Art, Advocacy, Representation and Acceptance: Tyra Grove’s Rheumatoid Arthritis Story

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Summary:

On Episode 106 of the Arthritis Life Podcast, Cheryl and Tyra delve into Tyra’s unique journey as a Black woman living with rheumatoid arthritis (RA) and her inspiring efforts to create a documentary film about her experiences. Tyra, an actress and filmmaker, shared how her struggle with RA led her to embark on the documentary project. She discussed the challenges of living with chronic pain, the lack of representation for people of color with RA in media, and the need to make creative spaces more accessible.

Tyra emphasizes the importance of re-parenting oneself and adopting a compassionate attitude toward one’s body when dealing with chronic illness. She also touches on the significance of finding joy in love, laughter, and supportive communities despite the pain. Cheryl and Tyra discussed the complexities of living with RA, including the physical and emotional challenges, and the importance of representation and empathy in media. 

Episode at a glance:

• How Chronic Pain Affects Daily Life: Tyra shares her personal experiences of living with rheumatoid arthritis (RA) and the challenges it poses in her daily life, including managing pain and seeking treatment.
• Representation, Race and Diversity: The conversation highlights the importance of diverse representation, particularly in media, and how the majority of representation for people with RA is often limited to a specific demographic (white women). Tyra’s documentary aims to address this lack of diversity.
• Documentary Making: Tyra discusses her journey into documentary filmmaking and the process of creating a documentary that focuses on her life with chronic pain. She touches on the challenges and goals of this project.
• Accessibility and Accommodation: The conversation delves into the need for making spaces and opportunities accessible for individuals with chronic pain and disabilities, especially within the arts and entertainment industry.
• Self-Compassion and Self-Care: Tyra emphasizes the importance of self-compassion and re-parenting one’s relationship with their body when dealing with chronic illness, as well as the role of self-care in managing symptoms.
• Supportive Communities: The role of supportive communities and friends in coping with chronic pain is highlighted, as Tyra acknowledges the importance of having a “village” of people who understand and assist her.
• Media Representation and Perception: The impact of media representation on public perception and understanding of chronic illness is discussed, emphasizing the need for accurate and diverse portrayals in media.
• Cherishing Moments of Normalcy: Both Cheryl and Tyra touch on the significance of appreciating the small moments of normalcy, like being able to take a pain-free walk, as well as finding joy in life despite the challenges.
• Empowerment: Tyra’s story demonstrates her journey towards empowerment in managing her chronic illness and advocating for herself, as well as inspiring others in similar situations.
• Artistic Expression: The conversation underscores the role of artistic expression as a means of coping and self-expression for individuals like Tyra, who use art to navigate their experiences with chronic pain.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Tyra Grove is a 25 year old multidisciplinary actress and filmmaker that is based in Chicago, Illinois. She graduated from The Theatre School at DePaul University with a BFA in Acting and is signed with Stewart Talent Agency. She was diagnosed with Rheumatoid Arthritis in 2021, following more than of decade of chronic pain and constant searching for a diagnosis. Her journey has led her to become an advocate for accessibility, awareness, and media representation for individuals with disabilities and chronic illness. She is currently directing an autobiographical documentary, titled My Name is Tyra, a loving self portrait of her debilitating health struggles and her fight to make life livable while being trapped in a vicious cycle of health crises, financial insecurity, and medical racism.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

• Links to things mentioned in episode or additional listening
  • Documentary Website: mynameistyra.com 
  • Documentary Instagram: @mynameistyradoc
  • Rheumatoid factor diagnosis fact v myth: https://arthritis.theenthusiasticlife.com/2021/04/29/how-is-rheumatoid-arthritis-diagnosed-myth-versus-fact/ 
• Speaker links
  •  All Documentary Links (Linktree): 
  • Tyra’s Personal Instagram: @___vxcc
• Cheryl’s Arthritis Life Pages:

• Arthritis Life website 
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Full Episode Transcript:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Tyra Grove)

Cheryl:  00:00

I’m so happy to have Tyra Grove on the Arthritis Live podcast. Welcome!

Tyra:  00:04

Thank you. I’m so excited to be here.

Cheryl:  00:07

Oh, I’m so glad. And can you just let the audience know a little bit about you, like where you live, and what is your relationship to arthritis?

Tyra:  00:15

So, I live in Chicago, Illinois, and I was diagnosed with rheumatoid arthritis in 2021. But I’ve had pain ever since I was about, like, 12. And I recently just got diagnosed with fibromyalgia as well. 

Cheryl:  00:30

Oh, yeah. And how old are you now, if you don’t mind sharing? 

Tyra:  00:33

I’m 25. 

Cheryl:  00:34

Yeah, so that’s a long time to be in pain from when you were 12 to when you got diagnosed. Can you share a little bit — it’s always hard to walk down some of these literally painful memories — but can you share a little bit about, like, when you first remember feeling pain, and kind of walk us through your diagnosis journey/saga?

Tyra:  00:57

Yeah. I started off in dance when I was younger. So, I started, I started with gymnastics, actually, when I was about, I think, seven. And I kept getting injured. And they thought it was because I was too tall. And I, a lot of the people that were in my class were shorter than me, and I would hit a growth spurt. And they thought it was because I was too tall. And that gymnastic just wasn’t good for my body, and then maybe I should stop. So, I focused on dance. I did both of them at the same time. But then, I stopped gymnastics completely and kind of like threw myself into dance and wanted to be a dancer when I got older. And it was the same thing. I kept having injuries; I kept being in pain all the time. And, you know, we kind of wrote it off as it’s just the dancer’s life, or, you know, no pain, no gain. And about when I was like 12, I randomly had a severe amount of pain in both of my knees. And I couldn’t walk, like, I couldn’t do anything. And it seemed like it was out of nowhere. And I had to stay home from school. And I was like, I was trying to get around my house in my mom’s office chair and rolling around.

Cheryl:  02:17

Did you have any systemic symptoms at the time, like fatigue or fevers, out of curiosity? 

Tyra:  02:24

No. I think fatigue, but I didn’t know that that’s what it was. I kind of just, yeah, I didn’t know why these things were happening. I thought, okay, maybe it’s because I played outside all day, or maybe because I did all this, like, dance stuff. And I kind of just wrote those things off. And also, just because I was a dancer, and kind of just the culture in dance is ‘push through’. And so, whenever I felt anything, I would ignore it and push through it. So, even if there were systemic things happening to me, I think I was kind of just ignoring them, until it got to the point where I couldn’t ignore them anymore.

Cheryl:  03:03

Yeah, that completely makes sense. It’s such a familiar story is so many people who get rheumatoid arthritis specifically are like, very active, you know, initially. And then, when they first experience pain, the most, you know, normal to you explanation that pain is injury. I kept saying, “I must have sprained my finger,” like sometimes you’re just falling around and not noticed. And then, you know, because I just was like, no thought in my head was anything to do with the systemic, like, autoimmune condition, you know? So, yeah, so you had some good support from your family, it sounds like, kind of like helping you get around the house with the chair? Or —

Tyra:  03:43

That was me, like, I was just grabbing things to like, push me along. So, that was me. But my mom is actually a Doctor of Physical Therapy. So, that has been —

Cheryl:  03:56

Oh, that’s amazing that your mom is a Doctor of Physical Therapy. Yeah. ‘Cause she kind of understands how complex the human body is, right.

Tyra:  04:05

And yeah, so she taught me a lot about pain management, and also just like, just the anatomy, just ways of treating myself. Just I know that if my mom wasn’t who she was, and knows what she knows, I don’t think I would be able to manage as well as I am able to, and especially whenever I have, like, extreme flares, I kind of know what to do immediately because of all the stuff she’s taught me. And it’s interesting because even though she does know all of these things, and she does know how to treat pain, and she does know how to like, you know, strengthen muscles and all of these other things and medical things, she doesn’t, she still doesn’t fully understand, you know what I mean? So, it’s like, still that layer of disconnection, you know. It’s like — it is like something separate, like, she understands it in a way, but not always.

