Mental Health and Turner Syndrome

Written by Cassidy Hooper, Turner Syndrome woman and TSF volunteer Twitter Chat Facilitator

What a great discussion about mental health and Turner Syndrome we had on Twitter on March 25th! We got to learn so much from women with Turner Syndrome about their perspectives on mental health as shaped by their own experiences. Mental health is an important topic and not talked about often in the Turner Syndrome community. That needs to change!

Here are some the views expressed by women with Turner Syndrome about their condition and mental health:

Q1: How has your Turner Syndrome diagnosis affected you mentally and emotionally?

  • “Personally, I have had a lot of emotions involved in my Turner Syndrome diagnosis, especially around infertility and such.”
  • “The emotions from feeling so different and alone…and from the infertility.”

Q2: What has been the hardest part of accepting your diagnosis? What made it easier?

  • “I mean, I was diagnosed before I was born, but I think I have grown older and learned to accept myself as a person. It has gotten easier; also understanding Turner Syndrome helps a lot.”
  • “How irreversibly different it made me feel.”

Q3: Have you struggled with anxiety and depression? How have you dealt with it? 

  • “I have dealt with that some, but I try to very purposefully think or do positive things to counteract the negative thoughts/feelings.”
  • “I personally have not. I do consider myself to be very lucky in that I have a very solid support system, and when things do get tough, I have people that I can count on.”

 Q5: What do you think is important for others to know about mental health and Turner Syndrome? Why is this awareness so important?

  • “Anybody and everybody can have mental health issues. Most everybody is going to be able to benefit from counseling at some point, so it shouldn’t be a big deal. Don’t sweat it!”
  • “Yes, I would say that within Turner Syndrome awareness, mental and physical health are both very important. It’s important to treat the whole patient and not just one piece, and with all the health complications that come along with Turner Syndrome, it can be very scary and can make you feel alone.”
  • “That Turner Syndrome can affect our mental health in a variety of ways, whether because of the condition itself or how we/others cope with the diagnosis. The more support and understanding, the better mental health issues can be helped!”

 Q6: How can girls and women with Turner Syndrome maintain their mental health? What do you do for self care?

  • “I love movies and pro wrestling, so I like to watch and unwind. I also like coloring all kinds of pictures with all kinds of markers.”
  • “For myself, I have found that karate can be an excellent form of self-care, and exercise in general. Also, knowing that I have family and friends to help me if things do get hard.”
  • “For me, what helps is talking with others, making sure I find time to pursue things I love, and finding joy by helping others and having others help when I need it.”

Q7: How can we show support to others struggling with their mental health?

  • “We can show support for those struggling with their mental health by being open and honest about how we handle certain situations and also share our self-care routines and practices. Most importantly, listen to others in a non-judgmental way.”

 Q8: What are you doing to maintain your mental health  while practicing social distancing because of the Coronavirus?

  • “I’ve been trying to connect with people via video chat, since I can’t/shouldn’t go see them. It’s been fun to hear from people I haven’t heard from in a long time in the comments when I go live on Facebook and to meet some virtual friends on Zoom.”
  • “I am on admin leave right now because I am a high-risk individual with my heart problems. I am planning open-heart surgery in June. I have gone live on Facebook to do some karate, and I have been journaling to keep up on my self-care.”

These are just some of the views from women about mental health and Turner Syndrome. It is so important to share the opinions and views of women with Turner Syndrome about mental health because it’s so crucial in raising awareness. We hope to continue these conversations that are most important to the Turner Syndrome community. We will have a Twitter Chat every 4th Wednesday of every month. It’s so important to keep the conversation going!


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