Living with Turner Syndrome (Missing a X Chromosome)

how do you feel when you see yourself I mean I feel like I get like automatically super self-conscious I said always been the case yeah I was diagnosed with Turner syndrome before I was born I've had some like mental health things over the years that have been hard what is Turner syndrome Turner syndrome is either the complete or partial deletion of one of your X chromosomes it only affects people who are a designated female at birth and have two X chromosomes I think this is part of social anxiety really is in your head you think you're coming off differently than you actually are so a lot of times I will get very in my head and I'll go back to like my mom or something after a party and be like I can't believe I acted like that like I can't believe I was like so awkward like why'd I say this why did I do that and she's like what are you talking about you look fine so I mean that definitely is part of it but um yeah I think I've also over the years kind of gotten better and this isn't necessarily a good thing masking what I'm dealing with a little bit more what did you think when you first heard the words Turner syndrome a lot of confusion a lot of mystery we had no idea what it was it mentioned abortionist as a possibility and you know we said no this is our child and that we would not want to do that and then he did say well you know go home probably within the next month or so you will have a miscarriage it's about 99% of fetuses with Turner syndrome are either miscarried or stillborn and they think that fetuses with Turner syndrome account for about 15% of all miscarriages I remember lying in bed and feeling Celeste kick and wondering will this be the last time and I'm sorry my family has kind of attached this whole like mythology around my birth that I don't necessarily agree with the story is like that the doctor offered my parents an abortion because back when I was born they knew even less about TS than they do today you know had I known Celeste in utero I would have known that it would have happened because they're so spunky and strong-willed and determined and and stubborn that it was going to happen what is it like to live with a rare genetic syndrome um I think it can feel very lonely I think it can feel pretty confusing at times and I think it can also be empowering in some ways because you know as much as it has been hard growing up not really seeing you know a face or a body type like mine like every day or being able to talk with someone who understood exactly what I was going through it kind of made me proud to be unique and it made me I think care a whole lot less about like fitting in or worrying what other people think because it's I don't know I mean I've just kind of gotten to the point in my life I guess where I'm old enough that I embrace it if somebody wants to be your friend what should they do just come up and say I yeah it's really that simple I'm I'm always down for a new friend how does TS impact you um well it kind of depends like the physical symptoms are that I'm shorter in stature I have like broader shoulders a wider neck my eyes kind of like turned down at the ends a little bit I know like one of the first things people notice a lot of times is my height but hotel are you I'm 411 and 3/4 so yeah and PS also comes with a lot of times some learning issues and some mental health issues both of which I have had what did you think when your parents told you that you didn't have that X chromosome for the first time I was um I didn't completely understand what it meant for my wife to be honest I was just kind of like okay cool when I was really little I didn't really understand that anything was different about me at all I knew I was like short but I am like if you had taken me to like a sleepover which I wouldn't have gone to because I was terrified of those I would have looked at the other kid had been like so where is your growth hormone injection like don't you get one too like I don't understand what's going on as I've gotten older I also kind of wish they had told me sooner because I feel like 7 was a little old tonight like entirely understand what was going on with me it definitely made me question when I was younger like well what does this mean for me like biologically like if I only have one X chromosome like what does that make me what do you view yourself as so back then I kind of had this viewpoint which is the viewpoint of a lot of people with Turner syndrome like oh that doesn't make me any less of a woman like just because you only have like one X chromosome or like can't have kids like there's nothing less female or less feminine about that but as I got older and like I met more LGBT people I was like there might be something a little bit more here a lot of people who have met with yes are actually like quite feminine and very happy identifying is female but if you look up the definition of intersex Turner syndrome is actually technically an intersex condition and I grew up kind of like wondering about that like that was a question I asked when I was really little - my mom was like well if I don't have one X chromosome does that make me like a boy or a girl like what does that mean because girls have xx and boys have XY so then one can you tell me a bit about the importance of pronouns sure when I hear someone use she heard that can kind of trigger dysphoria because it's not how I view myself if that makes sense how do you view yourself I identify as non-binary so I don't identify a hundred percent as a boy or a hundred percent as a girl I feel most comfortable kind of using they them pronouns if somebody uses the incorrect pronoun will you be offended no I honestly I think probably the worst thing to do in that situation is to like freak out and apologize and be like oh my gosh I'm so so sorry and make like a big deal out of it like assuming the person's doing it unintentionally just correct yourself and just like move on with the conversation that's kind of what I want people to understand about me it's just because there are some things about me that you might not understand there might be a little bit different doesn't mean that we can't connect what was it like for you when Celeste was going through the height of their mental health struggles that that it was another challenge that we worked on trying to find solutions and that we worked together as a team and that there were a lot of hard things going on and some things that we didn't understand but we just kept plugging at it okay I think he's just he's not sure what he's allowed to say I started drinking around 1516 and the first time I ever did drugs though is 17 what we thought were anxiety and depression only we also learned that there was abuse of drugs as well were you using to mask something yeah I was definitely trying to numb like the emotions that I was dealing with what have you learned about the importance of talking about these topics well first off the the abuse of drugs had reasons to begin but the continued and the continuing use of drugs is something that I've learned through going to Nara nan and to al-anon meanings it's it's an illness it's a brain imbalance a chemical imbalance in the brain and it's it's something that isn't something that can be cured but it can be managed there is a saying in like the recovery community that you only have to do it for 24 hours at a time and that's a really helpful way of looking at it because doesn't have to be the rest of your life you just gotta get through the day every every challenge that Celeste has come up against they've proven that they can do just about anything that they put their mind to so I see daily growth and you know we talk about stepping stones a lot Celeste uses their stepping stones quite well each one leads to another one leads to another leads to another another new challenge even if you're nervous about it you step up and you do it one of the things that I'm most proud of is the fact that Celeste has worked really hard to be who they are and has really been very patient with all of us in you know in in supporting us in understanding and and helping us to think things through with them when somebody's finished with this video and they go on about their day what's the number-one thing you hope they learn I hope they learned that you know there's people out there with a lot of different types of differences and that it's just a reflection of natural human variation and that it's okay to ask questions it's okay to be curious but it's not you know scary or weird or anything like that and it's just like I said it's like a beautiful reflection of how different each person can be