Cheryl:  05:04

Yeah. And that’s common, I think. I was trained as an occupational therapist. And I think both physical therapists and occupational therapists are trained to really be experts in the management and treatment of like acute pain conditions, you know, like injuries and rehabilitation where you’re going to be, you’re at your baseline, your prior level of function; you get injured, and then your goal is to get back to that prior level, right. But with chronic conditions, that’s not the case. And we do get some training in it. But the heart, the meat and potatoes of our training, is in the cases where you’re kind of getting back to that previous level, or close to it. So, yeah, it’s a totally different mindset.

Tyra:  05:45

Yeah. And in the amount of physical therapists that I’ve cycled through, because they didn’t understand that, and also, because some of them were before I got diagnosed, so I had this cyclical thing happen where I was doing good, doing good, making progress, and then all of a sudden, like, my progress was completely halted. Or there’s a period where I just kept having pain. And these therapists that I’ve had either thought I wasn’t doing my exercise is, or I wasn’t actually sticking to the program, or they just gave up on me. And they felt like it was helpless and their time was being wasted, you know, or they got frustrated and overwhelmed with like the amount of things that were happening to me.

Cheryl:  06:25

That’s a hard, such a hard place. Because yeah, it’s like, why blame the patient, you know? You’re doing the best that you can. I think it’s, yeah, it’s definitely something a bit toxic, I would say, in our field, you know, the whole field of medicine sometimes tends to, you know, I would say, instead of confronting the fact that maybe sometimes people can do everything right and still have pain. It’s like, that’s the elephant in the room, right? 

Tyra:  06:51

Right. Right, right. 

Cheryl:  06:53

And a provider that understands that it’s like worth their weight in gold, because others are like, well, you must be doing something wrong. Or like Dr. House, “All patients lie.” It’s like, no, no, no.

Tyra:  07:03

Right. And it’s like, the fact that something has to be wrong with you, or like, your pain is a sign that you’re doing something wrong, I feel like it’s just so unhealthy just to put on people and for people to feel. Because whenever I’ve had, or have setbacks, there’s this element of shame that I have to work through every single time. And I feel like people who experience chronic pain, we don’t need to have that. We don’t need to have that shame. But I don’t know, I always get confronted with all the time.

Cheryl:  07:36

Yeah, and I think, you know, this is a weird way to look at it, but this happens a lot in my Rheum to THRIVE support programs, where there’s this double-edged side of thinking that everything’s under your control, because if it’s under your control, then that gives you hope that you could do something about it. But if it’s under your control, then that means a flare up is your fault. So, yeah, so in order, but then so then in order to acknowledge that the flare up wasn’t your fault, you have to realize that there are things out of your control. And that’s really scary for people, right? So, it’s hard.

Tyra:  08:17

And then, there’s so many things in physical therapy that I know, and I hold close to my heart, and I try to practice every day. And I recently switched to a new physical therapist, because a woman that I had wasn’t helping. And she was kind of doing the work of reminding me of those things. And I remember leaving and feeling so mad at myself, because I’m like, why did I let this one thing go? Why didn’t I stop doing this? And why haven’t I been doing this one thing every day? And it’s like, it’s okay. Like, if you’re dealing with all of these different things, and trying to live life and deal with pain all the time, it’s like, of course, you’re gonna let some things go sometimes. And like, I don’t have to feel shame and guilt because I’m not being the perfect patient, or the perfect pain manager, like, it’s just…

Cheryl:  09:06

Yeah, self — I mean, what I’m hearing you say is like, self-compassion, you know, like, and, you know, the reason people don’t do their exercises is because they’re human. Like, we’re not robots, you know, and that’s normal. It’s normal to be human. And exercises that are, are, you know, given to you that aren’t relevant or meaningful to you are much less likely to be done. So, yeah, I mean, I think there’s so much, so much complexity to it. But I was gonna ask, before I forget, so you got treatment for like, the pain, but no one really knew the underlying cause was like an autoimmune process. How did you eventually get to that diagnosis in 2021 of rheumatoid arthritis?

Tyra:  09:52

Okay. So, I kept going to so many different doctors, like, just so many, so many. And I would go through a process of finding a doctor, they would tell me that this thing was wrong with me, it was a wrong diagnosis, then they would find out, you know, try to do a plan of care, it wouldn’t work for me. And then, a lot of them ended up ghosting me, or just, like, their office wouldn’t take my calls, they wouldn’t take my calls, they wouldn’t write back to me, they wouldn’t answer my emails. And so, then I would, you know, be left to try to find another person to care for me. And a lot of the things that I got confronted with, because I started off with dance. And I’m an actress, and I’m very active. So, and I was young at the time. I was, you know, between I started searching for a diagnosis between the ages of, I think, 17, up until when I got diagnosed. And so, I was always confronted with, “Okay, you’re really flexible, you’re really strong, and you’re young. So, maybe it’s like tendinitis, or maybe it’s like, something simple,” like, there’s no way it’s something bigger happening with you, like, you’re healthy. And so, you know, I was just being thrown everywhere, trying to get X-rays, MRI’s. 

And it was just — so finally, finally, after I got a few, like, procedures to fix a diagnosis that I didn’t even have, I went to this doctor. And I remember he came into the room. And he looked at my X-rays, and he looked at me and I had on my wrist braces because my hands were really flared. I was in a wheelchair. And I was, it was — I was at the point where my mom really had to do everything for me. Like, physically, I couldn’t do anything. I couldn’t wash, like, my own dish, I couldn’t really bring my spoon to my mouth. I couldn’t — like, she would carry me to the bathroom. And when I showered, she put me on, like, the shower floor. And I would go from there. And I couldn’t even wash myself with my hands. So, I was, you know, in so much, so much pain. And that’s where I was and that’s how I was functioning. But in front of this doctor, he immediately looked at me as if everything that I was doing was a lie. And she was like, “You’re young, you don’t have arthritis. These MRI’s don’t show arthritis. If something’s wrong with you, maybe it’s systemic, but it’s not arthritis. I don’t know what it is. You’re gonna have to like go to Duke or something to find out what is actually wrong with you, but it’s no form of arthritis.” 

So, I went back and I told my mom this and I was just so insanely confused. So, then, my primary care retested me for the RA factor. I think first time I got it, I think it was negative. But when we did it again, it was positive. So, then, when she — then she referred me to a rheumatologist. And then, after seeing him twice, the second time, he told me that I have RA. And then, I started different medications, which was a whole ‘nother journey.

Cheryl:  13:13

That’s, yeah, it’s like the diagnosis journey, and there’s the treatment journey. But, you know, it is important for people listening who maybe are not diagnosed yet, or are in the process of trying to find a diagnosis, to know that, you know, only 40% of people are — 40% to 70% of people, they say, are positive for rheumatoid factor at their diagnosis. So, you can be negative for it at one point in time, and then as your disease progresses, you seem like you’re more and more likely to become positive for it. So, it’s really a shame how often people are said, told, you know, “Well, you can’t have rheumatoid arthritis because your rheumatoid factor is negative.” That’s totally not right. It’s a diagnosis of exclusion. So, they look at your personal medical history, family medical history, physical exam of your joints, your subjective report of your symptoms — when is it worse, in the morning, is it worse after activity, it it the small joints or the big joints, is it bilateral — and they look at bloodwork and imaging. And all of those things have to be looked at, not just bloodwork.

