Being a teenager is an awkward experience in itself. As you transition from childhood to adulthood, you’re suddenly forced to make major life decisions. For a disabled teenager, the transition can be even harder. Add the uncertainty of not being diagnosed and it’s a recipe for disaster — which was exactly the recipe I got.
If you looked at me as a teenager, particularly during my freshman year in high school, I would not have stood out from my peers. If you looked closer at my dominant right hand, though, there was a significant problem: the bones jutted out and my hand was tiny and frail compared to those around me. People rarely noticed, but that didn’t stop me from noticing it daily. I knew it was different when I played volleyball in gym class and my hand would turn red and swell in seconds; I knew it was different when my tennis racquet would go flying in the air when hit by a tennis ball as I didn’t have the ability to grab the racket tightly; I knew it was different when writing in class made tears well up in my eyes.
I didn’t know what was wrong with me, though. Not only did my hand hurt and look off, but as my freshman year progressed, I started to have more trouble in new ways. Suddenly, I found myself unable to tolerate the cold as my hand would turn purple, and when I would hold a pencil to write I felt excruciating pain. I pushed through freshman and sophomore year before desperately seeking answers in my junior year of high school.
My first doctor’s appointment was in a nearby “good” hospital. It had taken three months to get the appointment, and it had gotten canceled once. After a quick consult, the doctor — who was Chief of Surgery and claimed to be the best in the area — shrugged it off and said there was nothing wrong. Disheartened, I turned toward New York City. In New York, I was given more hope that there was a problem, but was told the doctor could not treat me because he wasn’t sure what that problem was; instead, he pointed me toward Philadelphia, where I had my worst experience. My doctor was condescending and discredited my pain as he didn’t understand the source of it. Immediately, I disliked him, but he was deemed to be the best for my future. After sending me for testing, he told me to come back in six months. I exclaimed my disbelief and he said maybe he would have an answer for me in three months, but there wasn’t much hope. This was two days before I started my senior year.
Frustrated, I began to do my own research in hopes of finding answers. Not knowing the source of the problem, it was difficult to determine a specialist. I finally stumbled on Johns Hopkins Hospital in October. There were multiple doctors under the hand division for orthopaedics, but only one who took my insurance. I was fortunate to get an appointment, but not until December. At this point, I limited writing in school and was constantly icing my hand. Students gave me odd looks and didn’t understand. Teachers didn’t understand either and asked why I was in so much pain, which is what I wanted to know, too.
December rolled around and I found myself on a long drive to Baltimore. I was the most nervous for this appointment and sat shaking my leg in the waiting room. I remember the second my doctor walked through the door and smiled so genuinely. Without looking at my charts, he asked me to share my story. I went through the difficulties, I showed him the lack of motion, and I pointed out the pain. He evaluated my X-rays and MRIs before his face lit up — something I was not used to seeing from doctors.
“You have Poland Syndrome,” he said, his eyes piercing into mine. “You do not have APB muscles to make your thumb opposable.”
That moment, my life changed. I finally had a diagnosis and could define my problem. I knew it was not just in my head, but a problem within my body. I felt a rush of pride for being so consistent and not taking the other doctors’ opinions.
“But you have a tumor resting on your nerves, which is causing your pain,” he went on.
How did the other doctors ignore the signs? He gently pressed on the source of my pain before he took my other hand and let me trace the lump. He turned towards the MRI and pointed out the mass on the screen. Instantly, I knew I had found my doctor.
It has been over a year since my diagnosis, but I still have problems with my hand. I had surgery January 2015 to remove the tumor resting on my nerves. I had a second surgery that April to reconstruct my hand, which consisted of a tendon transfer and a deepening of the web space between my thumb and index finger.
I am in college now, and I am still in recovery. My hand will never be normal, but it can improve. The hardest transition for me is that my disability falls under the invisible spectrum. No one notices and I am still unsure how to tell others. The majority of my new friends do not know, but they notice some difference. They laugh at my attempts to cut meat in the dining hall, they laugh at how I can’t scoop ice cream and ask my RA to assist me, and they laugh at my problems without knowing the deeper meaning. I accept this reaction and have started to open myself up to discuss it. Many sit in silence, unsure how to digest the information.
