Ep 70: Syren Nagakyrie

Ep 70: Syren Nagakyrie

Syren Nagakyrie (she/they) is the founder of Disabled Hikers, a community and resource for those living with disabilities (and their loved ones) that enables and empowers them to access nature. An activist for accessibility and inclusion, they come from a working-class background and have struggled to retain adequate healthcare for most of their life. Syren lives with multiple invisible conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS), dysautonomia (postural orthostatic tachycardia syndrome, or POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — all of which cause them to live in chronic pain. They also live with clinical depression and complex PTSD. The Disabled Hiker’s Guide to Western Washington and Oregon: Outdoor Adventures Accessible by Car, Wheelchair, and Foot is being published by Falcon Guides in 2021. Go here to support Syren’s fundraiser ahead of publication.

Key links mentioned in this episode:

Disabled Hikers

National Park Service

Creaky Knees Guides on Amazon

Syren’s Guidebook Fundraiser

Tune in as Syren shares:

  • that their illnesses are in various stages of diagnosis because of the state of healthcare here in the US
  • that when they’ve been insured, they have usually been on a form of Medicaid, which has rarely been adequate (they’ve never been able to access private medical care)
  • that they are only able to work part-time, and manages life on a limited income
  • that their father was also disabled
  • how they rose to the challenge of self-advocacy as an adult
  • that a lot of adaptive gear is inaccessible because of its high price point
  • that a lot of people learn about adaptive gear through disabled athletes — but we don’t all have to perform at that level
  • that so many of us need more than a paved path and/or adaptive gear to make it into the great outdoors — and these accessibility needs should to be acknowledged
  • how they have enacted direct change through the National Park Service
  • what information could make the outdoors more accessible
  • how they’d like to see healthcare in the US change
  • why disability “inspiration porn” rubs them the wrong way
  • how important it is to ask for help, especially when living with chronic illness

This episode is sponsored by Embr Labs, creators of the Embr Wave.

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Every purchase you make using the above link supports Uninvisible’s ongoing mission, at no additional cost to you.

Lauren: All right, guys. Thank you so much for joining us again. I am here today with Syren Nagakyrie, who is the founder of Disabled Hikers. And we actually connected through Instagram, like I have with so many of my guests, which is such a treat. Syren lives with a number of invisible illnesses, including hypermobile Ehlers-Danlos, dysautonomia, ME or chronic fatigue, and a few other things. Because as we were saying before, she’s just so lucky! She’s just hit the jackpot with her diagnoses! (laughs) So, Syren, thank you so much for joining us, and welcome to the show!

Syren: Yeah, thanks for having me.

Lauren: Oh, it’s a total pleasure. So why don’t we start from the very beginning, the real basics. Why don’t you tell us how you first realized that you had something going on with your body that was different from people who aren’t disabled?

Syren: I was about four years old. One of my parents was trying to get me up from a chair, and my elbow dislocated. That was kind of an immediate concern, something was going on. And of course, at that point, CPS got involved for a little while, and I was in hospital and it was this whole chaotic thing. And then I started going to the Shriners Hospital where I grew up, and they started diagnosing me and working me up for different things.

At the time, and this was over 30 years ago, they said I had ‘loose ligament syndrome’.

Lauren: Interesting. I’ve never even heard that diagnosis! It sounds like a fancy name for Ehlers-Danlos.

Syren: Yeah, before they wanted to really say the name, I guess.

Lauren: Well, it’s taken a long time for that diagnosis and for the many different kinds of Ehlers-Danlos that are out there to be acknowledged. And we’re still in the process of acknowledging all the other different kinds that exist, aren’t we.

Syren: Yeah, absolutely.

Lauren: Okay, so that was with your Ehlers-Danlos. You got this ‘loose ligament syndrome’ diagnosis when you were a little kid. What about your other diagnoses?

Syren: Yeah, my various illnesses are in various stages of diagnosis, of course, because it’s so hard to get a diagnosis in this country. My dysautonomia is very likely POTS — postural orthostatic tachycardia syndrome. That I started really having issues with about 10 years ago. I had a positive Tilt-Table Test, and all that … and then they just kind of sent me on my way and said, “Okay, yeah, that’s that.”

Lauren: Like, we’ll just kind of keep an eye on your heart, kind of thing? Wow. So have you actually gotten the POTS diagnosis, or have you just been waiting all this time?

