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Sonya JF Barnett on the oft-overlooked sexual struggles of those living with disabilities

My very close friend, Elyse, is living with a disability. A couple years ago, she started suffering from seizures that have only gotten worse over time. Her disorder has turned her life upside down.

Elyse is one of the hardest working people I’ve known, giving her all in whatever she does. Her career involved being incredibly social and her extroverted personality was perfect for it. She was a trooper for difficult work, and often made projects better just for her being a part of them, her input creative and infectious.

Shortly after her first diagnosis, so many hospital and specialist visits ago, she was let go by her primary employer because her disorder wouldn’t allow for her to drive a vehicle and it was a major component of her job. Devastated by the loss of work she loved, she tried to make the best out of a bad situation, but it was only the beginning of an incredibly difficult journey into disability.

The seizures have continued to get worse and come often, and she’s gone from doctor to doctor, hospital to hospital in hopes of discovering what the true problem is, all the while suffering from episodes that leave her exhausted and sore, and often badly injured since the seizures are only part of the problem: they cause her to fall in ways that leave bad bruises and deep cuts all over her body. With a seizure, it’s not just the few minutes of the episode you have to deal with, but the ensuing fallout of days of pain, and the cycles of it all overlapping since she rarely has time to recover from one episode before the next strikes. Hospital visits aren’t just research trips anymore, but include stays due to severe injuries sustained from her episodes. Elyse has received gashes, black eyes, a broken nose, broken ribs, sprained ankles, and concussions, many resulting in countless stitches, scars, and pain meds. One of her recent episodes happened while she was cutting fruit, and she woke with the knife blade wedged between her ribs. My texts from her often include the phrase “I’m just washing dried blood out of my hair.”

Additional bonuses of her disorder are the ignorance about it and frequent lectures and misdiagnoses she gets from EMTs, nurses and doctors who refuse to believe someone could be covered in tattoos or scars and not be a drug abuser. She’s often treated like a criminal who is merely too drugged up or mentality unstable to warrant proper treatment instead of someone suffering from a severe disability that so few recognize or understand. After listening to the stories of her latest ER visits, I’m convinced there’s a certain ring in Hell for people in the healthcare industry.

The last two years have been incredibly difficult for her, as she has gone from one of the most confident, independent, and sexually expressive people I know to more of a quiet recluse, having to stay mostly at home for her own safety. She’s gone from vivacious career woman to shut-in, and just getting out of bed these days sometimes seems like a herculean task. In our interview (which also included a trip to the walk-in clinic for a seizure-induced sprained ankle), she tells me, “I’ve lost all sense of independence. At 25, this is a time in my life when I should be making something of myself, with the freedom to do so.”

Fortunately, she has a supportive partner, family, and good friends, who have been with her since the beginning of this whole ordeal. But none of us can come close to truly feeling or understanding what she is going through. All I can feel is rage when I hear about how’s she’s been badly treated and ignored by a system that appears to be beyond broken. Whether it’s uncaring practitioners or lack of funding or a horrifying mix of both, it doesn’t matter. She, like many others with debilitating conditions, are sliding through cracks that will never be filled. She and her family have done what has been asked of them and gone through the bureaucratic red tape of the system, filing documents, getting referrals, making appointments, yet the past two years of it all have yielded close to nothing in proper assistance.

Having a disability like Elyse’s isn’t just about the physical ramifications, but the emotional and mental as well, and they all wind up taking an equal share of one’s body. Her now sedentary lifestyle combined with medications has seen her gain quite a bit of weight, yet she can’t exercise like she used to since it poses such a physical risk. She sees her figure constantly changing, and fitting into clothes can be an exercise in frustration.

