invisible disability – Life with Charli

100 posts! Let’s Celebrate!

I just received a notification from WordPress that said I’ve published over 100 posts on the platform! Yay me! But seriously, this is wonderful. One of my fears when I started blogging was that I would run of ideas to write. Here I am nearly six years and 100 posts later, and I’m still going. I started this blog because I believe everyone has an interesting and important story to tell, and I wanted to share mine.

Sharing my story and experiences has been a wonderful journey so far. I’ve talked a lot about my experience with a genetic disorder called Turner syndrome on my blog. For years after I was diagnosed as a teenager, I kept my condition to myself, only sharing it with a very select few people. As I grew older, I started advocating for myself, and I needed people to understand what my day to day life is like as a woman with Turner syndrome. This inspired me to share my story. One of my first blog posts was “Imperfectly Perfect: Life with Turner Syndrome”. The truth is, I actually wrote this blog post for a major magazine. I submitted it, but never heard back from any representative from the magazine company. That’s when I decided to create my own platform. That’s how Life with Charli came about! I was nervous about starting a blog, but I realized that if I wanted more awareness on Turner syndrome, I needed to be comfortable with sharing my story.

I have also talked a lot about dealing with mental illness on my blog. I have mentioned many times on my blog that was hesitant to start therapy and medication for my mental illness. To be honest, even up to the time I started my blog, I was still hesitant. However, I noticed a lot of other bloggers boldly talking about mental illness with no shame. Then, one day, I asked on one of X, then Twitter, if anyone would like to share their story on my blog.

I was so happy when I got a response from a fellow writer Lesley Skinner. When Lesley told me that she wanted to write about mental illness, I gladly collaborated with her and published “Christianity and Mental Health”. Around that time, a fellow blogger, Nadine, shouted me out as a fellow mental health advocate.

I was shocked, because I didn’t see myself as one. However, I happily accepted the praise. It wasn’t really my intention to focus on mental health, but looking back, that was a topic I have been talking about from my very first post “This is Life: Your Purpose, Your gift”, which focused on self love. Other early posts that followed also focused on mental health, like “Judgements and Assumptions”, which focused on social anxiety. I just did not realize how connected to mental health those posts were. I was just writing my experience. Amazingly, people were listening responding so positively to what I had to say. Little did my fellow bloggers know, though, that I was listening to them too. I decided to reach out for help with my mental illness like so many of my fellow bloggers, and was officially diagnosed with depression and borderline personality disorder.

It felt so good to finally be getting help. I’m very grateful to the bloggers who have had an influence on my mental health and blogging journey. With the beautiful feedback I have been receiving throughout my time blogging, I know my story has reached others as well. For instance, a beautiful soul took the time to send this email to me:

A very warm thankyou to you my friend, and to all those who have been supporting me through all this time. If you are sharing your story online like me, know that people are watching and listening. You are making an impact on someone’s life. Keep sharing your story.

Thankyou for visiting and helping me celebrate 100 published posts. Here’s to 100 more.

Turner Syndrome and Disability

So I’ve recently been denied a service for people with disabilities. This wouldn’t be the first time, but that doesn’t make this situation any less frustrating. I’ve mentioned on my blog before that I am a person with a disability. The problem is that my disability is very unclear. I have an invisible disability, and often others can’t understand what exactly is wrong with me. My physical and intellectual abilities seem to be very much intact. What could I possibly need with disability services, right? Sometimes I even question whether or not I am a person with a disability myself because of all the doubt around me. However, while people are deciding whether or not I am actually a person with a disability, my struggles are very much real, and I deal with them everyday.

I’ve talked about the condition that I have on my blog many times. I have a genetic disorder called Turner syndrome, and it’s the reason for my struggles. Having Turner syndrome does not automatically make a person disabled, however, it can lead to disability. Tuner syndrome can lead to many complications. One of those complications is learning disability. Unfortunately, this fact is not very well known, because Turner syndrome is not well known. Also, girls with Turner syndrome can lead normal lives with proper treatment. However, every girl with Turner syndrome’s experience is different, and some do struggle more than others.

Another issue is the type of disability that girls with Turner syndrome sometimes have. Turner syndrome can lead to nonverbal learning disability. This means they can have issues with visual-spatial skills. Unfortunately, nonverbal learning disability is still not recognized as an official disorder.

All of these combined issues make it hard for me to get the services I need. People simply don’t understand my struggles, and don’t understand why I need help. What is really needed is more awareness on both Turner syndrome and nonverbal learning disability. What is also very needed is an understanding that every person’s experience is different. Not every person with a disability has a disability that is obvious.

Disability Part 2: Nonverbal Learning Disability

Welcome to my first blog post of the year! The topic of this post is one that has been on my mind for some time. I have shared my experience as a person with a disability on my blog before, but I have had yet to go in to detail about what my disability is. Issues that people with disabilities face is one topic that I am passionate about, and one of the reasons I started this blog. I want to raise awareness on the issues we face. In this post, I want to discuss learning disability, and raise awareness on a little known type learning disability called nonverbal learning disability.

If I were to tell a friend that I caught a cold, they would know exactly what I am going through. Chances are that I am dealing with a cough, a sneeze, and a runny nose. A name and a diagnosis leads to understanding. That type of understanding was what I craved for growing up, and what i’m still looking for in my adulthood years. I came close to that when I was diagnosed with Turner syndrome in my early teen years, and when I was officially diagnosed with learning disability in early adulthood. However, it’s not enough.

