T. Sydney Bergeron Mikus is an award-winning writer, artist, designer, model, and activist based in NYC. They live with TBD (tick borne disease), including Lyme, Bartonella, and ehrlichia, as well as POTS (postural orthostatic tachycardia syndrome). They create work driven by healing advocacy, art, and narrative as tools for change, and self-care as disruption. They are the founder and director of Simple Politicks, and co-host the Invisible Illnesses Support Circle at The Wing. They are also an inaugural member of the disability council at The Wing, advising on events, new spaces, and other accessibility topics. Sydney is a queer, nonbinary femme living with chronic illnesses that cause intersystem disabilities.
Key links mentioned in this episode:
Listen in as Sydney shares…
- how it took almost a decade for them to be diagnosed
- that tests for tick-borne disease can be very unreliable; and even inconclusive results can mean diseases and co-infections are present
- that sometimes symptoms are hard to pinpoint, especially if they are subtle and feel like “just part of being a person”
- that their mom also has Lyme
- that so many Lyme specialists do not take health insurance, which makes treatment restrictive
- that they waited until they were really sick to finally get treatment
- that they started treatment with holistic methods before starting intravenous treatment; they were supposed to get a PICC line, but discovered they were allergic to heparin (blood thinner), which is used to clear PICC lines in treatment
- that they are combining holistic and intravenous treatments now, and will soon start antibiotics again to combat TBD symptoms
- that they are now using therapies that track the frequencies of bacteria in their blood
- that the CDC does not recognize Bartonella as a TBD, but most Lyme organizations do
- that they have their cat, Lupin, registered as an emotional support animal – and he really helps with their mental health, as well as supporting when they have physical symptoms that crop up
- that many TBDs have overlapping symptoms, which makes them even harder to diagnose, treat, and be aware of in general
- that Lyme can cause POTS – not in all cases, but in some
- that water, salt, and beta blockers have been useful for their POTS symptoms
- that Ritalin has been helpful for brain fog
- that they were very close to a final diagnosis of Hashimoto’s at the time of recording, and this has now been confirmed
- that they didn’t identify as disabled for a long time – but they do now
- that they are their own advocate in most ways, having dived into research of their conditions independently – but that their mom has also been a great support
- that brain fog is incredibly frustrating
- their heroes in the invisible illness community, who have inspired them to be more open about living with disability and to become more empowered in that identity
- how they have channeled their experience into advocacy
- stories about accessibility, accommodation, inherent privilege, and disability awareness
Lauren: All right, guys, thank you so much for joining us today! I am here with a wonderful human, T. Sydney Bergeron Mikus, who I actually met through the ‘gram! They’re here to talk about a lot of things, but Sydney is an activist, and a writer, and lives with tick-borne illness: including Lyme, bartonella, ehrlichia, and POTS … as well as thyroid disease, which is looking like Hashimoto’s. So we’ll get into all this stuff. But Sydney, thanks for being with us today!
Sydney: Thank you for having me. I’m so excited to be doing this!
Lauren: Let’s get straight into it. Why don’t you tell us how you first found out you were living with these illnesses?
Sydney: Sure. I had a very long journey to get diagnosed with my various predicaments.
I first started getting tests done when I was in ninth grade, and I was diagnosed when I was in my fifth year of college, with no break in between.
Lauren: That’s a long time ago; that’s 10 years.
Sydney: It’s nine years. And it took a long time because every test was coming up negative or inconclusive.
And as you may or may not know, tests for tick-borne diseases are not very accurate, especially Lyme disease.
That’s the one that you care about the most, and the test is so unreliable. So I got all the various tests done, and everything was coming up inconclusive. So I just kind of ignored it, because we couldn’t figure out what was going on. And at that point, it wasn’t so bad that it was hugely interfering with my life. It was more of just a nuisance. And then there are also so many things that I did not realize were symptoms. I just thought they were part of being a person, and maybe I just wasn’t handling them as well as everyone else was. I kept getting tested periodically, just because I had what I now know are flare-ups. But at the time, I had no idea what was going on, and it kept coming back inconclusive. And then finally, I got very insistent about it and went to a specialist, because in my fifth year of college (I was in a five-year program) — in my fifth year of college, I just couldn’t get anything done anymore. My brain fog was terrible. I guess I was still getting stuff done, but not to the level I was used to.
And the worst symptom actually, I think, was from POTS. I would just get hugely dizzy and shaky and nauseous, and I would have to lie flat on the floor for about an hour before it started to feel better.
I hate throwing up more than anything … !
Sydney: Yes! I just straight up refuse to do it!
Lauren: I’ve been there!
Sydney: So that was the point where I was, like, I cannot deal with this anymore. I can’t be just lying down on the floor wherever I am. It was just way too much. And my mom actually also has tick-borne diseases. I know she has Lyme; I don’t know what other ones she has. And she actually doesn’t know, because she was diagnosed back when doctors weren’t really paying as much attention to the other ones. So, I’m sure it’s in her record somewhere, but she doesn’t know off the top of her head. And then also, of course, there the memory issues that come with it. So they may have told her, and she just forgot.
