249: Inspiring Vitiligo Personal Journey w/ Tonja Johnson

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Did you know that June is Vitiligo Awareness Month?? My guest today shares her empowering, emotional personal story and shares how she became a Vitiligo Patient Advocate!

Today's guest, Tonja Johnson, exhibits creativity, innovation, and determination. She has persevered through many obstacles in life, which has fueled her passions. Tonja is the founder of Beautifully Unblemished, a vitiligo support group that was birthed in 2017 after a challenging time finding a local support group in the state of Florida.. Her passion and drive are inspired by her own experiences dealing with Vitiligo and learning to embrace the physical changes she faces daily. She is passionate about empowering individuals to love the skin they are in. In her spare time, she enjoys singing praise and worship, interior decorating, and traveling.

Join us as we discuss how to best SUPPORT someone with vitiligo and hear Tonja's journey.

If you've been diagnosed with vitiligo and joined a support group, what specifically helped the most? Let me know in the comments!

Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android

In this episode:

  • What is vitiligo and what symptoms do people commonly notice?
  • Who is affected by vitiligo?
  • Tonja's personal vitiligo journey and how it impacted her to the point of contemplating suicide
  • How Tonja dealt with her diagnosis emotionally + mentally (Why it's NOT “just skin”!)
  • The benefits of getting support especially if you feel ashamed of your vitiligo diagnosis
  • How to support someone living with vitiligo

Quotes

“There IS treatment. There's no cure, but there IS treatment that gives a temporary relief, I would say, for someone that has vitiligo. And it can slow down the process of vitiligo if you get treated earlier.” [15:08]

“About three years into having vitiligo, I began to get depressed because the skin, my pigment was changing aggressively. I was losing my color, it seemed like every day, spots were appearing on my skin, and it was really devastating. I felt like I'd been given a death sentence. I knew it wasn't cancer, so it wasn't that bad, but it was emotionally a roller coaster, just trying to figure out the hows, the whys, where did it come from?” [2:06]

Links

Find Beautifully Unblemished online and on Instagram

Follow Tonja Johnson on InstagramFacebook

World Vitiligo Day is June 25th! Learn more HERE.

249: Inspiring Vitiligo Personal Journey w/ Tonja Johnson FULL TRANSCRIPT

Jennifer Fugo: Tonja, I'm so excited to have you here today. Thank you so much for joining us here on The Healthy Skin Show. I am really excited because you are the first person to come on The Healthy Skin Show who personally is dealing with vitiligo. And I would say that you are a huge advocate within your community as well. So I know that a lot of our listeners have heard… I think there's one other episode about vitiligo from the perspective of a dermatologist, but I would love if you'd be open to sharing your just personal journey with vitiligo with the audience, that way they can kind of hear from somebody else. Especially if someone doesn't know anyone else who has this condition.

Tonja Johnson: Okay. So I was diagnosed back in 2014 with vitiligo. At that time, it was just on my arms and a little bit on my legs. And so when I went into the dermatologist, they said, “Oh yeah, this is vitiligo.” And, of course, I left there feeling kind of withdrawn, distraught, like, “Oh, my God, what is this? How did I get it? There's nobody that I know that has this, especially in my family.” And so I left there feeling a little bit discouraged because the dermatologist didn't give me any information. There was no handout. There was nothing that says, “This is what vitiligo is. These are the symptoms. Here's treatment.” There was actually nothing. He just gave me a bunch of prescriptions. “Oh, you can use this cream for your face. You can use this cream for your arms.” And that was pretty much it.

Tonja: And I left there feeling like, “Oh, my God, I've got this and he didn't give me a support group. He didn't give me a pamphlet that would tell me more details about vitiligo.” So I started Googling and I started seeing all these pictures and I was getting more scared, like, “Oh, my God, am I going to look like this?” And about three years into having vitiligo, I began to get depressed because the skin, my pigment was changing aggressively. I was losing my color, it seemed like every day, spots were appearing on my skin, and it was really devastating. I felt like I'd been given a death sentence. I knew it wasn't cancer, so it wasn't that bad, but it was emotionally a roller coaster, just trying to figure out the hows, the whys, where did it come from?

