Marisa Kimmel- Photographer, Model & Alopecia Activist

Marisa Kimmel is a Detroit based photographer, model, and alopecia activist. She does all of this while also navigating being a new mom.

She got super vulnerable with me in our latest interview about having alopecia, how that’s changed her and how she now works to help kids who have alopecia. 

I’m so grateful for her openness. We spoke about healing from childhood traumas, her journey through motherhood, and how her photography and modeling work goes hand in hand with Alopecia awareness.

Read on for some great advice on healing and moving through pain, as well as some awesome resources.

I always start out with asking people about their childhoods. What were you like as a kid? What was your childhood like?

I had a very traumatic childhood growing up. I don't talk about it often because it was things that I had no control over, as a kid. And it's other people's decisions and their lives that affected my entire life. I wouldn't change even the traumatic parts that had nothing to do with me… because it made me who I am today. 

My dad moved from Florida to Michigan… He was involved with drugs and alcohol from a young age, that was just his childhood. …..I had that as a childhood, my dad would fall off.

 Was that a constant theme or part of your childhood?

My earliest memory is I think I have one from when I was four and then the entire gap from when I was nine, when the first traumatic thing really happened from that entire stage in my life. 

Do you think you blocked it out? 

Probably, I think I remember certain things. I played sports and I danced, but I only remember those things because of pictures or my mom would tell me. 

My dad was back and forth with drugs and sometimes he wouldn't come home...

It was just me and my mom and my sister, she's four years younger than me. And then it was all of us and my dad stayed clean for a little bit. And then when I was nine he must have been involved with drugs for a little bit..That was the last time my dad fell off. He went to rehab and my dad's been clean since then.

Do you have a good relationship with your parents now?

Yeah. We're still working through that kinda stuff. Especially the older I get where I'm at now, I see it as differently now that I'm a parent. 

My dad's the best parent that I know, but he has this sickness…

When that happened with my dad and when I was nine, that was the first year that I had a bald spot; my alopecia. That was the year that I was diagnosed with hair loss. When I first started getting little bald spots or on my head, we went to the doctor. I was diagnosed right away. 

As a kid, I never thought that I would go bald and I didn't feel ugly or anything like that. But the medicine that the doctor gave me, I thought that I would take it or the shots I would get steroid shots. And I thought that I would be cured, that it was a quick fix.

But that wasn't that wasn't the reality. And my parents didn't know either because they'd never heard of this before. They were learning as, as we all were.

… And then I'm thinking okay, well then I'll look like everyone else. Like, that's what I'll do and it'll be fine. it was always just little bald spots that would come and go, one would start to grow in and then I'd get one on the other side of my head and I just put the medicine on that side. that was that for a couple years. 

And then now it's in middle school. That's kind of where I wanted to look pretty, I wanted to fit in. 

In middle school that's when I started to feel like I wouldn't be able to control the way that I looked as much as I wanted to. Especially at that age, you're wanting to change so much about yourself that you look like all your friends or a boy will talk to you. But with my hair, it just had a mind of its own. It was just going to do whatever it wanted, whenever it wanted. 

I think it was on Instagram where you were writing about how you would try to hide it constantly and wear headbands and you didn't want to do certain things like swimming. How do you think that affected you? 

I think towards the end of middle school is when…  because the worse that my hair got, the more I started to try to control it. The more that everyone was talking about their looks and social media was starting to come out then…. 

I had trauma that happened in middle school with a family member and he went away to prison; since I was little until after I turned 18. 

I felt I had to hide at that age too -  most of my friends had parents that were happily married and they had the cutest little, perfect families. And I felt different that I had these traumas, you know what I mean? I wanted to fit in so bad. I didn’t want to talk about any of it.

Yeah, behind closed doors, me and my family kind of dealt with those traumas and then I would go to school and, and put on a happy face… 

I was a kid, I didn’t know how to deal or how I was supposed to move on… There was never really a time that I was sitting at home. I was always super busy.

 I started high school and that's kind of where my alopecia just took over everything else that happened in my childhood with my cousin and my relationship with my dad.

