Taylor Muhl is her own twin. No. Really. Unbeknownst to her, at the beginning of her pregnancy, Muhl's mother had two fertilized eggs in her womb. But, at some point in the pregnancy, the two fused, creating one fetus with two complete genetic codes, that is, two completely separate strands of DNA. That is the definition of chimerism. Taylor Muhl is a chimera.
Muhl has two immune systems – hers and her sister's. Hers is constantly trying to rid itself of the “foreign" system. But, of course, it can't. The result? Autoimmune issues and flare-ups, as well as a variety of allergies. Muhl has two blood streams as well and a line down the center of her stomach, one side of the line darker than the other. The darker skin tone is her sister's.
It took Muhl many years to want to tell her story. For one, she says, because she only found out a short time ago. “For more than half my life I didn't even know I had chimera. I was told I had a birthmark. My mom was like a flower child so she had me naturally at home with two mid-wives. Her whole pregnancy she ate all fresh, healthy food, no caffeine.
Photo Courtesy of Keith Berson
She went above and beyond to do everything right. So, when I came out and my stomach was like this she was immediately like, 'What did I do?' The midwives had never seen anything like it. They said it would probably go away. They took me to the doctor a few months or a few weeks later and it was the same thing. It must be a birthmark. They said, 'It doesn't look like its causing her any pain.' So, my mom just went with it."
But there were other signs too, like Muhl's obsession with being a twin. “From six or seven-years-old, I would ask my mother all the time if I was a twin. 'Are you sure you didn't have another baby?' I would ask her. Many years later, my mom told me she wondered back then, 'Where is this coming from? Why is she asking me this?' I had a friend who was two years older who basically lived with us for eighteen years. I insisted on everything being the same with us – clothes, hair. And if she did it, I had to do it too. I did that with lots of other friends too until I was fourteen or fifteen-years-old."
Muhl is in her thirties now and says she didn't really think much of the line down her stomach when she was a kid. “I never really noticed it. It wasn't until I was a dancer around eight, nine, or ten that I realized why doesn't every body's stomach look like that. Mom said you're just special. If we went out into public, as I got older she made sure it was covered so no one would say anything and upset me."
But when she was in her early teens, she started getting sick all the time and no one could figure out why. Doctor after doctor would turn her away with a shrug and a, “We just don't know." “I started having autoimmune issues. I'm very sensitive food and medication. I'm allergic to bug bites on one side of my body but not the other. My belly button piercing is on twin's side and I can wear any jewelry in it. But the earrings on my side, I can only wear white gold because my skin is very sensitive."
Many years later, after extensive testing, one doctor finally figured it out. Muhl is a chimera. Interestingly, not every person with chimerism has the same issues and symptoms. Every case is different, which is what makes diagnosis and management so incredibly difficult.
Photo Courtesy of Keith Berson
“After all of these tests we discovered – and this is crazy - my immune system is as low as a cancer patient, but I'm not 'sick.'" She is, however, allergic to nearly everything. After being tested for 150 different allergens, only a handful came back negative. Shellfish, she says is the only thing that seems to give her life-threatening symptoms, the rest cause varying degrees of discomfort. So, she says, “I do a rotating schedule in terms of eating and drinking so as to not expose myself to too much of anything at one time."
How does she handle it all? Well, she says, as holistically as she can. “I was raised very naturally and because my body is so sensitive to medications, unless I'm really, really sick, I do things holistically. That's what really, really helps me. I have to eat all fresh organic food. I have to juice multiple times a week. I'm taking tons of supplements. I've been a dancer for twenty years. So, I'm very into exercise, which helps. I do have to be on birth control because of endometriosis, which is terrible for autoimmune issues because birth control lowers your immune system. And I do suffer from horrible migraines. So, I will take an Excedrin if I have to."
Once she had the diagnosis, Muhl still kept the information mostly to herself, sharing it only with family and friends for the past seven or eight years. “Being in music and modeling and entertainment, I was scared of losing or not getting jobs. If they find out you're sick, they're not taking a chance. 14 hour days, all night shoots, big investors, I could be considered a liability," she explains. “My career was so important I never wanted it to hold me back or limit an opportunity."