Syren:…

I’ve basically been waiting for the official diagnosis.

Lauren: So you’re just continuing to see various specialists and seeking diagnosis, essentially?

Syren: Basically, yeah.

Lauren: And with the Ehlers-Danlos as well, have you had a doctor actually sit down and say to you, “This is Ehlers-Danlos.”

Syren:  I’m in the process of getting worked up again now. I’ve never had consistent health insurance throughout my entire life.

Lauren: Which makes it hard to tell people that you require continuity of care, right?

Syren: Right. Absolutely. When I’ve had health insurance, it was usually some form of Medicaid. Which is seldom adequate.

Lauren: Well, I was going to ask you about that actually. In terms of Medicaid, do you think that being on a form of health care like Medicaid has made it harder for you to get the diagnosis, made the process slower than you think it might have been for somebody who was paying privately into a PPO or something like that?

Syren: It’s kind of hard for me to say because I’ve never really had the experience of having private health care, except for a few months at a time. But I do feel like the process is much slower when you’re dealing with Medicaid. 

Lauren: It seems like, my experience of speaking to different people who are in different stages of diagnosis and with different kinds of health care, it seems like there’s red tape, no matter how you cut it. But it is more difficult to demand continuity of care, especially if you’re having to change your health insurance and things like that. And that makes it the hardest, because then you’re having to start your story all over again from zero with someone new all the time. And that seems like it’s been your experience, from what you’re telling us.

Syren: Yeah, definitely.

Lauren: Also tell us about your other diagnoses. ME/chronic fatigue … Is that something that you’ve had diagnosed by a specialist, too? Because I know that one is so hard to pin down as well. You’ve got all these illnesses that are the hardest to pin down and to get a doctor to admit to, or say that someone has. How has that looked for you in terms of diagnosis?

Syren: That one’s in process, too. Recently, I brought the diagnostic checklist to my physician and said, “Hey, look, I check every single one of these boxes.

Can we just get something on paper here so I can start sorting this out?”

So yeah, we’re in the process of dealing with that, too.

Lauren: Great. And what else is on your plate in terms of the diagnosis list?

Syren: Well, I have clinical depression and complex PTSD. And I had really severe asthma as a child; it’s a little better now, I can manage it on my own. But that definitely flares up sometimes.

Lauren: So you’re still dealing with all of that. And this is the other thing with clinical depression. And I’m sure even with triggering your PTSD. Every one of us who’s a Spoonie who lives in this invisible illness world with everything you have to go through … with doctors, with your lifestyle, with work — just with living — causes further depression. But it doesn’t change the fact that there may already be pre-existing clinical conditions there. So how have you taken control of your health with all of these nebulous diagnoses and probably, I imagine, nebulous treatments as well? What steps have you taken to control your health?

Syren: One of the biggest things I’ve done is, I no longer work full-time. I was trying to continue work for a long time, and I was just constantly sick, always fatigued, just really kind of generally in an awful state. So I don’t work full-time anymore. And I freelance on my own, very part-time, and I’m in a situation where I can manage on a very limited income. So that’s been a huge help.

Lauren: Have you mindfully put yourself in that situation where you’re able to live on a limited income as well, like that’s been a very conscious choice?

Syren: Well, no, it wasn’t conscious at first. I just kind of wound up in that position.

And then I said, you know, I’m gonna make the best out of this.

Lauren: And have you ever pursued any kind of disability for what you’ve got going on, too?

Syren: I’ve thought about it. I’m not sure if I want to take that step yet. 

Lauren: Right. That’s a hard one too, and I’m sure this is an element of what you’re struggling with — the idea of having the moniker of disabled, that identity, right. It’s hard to come to terms with, when we feel like … well, this is my normal. Does that make me disabled? Do I have to live in that identity? And is that going to then change the way that I approach every aspect of my life? Is that something that you’ve been grappling with at the same time, while you consider doing something like that?

Syren: I used to, for a long time, especially growing up as a sick kid and being constantly teased and bullied and all of that stuff for being sick and injured all the time.

I really struggled with identifying as disabled.

But over the last few years that has really shifted for me. Now I really identify as a disabled person. And finding community in that has been really helpful.

