Below is the full transcript of Episode 80 of the Autoimmune Wellness Podcast.
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Title: From Flare to Flow: Emmitt Henderson III on Lupus, Identity, and Advocacy (Ep 080)

Mickey Trescott: So often when we hear stories about autoimmune disease, they’re framed around a specific protocol or a clear path forward, a set of tools, a plan, maybe something tangible to hold onto, but not every story fits neatly into that kind of framework. Sometimes the work of living with autoimmune disease looks like navigating uncertainty in a much bigger way.

It looks like advocating for yourself inside the medical system. It looks like making decisions that carry real weight and continuing to show up even when the path ahead isn’t clear. That’s the space we’re going to spend time in today.

Welcome back to the Autoimmune Wellness Podcast. I’m your host, Mickey Trescott. And before we get started, just a quick reminder that this podcast is for informational and educational purposes only, and it’s not intended as medical advice.

Today’s conversation is a part of our from Flare to Flow series where we explore what it actually looks like to live with autoimmune disease in real time. Not after everything is figured out, but right in the messy middle of it. And today’s guest brings a perspective that we haven’t yet explored on this show.

[00:01:15] Introducing Emmitt Henderson III, Lupus Patient and Advocate

Mickey Trescott: I had the chance to meet Emmitt Henderson at the Autoimmune Association Advocacy Fly in in Washington DC, where we were both on Capitol Hill advocating for legislation that supports people living with autoimmune disease.

Now Emmitt is somebody whose story immediately stayed with me. He is one of the number of men living with lupus and he’s currently navigating stage four kidney failure as a result of his disease. While at the same time you guys, also advocating tirelessly for awareness, representation and better support for this community.

And what struck me the most about Emmitt is not just what he’s navigating, but how he’s showing up inside of it. With honesty, persistence, and a deep commitment to helping other people feel seen. So Emmitt, it’s really a pleasure to have you here, and thank you so much for joining us.

Emmitt Henderson III: Oh, Mickey, I am just, such an honor for me to be here with you. Thank you so much.

[00:02:12] Emmitt’s Lupus Diagnosis Story

Mickey Trescott: So Emmitt, to start us off, can you share a little bit about your journey with lupus and what led to where you’re at right now with your kidney health?

Emmitt Henderson III: Yeah, absolutely. I mean, my story goes back to 1980 when I was a little kid. I had a rash and fevers that pretty much exploded all over my face and my arms. And after seeing doctors numerous times. They told my parents they could not figure it out, and I was diagnosed with fevers and rash of unknown origin.

15 years later, it kind of evolved to major joint pains I was having and as a young man at that time, managing my business in the automotive field, I went into the emergency room for joint pains in my wrist, and when they did x-rays found nothing wrong. They decided that just to tell me to go home and put ice on it.

Okay. Two more trips later with the shoulders and the knees. I was told the same thing. So Mickey, at this point now I’m kind of embarrassed to go back for any other cause because I don’t want them to tell me nothing is wrong. Until two years after that. That’s when they found out that I have a pain in my lower back.

Now, there’s no joint in my lower back. So I could not understand what was going on until at that time they decided to draw blood. And when they did, that’s when everything turned upside down for me. I went from urgent care to a memorial hospital here in San Diego, and there I was in there for over three months, just to give me a diagnosis of a disease that they told me at the time was rare in men, rare for my age, and rare for my ethnicity, and they said I have lupus.

Have I ever heard of it? No, I have not. Has anyone in my family has ever heard of it? No, they have not. So it was hard for me to understand what this disease was, and she told me in one simple way that it was a woman’s disease. Now at that point, I was so much in a denial that I couldn’t understand that just ’cause I was feeling okay at the time. And because you see abnormalities in my blood that I have a woman’s disease and they confirmed it was lupus and that it was rare in men, but men do get lupus.

So here’s the one kicker that really put it over for me. When they tried to educate me on what lupus was in the hospital during my stay, and they gave me a pamphlet. Now Mickey, this pamphlet had a woman’s anatomy in it. So when I looked at that, read that there was no way that I felt I could relate to this at all.

