“Why is it that young adults are the highest uninsured group out of any age group? It might be because navigating the healthcare system can be a little overwhelming. Like me, you might be surprised that one in six young adults live with a chronic illness. So after turning 26 and aging off their parent’s health insurance, how do young adults get the quality health care that they need? In this episode of “Figuring It Out” we sit down with Nick White as he explains what it’s been like to live with an underlying health condition and navigate the healthcare system.”
TRANSCRIPTION:
Podcast Open-Music and Voiceover
Roshanna Dotson: Hi All! This is Roshanna Dotson and you’re listening to “Figuring It Out.” A podcast where guests share stories about their successes, failures, and transitions in life. Listen and connect to their stories and find a little bit of comfort in the fact that we are all just “Figuring It Out.”
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Episode Open
Quote open from Nick White: “I just know that things are a lot more difficult for people with underlying health conditions and it shouldn’t be that way because they’re the ones that really need the access and quality of care.”
(Music comes up slightly)
Young adults have the highest rate of being uninsured out of any age group, and yet one in six young adults have a chronic illness. On top of that, young people in entry-level jobs or doing part-time work often are not given employer-based health insurance. Today we sit down with Nick White as he explains what it’s been like to live with an underlying health condition and navigate the healthcare system after aging off of his parent’s insurance so that he can get the care that he needs.
(Music slowly fades out)
Interview
Roshanna Dotson: Hi, Nick. Thanks for joining me today.
Nick White: It’s a pleasure and an honor to be considered to be a part of this conversation.
Roshanna Dotson: So today as you guys can hear we have, Nicholas White, or Nick joining us and going to be telling us a little about his story. Nick is 29 years old, and is a community activist who focuses on providing people with information to receive quality and equitable mental and physical health care, particularly within the LGBTQIA+ community and communities of color as well.
Roshanna Dotson: So Nick, I think what you are doing within your community is amazing. Can you share how you became interested in community activism that revolves around healthcare?
Nick White: So I became interested because of my own experience in finding healthcare when I turned 26 and aged off my parent’s healthcare insurance. Navigating the whole insurance thing was a just a mess and on top of that, me being a queer black male with underlying health conditions it wasn’t easy to find a healthcare provider that could deal with all of my health care needs and wants. So after I learned more about gaining access to healthcare I wanted to make sure that other people had access and knew how to navigate those systems. Plus, I’ve had other people help me throughout my journey, so I figured I should just pay it forward.
Roshanna Dotson: Okay, let’s switch gears. Can you tell me about your underlying health condition? What exactly is it? And how does it affect your health?
Nick White: I have a disease called autoimmune hepatitis it’s not contagious and no one really knows what caused it. It’s just one of those funny things that just kind of happens. What I’ve been taught is that my body does not think my liver is mine and so nothing is on the same page, which means my immune system is hyperactive and it’s constantly attacking the cells in my liver. And it’s crazy, because the way I think of it is that my body thinks my liver is an intruder and it doesn’t belong to me so it’s constantly fighting against itself to get that intruder out.
Roshanna Dotson: So what is it like living with a condition that no one can see?
Nick White: So I have what people consider to be an invisible condition or invisible illness, because if you look at me physically, most of the time, I look fine, but inside there’s like always an internal struggle going on. But it’s difficult to navigate because people don’t understand that sometimes I just don’t have the energy or the mental capacity to deal with everyday things. Like sometimes I’ll feel fine and then all of a sudden I’ll feel sluggish or be irritable. I’ll have maybe a depressive episode or a manic episode and I don’t know if it’s my body or the medication. But I’m like oh something’s going on inside my body and I need to keep an eye on this.
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Bumper
Roshanna Dotson: You’re listening to Figuring It Out. We’ll be right back after this quick message from Rainn.org.
PSA
Rainn.org -Fight Against Sexual Violence
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Interview (Cont’d)
Roshanna Dotson: What was it like turning 26, knowing that you wouldn’t have the support of your parent’s health insurance if you needed it? Like I remember it was so simple for me, I applied to CoveredCA, an insurance offered under the Affordable Care Act, did like two things and was in. But I remember you saying that it didn’t work that way for you because of your underlying health condition and that you had so many more hurdles. Tell me about that.
Nick White: Yeah, so I am a huge fan of covered California I love that we are making sure that everyone has access to health care but for me it didn’t work. Because of my health condition I needed more coverage. Which was a whole nother issue, because of my underlying medical conditions I needed to seek more treatment and have more specialty care than most people would, and so, when I was going through my options the covered California plans just didn’t work for me. I would have still had to pay more for some services and I still didn’t feel like I was going to get the quality of care that I needed or was used to on my parent’s insurance.
