talking about having MS, one, everyone in Canada, I feel, has a story of an aunt with MS, but I also started having other friends say, "Oh, I also have MS." Or a few months after, saying, "Hey, I also just got diagnosed. And can we talk about this? Because now we're going through this at the same time." So coming out with MS, really, I learned about that process through coming out as a queer man.
Ardra Shephard:
I love that you shared that, Juan. It sounds like you learned that there was great reward in being able to authentically be yourself. And you talked earlier about thinking MS does kind of seem like a white woman's disease, and if you're not a white woman, it's already an isolating lonely disease, and I imagine that makes it quite a bit lonelier. Being a minority within a minority, is that also part of what drives your activism and your desire for visibility, so that you can connect with or find those people and help them realize that all the different faces of MS? Can you speak to that a bit?
Juan Garrido:
Yes. When I was diagnosed with MS, I felt like I was the only one, and I felt intensely alone. Being an immigrant, from a racialized community, I didn't have the "I have an aunt with MS" story. I didn't know what it was. I had never heard of it. I automatically assumed the worst. And when I go online and just see images of middle aged to senior white women in wheelchairs, I thought, "Well, none of that is me. So what does that mean with my trajectory? How do I be an adult with MS? How do I be a man with MS? How do I be a young person with MS?" There wasn't a lot of that out there, and that was an extremely trying and emotionally hard time for me. And so, part of me being so public is saying, "Hey, you're not alone. You're not going to be the only whatever identity with MS." Whether it's just a person with MS, because there are people all the time being diagnosed with MS, who are middle-aged white women, who are probably like, "Oh, I'm the first one, and I don't know anybody with this."
So even if they can see my story, say, "Oh, there's great, there's another person with MS that I know about," or another man, another queer person, another 18 year old who's just starting university. It's like, "Well, am I allowed to have a career now? What does this mean?" And I can say, "Hey, I've found my career, and these are the steps I've taken and this is my personal journey." So it's being able to be public and helping diversify that experience, so that having MS is not a monolith. Being a queer person is not a monolithic experience. Being a immigrant is not a monolithic experience. It's everything that's being put together that's made my experience. And if there's a part of that that we can share in together, then I think that's great.
Ardra Shephard:
MS is so common. Canada has one of the highest rates in the world. That's where we are. What is it now? Between one in every three and 400 people. So there are a lot of people who are still not talking about the fact that they have MS, that still do not feel safe about sharing that information. So for anyone in the community, and the work you're doing, Juan, is so awesome, because not everyone has to be loud and visible, but to have those voices and connections and to be able to find those people is so therapeutic and so healing. And it's so, so very important.
Alex Hajjar:
And I really like that you're talking about community, because I think that's where people actually realize that they are part of something that's much bigger than them and it's much more diversified than they are on their own. And so, people can find their people, so to speak. But as you said earlier, coming out with MS is an ongoing process. It's not a one-time event. How do you actually decide when and with whom to share this information?
Juan Garrido:
Great question. And it's one that I am asking myself every day, honestly. And it's changed a lot over the 11 years, from being told not to tell anyone to deciding, "No, that's how I need to process things," and then, becoming very public, and I had a lot of really great opportunities and experiences through my networks and through some of the groups I was part of to share that story very publicly, to in the last few years, honestly, being a little less just public and little less very online than usual. And that's just, because I'm not at a stage right now where I am looking for maybe the public accolades. I think my career path has changed my thoughts of what I want to do and how I want to affect community has changed, but it's also not something I'm hiding anymore either. So it really is dependent, day to day.
I've been job hopping a little bit over the last few years during the pandemic, and there were some jobs where it never came up. And so, those are people that, especially a pandemic job, I never met them in person. I didn't share that much online. So whole swath of people that know me and knew me for months, talked to me every day, and didn't know about this huge part of me. And then, other jobs, like the one I'm at right now, where, within the first week, I was sharing some of the cool work in activism and public education work that I've done with MS, and that's because of the role I'm in, the environment I'm in.
And so, it was right up the front like, "Hey, I have MS. This is how it might impact my work." And negotiating that with my boss and saying, "Hey, I'm going to have a hundred percent day and the next day might be a 60% day and the next day might be a I'll work on Saturday instead of today day." And then, also, there's this other side of me that, because I have MS, I also have this intense passion and love for public education, for public awareness raising, for sharing my story online. So here's the full gamut of experience of what that looks like and how this changes the space I'm in right now.
