Life with Alopecia Universalis

Ariel Rawlings [00:00:04]:
It is genetic. So I had to have the genetic trait from both of my parents. And then since it’s autoimmune, you have to have an environmental trigger as well. The genetic from both my parents is weird because I had never heard of alopecia before in my life. Until my hair started falling out. I didn’t even know what it was. Nobody in my family has it, so it’s just like silently been passed down. Genetically, genetics are weird, but somehow both my parents had the alopecia trait, and I got both of that from them.

Kevin Rolston [00:00:45]:
Welcome to Hairpod, the podcast where you get to hear real people talk about their hair journeys. I’m your host, Kevin Ralston. And each week I get to interview people from different walks of life whose lives have been touched by hair loss in some form or fashion. Many of our guests have experienced hair loss themselves and found a way to get their confidence and their hair back. This week, were talking to Ariel Rawlings, who came on the show to share her experience living with alopecia universalis. For those who may not already know, alopecia universalis is a rare and severe form of alopecia areata that causes complete hair loss across the entire scalp and body, including eyebrows, eyelashes, and all other body hair. According to the National Institute of Health, this hair loss is caused by an autoimmune response where the immune system attacks hair follicles. While alopecia affects around 2% of people worldwide at some point in their lives, alopecia universalis is even less common.

Kevin Rolston [00:01:48]:
Ariel’s story is not just about the experience of losing the hair itself, but of finding a way to live that makes her feel comfortable and confident. And in doing so, finding a new life path, helping other women do the same, were starting back at the beginning when Ariel first noticed her hair loss. Like many women, she suffered from postpartum hair loss after her children were born. But after her second baby, something was different. Her hair wasnt growing back.

Ariel Rawlings [00:02:20]:
A lot of women experience hair loss after pregnancy, and I had that with my first, and it, you know, just postpartum hair loss with my second. It just, it started as what I thought was postpartum hair loss. And, you know, there was some thyroid issues going on that I thought corrected the hair loss. But it really, you know, a matter of months after I started the thyroid medication, it just all fell out, everything. And I think it was directly related to, you know, hormones are crazy after pregnancy. And then our baby was just one of those kids that cried all the time and never slept. So with autoimmune if you’re high stress like that can trigger it. So that was my trigger, I think, was just the stress of this little baby that never slept.

Kevin Rolston [00:03:12]:
Wow, that’s so tough because I know in those instances you may not be paying too much to yourself because you’ve got this new life that you’re giving all of your attention and focus to. So what was that like? Tell me about the thought process that went through it and how extreme did it get? Because im sure at first you might notice a little bit and think, okay, my body has gone through a lot here giving birth, and so this is just part of the process. When did the alarm bells start going off? How bad did it get?

Ariel Rawlings [00:03:40]:
Yeah, so like I said, at first I thought it was just postpartum hair loss because that happened with the previous child that I had. And, you know, it was a little bit worse than that. So I was able to get in and see my doctor, and she diagnosed me with low thyroid or whatever and then went about my way, like a couple months, you know, after that it started falling out again and we would find, like, wads of hair in the laundry or, you know, every time I took a shower, like, I’m like scraping all this hair out of my hands and, like, just, you know, vacuuming hair up all the time. Like, the vacuum was full of hair. Like, you would not believe how much hair you have until it starts falling out.

Kevin Rolston [00:04:23]:
Right.

Ariel Rawlings [00:04:23]:
And a lot of those, you know, alarming things started happening. And I am very much a person that’s like, just brush it off and, you know, it’ll get better. Don’t worry about it. But it’s kind of, like, hard to ignore when you can see my scalp and there’s spots of total hair loss. And so I also really had to advocate for myself with my physician because, you know, I was like, I think I need to come back in. I think it’s getting worse. It’s not getting better. And there was no urgency from my physician.

Ariel Rawlings [00:05:00]:
And then when I finally got in to see her, she was like, oh, you weren’t kidding.

Kevin Rolston [00:05:04]:
Wow.

