Something a little more personal
As we just had TS Awareness Day (in the UK) on 21st June, I thought I’d do a post that was more personal and a bit of an insight into how this condition affects me (and possibly others). In all honesty, it's also partly due to the fact that I'm still deciding which show to write about next as one of the greatest TV shows of all time (‘Inside No.9’) very sadly came to an end recently so I’m trying to figure out which shows to watch and discuss next. I’ll also definitely gush a fair bit about this brilliant show and amazing creators/creatives over the next few posts though…
Firstly, for those who don’t really know about the condition or my experience with it, Turner Syndrome is a genetic condition which can affect development in girls and women. There's a video which I'll attach at the bottom of the post as well as it explains a lot better than I would, tbh.
It can affect girls and women in many different ways, as it can potentially cause complications relating to the heart, thyroid and hearing loss, as well as many other factors and health concerns. I’m not personally affected in any of those ways but, despite how vastly differently the condition presents in different people, infertility and a short stature are some of the things that practically all TS girls and women share and as anyone who knows me knows, I’m a little on the short side and am constantly reminded of that, which is always fun.
A lot of the time (at conferences and with the great TS podcast with Emily Seymour), the physical health side of TS is discussed more than other aspects (which I can understand) but with this post, I’m mainly going to focus on some aspects that haven’t really been brought up as much, imo. These include the mental health side and things such as anxiety, self-worth, low self-esteem - all that fun stuff.
I was really fortunate in a lot of ways regarding my childhood/home life etc (sorry if we’re getting a bit deep but also cliched here already). I’m told I was quite a happy, carefree child (and possibly even more cringe than I am atm if you can believe that, so I don’t know what that says). I may have had bouts of self doubt/feeling low beforehand but it wasn’t until I got the diagnosis at nearly fifteen (and then had some bad volunteering experiences not long after that…) that it really took SUCH a significant plummet. In fact, to an extent, I’m still feeling the effects from the hit my confidence took. It might be too late to say this now but I wouldn’t want to bore you with too many details but my mood, anxiety levels and any semblance of self-esteem were all extremely low at points (well, my anxiety levels weren’t that low, so there’s a bright side).
Getting to know other girls and women with TS alleviated some of the doubt and uncertainty surrounding the diagnosis, to some degree, and I’m grateful for the support that I received and for what the TSSS* do as there are a lot of lovely people involved. However, while I’ve made some friends through TSSS, I still often felt a bit on the edge as, for the most part, they already knew lots more people through groups/conferences etc and I didn’t seem to have much in common with many of the people we met. I also kept it pretty secret from most of my peers for years so it felt vastly different from any other part of life and I was desperate to not be defined by my TS. In general, it became harder to feel like I belonged anywhere as while I had friends, I didn’t really feel like I fit in with that many peers at school (or even at uni) or
at the TSSS events, so it made the already very isolating experience of having TS feel even lonelier. This was especially the case as there only seemed to be negative things associated with it, because, it is pretty shit in all honesty (I haven’t really been swearing for that long so hope that doesn’t feel too out of place).
Despite all this, there have also been some positive memories related to shows and kind friends that I’ve made that have helped me through so I really hope that I can help anyone else who’s maybe dealing with similar feelings of isolation or low self-esteem (whether you have TS or not).
Much love (as always) and thanks for reading.<3
*Turner Syndrome Support Society (UK)
You are amazing xxx
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