But one day, I hope to be confident to tell my story to anyone who happens to notice the fading scars on my hand.
8 Comments
Hi, I’m Asia and I have CP. My hands look perfectly fine, but because of my paralysis my fine motor skills are delayed. This became a problem in high school, because I write very slowly and get easily tired. Though, unlike you, I had a diagnosis, it got awkward with my classmates as well and for the longest time I hesitated to talk about my disability, even in college.
I think it was really great that you decided to share your story and I wish all the best
I totally get your confusion over your condition and your frustration with your doctors. I had a problem with the muscles in my right arm, ‘causing me pain and stiffness for months, and my doctor said he had no clue and showed no interest in finding out. Months later, when the muscles had gotten so tense my knuckles were red and I couldn’t close my hand enough to hold a toothbrush, he tapped my wrist and said, “See? There’s nothing wrong with you.” I wanted to punch him, but I knew it would hurt me more than him. I think he either thought I was after painkillers or just one real dumb ass. Probably both.
In the end, I asked him for a referral to physical therapy, and there they knew exactly what was going on, and why, and how to fix it. Took a year, but I’m back to health now.
So yeah, to find you went through the same thing, but much worse, with that same kind of all-knowing condescension from those you’re depending on, makes me angry you had to face that, and glad that you’re focused on becoming a health advocate.
Also, about friends laughing? Glad you’re getting to where you’re cluing them in, even if it makes them feel sheepish. It’s sure to be a great lesson to them not to mock others who’ve been through a great deal just to get to a point they take for granted.
P.S. Saw this today and thought you’d appreciate her story.
http://www.cnn.com/2016/06/22/health/turning-points-kellie-lim/
I can totally relate 🙂
My disability is invisible and it took me years to actually get a diagnosis. Even then, it still took years to get more specific with my diagnosis. College was really tough since I couldn’t do what others can but had such a hard time explaining why. Sending hugs!
Just wanted to add that I also have a mostly invisible condition of my heart. For 40 years I heard “You’re being a wimp,” “Work harder.” “It’s all in your head.” “You just have anxiety and stress.” Even after I had an EKG and proof of my condition, my doctor told me it was no big deal, lots of people have my condition with no problems and my symptoms were not related. He was so condescending at that point I’d had enough. I went to a new doctor who immediately ran tests and discovered that my symptoms were because of my heart condition and I was one of the people who this condition actually affected in a big and negative way. I guess my point it is I can sympathize with you and your experience, I’m very glad you found answers and the right treatment, and we all need to be our own advocates. We could have just let educated and experienced doctors tell us there was nothing wrong with us and suffered the rest of our lives, but we didn’t. We have to advocate our own health! Oh, and on a side note, I’m fairly certain that a number of the (male) doctors that disregarded my concerns over all those years did so because I am female. Our pain, our concerns are often swept aside as coming from a hysterical or over emotional woman. It was the female doctors who took me seriously and tried to help.
Hi, my name Jasmine and I can relate to your situation being a teenager and going through a rough time. As a teenager it becomes tough to transition into adulthood. I’m always being questioned about my weight. When people meet me the first thing they say is “Do you eat” or “Do your parents feed you”? I’m tall, skinny, and I have long legs so people assume because I’m small I don’t eat. I’ve always been thin, even as a child. People are constantly uncomfortable in their own bodies and the threat of others makes it hard to feel fully confident. As a future educator I believe that self determination, hard work, and having a positive attitude are the keys to managing bullying or even a learning disability.
Hi, I know what you are saying. I have poland syndrome I’m 53 now and I can see as I get older that it gets harder for me to do things. It was hard when I was younger I was always wondering if people are noticing. I wear bigger shirts to hide my chest cause I didnt want people to see any difference. It took from the time I was born until I was 18 years old for me to find a doctor to help me and then they didn’t know what it was. I’ve had 2 surgeries on my chest since then. I just had 1 last year. I hope the best for you and don’t let people bother you about any of it. Thanks for sharing sometimes people feel alone when they think they are the only one that has something like this.
I can relate to it , the moment I found out that it’s a real problem with a real name, I felt I can be relieved from my doubts and worries. I can’t wear T shirts or slim fit shirts , so baggy shirts are the only attire that I flaunt . But still , I am happy with my body !!