03. Out of Sight but Still in Mind: Hiding Your T1D Diagnosis

Ever hide something that was at the core of your existence? I did. It was my type 1 diabetes diagnosis. A secret that was subtly gnawing away at my mental peace and physical health. Until one day, I decided to own it. To live openly, to advocate, and to educate others about this condition. That decision changed my life. In this heart-to-heart conversation, I share my transformative journey from hiding to owning my diagnosis, the sense of liberation it brought along, and the profound impact it had on my relationships and wellbeing.

Tune in as we delve into the empowerment that comes with self-acceptance and advocacy. How living openly with diabetes and using its technology can help shift our perspective from merely surviving to thriving. We'll also talk about the fashion statement our tech can make and the inspiration it can spark in others. And because I believe in the healing power of community, I'll share a link to a support group that I've created on the Discord app for our podcast listeners. An open platform for us to share, learn, and support each other. So join us as we celebrate our unique challenges and use them as superpowers to make a real impact in the diabetes community.

Join Our Support Group on Discord

Transcript

Speaker 1: 0:01

Welcome to the Type 1 Unscripted Podcast. My name is Sean and we are pulling back the curtain on the true experiences of life with type 1 diabetes. Together, we will explore the highs and lows of living with type 1, sharing stories of inspiration and triumph, educating and learning and, most importantly, fostering our amazing type 1 community. As a reminder, anything you hear on the Type 1 Unscripted Podcast, or any episode, should not be taken as medical advice. So before making any changes to your diet, insulin or health care plan, please consult with your physician or medical professional. Welcome to another episode of Type 1 Unscripted, and today's topic might be a deep one, but it's going to be a good one, and we're talking about the whole idea of concealing your diabetes, hiding it from the world, your friends and your family, and why that's probably a dangerous thing to do, both physically and mentally. Thinking back to whenever I first got hit with the whole diabetes thing, my first knee jerk reaction was to keep it quiet, keep it hidden. I didn't want another label. I didn't want people to see me giving myself insulin shots because I was fearing there would be judgment that would come along with it. Oh, maybe he has a bad diet, maybe it's his weight, whatever it may be. I just did not want to deal with it. I didn't want to have to explain it to anybody and I thought keeping it to myself was going to be the right move. Right? I thought that was simple as that. But, as you know, life isn't simple, life isn't straightforward, and the more that I try to shove diabetes into this nice little box, the more I felt these barriers go up. I mean, you know what it's like keeping a secret right? Put yourself in this situation for a second. You're at an event with your friends or your family, your loved ones, whatever it may be, and you're laughing, you're cutting up and you're trying to be this person that everybody thinks you are on the outside, but on the inside, you're constantly thinking about what they're thinking about, and if they was to know something about you that you haven't shared with them yet, how would they react? And while it seems like that would be a constant weight that you would carry, that weight will get heavier and heavier. I promise you that.

Speaker 1: 2:52

And here's the real talk. Having type 1 diabetes, it is a piece of us, it's a part of you, it's a part of me, and while it's not the whole picture, not even by a long shot. It's kind of like having brown hair or blue eyes, or maybe you're the world's worst dancer, I don't know, but it's a part of your story. It's not the entire book, but it is a part of your story and I believe that when you are genuine, authentic and just real with yourself and real with the world, that a beautiful connection will happen. You will find people and experiences and this sense of community and I promise you it feels really good. Now don't get me wrong. I'm not saying you need to shout your diabetes status from the rooftops or wear this giant necklace and sign around your neck, but I'm just saying maybe consider what it's like to let your guard down or be vulnerable for a minute and feel that freedom and let the world see their real you, type one, diabetes and all. So we're going to break down the negative impacts of keeping this secret and then we're going to talk about the positive impacts of letting it go and what that can look like for your mental health, emotional health and even your physical health. Have you ever noticed how sometimes the things that we do to shield ourselves can end up backfiring a little bit? So I want you to think about that as we continue this discussion.

Speaker 1: 4:44

You have type 1 diabetes and there is no denying it's challenging. It's something you're living with. You're managing it daily. Now toss in the effort of keeping it on the down low. On the surface, it probably seems like a good idea Less questions, less judgy looks and you might even be thinking less stress, but is it really? One of the best analogies I could come up with when I was putting this together was you know how, when you have your phone and you open up app after app after app and you have all these apps running in the background and it's draining that battery Same concept here. When you're in that constant state of I hope they don't notice or what if someone asks, you are literally consuming energy under the surface and that will translate to anxiety 100%. It's very sneaky and it kind of creeps up on you, but I promise you it's there Now.