And my alopecia kind of controlled how long it took me to get ready in the morning. If I missed my first class, then I would send my brother and sister.. And sometimes I just wouldn't go or your life or I would make sure to go before my mom would get home at one. But I would get up literally two and a half hours before I'd have to.

Did your close friends know about it?

Yeah. I went to a very small private Catholic school my whole life. And a lot of them knew that I had alopecia or I would get bald spots and they'd grow in. I was never bullied for it. And if anything, when I would play sports, I would feel hands go to fix that they would cover my bald spots for me, everyone knew.

Do you feel it was maybe more internal than other people?

I was the hardest on myself..

Sometimes it's harder when you're your own worst critic. I think it's harder to overcome that because you can cut negative people out of your life.

Like I couldn't get away from the negative thoughts surrounding who I was.

I know that now you seem very comfortable in your own skin, but clearly that was not an overnight journey. When do you think that finally started to change?

I met my husband when we were 19 and we were best friends for a year, before we even started dating. I think I had maybe less than half of my hair left on my head.. And I had the same hairstyles that I would wear every day until my bald spot would move and then we'd have to change it. 

I would just tell him, ‘I just want to cut it all off.’ And Drew was actually in barber school,  when we first met. I didn't even have to explain to him anything about why my hair falls out. When I started talking about cutting it all off it was like, “Ok, well, tell me when. And I'll bring my clippers.”

 And I think it was shortly after that and we were at his mom's house and I went into the bathroom, put my hair in a ponytail and I cut it off. And then Drew shaved my head.

That's crazy that you guys were able to do that together. It's really incredible.

I remember just looking at myself, like let me just do this. And I cut it off and it was the most when you sigh of relief, that weight was just lifted. 

I cut it all off when I was 19 and around my family and Drew and his family, I would just have my bald head. But when we would go out I would always just wear a stocking cap or whatever. 

And then the following year my cousin got out of prison. That was something from my childhood that was weird. Like, wait a second… he got out of prison and it was a lot of everyone trying to protect me. Which I get trying to protect me, but I was no longer a kid. 

I was 19. I found the excuse of, okay, well I'm going to move. I was going to move to Chicago and I got accepted into this art school and I'm going to do fashion marketing.

I didn’t know anything about fashion. I played sports growing up, I wore sweatpants and a cutoff every day. I don't know how to dress. Like, I don't know anything, but this is what I'm going to do. 

I was telling Drew that and he had graduated barber school and he said he’d move with me. 

We both moved that next summer. when we were 20, we moved to Chicago, we didn't know anyone. First time, living together, being adults and this big city, and then here I am kind of running from my childhood traumas and my alopecia. I come from a small city where if you look different, it's not okay.

A lot of people were saying, well, you can wear wigs, you can wear a hat. Moving to Chicago, it was the thing that I needed to become whoever I wanted to be, it was without the weight of those expectations.

I started googling about alopecia. All I saw were just the medical photos of people with alopecia.They're not beautiful photos. I felt really sorry for those people, what a miserable life. Like if all my hair falls out, I'm going to have a miserable life. 

I just  thought that once my hair fell out, that that was the end of my life. That I was going to be alone. I wouldn't get married, wouldn't have kids, wouldn't get hired, all this stuff. That's kinda how I lived, my teenage years planning for my life to be over.

When we moved to Chicago I knew that that was my new start. I could just be whoever I wanted to be without anyone questioning me. 

I always say that everyone in their early twenties should get out of their hometown. No matter how amazing your childhood was, you can't be a fully formed person. Whether you go to school or you go away to the military, whatever your thing is, you need to get out because you're never going to change  and grow as a person.

You need to see the bigger picture of life then your hometown, what you grew up around. Yeah, we moved to Chicago and I was a year into being , without any hair, but I was still self conscious. Like I think I wore my mother-in-law bought me a wig. I would wear that sometimes underneath my hat or I would wear my hat and I had a headscarf. 

I tried the wig thing. But when we moved to Chicago I started a job working at Urban Outfitters Surplus. It's the sales store of Urban. There's only one and everyone that worked there, we all called each other ‘the misfits of urban.’ 

