Beyond the Surface

Beyond Beautiful: Disability, Liberation, Love

Season 2, Episode 7 - Beyond the Surface

🎧 Listen to the Episode

🧭 Episode Summary

In this episode, I'm joined by Stephanie Garrett for an honest and compassionate conversation about living with non-apparent disabilities and the grief that can accompany them.

Diagnosed with hypothyroidism at 14 and later with hypopituitarism and adrenal insufficiency, Stephanie has spent decades navigating autoimmune and endocrine conditions that aren’t always visible to others. Together, we explore the emotional weight of being unseen, the grief tied to shifting capacity and identity, and the resilience and self-advocacy required to live well in a body that doesn’t follow non-disabled rules.

This episode invites us to look beyond appearances and honor the layered realities so many people carry quietly.

⚠️ Content Notes

This episode contains conversations about chronic illness, grief, and the emotional impact of navigating non-apparent disabilities. Please listen with care.

🎙 Guest

Stephanie is a gamer, creative, and longtime chronic illness warrior who has been living with autoimmune and endocrine conditions since her teens. Diagnosed with hypothyroidism at 14 and later with hypopituitarism and adrenal insufficiency at 16, she offers a thoughtful perspective on navigating Non-apparent disabilities. At 35, she brings honesty and empathy to conversations about resilience, self-advocacy, and learning to live well in a body that doesn’t always follow non-disabled rules.

💬 Key Themes

• Visibility vs. Invisibility

• Grief and Death

• Medical Trauma

• Self-Advocacy & Resilience

📜 Full Transcript

Mandi: Welcome to Beyond Disability Liberation Love. I'm Mandi, your Queer Christian Disabled host. I want to start off by sharing that you will hear my voice sound different during today's interview. I was under the weather and was battling a cold and here is a little sneak peek behind the scenes. I do record different parts of each episode at different times, so I am thankfully feeling much better now. I'm super excited for you to hear today's interview. As we talk about non apparent disabilities or what some folks might call invisible disabilities, we also explore the topic of grief and how grief and loss intersect with the disability experience.

Joining me in this episode is Stephanie Garrett. She is a gamer, creative and longtime chronic illness warrior. Living with autoimmune and endocrine conditions since her teens, Steph was diagnosed with hypothyroidism at 14 and later with hypopituiturism and adrenal insufficiency at 16. She offers a thoughtful perspective on navigating non apparent disabilities. At 35, she brings honesty and empathy to conversations about resilience and self advocacy and learning to live well in a body that doesn't always follow non disabled rules. Let's dive into today's interview.

Mandi: Welcome Steph. So happy to have you on the show today. How are you feeling?

Steph: I'm feeling great. Thank you Mandy for having me.

Mandi: It is so cold here in New York. I know you're not in New York, so hopefully your weather is a little bit better than ours.

Steph: Yeah, it's definitely in the 70s here in Houston, Texas. It's so nice.

Mandi: That's amazing. Well, for folks who do not know you, how would you like to introduce yourself to the listeners who haven't met you yet?

Steph: Hi, I'm Steph. I'm a gamer, I'm a creative and I'm a long time chronic illness warrior. I've been living with autoimmune conditions since my teenage years. I was diagnosed with hypothyroidism at 14, which means low functioning thyroid and later upon further investigation diagnosed with hypopituitarism, which means low functioning pituitary gland and adrenal insufficiency. So my body does not produce all of the hormones that it needs to survive and I offer some sort of perspective on invisible illnesses and dealing with some stigma and being technically able bodied but living in a body that doesn't always follow the rules.

Mandi: Really a great intro and really digs into some of what we'll talk about today. So understanding that a lot of the conditions that you shared are not visible to people when they first meet you, what are some of the assumptions that people make when a disability isn't visible?

Steph: They see a normal. I hate that word, normal, quote, quote woman on the outside. They don't see the years of struggle and pain and fighting for my life. They don't see a disability. They see lazy and faking and whatever. They come off as like arrogant and considerate and possibly ignorant that, you know, like when I need accommodations and they don't understand that. They just don't understand.

Mandi: Yeah, I appreciate you saying how a lot of the things can be misrepresented as things like laziness if you don't have the same energy level. And I think it's speaks to our assumptions a lot about like what we expect from people and how we expect people to interact or behave. So you shared a little bit about. It can come up when you need accommodations for something. But how do these types of assumptions show up in your everyday spaces like work or healthcare or even in your relationships?