Lauren: That’s the thing, isn’t it … I don’t want to say it’s a double-edged sword. But it’s wonderful and horrible in equal measure as we navigate our identities in this invisible illness world, isn’t it. But the idea that we can then find community when we accept certain parts of our identity. And this isn’t just limited to our physical abilities. It has ramifications across the spectrum of identity. The idea that you can then take part in this community more freely, and really accept yourself and accept others in that circle can be very freeing. Have you found that for yourself as well? You’ve started your own community, which we’re going to talk about. We’re going to talk about Disabled Hikers; we’re getting there! But have you found that there was a freedom in that community when you finally found people who you could meet at the same level?

Syren: Absolutely.

Lauren: And that’s so much of the work that you’re doing. 

Syren: Absolutely.

Lauren: So do you think that you found along the way on this journey to help, especially because you were showing signs of illness from a very, very young age, that you needed a personal advocate at any point? Or have you grown to become your own advocate? What has it been like, with your parents, with loved ones?

Syren: I think for sure…

I needed a personal advocate. I can’t say I feel like I ever really had one.

Growing up with my parents, bless them … they did the best they could. But my mom worked full-time; my father was disabled. So there just wasn’t a lot of capacity there to really advocate for me. So that was definitely something that I missed in my childhood. But kind of set me up as an adult to really be able to advocate for myself. I really took on a lot of responsibility. So I feel like now my journey is to kind of go back and say no, it’s okay to ask for help. It’s okay to ask someone to help advocate, to help me through this process. That’s something I’ve started doing more with my friends, to say, “Hey, can you look into this for me? Can you make these phone calls? Can you look up these resources for me?”

Lauren:  Well, this is an interesting question then. Because you and I are both people who’ve created communities, right. And a lot of it has come out of our own experience. Do you think that creating the community that you have with Disabled Hikers has actually helped you with that reaching out to loved ones and that self-advocating? Aside from the fact that taking strength and advice from the people around you, and your community, as it were, that it’s also given you more of a firm sense of identity and made you feel more confident in your asks of others?

Syren:  Definitely, yeah. I don’t like to be a hypocrite, so I want to practice what I preach. If I’m telling people, “Hey, it’s okay to ask for help” … then I need to be doing that, too.

Lauren: So, tell me what a typical day looks like for you. I know every time I ask this question, there’s no typical in a lot of our lives! But as you’re managing your symptoms on a daily basis, because a huge part of what you do is getting outside, what are you being mindful of, and what are the extra considerations that you’re making in your daily life?

Syren: Well, I live alone in a really rural area. It’s pretty remote. So there’s not a whole lot of external things happening. So usually I get up and tend to my morning, get-ready stuff. And then too often, I get online and I start working — and before I know it, half the day is gone.

Lauren: I don’t think that’s solely an invisible illness kind of situation! I feel you.

Syren: Yeah! So I think the hardest thing for me is just balancing all the things that I need to do to take care of myself, the house, my pet, all of those things. Do the work that I’m driven to do.

And take time to enjoy the outdoors. While managing my illness.

Lauren: Tell us about this passion for the outdoors. How did this begin, and how have you woven it into your work?

Syren: Growing up, like I said, I was a pretty sick kid. And we were pretty poor, so I wasn’t able to really do your typical outdoor recreation activities. But I really loved to just spend time in my yard and look at the birds and the bugs and the flowers, and things like that. And I feel like that really instilled an appreciation for nature in me from a really young age. And then as I got older and I came to understand my illness more, I became interested in other methods of healing. So I started exploring herbal medicine, and I went to a clinical herbal medicine program. That really allowed me the time and the space to very slowly come to interact with nature and be outdoors.

Lauren: And I’m sure has also given you a lot of alternative holistic treatments that you’re able to use for various symptoms of your ailments?

Syren: Yeah, for sure.

Lauren: So it sounds like nature is your freedom and peace and escape, and you’ve woven it into the work that you do. Aside from the fact that the work that you do is about advocacy and getting outside and communing with nature as a disabled person, have you ever been confronted and forced to justify the fact that you have illness that’s not visible to others? And how does that experience look or manifest?

Syren: For sure. Definitely in doing this work, some people have asked me, “Hey, you don’t really look disabled. Are you just one of those non-disabled people who are trying to benefit off the disability community by doing this work?”

And I’m, like, “No, I’m, really disabled. I’m pretty damn sick!”

Lauren: These are trolls and stuff?

Syren: Yeah, trolls, people in general. Who maybe are meeting me for the first time, and I happen to look relatively good that day. And they don’t really understand what it is I’m doing.