Tonja: And it was just crazy. So I remember sitting in my bathroom floor, just crying and weeping and contemplating suicide because the way my skin was changing. To me, I looked like a monster. To others, they thought, “Oh, that's a beautiful work of art.” And I couldn't see it at the time. Wasn't beautiful to me because it was just patches of white, just white patches all over my body. And at that time, it had become on my face. It started in my face and it was devastating when it got into my face. I'm not really sure why it changed the dynamics of how I was feeling, but once it got in my face, it was a game changer for me. So I covered for about three years, three, four years I covered. And that was hard because I live here in Florida and covering with the sun, the makeup, the concealer, the moisturizer and all of that that you have to put on and trying to make sure that you have all your patches covered and that it's still matching the other skin tone that is still there, your original skin tone.

Tonja: So being a black female, being dark skin, and then losing all that color, it took a toll on me. It took a big toll on me because as a child, I was teased for being so dark. And then here as an adult, I'm losing that very skin that I've came to love. Now it's being taken away and it's being characterized by white patches. So today I'm about 85% white. I only have about 15% of my original color left. And so at that point, I was like, “I've got to do something because if I'm going through this and I'm feeling this, somebody else has to be going through this.” And that's how I started Beautifully Unblemished. And if you listen to the name of it, it's Beautifully Unblemished. We're not blemished, we're yet beautiful. And for some, it takes a long time to get to that point. But for me, I would say it took probably about five years to get to that point of accepting what had happened with the skin loss.

Jennifer: Do you feel like in your journey, there are misconceptions about vitiligo that you've butted up against that maybe people assume about you or you've noticed or heard from other people in your support group, that folks who don't have vitiligo, don't know about vitiligo, they just make assumptions that are really incorrect about someone who is going through this process?

Tonja: Yes. So I've heard, from myself, just experiences and others that are a part of the group that people think you've been burned, or they think that you have bleached your skin because you no longer want to be this color, which is weird. I don't know who would want to bleach their skin. I've also heard that it's just skin, “Get over it. It's just skin.” And for me, it's more than just skin because it affects who I am as a person, it affects what I look like. And I mean, this is good compared to what I used to look like, because you can imagine these kind of splotches in various places of your skin or having a white nose and then the rest of your face being black. So it's pretty devastating for someone that has vitiligo to accept the changes that the skin is going through.

Jennifer: And this happened to you as an adult. And I guess with your support group, is it mostly adults that experience vitiligo or does this also start in younger children?

Tonja: It starts in younger children. Most of our patients, they started as a child with vitiligo and then most of us… There's probably I would say 50/50 that started as a child and then some that started in their 40s. And a lot of times, we're finding out that stress causes it to be aggressive. Our age range from five years old to 80, who has vitiligo. And we have some members that have had it since they were kids, we have some that got it in their 40s and now they're 70 and 80 years old.

Jennifer: And with this age range and you also mentioned, you became really depressed. You felt really cut off from a number of different facets of your life. And I tend, to some degree, understand, when your skin is… And we talk about all different types of chronic skin issues on the show, that when people can see something is going on with your skin, there is something very distinct. People don't want to touch you at times. They don't understand. And I can appreciate the comment, which is, I would say, very unempathetic and cruel to just go, “Well, it's just skin,” as if you're not allowed to feel how you feel.

Tonja: Right.

Jennifer: It sounds like there's levels by which you have to learn how to navigate this, from a medical perspective and then also from a societal and relationship perspective.

Tonja: Correct. Because a lot of times when a person has vitiligo, you can always see it, maybe it's under someone's clothing. And so a lot of times when people see you, we cover. People with vitiligo tend to cover. So whether that's wearing long sleeves, whether that's covering with makeup, it could be an array of things that people do. I chose to cover because I didn't want anybody to know that I had it. And the way that my skin looked, it was almost like you want to cover it because you don't want people staring at you. I was getting the stares, the whispers, it took me a long time to be able to walk in the mall because of the stares and the whispers. And then people just being ignorant to what the disease is.

Tonja: And so that's why I started educating. So when I would go in a store and I'd see someone staring at me, I'd let them know, “It's just vitiligo, it's not contagious. It's a skin disorder that causes me to lose the color of my skin.” And once you start doing that, then people understand what it is, but then you still have others that… I go in the store, I give the cashier my money to buy something, and in return, they throw my change on the counter because they don't want to touch me. So I've experienced that on several occasion.

Jennifer: I understand that. Not from the same skin issue, but I had awful rashes on the palms of my hands, and people did not want to shake my hands. They thought I was infected with something and they're like, “Oh, we don't have to shake.” And I was like, “Okay. You don't want to touch me now?”

