Welcome back to those who have visited my blog before! If you’re new, welcome, and let me introduce myself!
My name is Charli Dee. I was born with a genetic disorder called Turner syndrome. Turner syndrome is a condition when a girl is born with one of her X chromosomes partially or completely missing. This can lead to a lot of complications. I talk a lot about the complications I deal with here on my blog. You can visit those posts here.
I have also been dealing mental illness, more specifically depression. I talk a lot about my mental health journey on my blog as well. You can visit those posts here.
For a long time, I kept my struggles to myself. That means I didn’t have peer support from people who would understand what I have been going through. Part of why I started this blog is to share my experiences so people know they are not alone. Now I am starting a Facebook group so we can support each other.
If you are interested in having a private safe space to discuss your unique experiences, join my brand new Facebook support group. Click here to join.
Thankyou for reading and your support! Let’s continue supporting each other!
A very popular YouTube couple expecting their first child chose to terminate the pregnancy after discovering the baby had a high chance of being born with Down syndrome. He shared the news with complications that can come with the condition.
“Down syndrome carries a very HIGH risk of miscarriage and usually comes with heart defects, structural abnormalities, developmental issues, shorter lifespan, etc. As excited as we are to become parents, this was a gut-punch”, he shared with his followers.
Yes, Down syndrome comes with complications. However, the complications are only part of the story. Down syndrome is actually a very common, “occurring in 1 of 700 live births”. Many people with Down syndrome live fulfilling lives, with some going on to college and living independently. With medical and technological advancements, the lifespan of people with Down syndrome has increased to around 60 years of age.
I have Turner syndrome, which is a genetic disorder like Down syndrome. Turner syndrome also comes with a lot of complications. Turner syndrome is a genetic disorder, and can be diagnosed in the womb through genetic testing like Down syndrome. I wasn’t diagnosed until I was around 13 years old, but it is possible my parents could have found out I have Turner syndrome before I was even born. They would have been able to choose abortion due to the fear of complications and raising a special needs child. My parents would not have chosen that route. However, they could have, and I would not be here sharing my story on my blog.
I’ve seen expecting parents express fear at having a child with Turner syndrome, just like I’m sure expecting parents do when having a child with Down syndrome. Knowing your child will have special needs can be scary. Raising a child with special needs is hard. I get it. This is why support and sound facts are important, all the facts. Yes, parents need to know life might be hard for their special needs child, but parents also need to know life can be happy and fulfilling for that child as well. It’s not all gloom and doom.
I’m happy to be alive, and I know I’m here for a reason. I believe that YouTube couple’s baby had a purpose too. Sadly, we’ll never know what it would have been.
Watching the documentary on Theodore Kaczynski made me think about violence and mental illness. It is true that Kaczynski was diagnosed with schizophrenia and depression, and he committed crimes. It is also true, however, that mental illness doesn’t have to lead to violence. Theodore Kaczynski’s case was years ago. Mental health advocacy has helped to break the stigma on mental illness. However, there is still a ways to go. Just last year in 2025, the vice president of the United States JD Vance stated there is a mental health crisis in the United States when addressing the concern of gun violence in the country.
“We really do have, I think, a mental health crisis in the United States of America. We take way more psychiatric medication than any other nation on Earth, and I think it’s time for us to start asking some very hard questions about the root causes of this violence,” the U.S. vice president said.
Robert F. Kennedy Jr. , who is the Health and Human Services Secretary said the National Institutes of Health are “launching studies on the potential contribution of some of the SSRI drugs and some of the other psychiatric drugs that might be contributing to violence”
JD Vance and Robert F. Kennedy Jr. seem to be assuming that mental illness causes violence. The truth is, only around 3 to 5 percent of violent acts are committed by people with severe mental illnesses. Also, only around 1 percent of gun related deaths are caused by people with severe mental illnesses. People with mental illnesses are actually more likely to be victims of a crime than perpetrators. For instance, Schizophrenia is a very stigmatized mental illness. In one research study, around 2.3 percent of people diagnosed with schizophrenia had been charged for a crime, while 34% of people with the condition had been victims of a crime around the same time of the study.
I have long been under the impression that mental illness is not an excuse for evil deeds. An evil person is just evil, whether that person is living with mental illness or not. I have a family member who works with children with disabilities. Sometimes the parents coddle their children. Sometimes if the parents are told that their child is biting or scratching the teacher and other children, the parents might say “my child does that sometimes”. Wrong response. The child should not be not be attacking the teacher or other children any time. Disability does not need to lead to bad behavior. Same with mental illness. Society should not immediately point to mental illness as the reason a person committed a crime. That only leads to stigma around mental illness, and many people believing that having a mental illness equals violent. That can cause a person with mental illness to avoid getting help because they don’t want the label. I used to be one of those people.
More and more people are reaching out for help with mental illness. More and more advocates are speaking out. I love seeing it. Unfortunately, stigma still exists, so there is still work to do. If you are dealing with mental illness, know that there is nothing to be ashamed of. Know that your mental illness does not make you a bad person.