Ariel Rawlings [00:05:05]:
No, I wasn’t kidding about that. And even to get an alopecia diagnosis, in my experience, I really did have to like, and, you know, the doctors just didn’t care as much as I cared about it. It felt like. So I really had to advocate for myself to get that diagnosis and get them to pay attention to what was going on. So I pretty much diagnosed myself before I finally got into the doctor and got a diagnosis. But the timeline really was, yeah, the timeline was, you know, about four months postpartum, I started experiencing postpartum hair loss, what I thought was postpartum hair loss. And, you know, it was really extreme. So maybe a couple months after that, I went in to see the physician, and they prescribed me with low thyroid.

Ariel Rawlings [00:05:47]:
I had blood, a ton of blood drawn through this whole experience.

Inquisitive Co-host [00:05:51]:
That sounds like fun.

Ariel Rawlings [00:05:52]:
Yeah. I got on, like, a thyroid supplement medication that, you know, at the time, which is funny looking back on, but that, like, being told that I needed to take this thyroid medication for the rest of my life was devastating because I do not take medication. Like, I pride myself in that. And there was maybe a little bit of, you know, obviously some pride in that, like, feeling like the world was ending a little bit there. But looking back, that was not a big deal at all. But, you know, in the moment, what my experience. But, you know, I started taking that thyroid medication, and the hair loss pretty much stopped, like, for a month or two after taking that, and then it just, like, rapidly fell out after that. So I don’t know if, like, so it.

Kevin Rolston [00:06:38]:
I don’t know why it stopped.

Kevin Rolston [00:06:40]:
And then all of a sudden, it picks up. But it’s more intense than it was before.

Ariel Rawlings [00:06:44]:
Yes, exactly. So it was, like, quite an emotional roller coaster.

Kevin Rolston [00:06:48]:
Oh, yeah. Like, wow, great.

Ariel Rawlings [00:06:50]:
You know, this is the answer. Everything’s gonna be fine. My hair is growing back. And then a few months later, like, this is all. So I had my baby in August, and then, so this is all happening around the holidays, too. And so, like, I. Thanksgiving to Christmas. Like, I went from, you know, being able to go out and people wouldn’t really notice.

Ariel Rawlings [00:07:12]:
It was more just me noticing it to having, like, hardly any hair at all. Whoa. So, yeah, it took, like, a month or so, and, like, all the hair on my head fell out, and then the month after that, like, eyebrows, eyelashes, like, everything. So.

Kevin Rolston [00:07:27]:
No, everywhere. Oh, my goodness.

Ariel Rawlings [00:07:30]:
Yeah. Yeah. Like, no arm hair?

Kevin Rolston [00:07:33]:
No. Wow.

Ariel Rawlings [00:07:36]:
Yeah. And then, so after I got the thyroid diagnosis, it took me until February to get an alopecia diagnosis.

Kevin Rolston [00:07:48]:
Ariel was going through so much, as if the stress of parenting both a child and a newborn while dealing with sudden, aggressive hair loss wasn’t enough, Ariel had to tirelessly advocate for herself while seeking a diagnosis with her physician. And its important that she did. Unlike a broken leg or a life threatening illness, hair loss is seen as an aesthetic or cosmetic issue. So it isnt always prioritized by doctors. But as anyone who has experienced hair loss knows, it can be so much more than that. Hair loss can sometimes indicate other health concerns, like hormonal issues or lack of nutrition. But even if someone who is experiencing hair loss is otherwise healthy, the emotional toll caused by hair loss in many cases shouldn’t be ignored. For many people, hair is an important part of how we see ourselves.

Kevin Rolston [00:08:38]:
It can even be a part of how we envision the future. Like it was for Ariel.

Ariel Rawlings [00:08:48]:
As a female, my hair was part of my identity, and, like, I didn’t realize it, but, like, I had pictured my future, like, with my daughter, like, playing with my hair or, like, giving eyelash kisses, you know, like, with my little kids.