Tonja: Yes, yes. And we get that a lot, and it's so sad because society is taught, when you see something that doesn't look normal, you react differently, but when people have vitiligo or any type of skin disorder, it could be psoriasis, at first, try to understand what the person is going through and how you might feel if that's happening to you. And so that's why we try to educate. We don't just educate the person with vitiligo, we educate the whole family and the community in which that family lives, because once they're educated, then it makes it a lot easier for those of us that are living with vitiligo to be able to go out in the community, to our grocery stores, to our churches, anywhere and feel comfortable.

Jennifer: Can I ask… And this might sound like an odd question, but are there any silver linings or blessings that you feel like going through vitiligo has provided you? Or maybe anyone in your… You've heard stories from your support group?

Tonja: Yes. So for me, starting and founding Beautifully Unblemished actually helped me get through to loving and embracing the skin that I'm in because I know it's not a death sentence, that I know it's not something that's going to kill me. It's emotional and mentally challenging, but overall, it's not something that's going to kill me. It's not like I had a cancer and there's no cure for it. Obviously there's no cure for a vitiligo either. But I learned to embrace the skin and accept the fact that, I have vitiligo, now what am I going to do to help others that may not be in the place that I'm in?

Tonja: And I've heard stories on top of stories from members, from people that meet me, how inspiring I am that I can share my story, I'm transparent. And they love that because I'm honest with them. “This is what I'm going through. You may see me smiling on the outside, but on the inside, I'm dealing with the emotional effects of having vitiligo.” And so it has helped so many people come out of their shell, come out of isolation because we had members that they would not come out. They wouldn't engage in crowds. It was just something they wouldn't do. And now we have members that are coming to our meetings, they're not covering anymore.

Jennifer: That is so empowering to know that some… I can imagine being in someone's shoes where you feel so afraid for people to see something that's happening to you and you can become almost like a hermit, it sounds like, from some of the experiences that people have shared. And to have that weight, that fear, that shame pulled away, or maybe you realize it wasn't there in the first place, it's in your head, that's a beautiful experience to be able to help facilitate for someone else. It really is.

Tonja: Right. I remember the first day that I went without makeup and I felt so free. I felt like I had taken this mask off that I'd been hiding behind. And you have no idea how free I felt. I felt like a butterfly being taken out of a jar and I could just fly and I could be who I am. And it was just so enlightening for me, and so uplifting that I could do that for me and I didn't have to hide behind a mask anymore. So I was grateful that I decided no more covering, I am who I am, it is what it is. Vitiligo does not have me, I have it. And it's not going to take control of my life.

Jennifer: I love that. I want to ask. So if someone is listening to this and they maybe haven't gone to a doctor, they suspect, they've looked online, they've done some Googling, what are some important things that maybe someone pretty new to… Maybe not quite diagnosed or newly diagnosed, do you have any words of wisdom that you could share, whether from your experience or things that you've learned from leading the group?

Tonja: Okay. So first thing, if they haven't been diagnosed, the first thing to do is just go to a dermatologist, their local dermatologist, and get diagnosed. So that way they can calm their mind that, “Okay, this is what it is. This is what I need to do,” because there is treatment. There is treatment, there's no cure, but there is treatment that gives a temporary relief, I would say, for someone that has vitiligo. And it can slow down the process of vitiligo if you get treated earlier.

Tonja: So I would tell them, get involved with the support group, because being in the presence of other people that are going through vitiligo or experiencing vitiligo has been one of the most amazing things that I've ever experienced. And even for the patients that are a part of our group is having that contact with somebody else that has vitiligo, then you can hear their stories. You can share your story. There's no judgment, it's a safe zone that you can come and share, and you don't have to feel like you're alone because we all are there sharing the same disorder, which is vitiligo.

Jennifer: And is there anything that you find is helpful for a patient to advocate for themselves better? I kind of notice sometimes clients are afraid to ask questions and they're afraid to maybe even question a doctor or ask for something, do you have any tips for how someone who might be dealing with vitiligo could better advocate for themselves?

Tonja: So, first off, one of the biggest problems that we see in the dermatology arena is that most doctors just kind of brush it off as it's cosmetic, that it's not a disease, it's just cosmetic. It's just something that's happening to your skin. But those of us that are living with it, we know it's far more than just cosmetic. It's not cosmetic. We didn't wake up one morning and say, “Okay, I want to be white,” or wake up one morning and say, “Oh, I want my skin whiter than what it is now,” for those that are Caucasian and that have vitiligo.