Lauren: That’s like the chronic invisible illness overlap – the brain fog. I feel like every single one of us has had that at some point.
Lauren: And it just really interferes with your everyday functionality, not only as a student but also at work and in all of your social interactions. I mean, it affects everything.
Sydney: Yes, absolutely. So she kept pushing me throughout this whole thing to go to a specialist.
And then when I got to that point where it was really bad, I finally took it more seriously and found this specialist to go to. I’d been so hesitant because, first of all, I didn’t know where to look. And secondly, most of them do not take insurance. So I knew it would be expensive.
I’m very financially privileged; but even so, didn’t feel comfortable doing that, when everything was so manageable. So I waited until things got really bad — which, of course, probably makes it harder to treat. But I also just didn’t really know any better. So that’s when I was finally diagnosed with my tick-borne diseases. And then around eight months later, I was diagnosed with POTS. I don’t remember when I was diagnosed with Hashimoto’s … I think I have the dates on my website just because people ask me so often.
Lauren: I’ll have to cross reference all of that. And we’re going to obviously link to your website on the episode page, and we’ll mention it again at the end where people can find you and your work. So what steps have you taken to control your health? You mentioned, obviously, finding specialists. But in terms of the treatments that you’re undergoing, what is that looking like for you?
Sydney: I started out doing intravenous treatment. Actually, I’ll backtrack a little bit … I started doing some supplements for a few months, and then intravenous treatments.
Lauren: When you say intravenous, do you mean antibiotics? Or do you mean ozone?
Sydney: So I was doing all holistic treatment.
My body does not like antibiotics. I know I need to do them, but my doctor wanted to try to combat it with holistic treatments first, to try to knock down the infection level some so I wouldn’t have to do quite as much.
And I was supposed to get a PICC line — which, for anyone who’s not familiar, is this tube that goes in your arm and up the vein to your heart to deposit medicine more directly. It turned out I could not get that because I’m allergic to heparin, which you use to flush the PICC line. I actually discovered that when I was getting a treatment where – basically, they draw some blood out and run it over ultraviolet light … ultraviolet blood irradiation is what it’s called. So basically, that’s supposed to kill off the bacteria that the light hits. When you’re doing that, though, you need the blood thinner.
Lauren: Which is what heparin is.
Sydney: Yes. So the first time, I was fine; the second time, I was fine. And the third time, I had a reaction.
Lauren: Oh, wow. Well, it’s lucky they caught it before they put the PICC line in.
Sydney: Yes, it is! So after that happened, we were all just: What do we do now? I haven’t had any more of that treatment obviously, because there’s really no safe way to do it. I guess I could use saline, but saline and PICC lines are tricky because you have to enter the spot more often to flush it with saline, for some reason. I don’t understand why; I don’t have a medical background. But for some reason. So that was the last time I did that type of treatment. I still did some more IV drips for a little while, and then I don’t remember why we stopped doing that, but my doctor switched me over to herbal supplements. One of them is garlic. I don’t know what the other two are. I know what they’re called, but I don’t know what they mean. They’re like an Eastern medicine.
Lauren: Okay, so now you’re doing that integrative treatment, and you’re continuing with supplementation.
Sydney: Yes. At some point, antibiotics again … if we can figure out how to do that. I think I mentioned my doctor doesn’t do totally Western practices. I guess that’s probably fairly obvious … to get the treatment I’m describing! So he does this check … I forget what it’s called … this is what most conversations with me are like!
Lauren: Well, you’re talking to the right crowd, so that’s the good news!
Sydney: Perfect! So anyway, he checks somehow the frequencies given off by different bacteria in your blood. They’re all different. I’m not sure exactly how that works. He’s explained it to me, in depth, multiple times. I have pamphlets on it. I don’t remember any of it.
Lauren: It’s very interesting. I haven’t heard about anything like that.
Sydney: Yeah, it’s something like the sound waves that my blood levels respond to. And it shows what my infection levels are.
Lauren: I know that with these tick-borne diseases, there’s often a thickening of the blood, and I wonder if that’s sort of affecting whatever, like, current he’s putting through, maybe. I’m just spitballing here, but it makes sense to me.
Sydney: It makes sense to me!
Lauren: I know we mentioned a bit about bartonella. Can you talk about how that all ties into your Lyme diagnosis? I know that there is some discussion about whether bartonella is, in fact, a tick-borne disease. Can you tell us a bit about that?
Sydney: The CDC says that bartonella is not a tick-borne disease. I guess I can’t make a blanket statement and say every one, but most of the research I’ve seen from people in the Lyme community and most nonprofits associated with Lyme research and tick-borne disease research do count it as one. So I’m not totally sure why CDC doesn’t.