Ardra Shephard:
Yeah, everyone knows I have MS. If you Google my name, it's MS. But if the Uber driver asks me, "What happened?" Or "What's wrong with you?" The answer is, "None of your effing business." It's I can decide that I am open and proudly disabled, but I still don't owe everyone an answer all the time. It's you get to decide over and over, and it can be exhausting. And sometimes, there are lots of days when you're just like, "I don't feel like educating anyone. And also, none of your beeswax."
Juan Garrido:
Yeah, and there's almost different levels of the coming out story on both ends, where sometimes, it's "I have MS, I have a decade's worth of experience about talking, writing, and educating people about it. I've been on national commercials, I've been in national campaigns." There's the "I have a doctor's appointment with a neurologist" version of the story, and there's the, "I'm not feeling great today" version of the story. So there's different levels, that changes who I'm talking to, why they're asking, what their intent is, what I'm willing to share, where I'm at, just emotionally and energy wise, that day, of some days, I don't want to have that whole story.
And at the same time, like I said, I'm never going to hide parts of it either at this point. I've been lucky and privileged and have designed and created a life for myself where I can be open, where that's just part and parcel of my career. I know that's not a blanket experience. I know that's not something that everyone has been afforded that privilege for and are in maybe more precarious job situations, are in a more... I live in Toronto, I live down the street from the MS research centers of the world, but that's not everyone's experience. So I would never presume to say my experience is the way to do it.
Alex Hajjar:
I wanted to touch on the sort of really supportive work that you're doing. So be honest, I creeped your social media a little bit, and you seem to read, as you are now, unapologetically yourself. And you spend time with Riot, the, I'll say, pawgressive pup, and supporting teachers, as you were talking about, and supporting the LGBT YouthLine. What advice do you have for people who want to walk the line between the human need to fit in, but also to be accepted for who we are?
Juan Garrido:
The way the question is phrased is I don't think it's a dichotomy. I don't think those are mutually exclusive. I think being who you are will help you find the space to fit in. It might take a little bit longer, and it might not be the traditional avenue to find that space. Obviously, the internet can be a cesspool of garbage, and it can also be this great unifying factor, that has changed our world for the better in a lot of different ways too, where queer people, people with invisible disabilities are able to find these communities online. I have been very privileged in the communities I've been a part of, in the way I've designed my life. I always say that Toronto's my favorite city in the world, as a queer person, who's an immigrant, in an interracial relationship, with a chronic illness like MS, there's no greater city for me to be in than Toronto. Because I have my pick of litter for a community for all of those intersecting identities.
But I know that there are millions of people around the world living with MS who are not in Toronto, and so, their experience is going to be different than mine, in terms of what they have access to, in terms of communities in their backyards, what their safety is, what resources they have. And so, I think part of that being accepted for who we are is also accepting who you are, each person individually, coming to terms with their own identities, in terms of their experience with disability, with queerness, with race, with gender, whatever it might be, with class.
And then, figuring out what is it that you need out of that experience of "I'm a queer person. I'm feeling alone. I'm going to go find other queer people in the safe way that I can do it. I live with MS and I'm feeling alone. I just need someone's advice of like, "Hey, how do I talk to my boss on the day that I can't see, but tomorrow, I'm going to be fine? How do I talk to somebody about that?"" It's coming to terms with your own identity and figuring out, what is it that you need, and in theory, that is impossible to find, even if it's not easy to find.
Ardra Shephard:
I love what you said, Juan, about fitting in by being who you are. I think that is awesome advice. We are running out of time, but what a great conversation. I would say that social media is that, yes, it's a garbage fire hellscape a lot of the time, but it is where, in the absence of those diverse and inclusive communities that we can find in Toronto, we can find them online. And thank goodness for that. We know what MS can do to the body, but the social costs and consequences of MS can be just as devastating. Disability is the largest minority group on the planet, and yet, we still haven't found safety in numbers. Just like who you love is nobody's business, when it comes to your health, you don't owe anyone an explanation. It's up to you to decide when sharing personal information is in your best interest. Juan, we want to thank you for being on the show. Where can we find you on social media?
Juan Garrido:
Yeah, on Instagram, I'm at Juan_LuisG, I believe I kind of oscillate between, am I a public persona? Am I sharing it by myself? So depending on the day you look me up, you might see cute pictures of my dog. It might be locked down. It's this ever expanding journey of how we live online as a people.
Ardra Shephard:
Great. Well, look for your content and activism. Thanks to our guest, Juan, for sharing your story here and on social media. And thanks for listening, trippers. We'd love to hear from you. Are you open about your MS or is MS your sick little secret? Leave us a comment. And if you liked this episode, please follow, like, forward, subscribe, all the things. Thank you. Thanks for listening to Tripping On Air. Don't forget to visit us at trippingonair.com.
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