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.
Caitlin, a great story and I applaud your determination and the grace you have in telling it. I also have an invisible disability. I have extreme anxiety with panic attacks. I am also a recovering drug addict and alcoholic and I yesterday celebrated 11 years clean and sober. May 1st 2002 was the last time I used any mood altering substances. To go to a family function for me is painful and any social interaction is something I have so much trouble with. I just want to stay home all the time and that is very lonely.
This all came to light when I tried to give up drinking because that was the only way I could function. After that I was put on Klonopin and Xanax, and that was not good because I took too many and coming off those was the worse experience I have ever had. But still, I went through that withdrawal 3x because I just could not do anything without some help. So I decided in 2002 that I just have to stay clean and it has been life altering for me. Good and very difficult, but I am not giving up. I wish you all the best and know you are so in tune with your situation that you will soar to new heights. God bless you and thanks.
Kevin M.
I contribute to a website for faith-based families who have loved ones with hidden disabilities. Check us out at http://www.chosenfamilies.org.
Thank you for all of the great comments on my story! I’m glad it was inspiring for all of you to read. It is certainly difficult when people think you’re fully capable but you have difficulties that people don’t easily notice.
I’m not sure how I ended up here, I was searching for something that really had nothing to do with this forum. I could not believe that you mentioned “invisible disability”. It was a “Hey, that’s exactly it” moment for me. MY problems were all in my head. I am very lucky it wasn’t something that physically affected my body. I have no idea when things started, and I didn’t even think I had a problem. There were soooo many times I would wake up in the morning, and call work to say I was sick. I would get those lovely migraines that would start in my left eye, things got a little weird, and then the “lightning bolts” there’s a term for that – I think it’s called something like an aura. It was so predictable, slowly moving from my left eye to my right eye. When it got done doing it’s thing, I was honestly scared…not for myself, but at that point, I was useless as a human being, and just crawled up in a ball.
That haunted me for several years in my 30′s, and of course even though I pat myself on the back for what I felt was going above and beyond my formal duties, I silently would listen to the fact that I was kind of undependable…which from management’s side I understood. I was deemed unreliable, but yet I was the first one that my manager went to when there was a “fire” that needed to be put out immediately. (I was working for Gateway computers at the time. I was a tech guy).
Anyway, the migraines would only hit me damn near right before I had to leave home, and I could time the whole routine from start to being wiped out. I would always go to my doctor (MD) just to make sure I had a note saying I needed the day off. That was a waste of time, but I digress.
Finally after talking to a relatively close friend, it was suggested maybe I might want to go to a “shrink ward” at a nearby hospital. The weird thing was that I thought that was a good idea. I made an appointment, and stepped into a whole other world. There were many doors to pass through, and each one was locked behind me as I entered. I actually felt relief, and was quite honestly hoping I would become a patient. Bottom line, after several hours of being “interegated” by at least 3 doctors, and me crying the whole time, they let me go, and I was actually disappointed they didn’t keep me there. I still laugh to this day how I wanted some help, and was told I was okay.
So let me end this long boring story, it took another 2 years before I decided I wanted to see a “shrink”. I was actually happy to hear after a couple of sessions that I had some kind of bad depression, and was slightly bipolar, and something else I can’t think of right now. I’m being medicated with a few things that not bragging, would put “normal” people into a coma. I still get myself into trouble on occasion when I might say something to another person that makes me look like a jerk, but I constantly talk to myself (silently) so things don’t get out of control. Bottom line, I have an “invisible disability.”
Side note: THANK YOU SO MUCH FOR USING THOSE TWO WORDS. It gets sooo hard for me. I don’t whine, using the disability as an excuse, because my outer shell doesn’t give away my problems. I just am looked at as pain in the butt (not on a daily basis). I’m not embarrassed now that I have come to actually understand what is wrong with me, and every day, I have to quietly tell my brain to behave. It would be sooo much easier if I just said “Hey, I have this and that issues with my brain.” I NEVER say out loud, “I can’t help myself, I have this and that thing to deal with.” Anyway, I’m just rambling on, and to repeat myself, I am soooo happy to hear “invisible disability”. This will definitely be branded into my mind, and hopefully help me to keep a smile on my face to others, and really mean it.
Thanks Caitlin! We have different issues, but those two words make us equals.
Thank you, Caitlin, for your inspiring story. I have had problems since I was a child and kept many of them hidden. I excelled academically, but I have always had social anxiety disorder and missed as much school as I could get away with. I never felt right in my own body, in my own skin. I was ill quite often, lathargic, fatigued, stomach pain constantly. My whole life has been pain, with only moments in all that time, of happiness. When a person is in pain physically, constantly, it leads to depression. Since Doctors could find nothing wrong with me physically even though I had symptoms, I was diagnosed clinically depressed when I was 26 years old. I am now approaching 60 and wish this life of mine would finally cease to be. My husband of 35 years has left me and remarried because he could no longer “put up with me” his words.
May God bless you in your efforts to live a complete and whole life.
The beginning of your story is very similar to mine. I’m still in high school, but have always had trouble socially and high anxiety. People had no idea for the longest time these things were happening to me due to my lack in faith in my self as a person. Meaning I told no one, acted like I was perfect. I have recently been diagnosed with non verbal learning disorder. I hope with the proper treatment will improve for my life. Hearing your story inspires me and gives me hope thank you. Sorry if this is badly written still rather emotional at the moment.
Thank you for sharing your story, Caitlin. I was finally diagnosed with Fibromyalgia in 2001. The mere fact that we don’t look a certain way – “you don’t look sick” – is often what we hear a lot. Our spouses, children, doctors, family and friends cannot understand what it takes each and every day just to do normal things. However, our moving on and dealing with what you can do (our new normal), is a victory for each of us with “invisible diseases/conditions.” My hope is since we have paved the way for others, it won’t be so difficult for them to get what works best for them. Warm regards, Deeba
Caitlin,
Thank you for sharing about your life. All I can say is my higher power, J.C., mirrors your words of encouragement about having as you mention, an “Invisible disability.” I do not know what else to share.
Dear William,
You’re not at cause. Neglect from being dependent upon others made you a people pleaser, always giving to others due to feeling something was wrong with you!