How Does Being A Minority Within the Rare Disease Community Affect My Mental Health?

Lynn Julia

by Lynn Julian

When I was asked to write this Guest Blog, for Minority Mental Health Awareness Month, I thought  of all the different types of minorities that I am. The definition of minority is “a number that is less than half the whole number.” Yet, the term typically refers to any group that is “subjected to oppression and discrimination by those in more powerful social positions.” With this in mind, I‘ll review how every type of minority I am affects my mental health. I was raised a poor, non-white, female, who became a bisexual, rock musician with many rare diseases and conditions. Did the former influence the latter?

  I was born female, and women are 51% of the US. Yet, I’ve always felt like a minority. My grandfather took my brother on adventures, while I stayed  home with my grandmother… Simply because I was a girl. My grandfather loved me, but was raised to believe that girls should stay home… With the other women. The message my mental health received: you are not equal to your brother, and therefore not afforded the same privileges as him. As a teen, my brother got a “long leash,” and lots of freedom, but I had to be home by dark. This was justified as being for my safety, but the message felt the same: girls are not equal to boys. Every time I was given less privileges, I felt forced to accept this. I was born into a culture that supports and encourages boys to explore their world to become strong, confident men. On the contrary, girls are taught to fear their world, leading to insecurity and lower self-esteem… to the point where women feel oppressed. Studies show that girls’ self-esteem continues to decline from grade school to high school to college, whereas boys’  self-esteem increases. I am no exception. No matter how many albums I released then, book chapters I publish now, or acknowledgements I receive… I never feel good enough. This is not rational, as feelings are not facts. I‘m a highly accomplished woman, creating change in the world. But, that little girl still feels like she has something to prove… to herself, and everyone else. Would I be more confident, satisfied and happy if I were born male?

Lynn Julia as a child

I knew I was poor, from a young age, even though  my parents never used that word. I knew my poverty made me a minority, at the private Catholic school I received financial aid to attend, by how wealthy classmates treated me… like I wasn’t one of them. They‘d flaunt accessories we couldn’t afford, and make fun of my hand-me-down clothes. In Second Grade, the teacher hosted a kite contest. It had to be homemade, and it had to fly. What my dad lacked, in zeros in his bank account, he made up for in his endless variety of skills. We created a kite out of a trash bag, two sticks, his tie for a tail and my decorations… And, it ended up being the only kite that could fly! Yet, the contest winner was, a chubby cheeked, blonde girl, from a wealthy family, who flew a store-bought kite. Why? Because my classmates voted for her… Even though she broke the rules. I wonder where these children learned to vote for people who cheated? (And if any of them are successful politicians today?) I felt resentful and cheated by this wealthy family, my classmates, and my teacher… who was supposed to help us learn right from wrong. Would I be less angry, and depressed, if I were born wealthy?

Lynn Julia as a senior in high school

I rarely mention my “visible minority,” my race, simply because I am not often seen as African-American, or Latina, which, culturally, are considered the chosen minorities in the US. I was raised Italian, but I am 20% North African, according to my DNA from the “all of us“ research program. I’ve always felt like a minority, by the way I’ve been treated, since I was a child. When I moved to a new state, where no one looked like me, THEY definitely considered me a minority too. Strangers’ children called me, the N-word, and threw rocks at me. Yes, I literally got stoned… Not the good kind either! A nun, at a church function, told my mother how much she looked like her father-in-law… which clearly made no sense. When mother corrected her, she replied, “Well, all you dark people look alike.” Again, the message was clear: you don’t look like us. We were included in   various social circles, but repeatedly reminded of our differences. These reminders continued to chip away at my fragile, teenage self-esteem. Would I feel more like I “belonged,” and was entitled to be there, if I were born white?

I decided to study music in college, having no idea that I was setting myself up, yet again, to be yet another type of minority: a female musician. I study jazz, as a vocal major, and was disappointed to discover how little I was allowed to participate in the program as such. All the other instrumentalists were in two and three ensembles each. The vocalists were only allowed to be in one: the vocal ensemble. I fought for inclusion, and won the right to join an instrumental ensemble. But, as what still seems like a punishment, I was only allowed to sing horn parts. It felt like a hollow victory, at best, and it cost me the favor of many of my teachers, who did not try to hide their annoyance. When my parents came to see me perform, my mother said, “What happened… I thought you were going to sing?” I fought to find my voice… but, did I? The lesson I learned was that women cannot undermine men’s authority without consequences. Would I have received a better education, made more connections, and gotten better jobs, if I were born male?

As an adult, I live with “invisible disability,” meaning you can’t tell I’m disabled by looking. I’m grateful for the privacy this affords me. But, appearing able-bodied subjects me to an endless string of negative judgments by healthy people, who assume I should be able to do “more.” Our culture values  productivity over self-care. In an effort to keep up, and please people, I repeatedly push myself too far, my body “crashes,” and my chronic conditions flare up. My disabilities do not make me a minority, but my many rare diseases and conditions do: hEDS; Mast Cell Disease; SUNCT Headaches; craniocervical instability; Occult Tethered Cord; Burning Mouth Syndrome; etc.. As a rare disease patient, I’m aware I’m a minority by the way doctors treat me… Like my medical conditions frustrate them. The zebra is the mascot for rare diseases. Medical students are taught, “when you hear hoofbeats, think horses, not zebras.” Zebras are diseases they cannot treat, let alone cure, which aggravates them, and reminds them of their own limitations. Would I receive better healthcare, if I did not have rare diseases?

Thankfully, all my life experiences, as a minority, have strengthened me to become the accomplished, resilient woman I am today. I’m a Featured Speaker, on “The Secret To Resilience,” a published author, an award winning musician and an Ambassador for the American Migraine Foundation, The US Pain Foundation, the Rare Disease Legislative Advocates, Strength To Strength and more. This zebra learned to “dazzle.” (That’s the name for a herd of zebras.) I‘ll never prove whether my chronic conditions resulted from the chronic stress of life as a minority. But, I DO know that my mental health continues to suffer from it. For now, I‘m a woman living in a world that prioritizes men, a poor person living in a culture that values wealth, neither black nor white, a zebra living in a horse’s world.