In previous posts, I have mentioned that I’ve recognized how different I am from my peers from the time I was a very small child. My Turner syndrome diagnosis answered a lot of questions for me, especially when I started to do a little research on the condition. I found that girls with Turner syndrome often have learning difficulties, and when I was diagnosed with learning disability, I was relieved to finally have a name for what I was experiencing. However, the diagnosis was Learning Disability NOS, NOS meaning not otherwise specified. Learning disability is a catch all term for a group of neurologically-based processing conditions. According to Learning Disabilities Association of America

“These processing problems can interfere with learning basic skills such as reading, writing and/or math. They can also interfere with higher level skills such as organization, time planning, abstract reasoning, long or short term memory and attention. It is important to realize that learning disabilities can affect an individual’s life beyond academics and can impact relationships with family, friends and in the workplace” .

Examples of different types of leaning disabilities are

As already mentioned, learning disability is a general catch all term. “Not Otherwise Specified” is also a general term, and is often used to give a general, nonspecific diagnosis. When someone is given a diagnosis of learning disability NOS, it means the psychologist doing the testing recognizes the patient has learning difficulties, but can not pinpoint what his or her specific learning disability might be. As happy as I was to have a diagnosis, I still wished I could have gotten a diagnosis that was a little more specific and provided more answers. However, I understand why I was given the general diagnosis. Out of all the learning disabilities that I mentioned before, the only one that is not considered an official condition is nonverbal learning disability.

According to the U.S. National Organization for Rare Diseases, girls with Turner syndrome often “have difficulties with directional sense, learning math, nonverbal memory and attention. Affected females may also experience difficulty in certain social situations”. Most of the symptoms mentioned are symptoms that I have, and are also symptoms of people with nonverbal learning disability. Unfortunately, learning disabilities like dyscalculia and nonverbal learning disability do not get as much attention as language based learning disabilities that cause issues with communication, reading, and writing. Moreover, nonverbal learning disability is not included in the Diagnostic and Statistical Manual of Mental Disorders, which is now on it’s fifth edition (DSM-5), therefore psychologists can not use the condition as an official diagnosis. Another issue is that since people with nonverbal learning disability often have issues with nonverbal communication and poor social skills, the condition is often compared to Aspergers Disorder. Nonverbal learning disability is also compared to Autism and ADHD, and children with NLD are often diagnosed with one of those conditions, which some experts believe does an injustice to the patients because they don’t get the help they really need with the wrong diagnosis.

Do I have nonverbal learning disability? Would be I diagnosed with the condition if it was recognized as an official condition? I’m not entirely sure. All I know is that I do have many of the symptoms recognized as symptoms of people with NLD. If It were to be made an official condition, then maybe there would be more answers. More answers means learning more about oneself, and learning how to handle struggles due to disability, and learning how to advocate for yourself, starts there.

Interview with Amanda Gene

Hello everyone! I am so excited to be collaborating with fellow blogger Amanda Gene! Amanda’s blog is a personal blog that covers her life experiences, particularly her experiences as a person with a disability. She also uses her platform to let other people with disabilities share their experiences too! I have mentioned on my blog and social media many times that I am a person with a disability, and Amanda asked me to do an interview for her blog to share my experience! I am so honored! You can click here to read the interview! Amanda’s blog and story is so inspiring, so be sure to checkout Amanda’s other blog posts as well! Thankyou for visiting and supporting my blog! Once again, happy holidays, and I will see you in the next post!

With love,

Charli

Disability: Seeing the Unseen

“We hire Shaun and we give hope to…people with limitations that those limitations are not what they think they are, that they do have a shot!”
Dr. Aaron Glassman The Good Doctor Episode 1 Season 1

I’m a little late to joining the bandwagon as the show is already in its second season, but I started watching a show called The Good Doctor. For those who don’t know, the show is about a man named Shaun Murphy who is a surgeon. He also happens to be a man with autism. I’ve been really enjoying the show so far, and was inspired to tell me story about my own experiences as a person with a disability.

There is one word to covers the two reactions people with disabilities generally receive: doubt. There is either doubt in the person’s capabilities, or there is doubt that the person has a disability at all. In the show The Good Doctor, Shaun Murphy fits into the first category. His memory, visual spatial skills, and analytical skills are far above average. He is an asset to the hospital he is working in. However, many of his coworkers can’t see past his very apparent disability. I, on the other hand, fit into the latter category. My disability is invisible, and I often find myself having to prove that I actually am a person with a disability.

From the time I was a small girl, it was apparent to everyone in my inner circle that I was a little different from my peers. Spend enough time me, and one would definitely be able to see my deficits, but only if that person is paying close attention.

“You don’t seem like a person with a disability to me”, a friend once told me.

Little did she know that it’s that same sentiment that often makes it difficult for me to get the help I need. The specific kind of disability I have is learning disability. There are different kinds of learning disabilities, and most of them are language based. That means people with those types of learning disabilities have trouble with spoken or written communication. The most well known language based learning disability is dyslexia. Communication is not a problem for me though. In fact, I’ve been told that I express myself very well, especially through writing.

For me, the problem lies in processing. Many activities that might take other people minutes to complete can take hours for me, however, this would not be easy to notice through mere minutes of conversation with me.

“I wish I had your brain.”, a classmate from college once told me. She did not understand that it was not a superior intellect that made me successful during my time in college. It was my work ethic and perseverance that made me successful. Like any other person, I work extremely hard for what I want, and in some cases I have to put in even more effort than the average person.

For Shaun Murphy from The Good Doctor, his disability is front and center for those who meet him, and masks his capabilities. They don’t take the time to understand him and realize that his disability is only one part of who he is. That is a reality for many people with disability. In my case, people don’t take the time to understand that some disabilities are invisible, and you never know what someone might be going through. My take away from the show The Good Doctor and my experiences is that we might all have our different stories to tell, but there is one thing that connects us: the desire to be understood.