Thoughts about hope and hemophilia...
Destiny Caithamer was a shy kid with low self-esteem. In an attempt to pull her daughter out of her shell, her mom, Celine Caithamer put Destiny in her first beauty pageant, where she was scouted by a photographer. Today the 25 year-old is an international model and pageant queen. Her Facebook page is decorated with gorgeous pictures from countless professional photoshoots and magazines. She is living a life that most girls could only dream of and many would envy. However, this is only part of her story and what lies beneath the surface makes Destiny feel less glamorous and more like an “alien: unique, misunderstood, and a bit of an anomaly.”
When Destiny started having unexplained bruises at the age of 5 months and was vomiting blood, her mom knew it was time to seek answers. It was initially suggested that she might have had leukemia. After a couple of visits to the Comprehensive Center for Bleeding Disorders in Milwaukee, the family was invited in for an educational session.
“They gave me all these words that I didn’t know, like von Willebrand Disease, factor VIII. I didn’t know about the clotting cascade. It was all new. It was all foreign,” says Celine. Destiny was diagnosed with von Willebrand Disease, as well as factor VIII deficiency. “I was relieved that it wasn’t leukemia. Second thing I thought of was that I was completely ignorant on the issue. I couldn’t even pronounce the words they were using.”
Destiny’s normal childhood, despite her bleeding disorder, turned into shock and confusion when she started school as she struggled to fit in. Her peers did not understand her disorder and thought because she had bruises on her legs that she was dirty. Some kids refused to play with her. It was difficult for her to be cast aside by her peers and she said she “always felt alienated.”
In third grade, Celine had someone go to school to talk to Destiny’s classmates about her disease. Afterward, the teacher had everyone put their hands on the table and told the class to look around for the student wearing the special bracelet while attempting to explain the disease. At a very young age, Destiny already knew the value of embracing her disorder even when others shunned her because of it. “Kids thought it was a scary, bacteria, or an illness they could catch. The way the teachers were describing it, if I were able to explain it to the class, I would have been able to explain it in my way, a way that kids my age would understand.”
Destiny’s experiences with her peers only got worse as she got older and switched schools. She was bullied; people pushed her down the stairs and stole her clothes. One kid saw her infusing in her car and started a rumor that she was using drugs. After a talk at her school about hemophilia, someone misunderstood the disease and started another rumor that she suffered from bulimia. Some parents heard the rumors and would not let their kids spend time with her. Her efforts to connect with her peers, advocate for herself, and educate others on her disorder seemed fruitless.
The trauma she endured from her bullies has left emotional scars that are not obvious in her photos, but are present nonetheless. “Since I was holding all that in, my way of telling everyone was to start acting out. I should’ve opened up to my family right away. I guess I was too embarrassed or wanted to handle things on my own. Even though you’re in high school, you’re a teenager, you think that you can take on the world by yourself, it’s really important to be by people who support you and love you.”
Despite these challenges, Destiny kept up the fight. Growing up as a girl with hemophilia in a time when the majority of people believed that only males could have it was difficult. Her frustration and sense of alienation were exacerbated by a specialist who told her she could not possibly have hemophilia because she was a girl. One year she went to camp and received the award for being at the nurse’s station the longest because she had to infuse. In a place where she was finally supposed to fit in, she felt embarrassed and thought they were making fun of her.
Destiny always felt like she fit in more with the guys regarding her disorder. One summer at camp, she was placed with the boys where she learned to infuse. She earned the Golden Syringe that summer and was the first girl to learn to infuse at that camp. This experience gave her optimism for girls in the hemophilia community that proper diagnosis and treatment is finally being recognized. “It’s best for me when you can own your disorder. You have to embrace what you have. I’m excited that girls will have more of a family, more people to lean on.”
In embracing her disorder, Destiny has also accepted the sacrifice that comes along with it. In high school she participated in dance team, cheerleading, cross country, and basketball. She started getting pains in her ankles, which would not subside even with medication. “I just had to push through it, push through the pain.” Her hematologist told her that she needed to take care of her ankles or face fusions and braces, so she gave up basketball and eventually cross country. This was an easy decision for Destiny, as it enabled her to pursue her dream. “It depends what your priorities are. I was willing to give up sports to model, to wear heels.”
Determined to overcome the limitations associated with a bleeding disorder and fear of missing out, Destiny is living her dream of modeling. “For a long time my biggest fear was that I really was what these kids were saying. I was always going to be this outsider. It was always my fear that I wouldn’t be able to achieve what I wanted to. That I always be looked down on as this victim. I was able to decide that I wasn’t going to let that happen.”
There are still challenges, but nothing her perseverance cannot overcome. Once she went for a casting call and was a top pick. After the interview round, they gave her a pair of shorts to put on and she describes her legs as being “a mess.” She went into the bathroom and called her mom, seeking advice as to whether to leave or just go out and face rejection. She chose to go out, only to get rejected as the judges noticed the bruises on her legs. She was devastated, but says, “Modeling is very hard. You have to be mentally strong. People will say things. I know things are going to be said and I can’t change. It’s better to try than to not.”
Destiny’s experiences with bullying have long-lasting impacts that have helped to shape the person she is today. Celine says that her daughter has developed a great ability to empathize with people because of how she was mistreated. Destiny agrees. “Kids that were bullied, they make something out of themselves because they have to mentally push themselves harder and strive harder. On Facebook, I see all these kids that were bullied like I was and they have huge jobs; they’re doing great. It gives me empathy for kids who are going through that. You don’t realize what they’re going through because you can’t see it.”
Her final message of hope to anyone struggling is, “Keep fighting. Keep pushing through. Don’t let anyone define you. Don’t let your disorder define you. Things do get better.”