My Onion Journey
A young white man is standing with his arm around Megan’s shoulder, a young white female. They both smile at the camera and wear the same black shirt with a colorful graphic of “Woodstock.” The woman has brown shoulder-length hair and squints through dark-rimed glasses. The man has short brown hair and wears a light pair of glasses. They are outside on a deck with trees in the background.
“What appears to be a person is not how they are on the inside.”
It started when I was just sixteen. I was not developing like the other teens. I remembered thinking, “what’s wrong with me?” I was experiencing delayed puberty. I got tested for a learning disability multiple times. After the neurological tests, I found out I have a developmental delay. My pediatrician suggested I see a geneticist, so I did. Driving 40 minutes away from where I live, I met with a friendly geneticist. I was terrified. I didn’t know what to expect, but I did the genetic tests recommended because I knew it was what I had to do. A few days later, I got the test results.
My parents sat me down on the living room couch, and I heard the words: “benign tumor.” Of course, with the mention of “tumor,” I immediately thought the worst and started to cry. I asked, “does this mean I have cancer? Does this mean I will die?” Thankfully, it was not cancer, and I was not dying. My parents told me with my condition, luckily, it’s a benign tumor and not hazardous. I felt mixtures of both happy and sad, bittersweet feelings. I felt down about having to go through the process of getting diagnosed with a rare disease, but at the same time, I felt relieved we knew why I had not experienced puberty until later on. Now, I finally understood what was “wrong” with me.
A young white man is sitting with his arm around Megan’s shoulder, a young white female. Megan has short brown hair and dark-rimed glasses and is wearing a black shirt with a multicolored “Woodstock” graphic. She has a blue picnic blanket on her lap. The man has short brown hair and light glasses and is wearing a dark blue shirt with green and red accents and light-colored shorts. They are outside, sitting on a porch swing with a few sparse trees in the background.
While crying and wishing I was something different, my mom told me, “God made you the way that you are.” That gave me a sense of peace. However, I still felt I needed time to process my new diagnosis and take time for myself. It weighed on me. I recall seeing the pictures and descriptions of people with my rare disease in the “UNIQUE” catalogue, seeing images displayed of people who had severe deformities. It was a lot to process. All I wanted was to live to find a husband and get married.
After the diagnosis, I had to take a few medications for the benign tumor. Every six months, I had to go to my local hospital and then have a follow-up appointment with my endocrinologist. Luckily during the next few years, my prolactin levels were normal. Therefore, I got reduced to only one medication, and instead of seeing my endocrinologist twice per year, I saw her only once a year. All felt well.
Yet, while I was in college, I felt a whole new level of emotions. When I was a junior, I felt a mixture of sadness, then anger, and then resentment. I was worried about my next step in life. I was afraid to ask my mom to discuss my family planning future with my geneticist or endocrinologist. “What if I can’t have kids?” I’d often wonder.
A young white man is standing with his arm around Megan’s shoulder, a young white female. They both smile at the camera and wear the same green shirt with “#belovedlovers” in white. They both have short brown hair, and the man is wearing dark sunglasses, and the woman is wearing dark-rimed glasses. The man is wearing dark jeans and brown boots. The woman is wearing a red jacket and black pants with brown boots. They are outside on a sidewalk in front of a train station, with a sign saying, “Croton Falls” in the background.
Then, I happened to have classes with Ben, someone I had known since freshman year. We got close over the next year and realized we liked each other. After graduation, we decided to date. Ben had been vocal about having a rare disease, so I told him about mine a month after dating. I finally felt like I was no longer alone with this rare disease.
I remember being at Ben’s vacation house, talking to his mom on the first date, and she asked me to tell her a little more about living with my rare disease. At this time, I felt a desire to be a rare disease advocate for others in similar situations. I want to help those like me who think they don’t have a voice or need support.
Ben has helped me accept my rare disease by being with him without even knowing it. He just gets what it’s like to have a rare disease. I finally feel like my layers are getting peeled back more and more, similar to an onion. I guess you could say it is “My Onion Journey.”
Megan Freeman is a 26-year-old living with 2q37 Chromosome Deletion Syndrome. She is connected with the organizations C.H.I. (Congenital Hyperinsulinism International) and NORD. She is a member of Our Odyssey, YARR (Young Adult Representatives of RDLA) and Everylife Foundation. She advocates with organizations like Rare Across America, Rare Disease Week on Capitol Hill, and Rare Artists. Mental health is important to Megan, and she is an influential advocate, spreading awareness about the mental health aspects of living with a rare disease. During her spare time, Megan makes and sells beautiful greeting cards to raise awareness for rare diseases. She has the personal goal to cook every cuisine of the world as she loves to cook. Megan is an all-around creative person and loves a good Yankees game. She recorded a podcast with The Rare Disorder Podcast. Find her on Instagram @cardc.urator and Facebook @Megan Freeman.