Steph: Yeah, especially like in grocery stores when I use the electric carts to get around the store, or like at the airport when I get wheelchair assistance to go to and from the plane, or in spaces where they don't have mobility aids. But I'm like taking frequent breaks and it's just the looks and the comments that I get. You're lazy, you're faking it. I want extra attention. I'm taking away from people who really need it. Oh, you're so young. You, you should be doing this. You should be going and to live your life. Stop being lazy. Oh, and. Or it's like, oh, I wish I had that. Like, I wish I had this cool wheelchair. It's a lot of ignorance. I believe that they don't understand the pain and the, the things that I go through behind the scenes.

Mandi: It's interesting how, especially with the last thing you said, where there are some people whose reaction is like, oh, I wish, I wish I had that so I could have this quote unquote special treatment. That is an experience that I have noticed people with disabilities across the board have.

Steph: Right.

Mandi: So me having this visible disability, I've had people say things to me like, oh, I wish I had that, you know, motorized wheelchair. I wish I could go that fast. So it's interesting that you also get that with a non apparent disability, people saying like, I wish I got that kind of treatment when to your point, they don't realize everything that really comes with the experience. It's not just being pampered or treated, you know, special.

Steph: Absolutely. Yeah, they just see it as special treatment or extra help. And, and although it is extra help, it's not necessarily like, oh yeah, I can get this and get that like when I go on a plane. Like one of the, like, I hate the word perks because it's not a perk. One of the perks of being like in a wheelchair and needing wheelchair assistance is that you freeboard. And that's awesome because you will get, get to go on the plane first and pick your seat, go to the front of the plane if you want to sit closer to the front or sit closer into the back. But you know, I feel like it's a juxtaposition of oh, I need a wheelchair. So I get this perk of it. I get to pre board. It's, it's a weird, like, conundrum.

Mandi: Yeah. Because it's not necessarily a perk, which is like a benefit that you get like in addition to something good. It's like having to have this kind of need. Right. So I know I also get the pre boarding on airplanes, but the truth is, a lot of times like, the reason for that is because if the plane is too crowded, there's too many people to help me transfer. Right. The plane is too crowded and there's not enough space for the people to assist me in transferring. It's also extremely uncomfortable to have people like staring at you as you're boarding or you need help. So like, the idea of being able to go on the plane and be settled before everyone else can definitely decrease anxiety and decrease the, the stress of it. But the reason that you need it is not because of some like, positive reason. It's really because of this experience with disability that can sometimes be challenging. So I definitely get that. And as we're talking about some of this like, emotional labor, as I like to call it. Can you talk a little bit about the emotional labor for you that comes with deciding like, if or when you want to disclose the fact that you do have a disability that isn't visible?

Steph: Yeah, it's definitely, it's definitely a tough one to decide when or if I'm going to disclose that I have a disability because my outward appearance, I look able bodied and why that's not necessarily true. I can walk. I'm not necessarily in a wheelchair full time. So I, I, it's hard to explain that to someone who doesn't understand because when they see disability, they see wheelchair or medically fragile, they don't see me. So it's definitely difficult to explain to someone about My disability number one, because I don't want to be a downer. I've had many experiences where I'm explaining my disability, explaining how I have to take medication every day to keep me alive, do blood work every once in a while to, to see how my levels are, to up my dosage, if it needs to be upped, to go to the hospital if I need anything, if I. If it's an emergency. So it's. It's definitely difficult to decide when. And I feel. Feel like it's almost like putting a burden on someone, and I don't like the feeling of putting a burden on someone. And so I'm an open book about my disability and about what I've been through. It's just deciding whether to tell someone and deciding whether I can trust that someone to be understanding and caring is definitely hard. It's really hard to decide that. Yeah.

Mandi: And I would imagine that in certain spaces it could be even harder because, for example, with employment, you don't often get the opportunity to build that kind of trust or even that, like, more intimate relationship with like, a boss or with the people who are responsible for providing accommodations. So I would imagine that in situations like employment, it could be even harder to figure out, like, when is the right time to disclose? Like, should I disclose this at all? Would this cause discrimination? So have you had that kind of experience, like, with the workplace?

Steph: Yes, I have. I look on indeed for jobs. And sometimes there is voluntary self identification. So you can identify whether you're a veteran, what you're raised in, ethnicity. Ethnicity is. And you can also identify whether you have a disability. And a lot of the times I say, yes, I do have a disability. And a lot of the times I say, like, I do not wish to answer. It's definitely hard deciding whether to do that. I go back and forth on this decision all the time because, yes, I do have a disability, but I'm worried that that company or that job, that employer, will discriminate against me. And I hate, I hate feeling like I can toy that line. I hate feeling like that. I don't, I don't want to toy the line of, yes, I have a disability. No, I don't have a disability. Because, yes, I obviously do have a disability. But no, I obviously don't look like I have a disability. And I, I hate that. I hate it so much.