I was wearing a hat when I started. After a couple of weeks, one of my new friends asked me why I always wore a hat. So we went into the fitting room and I showed him. He's like ‘Who cares? No one cares here.’ And he told me ‘next time don't wear it, it'll be fine.’ And that was it. I just stopped wearing the hat.

Awesome. Finding that group where you finally find you grow and be yourself is so important.

Those were my new friends and my new life and everyone was accepting in Chicago. Everyone's just different from my hometown where it was very small, me, my sister and my cousin were the only Mexicans in the high school, everyone else was white.

I think big cities give you that way to be kind of anonymous in a way, you know? Like there's just so many people, no one's sitting there talking about you.

Drew and I lived there five and a half years. And every time I would come back home though, I would get nerves and anxiety because I was going back to the city where I didn’t talk to anyone that I went to high school with. 

I just wasn't who I was in high school anymore. Even after just living there for a year, the longer I lived there, the more I was growing, into who I am.

Right. Which quite frankly, I think is a good thing. Like when people say that whole, ‘Oh, you've changed.’ That's the point, you're supposed to grow and evolve. I don't think you should be the same person that you were in high school.

Yeah. every time I'd go back home, I would, if I was to see someone, I would hide. I was nervous and it wasn't anything against them. I wasn’t ready and it was before Instagram was ‘let me tell you my whole life.’ Because that's kind of how I am now. 

Do you find that , as you've gotten older, because that's something I've found is that that's my favorite part of getting older, is not caring as much. I used to be so concerned in my early twenties about what other people would think of me. 

Yeah.  I mean it happens to me everyday. Like when I leave my house and I go out the way that I look without any hat, I don't hide my alopecia. I get comments pretty much every time I leave my house...people compliment me, but sometimes I feel that they think that I need it to make me feel better.

Most of the time I'm able to tell them ‘Oh, I have alopecia. It's just, my hair just doesn't grow, but I'm healthy.’ 

I had the choice if I wanted to wear a wig, if I wanted to cover it, I choose not to. And because I decide to walk I think the way that I look that makes people feel I'm allowing them to share this huge part of my life…. 

I know there's been a big movement with people that are disabled saying ‘don't treat me like I'm fragile and like my life is terrible.’ If you constantly look at people that are different from you as ‘they can't live a good life.’ No one wants to be pitied. It's not a good feeling. And it's very heavy.

I walk around because I feel most comfortable. This is how I feel “me”. My sister has alopecia and she feels most herself with hair... She wears the wig and that's how she lives her life. But just because we had the same disease doesn't mean that we have to live the same type of life. 

One thing I wanted to touch on because I'm super interested in this as I saw your work with the CAP (the Children's Alopecia Project.) Can you tell me more about that?

Growing up, I didn't have any support systems. It was me and my parents trying to figure it out as we went. With CAP, the founder’s daughter has had alopecia, from a very young age. 

He couldn't find anything for his daughter so he started a group for kids. It started out in their hometown; small groups would get together and the parents could talk about it with each other. Because it's also the parents that need support too. 

It's for the parents and for the kids, for the kids to see other kids like them. They started very small and now it's this huge thing, all throughout the US he goes to schools and talks, if a kid has alopecia, and they're not ready to speak up for themselves Jeff will come in and give a talk to the whole school, letting them know that it's okay to be different, not just about alopecia, but…  it's OK to wear glasses, to have a hearing aid, to have different color hair, different color skin, it's okay to be different. He does that and then there are the camps. 

I went to my first camp... four years ago… I was living in Chicago and I reached out and said ‘Hey, I'm not a kid, but could I come? I've never been around that many other people with alopecia, even if they are kids.’

He told me they were actually looking for a speaker. I was still very new to coming into my alopecia, not allowing it to affect my entire life. But I went to that and .... I did talks and I met the parents. Being able to have them see someone that comes out of it; that everything's fine. 

It's not easy, but it's not the end of the world. Life is still beautiful, even if you don't have any hair. 

Those pictures are really beautiful. 

When I would look up those photos of bald people and they were those miserable photos, not anymore, let me try to help them change the narrative. 