Speaker 1: 5:44

Now that we talked about that, let's look at this angle. Maybe consider sharing, being open about your journey with type 1 diabetes. By doing so, you will kind of free up this mental bandwidth. No more cloak, it's just you and yourself out there, and I know that sounds scary. I really do, but you might be surprised that by most people and you might be surprised that most people they're going to be understanding and a lot more supportive than you might think.

Speaker 1: 6:22

Type 1 diabetes on its own is a handful. We all know this. It demands attention and care and understanding and by taking this path of being open, you are really giving yourself a break less mental juggling, less what ifs and more of, I believe, genuine connection of those around you. Look, at the end of the day, we all have our things, we have our challenges and, with type 1 diabetes or anything else, really being upfront, being open and being honest, it really is the easiest path. It's less of a mental workout and more genuine interactions and, honestly, we could all use just a little bit more simplicity in our lives, especially because of what we do on a daily basis. So what are we missing out on by keeping this clothes off from the world? Well, one of the biggest things is a support system, a support group. How can people help you when they don't know? I Can't stress this enough. You will probably hear me speak on support and support groups numerous times on these podcast, and that's because I believe they are paramount to your overall health and and well-being. In fact, that's why I created one to go along with this podcast, so we could be there to support each other here in this community.

Speaker 1: 8:00

And when you're grappling with something like type 1 diabetes and the impact that it can have on your life, that weight feels really heavy. And when you're doing this solo by yourself, that's a very daunting task. It's kind of like trying to lift a Heavy piece of furniture all by yourself. Is it doable? Yeah, maybe, but is it easier with help? Absolutely. It is the beauty of letting people in and building that support system and how that amplifies your, your strength and I don't just mean physical sense, but your mental and emotional strength. When you're having a rough day, knowing that there is someone out there who gets it or, at the very least, tries to understand, that is going to be a game changer for you. You're going to feel love, you're going to feel appreciated Again.

Speaker 1: 9:01

Our goal is to reduce anxiety and again, it's not always about venting or seeking solutions. Sometimes, I believe, it's just about the presence of someone else, a nod or a shared look or a simple hey, I'm here. And the best analogy that I can come up with when it comes to this is I don't know about you, but when I'm like at a grocery store or something and I'm pushing my buggy down the aisle and someone passes you and they just give you a smile or a high and Kind of get that warm feeling inside. Now imagine that warm feeling amplified a thousand percent, that unspoken connection or solidarity. It will reinforce the fact that you are not alone in this battle.

Speaker 1: 10:01

Now, if you heard my last episode, you will understand that, for me, being vulnerable is hard. Opening up is hard, especially when it's about something personal, aka type 1 diabetes. It's not always a walk in the park, for sure, but the feeling of being understood and supported and cared for is just. There's those days when you are ready to give up, and those are the moments that will save you. Save you from drowning in emotional stress, if you will. So I'm not only going to encourage you to open up about your diabetes, I'm going to encourage you to get support for your diabetes. Join a support group, let people in, and not just people that you don't know, but people in your inner circle, in your life as well. So here's another big reason why I want you to be able to open up about your journey and your health, and that is as a type 1 diabetic.

Speaker 1: 11:10

You are given a special power and that is to advocate, to help people understand and learn, because there is so much misinformation that surrounds diabetes. Maybe it's type 1 versus type 2, maybe it's just diabetes in general, and I promise you you can probably relate to this. You have probably have heard these stories or maybe this has happened to you, I don't know. But the question is like oh, did you get diabetes from eating too much sugar or one of my personal favorites? You don't look diabetic, because you know how can someone look diabetic? I don't know.

Speaker 1: 11:53

But the thing is, these comments, as frustrating or wild as they sound, they usually come from a place of let's call it misguided knowledge. It's not always malice, probably more or less lack of understanding. I said the same thing recently on one of my TikTok lives. Someone asked me the question about does your family support you? And I believe that they really do. They really do, but there's a difference between lack of support versus lack of understanding, because they don't really know what it's like to walk in your shoes, and what I do is try to help them see what it's like as much as I can.