Mandi: It's really interesting to hear you say that because I have heard even within the disability community where there's almost this, like, hierarchy of privilege and people with, like, visible Disabilities will sometimes be angry or upset towards people who have non apparent disabilities because they feel like it's easier to mask or, you know, they have a greater privilege by being able to pass as non disabled. And so I really appreciate your perspective of saying this isn't something I'm proud of or happy about. Like to have to make this choice of masking or pretending that I don't have a disability to fit into certain systems, like this is actually a burden for you to carry that.

Steph: Absolutely. I don't, like, I don't, I go back and forth on this all the time. I, there's moments where I'm like, I put yes, I have a disability because I have this mindset where like if they discriminate because of my disability, then that was never going to be the job for me. And then there's moments where like, I really need a job right now. I don't have a job right now, I just got hired for one. But I really need a job right now and I, I have the privilege to, to come off as I don't have disability. I shade that. I like, I don't, I don't want to feel like I'm like, I'm like the stigma that I'm faking it or that I'm lazy or whatever. I, but at the, in those moments I feel like I need this job so bad. So I just, I don't put know that I don't have a disability. I put, I do not wish to answer because if I get a good feel in the interview, I could potentially say that I do have a disability and how it affects me. But. So yes, you're correct. It is, it is a burden.

Mandi: Yeah. Thank you for sharing that perspective. I don't think that that is something that's talked about enough. So I really appreciate that. I want to touch on something you kind of mentioned a little bit when you were talking about some of the pain or the grief experiences that you have had or that you have both with disability and then some of the other things in your life that I know you've shared with me outside of this interview that you've had to navigate. So we know that grief shows up in many forms and I'm wondering what kinds of grief have been part of your life journey.

Steph: Grief definitely shows up a lot in my life. I've dealt with a lot of loss. A lot of loss. My mom died when I was seven. She was an alcoholic and she died in a car crash. Well, she didn't die in the car crash, but she was drinking and driving and was in the intensive care unit. And eventually I lost her life a couple weeks later. And so I dealt with that a lot as a kid. I. I was a very angry kid because I was so confused. I didn't understand why, you know, a God could take my mother away from me. Even though I didn't live with her, My grandmother raised me. I only lived with my mom, like, the first year of my life. So my grandmother raised me, but I still felt like, why could this happen? And so I was very angry child. It was such an angry child. I'm so confused. I'm so hurt. I was dealing with so much pain. My grandmother, like I said, she raised me. I was diagnosed with hypothyroidism at 14, like I said, and my grandmother was there. She helped me through that. I lost all my hair that year. My freshman year in high school, I lost all my hair. And I had to. I was getting bullied severely, and I had to start wearing wigs. And she took me to my doctor's appointments, took me to get my blood work done. And then when I developed an extreme phobia to needles, she paid for my therapy to get rid of that phobia. And so grief for me comes up in different ways. Grief came from me losing my mother and then eventually losing my grandmother at 17, losing my uncle Berto and my Aunt Veronica and my adult years. And it showed up for me in the form of bullying. I was being bullied severely for my illness and for me losing my hair. It was showing up for me in anger, in sadness and frustration and confusion. It was showing up for me in church, in school, at home. It was showing up all over the place and in different ways and in different forms of emotion. So, yeah, grief has definitely been part of my disability journey because a lot of my. A lot of who I am is tied to my grandmother and is attributed to my grandmother. And she was there when I was diagnosed and there whenever I was going through the height of my depression as a teenager and the height of my bullying and the height of my, like, confusion of learning, what is this illness and is it going to kill me? Am I going to be okay? What's happening? So grief came up a lot for me as a child.

Mandi: Thank you for being so transparent and sharing, and I'm so sorry for all of the losses that you shared. I can't imagine what that's like, especially at such a young age, to have loss of people who are so close and critical roles in your life. I know in my experience, a lot of the loss that I've experienced has actually been around disability. And just the fact that some of my closest friends, including one of my, my best friends, passed away and a lot of it was from progressive disabilities and different kinds of conditions or the complications that can come from lower immune health because of disability. And so that was definitely really hard for me. And I think sometimes we, as with disabilities, do experience loss and death and that type of grief younger and often more frequently than many non disabled people do. And so I would love to understand a little more how your grief has intersected with your disability experience.