Kevin Rolston [00:09:04]:
Like, you want to take photos, right? And part of taking a photo with your kid is you want your kid to look cute, but you also want to look good yourself in those photos.

Ariel Rawlings [00:09:13]:
Yeah. And my kids played a vital role in, like, my emotional state through it because I wanted to be a good example to my daughter. Washington two. And I had my baby boy, and so I wanted to show her that, you know, I am still me. You know, there’s more to me than my hair. So I challenged myself a lot, and I was lucky to have a supportive husband and supportive family around me, which was huge. But it didn’t take me too long to, like, embrace it in a way, which is. It’s a constant struggle to embrace it.

Ariel Rawlings [00:09:48]:
But I feel like I was able to adapt quickly. You know, I challenged myself to go out without hair. You know, I hadn’t really gotten into the world of wigs yet. You know, at the beginning, I had a wig that my mom bought me that was terrible.

Kevin Rolston [00:10:02]:
Thanks, mom.

Ariel Rawlings [00:10:02]:
I just didn’t know what options were out there. Yeah, thanks, mom. Really. But we just didn’t know. But, yeah, there was definitely a lot of tears. I think the hardest emotional thing, hurdle for me was my relationship with my husband.

Kevin Rolston [00:10:17]:
Yeah.

Ariel Rawlings [00:10:18]:
Because I felt like, in a way, I was letting him down. Like, we got married and, like, you know, we’ve been married for 13 years now, but I just, like, you married me, and I looked a certain way, and I know that I’m not going to look that way forever, but I just never pictured, like, being so drastically different than the woman that you married. And, like, over the years, just his reassurance has, you know, strengthened our relationship and shown me, like, goes both ways. Like, it’s not about, you know, it’s about who you are. Like, he always tells me, I have the same smile, I have the same eyes. Like, I’m still me. So there was a lot of tears, particularly to him. And, like, just, like, him convincing me that he was still.

Ariel Rawlings [00:10:58]:
Still loved me and was thought I was beautiful with or without hair. So that was the huge emotional hurdle. And, like, even today, I sometimes just wish I had hair. It would make things easier. So there’s still emotional days. I think that’s just the way it goes.

Kevin Rolston [00:11:13]:
But you are so fortunate that you had a great support team and something that really supported you. And I know you can’t take yourself to a place where you didn’t. But tell me a little bit about your self talk, because the way that we talk to ourselves is very important. And you’re going through this, and there’s somebody right now that’s listening that wishes they had the wonderful husband that you have, and they’re trying to figure out how to talk to themselves about how they feel about their hair loss. What would you say to them? Because what were the struggles you went with? And it sounds like you turned a corner at some point, but I imagine it took a little bit of time. How did you change your self talk to get to that point?

Ariel Rawlings [00:11:50]:
I think one of the biggest things that helped me just realize that I can still live a full life without hair was finding a community and getting to know other women that have gone through this. So, for me, this was right before COVID times. So Instagram was a big thing. There was a lot of people sharing their stories on Instagram at that time. I feel like. I don’t know if it’s still the same, but I was able to find a lot of a few women on Instagram that were sharing their alopecia stories, and that gave me strength just to see them, like, living their life without hair. And it’s fine, and, like, you know, I can still have joy in life without hair. Life goes on.

Ariel Rawlings [00:12:37]:
As far as self talk, I think I’m just a naturally positive person, and I think that helped a lot for my timeline of, you know, working through it and not constantly feeling devastated, but I think it just took time. I think I have learned, too, like, our process of dealing with alopecia, each individual person that goes through this, it’s a little bit different, and you shouldn’t compare your story to anyone else’s.

Kevin Rolston [00:13:04]:
Mm hmm.

Ariel Rawlings [00:13:05]:
I thought that I really needed to, like, to fully embrace who I was. I needed to, like, go out bald all the time and, like, just be unapologetically, like, you know, I thought that.

Kevin Rolston [00:13:15]:
Was, like, you had to own it. You wanted to be authentic in your authentic, true self.

