A woman with alopecia who underwent a preventative double mastectomy is proudly sharing images of her bald head and surgery scars to remind people that there is ‘no right way to look’ and that all ‘bodies are beautiful and unique’.
Photographer and content creator Marisa Kimmel, 27, from Bay City, Michigan, was diagnosed with alopecia at nine years old when she noticed small bald patches on her head that would come and go.
Almost two decades later, the mother-of-one discovered that she had the BRCA1 gene mutation, which increased her risk of breast cancer by 80 per cent – and she decided to undergo a double mastectomy, a decision that she is now sharing with the world in order to raise awareness, and redefine society’s standards of beauty.
History: Mother-of-one Marisa Kimmel was diagnosed with alopecia at age nine, and recently underwent a preventative double mastectomy after learning she had the BRCA1 mutation
Proud: The 27-year-old is now showing off her scars and her bald head online to try and remind others that there is ‘no right way to look’ and that all ‘bodies are beautiful and unique’
Moving forward: Marisa says she spent much of her childhood trying to hide the symptoms of her alopecia, because she was worried about what people might think of her
‘I really just want to remind people that our bodies are beautiful and unique and different, there is no right way for us to look,’ she explained.
‘I lived so many years of my life to make sure that the world was comfortable with who I was presenting myself as.
‘I tried to hide, change, and fix who I was so that others thought I was beautiful.
Flashback: The photographer, pictured as a child before her alopecia diagnosis, learned that she had the condition after discovering bald spots on her head
‘I changed my entire life the day I decided that who I was, was absolutely enough.’
Throughout much of her childhood, Marisa tried a whole host of treatments which included special shampoos, creams, and steroid injections to try and relieve her alopecia symptoms with limited success.
Marisa would spend hours before school covering her bald spots with bobby pins, hair extensions, and headbands as she wanted to look like everyone else and believed she would never find love or get a job because of her baldness.
By the age of 19, Marisa had lost half of her hair and was incredibly self-conscious but at the same time, she started dating her now husband, Drew, 27, and fed up with hiding her alopecia, told him that she wanted to cut all her remaining hair off, which she did.
After a year of wearing wigs and hats, Marisa decided to embrace her alopecia once and for all and started to embrace her natural beauty and who she truly was. Marisa’s experience with alopecia helped prepare her for her latest journey.
On May 3, 2019, Marisa tested positive for the BRCA1 gene mutation after her doctor suggested she be tested due to her family history of breast cancer – and just six months after she had given birth to her son, Abraham.
A positive result meant that Marisa’s chances of developing breast cancer in her lifetime were increased by 80 per cent and for ovarian cancer, by 40 to 60 per cent.
Heartache: In May 2019, Marisa learned that she had the BRCA1 gene mutation, which increases risk of breast cancer by 80 per cent, and she chose to get a double mastectomy
Family: Marisa learned of her gene mutation just six months after she and her husband Drew welcomed their son, Abraham
Healing: The mom-of-one, pictured with her son, underwent a double mastectomy on February 4, and says she felt as though a huge weight had been lifted after the procedure
Marisa’s paternal grandma and aunts developed breast cancer at young ages so a positive result was devastating for her – but she was thankful for the options available to her.
On February 4, Marisa underwent a bi-lateral mastectomy without reconstruction in a decision that she says was right for her. Immediately after surgery, Marisa felt as though a huge weight of stress and anxiety surrounding cancer had been lifted from her.
Message: Having spent years trying to conform to society’s standards of beauty, Marisa (seen as a teenager when she would comb over her hair to hide her alopecia) chose to share her story to try and help others who worry about their appearance
Marisa has been sharing incredibly raw and beautiful pictures of herself on Instagram that document her incredible mastectomy journey and she hopes to show others that there is nothing shameful about being different and not conforming to social media’s airbrushed view of life.
She hopes that through sharing her story, that others who are going through similar situations can find hope in her journey and she also hopes to raise awareness of genetic testing for cancer – something Marisa didn’t realize existed herself prior to her doctor’s suggestion.
Marisa believes that this decision could have saved her life.
‘I started losing my hair when I was nine years old,’ she said.
‘I tried shampoos, creams, and steroid shots for years just trying to keep my hair from falling out. Nothing was working.
‘It wasn’t until I was 14 to 15 years old that I decided to stop treatments and learn to just hide it. I bought hair extensions, used bobby pins and hair clips to cover my bald spots and wore giant headbands.
‘I was spending hours before school trying to feel beautiful so the world would accept me. Some days I wouldn’t even go to school because I couldn’t get my hair to cover my bald spots.