She tells me it’s been difficult not to be depressed due to the cycle of pain, exhaustion and loss of self-reliance. She can no longer do simple things like walk across the street to grab an apple, and she tells me with tears in her eyes that one of the hardest things to deal with is not ever having been able to hold her baby niece. She wants kids of her own one day, but that has to be put on the back burner until better diagnosis and care appear– the risks during and after pregnancy are too high in her current state. Then there are the risks that nobody would imagine. Many people who require constant medication have plans that only permit use of generic brands. Elyse was given a special card that replaces generic with brand name medications, when she found out that the generic birth control pill she was using had been recalled earlier this year because the batch contained too many placebos. Should Elyse have become pregnant, things would have gotten all the more difficult, especially since her personal beliefs, though she is pro-choice, would lead her to keep the baby.

Along with her self-confidence and self-reliance, her sexuality has taken a massive hit. Elyse exudes such an assured sex appeal– it’s what makes her so good at what she does as a model, performer and promoter. But for her sexuality and expression of it to be tortured by disability and uncertainty weighs heavy. She tries to view things through a more positive lens: with her weight gain, she says with pride “I’ve got curves!” Her partner is very understanding, and has been by her side, having entered the relationship knowing about the seizures. Together they’re trying to navigate the sexual side of the illness, and it’s certainly got its drawbacks. Due to chronic pain, some positions are no longer possible. Though it rarely happens, seizures during sex can have varying effects: once during a seizure in missionary, he was essentially locked between her legs, a result of every muscle in her body contracting so tight that it’s impossible to escape. To their credit, they try to see the humour in the hardship.

Elyse finds that depression affects the frequency, and the anti-depressants affect the drive, resulting in a catch-22 of sex. She’s struggled through it, sometimes persevering more for her partner’s benefit. Other times, she manages to come through the other side after reminding herself just how much she enjoys sex. But she’s noticed that seizures can often be more frequent during a certain part of her menstrual cycle, the same time that she would normally be extremely aroused.  Thanks to the seizures taking over this time of the month when she often winds up in ER, Elyse’s favourite time for sex has been impacted. “My seizure disorder is cockblocking me,” she says with a laugh.

Getting used to living with illness or disability is difficult enough just trying to get through the day-to-day. Loss of independence and self-esteem affect all aspects of life, and it’s a shame that the more personal – and just as important – aspects, like sexual activity, are often seen as mere collateral damage, things that people living with disability just have to give up, or that they shouldn’t even consider having (I was fortunate enough earlier this year to win a Feminist Porn Award, with Elyse by my side, at the same ceremony that awarded Clark Matthews and Mia Gimp for their experimental short on sex and disability, Krutch. That I hadn’t ever noticed porn highlight disability is testament that more needs to be made and seen).

There are few resources one can access when a condition or disability affects your sex life. Some sites that cater to specific conditions have only small sections related to sex, but there is a notable book from Toronto local, Cory Silverberg (co-founder of the Come As You Are sex shop), as well as Miriam Kaufman and Fran Odette. “The Ultimate Guide to Sex and Disability” discusses in depth how to navigate a healthy sex life while living with chronic pain and illness, and seems, so far (I haven’t finished reading it yet) to be a pretty robust resource.

Sex and quality of life seem often to be nothing but minor considerations for healthcare practitioners, if they’re even considered at all. I’ve seen too many doctors have the attitude that one should just be thankful to be alive, prescribing meds and treatment that merely sustain life, to the detriment of quality. Elyse is an incredibly strong person, and I’ve often thought that if this disability had happened to me or to anyone else I know, I don’t think we’d have managed it as well. And though I sit white-knuckled in the audience when she comes out for a rare stage performance, I’m happy she still manages to keep stoking a bit of her past life’s fire.

Elyse credits her partner for still being able to feel attractive. “When I’m in the hospital with black eyes and a giant bump on my head, he still tells me I’m sexy.” He’s right, because despite the hell that Elyse has experienced and continues to experience, the strength of her personality still shines brightly through. And I’ve always thought she has great curves.


Sonya JF Barnett, also known as “The Madame,” is the founder of an erotic arts community called The Keyhole Sessions and the co-founder of SlutWalk Toronto. Follow her on Twitter @KeyholeSessions

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