Ariel Rawlings [00:13:19]:
Yeah. But I’ve learned over the years that if I’m more comfortable in a wig. That’s okay.

Kevin Rolston [00:13:24]:
Yeah, right?

Ariel Rawlings [00:13:25]:
Just wear the wig. It’s like, for me, it’s an accessory. Like, I have no problem telling people I wear wigs and I wear different styles and colors all the time. But, yeah, I, you know, other people stick to the same style. They don’t want people to know. And that doesn’t mean, like, I’m any farther along on this acceptance journey than you are. It just means we deal with it differently. And so I think that was a good thing to realize.

Ariel Rawlings [00:13:45]:
You know, I see these women just embracing it fully out and about bald, like, on social media, and I’m like, I need to be that, but I don’t.

Kevin Rolston [00:13:58]:
I loved hearing that Ariel’s support team, her family, her husband, and online community were supportive forces throughout this process. Finding people that will treat you with love and compassion while youre struggling to navigate the emotions of losing your hair can make the process so much easier. And to Ariels point, she was able to find her own unique path through her hair loss. There are many healthy ways to cope, and its up to each person to decide what theirs will be. And socially speaking, our culture is becoming more accepting and stigmatizing hair loss less. But it’s hard to say how things are changing in the medical field.

Ariel Rawlings [00:14:39]:
As far as, like, the medical world being more understanding of it. I think in general, our generation is more accepting of, like, the emotional toll of many things in life, you know, like anxiety and depression. And, you know, it’s a lot more talked about, like, going to counseling and therapy and, and I think we’re taking notice more of the emotional toll of whatever your life experiences are. But it’s hard to say, like, because I’m not talking to the medical field a lot about my alopecia anymore, because I’ve sort of decided to stop seeking medical help for it. I will say, I will speak to it a little bit, too. I’ve have, since I’ve lost my hair, I’ve had the opportunity to open a wig shop here in Round Rock, and I get to see women who are experiencing hair loss. And so it’s so rewarding because so many of them come in and they say, I’ve been to hairstylists, I’ve been to other places, I’ve been to even medical professionals asking for help with this. And nobody understands the emotional toll that it takes.

Ariel Rawlings [00:15:47]:
Like, I’ve had women and their husbands, like, give me hugs and, like, cry, because just having someone that knows the emotional toll that it takes is something they haven’t experienced before. So there’s, you know, it’s not perfect, the medical side of things. I think there’s still room for understanding, and maybe that’s why I share my story, is because maybe they just aren’t going to find that support and empathy from medical professionals. But it’s, there. There’s a great community of support for those dealing with struggling with hair loss. There’s Facebook pages that I’m a part of, some that are more local, some that are just people from all over the world. You can find them out there for sure. I find a lot on Instagram, too, just like, even on my Instagram account.

Ariel Rawlings [00:16:37]:
Like, I have women that message me and just for advice or support or, like, whatever. And I’m always happy to talk to people about it and my experience and how I’ve been able to get through it.

Kevin Rolston [00:16:53]:
I think one of the most inspiring, inspiring parts of Ariel’s story is knowing that she now uses her platform and her career to support others who are going through hair loss. She’s come so far since day one from realizing that something wasn’t quite right and her hair wasn’t quite growing back to now being able to speak openly about her hair journey and help others through theirs. I asked her if she could see growth over the course of her journey.

Ariel Rawlings [00:17:24]:
Yeah. I mean, mentally for sure, emotionally for sure. Even, like, just knowing how to put my eyebrows on and to do eyelashes, you know, like, I look at pictures and I’m like, just. I can just like.

Kevin Rolston [00:17:39]:
So it’s still everything you still have?

Ariel Rawlings [00:17:42]:
Yeah. I mean, nothing. Yeah. Alopecia universalis is the most extreme type of alopecia, and it rare for it to grow back. It can for some people. And when I first got alopecia, I dove deep into the inflammation and, like, autoimmune stuff, and I totally changed my diet and went vegan. And what caused all these natural things?