Tonja: So one thing I would say is find a dermatologist that is empathetic, and that is understanding of what vitiligo is, how the symptoms affect you mentally and emotionally. And just when they go in, just ask as many questions as they can. Sometimes I like to write my questions down when I go to see my dermatologist, that way I don't forget anything. And for our patients, we have FAQ where it's frequently asked questions that they can go and they can ask the doctor about the treatment, about what symptoms, “How is this going to progress? How is vitiligo going to progress? Is it going to stay minimal? Maybe to my legs and to my arms, or is it going to spread?” And sometimes those dermatologists that are… Especially those that are doing research, they will know the answer to those questions.

Jennifer: And it is important to ask questions. And I think too… I don't know if you've found this, but I do know sometimes people freeze up when they go to the doctor. And I feel like if you do, it's good to bring somebody else with you who can help ask questions.

Tonja: Right. Who can help. And who can remember what those questions are. And so we have a medical advisor that sits on our board and our group, and he is a dermatologist. He also does research and he does clinical trials for different dermatology, like vitiligo, psoriasis, lupus, all those autoimmune disorders. So from time to time, we'll have him attend our meetings. And that's an area where people can come in and they can ask questions and he'll answer them to the best of his ability without them having to go sit in a clinic, in that type of setting. But it's in a form where they can ask questions and he can answer them right on the spot for them.

Jennifer: It's interesting how, when you have a safe space for people to just be themselves, it's interesting how you can get so much benefit out of that, mentally, emotionally, and even just information wise to be able to ask questions without feeling like you're asking a dumb question or being judged and-

Tonja: Right.

Jennifer: So you would recommend it, I know you already said this, but I do want to underscore this. If someone is diagnosed with vitiligo, you really feel that a support group would be an excellent addition to their processing and this type of diagnosis essentially.

Tonja: Oh, yes. Most definitely, because we've seen where it has helped individuals, from children all the way up to our elderly adults. They come to our meetings and they're so excited. They're ready to learn, they're ready to share, and especially now with COVID, a lot of people were isolated. They couldn't come out. So them now being able to come out and share and fellowship with others and just hear other people's story about what they're going through has actually helped them learn to embrace the skin that they're in.

Jennifer: And do you ever invite family members or significant others into the group as well?

Tonja: Oh, yes. We don't just focus on the patient, we focus on the entire family. Siblings, they come to our meetings, husbands, wives, significant others, grandmothers, aunties, everybody attends our meetings because they're either a support for those individuals that are living with vitiligo or they want to learn more about what.

Jennifer: That is so amazing that you've created this. It's a beautiful transformation. Like you said, you felt so depressed, so alone, and you could have stayed in that dark space, but you transformed it into this amazing experience that is helping others as well. When I heard about what you were doing, I just said, “We have to have you come here and share this because not only…” Hopefully it will inspire maybe other people in their local towns to also create support groups, but maybe someone who's local to you can join in. Do you have people from other areas virtually join or is it generally people who live in the area where you are who participate?

Tonja: So our support group is the only support group of its kind here in Florida. Yes. So from time to time, we'll have individuals join in from all around the world. We've had them join in from the Caribbean, Jamaica, Haiti. We've had them join in from all over for our virtual meetings. And we've actually had individuals come in from Canada where there's no support group there, they've come in and they've joined in, in our meetings as well. So we cover the entire State of Florida and we do have others from other states that join in from time to time. And from other countries.

Jennifer: The best way for people to reach out to you and to check out what you're doing, and if someone is really interested in the support group… And I urge each and every one of you, if you know someone with vitiligo, this is a good episode, not only to share with them, but also to encourage them to go check out beautifullyunblemished.com, is the website, and they can reach you through there, as well as your Instagram and your Facebook page. Is that correct? Perfect.

Tonja: Correct. Sorry.

Jennifer: You're okay?

Tonja: Sorry.

Jennifer: So I just want to thank you so much for being here. This has been such an amazing conversation, and I'm so glad that we found you because the world needs more people like yourself and all the people that you're also inspiring and lighting up to… It's just beautiful, Beautifully Unblemished. You've released that sense of shame and whatnot that comes along with what you're experiencing and that's an incredibly powerful thing to facilitate, not only for yourself, but for other people. And I just want to thank you so much for doing this work.

Tonja: Well, thank you for having me. I appreciate this, because the more information that is shared, the better off it's going to be for an individual living with vitiligo.

There IS treatment. There's no cure, but there IS treatment that gives a temporary relief, I would say, for someone that has vitiligo. And it can slow down the process of vitiligo if you get treated earlier.