My life with Turner’s Syndrome (aka: the frustrations of a short person)
Being different can make you feel isolated
Life among the 2000
You have probably heard someone described as being “one in a million.” It generally means that they are unique in one way or another. Well, I may not be quite “one in a million” but I can safely say I am at least one in two-thousand. That is because I am one of about 70,000 women and girls in the United States born with Turner’s Syndrome (TS).
TS is a rare genetic disorder
A brief explanation of Turner's Syndrome
I won’t bore you with a long scientific explanation of TS which you can find elsewhere. The Cliff’s Notes version is that it is a chromosomal abnormality affecting only females. Girls with TS normally present with a range of physical symptoms including heart and kidney abnormalities, infertility related to ovarian failure, webbed neck and certain learning and social challenges to name just a few. One of the more obvious physical symptoms is short stature (I am 4’5” on a good day). This is certainly not the most serious of physical symptoms but it does present a certain set of challenges and frustrations that I would like to share here. My hope is that it will help you understand what it is like to be so obviously different from everyone else.
No reminders needed
First, I am perfectly aware that I do not look like everyone else. I assure you that my short stature did not happen overnight. I was in fact born this way. What may surprise you is that I don’t always think of myself as being short. Most of the time, I am just going about my life. I worry and deal with the same things you deal with: work, bills, family issues, etc. I don’t really need you to remind of the fact that I am different, no matter how well-intentioned. Just treat me with same courtesy as anyone else.
Trying to look age appropriate
The "cute" factor
Please do not comment about how "cute" it is that I may have to shop the children's section for certain items. There is nothing cute about being 46 years old and trying to find a pair of shoes that do not have bows, glitter, or cartoon characters. People frequently try to offer helpful suggestions. Believe me, at my age, I have tried just about everything.
There is a time and place for questions
An object of curiosity
Having an obvious physical difference of some sort does not mean I am unaffected by rude comments or that I should have to explain myself to strangers. I can deal with the child that remarks “Look, she’s short.” I understand that I confuse children. They can’t quite work out if I am an adult or a child. They also have not completely grasped the concept that their voices carry and I can actually hear their remarks. Adults are a different story. Most adults would not dream of asking a complete stranger a personal question yet will feel free to ask me anything and everything. I have had a stranger sit himself down at my table in a restaurant and ask me if I was a “midget” (his word). I understand you are curious; however, there is a time, place, and manner in which to ask.
I don't need your permission
Please do not feel that you have to give me permission to be short. I can’t count the number of times someone has asked me about my height, I’ve indulged their curiosity, and they respond with “That’s ok…” or “Don’t feel bad….”, and they proceed to tell me about someone else they know who is short. First, I am glad they are ok with my stature because I sure as heck can’t change it. Second, there isn’t something inherently bad about short stature that I should feel bad about any more than I should feel bad about having green eyes. Finally, I really don’t care if someone’s mother, grandmother, aunt, or next door neighbor is/was short. I am cognizant of the fact that there are other short people on this earth.
Challenges of daily tasks
I do the same things you do. Certain things just may be more difficult and I may have to do them differently. I would love to be able to go to the grocery store and not have to ask someone to get something off a higher shelf. I have even avoided going to certain restaurants because I knew I couldn’t reach their coke dispenser or that they only had high bar tables which are very awkward for me to navigate. I am used to the fact that I normally only have access to half the salad bar. In most cases, I can’t reach or even see what is in the containers in the middle. Most of the time I just deal with it because I don’t want to ask someone to fix my salad for me.
I am an adult
Just because I have the height of a child does not mean I have the intellect of a child. Certain learning challenges are common with TS. This is usually seen in areas like math and spatial reasoning. I freely admit math is not my forte. I can handle typical math you encounter on a day to day basis; however, I will be completely lost if you give me some type of equation with all kinds of letters and symbols. I do not find this has hampered me. In my 46 years, I have managed to earn a BA, MBA, JD, and a Practical Nursing certificate so I think I am at least of average intelligence.
The social issue
Please do not push if I respectfully decline an invitation to certain social situations or activities. It is probably because I do not feel comfortable in that situation for one reason or another. I don’t know if my feeling uncomfortable in social situations (especially large groups) has to do with the TS or the fact that I am kind of an old soul. I simply find a quiet evening at home watching Masterpiece on PBS with a cat in my lap much more enjoyable that going to a crowded restaurant for happy hour with a group of coworkers. Not only would I feel like I had very little in common with the coworkers other than work, I would probably be forced to sit at a high table with high bar stools. That is not a big deal for someone of average height but not comfortable at 4’5”.
Finally, love those in your life who may be dealing with their own differences. Chances are they find plenty to beat themselves up about every time they look in the mirror. They don’t need someone else to do it for them.
© 2015 Vicki Holder