Tyra:  14:22

Exactly. And also, like I said, because my mom taught me how to treat myself. So, I do this treatment for myself morning and night, and especially when I was in extreme pain, I was doing it around the clock because I, you know, it wasn’t livable to not treat my pain all the time. And so, whenever doctors would examine my joints and things, I had already iced so much that my swelling had gone down. So, they’re immediately like, “Oh, okay, it’s not puffy. So, your disease is inactive,” or it’s like these little markers that don’t really actually come affirm or deny what is going on in my body. We have to test everything before you just rule it out.

Cheryl:  15:05

Yeah, that — yeah, that’s so interesting. I know that there’s definitely different philosophies about how to present at your appointment. Because the worst thing is when you go to the appointment, and you’re like, I’m actually having one of these rare, like, good days. And then, they’re like, “Oh, well, you’re doing, you look fine.” Yeah. And it’s such a, yeah, I mean, what did it feel to finally get that explanation? Was it like a mixed bag of like, relief that there’s a name for it? But, you know, it’s a serious diagnosis? Or, you know, can you walk us through the emotional response a little bit?

Tyra:  15:46

It was a very mixed, mixed bag of emotions, that I still process daily. First off, because, like I said, a lot of things go back to my mom being a physical therapist. So, she’s had experience with patients with RA. And I’ve seen her patients with RA. And a lot of them have been older, and also their disease progressed in a time where medicine wasn’t as advanced as it is now. So, I was really seeing examples of RA that were very scary to me and very scary for my mom. And so, she, there was like my mom’s reaction and hearing her reaction. And then, my own reaction, which is a separate thing. And my family’s reaction, which — [laughs] so, when I found out, I was really excited, I was really excited to know what was happening to me. And I was like, now I can actually get a plan of care based off of an actual diagnosis that I have, rather than all the plans of care that I had that were based off of misdiagnosis. So, I was really excited about that. 

But I was really emotionally impacted by the fact that RA doesn’t have a cure, you know what I mean? So, for the rest of my life, I will have RA in some form. Like, it can, I can go into remission, but I still do have RA. So, for me, it was hard because I was like, I thought there was going to be something wrong that I could just get fixed. And then, I can go move on with my life. So, it was the fact that it wasn’t something that was an easy fix. And part of me, especially for how much pain I was in, and the — there was a small amount of activity that I can do, versus as active as I used to be. And being a dancer and just wanting to just run around all the time, I had to go through the process of mourning the life that I had in my mind for myself. Like, I had to factor in the fact that I have RA, you know, and just kind of make a new dream for my life.

Cheryl:  18:14

That’s huge. And I think it’s interesting to me how different those diagnosis conversations can be so different depending on the provider. Because I do remember I was the captain of my soccer team, division three, so it wasn’t like crazy, but like I weighed like 25 more pounds than I do now of muscle. Like, I was a lot, I was a lot stronger and more active than I am now. But the first 10 years after my diagnosis, but my doctor said at that initial appointment, the rheumatologist said, “Our goal is to get you back to doing all the things you were able to do before, if you respond well to the medicine,” she did have that caveat, like, right now we’re in this exciting time period where, like, you can play soccer, you know, run, swing dance and stuff. So, she kind of gave me this hope, which was founded by evidence. But also, for me, it made me not realize how serious the condition was until I had my first flare. So, it’s like a mixed bag. But it sounds like in years, they were kind of like — it might be that maybe yours was more severe because it had gone on for so long without being treated that the prognosis was maybe less, like, but did anyone ever say to you, like, we want you to get back to be able to dance again? Or was it more like that’s not going to be realistic?

Tyra:  19:36

Well, truthfully, with most doctors that I face, I have to prove to them the amount of pain that I’m in and the amount of pain that I was in. So, for me, I really had to just kind of be honest with myself, but it was more of I would tell people how much pain I’m in and they’d never believe me. And yeah, it was as if they thought I could do all that stuff now. Like, even later in that same appointment when I got diagnosed, and it was around the same time where I was having all the trouble and needed all that help from my mom, one of my doctors wrote in my chart that I was a perfectly healthy, high-functioning 23-year-old, which I was 23 at the time. And I was like, did you not listen to a single thing I said?

Cheryl:  20:25

That is egregious. Like, as an occupational therapist, we have all these ways of rating people’s function on different scales. And like, if you can’t bring like a fork to your mouth, like a food, that is severe.

Tyra:  20:40

And they did not believe — they didn’t believe me. Like, I would say that. And it was just —

Cheryl:  20:45

We should say, for the people who are just listening. Like, I just, I wonder if race comes into play. I wonder — I know.

Tyra:  20:56

And also, to add to this, like, I am very independent, and a lot of the things I have to do, I have to do alone. So, it’s like, I’m going to these doctor’s appointments, and I have to go by myself, or I have to do these things by myself. And so, even when I’m coming to an appointment and because my hands are so bad, I can’t roll myself in a wheelchair, so that means I do have to walk in. And so, by the time I get in front of the doctor, it’s like, oh my gosh, I’ve done all these things for the day. And I’m usually very peppy and very like, I don’t know, very high spirited, even if I’m really, really not doing well. And I just don’t get believed. I just don’t get believed. They just don’t believe me at all.

Cheryl:  21:37

I’m so sorry. You deserve so much better than what you got. You really —

Tyra:  21:43

I know that. I know that race is a really big factor. I know it is.

Cheryl:  21:47

I think there’s statistics — I’ll look them up, because I know the American College of Rheumatology, which is like the professional association for rheumatologists, kind of like the American Academy of Pediatrics is for pediatricians, you know, they have started looking, especially in the last three or four years, really making sure they update all their materials to include like, for example, psoriasis, pictures of people, not just white people. Oh, red tender, swollen joints? Well, if someone who’s like as white as a sheet like me, yeah, it might look pink, but on your skin, darker skin, it’s not going to look that, you know. They need — there needs to be — sorry, I’m going on my soapbox, and it’s not mine to say because I’m a white woman, but —

Tyra:  22:29

Yes, you do. Yeah.

Cheryl:  22:31

Yeah. Okay, yeah, that’s true. I know, I get so, I can like, talk myself into circles about this. But there needs to be better treatment and better — women need to be believed. Black woman need to be believed.

Tyra:  22:42

And like you’re saying, so, yes, because I was having a lot of discoloration in my feet and in my hands. And so, for me, my version of discoloration, versus a picture that even when I was like telling my doctor about it, he was like, “Oh, well, if it doesn’t look like this, then you’re good.” But it’s a picture of someone who is white. And I’m like, my skin is never going to look like that. But I’m telling you that the way it looks normally, versus the way it is looking now, is different. And so, like, I can tell you that from my body, something is going on here, you know. And like, even when I’m googling things, and comparing — can you hear that? 

Cheryl:  23:27

No. 

Tyra:  23:29

But yeah, even when I’m googling things, and I’m comparing them, I’m comparing them to these pictures of people that don’t have the same complexion as me. And so, it’s not going to look the same.

Cheryl:  23:41

Yeah. Yeah, it’s, I mean, and there needs to be a representation of different, you know, racial groups within the doctor population as well for that, you know, and the therapist, physical therapist, you know, all the different medical providers. Because if someone had understood that, you know —

Tyra:  24:00

And I have, I have had a doctor who was Black, who was my rheumatologist, and when I started having discoloration happening again, and he looked at it, he was able to really notice it and say, like, this doesn’t look right. And it was a completely different response from the other doctors that I was telling about it.

Cheryl:  24:24

Yeah, and you think about that time that some of them, if they’ve been practicing for 20, 30 years, yeah, they really aren’t up to speed sometimes with, you know, their education was not racially sensitive or racially competent. I don’t even know what the right word is. But so, I mean, yeah, the statistics are just really, like, in general, autoimmune diseases, whether you’re male or female, are like, take three to six years to get diagnosed. But it’s way more if you’re female, it’s gonna take longer. And if you’re not white, it’s going to take even longer, basically. So, you kind of have all these strikes against you. And without even — and with no fault of your own, obviously, you know. And I’m just, it’s just so unfair.

