By Nikki Baldauf, Associate Production Editor at Bloomsbury Publishing
Shelly Maio and Marcy Vanwinkle are twins who live in the Cleveland, Ohio area. One has alopecia areata, one doesn’t. Shelly discovered she had alopecia at age 28, while serving in the Army. Today, she is a 45-year-old nuclear medicine technologist who shares her story with us, and offers some advice to those who are just learning they have alopecia. Her sister Marcy also works in the medical field, and adds her perspective of Shelly’s experiences.
Shelly: “I first learned I had alopecia while I was in the Army.”
“I had it as a child, but the funny thing was I didn’t know. I remembered as I was growing up that I was bald when I was really little but no one had ever put a name to it. At that time, I’d also gotten ill and my parents took me to the doctor, and it turns out that I had a large benign tumor on my sigmoid, so I ended up going into surgery for that. I don’t know if there was any connection, but it happened to be at that same time that I was bald. My hair grew back before I went to kindergarten, and though I always had hair where people could see, my hairline started way up, closer to the crown of my head. But no one ever knew because I wore my hair long.
“I grew up and joined the Army, and probably about a year or so before I got out of the Army, my hair started to fall out again. I had given all my medical records to the military when I joined, so when I went to see the doctor about my hair falling out, he looked through them and said, ‘Well, you have alopecia!’ and I said ‘What are you talking about?’ He said ‘You had it when you were little, it went into remission, and now it’s back.’ And that was the first I’d ever heard of it.
“You couldn’t really tell I had it while I was still in the Army. My hair started to fall out shortly before I got out, so I still looked normal to everyone while I was in the military. I didn’t have hair in the back of my head and I had to wear my hair up, but I found a way around that. I would just take my hair, put it in one braid, and just tuck the hair under, and no one ever knew that my hairline was much higher than it was. So it never really affected my military [experience] at all. It didn’t come into play until I’d gotten out and when people started seeing it falling out, and that made me kind of uncomfortable. Actually, when I ran into a friend that I’d lost touch with, someone I’d hiked, white water rafted and kayaked with, there was not a lot of hair left on my head. I know I did not warn him, and I kind of wish that I had, because he saw me and he totally freaked out. And that’s when it hit me very hard. I was in denial up until that point, and when that happened I just lost it. I kind of had a little meltdown. I called home—I was living in Washington State at the time because of the military—and two of my sisters flew out to give me support. And I guess that was when I started to come to terms with it.
Marcy: “I flew down there because she was by herself.”
“Shelly had found out that in fact this was something she’d had her whole life, and she was told that she’ll probably never get her hair back … and that she was lucky to have gotten her hair back after she had lost it the first time. The worst was at the very beginning, flying down and trying to convince her to come to grips with it, and that she needed to shave off the rest of what she had and wear a wig. She hadn’t accepted it on her own because she was just down there with friends, she didn’t have any family. That was bad.”
Shelly: “My family is a very good support system, and so were my friends in Washington.”
“I have three sisters. When two of them happened to fly out when I had my meltdown, that made me feel a little bit better. My family was a very good support system even though it was from a distance; I have some great friends in Washington state that honestly treated me no different, didn’t freak out, and they tried to make sure I knew that it didn’t change me as a person, that kind of thing. So I do, I do feel that I had a good support system, absolutely. And my twin, she was my biggest supporter. She was with me through all my ups and downs and helps me get through my rough patches.”
Marcy: “We’re very close — we talk about everything.”
“Most people kind of shrug it off and don’t deal with the fact that, emotionally, Shelly is now wearing a wig and it makes a difference. They say ‘Oh, you can’t tell it’s a wig!’ and stuff like that, but they don’t help her deal with it. So we talk a lot, we talk about a lot of her feelings. And I’m the one who got her to go to the water park. I said, ‘Just because you have a wig doesn’t mean you can’t go to the water park!’ Maybe three years ago, she went with a friend to Geauga Lake where she hadn’t been since we were in high school. She actually went without a wig and put a bandana on her head. So that was HUGE, it was a huge step for her to be out in public without her wig on, because once she started wearing a wig then she didn’t want anybody to see her without it.”
Shelly: “Having alopecia has affected my romantic life the most.”
“People always say there’s a guy out there that won’t care, but I haven’t met him yet. But I also hold back quite a bit. Many days I’m fine with it, I have a positive attitude, I tell myself it’s only hair and who cares, it doesn’t change who I am and people still love me. And then I have those times where I don’t like to look at myself in the mirror. I have good days and bad days. The woman who cuts my wig, she had this as well, but she had universalis and she’s had it since she was a teenager, so it was a much more traumatic thing for her. I told her, ‘You know, after 14 years you’d think I’d be used to this and OK with this and get on with my life,’ and she told me it’s been 25 years for her and she still struggles with it sometimes. So I think for us all—the women that have this—it’s an ongoing thing that we have to come to terms with. It’s nice to meet other people who have it, because then you feel like you’re not that only one that’s going through it.
“In fact, it was my wig lady who got me involved with Bald Girls Do Lunch. She had asked me one time if I had ever heard of them, and I laughed, because I hadn’t but thought that was kind of a cool name. I had signed up with Thea to get newsletters or emails sent so I knew when they were going to have get-togethers, and then I ended up finding Thea on Facebook. It’s a very recent involvement, but the one time we met I really, really enjoyed it. It was nice to talk to the other women and to hear everyone’s story. Everyone had their own story and different issues they are overcoming. And it was exciting to go to the event because I wasn’t going to be the only woman in the room with a wig on [laughs]. Thea didn’t have a wig on, and I thought that was awesome of her. If I ever get to that comfort level, that’s great, but I’m definitely not there yet. But to be in a room with other people that have the same thing—I was very excited and I thought it was great.”