But the secret became too much to bear. So, Muhl decided it was time to come clean no matter what the consequences might be. “I got to the point of – what am I doing? If people don't want to work with me, then it's not the right thing for me. Right people will come and wrong people will go their way. I can't pretend that my autoimmune system is ok and that my stomach looks like everyone else's."
She also felt a strong pull to raise awareness about this little-known diagnosis. “There's a reason I was born this way and maybe it's to help or inspire people," Muhl says. And it's already working. After having appeared on the show The Doctors, Muhl started hearing from all kinds of people with all kinds of stories.
“I feel very grateful that my story is being shared. I have so many men and women who reach out to me. They say, “'You make me feel beautiful.' And that's the whole point, not just to help someone who may be a chimera but also to spread body positivity. I know there are a lot of women out there doing that and they are amazing. But there is no one has out there with chimerism doing it. So, it might as well be me."
Her coming out had another interesting – and personal – benefit as well. Always one to look on the bright says, Muhl explains, “When I went on the Doctors show it was like – I'm free! Now when I date a new guy I don't have to worry about telling them anything like that I wear hair extensions because my hair has gotten so thin because of the auto immune issues."
Of course, plenty of judgment and rejection followed her appearance and coming out as well. But even that didn't faze Muhl. She's glad she made the leap out into the public eye. “It feels freeing even though the negativity can be scary at times. It doesn't matter what you do in life, people are always going to judge. Family judge family. It's just life. And if you're doing it publically, it's going to be magnified. I've gotten an overwhelming amount of stuff and nasty stuff as well. You really do have to know that that person is where they are and they are entitled to their opinion.
Others who are really insecure have to find a way to put others down and I have no judgment against them. It's hard to put yourself out there. Some people are not comfortable with different. I'm ok with the hates because that's just where they are in their life. I don't know their story. You just have to focus on doing your best and being who you are." Muhl is a beautiful example of doing just that.
On an interesting side note, Muhl's grandfather was the VP in charge of production at Universal Studios for more than 30 years. She loves to share that tidbit because she says, she is insanely proud of the work he did. But she does want to set the record straight as rumors began to fly as soon as she shared that part of her family history. “I have never had a dime from my grandfather or any other family member. I have never had any handouts from anyone in the business. My grandfather started at the very bottom sweeping floors.
He is a self-made man who came from nothing. He was the simplest man. He had so many offers to do all of these amazing things and he really only took the ones he had too because of obligations. When he passed away, he left my dad and some others very little money but none of that came to me. It's been really frustrating that people think I'm taking advantage, as if I'm filthy rich and getting all of these handouts. People can say what they want, but this is the truth. I'm just honoring him for his work in the arts. I want him to be recognized for everything he's done."
Part of sharing her story had to do with people's responses to her coming forward and appearing on The Doctors. “So many people have said, I can't be a chimera because I'm in the entertainment business. 'She must be a fake because she was so comfortable on stage.' If I was a school teacher, then could I be a chimera? If I worked at an animal hospital? People who are the business are real people. Just because they are in the business doesn't mean they don't have diseases.
That's why I wanted people to know who my Grandfather was and that I've been in the business." But no matter the rejection, Muhl lets it just roll off her back. She says it's all part of being in the entertainment world. “I'm kind of like a firecracker. I've been in the entertainment biz for so long and rejection is such a big part. So, I have a very thick skin."
Taylor Muhl is her own twin. Her condition may be a tough one for people to wrap their heads around. But her message is a simple – yet powerful - one on so many levels. Be yourself. Be strong. Ignore the naysers. Be true to yourself. And – above all else - share your story – it just may be someone else's story too.
Gender divisions in sports have primarily served to keep women out of what has always been believed to be a male domain. The idea of women participating alongside men has been regarded with contempt under the belief that women were made physically inferior.
Within their own division, women have reached new heights, received accolades for outstanding physical performance and endurance, and have proven themselves to be as capable of athletic excellence as men. In spite of women's collective fight to be recognized as equals to their male counterparts, female athletes must now prove their womanhood in order to compete alongside their own gender.
That has been the reality for Caster Semenya, a South African Olympic champion, who has been at the center of the latest gender discrimination debate across the world. After crushing her competition in the women's 800-meter dash in 2016, Semenya was subjected to scrutiny from her peers based upon her physical appearance, calling her gender into question. Despite setting a new national record for South Africa and attaining the title of fifth fastest woman in Olympic history, Semenya's success was quickly brushed aside as she became a spectacle for all the wrong reasons.
