Disabled and Sexual is a column by Hannah Shewan Stevens which will explore all the challenges, comedy, and fun that disabled people experience as sexual beings, even while we are desexualised by a predominantly non-disabled society.
I am in pain, like always. Except, now, I am lying in the dark beside someone that I barely know, wondering whether they are capable of handling the knowledge that every nerve in my body is screaming in agony.
I can hear the subtle tug of breath that says they are seconds away from falling into a deep sleep. Part of me is thankful because I can mask symptoms far easier next to a sleeping partner, instead of a fellow insomniac. Another part feels the loneliness and frustration knocking at the door, informing me that they will be accompanying the pain until dawn breaks.
After nearly 15 years of uninterrupted chronic pain, I am accustomed to wearing a mask to hide it from the outside world, and sometimes even my closest loved ones. Pain management therapists and counsellors alike have questioned the use of this mask but I, for the most part, do not consider it a burden.
If I were to express it outwardly every single time I felt pain, nothing would ever get done. My life would be a perpetual cycle of saying “ow” and waiting for the inevitable pitying look and half-arsed comforting pat. No thank you.
I am quite content with how I compartmentalise pain to navigate daily life, however, informing people is still a necessity. If I am experiencing a harsh pain day, people need to know so that I can take it easy, waste less energy on masking and focus on self-care.
Amongst people I know well, this is a simple and easy process. For those who know me best, words aren’t even necessary. They can hear it in the breathing exercises I do, read it in the tightening of a brow and feel it when I withdraw from a conversation. Chronic pain has been in my life longer than many of my closest friends, so communicating its ups and downs is relatively easy, unless I’m feeling particularly emotionally repressed.
There is one noticeable exception: dating. It was not always an issue. Once upon a time, I was happy opening up about chronic health from the very first date. But, thanks to a delightfully terrible relationship where I was pressured into opening up about my health condition and then told it was too depressing, masking became second nature again.
The guilt that came from being told that my pain was making someone I loved depressed crushed me. I concluded that suppressing it would be preferable for everyone in romantic relationships. Now, I know this is wrong and that my pain cannot be held responsible for someone else’s mental health but rebuilding this confidence has been a process. Society’s gross representation of disabled people as burdensome for existing certainly hasn’t helped.
With new partners, it feels especially terrifying. What if they disappear immediately after? What if they pretend to be okay and then ghost? What if they do not believe me? What if they start patronising me? What if they only look at me with pity from now on? What if my groans wake them up in the night?
The last person I dated never found out about the hours I spent battling pain in the dead of night, willing my body to stay still and for the nerves to back off and let sleep take over. I suffered in silence because the shame felt more oppressive than the pain.
But I am learning to untangle this particular web of internalised ableism. It is not easy, though. The first step came a few months ago when I had to have surgery for endometriosis and all my go-to helpers were unavailable. In the end, my friend with benefits came to the rescue and proved that only dickheads respond with disbelief and overdramatic concern.
The vulnerability of opening up to a new person was emotionally excruciating. When I first explained my nerve pain condition to them, the first thing they did was research it. That independent research made my life so much easier. No emotional labour was expended explaining the basics of my condition, they got all the information and followed up with specific questions about the nuances of my various diagnoses.
While I still find it hard to be entirely open because my conditions – and symptoms – are numerous and often too wieldy to tame with dignity, I have faith that it will get easier each time I open up.
Recovering from any type of surgery exposes your vulnerabilities and this particular surgery was no joke. I felt like I’d caught a beating and could barely sit up unassisted for days. Their humour, support and patience reminded me that letting someone in is a magical feeling, even when it hurts a little too.
The old wounds of internalised ableism and past relationship traumas remain and they will never fully heal, not really. In spite of those knotted scars, though, I feel empowered by verbalising my experiences to new people, allowing them to share in this piece of me that remains tightly guarded so much of the time.
It is still a balancing act. I am always flying between what feels comfortable and what is necessary to share in all walks of life: work, friendship and romance. In time, I’ll figure it out and find the method that fits. Whoever is lucky enough to be around will reap the rewards.
My body, my disabilities (and the illnesses that created them) belong to me. Only I can truly understand how they work and impact my life but, like all my other qualities, people coming into my life deserve to get to know them too.
A million pieces make up the jigsaw of my soul and anyone who dates me deserves the opportunity to meet each segment, and so I must learn to share without submitting to fear.
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