Lauren: Yeah, those subtleties are often lost on a lot of people aren’t they. I hear people say, especially women saying, “Oh, you know, I’m wearing makeup that one day that someone sees me, and they think I look healthy and fine. But wait till I get home and I take my face off and see how tired I really am!” Because the fatigue and the depression are two of the most common side-effects or symptoms of so many of these illnesses. And the depression causes more fatigue, and the fatigue is so different from just being tired. It’s a bone tiredness. And you’re also dealing with pain, chronic pain. So managing all of that all the time, it’s so much work. And you do have to put on a face with people. But what you’re really doing with Disabled Hikers is removing that mask. So tell us about why you decided to start Disabled Hikers, and what it’s about and what it means to you.

Syren: Like I was saying earlier, nature and the outdoors has always been very important to me. And I feel like people who are sick and disabled can be really isolated in our culture.

And for me, having a way to connect with place and to connect with nature has given me kind of a home to always return to.

I’m always able to feel like I belong somewhere if I’m able to connect and enjoy the outdoors. In whatever way that looks. Sometimes it’s just looking out my bedroom window. Sometimes it’s going for a hike; sometimes it’s sitting in the park. So encouraging that for other disabled people has been really important to me, and saying, “Hey, we have this picture of outdoor recreation to be the super gung ho hiker who’s summiting a mountain peak every weekend. But that’s not what it has to be.”

Lauren: So in terms of the way that you’re adjusting hikes and adjusting different walks, are you using adaptive equipment and choosing specific routes so that you’re not triggering certain symptoms? Are you always mindful of that in the choices that you’re making outdoors?

Syren: Yeah, I’m definitely always mindful of that. And for myself, I choose hikes depending on how I’m feeling that day, and the level of risk I’m wanting to take. I acknowledge that with my disabilities, being outdoors, I always run the risk of an injury. I could slip and dislocate something pretty easily. So I take that into consideration, but I’m also not going to let it stop me from doing this thing that I really love. So I have to weigh all of that when I’m planning a hike for myself. 

Lauren:  And what about adaptive gear and stuff like that? Do you find there are certain companies that are really good at creating adaptive gear? Do you rely on it a lot? Do you find that your community is responding to that aspect of it as well?

Syren: Yeah, for myself, I primarily use trekking poles. They’re a really big help. I haven’t experimented with too much adaptive gear myself, because it’s pretty expensive and it’s pretty inaccessible. So that’s definitely something that I advocate for. I feel like in the outdoors in particular, the primary representation that disabled people get is through adaptive athletes. Which is amazing and incredible and totally valid and valuable. But at the same time, it leaves out a whole lot of people who maybe can’t access that equipment or maybe don’t need that exact equipment, but still want to enjoy the outdoors.

Lauren: And I feel like with athletes, what we see most is either the Special Olympics, where you’re seeing very visible things like amputees or people in wheelchairs. But then there is a whole subset, as you’re saying, of those of us who are in this disability community who don’t necessarily always need mobility aids or different kinds of prosthetics and things like that. And it makes it harder for other people to take us a little more seriously as well in that respect, doesn’t it.

Syren: It does, yeah. Yeah.

And then the conversation about accessibility in the outdoors kind of begins and ends at adaptive equipment and paved paths.

And there’s so many of us who need more than that to be able to access the outdoors.

Lauren: And in terms of the trolls and the critics that you’re coming across, aside from the fact that you have people saying, “Well, you don’t look sick” … what’s the most common criticism when you’re out there and you’re getting people commenting on the work that you’re doing?

Syren: A big one I get is, various comments around, “Oh, do you just want us to pave the wilderness over so that people who use wheelchairs can get into the back country?”

Lauren: Which is such a limited perspective. That’s not what anyone’s asking!

Syren: That’s not what I want at all.

Lauren: Isn’t it funny because you think of people who are in the hiking and nature communities as being more open-minded. At least I always would have. But even that’s a generalization, isn’t it? There are definitely people who just don’t get nuance, no matter how you slice it! So, we’re talking about accessibility here … it sounds like you’re going into a lot of national parks and local parks … in what ways do you think that they’re working for people who have disabilities? In what ways, aside from paving all the wilderness, do you think that organizations like the National Park Service, which I know are already limited in their jurisdiction and their funding, can they do to make the outdoors more accessible to people?

