Sense and Sexuality: Chronic Illness Edition

About the Author: Lori is a writer and model living with EDS. She shares her story with about disability and sex. Read more of her work on

Living with a chronic illness is like a full-time job, just without the paycheck and days off. Therefore it can be consuming and suffocating and the process of receiving a diagnosis and fighting for treatment whilst juggling every other aspect of life is draining (both emotionally and physically). So it’s no wonder that so many of us disabled folk experience mental health problems alongside our conditions, especially as we live in an ableist society that can be exclusive and ignorant to the issues we face as a result of our disabilities.

I went through quite a dark place a few years ago, and in looking back I see a lot of crossover between attitudes surrounding my conditions and the deterioration of my mental health; which triggered my internalized ableism - thus affecting how I viewed myself and my place in society. I felt lesser than, despite never perceiving other disabled people as such; it was to be a double standard I enforced for some time. I compromised in every area of life, in particular in a relationship, which was incredibly toxic - and during this period of my life, I lost myself completely, and had to work to find who I truly was, and not just what society expected from me, or how other people made me feel.

This entailed continuously challenging my internalized ableism and confronting these insecurities in an effort to unpick and rewire a psyche manufactured from trauma and self-neglect.

Although one area I failed to consider was my relationship with sensuality and sexual expression, as I had previously considered this to be something between two or more people; but oh how mislead I was!

It’s an incredibly intimate part of our identity which is entirely unique to us; and sometimes we lose this connection because of everything else we have to navigate. However it’s very important for me to maintain this connection - and helped me learn to find unapologetic acceptance, and embrace my entire self with both hands; which has been one of the most freeing experiences of my journey so far.

This meant actively engaging with my sexual health, as I was so focused on the health issues associated with EDS and my comorbid conditions that I failed to consider sexual health with just as much attention, so for the last few months I have been on a mission to change that. My body is something I strive to cherish and feel confident in - so this means I need to embrace the rolls, scars, excess skin, cellulite, and bruises; because my conditions and symptoms do not prevent me from being sexy, and I don’t mean in other people’s eyes, but rather in my own - as I don’t live to solely satisfy others, and I certainly no longer feel a need to hide this big part of my life.

In January my friend Emily and I arranged a photoshoot together in efforts to feel empowered within our own skin, as both of us have struggled with internalised ableism. The shoot certainly lit a spark for me and I have grown quite fond of photoshoots over the past few months and managed to have a mini photoshoot in quarantine, setting up my phone on a timer, using a USB ring light and wearing my favourite lingerie I had a really good time; and it definitely helped lift my spirits.

It highlights the importance to feel empowered within your own skin, comfortable within your disability and the connection with your sexuality - and the way in which we choose to

express this is unique to us, however one thing we all have in common is the need to combine intimacy with accessibility.Because what's more empowering than inclusivity?