Steph: Yeah, like I said, I, I was going through so much as a kid. I was very sad and very angry and especially when my, when I was diagnosed with hypothyroidism at 14 and I lost all my hair, I was bullied heavily for it and I hated myself. I was like, why, why is my body doing this to me? Why does my body hate me? Am I okay? Like I'm, I'm going through so much, like my body doesn't want to work for me. The women in my, on my mom's side of my family are, were early bloomers and I had not gone through puberty yet. And that was the thing that my family noticed. And so they took me to my pediatrician and she recommended a specialist. And till this day, I have not had a menstrual cycle, not once in my life. And I will never have kids. And that is probably one of the biggest things I will grieve because of my disability. I, I've always wanted to be a mom. And that is one of the biggest things that I will not be able to have. I will never be able to have my own child, my own biological child.

Mandi: People don't think about that a lot. I recently did an episode on parenting and it's really interesting to see kind of the two different spectrums. There are people who are able to have children who have disabilities and the stigma that comes with that. And then for folks like yourself who may be on the outside, do not appear to have a disability because it's a non apparent disability. But to understand the grief that you experience in the fact that your disability does prevent you from being able to have children or the other types of losses that you can experience from having a non visible disability and how that might even make you feel more alone because people assume that you can or that you're going to, you know, live the same life that everyone else does. But your condition, while not visible, does impact Your life in real powerful and meaningful ways.

Steph: Yes.

Mandi: So what has helped you survive grief on days when explaining it has felt impossible?

Steph: Music. Music has definitely helped me survive grief. And it's connected to my grandmother. My grandmother and I would blast music in our house. Like Spanish music, like old school rock and roll. Like all kinds of music we would blast in our house. And it would be on a Saturday morning that was our cleaning day, as we would just like dance and sing around the kitchen and. And vacuuming and mopping and just singing and dancing and laughing. That was our bonding day where we would just listen to music and laugh and sing and dance, and it was just so much fun. So whenever I am having a bad day, whenever I am ridden with grief, whenever I'm missing my grandmother and my mom and my family members, I listen to music and I turn on. I plug in my headphones, but I turn it up way loud so I feel like I'm back in my grandmother's kitchen dancing and singing and laughing and, you know, singing into the mop. That's beautiful.

Mandi: I. I have that image. I can see it like, that's such a beautiful image.

Steph: Yeah.

Mandi: What does community care look like when disabilities and grief are invisible?

Steph: Well, this has been said before, but the world is not built for people with disabilities, and it's even more not built for people with invisible disabilities. There's even less information and support with people with invisible illnesses. You know, the ADA talks about people with visible disabilities, but it's not necessarily clear for people with invisible disabilities. There's so much stigma, like I've talked about before, you know, people make comments, I'm lazy, I'm faking it. Like there's so much stigma with disability in and of itself, but especially with invisible disabilities, there's a stigma. So I just feel like the world was never built for us. It was not built for people with disabilities, period. And that's really a shame because contrary to popular belief, we can contribute to society like any other person.

Mandi: Yeah, absolutely. And I appreciate you're already kind of talking about systems and how the system can really fail. And I think I get asked a lot about disability rights versus disability justice. And this is where I think that distinction is strongest. When we look at things like the ADA or even fights for disability rights, it still leaves out a large group of people with disabilities. And a lot of data collection and surveys don't even address non visible disabilities. They don't address things like mental health conditions or chronic illness. And so sometimes it feels like the protections, even from a Rights based framework. The protections are not really there because you have to go through so much trying to prove, hey, I have this disability and here's how it affects me. And that must be really hard. So where do systems fail people with non apparent disabilities, especially during times of grief? Where have you felt the system has failed you?

Steph: So I live in Texas. Texas is by definition a red state. And I have applied for Medicaid and Medicare the past 10 years and I have not once got in because Texas is not expanding their Medicaid. The only way you can get in to Medicaid is by way of disability or if you are an elderly person or some other way in, but you cannot directly get in. And speaking of disability, I have applied for disability three times now and I have not gone in. I have tried finding a disability lawyer and that has not worked. So I have done a lot of trying to get myself these in these systems that are in place. But there are a lot of barriers. My best friend Lacey has lupus and has arthritis and has Meniere's disease and a few other autoimmune illness. And it took her many years to get into disability because she kept getting denied and denied and denied and denied because she is able bodied or she presents as able bodied just like I do. And I feel as though people in office want to claim that there are so many, so many ways for people with disabilities to get what they need. And there might be, but there's also a lot of barriers and a lot of misinformation and stigma around people with disabilities and especially people with invisible disabilities.