Tyra:  25:09

And then, it’s like, okay, you add on to the fact that, like you said, if I’m Black, and I’m not being believed, and then also, too, if we add in the financial element of I was facing a lot of financial insecurity. So, I’m being forced to work and provide for myself. And so, of course, I am doing all of these things. And also, when I get to the point where I’m in front of a doctor, I know that I have to be my own advocate. So, it’s still presenting a face of someone who is still doing so many things, and juggling so many things. But like, that doesn’t negate how sick I am or how much pain I’m in, you know. It’s just like, all of these factors that just run together. And also, too, like, if I’m by myself, and I’m being independent, and I’m coming in front of a doctor, I don’t have another person with me as a witness to speak to how much pain they watched me be in. I was kind of in my apartment with my pain alone, struggling. I feel like that’s a, that is a thing, too.

Cheryl:  26:11

So, true. I really think it’s like if that — it sounds silly, but if a tree falls in a forest, no one hears that kind of thing, you know? Like, I can really relate to that, because I’m like, very extroverted, and I like to share about my life, but I don’t feel, I don’t enjoy intrinsically sharing, like, the worst moments. Those are all private, you know. But it’s like, but if no one ever sees it, if I don’t ever talk about it, then they don’t — but that’s more about me sharing, like, you know, publicly, my story. But in your case, it’s I do have the — I think I have the privilege of, at this stage, I’ve had rheumatoid arthritis now for 20 years, but I was diagnosed when I was 21. And I am believed, you know, in most of my interactions with the providers that know me. Now, I did go to the ER, and that’s a whole other story once, but I’ve only been to the ER once.

Tyra:  27:00

Ah, I have an ER story too.

Cheryl:  27:02

Oh, I was — 

Tyra:  27:04

I would love to hear it. I would love to hear it.

Cheryl:  27:05

No, it was just I had like a really, really severe heart palpitation, which I never — I occasionally can hear, it feels like my heart, like, double skips a beat, you know. But and I got very, like, lightheaded, almost as if I was going to faint, and I was like, what is going on? Now, I do have a history of like, I have had panic attacks in the past. But this was nothing to do — I wasn’t panicking about anything. Like, those are, my panic attacks are always contextual for like, claustrophobia. So, like I’m in an MRI or something. So, yes, I have a history of anxiety disorder, but to me, it’s like I never in my life have gotten like a, like an episode like that out of the blue before. So, I ended up going to the ER. Of course, you know, within like 10 minutes, they’re calling me a hypochondriac. And it was just awful. It was just so — it was the, yeah, so it was bad, yeah. And it turns out, I remembered it later on, a couple of days later, that I was like, you know what, it was — they were, ironically, because I know that there’s some construction going on at your place. I was working. I was working that day; I was at an elementary school. And someone on the floor above, I don’t think they were doing construction but they had dropped something really heavy. And it had made a really loud noise. So, I think my explanation, looking back, was that it’s like an exaggerated — have you ever heard of like the startle response? Like how infants do that when they’re shocked? I think I — and their heart rate goes high because it’s like a, like the name is actually like a startle response. I think my body just suddenly like released a ton of adrenaline that made me lightheaded and just made my heart skip a beat or have a palpitation but it was not any, it wasn’t a symptom of anything else. But it just, I actually asked him before we left, just because I was like, you know, I know you’re saying that my heart EKG was good and everything, you know, but given I have this diagnosis of rheumatoid arthritis which comes along with heart issues, I was like, is there anything else I should be looking out for, like in the next few days? This is all new to me; I’ve never had any heart thing before. And he’s like, “You know what, I don’t actually want to tell you anything that it could else be, because I think you’re the kind,” he literally said, “You’re the kind of person, if I tell you, you’re gonna just worry about it.” So egregious. I was like, who died and made you my therapist? Like, I already have a therapist who, like, I didn’t — anyway, so that was mine.

Tyra:  29:25

And you gatekeeping information, which is like gonna make you, I don’t know, maybe even Google things. And then, that’s worse than me being told by you directly what things that could — 

Cheryl:  29:38

It was so insulting, like, it was really insulting. So, I’m like, yeah, I’m trying to be a good self-manager of my condition and you’re withholding information because you’ve decided that nothing’s wrong with me other than anxiety despite me having other, like, I did have a diagnosis at that time of gastroparesis, which is a dysautonomia, so it could have been like a POTS type thing. But it could have been something really, the RA — my rheumatologist was so livid when I told her about that. And that’s not, that’s nothing compared to some of the stories I see on social media about people who are truly — the worst stories from the ER — people who are truly in distress who are not believed. I mean, that is a horrible, yeah, what was yours? Let’s go down memory lane.

Tyra:  30:17

So, when I first got diagnosed in 2021, the first thing that I was prescribed, um, I don’t, I don’t want to say what it is. But the first thing that I was prescribed caused me to start having seizures. So, I took maybe about, I took it for about three days. And I started having — before I would have shakes in my body, and kind of just, like, the inability to control my own extremities. And then, which that was separate. But so, I thought all of it was coming together. So, then, I didn’t know what was going on with me. And then, I started having seizures, and they just kept increasing and kept increasing. And I had maybe about 23. And I was to the point where I wasn’t even here on this planet anymore. And I finally was, like, being rushed to the hospital. And when I was in the waiting room, I started having another one. And then, finally, like, because when I was trying to check in and everything, they were just like, okay, you’re gonna be in the line with these maybe 20 people. And then, I started seizing. So, then they immediately brought me back. And when I woke up, I remember they gave me some medicine to stop the seizures, basically, because I kept seizing. And I wake up later, I don’t know how much time had passed, but then there’s like a doctor standing over me. And he was just kind of like looking at me. And I started talking to him and kind of telling him what happened and how long they’ve been happening. And I kept a log of all of them. And my ex-boyfriend at the time, a lot of my seizures were happening around him, and he would watch me. And so, I wasn’t conscious of what was happening, but he would tell me after and then I would log it. And so, I told him all of these things, but also in my life, there’s like a lot of stress and distress and whatever. And so, he started asking me like personal questions, and then he was just like, “I think you’re just stressed and overwhelmed. And also, you have this other diagnosis. So, I think you have a somatic disorder,” and wrote that in my chart, like, on my medical records.

Cheryl:  32:44

Right to jail. Like they say on Tik Tok, straight to jail. No one should be allowed to use that, I’m sorry. That needs to be taken, stricken out. I don’t care if it really is a real thing. It doesn’t matter because it’s so misused.

Tyra:  32:59

Fully, I am — I seized in front of you. And he told me I have a somatic disorder. And then, so, like I said, that gave me medication to stop the seizures because without it I was like seizing just repetitively. And then, right after they gave me medication to stop the seizures, he gave me a test to try to induce a seizure. But I had just taken the medication to stop me from seizing. And he said, “Well, there were like a little bit of like activity happening, but not enough to say that you were seizing. So, it must be,” he said, what he said, “Seizures of the mind.” And then, I told my my doctors who prescribed me the medication about it. And they were like, “Oh, well, we’ve never really heard of any of our patients having that problem. So, I don’t think it’s connected to the medication.” And then, I went to a neurologist and talked to him about it. And then, he was like, okay, stop taking the medication. And I mean, if they immediately stop after the medication has cleared from your system, which it did, then it was the medication.

Cheryl:  34:13

I mean, I feel like every single possible side effect is always listed, you know. It’s like constipation, diarrhea, seizures, lack of seizures; like, it’s everything, you know. So, or you could be the first person and that’s okay.

Tyra:  34:28

I could be the first person. 

Cheryl:  34:29

Yeah, that reported it, you know.