Channel: Special Books by Special Kids

Views: 1,944,309

Keywords: Turner syndrome, SBSK, Chris Ulmer, Celeste, Inclusion

Id: DhypDYP3OI4

Length: 13min 5sec (785 seconds)

Published: Thu Jan 23 2020

Reddit Comments

[u/Bucketbotgrrrl]

First video I saw before they turned off the comments- they were so nice! They were a lovely guest and seem like a super person! I learned a lot about Turner Syndrome ty! I hope they can come back again for another video sometime :D

[u/riparian_delights]

I loved Celeste's warmth and authenticity and thoughtfulness. Thanks, Chris and Celeste.

[u/SilverFox8188]

Hate that they turn off the comments!

[u/bear__attack]

The supportiveness of Celeste's parents is so heartwarming. I know this is a snapshot of their life amd everyday probably wasn't so sunny - but the way their dad described facing hardships together almost made me cry.

[u/anti_prodigy]

Thank you for sharing Celeste's story Chris. They were very captivating and had such poise. Their parents must be so proud!

[u/Dimi-DunMorogh]

Celeste's mother must've been really beautiful when she was younger

[u/kmjudd]

Thankyou so much for this video.. I lost a child a short time back to turners syndrome and this video helped me understand so much more.. Thankyou.

[u/somanyroads]

This is a very special one 😁 as a queer man, I really valued that they were able to "adopt themselves" into the LGBT community and find a language and orientation that fit them best. Not gonna lie though...I cringed when dad slipped and said "she". I understand that feeling, as a parent, to want an identity for your kids that you can relate to. This person has an unusually hard time with defining themselves...such an unusual condition to have!

[u/Makememak]

What a lovely person. Totally genuine. I wish her well in life.