Mickey Trescott: Thank you for sharing that Emmitt. And I think it really is a testament to how different all of the perspectives and experiences that we have within the medical system. And I think It’s really important that we consider this from every angle, right?

[00:05:08] Navigating Uncertainty and Kidney Transplant

Mickey Trescott: One thing that I want to hone in on a little bit, so like right now, as a complication of your lupus, you are navigating stage four kidney failure and the possibility of transplant. What has it been like to navigate that source of uncertainty day to day?

Emmitt Henderson III: Its been pretty tough because of the fact that with my status as being an advocate and the help that so many people has reached out to me to try to help test for me, we’re going on four years now and every single person had pretty much not been eligible or did not qualify for certain reasons, which made it hard for me because in these four years, this is my second kidney failure. And this kidney failure way more complications compared to the first.

So it’s battling an uphill battle that has been really difficult up to this day. You know, after the fly in, I end up going into the hospital for a couple days and just from the results of that, I’m canceling my next few fly-ins, just to kind of get my body a rest just so I could take care of myself and see that if everything goes well, I can put myself in a condition, in a position to where I could feel at least a little bit more healthy and stay out of the hospital.

So it’s been pretty tough, but I’m managing the best I can.

[00:06:29] Engaging in Autoimmune Advocacy

Mickey Trescott: Yeah, and I met you through that advocacy work, we were there together in Washington DC. I know how important that is to you, and I’d love for you to speak a little bit about what led you to step into that role, even amidst, I mean, stage four kidney failure, I did not expect to meet someone like you who had flown across the country to do this advocacy work.

And even right now you’re saying, I’m canceling a little bit, but then I’m going to wait until I get healthy in order to bring that back up. What do you wish more people understood about men living with lupus? ’cause this is just such a passion of yours.

Emmitt Henderson III: It is, just the way it is with men living with any chronic autoimmune disease is that we have more fight in us than we think we do. Just ’cause we were told that we have an illness that will stricken us from life. And a lot of things that you know, we are normally used to doing doesn’t mean that we give up and we stop trying to achieve those things.

I’ve been a go-getter since I was a young man. My profession, again, was a manager in an automotive dealership at a very young age. So I grabbed the bull by the horns at an early age. And when I got diagnosed, I kept that same mentality and that mentality for me was no matter what, you gotta keep going. You gotta stay strong, and there are going to be obstacles that are going to try to slow you down. It is okay to get slowed down. You just don’t quit. And with that type of mentality is where I’m at today.

Mickey Trescott: Wow. And I mean, it really is contagious. I hear you talking about it, I’ve seen you out at these events, and I just can’t believe your persistence, and I just find that really admirable. So thank you Emmitt, for sharing and for what you do.

[00:08:11] Becoming a Kidney Donor

Mickey Trescott: I know that you are currently looking for a kidney donor. We’ve mentioned it a couple times. I was actually pretty unfamiliar about kidney donation until I met you. Can you share for our listeners a little bit about that process and what you want people to know about kidney donation?

Emmitt Henderson III: Sure. Medical have come a long way to where back in the day and before it used to be that if you were somebody that was eligible to donate to someone, you had to have the same blood type. You had to be a match, is what the key words they were looking for. Today it is not like that at all. As long as you’re healthy, you are able to be a donor to somebody else.

There is what is called donor exchange programs. So in instance, Mickey, if you say you were healthy and you wanted to donate to me, but we were not compatible with certain tests, then the registry would find somebody that is compatible with you because of the thousands of people that are looking for donors.

And if you were to donate to someone on the registry on my behalf. That would mean that would push me to the top of the list to get the next donor that is compatible with me. So there are ways for it to be a success story, even though we’re not compatible at all.

Saving a life is the biggest and best thing that someone could ever have under their belt, and my brother did it 2013 when he gave me my first kidney, and to this day he’s still my hero. Now I’m looking for another hero to continue that.