Lauren: It’s an interesting one, because it seems to me – and my understanding of Lyme – that bartonella is absolutely a co-infection. But even the CDC guidelines for what constitutes Lyme, as well as how to treat Lyme, are not necessarily in line with what many Lyme-literate doctors are practicing. So it’s interesting you bring that up because that’s where the “controversy” applies. But then by the same token, when it comes to something like tick-borne disease, is the CDC where we’re going, or is it more to the Lyme community and these anecdotal cases?
Sydney: Absolutely. Yes, I know that you can get bartonella from other things. It’s also called Cat Scratch Fever. You can get it from cats! I’m guessing that’s why the CDC doesn’t count it, but I don’t know.
Lauren: And you do have a cat, too. This was one of the things we connected over! But it’s great because it seems like he’s been kind of a service animal, because when you’re having symptoms coming on, he sits on you?
Sydney: Yeah he does! It’s kind of amazing. So I actually have him as my emotional support animal.
Lauren: That’s amazing!
Sydney: He doesn’t have any training to be qualified as a service animal, because there is a difference between the two. But he is my emotional support animal. He helps so much with my mental health. And he also definitely knows when my physical symptoms are up, and he is always there to help out — which sometimes is not helpful at all, but he tries!
Lauren: Sometimes it’s getting in the way of getting things done! And what about the ehrlichia? Can you tell us a bit about what that is, and how it fits into the Lyme?
Sydney: I don’t actually know the differences for most of them.
And that’s part of what makes tick-borne diseases so tricky — a lot of them have very overlapping symptoms.
So I know there are certain things associated with the different infections, but I don’t know how you can tell which is which exactly.
Lauren: Okay. Interesting.
Sydney: It’s really tricky. I actually don’t know, off the top of my head, the hard and fast symptoms associated with ehrlichia specifically.
Lauren: Well, it’s interesting because from what I understand of it, there is, as you say, so much overlap with bartonella; that the two are very closely linked. But of course, this complicates not only diagnosis but also treatment, because of the levels of co-infections that you’re dealing with in terms of treating the Lyme.
Lauren: And then what about the POTS? How are you treating the POTS? Is that something where you just have to be more aware when standing up fast, or sitting down … things like that … and movement?
Sydney: Partly. My POTS treatment actually has helped me very substantially. So that’s fantastic. I used to get very shaky, very nauseous — all the time. Once that happened while I was driving, which was scary, because then I had to pull over and lie down in my car until it went away — which was not fine. That’s only happened once, which is great. And it has not happened again since I started treatment.
Lauren: And what does treatment consist of?
Sydney: I go to a specialist who deals with cardiology specifically, and she’s a pediatrician. So I was not sure she would see me because I am an adult. I’m 24. But I really lucked out and she agreed to see me based on me describing what was up, and also mentioning that I do have Lyme.
Because Lyme can cause POTS. It doesn’t always; sometimes POTS happens independently of Lyme.
But it can cause it. So she agreed to see me, and the first meeting was just a trial to see if I actually did have it. Because clearly if I didn’t have it, she wouldn’t have been able to help. Or if I didn’t have something else that she specializes in. But she diagnosed me with POTS, and I take various medications for it. I had to sit on the floor of the subway once because I almost passed out and there were no seats available. At that point, I wasn’t identifying as disabled and I didn’t know what was wrong yet, really. And I definitely didn’t know I had POTS. So it was odd, but that hasn’t happened since taking my meds, which is great.
Lauren: That’s really lucky. So it’s really managing the POTS symptoms.
Sydney: It really is. I take other medicine as well. I take a lot of salt. I drink a lot of water, which isn’t technically medicine, but I count it. I take a beta blocker to help with the tachycardia. And then I also take Ritalin sometimes, to help with the brain fog and depression. And energy.
Lauren: Oh, that’s really interesting. Wow. And has the Ritalin been useful with the brain fog?
Sydney: It’s been so useful. I can’t always power through it; sometimes the brain fog is too severe. I’m also on, I think, the lowest possible dose because … first, I’m just very small. And secondly, you don’t want to increase the tachycardia, which stimulants can do. So being on a really low dose makes it so that I don’t get more tachycardia, but I am able to focus better sometimes.
Lauren: So that’s really great. Usually you hear about Ritalin being prescribed for children, or for people who are diagnosed with ADHD. So it’s really interesting that it’s been prescribed to help you with the brain fog — and it makes complete sense. That’s exactly what it was designed for.
Sydney: Absolutely. I was so nervous about it, and so hesitant to take it because I’m already on so many different things. And you hear all these horror stories of people using Ritalin. It’s a controlled substance; I need a new prescription every month, I need to bring my ID to get it. So I was a little nervous. But I’ve done really well; it’s helped a lot. It doesn’t help with everything. Sometimes the brain fog is too severe. But it definitely has made things easier when it works; which is most of the time, I would say.
