Episode 52 Transcript

Published: Thursday June 20, 2024

Lyme Disease Awareness | Kimberly Daya

From Misdiagnosis to Embracing Nuance – An Inspiring Story of Overcoming Invisible Illness


Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience and finding success against all odds. We are creating a collective community that believes that all things are possible for all people.

Open hearts. Clear paths. Let’s go.

Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson.

I think I’m going to start with a quote. A lot of disabilities are invisible, but our reactions to them are not. There’s a lot of disabilities that are out of sight, out of mind, they’re invisible, they’re non apparent. And I found this statistic that there’s an estimated 133 million Americans in our country that suffer from some type of chronic illness.

Or hidden disability. And that equates to literally almost half of our population. And this conversation is picking up steam like crazy in our society and the workplace today. It’s coming across my desk. Non apparent versus apparent disability. And I like to tie in the combination of both because the non apparent pieces of my disability has been literally the hardest part.

And our guest today is Kimberly Daya.

So I was on Kimberly’s podcast last week. It is called Humanity Unlocked. If you have not seen it, you, or heard it, or both, you need to go and check it out. She’s a mom and a wife and she was also diagnosed with Lyme disease and that she’s been kind of adapting to her new normal over the past 10 years and There’s a lot of stigma that comes with non apparent disabilities, and this conversation, , is kicking up in our society as it should be.

So Kimberly, thank you for being so willing to come and talk about your everything.

Kimberly Daya: Thank you. I’m truly grateful. So thank you so much.

Alycia Anderson: So I think we just need to start with, whatever you’re comfortable with, sharing your journey with, maybe pre and post diagnosis and how that has impacted your life.

Kimberly Daya: So in 2007 is when I initially knew that something had gone horribly wrong. I was only married a year at that point to my husband, Mark, and just to, to say it very plainly I woke up one day and my legs were weak and almost like, For people that, and I went to the gym a lot back then, like five days a week.

So I just thought, gosh, my legs are weaker than usual. I don’t remember working them harder than I’ve ever worked them, but you know, okay. And, but what’s, what was different about this time was they got weaker every day.

I was at work and I was at my desk chair. I was a property manager at the time. And I went to stand up and my, I couldn’t, I kept falling back down. Like my legs wouldn’t hold me. So my assistant said who is also a good friend of mine still to this day, she said we got to take you to the ER, like something’s wrong.

This has been happening. It’s been getting worse. It could be and she just threw out could be MS. And I thought, and I was like, well, what is, I was 28. So never had any health issues to speak of. And I didn’t even know what MS was. And so she, And my maintenance manager wheeled me out into my car in my desk chair because I, couldn’t walk and so long story short, they did they run all the tests.

I’m there for, I think, two nights and nothing was conclusive. So by the time I left the hospital, I had improved. So I just thought, Oh, okay, that was weird. About a month later, maybe a few weeks later. It came back, but it came back in my arms. So I was like at my desk writing and I noticed that I couldn’t hold onto my pen.

And so then that was the next thing. And then it just kept snowballing. So then it was like. Not just my grip, then it was my arms. I couldn’t raise my arms to like wash my hair or like put my top on her. And then it was my, then it would go back into my legs and then it was my legs and my arms. And so what ended up happening was we started to see a pattern of two weeks on, two weeks off.

And so this all started at the end of July. And by December I was fully. Immobile and I went out on disability, like short term disability to try to figure out what was wrong.

And in the interim I had gotten pregnant with my who’s now 16 year old daughter. And so, I went into like a little bit of a remission. The symptoms were alleviated because when during pregnancy, you’re with an auto immune illness, your immune system is suppressed during pregnancy because everything’s going to the baby. So the autoimmunity of this illness went dormant, so I had energy by five months in, I was doing great. And then a month after she was born, it all came rushing back, but like with a vengeance.

Alycia Anderson: Wow. I haven’t whole heard that whole full story.

Kimberly Daya: So initially I was diagnosed with MS a year after that first visit in 2007. So in 2008, my neurologist said, this is ms, we’re gonna treat you for ms. So from 2008 to 2013 I. was diagnosed and was treating with injectables, Copaxone to be specific, but for MS taking Cortef, which is a corticosteroid.

And then in 2012, they started the conversation of Lyme disease came up.