Tyra:  34:31

And also, it’s not like no one has ever had seizures because of the medication. It’s just not common.

Cheryl:  34:37

Oh, that’s my least favorite thing. Like, it doesn’t matter how common something is that you’re the person that’s happening to.

Tyra:  34:43

Because when do things get reported if there’s not a first person to have it happened to them?

Cheryl:  34:48

Yeah, yeah. Oh, I cannot believe you had a seizure in the ER and they still didn’t believe you. I’m sorry. Like, what?

Tyra:  34:57

It was, it was insane. It was — I was like, I understand not believing me with pain that is invisible, you know what I mean? I could rationalize that in my head. But to full out seize in front of somebody and then be immediately told that it is a seizure of the mind? It’s just…

Cheryl:  35:20

Oh, man. I’m so sorry. That’s — I don’t know if you’ve ever gone over these experiences in therapy. But I was shocked when I went to therapy, I went to therapy for the first time for, quote unquote, like, ‘postpartum depression’. I’m saying that because that’s what I thought it was. I didn’t really think it was depression, because I wasn’t sad. I thought depression was sadness. But I was like, just constantly irritable, and just didn’t feel like myself. And I was like, okay, I have permission to go to therapy, because it’s postpartum. And there’s always awareness about postpartum, you know, these issues. And I thought I was just gonna be talking about transitioning to my role as a mom. And oh, my God, within like two sessions, everything ended up being all roads lead back to me having to finally process some of the shit I had gone through as a chronic illness patient. And again, and if you — at the time this episode comes out, Episode 100 will have come out, which was my diagnosis story, and I have my parents on the on the episode. And in terms of looking at it from an intersectional point of view, you know, we had socioeconomic privilege to the degree that they made the financial decision. It wasn’t like it was an easy decision. It’s not like we’re like, you know, the CEO of Boeing or something. But they hired a concierge doctor, and that wasn’t as common back then. And that was like the doctor that’s like, they’ll answer the phone 24/7. And even she said, at first, “I think you’re just anxious.” Like, she didn’t think anything else was wrong. And then, but then, she eventually diagnosed my RA when I started having more joint symptoms. 

But all of this is to say that I have gone back in therapy and really revisited a lot of these, you know, the trauma of not being believed, even when everything else is going for you. Like it’s just, there’s nothing quite like it, you know, I don’t — and my heart goes out to anyone right now who is experiencing that.

Tyra:  37:12

It’s really tough. Like, it’s, I think it starts to, for me, it started to, I’m like, well, am I? Am I wrong? Is this in my head? Well, maybe my pain is not that bad. Maybe I need to hide it, or just, I’m just like, no one’s gonna believe it, or no one wants to talk about it. So, then this is private. And also, with my family, they, I think sometimes there’s this thing that’s like, when you speak something, it gives it power. And so, for a long time, some of my family members would not say my diagnosis, or speak my diagnosis, or even, you know, talk about it to me as if I had it. And they would tell me, “I’m not claiming that over you. I’m not claiming that that’s something that you have, because then it would have power over you.” And so, it, it became such a crazy thing in my head of I just don’t even know how to process this anymore.

Cheryl:  38:17

It sounds like kind of the old fashioned, like, evil, almost like subtle, ableist way of looking at things. Like, well, you’ll just, you know, “I have RA but it doesn’t have me,” or, “I’m gonna conquer it.” And is that —? Yeah, okay. Yeah.

Tyra:  38:32

The outlook on medication being, you know, you don’t want to take that, because then you’re going to be addicted to it, and you don’t want to live by that. So, like, don’t do it. And it’s all the pressures from people. And because I needed help, and financially, I needed help. And I needed support. And of course, that goes to my family in trying to get that support from them. And so, it’s like, they have all these ideas about the way that I should be treated. And also, you know, not claiming that I have this disease. So, not staying on this medication and not thinking that this medication is going to be a forever thing. And it just became a whole heap of things that I needed to work through, too. And like you said, just kind of looking at healing from a more intersectional point of view, it caused me to work through that as well and how my family dynamics ties in to the journey that I had to go through, and being able to stand on my own with even being able to claim my diagnosis, you know. It was like, it was kind of like I was standing on an island saying, “I have rheumatoid arthritis,” and that’s okay. And for some reason, I’m the only person who thinks that that’s okay.

Cheryl:  39:50

Well, because, yeah, it’s so — the way I see it is it’s like, if you think that having RA makes you less than, like, less worthy, less capable, then you’re going to be afraid of it and be like, oh no, like, you’re just, you just need to rise over it, or conquer it, or whatever. And then, you can lead a good life. But what if this is just something in your life that definitely has a gigantic impact on your life, but you are a hundred percent just as worthy of love and respect, and just as valuable a member of society with it, with this condition. It’s not a way for you to —

Tyra:  40:27

How many people have told me that I need to just listen to YouTube affirmations to get out of the sick person mindset. Oh, I can’t tell you how many times I’ve heard that.

Cheryl:  40:38

Like, I enjoyed the reality mindset, which is that I have a legitimate illness. Like, yeah, I’m sorry. That’s, yeah, I really have no patience for people who claim that you just need to think your way out. Again, it’s that desire for control. If it’s your fault, that means you can control it and then you can just think your way out. And I’m sorry. Yeah, so I feel very defensive for you.

Tyra:  41:02

Yeah, and I think sometimes it’s okay to be like that. And like, be a little defensive. And not defensive, I don’t know if I want to say that. I think defensive is good. So, I like it. Thank you for being defensive. But I think for others, maybe defensive is not the exact thing, because then I know when I’m talking to other people about certain things, and they start to overstep and how they’re telling me to, you know, deal with my diagnosis. They have called me defensive. And I know from them, it’s negative, you know what I mean? Like, yeah. And I think that that’s okay. And I think that that’s a great place to be because it’s like, I know what I’m doing for my treatment. And I know how I’m going about this. And if you don’t agree with it, like, it’s okay for me to not have any patience for that. And yeah, you know what I mean? Like, there was a moment when I had to, like, really come to terms with that for myself, and kind of take ownership of my plan of care, and how I want to be treated, and how I’m going to go about, you know, managing my disease. And like, that is my choice. And people can have opinions. But at the end of the day, what I choose is neither right nor wrong, and no one else has a say on that except for me.

Cheryl:  42:29

Yeah, you’re so, like, young to have already gotten to that. That took me like so many years to get to. But it’s still, I’m guessing, a process. I don’t mean to be like, you’re a hundred percent — yeah.

Tyra:  42:40

No, it’s still a process. But it was like, it was probably the most relieving thing. It has been the most relieving thing for me. Like, oh, my gosh, I was trying for so long to be the perfect patient, be the perfect daughter, be the perfect student, be the perfect everything at the same time and make everybody happy with how I was handling everything. And there’s no space for that.

Cheryl:  43:09

No, it’s too much pressure to put yourself. And perfect doesn’t even exist anyway, right.

Tyra:  43:15

Yeah, yeah. And I was having, I was feeling a lot of pressure, even like coming from my parents about, you know, don’t think you’re going to be on that forever, or medication is not what’s going to heal you. So, you need to put your sights on this thing, or this thing I found on the Internet, or this other thing I found on the Internet. And it’s like, that is just as risky as you think that medication is. And I, you know, had to decide that for myself. Like, I still haven’t found the right medication for me, and I’m still experimenting a lot, but that’s okay. And whatever thing people find on the Internet and think that that’s the thing that’s going to magically heal me, I don’t have to dive into that. And I can be okay with this journey of trying to find the proper medication with my own medical team. And then, that’s okay. 