Lauren: I think that’s so cool.
Sydney: I never would have expected it either. It was a shock to me when she said we should try Ritalin.
Lauren: Yeah! Obviously I’m talking to people in the chronic invisible illness world all the time, and you’re the first person who’s mentioned it in relation to brain fog. And if it’s something that physically you can handle, as you’re saying, on the really low dose – it makes a ton of sense. And then also with the thyroid disease, are you still waiting on a final diagnosis of Hashimoto’s? Or do you know that you’re in the Hashimoto’s world? And welcome to the club, if so!
Sydney: Thank you! I think I have Hashimoto’s. That’s what my chart says on the health portal. But they also don’t have everything accurate up there. So I’m not sure. I think they decided on that, but I’ve actually only been to … what’s it called, the endocrinologist?
Lauren: Sure. Yeah.
Sydney: Okay. I’ve only been to the endocrinologist once because my family just had a billion health things happen this past year. The Hashimoto’s … it was hard to distinguish … but I didn’t feel like that was being a huge disruptor. I wanted to focus more on other things. And also to focus on all the other health stuff going on in my family.
Lauren: Yeah, absolutely. And that’s the interesting thing, too, when you have multiple illnesses and when you’re balancing work and life and illness — to be mindful enough to recognize when something is more severe or not. For me, Hashimoto’s had me out; but for you, the Lyme was more the priority. And the POTS has been more of a priority than the Hashimoto’s. I imagine if you’re not already on some kind of thyroid hormone therapy, that you will be shortly.
Sydney: Yes. I’m on levothyroxine.
Lauren: T4, fantastic!
Sydney: But I don’t know what it’s doing, because I haven’t been back yet.
Lauren: Right. Very early days then.
Sydney: Yes, very early days. I have another appointment scheduled, I think for June. So we’ll find out in a couple of months.
Lauren: Yeah, when they first give you the levothyroxine, they usually give it a few months to see if it’s settling your levels. I can tell you all about that! There’s a lot that goes into it, because a lot of people, particularly if they have the autoimmune concern, don’t necessarily respond just to the levothyroxine; they need liothyronine, which is T3, in order to absorb it. Kind of the way you need vitamin D to absorb calcium – the same kind of thing. But it sounds like, obviously, you’ve got a lot going on and your family has had a lot going on. And speaking of your family, I’m really interested to know, among your family and friends, at any point in this journey through your health if you found that you needed an advocate — and how that’s affected your relationships, as well?
Sydney: I’ve done a lot of the research myself. I’m not totally sure how or why; I guess just because everyone’s busy!
Lauren: And also, you’re very much an advocate — and we’re going to get into your advocacy.
Sydney: That’s true.
I don’t know how to not dive into research. It’s just like my go-to. So I’ve been my main advocate.
But my mom has been hugely, hugely helpful, coming to my appointments with me. She won’t let me go by myself to get intravenous treatment, especially since I had my reaction. And I also have a huge fear of needles. Which has gotten better over the years. When I was a really little, I think it took five people to give me a shot, because I would have to be totally restrained. I was horrified!
Lauren: And you’re tiny.
Sydney: But I was strong, and considering how sick I am and was, I’m amazed at how strong I was. But yeah, it took a lot of people to restrain me and give me my vaccines. But I’ve improved; I’ve gotten to the point where I can go and get a shot without bringing along an entourage!
Lauren: Well I should hope so, at this point, because it sounds like you’re getting stuck with the needle quite a lot.
Sydney: Indeed. It still freaks me out. So I always try to get someone to come with me, unless it’s just getting blood drawn. That doesn’t scare me as much because that’s just blood leaving my body. But whenever you’re adding something else to it — especially since I had my reaction — I’m not comfortable going without someone there, just in case. Because my doctor was not in the room when I had my reaction, because it took a second. He was with another patient — not far away, just down the hall. But still, it made me nervous. I’m scared to go by myself.
Lauren: And it’s enough to have an invisible illness and to be going through the process of trying to be seen. Which is another thing we’re going to get into, because you wrote a really interesting article about invisibility and its overlap with queerness; it’s a really cool article we’re going to link to. But between that struggle for visibility, and then having something happen and not having your practitioner in the room … that’s got to be really scary.
Sydney: Oh, yeah. Indeed.
Lauren: And in terms of your mom coming to appointments with you, has that made you guys closer? How has it affected your relationship with her?
Sydney: We’ve always been super, super close. So I’m very fortunate about that. Overall, it’s been really good. We have an interesting relationship with our conditions, because she … I just totally lost my train of thought … it’s going to come to me …
Lauren: About your mom also having tick-borne illness?
Sydney: Thank you.
That’s the part that frustrates me the most, by the way … [the brain fog].
