Lori is a writer and model living with EDS. She shares her story with liberare.co about disability and sex. Read more of her work on https://bud-to-bloom.com/
I once viewed my body as my personal Azkaban, something which was impossible to escape from and difficult to navigate. My physical limitations produced a deep seated resentment towards my body, as I believed my disability to be burdensome - however now I have grown to accept my life with Ehlers Danlos Syndrome, in spite of how challenging and complex it may be. This self-discovery fueled a passion within me to embrace who I am, and put myself out there. One of the ways I did this was by exploring sexual relationships, and from this I learned how to prioritize effective communication in my pursuit of pleasure; all the while being mindful of my unique health needs. Although this, like any journey, wasn’t without a few bumps in the road!
To ensure your needs are supported before, during, and after sex your partner(s) need to have an understanding of what your disability entails, how it affects you, and how to best adapt sex to suit all parties and your respective needs and interests. This doesn’t mean you have to disclose your entire medical history, but if it’s important to consider when moving forward it’s probably best you give it a mention. For example I have an overactive bladder which has resulted in partial urinary incontinence - so I need to wear pads for the majority of the time, and depending on the day, I may need to put a towel down on the bed just in case. So it’s wise to be prepared.
Our state of health is unique to us, and therefore it affects parts of our life differently - such as one’s range of movement, balance, coordination, pain levels, skin sensitivity, and physical strength; so how we have sex is going to depend on these factors. Yet this doesn’t mean we cannot enjoy ourselves or experiment - if anything it’s quite the opposite, as these ‘limitations’ force us to explore ways to overcome obstacles and work as a team. One thing I used to struggle with was trying to find physical comfort during sex, as I have acute pelvic and spinal pain, so certain positions are uncomfortable and offputting, so don’t be afraid to voice how it feels, and what you think would help. A similar example is when I had to begin monitoring my energy levels throughout the day to understand how I could ensure I had the most energy possible to maintain mental presence to have as mindful of an experience as possible, and connect with my body and my partner’s more effectively.
Once I would have felt bad for not being able to do things in the typical way. But our complex needs are not laboursome or a hindrance, and if someone is making you feel like you’re being taxing, demand they leave. Your partner(s) needs to be respectful of your needs, because you deserve nothing less.
Communication regarding our disability and overall wellbeing isn’t a one time thing, and this applies to sex too - it should be constant, as pleasure cannot be achieved when one person is suffering in silence.