When I was younger, I didn’t even know that I had something called Ullrich-Turner-Syndrome (UTS). I just knew that I felt different — in ways that weren’t always visible, but always real. Looking back, there are things I deeply wish I’d known earlier.
Things that could have saved me pain, shame, and the feeling that I had to push through everything alone. This isn’t about blaming my parents – they did their best with the information and tools they had. But it’s also important to say: there are things they didn’t take seriously. And I wish they had.
Things I Wish I Had Known Earlier
1. UTS Is Not Just About Height. As a 12-year-old, I thought it was just about being short. That was the one visible thing people noticed. But UTS affects nearly every organ system and involves a complex mix of hormonal, physical, neurological, and emotional challenges. (📚 Source: Bondy, C.A. (2007). “Care of Girls and Women with Turner Syndrome: A Guideline of the Turner Syndrome Study Group.” The Journal of Clinical Endocrinology & Metabolism.)
2. Executive Function & Mental Load Struggles Are Part of It. It took me years to realize that my difficulty with organizing, planning, and emotional regulation wasn’t a personal failure – it’s common in people with UTS. (📚 Source: Hong, D.S., Dunkin, B., Reiss, A.L. (2011). “Cognitive and neurological aspects of Turner syndrome.” Current Opinion in Neurology.)
3. You Can Have a Normal-Range IQ and Still Struggle. One of the most invalidating experiences is when people assume you’re fine because you’re “smart.” UTS-related challenges are often invisible and misunderstood, especially in social settings or under stress.( 📚 Source: Gravholt, C.H. et al. (2017). “Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting.” European Journal of Endocrinology.)
4. Medical Care Should Be Coordinated and Lifelong. I wish someone had explained the need for long-term, interdisciplinary medical support. Cardiology, endocrinology, fertility – UTS affects it all. Early hormone therapy can make a difference not just physically, but also emotionally. (📚Source: Turner Syndrome Society of the United States – www.turnersyndrome.org)
5. It’s Okay to Grieve the Things That Are Different. I spent so long denying my needs or pretending things didn’t hurt. But grief is valid – whether it’s about infertility, delayed puberty, or feeling socially behind. It’s not self-pity. It’s healing.
Things I Wish My Parents Had Taken More Seriously
• My emotional and social struggles. I wasn’t just “shy” or “sensitive.” I needed understanding, tools, and support.
• The importance of early hormone therapy and screening. Almost all medical appointments got delayed or dismissed — out of fear, denial, or overwhelm.
• My right to know and see specialised doctors. I wish they had talked to me earlier and openly. It’s my body and my life.
• The impact of invisibility. Just because I wasn’t “severely” affected in every way doesn’t mean I didn’t need accommodations, therapy, or reassurance.
Journaling Questions for You
- What are things about your condition or identity that you wish you’d known earlier?
- Have there been times where your needs weren’t taken seriously? How do you make space for them now?
- What would you tell your younger self if you could?
Until next time – stay messy, mindful and magical. ✨
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