We can get into that a bit more later. She always kind of hid it from me and from my brother when we were growing up, because she didn’t want us to worry, So hiding it has kind of made her not want to talk about it, I think. And also, she’s just so used to pushing through; that’s her instinct. Whereas I’m trying very hard to always listen to my symptoms. I might listen too much when I should push through, but it’s hard to know. And I also think that’s a generational thing.
People my generation are much more in tune, more into sharing, and more into taking the time when you’re sick. And advocating that your employer give you a break when you’re not feeling well, things like that … older generations didn’t have that luxury.
Lauren: Absolutely. And, you know, self-care has become such a colloquial term at this point. And that’s certainly generational, too … the idea of self-care. The concept of it is so different now, in the sense that it is even a concept, and that people talk about it on wellness blogs all the time, and in the news. That would never have been in the news even when I was a kid. As you say, generational. And I suppose it also is a reflection on the positions in the relationship, you know – with the parent not wanting the kid to have to take things on. But as a child, you’re more willing to let your parent take things on. That’s their job, too. Very interesting.
Sydney: But now that I’m an adult, and now that I’ve been diagnosed, she’s much more open with me when she’s not feeling well — which I’m so happy about.
I imagine that when I was little, I probably would have been terrified to know everything that was going on. And I still am; it’s scary stuff. But I’d rather she be honest with me, and she is now because she knows that I understand, because I have it.
Lauren: In a way, as you say, you guys were already close, but it also gives you common ground, as well. I’m wondering if you could just walk us through what a typical day is like for you? I’m sure there’s no such thing as “typical”, because symptoms manifest differently all the time. But I’m wondering what it’s like navigating your work and your life and your relationships, and dealing with your symptoms as they come on?
Sydney: Sure. So I try to always count out my pills every week. It doesn’t always happen. Sometimes I end up doing it morning-of; sometimes I don’t take all of them because my supplements make me feel worse — which means they’re working. But it’s not fun. So that’s one of the first things. Lots of water is key, especially for the POTS. I really feel it if I’m not hydrated. I also feel like when there’s the release of the toxins … I don’t know how much you know about tick-borne diseases?
Lauren: With the Herx.
Sydney: Yes, when you’re …
Herxing – that’s the die-off of the bacteria, for any listeners who don’t know. And that releases toxins into the body. And that’s what makes you feel so much worse. I feel better when I’m really, really hydrated when that happens.
Lauren: And then what about when you have demands for work, like deadlines to meet, and the brain fog hits? Or trying to meet friends for drinks, and having fatigue or having a physical symptom? How do you manage all of that, and communicate to people what you need?
Lauren: Which we’re going to get into!
Sydney: Yes! So she says that she believes in “seizure time” because she has epilepsy. And that just was mind-blowing to me, to acknowledge and factor in that … I need this time to dedicate to the condition of what I live with. And that’s been really, really helpful. I factor in that I need to have enough time to sleep eight hours every night. I need to have enough time to make sure I’m eating regularly. I need to have enough time to count out my pills. And then I try to build in extra time in case I have a flare-up and I need to just rest a lot.
That has been very, very helpful; just giving myself more time than I think I will need … something I still struggle with. Because I’ve always been an overachiever who wants to do way too much.
Lauren: It’s always us! It’s always these Type A personalities that this happens to!
Lauren: The irony is not lost on us!
Sydney: Absolutely not. So I’m still struggling with it.
But I’ve definitely come a long way. And I’ve also just re-evaluated what’s most important to get done.
Lauren: And one of the things things you mentioned earlier was that anecdote about sitting down on the train when there were no seats available, and how hard it was for you to identify as disabled. And I’d love for you to tell us a bit about the journey from not identifying as disabled to identifying as disabled — and how that’s changed your perception of the way you approach your illness, and has empowered you?
Sydney: So partly, I just didn’t know that I could.
The only imagery I’d really seen of disabled people was people who use wheelchairs. And that was about it. Other than that, I hadn’t heard the word “disabled” associated with any other type of person.
Lauren: Which I think is true for a lot of people.
Sydney: Yes. So just reading more about the conditions I have, and getting more involved in the community, is what taught me that I can refer to myself that way. One of the main things actually was Yolanda Hadid’s book, which has “disability” in the title. I hadn’t seen Lyme and disability paired together before that. And then reading Porochista Khakpour’s book, where she talks about using a cane — not because she needs it to support an injured limb or anything like that, but just because she gets fatigued and dizzy. That was the first time I realized, ‘Oh, I can use a cane and it’s okay.’ And then just talking with my parents about it. I wrote about this in my article.
My dad was hesitant about my use of “disabled” to describe myself at first, and he’s now come fully on board — which is fantastic, and he’s hugely, hugely supportive. He never didn’t want me to use it in a non-supportive way. It was more just out of concern because there’s a stigma associated with it. And you know, you don’t want to watch your kids go through being stigmatized.