Kevin Rolston [00:18:05]:
What happened with pregnancy, too, that it was so different? Did they have a. Is it anything the doctors don’t really know?

Ariel Rawlings [00:18:12]:
Okay, well, it is genetic, so I had to have the genetic trait from both of my parents. And then since it’s autoimmune, you have to have an environmental trigger as well.

Kevin Rolston [00:18:22]:
Okay.

Ariel Rawlings [00:18:23]:
The genetic from both my parents is weird because I had never heard of alopecia before in my life. Until my hair started falling out. I didn’t even know what it was. Nobody in my family has it, so it’s just, like, silently been passed down genetically. Genetics are weird, but somehow both my parents had the alopecia trait and I got both of that from them.

Kevin Rolston [00:18:42]:
Oh, wow.

Ariel Rawlings [00:18:43]:
And then if I had an identical twin, she wouldn’t necessarily experience alopecia. You have to have an environmental trigger and the genetic traits from both parents in order to get alopecia.

Kevin Rolston [00:18:56]:
Was giving birth that environmental trigger, or was there something else?

Ariel Rawlings [00:18:59]:
I think it was the stress of postpartum, like not sleeping. This poor little boy cried all the time.

Kevin Rolston [00:19:07]:
Oh, boy.

Ariel Rawlings [00:19:10]:
Yeah, it’s hard when you’re not sleeping. And I had a lot of. I had pretty bad postpartum anxiety, probably from not sleeping. That just makes everything worse. So it was. And then I had a two year old at the same time. It was a very hard time in my life. Very stressful.

Ariel Rawlings [00:19:26]:
So that stress is a big trigger for autoimmune. And they say, like, if you can, you know, eliminate the stress and, like, clean your diet, like, you can kind of reverse it. I’ve tried. It didn’t work for me, and maybe some people are better luck with it, but.

Kevin Rolston [00:19:44]:
Right.

Ariel Rawlings [00:19:44]:
There’s also, like, the FDA’s approved recently a couple of drugs that treat it that actually work. There’s just weird side effects that you have to take into account. You know, you have to balance the value versus the risk. So it’s not a perfect answer.

Kevin Rolston [00:19:59]:
I thought I knew about everything when it came to hair loss. Ariel, talking to you today, I learned so much more. You were very educational and inspiring at the same time. And high five your husband for me because he is an awesome dude. And I’m so happy that you have that ingrown support team to be there with you and help you through this. Thank you so much for taking the time today.

Ariel Rawlings [00:20:21]:
Yes, thank you so much for having me. I love sharing my story because there’s hope after hair loss, and I want everybody to know that. I want people that are in the place that I was, where I was crying every night and didn’t know who I was when I looked in the mirror. Like, there’s life beyond that, and there’s joy and hope, and you can live your life to its fullest still.

Kevin Rolston [00:20:48]:
We want to thank Ariel for joining us today and sharing her story of hope. The experiences she shared are a powerful reminder that something as challenging as hair loss can be a catalyst for growth, community, and self discovery. To everyone out there who is dealing with any form of alopecia, we hope Ariel’s story has inspired you to advocate for yourself, to seek out the resources and support that you need, and to remember that you are not alone. Finding a strong support system, whether it’s friends, family or community of others who understand can make all the difference. No matter where you are in your journey, remember that there is always hope and there are people who care and want to help. Thanks for listening to another episode of Hairpot. If you’re looking for a community to connect with, you can always check us out at Hair Club on Instagram or search Hairpot on Facebook to continue the conversation. If you know someone who could benefit from hearing this episode, we would love it if you would share it with them.

Kevin Rolston [00:21:47]:
If you’re enjoying the show, consider leaving us a rating and review on Apple Podcasts or your favorite podcast app. We also have a website. Check it out by going to podcast hairclub. We’re here to build people up and share real stories so people experiencing hair loss feel a little bit less alone. And when you share, review and subscribe it helps us do just that. So thank you. Until next time.