By Guest Blogger Caitlin L. Gong
It is estimated that 10 percent of people in the U.S. have a medical condition that could be considered an “invisible disability.” These disabilities may range from sleep issues to problems as serious as diabetes and lupus. I am one of those 10 percent. I have struggled with invisible disabilities since the day I was born, and while some have improved with age, others will require much more time to improve.
I was born with a neuromuscular condition that doctors didn’t really have a name for at the time, as well as hypotonia, which results in poor muscle tone, poor muscle coordination, slow reaction time and learning difficulties. I went through years of physical and occupational therapy, as well as adaptive physical education classes from elementary to high school. During this long period of time, I also battled insomnia that was bad I couldn’t stay asleep or even fall asleep in the first place.
Many of my classmates had no idea I had disabilities, since I had been in mainstream classes since the second grade. It wasn’t something I really talked about with them either. I always had trouble making friends, because I didn’t know what to talk about – and perhaps, because of my disabilities, I was more socially awkward than others. I never really had a best friend growing up and remember always feeling like I had missed out on a class in school on making friends. I didn’t know why everyone else seemed to have such an easy time. I tried hard to fit in and listened to some of the same music that my classmates did and was even in Girl Scouts with several of my classmates for five years until the troop disbanded.
Things finally began to improve for me socially in my later years of high school when I hung out with a few girls in my grade, but those friendships didn’t last long after high school was over. I didn’t have much luck socially in my first two years of college either, because I think by then, I was so desperate to have friends that I would become attached to people who took advantage of me and didn’t treat me the way I deserved to be treated.
What has helped me through the years has been the support of my parents, particularly my mom. My mom has been there for me during years of doctor appointments. She was around whenever I needed to talk and she worked at home, so she could be there for me and my siblings. We have always had a very close relationship, and she has done lots of research through the years to see what could be done to help me with my disabilities.
One of the things she learned about was a condition called NLD. NLD, or nonverbal learning disability, is a learning disability which affects people’s abilities to interpret the facial expressions of others and can result in difficulties with visual and spatial cues. Those with NLD may have some social difficulties as a result of the condition. They also often have significant differences between their verbal IQ and performance IQ scores. She thought it seemed to describe me perfectly, and I was diagnosed with NLD after a neuropsychological evaluation which showed that my verbal IQ was significantly higher than my performance IQ. After being diagnosed with NLD, I have been able to find websites devoted to NLD and Facebook discussion groups where I can talk to people who may be facing the same problems that I have.
After my evaluation with the neuropsychologist, I began going to cognitive therapy for a few months to improve my visual coordination skills, scanning abilities and social skills. During this period of time, I also was seeing a psychologist because of my low self-esteem. My psychologist put me on hold in April 2010, because he thought I was doing better. I didn’t start seeing him again until last February, because I’d been having suicidal thoughts and was going through a period of depression.
Things have actually improved in some respects for me since last February when I began seeing both a psychiatrist and a psychologist, as well as a new primary care physician. My psychiatrist diagnosed me with depression and an anxiety disorder and put me on an antidepressant and another medication to help me deal with my anxiety. One of the medications has actually allowed me to sleep through the night most of the time, which has helped me mentally and physically. My doctor had me go through several blood tests after my disabilities were described to him and one showed that I had hypoglycemia, while another gave me a name for my physical disability. I have a rare condition called partial trisomy 16, which results in poor muscle coordination and can result in learning disabilities. As a result of this diagnosis, I am now on a special diet with less carbohydrates and sugar and more protein.
I’m still very much a work in progress, but I’ve improved somewhat socially because my mom has helped me with my social interactions, and I’ve interacted with different people throughout my four years of working at Kohl’s on the sales floor. I even have coworkers I talk to regularly and have become friends with them online as well. I am working on finding more social groups and have met some interesting people through Special Olympics who I think I can maybe become friends with over time. I have been working on my everyday life skills like ironing and cooking, and with time I hope to become more independent and be able to fully take care of myself.
Caitlin Gong is 22 years old and has a nonverbal learning disability and partial trisomy 16. Caitlin works for the Turner Syndrome Foundation as a program assistant where she assists with correspondence, updates website content, creates Excel mailing lists and helps with various other projects. She also enjoys reading and reviewing books, listening to music and writing.