Shelly: “I’ve become a low maintenance gal.”
“I definitely view alopecia in a different frame of mind now. I find myself a lot more saying, ‘It’s really not that bad, it’s really not that big of a deal.’ But it was a very slow change, it was a long time coming. And even though I still have my bad days, I have a much better attitude about it now. I’ve gotten to the point that I like the fact that I wash my wig at night so that it dries through the night—it’s not human hair, it’s manufactured, so it can’t have any heat applied to it. I roll out of bed in the morning, I throw on my scrubs, I throw my wig on and I’m out the door! [Laughs]. So there are some positives. My sisters will laugh about that, they get the bed hair and they have to take a shower in the morning because their hair is sticking up in all directions. I do remember those days—vaguely!—but I don’t ever have that anymore. So there are definitely some advantages.”
Marcy: “I think Shelly’s lightened up a whole lot about it over the years, but it took a lot. It’s hard.”
“I remember saying to her, ‘Shel, there are days when I would give anything to just take my hair off, put it on the nightstand, go to bed and get up and pop it back on my head!” At one point, I remember saying to her, ‘I don’t know, maybe if this were to happen to me, I might decide to be a little crazy and maybe after I get a wig, then a couple of months later I might pick something in a different style, and just wear different styles. What do you care?’ I asked her. ‘Try to have fun with it.’ She said no way. Because she and I are so in tune, we can talk about things like that. She has no problem being around me without her wig on.”
Shelly: “The turning point was Thanksgiving Dinner 1998.”
“It took a long time, over a year, maybe even a year and a half before all [my hair] finally fell out. It was November of 1998—I had a teeny little strip at the top of my head, and I thought it looked stupid, so I shaved it off, stuck on a baseball cap, and went to Thanksgiving dinner at a friend’s house. So that’s my anniversary, and I have not had hair since. This November will be 14 years. And it’s just the totalis—I have eyebrows and eyelashes, I have to shave my armpits, but I have no scalp hair at all. I did not get a wig until after it all fell out.
“It was hard when I shaved off that last bit of hair, actually. I kind of wanted to hang on to every last follicle as long as I could [laughs]. But I guess it was kind of liberating. But it was hard up until that point. I was definitely in denial.”
Marcy: “To this day, when she gets a new wig, it’s a very hard day for her, because it's like she has to accept it all over again.”
“There are times when, if Shelly gets a new wig, she’ll cry for a couple of days. So I know that what I have to do is, I’ll just look at her and say, ‘Love the color, love the cut. It’s a nice wig, Shel.’ And I end it at that, don’t go on anymore, don’t make any extra comments, don’t do anything. I’ve just learned that that’s what you have to do with her, you have to give her a week or so to get used to the new wig.”
Shelly: “I’m a nuclear medicine technologist and will share my story with a patient if it suits the situation.”
“I have found that alopecia has affected my work, absolutely. I’m still a nuclear medicine technologist—I did that in the military — so I’ve actually been doing nuclear medicine for 17 years. And I deal with a lot of cancer patients who have lost their hair and it’s a very emotional thing for them. Since I don’t have cancer and I try to tell myself that my situation isn’t so bad, but the cancer patients say the hair loss is the hardest thing for them. So a lot of times I will tell them, ‘I understand what you’re going through because I also don’t have any hair.’ And that seems to do things to some of the patients; they’re just shocked and they just kind of feel like it’s neat that I shared that with them. Some of them hug me and some of them cry. You can just tell sometimes that it makes a person feel better that I can identify with them, that I can understand and sympathize with that aspect of their disease, with that process. I’m more than happy to share with someone for that reason because it does seem to make them feel better. I love working with patients, actually. I love working with people [laughs].
Marcy: “I wish she could accept it more.”
“Shelly’s one of the most wonderful people you’d ever meet in your entire life. She’s got the biggest heart in the world. She’s just a very fun, loving, outgoing, wonderful person, and she’s come a long, long way with it.”
Shelly: “Not having hair doesn’t change who you are.”
“If I were to say something to someone who’s just learning to deal with alopecia, I think it would be that I would have done a lot better at first if I had had some kind of counseling … someone to talk to you, to try to keep you focused on the fact that not having your hair does not change who you are. I think that is the most important thing. I almost wish that when you were diagnosed with this, be it universalis or totalis or areata, and you know you’re losing your hair—whether it’s happening quickly or over a long period of time like with me—they had a place where they’d tell you, ‘OK, this is what you have, this is what’s going to happen,’ and then they give you the names of some counselors in the area or hook you up with a support group in the area. And give you some connections to help you find wigs—and that was very hard for me as well, trying to find a wig. I went into that first wig shop with my sisters and I put one on, I burst into tears and I ran out of the store.
“I didn’t know what to do or who to go to. It was just a fly-by-the-seat-of-my-pants experience. Basically my doctor just said, ‘Yup, this is what you have. See ya! Good luck!’ I think it would have been much better for me had it not been that way. So get some guidance, get some help. I try to stay positive; I really do think that that makes a huge difference to your attitude!”
Bald Girls Do Lunch is the only nonprofit created specifically to help women with alopecia areata cope, gain confidence and feel a sense of community.