Mandi: Yeah, no, I agree. And I think we're in a system right now where services and benefits and supports are really being attacked and significantly reduced for people who need it. And what we see tends to happen is people who misuse these resources make it even more difficult for people like us who do really need these resources to access them. And that is really unfortunate. So I appreciate you bringing light to that. I do want to talk a little bit about resilience because you clearly are someone who has demonstrated a lot of resilience and being able to come through all of these challenges that you've had. And I hesitate because I don't want to say overcome, because they don't think that's what your story tells. It's not a matter of overcoming, but you've learned how to live with your disabilities and the grief experiences that you've had. So I'd love to know how you define resilience on your terms. Not even in the way that society does. But how do you define it?

Steph: I feel like I'm a fighter. I will push myself to my limits but also give myself grace when I need it. If I need rest, if I need a break, if I need self care, I will give that to myself. If I feel, if I'm determined and I'm, I'm going to push myself until I can get what I need or get what I want, I'm going to advocate for myself. Resilience to me is, you're right, not overcoming, but it's coming through. It's continuing to push through all of the pain and all of the hurt and all of the stigma and doubts and anything that's going on in your world, disability or not, and continue to push through and continue to live life and fight for what you want. To me that's resilience.

Mandi: I love that, the fighting for what you want. And I really appreciate you talking about having that self grace. I talk a lot about that, especially here on this podcast where rest is a form of resistance. Joy can be a form of resistance and it doesn't always have to look the same, doesn't have to look like productivity or you know, being an activist in the middle of protests. Like our form of protest sometimes is just taking care of ourselves. And I really love that you aligned with that too. What is one thing you wish people would stop assuming about non apparent disabilities?

Steph: That they are lazy, that they are picking. And I've said this like three times now, they're, they're not lazy, they're not faking it, they're not trying to get extra attention, they're not just doing it for social media, they're not doing that at all. They have disabilities that are internal, that are inside, that only they know and feel. They don't. Maybe not. They may not have external disabilities like visible disabilities, but they are going through so much internally and instead of putting people down or making assumptions, maybe ask them, hey, are you okay? Do you mean anything? Can I get you something? Like maybe in turn instead of judging, instead of judging or making assumptions, ask them directly. I think they would, I think you would gain a lot more respect that way.

Mandi: I appreciate that and I think that is a best practice across the world, whether you have a disability or not, just having compassion for each other. And I think we again are just in a climate right now where that is not talked about enough. It's not practiced enough. Like we really need to have compassion for each other and just be willing to ask, are you okay? And how can I help you. So I appreciate that because that's such a practice that I think could really go across the board for anyone. So my last question for you, what I'm hoping to leave our listeners with is if we do have a listener that feels invisible right now, what would you want them to hear?

Steph: I feel invisible too, literally all the time. I want you to know that you're not alone, that we may be strangers, but I'm here for you. I would like you to practice self care. I want you to advocate for yourself. I want you to set and maintain boundaries. And lastly, find your tribe. Find the people that are going to love you and going to understand you and are going to support you no matter what. And it's okay to feel what you're feeling. You're valid. Your feelings are valid. Just make sure you're taking care of yourself and make sure you find people that love you and support you.

Mandi: Steph, thank you so much. I want to leave us on that. I think that's such a powerful way to end our conversation and I really appreciate your story and your willingness to share so openly in this on this platform. And so thank you so much and thank you for continuing to be an advocate and for your continued compassion to people even with your own struggles. The fact that you put yourself out there and are available to meet people where they are is really special. So thank you so much.

Steph: Thank you. Mandi.

Mandi: Thank you so much for tuning in. We covered some important and possibly trauma inducing topics. Please remember to practice self care. If this episode has left you feeling heavy, I have a quick gratitude share and a few exciting announcements. I first want to thank everyone who purchased and or shared the digital reaction sticker pack. Seeing the stickers on social media and in messages means so much to me. While the sticker pack is no longer available, I'm excited to announce that I'll be launching something new in just a few weeks that will get all my listeners who are in the dating scene ready for your spring flings. I can't wait to share, but you'll need to stay tuned to find out more.

March is going to be a big month, not only because of my new product release, but because I've joined the Podcastathon, the world's largest podcast charity initiative bringing together podcasters globally to raise awareness for charitable causes. Be sure to tune in on March 15 to find out which organization I've chosen to uplift and how you can get involved.

Finally, come back next week for my first ever interview with a non speaking woman who will expand your understanding of communication. And remember, disability, liberation, love are always beyond beautiful.

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