Alycia Anderson: Why do you think that there’s so much misdiagnosis, but number two, the stigma, even in like the medical field about like kind of discrimination and difficulty giving care because of the diagnosis and the symptom.

Like, am I going down the right track with that? Cause I started reading about it. I was like, Whoa, 100%.

Kimberly Daya: Lyme disease is difficult to diagnose one because the testing is terrible. It’s just it’s not good. And I don’t know why it’s so awful, but it is. It’s terrible testing. And if you want to get really accurate testing you have to pay out of pocket and go to a specialty lab to get that done. I ended up going to IGENIX, which is where my diagnosis is. I got diagnosed with the Western blot and the Eliza tests and that are typical allopathic system does like it.

I was negative. So, but that’s part of it is the testing is awful. And I think the other aspect of it where physicians really treat us not well is because A lot of patients who have done their homework, like myself and many others who are just desperate, they want to get well, they want answers, will come in desperate and insist this is what they have, and insist that they do more about it, and the physicians don’t like it.

It’s just. Like I’ll use one of the lines you said, it’s like salted with diversity, like it’s easy. It’s not an easy thing to navigate. But, uh, it’s what, there is such a thing as Lyme literate doctors, LLMDs, who there’s actually practices that they open up to because they are professionals at knowing how to test, knowing how to treat, knowing how to treat each one individually.

Alycia Anderson: I know you and others deal with a lot of judgments and, Assumptions and unknowns about your chronic illness.

Can you talk a little bit about, , how this has shaped your life and your perspective?

Kimberly Daya: In the beginning, it was such a shock to my system when I realized that this is chronic, that this isn’t going anywhere. And this was like prior to even social media.

So like Facebook came out, I went online, I should say at Facebook in 2009. And my Facebook memories I can see by 2010, I am desperate. I’m shouting from the rooftops because I am so alarmed that this is happening and I’m talking about it and I’m posting about it and I’m posting pictures of myself sick and I’m like, like WTF like this is ridiculous.

I don’t understand. And when you’re in that level of disability, and then the world around you just keeps moving. And you’re gone and you’re left behind and you’ve lost your job.

And it’s just like all these things for me. It was a little bit hard after a couple of years, when you realize that people lose, I don’t want to say they lose interest, but It’s just like anything else, like the conversation gets tiring for people to have, and it’s hard for me to have, I don’t, but if I stop talking about it, then how am I ever going to get well.

And then at that point I just said, I need to learn how to deal with this internally. So I just kind of took that as my cue to like, this is something that I’m on my own journey here.

That’s the isolation of disability, that’s ableism. One word that I sticks out of what you just said to me was judgment, You say something like that the difference between empathy and judgment is knowing, the story, the path, and trying to understand, somebody else’s journey and what they’re going through.

Alycia Anderson: Can you speak to that a little bit?

I think that people’s tolerance in their their empathy Uh, they have their own lives.

Kimberly Daya: So I can’t expect somebody to react with the same fury that I have. And I think that realization was hard. I think for me, because of what I’ve gone through. My empathy has really increased.

I have learned because I had so much experience with feeling like nobody was putting themselves in my shoes. I am constantly reminding myself to put myself in other shoes

So I think that a lot of, one, one of the things that a lot of people with like chronic fatigue, one of the main issues that a lot of us have is like, you say you’re tired and people will go, Oh, me too.

Or. Or we’re all tired or, and this is like ude fatigue. This is a completely different kind of fatigue. That is. It is. If you think about like being on sleeping pills and having the flu at the same time, it’s every, it’s, it is so all, it’s like comparing a normal headache to a migraine. It’s like you can’t.

So, it, that gets a little bit frustrating because people think that they know what you’re going through and there’s no and that’s fine, except it can feel like they’re minimizing your experience.

Alycia Anderson: Or they actually are.

But I do think that’s some of the advocacy that we’re doing and sharing our stories is understanding that looking at the world through an able bodied lens is not like the only way to go. And I think that’s a good segue to the conversation and the distinction and what you kind of face with the distinction in itself between a visible disability and a non apparent disability.

And there is a lot of. judgment placed on you. You and I have talked about that, like how has that been?