At the time I was also working and thank God my employer offered insurance, so instead of going through covered California, I actually decided to go through my employer’s insurance, which was anthem blue cross, which was amazing. I got a primary physician, who was wonderful in dealing with any questions I had about being a queer black male with an underlying condition. He answered my questions about medications and prep, and all this other stuff which was wonderful.
I found a gastroenterologist who could treat my autoimmune hepatitis and they were all in the same medical network so I didn’t have to worry about transferring files or worry about them not talking or worry about like things getting miscommunicated. I’m so thankful that I had that access but for those people who do not have you know, an employer that covers their insurance covered California, is a great option, and I still believe in it today. I just know that things are a lot more difficult for people with underlying health conditions and it shouldn’t be that way because they’re the ones that really need the access and quality of care.
Roshanna Dotson: Another struggle that I know many American’s with underlying health conditions deal with is working at jobs that they don’t like just to get health insurance. I remember you would tell me that you didn’t like the last job you were at but you stayed because you needed the insurance. Can you explain a little bit about that experience?
Nick White: Don’t get me wrong, going in I loved the job at first. I had great management great staff everyone was amazing. But over the years, as people rotated in and out things started to change, and there was nothing I could really do because the person who was treating me unfairly was above me. I thought about leaving but didn’t want to find another job because it takes some time for that insurance to kick in or you never know what insurance the company has or if it will cover your medications or tests specific to your medical condition or hospital stays if you need them.
So I definitely stayed with my employer for longer than I would have liked because of the insurance. But in the end that job was detrimental to my health because the stress of it all caused me mental and physical fatigue and then that triggered my body to act up. My immune system ramped up because I was stressed out and that caused other health conditions to pop up and so I had a moment where I had to like literally take a step back and be like this is a huge problem for me, because I was literally sacrificing my mental and physical health for a job that is causing more stress and more strain on my mental and physical health.
And I know I’m not the only one, but people in my situation (silence) I think we feel like we’re stuck because we need the health insurance.
Roshanna Dotson: So a few months ago you and your doctor talked about being put on the transplant list. Now that you’ve kind of figured out your insurance and could possibly be getting a new liver. Does it feel like more of a relief? Like you’ve made it to a point where you may finally have balance?
Nick White: I’m actually scared. I mean I talked about this moment happening with my doctor when I first diagnosed. And you know we thought we could just control it with medications and everything else would be fine. But now that we are actually talking about me being on this list (silence) It’s something that I thought would be years away like 40, 50, years old, but now just being barely 29, 30 years old and thinking about being on the transplant list is (silence) It’s kind of a mental shift and I’m totally not ready for it, but because of the situation there’s nothing else I can I can do. And I don’t know if it will be a few years, or you know and a few months we’ll just have to see where I am and go through all the options, and keep monitoring how everything is. It’s been a struggle dealing with it so it’s an odd thing to think about for sure.
Roshanna Dotson: Figuring out healthcare and other things in life can be so hard, but before we close I want to end on more of a positive note. Can you share with everyone what reminds you to stay positive as you work through these ups and downs?
Nick White: So there are a few things that remind me to stay positive. While I’ve been on my healthcare journey, I had sought out a higher power and one of the bishops that I had talked to told me you have to be an active participant in your life and so to me, that meant that I had to take charge and I had to actually take the steps to say hey I am here, I am living, let me do all the things that I want to do you know. Don’t give up, stay positive, keep going, like even though there’s bad things that happen there’s always good things to come. Then I love traveling, and so one of my favorite things to do is travel with one of my best friends. As we travel the world together, I will always continue to be happy and in good spirits.
(Music Slowly fades in)
Roshanna Dotson: Thank you so much for joining me today, Nick.
Nick White: It’s been a pleasure and I appreciate being here and being considered to be a part of this conversation.
Show end
Roshanna Dotson: Thanks for listening to Figuring It Out. If you’re a young adult trying to navigate the healthcare system check out the link to the Young Invincibles Healthy Adulting Toolkit in the show notes. You can find more information about the show at figuringitout.com. You can also follow us on Instagram, Facebook, and Twitter @figuringitout and remember new episodes are released every Wednesday at 7am (EST).
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SHOW NOTES:
June 25, 2021
Episode 1: Figuring [Health Care] Out
Guest: Nick White
Young adults have the highest rate of uninsured of any age group, and yet one-in-six young adults have a chronic illness. Nick White, a community activist who focuses on healthcare, explains what it has been like to live with an underlying health condition and navigate the healthcare system.
Topics Discussed
-Autoimmune Hepatitis
-Invisible Illness
-Health Insurance
-Community Access to Health Insurance
-Affordable Healthcare Act
-CoveredCA
-Liver Transplant
Links and Resources
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