Mickey Trescott: Wow. Wow. Well thank you so much for sharing that, and I love that we have the technology now to really accept the spirit of wanting to be a donor. ’cause I know that has been a challenge in the past for organ donation. And so it’s great to know that if you can find someone to just donate a kidney, that chances that you will end up with one that matches for you. It makes that process so much easier.

[00:10:06] Emmitt’s Message for Anyone Struggling Right Now

Mickey Trescott: Emmitt, for anybody who’s listening, who’s in a really difficult or uncertain season, this is something you’re definitely going through right now. What would you want them to hear? What’s your message for them?

Emmitt Henderson III: My message is no matter what you’re going through, always remember that there’s somebody also going through it and that you’re not alone. The best way, I think that you can cope with it is to get involved, find your target area of your disease, get involved with support groups. Listen to other members that are talking about what they are going through.

It may spark or help something or motivate, inspire you, knowing that you’re not alone, that you can do something about this illness. I decided to do something about it, and here I was on Capitol Hill with you, Mickey. So, it’s just ways that we can take, again, charge of our health, listen to our doctors, take our meds like we’re supposed to, but then there’s so much that we can do on our own, without the doctor’s, information and help, that we just have to have that self care and love and motivation to keep going.

Mickey Trescott: Gosh. I love that. That is just such an incredible message.

[00:11:12] Connect with Emmitt and Male Lupus Warriors

Mickey Trescott: And I know Emmitt, you have a platform for men with autoimmune disease and men with lupus. Can you tell us a little bit about that and how anybody can connect with you if that’s resonating on their end?

Emmitt Henderson III: Sure, when I decided to become an advocate, I created my own organization called Male Lupus Warriors. And the reason why I did that is because being diagnosed in the mid nineties, there was no organization for me that I could reach out and get information with men going through any type of autoimmune diseases.

So the platform that I created, I wanted to be the resource that was not there for me in the nineties and two thousands. I have a support group for men once a month that men can just jump on. They can listen to other men going through their chronic illnesses and just be inspired by them opening up because that is one thing that men do not do much, is open up.

But fellas, I got a safe space for you. I got the ingenuity and the mind shift to know what we are going through. So we make it a safe and fun platform. You can email me at [email protected] is my email, and I will give you all the information you need to stay in contact to get involved and to feel that you were not alone.

Mickey Trescott: Awesome. Well, thank you so much for that, Emmitt. And for anybody listening, if you are a dude and you’ve got Lupus, Emmitt’s your guy, if you are a lady listening and you have a man in your life who is struggling with a chronic autoimmune condition like lupus, we know where to send them. Right?

[00:12:44] Wrap Up and Closing

Mickey Trescott: Emmitt, thank you so much for sharing your story with us today. I’m really grateful for your honesty and really the way that you continue to show up, not just for yourself, but for everybody in this community, while you’re going through this. It’s truly an inspiration to me. We’re both out here trying to make it better for the next person with autoimmune disease, and I’m really honored to have connected with you on that.

Emmitt Henderson III: Thank you so much.

Mickey Trescott: And for everybody listening, if this conversation resonates with you, I want to let you guys know that even in the most uncertain or challenging seasons, your experience matters. There is so much strength and continuing to show up to ask questions, advocating for yourself, finding support, and also helping other people on your journey. I just can’t emphasize this enough.

If Emmitt’s story moved you, whether that’s in understanding Lupus or recognizing the importance of advocacy or even considering what it means to be a kidney donor. We’re going to include ways to connect and learn more in the show notes. If you’re somebody who is currently moving through a flare, a transition, or a difficult chapter, and you feel called to share your experience, I’d love to hear from you.

You can reach me at [email protected] or social media. Just tell me a little bit about what you’re going through, because I’d love to feature you on these flare to flow conversatoins. they’re about real life, and your story might just be what the next person needs to hear.

So thank you Emmitt, for being here with me today. Thank you to everybody for listening, and we’ll see you in the next episode.