Syren: There’s lots of little things that can happen. Just as one example, Olympic National Park is the National Park where I am. There’s a long road that was washed out a few years ago. It goes along the river, it’s really beautiful. But it’s closed. So the National Parks put up a gate around it with an opening that was only wide enough for people who are on foot to walk around. So I pointed out to them, “Hey, you know, access could really be improved if you widened this gap a little bit to allow people who use wheelchairs and walkers to be able to pass through.” And they did.

Lauren: Oh, how wonderful!

Syren: Yeah, and there’s already people using it. So there’s lots of simple things like that. I would love to see more informational signs at the start of every trail that gave things like elevation and slope and material of the trail — so that you had that information right there.

Lauren: Yeah, that would make it a lot easier to decide. I know there’s a lot of guidebooks and stuff too, that are out there. And you’ve written a lot of guides yourself, haven’t you?

Syren: I have.

Unfortunately, there are no guides out there that are specifically for disabled hikers.

There’s one wheelchair book that was written like 20 years ago. And there’s The Creaky Knees Guide books, but they’re not really geared for disabled people. So really, there’s nothing out there right now, which is one of the reasons why I write trail guides and why I invite trail guides from the community. I’m working on a guide book now, so hopefully that’ll happen. 

Lauren: That’s all material that can be found on your website. And we’ll tell people where to find you at the end, of course, but it’s really great because you’re making this also very easily accessible. As long as you’ve got the Internet, people can find this information. So, we’ve talked about ways in which the park services can improve a little bit. What about stuff that they’re doing that’s working? Is there accessibility stuff aside from making those minor changes, as you’re suggesting? And they’re taking on your notes. But are there things that they’re doing that are already helpful for people as well?

Syren: Many of the parks do have accessibility information up on their website. Sometimes it can be hard to find, and it’s not very thorough, but there is something there.

I have found many of the visitor centers are pretty helpful in helping people find hikes and locations.

Lauren: That’s really great. And talking about the terrain and the elevation, as you say, which are probably two of the most important things for people to know — aside from the general access and whether you can bring a walker or a chair or any other kind of mobility aid with you. We’ve talked about national parks and how the outdoors can be improved and ways in which it’s working as well. What about our health care system? We’ve talked a little bit about this in the beginning of the interview. Are there ways that you’ve experienced our healthcare system really working? And what ways does it really need to improve from your perspective as well?

Syren: Let’s see … that’s always a can of worms, isn’t it!

Lauren: It’s such a can of worms. But what fascinates me is that it always takes everyone I ask “what’s working” … it takes longer to figure out what’s working than what’s not working. That’s partially because we’re solution-oriented people, right. So we’re, like, “Hey, here are my issues. Here’s what you need to do to fix it” — because we’re always on the phone with our health insurance companies trying to fix it. But the fact that it takes so long for us to figure out what’s going right is so telling, as well. And I know that there are some things that are going right. It just doesn’t mean that the whole system is going right. And that we find our heroes in the system. Have you found doctors you’ve had great relationships with? Have you had experiences where someone was more willing to understand you as a patient or take on a diagnosis or treatment plan?

Syren: Yeah, one of my care providers right now, she’s a registered nurse, and she’s great. She’s the first provider I’ve had in a long time who has really listened to me and was, like, “Okay, well, let’s figure this out,” rather than just dismissing me right away. So it’s great to have her. On the other side, she’s super busy and she’s not the only provider that I can see. So, I don’t always get the same quality of care elsewhere.

Lauren: And what do you think about improvements? If you had the platform to just say: This is the thing we need to change today about the health care system … what would it be for you?

Syren: Universal health care, and more coordinated care.

Which I realize that can be a slippery slope, sometimes.

Lauren: Tell us what you mean by coordinated care.

Syren: Making it easier for providers to communicate with each other and form a team around patients, rather than the patients having to jump from here to there to here, and fighting to get records and trying to communicate among all these disparate people and specialists.

Lauren: I think that’s a really good point. And in terms of universal health care, do you think it’s that we all need to get out and vote? That the thing that’s gonna really make that change is us participating in the political system and choosing representatives who are in favor of the kind of changes that we believe in?

Syren: I think for the universal health care option, that’s what it’s gonna take. Advocating and communicating with political leaders, and things like that. I also would like to see more community-based care forming in our individual communities, more care networks to make sure everyone’s having their needs met. 