Speaker 1: 12:39

Again, by advocating and educating, by sharing your experience and answering questions, and even those wildly frustrating, oddball ones, we are combating misinformation. So every conversation, every story you tell, every actually it doesn't work that way moment will eventually chip away at those misconceptions and the negative stigmas. And doesn't it kind of feel good to know you're kind of setting the record straight? I know it does for me, but once again, it's not about like the lectures or the big presentations about type one, those little hey, did you know? Moments can go a really long way, and the more that we can keep being warriors for the T1D community, we are doing some really powerful work, something that couldn't be done if you kept this all to yourself. And that leads me to another point, and that is the whole idea of empowerment and self-acceptance. Now, I know that sounds like one of those like self-help buzzwords and I apologize, but it's really important and it's really true, and I'm going to explain why.

Speaker 1: 14:04

Often we are in this autopilot mode, just handling what's in front of us, dealing with a day-to-day immediate tasks the next meal, the next bolus, whatever it may be and we get in this grind. You know the nitty-gritty grind. So when we can open up about type one and embrace it. It has a weird way of nudging us from that grind into this rhythm where we're not just managing it but we're kind of making it a part of who we are, and it gives you the opportunity to accept that this is who you are. When we lean into this quote-unquote empowerment, if you will and really accept ourselves, those highs and lows and all of the in-betweens, there becomes this shift. Suddenly you're not so much in survival mode, you are now in thrive mode. You're not just reacting, but you're literally owning it.

Speaker 1: 15:14

And this isn't some miraculous like transformation or some light switch that just gets turned on. It's about this gradual process, acknowledging that type one is a part of your journey, not the entire story, like we said at the very beginning, but it is a part of your journey, it is who you are. So the more that you embrace this, the more that we can lean into self-acceptance and realize that you know what we've got this and yeah, there's so much more to our narrative, but we can thrive which will, in return, give you this sense of control when things feel out of control. So I've got one more bonus pro tip I want to talk about that you can do when you come out from behind this facade, and that is embracing your tech and wearing it proudly. Now, this is not for everyone, and I do understand this. So maybe you're one of those people who you don't hide the fact that you have diabetes, but you do hide your CGM or your Pomp, and if that's you, that's okay. But I am going to encourage you to give this a shot one time, and here are a few reasons why.

Speaker 1: 16:36

Number one is it can be a fashion statement or a conversation starter. This is the fun part of it, right? Because kind of like glasses or braces or any other accessory that you might feel is maybe a hindrance, this can be fun. You can decorate them, you can accessorize them. I've seen people on TikTok who will get the colored stickers and skin grips and all of the fun stuff so they can pair it with outfits for concerts. It was really big for the whole Barbie thing and it can be really fun to show off your personal style.

Speaker 1: 17:13

Embracing the technology and wearing it very proudly will transform it from this medical necessity and make it fun and unique accessory that can really stand out, and I think it's a really cool opportunity. It's also creating educational opportunities. So when other people notice your CGM or Pomp and this is kind of going back to the whole advocating part that we talked about it opens up those conversations and it creates opportunities to educate and raise awareness. You get to answer questions, share stories and really again maybe demystify or debunk diabetes for people. Now it also can be an inspiration to others. So think about it from this point of view Seeing someone confidently wear their CGM or their pump can inspire others, especially those who are newly diagnosed and struggling with acceptance.

Speaker 1: 18:13

It sends a very powerful message that you don't have to hide or be ashamed of managing your health. This is again embracing who you are and you get to help others do so in the process. And, last but not least, I believe that this ultimately can help affirm your self-acceptance. For example, when you wear these devices proudly and open and out in the public, you are kind of openly testifying that you are embracing every aspect of yourself, including the challenges. You are reinforcing the idea that while type 1 diabetes is a part of your life, it doesn't define your life. Instead, it becomes a symbol of resilience or strength and, ultimately, self-care.

Speaker 1: 19:15

Now, earlier in this episode and I think my very first episode, you heard me talk about support groups and how I feel about them and how I believe they are super important, if not a necessity, to anyone who is dealing with type 1 diabetes.

Speaker 1: 19:33

So I'm going to encourage you to join one, or join multiple ones, and I'm going to put a link to one that I created to go along with this podcast and just to be a good support group in general. In the show notes it is on the Discord app. You can download it to your phone, your Mac or your PC. It's super user friendly and we're having a lot of fun in there supporting one another on our journeys. Now, as I bring this episode to an end, I want you to remember that, as I encourage you to be more open with your diagnosis and your story, remember that it's for you, but also for everyone else. We are all in this together, so be real to yourself, lean on others and use this superpower that you have to make some real noise in this community. I love you guys and I will see you on the next episode.