Cheryl:  44:12

Yeah, the anti-medication bias runs so deep. And it’s really a shame because medications, it’s almost like if your mom — oh, sorry, that’s my dog shaking — if your mom could see all the people that aren’t coming into the clinic now. Like, I have OT and PT friends who will say, my friend Joanne, she’s a certified hand therapist, she’s like, we don’t see anyone with RA hardly anymore, like, because they’re just — she works in a post-surgical clinic. So, she used to say people with knuckle surgeries for severe deformities. And she’s like, they’re just gone because the medications are working so well for the majority of people, you know. So, it really is the case, like, just statistically the medications are going to at the population level, you know, give people the best chance at the highest quality of life. And lifespan. I mean, RA, if uncontrolled, takes 7 to 10 years off your life. You don’t want to play around with that with natural methods that historically have not been as powerful as medications. Although, long-term, you might find a balance, right, it’s not an either/or. You could do natural — I mean, OT is like what we do, lifestyle, right. It’s sleep, exercise, nutrition, stress management’s a big one. They’re all helpful, it’s just, you can’t, those aren’t going to take the place of medication for the vast majority.

Tyra:  45:31

And also, the thing to add to that, too, because of my financial situation, and having to constantly work, and having all of that stress on me already, and the process of finding and trying different medications, it’s like, there’s no time that I can, you know, set aside for this medication to not work for six months, and I can’t do anything, and I have no way to care for myself, to pay my rent, to do all of these different things that I have to do for myself. Like, you know, my doctor is like, “Okay, this medication is not working for you, let’s switch,” and I’m like, oh, my God, because there’s this, there’s a chance that this is not going to work for me, and I’m going to be stuck in my bed and not being able to do anything. There’s no time that I can just look at my calendar and say, “Oh, that’s a good time to do that,” you know, that’s a whole ‘nother element. And then, there’s no — my flare ups come all the time. There’s no time I can pencil in for that. There’s no time that’s the right time for that to happen, you know, it’s —

Cheryl:  46:35

Oh, yeah, yeah, there’s really a lack of, I think, under — it sounds like there’s a lack of understanding of what the real impact is of these kinds of decisions on your life, your actual, every day, nitty gritty life that you’re trying to Iead, you know.

Tyra:  46:50

I think especially when I don’t have that built-in support system to the point where I’m like, okay, I can do this for this long period of time, and someone is going to pay for everything for me, make my meals for me, like, clean up for me, help me get to the shower, help me get to the bathroom, like the small things, and then the really big things. My mom helps me as much as she can. But still, yeah, it’s not sustainable. And I think it’s a different experience than some of my friends that I am so glad that they are blessed in the ways that they are. But when something happens to them, it’s like, their family member can fly out and be with them and take care of everything so that all they can focus on healing. Like, I don’t have that. I don’t have that built in insurance. And a lot of people don’t. And so, it’s a completely different way of life. It’s a completely different, like, journey to go on and experience any illness with that being the set of circumstances. And so, it’s like the baseline of stress is already…

Cheryl:  48:00

Yeah. Yeah, it’s intense. It’s intrinsically stressful. And then, when you know that stress is, you know, can drive more inflammation and make your symptoms worse, and then you get that cycle, now I’m stressed about being stressed.

Tyra:  48:14

Yes! Oh, my gosh, stress about being stressed. There was one point I was in so much pain, and finally, all of the burdens that I was carrying, and the role I was playing in certain relationships that was just like, kind of just taking on all of that, I had to stop. I had to cut it off. And like, when I feel that thing in my body just revving up, it’s like, Tyra, stop. Go away from it. Stop it and leave it alone. Like, giving myself the permission to back away from these things. And to let them be. And it’s like, even though I’ve played this role in my family for so long, it’s like, it’s not serving me. So, I have to let it go. I have to let it go. Or even friendships, I’m like, it’s not serving me, I have to let it go. Or even projects that I think that I need to be doing. When it’s like it is hurting me more than it’s helping me, let it go. And that has helped me so much. Because I used to be such a no matter what, stick it out to the end.

Cheryl:  49:17

Yeah. Yeah. You don’t have the luxury anymore, no. And, you know, I think people listening are probably like, wow, she is so, you know, she has such a unique or interesting story that I haven’t heard before. Because the majority, I do want to acknowledge, the majority of like, the representation of women, of people with rheumatoid arthritis online — so, especially on social media — is like, you know, white women. And so, you have a totally different perspective than the ‘average’, quote unquote, if you just look up rheumatoid arthritis, you’re gonna get —

Tyra:  49:48

Yeah, what you see. You’re right, exactly.

Cheryl:  49:50 

And so, you have taken upon yourself to make a documentary about your life, which is so, I am so excited about this. Like, I literally, like, you — again, the algorithm didn’t lead me to you, because my algorithm has probably figured out that I’m a white woman. And it’s like, fully giving me a selected slice of what’s out there. And so, you reached out to me, and I mean, it was like, I want to have you on the podcast, like, your story is so amazing. So, anyway, tell me about what is it like to make a documentary. Like, what made you, led you to it, whatever you want to say about it. You have the floor.

Tyra:  50:28

Okay, I am an actress and a filmmaker, and I make art and anything art. That is why I love it. And so, I recently graduated from DePaul University for acting. And so, you know, I’m trying to do my little actor thing, I was signed with an agency and just trying to make my path. But also financially, I was really, really, really, really, really, really struggling. And I was working around the clock, and I was in excruciating pain. And honestly, I was kind of watching my health and my body just crumble. And oh, my God, I got to the point where I really thought I was going to die. And I was in, and that’s when I started seizing and everything. And I would like seize, and I was like, my rent is due, and I don’t have any food, and I need to make money. So, I need to go to work. And so, it got to the point where I was so, so, so very unwell. And my best friend, Abi, she knew about this. And like I said, my ex-boyfriend had seen me seizing and he didn’t he didn’t feel safe leaving. He didn’t feel comfortable leaving me. And so, we called her, and she watched me. And she really, like, kind of took me and forced me and was like, “Tyra, you don’t usually want help, but I’m going to help you and I’m going to buy a plane ticket for you to go home so you can go to the hospital.” And so, when all that happened, I came, I finally came back after I kind of recovered a little bit. And my best friend, Abi, and her boyfriend, Nic, she started a GoFundMe for me to help me pay for the medical bills that I racked up when I went to the hospital. And her boyfriend was recording the video for me. And he was like, you know, this is a story. Like, there’s a bigger story here. Like, this could be a full documentary. And I was like, I don’t have a story. There’s nothing interesting here. Like, it’s just, and then we really started talking about and we’re like, wow, no, we can, we can make a documentary. Like, we can do this, like you went to school for documentary filmmaking. And I’m a filmmaker. And we can do this. Like, we have what it takes to do this. And so, the three of us embarked on a journey, and I was doing it while I was so, so sick. And I thank the two of them for showing me how possible making spaces accessible is, and how accessible filmmaking can be, and how accessible a process can be when you have it in mind and you focus on doing that. And I directed it. And also, I learned how to sound mix for it. And we were kind of just doing navigating everything and learning things together. And so, we were just trying to get as much footage to kind of piece the story together. And it was a whole journey kind of trying to — because I think we would say, “My pain is invisible.” So, making this invisible pain visible. And showing, like, I think a lot of things that people in the chronic pain community will recognize that other people won’t recognize, like me pulling a hot pack or an ice pack or like rubbing a cream on me, like I feel like some people will see a little bit of the bottle and be like, “I know exactly what cream that is.” And so, trying to capture those things. 