Lauren: So, more local clinics, and it sounds like that’s also like opening the door to community within the clinic and letting people meet each other, too. So it’s community care, not just from the doctor’s perspective, but also as patients. I think that’s a lovely idea. And what about media representation? Because you’re someone who’s a very specific representation of disability in the media. What are your thoughts about the way people with disabilities are portrayed in the media?

Syren: I have a lot of feelings about it. Every time I see some kind of article or photoshoot or whatever that is just pure inspiration for it, I want to burn the Internet down.

Lauren: So you mean inspirational quotes and stuff? I apologize for half of my Instagram feed right now!

Syren: No, I mean, I think inspirational quotes when they’re designed by and for the community, that’s one thing. But inspiration porn is more using someone who is disabled as this inspiring figurehead. Look at this thing that this disabled person is doing. Aren’t they so inspiring because they’re able to do this.

Whereas really, if it was a non-disabled person, it wouldn’t be a story at all.

Lauren: Well, that’s able-ism in action, isn’t it. So okay, let’s talk about privilege. Since we’re talking about media representations. Can you talk to us about the role that privilege or lack thereof has played in your health journey. You mentioned that you grew up with not a lot of access to resources, that your mom was working, your dad’s also disabled, and that you’re not sure about going on disability yourself at this point. Tell us how privilege has played a role in your life, or lack thereof?

Syren: I’m a white person and I identify as queer, but I have identified/been perceived as female for the majority of my life. I no longer really identify as female … more leaning towards non-binary.

Lauren: Your current pronouns are she/her. But is that something you’re thinking of changing as well?

Syren: My current pronouns are actually ‘she’ and ‘they’.

Lauren: You’re right. Sorry. She/they. It’s both.

Syren: It’s both. I prefer ‘they’. Like I said, I grew up really poor, and I’ve basically been poor my entire adult life. So all those intersecting things have really been interesting in my life.

Lauren: Well, there’s invisibility that intersects with all of those identities. 

Syren: Absolutely.

Lauren: If anything, I’d say, at this point, the privilege would be that you’re a white person. But being that you’re a white person who grew up poor, that kind of changes the story a little for you, doesn’t it.

Syren: A little, yeah. There’s definitely experiences and things that I’ve been able to access, where, if I had been, say, a black poor person, it would have been that much more difficult for me. Or I wouldn’t have been able to access at all.

I definitely feel like there are times I’m taken more seriously because I am white and because I’m able to communicate in a certain way.

I’m able to talk their language, if you will. And that definitely gets me access in ways that you wouldn’t be able to otherwise.

Lauren: I think that’s a really fair point to make. It’s also amazing to me to hear … usually the people who acknowledge privilege are the people who’ve had the least. And I find that fascinating, because the role that privilege plays is that it itself is invisible, if you have it. There’s like a total lack of acknowledgement among people who have that kind of privilege, that they have that privilege. That’s sort of a dawning consciousness factor, I think, with a lot of people. But the more we talk about it, the more they’ll wake up to it, right? So, do you think that you’ve actually experienced undue judgment or prejudice in the healthcare system specifically, simply because you identify as female and you live with these various illnesses?

Syren: For sure, yeah. I have definitely experienced the “Oh, it’s just anxiety,” or, “Oh, it’s just your period,” or, “Oh, it’s just your weight.” 

Lauren: This is the laundry list of things that make me mad! Because that’s constantly what it is, isn’t it. This is gaslighting. This is what gaslighting looks like, guys. If you go to the doctor and they tell you, “Oh, it’s just your period” … “Oh, it’s anxiety” … and tell you that your symptoms don’t exist, that’s the definition of gaslighting. So is this something that you’ve experienced a lot, do you think? And is it something that you experience more now than in the past? Is it shifting a little for you as you learn to self-advocate more and engage more with your community to empower yourself?

Syren: I definitely still experience it pretty frequently. But now … I don’t always … but I’m more likely now to speak up for myself. Recently, I had an experience with a specialist who said, “Oh, did you Google your symptoms? What’s Ehlers- Danlos Syndrome? Did you Google it?” 

Lauren: Oh, that’s good. So they didn’t even know what it was anyway, so they asked if you Googled it so that they could get a definition?

Syren: And then he said, “Well, you probably don’t have that.”

And I thought … two minutes ago, you didn’t even know what it was!

