Sex and intimacy can be difficult to navigate with a chronic illness for many reasons, but the question of when I should tell my partner about my invisible disability has always been a daunting one. My autonomic nervous system dysfunction can affect pretty much any part of my body, but most consistently it affects my heart. Many people with chronic illnesses have a wide range of symptoms, and the lack of specificity is often hard for friends and partners to understand. Sex is already such a vulnerable experience, and the last thing I want to feel in the moment is “different.” Revealing one’s health history is a personal choice, and I don’t frequently vocalize my struggles, but this is what I’ve learned about having “the conversation” with any current or future sexual partners.‍

I learned that trust is the most important thing to me when opening up about my experience. ‍

There’s nothing wrong with laying it all out on the table right away, but I am still learning how to identify as a person with a disability — even though it’s been nine years since I suffered the brain injury that caused my autonomic dysfunction. It’s easy for our able-bodied friends to tell us that open communication is vital for a healthy relationship, but that shouldn’t pressure you to talk about an issue you aren’t yet comfortable revealing. It’s normal to be nervous when discussing something so private. I’ve been up-front with a partner, and I’ve alternately waited until I felt more comfortable — and it’s helpful if I’m opening up to someone I’ve already vetted as empathetic and understanding. Still. it can be unbelievably painful to receive a reaction I hadn’t been expecting from somebody I am romantically or sexually interested in. Unfortunately, I’ve found it more common than not to receive doubt as the initial response — everything from “If you really have a medical condition, how were you able to hide it so well?” to “No way, you’re too pretty to have a disability.” 

Finding a compatible partner is hard for everyone, but there are specific qualities I can’t compromise on because of my disability. I have had to learn to prioritize my partner’s capacity to be accepting and trustworthy above anything else.‍

Because of insensitive and ignorant comments I’ve received regarding the validity of my condition, I’ve learned I can never predict someone’s response to this delicate subject. So I’ve started telling a partner how I hope they will react. ‍

The conversation has been more emotionally successful for me that way. I want the discussion to be open and honest, but there’s nothing wrong with saying, “This is a difficult topic for me to talk about, and I hope you can be receptive and understanding.” I’ve made the mistake of making the initial chat too casual — “By the way, I have this condition that’s kind of annoying sometimes,” — and then being hurt when I receive an equally flippant response like, “Huh, that sucks.” If I don’t treat the topic gently and seriously myself, then I can’t expect my partner to.‍

When navigating sexual relationships with a disability, I must make sure my body is safe — but I’ve given myself permission to reveal or hide my pain as I see fit. ‍

I often experience sudden bouts of extreme nausea and dizziness, and these symptoms can hit at any inopportune moment, including during a date or during intimacy. Many of my friends have told me that hiding my pain from a new partner is unfair and dishonest, and for a while, I believed them. It took me a long time to understand that, actually, as long as I am aware of my physical boundaries, it is my prerogative to decide how much I want to let on about what’s going on inside my body. One benefit of having an invisible illness is the privilege of being able to hide my symptoms, but the downside is the awkwardness of admitting that I need to take a break. The action of just standing up feels like I ran a marathon, so I need a lot of rest periods throughout the day to minimize my symptoms. But sometimes I will push through with the intention of dealing with the physical consequences because I just want to have a sexual experience that feels “normal,” and there’s nothing wrong with that.

I have lived with my disability for quite a while, so I’m extremely knowledgeable about it, both medically and personally. But I have to remind myself that my partner has not had an ounce of this education or life experience. Not only have I had to get used to explaining facets of my autonomic dysfunction that I find obvious, but I’ve also had to recognize that it’s okay for my partner to need reminders from time to time. I once waited a year to tell a partner about my disability, and then I was surprised when they would forget it existed. Now I know that it’s human to need frequent reminders and explanations. For instance, just because a partner asks questions about how I am affected by my past brain injury doesn’t mean they are being ignorant or insensitive. The biggest aid to ease my anxiety on this subject has been preparing myself mentally for a variety of questions. In fact, I’ve made a list of answers to common questions they may have so I am prepared to answer calmly and accurately. ‍

Navigating sex with a disability is like navigating anything in life with a disability – messy and vulnerable. ‍

I can’t combine the two most intimate parts of life and expect it not to be uncomfortable. It’s okay for me and my partner to make mistakes throughout the process, and it’s okay to acknowledge that things can get a little awkward. What matters most is that there is mutual support and understanding. The biggest change in my life happened when I stopped listening to people tell me how I should handle this conversation with my partner. Now, I just feel out what’s right for me. After all, isn’t that what good sex is all about?