But also, because I am an artist and I’ve had pain for a very long time, I just didn’t know what it was. So, I’ve also encountered a lot of other artists that have been taken out of this field because they got an injury that didn’t just go away in a week. And so, that completely ruined their career or, honestly, ruined their body when they ignored those injuries because they didn’t have the space. Because a lot of times we treat artists like they’re just expendable, and we don’t give people the proper maintenance tools or even just setting them up for success. And so, I wanted to make this documentary to be, number one, representation for artists dealing with chronic pain and disability and being in artistic spaces and making artistic spaces accessible, and like, what that journey even is; but also, just boiling it down to what is it like for somebody with chronic pain to exist, especially in this society that is very, very ableist? What is it like? What are the things that are faced on a day-to-day basis? What are the financial components of it? What are the social things that one goes through? I mean, I really had to mourn my social life. And even now, there are so many things that I was dreaming of and planning for me to do as a young person that I have not been able to do. And I was kind of trapped in a house since I was 19 up until, honestly, a couple of months ago. And still, I still am in a way, but trying to figure out those ways to make things accessible for me. Like, it’s just like giving myself the freedom to do things in a creative way in order to make it possible for me. 

And so, yeah, and also the representation of a Black woman, a Black woman as an artist, and then a Black woman as an artist with chronic pain and chronic illness. Like, what is that story? What is that like? What goes into that? And also, I’ve been so blessed to have a really loving community and friends. And like I said, my mom, being a physical therapist, like it takes a village, I think. I think it takes a village. And it takes a village for anybody to do anything, but especially the things that I have had to overcome, I needed that village, and with that, I needed people that had the mindset that we can make this work. I’ve been, yeah, I’ve confronted so many people that are just like, “It would be too expensive for me to accommodate you,” or it would be, “It would ruin this process for you to have the things that you need,” when they don’t even know what I need. It’s like the things that I personally need I already have, because I need them. I just need the space and possibly the time, which is not that much usually. Like what I’m saying is for a play, we would have sometimes five-minute, 10-minute breaks. And for me, when I was really suffering and I was in a show, it would take me about five minutes to get to the hall, down the hallway, because of how I had to walk down the hallway, or how I had to wheel myself in my wheelchair down the hallway. So, if we could just change our break time to about 15-minutes to actually accommodate me and what I need, and probably what some other people need, but they’re just not speaking up about it. If we can just factor those in, it would be so easy. It’s so easy. 

Cheryl:  57:49

And everyone wins, too. 

Tyra:  57:51

Everyone wins. And everyone wins. And it’s like, also, art imitates life. And I think a lot of times people take how they are supposed to, you know, operate in society based on media representation. So, if we are not showing any representation for a certain community, the majority of people have no idea how to interact with this community. They have no idea what to do. They have no idea what they need. But if we are actually incorporating media representations, we are teaching people what to do and how to act and how to make play spaces accessible, like, from the beginning. And so, I wanted this documentary to be that, be a representation, to even just be like, for me, when I would go on social media and I would like — even seeing your posts and seeing things you put on social media, I felt less alone. And I felt — because, oof, when I got diagnosed, and when I was in the amount of pain that I am usually in, I got to the place where I was like, there’s nothing that I can do. There’s no one that wants me. This amount of pain that I am in is not worth living through. It’s no longer worth living with everything being as it is. But then when I started to, you know, be in groups and be in community with people and seeing representation and seeing that I’m not alone in this feeling, I’m not alone in this symptom, I’m not alone with dealing with these things, it reminded me that I’m okay. And I’m not alone. And I’m special; and I’m worthy. And all of the things that, you know, seeing the mainstream ableist, like, you know, representations of what life is supposed to be, that really kind of ripped my joy out of me. It started to feed that back. And I want my documentary to be that for someone, you know. If it’s just one person, I think that that’s insanely successful.

Cheryl:  59:56

Oh, well, and it’s — and I’ve seen the kind of the, the five-minute preview that you have of it, and it’s — so, for those listening, at the time of this recording in late July 2023, it’s not all — it’s in process still.

Tyra:  1:00:09

Yeah. But you can include the post-production side of it now. 

Cheryl:  1:00:13

Yeah. So, you can go to, the website is mynameistyra.com, right. And then, there’s an Instagram, which we’re going to put in the show notes, too, that you can follow to be kind of on it to know. Is there a way to know when it’s fully done? I just think it’s amazing that you’re doing this, I think, yeah, I mean, I didn’t even really learn about representation in media until I took, I went to a very liberal arts school in New York. And I took a, I majored in psychology and minored in anthropology. And I took a class called Language, Gender and Media, and they had us look at us — because I love children’s media, and they had us, like, look at old clips of children’s cartoons from where we were younger, and just count how many are male, and how many are female. The default person/character, and every single piece of media that I looked at, it was like, the Smurfs, you know, 19 men, 1 woman; Looney Tunes, you know, 10 men, 2 women. It’s like, wow, just from gender representation is so skewed towards men. And then, when you look at race, and disability is just completely — maybe one person, a token person in a wheelchair very occasionally. And for the vast majority of those, it’s like, they didn’t let that stop them, like that ablest narrative, you know,

Tyra:  1:01:44

Exactly. And that’s what I’ve been confronted with to just like, socially, is, yeah, it’s that story of, okay, they were in a wheelchair, and then miraculously, because of their sheer strength, or just some miracle magical thing, that now they can go off and do these things. It makes the majority of people not know how to deal with someone who has a chronic condition, because I even saw in my community of, oh, okay, we understand what’s going on with you, and we can be sad about it. And then, in two weeks, you should be healed, and we don’t want to hear about it anymore. You know what I mean? Like, it’s just like, oh, why are you still talking about this?

Cheryl:  1:02:30

Yeah, when are you gonna get better? It’s so — I actually have this idea of a children’s book, maybe I’ll speak it into the Universe. And if someone else beats me to it, you know, more power to you. But my idea is like, some ow-ies don’t get better. Like, our whole life we’re sold this idea that you get an ow-ie, but it’s okay, you go to the doctors and make it better. No, they don’t always make it better. Sometimes you get sick, and then you get a little bit better. And then, you get a little bit worse, and you get a little bit better, and you get a little bit worse. And it’s up and down the rest of your life. There’s like no conclusion to the story.

Tyra:  1:03:04

Yes, yeah. It’s like when people see me with my ice packs, which I do, like, twice a day. They’re like, what happened? And then, they see me in a wheelchair one day, and then, like, if I’m up and I’m able to walk, they’re like, “Oh, you’re so much better!”

Cheryl:  1:03:20

Oh, I know, I’ve done the same thing too. And I think it’s so complex. I’ve done it to other people, too. Because it’s like, yes, it’s not the kind of thing where like, let’s say compare it to autism, where it’s like, like, you know, let’s say there used to be the person-first language, ‘person with autism’. Now, the pendulum has swung where the Autistic community prefers to, first of all, have identity-first language, like, ‘I am Autistic’. And it’s not like some cancer that’s thrust upon me that I would take away. It’s how I am. It’s who I am. And I like it. And you need to accommodate me rather than taking this away from me. But whereas someone like a physical ailment, like rheumatoid arthritis, for me, it’s like, yeah, if someone gave me a choice to have rheumatoid arthritis, or to not have it, I would prefer not to have it. And I can, it is part of my identity, because I have it but I could still be the core identity of Cheryl being, you know, that what I value and who I am, could be the same without, you know. So, it’s complex in that way, but I still want to be seen and I see myself as just as worthy, again, worthy of love worthy, yeah, meaningful life.

Tyra:  1:04:32

It’s like the lessons that RA has taught me and the ways of like, you know, being an artist and being a person and being a friend that I do credit a lot to RA. Wonderful. I love those lessons. But there’s another side of RA that is insanely, insanely hard that if I didn’t have to do with it, oh my god, please let me not, you know.