Kimberly Daya: I think that obviously, it’s easy for someone like me to blend in the crowd. Obviously, that is uh, I guess, I guess if you want to look at what is the good, what is good about having a visible disabilities because I don’t have to talk about it.

I don’t have to deal with people, there’s so much that you have to encounter every day that I don’t, so they’re obviously there’s a discrepancy there’s a difference there. The downside of it is that , if I have to explain to one more person, why I don’t, why phone conversations are hard unless we schedule them ahead of time.

There had to come a point where I had to stop caring and I had to start thinking about what was best for my own health and stop worrying what people thought about me. And that was freeing. That was freeing. That took a while though. It took a long time.

I know that people with hidden disabilities. can hide them, but sometimes that hiding them can also be a detriment for you to really, truly be who you are because you’re being placed in this like able bodied, I’m air quoting normal situation when you’re really masking a lot of things that are underneath that are really hard to navigate your life.

Alycia Anderson: And so like, how can we tell the general public that I have an invisible disability. I’m parking in this , disabled spot in front because when I come out of Target, my limbs are exhausted. What is the message to the judgment? How do we do

Kimberly Daya: something I talked about in my Ted talk that I did in March that hasn’t come out yet, hopefully soon is the idea of like having how we all have a point of reference.

We only know what we know, like we only know things based on our own experiences with them. You’re going to have a very unique point of reference. And approach to life and how you see things based on your experiences. Same with me and everybody, uh, race, sexuality, all that plays into our own point of reference and the way we see the world and the way we see ourselves in the world.

And I think that if we stop to look at situations. Instead of looking at through the lens of our point of reference start to try to see it from their point of reference. I think that’s where empathy. I think comes from putting yourself in their shoes. I also one of the things I mentioned in my TED talk is Like a correlation I made was we all know what it means to like hindsight’s 2020 to make a decision that you thought was good at the time.

And then fast forward five years and you look back and you go, wow, what a terrible decision that was. Sometimes you don’t know what you don’t know. And And if you can sort of look at it that way, like, have you ever made a decision that you thought was good or that you thought was right? And then realized it wasn’t, it’s the same thing.

Like, there’s no way to, like, to understand something that you’re not, that you had, don’t have no experience with that. You’re not navigating in the world the same way. And so, I think my advice is to practice listening.

Alycia Anderson: Give me some of the characteristics and some of the power that’s come out of this diagnosis and who you are.

Kimberly Daya: And this is where it gets really interesting because I really cursed it for so long and I hated it. I hated my wheelchair.

I never, I told you, I never wanted to leave my house. I really, because it was like saying goodbye to the old me every time I had to rely on help and the wheelchair. And it was just, it felt like such a departure from who I’ve always been. So I spent years in isolation,

and I think that the years of isolation, uh, self imposed isolation, uh, caused me to slow down long enough to hear my own thoughts. To feel my feelings, to become more self aware, to see the aspects of my illness that were positive. I’m home with my kids now. I was such, I was so driven and motivated when my kids were a little that I would have missed so much.

So I look at it as a gift. That’s the good app. That’s a good. Part of my illness it’s given me I also think that it’s made me a better wife in weird ways,

I am very available to be there for him in his crazy, busy real estate broker life. And he is always been there for me and that’s never from day one. He’s been a person that’s just very Emotionally available. And. Eagerly wanted to meet lean on him and was okay with it.

So I’ve allowed me to reciprocate that. So there, and I we actually joke about it now. It’s like, if I wouldn’t have gotten sick, do you think we’d still be together? Only because our connection wouldn’t be as strong. What I went through doesn’t come close to what most people have to deal with. This is a life ruiner Lyme disease and. Any real autoimmune illness. It will completely change the trajectory of where you thought you were going. So, yeah. And I realized that.

Alycia Anderson: And I think you’ve turned it in though, to something really beautiful and positive, and you do have a beautiful marriage and you can tell the love between you and your husband.

So let’s talk about the podcast. I like the first thing I want to know is why the title and the theme humanity unlocked.

Kimberly Daya: It’s interesting because during the divisiveness that occurred the last, so in name, mostly 2020 to 2022, I found myself, uh, just paying attention to how to behaviors, just behaviors, just across the board how people reacted and just taking note and watching like When something stood out to me and what stood out was that people were each picking their sides and their teams or whoever they aligned with or whatever they aligned with, whatever ideology or person or president, whatever.