Whenever I was first taking photos, learning how to use my camera, I took self portraits of myself. setting up my tripod and newly, no hair, no eyebrows, because my eyebrows fell out when I was 21 or 22. 

Taking photos of myself, getting comfortable with being in front of the camera, seeing myself that up close and being able to post those online, show people, you can still be happy and, and look different.

Right. And I think our biggest growth comes from those places of discomfort and pushing against that fear.

I was very vulnerable... to post those photos where I'm still getting comfortable with looking at myself in the mirror, but let me put it out there.

And not knowing the reaction you're going to get. 

Yeah. But now having people take my picture or taking my own pictures, this is just the way that I look and I've never felt more comfortable in my entire life. I couldn't see myself with hair. Like my alopecia, if it decides to stop and I grow hair, I'm going to be upset.

This year is different because we weren't able to go to the camps, but still had a zoom session and I gave a speech and updated people on where I'm at, in my self-love journey and my personal and professional life. I still got married, I still had a baby. I still get hired to do things. And I have a very incredible full life, you know? 

Because I , as a teenager, I was growing up, preparing myself for this awful life and I’m living the complete opposite. 

I know motherhood is such a big part of any woman's life, what has that meant to you and how do you feel that motherhood has changed you?

I think because before I had Abraham, I was putting in the work to heal from my past traumas that weren't my fault. The things that I couldn't control, my alopecia, that there's no cure for. 

When we decided to have a baby, I was putting in all the work so that when Abraham came into our lives, I was able to be open. And show him that it's a forever thing. I don't think you can ever stop healing yourself.

 I agree. It's really inspiring to me that you're open about the whole motherhood thing. One of the things I really do like about our generation is that openness, as hard as it is to go through those things. It's better for you, your son, your family because that whole culture of past generations of secrecy and hiding things is toxic and awful.

Yeah, because when I was a child going through those things, it was behind closed doors. I think because my parents didn't know any different. Because that's how they grew up, but I'm still talking to my parents about their childhood, right? Because there's gonna be things that Abraham goes through or we go through as parents that we're going to have no control over. 

With Abraham,  they're able to do things that they didn't do with their own kids. I think to relate to them or see things differently with a more open mind, like for example that Abraham hasn't had his first haircut yet.

I have to remind my parents and my husband's mom that you don't get to tell Abraham who he is. When he's able to tell me that he wants a haircut or he wants to wear certain clothes, he wants to do this certain thing, I don't want anyone to tell him no.

Right. You don't want the outside world to be dictating that, especially from such a young age.

I went through that… like no girls are bald.

The other thing I know that you speak about a lot on Instagram is your breastfeeding journey. Why was that important to you to be open about?

In the beginning, when I was pregnant, I planned on breastfeeding. I didn't have a set date... I just knew that I was one of those people where breastfeeding is free, but I didn't realize that my time; emotional, physical, mental, all of that, it’s not free.  

It came as natural as it could at first, but you know it hurt and it took a lot of time trying to figure out pumping. I didn’t know anything- I didn't even know how to hold onto a newborn when Abraham was born. 

Learning everything, how to take care of a brand new baby by myself, my body's broken. My husband and I, we only saved enough money for him to be off of work for a week and a half. And after a week and a half, he went back to work full time and there I am trying to figure out why my boobs are leaking all over the place, why they're hurting. 

Then there's this newborn baby who needs to be taken care of. On social media, I would ask for help when I needed it or advice when I wanted it. There were these moms who had gone through it. A lot of them were saying ‘you do what you need to and if breastfeeding is not for you, then there's other ways to feed your baby.’ 

Knowing that if it was becoming too much for me to handle that I had options. The guilt was still there,  to give him all the antibodies, all that nutrients that he gets naturally from my body. Every mark, the three months to six months and every time I would hit it, I'd think, do I want to keep going?

Sometimes a really hard week would be happening and I’d think I'm going to be done after this week. And then it would go back to being easier to feed him. Then I started pumping at three months and that gave me more time to have my body back to me, because I wasn't feeding a baby every three hours... 

When he was six months old and it was right before I turned 26 and off my parents' health insurance. My OB suggested a genetic test for the BRCA gene. 

