Let’s talk about sex

People living with invisabilities may be suffering in silence

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I’m a 20-something living with an invisability and yes, I have sex.

Arthritis is commonly viewed as an “old person’s disease”, but that’s not the case for many young people out there. While it affects every aspect of your day-to-day life, sex oftentimes gets left out of the discussion.

Sex with an invisability is real. We’re out there, but no one is talking about it.

When I started having sex, I was lost, like many people are, except I didn’t have a resource to turn to that wasn’t dedicated to an older population with stale scientific diagrams.

Youthful sex forums or resources don’t typically dedicate a section to the arthritic, making the whole experience seem foreign, scary and serious.

Was this all telling me that only old people, or no people with arthritis have sex? Can I only have sex like an old person?

Obviously not.

Eventually, I just dove into bed with my boyfriend and we figured it out as we went along. While it definitely isn’t always easy, we’ve had mind-blowing sex that went beyond what those brochures made me believe.

I soon realized that sex didn’t have to be so serious just because I had arthritis — in fact, it was really fun.

According to research, an orgasm has been found to block pain in some cases.

I’m not saying it works for everyone, but for me, it’s real. My boyfriend is literally like medicine to me.

It was an empowering discovery that I could have sex and not be seen as my invisability.

I knew I couldn’t be the only person facing these challenges.

Amy Hanes, ArtSci ’14, was diagnosed with epilepsy at age 12. Ten years later, she finds herself unable to have an intimate relationship.

While there are many different types of epilepsy, Hanes experiences a type of epilepsy that involves grand mal seizures, which leads to a loss of consciousness and violent contractions.

Since the beginning of the academic year, she’s experienced four seizures.

It takes Hanes at least a day to recover. She said it can be hard for others to understand that it isn’t just the two minutes of her life taken by a seizure — her invisability takes over the rest of her life as well.

“I feel like I’ve been living at the bottom of the well,” she said. “It’s like you’re so dizzy from all the medicine that you’re taking and you don’t really know what’s going on.”

Nausea and fatigue are also side effects Hanes experiences on a daily basis, but she pushes through to attend all her classes.

“I think a lot of people identify me first and foremost as having epilepsy, so it’s sort of a risk if you get too involved with somebody and seeing them as their condition,” Hanes said.

She said it can sometimes become like a parent-child relationship instead of a relationship based upon equal footing.

“I think [epilepsy] has acted as a barrier to a really serious relationship,” she said.

Hanes also finds that there aren’t many resources about sex and open discussion when it comes to sex and epilepsy for someone her age.

“The thing is [epilepsy] is usually associated with younger children,” she said. “It’s sort of hard to struggle with the idea that now you’re an adult, people might not see it as much as they would if you were a kid.”

Body image is something that also plays a role in Hanes’ life and relationships.

“With the medicine I take my weight goes up and down, up and down,” she said. “How can I be in a relationship with someone else when I don’t know myself because things keep changing so much?”

Sometimes it can be overwhelming.

“I can’t seem to sleep,” she said. “I sort of think, ‘what happens if I fall asleep and never wake up again’, which is kind of a scary thought.”

“There are ups and downs,” she said.

But Hanes isn’t short on a sense of humour about her situation. Her positivity is inspiring and is another example of how living with an invisability doesn’t have to be all sad and serious.

Justine Fehr, ArtSci’ 13, is using her invisablity to spice up her sex life.

Fehr is living with a pain disorder caused by a nerve block from a surgery gone wrong in Texas when she was 15, and subsequently developed colitis.

When Fehr returned to Canada, the damage had been done and doctors worked to figure out what was wrong with no records to go off of.

Essentially, all the nerves in her left leg from the hip down are fried, leaving her with pain and limited mobility.

She now has a pump placed in her abdomen that distributes medication to her spinal cord that takes her pain down to a functional level.

“I got my pump put in at the children’s hospital, so no one is coming up to me and being like, ‘oh hey, this is how the pump could influence your sex life’,” Fehr said.

“I think the biggest thing for me is having an understanding partner.”

Fehr has been dating her boyfriend for four and a half years. Conversation and a blunt and sarcastic approach to her invisability is key for her.

“I think [another big] thing for me has been integrating a warm up into foreplay,” she said.

Not every day is a good day, and sometimes, she has to figure out how to make it something special. Sometimes, it involves costumes or lingerie.

“It’s important to be creative and use [your invisability] to have fun in a way that could theoretically give you more possibilities instead of looking at it like it’s some sort of crutch,” she said.

She noted that it’s not about covering her invisability up, but using what she has to make her feel sexy.

It can be hard for people to understand pain when it isn’t an obvious, tangible injury, Fehr explained.

“For me, casual sex would have been just a daunting thing,” she said. “Even in first year of university, all my roommates are going out and trying to pick up guys ... but [my invisability] is not a conversation I’m going to have at 2 a.m. on the way home from Ale.”

Having realistic expectations is also important to having a functional sex life with an invisaibility.

“As much as we plan and prepare, I can have a flare up at any given moment and [sex] is the last thing on my mind,” she said. “It’s just not going to happen.”

She noted that it’s important to know that this isn’t a reflection of anyone in the relationship, but rather the disease itself.

“Even at our age, you can have illness and you can have disability which are things that people don’t associate with a 5’ 8’’ blonde,” she said.

But it is a reality for a lot of people, and Fehr is a strong advocate for open communication and trying out anything that suits you best.

“Just because you have a limitation it doesn’t mean you have nothing going on or you are not able to be a young adult,” she said.

Mary Louise Adams, a professor in the School of Health and Kinesiology, says that everyone, invisability or not, should be communicating with each other to have the best sex life.

“Everybody should be talking about the kind of sexual activities that work for them, the kinds of things they’re attracted to, how their desire is best fulfilled by a partner,” she said.

While not everyone’s sexual desires are the same, it’s important to understand that there doesn’t have to be limitations to your desires, whatever they may be.

“I think people should be able to express themselves however they want and they should be helped, or facilitated or supported,” Adams said.

Adams suggests talking to other people who have similar experiences and looking for information.

“If you don’t find it, create it,” she said.

So let’s do it.

People with invisabilities have sex. There, we said it. What’s your story?

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