Lauren: Sure. But it’s interesting … and what you do so artfully in this piece which you wrote for them. … is you place these two concepts beside each other so we can really see and understand the dichotomy of invisibility that goes along with how we self-identify. And, again, I’m going to link to this article on the episode page, but it’s an article about how your dad was more willing to accept that you were queer than that you had a Lyme diagnosis, right? When I saw just the headline of this piece, it blew my mind. I was, like, somebody’s writing about this … this is amazing! But it’s really interesting. The perception from outside, and then how that also affects our perception of ourselves.
Sydney: Yes, absolutely. That was a challenging write. And I’m sure a challenging read for a lot of people, too.
Lauren: Yes, I’m sure it is a challenging read for a lot of people. But for me, I was, like, yes! And it really ties into the advocacy work that you’re doing. You’re not just writing about your experiences and sharing them on social media for the public. You’ve also, as you said, co-founded the Invisible Illnesses Support [Circle] at The Wing, which is a co-working space, designed specifically for women, but it’s very open. And you’re doing that with your friend Aditi. So can you tell us a bit about that support group?
Sydney: Yeah. The Wing has just always been highly supportive of all the work that I do. And because of that, one of the events people reached out to me and said that they were interested in starting a support circle. And did I know anyone who would want to be in it. So immediately I texted Aditi.
Lauren: So you and Aditi ended up starting the support circle?
Sydney: Yeah! We did a test one first, just to see what the interest would be … if people actually cared to come. And a lot of people did.
Lauren: So it was a great connection that you made. Now you’re reaching out to the wider community who knows your work, as well. And through the writing that you’re doing. Because it’s not just this piece you’ve written for them., but you’ve also written for Nylon and Teen Vogue and a number of other publications that you’re contributing to. So that’s really exciting.
Sydney: Yeah, thank you! Just for clarity, I haven’t written for Teen Vogue. I’ve done a social media takeover for them. So I can’t take credit for writing for them, but I’d like to one day.
Lauren: Teen Vogue, you should definitely hire Sydney!
Sydney: Definitely. I agree!
Lauren: So here’s an interesting question, because we’ve talked a little bit about identity … and that journey to identifying as disabled. Can you give us an anecdote or two, where you may have had something happen where you’ve had to justify your illness to someone else, or be an educator and explain?
Sydney: Oh, absolutely. Very often, all the time.
Lauren: Is there anything that stands out for you in particular?
Sydney: Well, since we’re just talking about Teen Vogue, I went to the Teen Vogue Summit in New York last summer. Actually, I think I communicated with someone through my school, because The New School was partnering with them, and Teen Vogue used our campus as the location for the summit. So I got to go for free; I was awarded tickets through some social media competition thing. You basically just posted about why you wanted to go, and then they picked people. So anyway, I reached out to the person on The New School side to confirm that there’d be designated disability seating. And then when I got there, there wasn’t any. What I ended up doing was, I just sat in the press and guest seating because I needed to be near an exit, just in case. Sometimes, there’s too much stimulation and I need to leave and find a quiet dark area. I’m very light-sensitive, hence the sunglasses.
Lauren: You’re making it cool to be light-sensitive, that’s for sure!
Sydney: I figure if I have to do it, I might as well have fun.
Lauren: And do it in style. Very Coco Chanel of you!
Sydney: Indeed. So then someone came over and saw everyone else had their press badges and I just had my attendee badge, and they told me I couldn’t sit there. So I said, “Well, you don’t have disability seating; what am I supposed to do? Where can I go? Can you point me to the designated disability seating as promised?” And she let me stay. And The New School team then reached out to me to make sure that there would be set-up for the next day, and they had signs out. I don’t know if they did that for everyone, or just for the people who personally reached out and made contact with them.
Lauren: And it shows what an impact you had just asking for what you needed — which is such an important lesson for those of us in the invisible illness community. It’s a very steep learning curve, understanding that you’re allowed to ask for accommodations when you need them because you need to take care of yourself. And you have to be brave; you do have to be brave enough to also say, “By the way, I don’t look disabled, but I am.” Which, until you’ve come to terms with that identity – as we’ve discussed, it’s hard.
Sydney: It is, and I still struggle with it sometimes.
Asking for a seat is so hard for me. I still have such a hard time just asking people to let me sit when I need to.
Lauren: Why do you think that is? Do you think it’s because you’re judging yourself from outside and how people would perceive you?
Sydney: I think so. That’s part of it.
And I also don’t want to assume that anyone else isn’t disabled.
Lauren: Absolutely. That’s a really good point.
Sydney: Because you can’t tell, looking at me, that I am. So how am I able to tell who to pinpoint to talk to on the bus or the subway?
Lauren: Well, look for the man-spreader!
Sydney: Oh, I do! If I’m able, I always try to go to the white man and get him to give up his seat. That’s the easiest.
Lauren: So how important is it that we keep talking about what we can’t see? Is that going to be part of the cure? How do we keep being seen for who we really are?
Sydney: I think it’s super, super important.