Thankyou for reading, and see you in the next post!
Hello all, and welcome back to my blog! In a recent post, I discussed spending more time with my family and how it’s been helping my mental health. I talked about visiting a cafe with a family member. It was amazing bonding with him, and we plan to visit that cafe again.
On another day, I and that same family member went to smoothie shop with another family member. The three of us bought different smoothies, but we also tried each other’s drinks. I loved all three! We even talked for a while with the owner of the store. He was so pleasant and easy to talk to. We’ll definitely be returning to that smoothie shop!
In a post I wrote a while ago called Judgements and Assumptions, I talked about my social anxiety. I went in to detail about how I assume people are always judging me, and that made me nervous. Even interacting with people I know well caused anxiety. I’m still learning to be more confident, but I’ve come a long way since I wrote Judgments and Assumptions. I’m feeling more comfortable in family gatherings, and moments like at the cafe and smoothie shop showed me that my family enjoys spending time with me.
I still get nervous from time to time, but I’m learning to push through the anxiety by embracing who I really am. I also remind myself that I am loved. Realistically, not everyone is going to like you, but that is ok. You also have people you will always be in your corner.
Here is a reminder that you have worth, and a little encouragement to step out of your comfort zone.
Did you know that February is Turner Syndrome Awareness Month? Since we’re in March now, I’m late to helping spread awareness, but better late than never as is always said! Also, any time is a good time to spread awareness! I’ve talked a lot about my experience with Turner syndrome on this blog, and I wanted to share a little more in this latest post. I haven’t talked much about this on my blog, but I receive disability benefits. It was not easy to prove that I really needed the benefits, as my disability is invisible. I was diagnosed with Turner syndrome at around 13 years of age. Turner syndrome can cause a lot of complications. One of those complications are learning difficulties, which I have.
Even before I was diagnosed with Turner syndrome, my parents and teachers noticed I was struggling to keep up with my peers. This made school and many everyday activities difficult for me. My father wrote a heartfelt letter detailing his experience raising me and my day to day struggles. He sent it to the court handling my case for disability benefits, and the court clerk read it. The clerk cried and suggested the judge read the letter too. The judge did read the letter and ruled in favor of my father and I. This was just the first of several hills to climb in my adulthood concerning help with my disability.
Recently, my father found the letter he wrote, and I read it over. It was very interesting reading about my day to day struggles through my father’s perspective. To most people meeting me, I might not appear to have any disabilities, especially if they just spend a few minutes with me. However, to my father and those who know me well, my disabilities are striking. Also, Turner syndrome and the complications connected to the disorder are not well known, so those assessing the need for disability benefits had a difficult time understanding why I need them.
Turner syndrome affects those with the condition differently, so it’s important to clarify that the condition does not always lead to disability. Many women lead typical lives. However, for those like me who do develop difficulties, it is important for them to feel supported. I started my blog for this reason. For a long time after I was diagnosed with TS, I didn’t want tell anyone about my condition. I only told a few people and kept many others at arms length. As time rolled on and I struggled with getting disability benefits, I knew I could no longer keep my condition to myself. I knew I had to share my experiences. My hope is other girls and women with TS feel understood.
There is nothing wrong with living with a disability. Sometimes it can be a different and beautiful way of experiencing the world. However, it is important to remember that not all disabilities are easily visible, and people with disabilities can live typical lives with a little support.
Hello everyone! Welcome back to my blog! I’m so sorry I’ve been away for a while! Life definitely has a way of keeping us busy! However, I made sure to have some down time too. For a long time now, I’ve been talking a lot about my mental health. For those who are new to my blog, I suffer from depression. It took a long time for me to start seeing a therapist and even longer for me to start psychiatric medication. I didn’t want to admit that I had a mental illness, but I was in desperate need of help. My mental health was so bad that medical staff asked if I would like to be hospitalized during my consultation to start therapy. I declined hospitalization. The staff respected my decision, but connected me with a therapist and psychiatrist right away. I started seeing a therapist every week and a psychiatrist every month. I was given the contact information for my mental health team and the Suicide Prevention Hotline, all of which I used frequently. I’m very grateful for the efforts of my mental health team, and I’m happy to share that I’m seeing a therapist and psychiatrist once a month now. I’m to the point where I can’t fully remember the last time I had a depressive episode or contacted the suicide prevention hotline. I’m happier than I’ve been in a long time.
My improved mental health has had a wonderful impact on my everyday life, particularly my social life. I’ve always had a very close relationship with my family, but now I’ve become even closer with them since my mental health started improving. I used keep to myself and avoid family gatherings, feeling my presence wasn’t wanted or a burden. I know better now, and know how much I’m loved. I regret missing out on so many moments with my family. I don’t take spending time with them for granted anymore, and treasure each moment. Last summer, I went to a barbecue where I had lots of fun, and in the Fall we went to a farm. We took so many pictures at the farm and picked lots of apples. Just last week, one of my siblings and I went to a cafe. We made ourselves comfortable and bonded over a yummy donut and delicious coffee. We also bonded on our walk to and from the cafe. My depression made me feel isolated, and if I was still struggling, I would have missed out on building precious memories with my family.
