Thoughts on sex and disability

As conversations regarding inclusion and diversity continue to escalate, there is one group that seems to be habitually left out of the conversation: those living with a disability. Few films, television shows or brand campaigns today showcase members of the disabled community. Moreover, sex for those living with a disability remains totally tabooed. As young actress Coco de Bruycker says, “No one really links disability to beauty, sexual attraction or eroticism.”

In an effort to shed light on the sex lives of the disabled, we spoke to a group of female-identifying individuals about their personal experiences and what they wish society would recognize. This is part two in a two part series.

As told to Sara Radin.

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I’m a Czechoslovak American journalist and blogger living in Boston. I’m currently working as PRI The World’s Digital Editor but blog as a chronic illness and disabilities haver/advocate. Journalism is absolutely not a low-stress field so I’ve really had to learn how to balance the daily grind with regularly checking in with how I feel. I’m not always good at it but I’m learning a lot about my own boundaries.

I have an array of health issues and am actually going to Mayo Clinic in July in hopes of finding some more answers. Currently, I’m diagnosed with Crohn’s Disease, severe chronic migraine, psoriasis, fibromyalgia, arthritis as well as chronic pain and fatigue. Unfortunately these all impact everything I do. My energy levels are just completely destroyed most of the time and I’m pretty much in a constant state of full body pain — whether it be from the migraines, Crohn’s or something else. For example my hands are often in so much pain that I can’t hold my partner’s hand. Crohn’s Disease is obviously one illness that impacts intimacy. I joke and call it a pooping disease but it’s far far more than needing to run to the bathroom. Personally, I deal with excruciating abdominal pain, weight loss, joint swelling, vision and skin issues, etc.

All of this impacts my relationship with my body. And obviously my own relationship with my body impacts my sex life. So it’s been a journey and always will be. My hope is to continue to heal my relationship with my own body so that I’m fully able to indulge in a great and healthy sex life.

There are two things I wish people would know about living with a disability/chronic illness.

First off, it absolutely impacts your sex life. I think people so infrequently talk about disabilities and chronic illness that fully-abled people may not even realize how a disability or illness can impact the way you feel about your body, and in turn, the way you feel about or experience sex.

Second, I would love for people to consider that many who live with a disability or chronic illness may have an invisible illness — or an illness that you can’t see from the outside. If we walk around while keeping this in the back of our heads, I think we’d all be a lot more understanding of each other and we’d invest more in communicating with one another. Living with a disability or chronic illness provides you with a lot of mental and physical challenges that directly impact your sex life and relationships — whether or not you can see those challenges from the outside. It’s so important to talk about these experiences with your partner so that they can not only cater to your pleasure, but perhaps avoid circumstances that might otherwise make you uncomfortable. Maybe sometimes your illness or disability messes with your confidence. Maybe you’re not even feeling well enough to have sex. Maybe there’s a part of your body you would prefer not to have touched or a position that causes you pain. These are all things we should communicate to our partners. And who knows, maybe a new partner also has an invisible illness.

Honestly, I was really quiet about my illnesses in the past. At the time, I was ashamed and saw it as a point of vulnerability. And at the beginning of a relationship that can be really intimidating! But hiding my own experiences and struggles often resulted in a wall forming between my partners and I. I didn’t have much of a choice in telling my now fiancé about my illness — he was standing next to me when I was diagnosed only a month into us dating! That initial jump quickly threw us into a very communicative relationship and I am so thankful for that.

I am happily engaged to my partner who really gave me hope in forming relationships with an illness. The number one thing a good partner can do is communicate. Whether it’s simply listening to whatever ailments your partner is struggling with or what things your partner has discovered they like or don’t like as a result of their illness, it’s important to talk. Talking about sex can only bring honesty and genuinely satisfactory experiences.

The only way we can break the stigma of living with disabilities or chronic illness is if we share our own experiences, and truly listen and empathize with others.

Read the full piece and the rest of the series at dameproducts.com

Losing Bourdain

I was a freshman journalism student when I met Anthony Bourdain. After reading all of his books and seeing each show at least twice, I cancelled a weekend away with friends to splurge on last-minute tickets to see him speak. Although most of Bourdain’s stories were familiar to me — I had watched every episode of “No Reservations” — it was beyond worth it.

Following the event, I finagled my way into the VIP meet and greet just so Bourdain would sign my first travel journal. He was kind enough to humor my jittery, 18-year-old self with a brief conversation and a scribble in my notebook. Bourdain sweetly posed for a picture with my dweeby face peeking over his shoulder.

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I quickly told him about growing up with an American mother and Czechoslovak father, who instilled a passion for travel and food. I explained that my love for his show and approach to culture stems from the lessons my parents taught me. Essentially, if someone makes you food — no matter the appearance or ingredients — you eat it with the same respect and admiration as if your own grandmother set the plate in front of you. You should probably even take seconds. I’ve always strived to embrace traveling and storytelling in that way.

When I left the event, I immediately called my mom. I was on fire. The whole world seemed so open and I desperately wanted to dive in. I continued to pursue my career in journalism, high off of that one encounter that triggered my bright-eyed and bushy-tailed demeanor.

But just as my jaded mentors predicted, that sparkle faded. The weight of the world just gets heavier. The hopelessness from pouring your soul into telling the stories you were so honored to recount only to fall flat, has been destructive. I would be lying if I said I hadn’t faced several existential crises over the years.

Many of us saw Bourdain as an idol — and perhaps that was our biggest mistake. His death so harshly reminds us that fame is not impervious to pain or sadness. We frequently omit this reality. We focus on mirroring our heroes’ success instead of recognizing the human that created it.

Bourdain embraced and uncovered human imperfections whether it be by talking about his own struggle with addiction or listening to the conflicts of others. He worked to humanize and empathize with people from every corner of the world by sharing their most vulnerable moments with them  at the table. Bourdain appeared fearless. He was a warrior for many by mainstreaming travel and acceptance rather than tolerance.

The announcement of his death will ring in my ears for a while. It will remind me to take my own mental health more seriously. No more skipping therapy appointments because I’m too busy. No more hiding my pain in fear of judgement. We’ll honor Bourdain by living our lives with fervor and empathy for those around us.

Hug your loved ones. Call your therapist. Take your meds. Drink that glass of wine and slurp those noodles. RIP, Tony. You are missed.

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