But I also recognize that not everyone’s in a position where they can be open about what they’re living with or suffering from. It’s tricky. There’s so much discrimination for disabled people.
As I mentioned earlier, I have a really great safety net and a lot of privilege. I’m white, I come from a family with a fair amount of money. My dad pays for my treatment. I haven’t had to go into debt trying to get better, like so many other people have. So I’m much more able to talk about what’s wrong, and what needs to be fixed, than other people who maybe would risk losing their job if they said they’re disabled. Even though technically you’re not supposed to fire someone for being disabled. But stuff like that happens.
Lauren: Absolutely. I interviewed someone the other day who had that happen to them. So it does definitely happen.
Sydney: It’s hard. Not everyone can do it. So that’s what makes it so tricky … how do we make it so that people can be open?
Lauren: Yeah. And I think, using your platform, as you’re able to, is really important. And as you’re saying, to recognize your privilege, if you have privilege. And then to use it productively, which is creating platforms for other people and creating something like the Support Circle at The Wing, and being vocal about what’s going on. Because one thing that really drew me to you on social media was that you use Instagram Stories a lot, and in your Instagram Stories, you’re very honest about what’s going on with you on a day-to-day basis … what you’re thinking about, and really sharing very openly about your experience. And that’s very valuable, especially for people who might be going through something like a health crisis – like what you’ve been through, but may not have the resources. It gives them access to resources and the ability to find community and be able to learn to identify, in whatever way we need to.
I’ve had so many people reach out to me and say that they went and they got tested because they found a tick on themselves, and they wouldn’t have known to if they weren’t watching my Instagram. And that’s just so moving. The knowledge isn’t out there. It’s not talked about enough yet.
Lauren: Right. And something like Lyme, as well … where we’ve touched on how the CDC guidelines are different from the guidelines that an integrative or functional medicine practitioner might use to diagnose something like Lyme. Just being aware that there may be more than what we’re told by larger organizations. And that what you’re going through is real. Now, I like to wrap up my episodes with a few top three Lists. And I was wondering if you could give us your top three tips for someone who suspects they may have something off and may be entering the world of invisible disability, just like you, and me?
Sydney: So definitely, connecting to a community is my number one.
Lauren: And how do you recommend people do that?
Sydney: If you’re able to, I think in-person connections are the best. I love social media, of course; I’m always on it. But I still always prefer to talk to people in real life, or even like this where it’s one-on-one – but designated time with each other. And not while I’m looking at a screen while I’m doing other stuff. So much of my social media posting is done while I’m watching Netflix. So definitely, intentional time with the community. Finding people can be a bit of a challenge. In most cases, I found people through social media, so they do interact off each other, for sure.
Most of my experience with the disability community has come from social media, but then resulted in these in-person or one-on-one connections.
Lauren: Which can be very fruitful and comforting.
And very helpful for getting validation, especially because with some conditions, it’s very hard to get diagnosed. Not every doctor is well versed in everything. So it’s really helpful to have a group to go back to and say, “Here’s what’s happening with me,” and have people respond and say, “I believe you.”
Lauren: Oh, gosh, it’s huge, isn’t it? I believe you and I see you. And what would your other tips be? Two more!
Sydney: So this was for people who are …
Lauren: Entering the world of invisible disability, like we are.
Try not to judge yourself based on your productivity. So much easier said than done. Something I still struggle with, for sure. I think I probably will forever, because that’s just how our social structure operates, unfortunately. But that’s hugely important. If you’re sick and disabled, then you’re not going to be able to be as productive as a 100% enabled person. Especially once you factor in other ways of marginalization that you may have.
So definitely, try not to value yourself based on productivity.
Lauren: Particularly if you’re recovering Type A, like we are!
Sydney: Yes! So hard! And my third piece of advice … make sure you sleep enough. That’s part of why it took me so long to get diagnosed. I was getting four or five hours of sleep at night, and I felt that was fine. That was more than what my classmates were getting.
School has a terrible reputation of students not sleeping. It’s just awful.
Lauren: I think that’s college!
Sydney: And unfortunately, a lot of the professors encourage it, too. it’s part of what took me so long to realize that something was wrong. I thought I was just fatigued because I wasn’t sleeping. And then I studied abroad, and was sleeping enough every night. And I was still extremely fatigued. And that’s when I realized something was wrong. You can’t tell unless you’re taking care of yourself. Again, not everyone can afford to do so. Some people are working three or four jobs, and not able to sleep because they have to keep working to live.
Lauren: But if there are ways that you can find to make that time more sacred …
Lauren: I’m sure you’ve had to make some lifestyle adjustments to manage your symptoms, aside from medications and accommodating treatments. But I’m wondering if you ever cheat on any of your treatment or lifestyle changes, or have guilty pleasures or comfort activities when you have a flare-up? If you’ve got three things you do to cheat or make yourself happy, what would those be?