Now that my mental health is looking good, I’ve been trying to get my physical health in order as well. Mental and physical health compliment each other after all. I want to look as good as I feel. I’ve started gaining a lot of weight in a short amount of time. Late last year, my father and I agreed to start putting some exercise into our schedules for the new year. We’ve been keeping our promise to each other so far, but it definitely hasn’t been easy. Not only has exercising been helping with my physical health, it has helped with my already close relationship with my Dad. Exercising together has brought us even closer.
The start of my mental health journey was definitely a turning point for me. I have changed for the better. During a conversation with my pastor at church recently, he asked if there was a period in my life I would return to. I answered there is no time in my life I would return to. “I’m happy with the life I have now” I said. For once, I really meant it.
Hello all! Welcome back to my blog! I have talked a lot about being a person with a disability here on my blog.
I was born with my disability, but many people with a disability were not. The disability group is unique in that it is one minority group where people become part of it at any time. Accidents can happen, or illness can lead to disability. Also, as a person gets older, there is a large chance of them becoming disabled. Of all people with a disability, half are age 65 or older in my country of the United States. Overall, approximately 1 in 4 adults are living with some type of disability in the United States.
Unfortunately, some people have a disability that is debilitating enough to keep them from working. Fortunately, there is financial support available for such people. One program set by the United States government is Social Security Disability Insurance or SSDI. With SSDI you can receive financial support monthly. If you are dealing with a disability, you can get help to find out if you are eligible for SSDI and even how much money you might get each month from Disability advocacy group Disability Advice. A post with an SSDI calculator and details about SSDI benefits can be found on their website.
The post was written by Linda Cosme, JD. She has extensive experience as a lawyer and advocate for people with disability. She is currently Vice President of Disability Policy and Strategy at an advocate organization called Citizens Disability. Independent Legal Consultant for those seeking SSDI, appeals officer for the Social Security Administration, and Case Adjudication Specialist for Disability Determination Services were some of her other roles.
Checkout Disability Advice’s website and find out more about SSDI and if you should apply. Click here.
Access to affordable healthcare is a huge issue in the United States. Many people are uninsured. Access to healthcare is necessary and should be a right. Read more about the issue with healthcare in my latest blog post.
Some time ago, I wrote two posts entitled “Why is Healthcare so Expensive?”. In those posts, I went over how difficult it can be to get mental health services and some of my medical costs as a person with a chronic condition and mental illness. You can read part one here. You can read part two here.
For those who are new to my blog, I live in the United States. Here in the USA, healthcare can be quite costly. A three day stay in the hospital can run you around $30,000. A woman usually stays in the hospital between 24 hours to four days after giving birth. My own mother stayed in the hospital for around three days after having me. That’s where health insurance comes in. In order to have insurance, you have to pay what is called a premium. This is the payment to the insurance company to keep your insurance active, which is usually a monthly payment. My insurance plan covers the costs of my doctor visits and medication bills completely, but that is not the case for most Americans.
For many Americans, there is a copayment. For a doctor appointment, one family member of mine had to pay over $700 in copayment. Another family member recently renewed her insurance plan, and she has to pay around $1,100 in medical bills before her insurance even kicks in. This is called a deductible.
Healthcare is big business here in the United States, with the health insurance business valuing at $1.60 trillion. In 2023, 25.3 million people were uninsured between the ages of 0 to 64. Among those uninsured, 63 percent of people between the ages of 18 to 64 cited not being able to afford insurance as the reason for being uninsured.
There are two services I have always believed all people should be entitled to: good education and good healthcare. A healthy and educated nation makes a strong nation. I believe we as a nation need to do more to help the citizens have better access to healthcare.
“What the teacher is, is more important than what he teaches.” – Karl Menninger
What makes a teacher great is compassion and the ability to connect with one’s students.
I have talked several times about amazing teachers on my blog. I have also talked several times about being a person with a disability. My disability made going through school difficult. Despite my struggles through school, I have a college degree, and I managed to graduate college with honors. I wouldn’t have been successful without the help of wonderful and compassionate educators. One such educator was one of my college professors, who I will call Prof. A.
Since I was a student with a disability, I received accommodations. One accommodation I received was extra time on exams. Also, I took my exams in a separate location from my classmates to lower distractions, usually in a room at the office for students with disabilities. During one exam for Prof. A, I was unable to finish the test, even with the extra time. Prof. A took the time to check on me while I was taking the exam. When she found out I wasn’t finished with the test when time was up, she told me not to worry. She took me to her office and had me continue the test there. Before she took me to her office to finish the exam though, she took me to the cafeteria to eat, knowing that I had been working on the test for hours.
In that moment, Prof. A showed me what it really means to be an educator. She showed me that teaching includes more than the ability to pass on information in a digestible way. Teaching also comes with a heart ready to love and understand. This is a what makes a great teacher.
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.
Life with Charli 