Lauren: But it’s a really fair point, isn’t it. This is a combination of bedside manner and education needing to be sort of a circle that’s not complete in the medical system. But that’s not to say that there aren’t great providers out there, like your primary care doctor right now, who you were saying really sees you as a whole person, too. So, let’s talk about some Top Three lists because you know I like to wrap these interviews up with those. What do you think your top three tips would be for someone who thinks maybe they’ve got something off, or maybe are on the cusp of entering this world of invisibility that we live in. What would be your advice to these people, your top three pieces of advice?

Syren: Find community. do your own research, and practice advocating for yourself. And sometimes that can be even just starting with your friends.

But it’s a skill that we have to develop.

Lauren: And it’s one we have to continually be students of, I think. Because, even as you’ve said, getting better about telling our friends and loved ones when we need help. Sometimes we even second guess ourselves. So it’s good to, as you say, put it into practice and put it into action. I love those. Those are really good and they’re really practical as well. And they’re very much a reflection of what your work in Disabled Hikers is. Why don’t you tell everyone a little bit about disabled hikers, too. Just tell us a little more about why it exists and what the community means to you?

Syren: So I started it in March 2018. We do a few different things. I always say ‘we’; I’m the only person running it, doing it.

Lauren: (laughs) You’re a collective “we’.

Syren: Yes. The grand ‘we’. We do a few things. I lead group hikes throughout primarily Western Washington and Western Oregon right now, but I’m looking at expanding. I write trail guides and invite trail guides from people anywhere in the country. And it can be from their favorite trail, their favorite park, their favorite place to hang out … whatever it is. I provide the kind of information that disabled people need in a trail guide, to be able to know whether a trail is going to be appropriate for them or not.

I do a lot of advocacy and I do a lot of community building — encouraging people to share their stories.

Lauren: And where can everyone find you?

Syren: I’m on the web at DisabledHikers.com, and I’m on Instagram and Facebook @disabledhikers.

Lauren: That’s great. And one more question for you. I have a feeling I know what at least one answer to this will be. It’s what we were just talking about. What are the top three things in your life that give you unbridled joy, that you’re not willing to compromise? Even if they might put your body in a little of an unsafe position — whether it’s a guilty pleasure, a secret indulgence, a comfort activity when you have a flare-up? What are your top three favorite things that you always turn to?

Syren: The outdoors, obviously!

Lauren: I knew that was gonna be the first on the list!

Syren: I have a spiritual practice. So I always try to turn to that. It also is often the first thing to go when I feel bad. 

Lauren: That’s very interesting, isn’t it. That’s what happens to me with meditation, which is, I guess, my form of spiritual practice, too. It’s always the first thing to go, but it’s the thing that I’m, like, I need to be doing that thing. It’s hard. It’s hard to keep that balance all the time.

Syren: It is. It’s exhausting, in and of itself.

Lauren: Okay, your spiritual practice, the outdoors. What else?

Syren: Time with my dog. 

Lauren: Which I’m sure also extends into nature in a lot of aspects, too.

Syren: Definitely.

Lauren: What would you say to people who are like me.  I’m not really a hiker. I don’t like sweating. I’ll go on a walk! But that’s about it. What do you say to people like us who maybe don’t necessarily have that proclivity for throwing on sneakers and going outside. In terms of finding appreciation for nature, what’s your advice?

Syren: Just find a place that is close by, that maybe even you go to regularly or pass by regularly — and just start spending time there.

Just breathe, and notice what’s around you, and find something that brings you joy and is beautiful. 

Lauren: It’s about slowing down a bit, isn’t it.

Syren: Yeah, slowing down, noticing things, just learning to appreciate our own role in nature. That’s one of the things I love about nature the most is that there are lots of things that maybe look ugly or look broken, or like they don’t belong in nature. But actually, they’re really crucial to the ecosystem.

Lauren: Well, that’s so true and such a metaphor for so much of what we’ve talked about today. We have to take the good with the bad, don’t we. I’m not a terribly outdoorsy person, but you’re absolutely right. When I’m sitting in a park, when I’m sitting in nature, it does give you time to pause. And in a way also … I don’t know if you have this experience … but it makes me a little more aware of my body too, because I’m creating space.

Syren: Yeah, definitely.

Lauren: Well, it’s been an absolute pleasure having you here today. I’m really excited about the work you’re doing on Disabled Hikers, and you guys should all check out Syren’s work and follow along. Thank you so much for connecting with me and for having this talk today.

Syren: Yeah, it was good to talk with you!

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