Dating can bring up a lot of feelings for anyone. If you're entering or are already in the dating scene as a woman with Turner Syndrome, you may be curious or have specific questions about the process. Some questions may look like “When should I tell a person I’m interested in that I have Turner Syndrome?” or “Will that person accept me for who I am once they know?” Perhaps you are interested in dating a woman with Turner Syndrome, and want to know more about the condition, or what a woman with Turner Syndrome might experience while they’re dating. Let's start by understanding what Turner Syndrome is.
Turner Syndrome
Turner Syndrome is a chromosomal disorder that affects females. Those who have Turner Syndrome are missing or partially missing an X chromosome. Turner Syndrome can physically present itself in a wide range of ways. Some women with Turner Syndrome display physical characteristics such as a broad chest and/or nipples that are widely spaced on the chest, lymphedema (swelling of hands and feet), eyelids that are downturned or weeping in shape, shorter fingers and toes, webbing at the neck, kidney issues, and commonly, a shorter than average stature. It is not uncommon for women with the syndrome to have impaired hearing, congenital heart anomalies (such as an abnormal valve between the aorta and the heart), and even nearsightedness. Other hallmarks of TS, such as the decreased ability to get pregnant, can be a sensitive topic when dating if you or the person you are interested in wants to have children.
On an emotional and mental level, a woman with Turner Syndrome may be more prone to ADHD, Autism Spectrum Disorder, Schizophrenia, and other mental health disturbances. For example, a Turner Syndrome diagnosis makes you twice as likely to be diagnosed with Schizophrenia or similar related disorder; being diagnosed on the Autism spectrum runs a nearly four fold risk. Symptoms of schizophrenia and related disorders may manifest themselves as disorganized thinking, lack of motivation, and delusions, amongst others. While Autism symptoms widely vary, some common features include differences in learning, difficulty communicating in social interactions, discrepancies in sensory input, and more.
A woman with Turner Syndrome may encounter challenges within their learning that make school and education difficult. Additionally, women with Turner Syndrome may report feelings of social anxiety, reduced self-esteem, and feelings of "otherness", all of which can lead to anxiety and depressive symptoms. Such symptoms may include a decrease or increase in appetite, feelings of sadness, worry, or dread, and feelings of loneliness or despair.
Disclosure
Let's say you've met someone you think is special. You may have shown interest in one another, or it's in the very beginning stages of attraction. Should you tell them you have Turner Syndrome? Is it really that important to tell them?
It's up to you to decide when and how you'd like to talk to a romantic partner, potential or otherwise. It largely depends on the circumstances you find yourself in. It may feel better to discuss it soon after meeting. The benefits of early disclosure may mean less stress for you in the long run. It can reward you with the opportunity to be upfront with the other person, helping to ensure there is mutual respect and understanding before things progress further.
Some women may want to wait a while before talking about it to feel out where the relationship is going. Perhaps it doesn't feel right to be vulnerable just yet with someone you're in the early stages of knowing. If that's the case, it may be helpful to ask yourself questions like, "What specifically scares me about letting this person know about my condition?" or "In the past, how did I know when it was safe to talk to someone about Turner Syndrome?" Questions like these can be helpful when considering how and when to disclose.
What's most important to remember is that any relationship is a connection built on trust and understanding. Open communication and honesty can be used as tool to help you delve deeper into a connection you may be feeling with someone you’re interested in. Giving someone the opportunity to know you can be scary, and it’s okay to feel scared. Just keep in mind it can also be a liberating and powerful tool to help assess if this person is someone you want to continue getting to know.
Sex and Body Image
As a woman with Turner Syndrome, body image, social stigma surrounding the condition, fear of sexual intimacy, and "feeling like a woman" can present themselves as concerns. Other concerns like fear of penetration (often due to lack of information or misinformation about Turner Syndrome) can lead to lack of sexual arousal for those who have the condition. One study found that women with Turner Syndrome are less likely to be sexually active overall, which can be attributed to low estrogen levels commonplace with TS, along with mental and emotional challenges. It was also shown that on average, women with the condition tend to have fewer romantic partners over the course of their lives, and tend to live alone.
Sexuality is a healthy, normal part of life. When considering how sexuality can affect women who have Turner Syndrome, it is important to consider the scope of sexuality, which encompasses far more than the act of sex itself. Gender identity, gender roles, sexual orientation, and reproduction are all concepts under the umbrella of sexuality. Your biological characteristics (the body you were born into), how you think, how you were raised, and what you believe in all factors into what makes up your sexual identity. All these concepts can influence how comfortable you feel with romantic partners.
For example, a woman with Turner Syndrome may feel like she isn't feminine enough due to the absence or lack of the X chromosome. In dating, this can cause feelings of shame, embarrassment, and even guilt. Society doesn’t always make it easy for people who do not represent what it considers to be a perfect woman. However, the concept of womanhood is not a one size fits all concept. Women are diverse and multifaceted, and you can be as feminine as you like. Having children, looking a certain way, and other societal expectations don’t have to define your womanhood.
Loving Yourself with ACT
As a woman with Turner Syndrome, you may have experienced feelings of frustration and anxiety that may have begun as a teen, when your body experienced puberty differently than your peers. Unresolved feelings such as these can be difficult to address when you’re considering romance, sex, and intimacy as an adult.
ACT (Acceptance and Commitment Therapy) can help you accept your Turner Syndrome diagnosis, and how the condition presents itself during dating. ACT promotes acceptance of your thoughts and feelings, with the goal of committing yourself to what feels valuable in your life as a woman with Turner Syndrome.
How do you accept yourself if your body doesn’t fit perfectly into societal standards? How do you manage rejection as you navigate dating? ACT encourages you to accept your body as it is; it doesn't have to be good or bad. ACT therapy can help you find peace in just existing as you are. Similarly, ACT therapy can help those experiencing rejection to create distance between themselves and negative thoughts. For example, cognitive diffusion, a technique used in ACT therapy, can help individuals with TS create distance from their thoughts and beliefs about rejection. Instead of holding onto negative thoughts, diffusion can help you to see the thought more objectively, thus promoting more flexibility and adaptability in your mind.
So, let's say you just went on a great first date. After you part, you start to feel insecure and second guess the night. You suddenly have a thought that makes you feel shame and anxiety, and you have trouble letting go of it. The first step would be to recognize the thought. You can even practice saying out loud, “I am having a thought.” Next, try to think objectively about the thought by stepping outside of it. Try to imagine the thought as a cloud or a little balloon passing through the space of your mind. Take the thought and imagine sticking a label on it that says "Unhelpful, untrue" or whatever can help you distinguish the thought as not serving you. Now, in your mind, release the balloon. Imagine it floating away into another sphere of your consciousness; try to refocus your attention on what's happening in front of you.
Dating can be a time of joy, fear, vulnerability, and excitement. Relationships aside, Turner syndrome is an infrequently diagnosed condition, with only 1 in 2,500 people diagnosed. Sometimes it may seem like no one understands what you may be feeling, or you may isolate yourself in fear of nonacceptance. When you feel this way, it is key to prioritize your emotional, physical, and even spiritual well-being. A therapist versed in ACT and other relevant techniques can help to support you by helping you identify your values (including what you consider valuable in a potential partner), increase your awareness when experiencing negative thoughts, and help you cultivate and nurture the compassionate friend within yourself. If you'd like to talk to a therapist, you can call (215) 922-LOVE (5683) ext 100 to be connected with the intake department at The Center for Growth, where therapists trained in ACT are ready to support you as you navigate the world of dating.