Sydney: Okay, so I definitely sometimes will go off my supplements. I don’t go off any of my prescription meds. Because none of those really cause any negative feelings for me. But I definitely will go off them sometimes. Especially the garlic; garlic makes me feel really nauseous sometimes. And as we’ve established … !
Lauren: Not a fan! Although that could also be part of the Herxing, or the die-off, right? But yeah, I know that sometimes you just want to have a day where you don’t feel nauseous.
Sydney: Yeah, so I just I give myself a break. Sometimes I eat foods that I shouldn’t — and by that, I mean foods that are inflammatory. I’m very, very dedicated to not eating gluten, because I’ve noticed that gluten makes me feel awful. But that was easier to cut out, especially because there are so many gluten-free alternatives that still taste good.
Lauren: And you live in New York City, where you have access. And not just at the grocery store, but also at restaurants.
Sydney: Yes. So I’m very fortunate about that. But I do sometimes eat things that are really high in sugar or have a lot of dairy or are really spicy. And those are all things that make me more inflamed, or make me more fatigued. Honestly, it’s never worth it. But I still do it. Because the craving … sometimes, it’s just too strong and I think, oh, it’ll be fine- and then it’s not.
Lauren: I usually just use my period as an excuse! (laughs)
Sydney: I do too!
Lauren: My body told me I needed a donut! (laughs)
Sydney: And then I instantly regret it because I feel so sick.
Lauren: And it’s like, you might as well have had the garlic.
Sydney: Right? At least I’d have known it was doing something to help me get better, potentially. Whereas, eating all that chocolate is not helping! It just tastes good.
Lauren: It tastes good, and look – if it’s super, super dark chocolate …
Sydney: Thats what I try to do.
Lauren: And there are so many vegan, dark chocolate options now, too, where you can get stuff where there’s no added dairy. Some of them are really good!
Sydney: If I’m going to eat things that I shouldn’t, then I try to get the lowest dairy, lowest sugar possible. But sometimes, I just fully ignore it.
Lauren: Sometimes you just gotta go to Ben & Jerry’s!
Sydney: I’m not strong enough to not [go sometimes].
Lauren: And that’s okay. I think that’s part of accepting the fact that this is all a human experience. And really, cutting ourselves some slack. It’s so key to this experience. You said earlier about not judging ourselves for our productivity. It’s also about just not judging ourselves if … that’s the thing we really want right now, we’re going to have it. You know, I need that lie-in. Whatever it is that you’re feeling guilty about, if there are ways to remove that judgment for yourself …
Sydney: I don’t think I judge myself for it so much as I think: Why did I do that? But it feels so nice in the moment. But after an hour, it hits me — and it’s not so nice any more.
Lauren: It’s like a one-night stand with dairy! (laughs) Fine for a moment, sometimes.
Sydney: And it’s okay or even wonderful for some people. But not for me!
Lauren: Any other guilty pleasures or comfort activities?
Sydney: So, definitely hanging out with my cat. No guilt associated with that, whatsoever. He’s the best. He’s so much fun. He’s always causing trouble. He’s always making me laugh. And you know, he makes me take time for myself. Unless I have something I absolutely have to get to, if he sits on my lap, I won’t move until he does.
Lauren: I think there’s a post at least once a day where Lupin is just getting in the way and you’re, like, ‘Oh, well! I live here now.’
Sydney: That happens all the time. And sometimes it’s because he’s just decided he’s going to sleep inside my backpack.
Lauren: I saw that. That was really cute.
Sydney: I can’t make him move! He forces me to slow down and take time to just relax and not be running all over the place.
Lauren: And this is where the importance of an emotional support animal can really be useful for people who are in this.
Sydney: And he also helps me make sure I sleep enough because before before I had him, I would be staying at school all night doing work. And when I got my cat, I was, like, actually, I think I’ll go home and hang out with my cat and sleep. And it was a big game-changer.
Lauren: That’s gorgeous. Well, Sydney, is there anything else that you’d like to share with us?
Sydney: I’m sure there are things, but we’ve covered so much.
Lauren: I’m really excited to post links to some of your work — in writing, and to your advocacy work … because you’re also doing political advocacy, which overlaps with the disability advocacy … with Simple Politicks (with a CK). So we’ll link to everything that you’re doing so that everyone can find you. And guys, if you’re not following Sydney already on Instagram, they’re @taysydberg. Definitely follow along and watch everything that Sydney is up to, and keep following updates. And I’m looking forward to getting more updates about what happens with your thyroid.
Sydney: I’ll keep you posted.
Lauren: And happy to talk you through any of it if it ends up being Hashimoto’s, because, boy, do I know about all that!
Lauren: And as I say, every time I interview someone on the show, I end up making them my friends. So you’re stuck with me now!
Sydney: Love that.
Lauren: I love it, too. And it is just such a pleasure to have had you on the show. Thank you so much for joining us today.
Sydney: Thank you. It was fun. And I’ll look forward to talking.