She suggested I get this testing done because breast cancer runs strong on both sides of my family. The BRCA mutation, it brings your breast cancer percentage up to 80%. When you test positive for that, your breast cancer percentage goes up and so does your ovarian. 

When I went in she told me that there were preventative measures or that I could come in every six months for the breast cancer screening and the ultrasound for ovarian cancer. .. You can keep breastfeeding, that's a preventative measure for breast cancer or you could have the mastectomy and the hysterectomy.

I've been through all of the stuff that I've been through. This was the easiest decision I could have made. I'm like well you can take them. There are things that I don't need to live, like my hair. 

I'll have the mastectomy, after Abraham's done breastfeeding, but because breastfeeding is a preventative measure that just pushed me to go through not wanting to stop breastfeeding because emotionally I don't want to do it anymore. But my option is if I stop, then I have to have that surgery. 

It's such a weird time right now... I know they keep opening and then closing hospitals and going back and forth about having elective surgeries. 

It's the healing, weeks of healing. I won't be able to take care of myself for the first couple of weeks, getting out of bed, lifting my arms. My husband and I both having to take off work is a big decision. 

This whole COVID thing has really shown how undervalued mothers are. I lived abroad for years and it just always was wild to me. How different Europeans always viewed motherhood and the state supporting that journey there.  And then talking to people back in the States about things like maternity leave and I was shocked. 

I worked until I was 41 weeks pregnant… clocking in those hours so that when I had a newborn, I could spend that much more time with him. Because that's what I wanted. I had to work those 41 weeks all the way up. 

I feel I didn’t have a choice. Like if I was to quit my job, then I wouldn’t have gotten maternity leave anymore. How am I supposed to take three months off of work? And pay my bills and take care of a newborn when I'm not getting paid... I had to make those decisions and I mean, it was fine.

Society isn't set up to start new parents off on the right foot… Abraham was planned. Like if we didn't have him before I was 26, then I don't know if we would have had a child, because I was on my parents' insurance and it's expensive to have a baby. Like I didn't want to go into debt to have a kid.

What advice would you give to your younger self? 

Knowing that when the hard times happen that that doesn't have to be your whole life.

Yeah. That, that period it will shape you, but it doesn't mean to define you.

That even the outside experiences that have an effect on you, that doesn't mean that you have to live with that on your shoulders your whole life. 

I have all this stuff... and here I am having to take care of someone. That's what I thought love was, that was my first experience of having to unlearn what love was with my husband because Drew and I started dating when we were 19. 

The first couple of years of us dating was a whole bunch of unlearning for me. Like realizing it's not my job to take care of anyone else. Letting me take the time for myself. And Drew was the best person to remind me that it's not my job. His happiness is his and mine is mine and we bring it together.

When I was 19, I remember my half sister telling me one day ‘you either have to accept the baggage meone comes with or you don't, you can't change them.’

And that still sticks with me. Whether it's a relationship or friendship  we're all going to bring our past trauma and baggage and that's what makes us who we are. But there are certain things that you either can accept about that person or you just have to let them go and move on. That's some of my favorite advice. What is the best advice you've ever been given? 

Drew telling me that only I can control the way that those kinds of things affect me. I think that's probably the biggest thing that I can take in my entire life, people's decisions that they make, even if they affect me, how I decide to deal with those things and heal from those things.

Or if I want to forget that it completely even happened that doesn't fix it. Doesn't make them go away. What kind of life that I want, and I think I just take that kind of every aspect of my life, professional and personal, my relationships with my son too. There's only much that I can control and that I can give and everything else is up to someone else.

I think that's great advice. If you can't change the situation, then you need to change the way you think about it. Do you have any books, podcasts, resources that you would recommend for people?

I am one of those people that when I'm driving in the car, I listen to podcasts and cry.. There's a couple, there's The Good Life Project. They just interview these people that have had hard upbringings or anything like that and now they're doing amazing things. Not only in their own life, but also to help others in their community. Terrible Thanks for Asking is another good podcast.

Where you can find her: 

Instagram: @marisakimmel @marisakimmelphotos 

Website: Marisa Kimmel Photo