But what I realized was there was a couple times when somebody would make an allowance, like this side was the devil, or these people were the devil, but this person who’s also on the side, they’re okay. Why are they okay? Because they saw their humanity. And I’m going to give you an example. So example, I always, there’s many others, but this is the example I always use.

I may have already shared this with you. Cheerleading, uh, cheer gyms. These are a lot of, I’m going to stereotype just the, where I’ve been, this isn’t, this is not nationwide or across the board, but the one, the ones that I know about predominantly, rich, it’s a very expensive sport, rich, white, upper class.

Women, a lot of them, very Christian, nothing wrong with any of that. In fact, I love, I’ve never encountered anybody from a cheer gym that I didn’t actually enjoy, uh, their company, the, where they might align would be something different than some of the coaches, a lot of these coaches were male and gay, they were the best coaches.

And these moms. Who at that time would have been or were against whatever they were, these male coaches were for, they loved them, they’re the best coaches, they knew them, they’re the ones that helped their daughters progress too, and so they made an allowance because they saw their humanity, and they suddenly, whatever ideology it was that they were against, and this person was a part of, They made it, they were okay with that person and it was all because they attached humanity to them.

And listen, I am I’m a white upper middle class Christian woman. So I’m not, in no way am I against any of these women, but I noticed that a lot of people like myself will choose a side and not see the humanity of the other side. And where I’m coming from is like, if I can bring on people that are not like me as much as possible.

And showcase their humanity so you can actually see past whatever label you want to put on them. We may realize that we are more in common and more like them than we know. And I think that’s was the mission from the beginning. I think that people judge things they don’t understand. In the minute you hear somebody’s testimony or their story or whatever, suddenly you might feel differently.

And so it’s always about seeing the person as a person, not an issue or a label. So that’s where it comes from.

And a lot of the guests I have in my podcast feel like nobody understands. And while some of us may never understand, at least I’m giving them the platform to, to try to allow people to step in their shoes for just a second and see their humanity in their story.

Alycia Anderson: You’ve created a platform for people to share their story to remove judgment. And, Invite and invite in empathy and understanding, and I think that comes from, the outsider looking in, it comes from your path of diagnosis

And all of the things that you’ve gone through to get some understanding of who you are today in this moment, which is amazing. And you’re getting that.

Kimberly Daya: Yeah, it’s really hard when people don’t see your intention. Like you’re doing something they don’t agree with, and we’re not always going to agree, and I always say that.

But if you could just step back and Look at the what this person is intending like what is the intention behind it and see it from their intention. You may still not agree, but at least you’ll see the intention and you’ll understand that at least are coming from a good place.

Alycia Anderson: You’re doing really good work with your podcast it’s very well done. It’s very well done. Okay. Did we miss anything?

Kimberly Daya: I don’t think so.

If you want to come on and tell your story, look and see what we’ve already covered. And if we haven’t. Reach out because there’s really not much I won’t touch.

Alycia Anderson: the title of your Ted talk too. What is that? So everybody can hear it so they can watch it when it comes out.

Kimberly Daya: It’s called dismantling judgment and embracing nuance, but it’s not up yet.

Alycia Anderson: Okay. So we will be watching for that. Congratulations on getting a TED talk. Thank you so much for being so vulnerable to share your story. I think the story is going to impact a lot of people.

So, all right, it’s the time. So we end the show with pushing forward moment. It’s a little mantra. It’s a little nugget of inspiration. Is there something that you live by that you can share with our audience?

Kimberly Daya: I don’t want to sound like a broken record, but I really do feel like I live by trying to see things not just from my own perspective. It’s just once you realize that we are all very different on different paths on, we all have a different journey in this life. That’s going to include things that somebody will never know.

And what their path includes is something that you’ll never know. And once you understand that, really understand that. You can start to see like you judge less, and you’ll lean into curiosity. I think my thing is put judgment on the back burner or check judgment at the door and lean in with curiosity.

And you really can’t lose with that.

Alycia Anderson: Thank you so much for you. And now being my friend and in my life, I’m so grateful. And thank you to our community for joining us again this week. This has been pushing forward with Alycia and that is literally how we roll on this podcast.