Semenya's gender became a hot topic among reporters as the Olympic champion was subjected to sex testing by the International Association of Athletics Federations (IAAF). According to Ruth Padawer from the New York Times, Semenya was forced to undergo relentless examination by gender experts to determine whether or not she was woman enough to compete as one. While the IAAF has never released the results of their testing, that did not stop the media from making irreverent speculations about the athlete's gender.
Moments after winning the Berlin World Athletics Championship in 2009, Semenya was faced with immediate backlash from fellow runners. Elisa Cusma who suffered a whopping defeat after finishing in sixth place, felt as though Semenya was too masculine to compete in a women's race. Cusma stated, "These kind of people should not run with us. For me, she is not a woman. She's a man." While her statement proved insensitive enough, her perspective was acknowledged and appeared to be a mutually belief among the other white female competitors.
Fast forward to 2018, the IAAF issued new Eligibility Regulations for Female Classification (Athlete with Differences of Sexual Development) that apply to events from 400m to the mile, including 400m hurdles races, 800m, and 1500m. The regulations created by the IAAF state that an athlete must be recognized at law as either female or intersex, she must reduce her testosterone level to below 5 nmol/L continuously for the duration of six months, and she must maintain her testosterone levels to remain below 5 nmol/L during and after competing so long as she wishes to be eligible to compete in any future events. It is believed that these new rules have been put into effect to specifically target Semenya given her history of being the most recent athlete to face this sort of discrimination.
With these regulations put into effect, in combination with the lack of information about whether or not Semenya is biologically a female of male, society has seemed to come to the conclusion that Semenya is intersex, meaning she was born with any variation of characteristics, chromosomes, gonads, sex hormones, or genitals. After her initial testing, there had been alleged leaks to media outlets such as Australia's Daily Telegraph newspaper which stated that Semenya's results proved that her testosterone levels were too high. This information, while not credible, has been widely accepted as fact. Whether or not Semenya is intersex, society appears to be missing the point that no one is entitled to this information. Running off their newfound acceptance that the Olympic champion is intersex, it calls into question whether her elevated levels of testosterone makes her a man.
The IAAF published a study concluding that higher levels of testosterone do, in fact, contribute to the level of performance in track and field. However, higher testosterone levels have never been the sole determining factor for sex or gender. There are conditions that affect women, such as PCOS, in which the ovaries produce extra amounts of testosterone. However, those women never have their womanhood called into question, nor should they—and neither should Semenya.
Every aspect of the issue surrounding Semenya's body has been deplorable, to say the least. However, there has not been enough recognition as to how invasive and degrading sex testing actually is. For any woman, at any age, to have her body forcibly examined and studied like a science project by "experts" is humiliating and unethical. Under no circumstances have Semenya's health or well-being been considered upon discovering that her body allegedly produces an excessive amount of testosterone. For the sake of an organization, for the comfort of white female athletes who felt as though Semenya's gender was an unfair advantage against them, Semenya and other women like her, must undergo hormone treatment to reduce their performance to that of which women are expected to perform at. Yet some women within the athletic community are unphased by this direct attempt to further prove women as inferior athletes.
As difficult as this global invasion of privacy has been for the athlete, the humiliation and sense of violation is felt by her people in South Africa. Writer and activist, Kari, reported that Semenya has had the country's undying support since her first global appearance in 2009. Even after the IAAF released their new regulations, South Africans have refuted their accusations. Kari stated, "The Minister of Sports and Recreation and the Africa National Congress, South Africa's ruling party labeled the decision as anti-sport, racist, and homophobic." It is no secret that the build and appearance of Black women have always been met with racist and sexist commentary. Because Black women have never managed to fit into the European standard of beauty catered to and in favor of white women, the accusations of Semenya appearing too masculine were unsurprising.
Despite the countless injustices Semenya has faced over the years, she remains as determined as ever to return to track and field and compete amongst women as the woman she is. Her fight against the IAAF's regulations continues as the Olympic champion has been receiving and outpour of support in wake of the Association's decision. Semenya is determined to run again, win again, and set new and inclusive standards for women's sports.