Cheryl:  1:04:57

Yeah, you’d have more time to develop it — yeah, I actually had someone on the podcast and I don’t want to be like, she’s wrong, and I’m right. But it was just interesting because I said something like, I said that actually, I always, I often repeat myself on this podcast. So, I said something pretty much similar to what I just said. And I was like, you know, my life, I don’t want to sugarcoat it, like, my life would be easier if I didn’t have RA. And she’s like, no, but it wouldn’t, like, you’d still — no, it would. Like, if you held everything else equal. Yeah, it’s okay just to admit that, like, this is a barrier to my function. Like, it is. And so, we can live with it. And I can still do my best to, you know, live an empowered existence. But I don’t want to pretend that my life would be — just if everything else was the same, I didn’t have RA, I would have a lot of mental space and time freed up to do other stuff.

Tyra:  1:05:52

I’m like, the mental capacity that I have is so reduced, and even so reduced from what it used to be, and the amount of time that I can put into my art, the amount of time that it takes away from every single thing every single day that I have to do. It’s like, it’s just another element on top of being able to get ready, or even have to have a conversation with somebody. It’s this whole thing that adds so much, so much that if it was gone, it would be so breezy. But I mean, there would be something else, you know.

Cheryl:  1:06:26

It might still be. Yeah, it’s all relative. And there’s the hedonic treadmill, where like we would — but, you know, you do appreciate your health more, once you have had something like this, you really, yeah.

Tyra:  1:06:39

Like, I walked, I walked down this path. And it didn’t hurt. And I was able to, like, sit and then like, walk back. And I remember, like, I started crying a little bit, because I’m like, there was a time when I was just begging and pleading for another chance to be able to take a walk outside. And now, I’m taking this walk right now. And it’s so special. And just like insecurities that I have in my body and in the way my body has changed since, you know, being in pain. And just kind of being more thankful and grateful to my body for withstanding all of that, and still being able to carry me here and carry me back. Like, it’s shifted into a new level of gratitude for just, like, my limbs, you know?

Cheryl:  1:07:39

Yeah, totally. And I mean, yeah, that’s a whole other like, and kind of seeing your body as like the enemy, which is totally something that a lot of people do, you know, initially, it’s a normal part of the process, but then learning how to say, “Yeah, my body’s not functioning as well as I wish it was, but I still appreciate it,” and yeah, have self-compassion. But um, unfortunately, I do have to start wrapping it up, sadly. But is there anything else that you wanted to say about any of these topics before we go to the rapid-fire questions? We can talk for 10 hours, someday we’ll have to do Part Two.

Tyra:  1:08:13

I think I’m just one thing would be something that I have adopted lately is because I saw this a lot in like different self-help ways of re parenting oneself. And I kind of took that to be a part of my chronic pain management of parenting parts of my body, and parenting my pain, and kind of giving that love and reassurance, and sometimes structure that I would want a parent to give to me, like, for love and other things. Like, giving those things to my body. And being able to just love on him, like my knees when they flare up and offering them what they need. And being more mindful in that way. And not being harsh on my body, but being more loving and kind of like I’m taking care of my body. And I am, like, it’s my baby and I can love it and I can give it what it needs. And all of it is okay. That’s, I think, transformed a lot for me, instead of being more shameful and harsh and mean and mad at myself. But being more compassionate.

Cheryl:  1:09:35

I love that. I love that. Reparenting your relationship to your body. I’ve never thought of it that way. But it’s a really beautiful, it’s a really beautiful, compassionate stance, which I hope, I know is gonna resonate with a lot of people. So, for rapid fire questions. Each one of these again could be actually pretty long. But do you have any general like best advice for or words of wisdom that you would want to share with somebody who is newly diagnosed with rheumatoid arthritis. It’s a hard one, right?

Tyra:  1:10:04

I think parsing out the things that you’ve adopted, if that’s like a way of thinking a way of being in relationship and being okay if those things don’t serve you anymore. So, being compassionate with yourself about letting certain things go even if that’s been the way you have asserted yourself in life your whole life, like, it’s okay to let it go.

Cheryl:  1:10:29

That’s super helpful. And do you have a favorite arthritis gadget or tool in your toolbox?

Tyra:  1:10:35

I have so many it’s ridiculous. I have, like, three drawers dedicated.

Cheryl:  1:10:41

It’s hard to choose. I don’t even know how I would answer that, honestly.

Tyra:  1:10:44

I think my roller. I fall asleep in bed with it every day.

Cheryl:  1:10:50

A long foam roller?

Tyra:  1:10:51

Yeah, I have a soft one. I have a hard one. And I even had like this little doohickey right here. And my tennis ball. Like, when I say I have a whole thing. But my foam roller.

Cheryl:  1:11:05

Oh, love it. That’s great. And then, I just love talking about pop culture. So, do you have a favorite movie or show or book that you’ve been consuming recently?

Tyra:  1:11:17

Oh, my gosh. I love Real Housewives. 

Cheryl:  1:11:19

Oh, yes. 

Tyra:  1:11:21

Game of Thrones. I’m rewatching it right now. And Harry Potter. I used to — Harry Potter, I used to watch it every night before I went to bed.

Cheryl:  1:11:34

I love it. My son’s really into it right now too. And I’ve been reading them to him, which is fun. He knows how to read. But it’s like a, you know, bonding activity. And then, do you have a favorite mantra or inspirational saying when things are hard? 

Tyra:  1:11:47

Oh, mantra… 

Cheryl:  1:11:51

If you don’t, that’s okay.

Tyra:  1:11:53

I do have one that’s also on my Instagram. And it’s like — what is it? The reward for conformity is that everyone likes you except for yourself. And I think that kind of relates to some of the stuff we’ve said with even like treatment and trying to conform to certain things when it just is not what you need. Don’t reward people, like, reward yourself.

Cheryl:  1:12:22

Love that. Love that. And then, last one, what does it mean for you to live a good life and thrive with chronic illness?

Tyra:  1:12:30

It means knowing what my body needs and having the means to provide those things. And if not, my first option to provide for myself, having a way to kind of adjust and find a different way to give my body what it needs. I honestly feel that I feel happy and I feel whole, if I have that. If I have the knowledge to treat myself. And then, if I have the means to provide that for myself. I feel whole. And then, a lot of love, a lot of hugs, a lot of just good people and laughing

Cheryl:  1:13:13

Oh, laughter. Absolutely. Well, this has been so great. Thank you so much. And do you want to just share the link, social media? Where would you want people to follow you?

Tyra:  1:13:24

I would love for anyone to just check out my Instagram for my documentary, which is @mynameistyradoc on Instagram. And then, our website is mynameistyra.com. But on our Instagram, we’ll just continuously update everything. And then, my personal Instagram is @___vxcc, and my full name is Tyra Grove.

Cheryl:  1:13:47

Okay, thank you. Yes, absolutely. And I’m going to be following — I’m already following you, but I’m going to be making sure to share, you know, whatever you share about, you know, where the documentary is. And if you go to a film festival or something, that would be so cool. I’m just really excited for you. And I think this is such an important thing for the, like, rheumatoid arthritis community at large, you know, to have that artistic representation. And so, I just applaud you. I know it’s so much work. I mean, it takes me a long time to make a 45-second TikTok, so I can’t imagine the full documentary. That is a lot. I know you had an IndieGoGo page, but that’s not up anymore. Is there any way people can, if they want to support it, is there a different page?

Tyra:  1:14:33

Yes, absolutely. So, there’s a Linktree, I have a Linktree with all the links on it and I can also, like, you can find it on our website and you can find it on my Instagram page, and you can always Venmo me or CashApp me. And if you don’t feel comfortable with doing that, you can personally message me and we can talk about it and say what the best way to send something is, which could be like Zelle, or, you know, whatever. Or even sending a donation to a PO box. I can list that as well.

Cheryl:  1:15:08

Okay. Oh, that would be perfect. Oh, this is so great. Thank you again, I will definitely be watching and tuning in. And I appreciate — I know it’s so, its emotional labor to go back and share these memories. So, thank you for taking the time to do that for the people out there who are listening. So, thank you again, and hopefully we’ll follow up soon. Bye-bye for now!