Warning: Marisa, pictured with drains in after her procedure, hopes to try and raise awareness about genetic testing in the hopes of helping others
Devastated: When Marisa was told about her BRCA1 gene mutation, she says she broke down and ‘cried in her doctor’s arms’
New perspective: However she soon realized that the positive result actually gave her back some control – which she seized by choosing to undergo her double mastectomy
‘It got so bad that I would get out of the shower and turn my back to the mirror while I blow dried my hair because I couldn’t even look at myself. I was beyond exhausted.
‘The hardest part for me was being able to look at myself in the mirror and remind myself that who I was, was beautiful. That no matter what was on my head, how many bald spots I had, that I was still beautiful. I was never bullied for my alopecia growing up. It was always me against myself and that was really hard to face.
‘I started dating my now husband when we were 19 years old. One day, I brought up to him wanting to cut all my hair off because I was so sick of it controlling every aspect of my life.
‘It wasn’t long after that conversation that I went into the bathroom by myself, looked in the mirror and cut off my ponytail and my husband shaved my head.’
Marisa went on to discuss her BRCA test results.
‘My heart sunk and I cried in my doctors arms,’ she said. ‘I knew taking the genetic test for the BRCA mutation would hit me hard if it was positive but I also knew that I would have options and that allowed me to breathe.
‘I knew that having the preventative mastectomy was the right decision for me. I have watched many women in my family fight breast cancer and if I have the opportunity sitting right in front of me to prevent myself from getting breast cancer, I’m going to take it.
‘There was also the option of getting six month check-ups but for me, that would only bring stress and anxiety into my life.
‘I decided that I would have my mastectomy as soon as my son was done breastfeeding or in the beginning of 2021, whichever came first. January 2021 rolled around and my son was breastfeeding about once a day or less. I could feel that it was the right time.
Support: Marisa says her husband Drew has been incredibly supportive throughout her health journey, encouraging her to shave her head, and supporting her mastectomy decision
Inspiration: ‘Going into surgery, I thought about my son, reminding myself that my decision to have a preventative mastectomy was so that I was able to watch him grow up,’ she said
‘From the day I first met my surgeon to my surgery date, it was less than two weeks. On February 4, I breastfed my son for the last time. We went two years and three months on our breastfeeding journey.
‘Going into surgery, I thought about my son, reminding myself that my decision to have a preventative mastectomy was so that I was able to watch him grow up and to make sure that breast cancer wouldn’t take me from him.
‘After my surgery, it felt like I dropped 500 pounds of stress and anxiety. The day I received my BRCA1+ diagnosis and knowing that my percentage for breast cancer was eighty per cent and my percentage for ovarian cancer was sixty per cent, I carried that heavy weight of knowledge with me every single day, just hoping that I would never have to know what it felt like to have cancer.
‘I have shared my entire alopecia journey on social media. I have made the most beautiful friendships on Instagram. I am so, so grateful that I have a community on social media that gives me the space to just be myself. I hope that when people come across my page, they feel like they aren’t alone in life.
‘I know that by me sharing my life on the internet, I have never gone a day feeling like I’m alone in this.
‘I hope that when someone comes across my story or my posts, that they feel a sense of hope. Hard parts of life happen but that doesn’t mean you have to life a hard life.
‘My doctor suggested the BRCA genetic testing because my father’s mother and his three sisters all have had breast cancer at early ages. My grandma and my two aunts had breast cancer before the age of forty.
‘I didn’t know that genetic testing for cancer was even a thing I’d be able to have done. My doctor may have very well saved my life.
‘I 100 per cent have my hard days where I cry and feel sorry for myself and I never want people to think I am always positive. We are all human and to put that sort of pressure on ourselves will drive us crazy.
‘I can say that after losing my hair and having nothing but miserable days and convincing myself when my hair fell out that I would never get married or have a baby or be hired that I would live a lonely life. I knew that the life that I was planning for, was a hard one and that I was setting myself up for it.
‘I have the most supportive family and friends surrounding me and I know that not everyone has that, so if you are out there and you don’t, I am right here for you.’
Marisa always knew that she would share photographs of her mastectomy journey online ever since she received her positive diagnosis – and she hopes to empower people and show them there is no shame in being different.
‘The idea for sharing photos of my scars has been a thing since the day I got my diagnosis and knew I was going to have a preventative mastectomy without reconstruction,’ she said.
‘Social media can be filled with so many filtered photos of what life is. I wanted to share my healing because there is nothing shameful about what makes us different.’