Discovering Sexual Wellness and Intimacy as a Woman with SMA

“So, Katie, how’s your sex life going? Any concerns there?” 

With weak neck muscles, I craned my neck sideways and forward in search of eye contact with my gynecologist. His head and bow tie floated above the peak of my knee cap as cold stirrups rigidly cradled my feet. To ensure my legs remain firmly in frog-leg position and prevent any unpredictable flopping motion, my pelvic exams involve additional people standing next to each of my thighs providing guided support.

With a congregation around my body’s most intimate sector, the resulting spectacle feels like a circus tent pitched to exhibit my feminine nether region. My women’s wellness visits are a stark reminder of how precious dignity is to me within the setting of my SMA, and my healthcare team strives to boost comfort in a most uncomfortable situation.

“Um, it’s going really well, I think,” I softly mumbled in response. My gynecologist nodded and continued my exam, likely not noticing that I had been taken by surprise. He asked without a shred of scrutiny, and with the same degree of calming nonchalance one might convey when asking how the skies look out there and whether or not they should grab an umbrella before going out to lunch. 

In the quiet shuffle of the circus intermission, I thought to myself, “You see me. You see me as a woman first, disability second.”

My gynecologist has since become an integral part of my care team for over 10 years. Some of my feminine health issues have been complex in relation to my SMA. His open-minded approach to my care has helped me to understand how to navigate my sexuality alongside my SMA. Because he treats me as a woman who happens to cope with a challenging neuromuscular disease, I’ve always felt like I could ask any questions I need to, with answers yielding an honest mixture of science and compassion. 

We each decide where we want our disability to rank within the scenery of life. Some of us promptly place it in the foreground, while others tuck it away in the back. I like to be seen as a person first. If I loosen my grip on that identity, I flirt with forfeiting my place in line at the ticket booth for “Experiencing All Most Extraordinary & Wondrous Things” in this beautiful life. My rightful place in line as an equal person.

Receptive, approachable healthcare providers are only one component of the entire landscape of sexuality. Having a trustworthy and uplifting partner is also vital to sexual health.

More than a handful of times, some particularly bold person has asked me, “Can you have sex?” I’d often wonder if they were asking if I can physically participate in sex or if I can find someone who is willing to look beyond my disability.

When I began exploring intimate relationships, dating and sex were awkward because, well, it’s simply awkward to get to know another human on that level. I acknowledged that my wheelchair would be the focal point in the eyes of some people, but I knew there would be others who didn’t readily see it. Or, maybe they saw it, but it was more like a neat accessory than a deal-breaker. I’ve always believed that some people connect with one another on a soul-to-soul level. When that happens, physical attributes tend to fade away.

Yet, sex itself is very physical. Because of the way my SMA affects various parts of my body, there are logistics involved. Intimate moments with my partner need to involve open communication about what movements work well for my body, and what movements are not so ideal. It requires honest collaboration between us, with each other’s best interests at heart. It calls for creativity, tweaks, and adjustments.

My explanation sounds like a haphazard plan sketched across a jumbo-size dusty chalkboard, outlining all possible acrobatic routines. It’s nothing like that. When the chemistry is right, it ignites a spark of intimacy that flows around barriers. It all falls into place.

I’d be remiss if I didn’t mention the power of touch. I’ve learned never to underestimate how small yet tender expressions of affection construct the deeply authentic roots of a healthy relationship.

Dialogue of sexual wellness is empowering and contributes to overall health. It’s an important topic within the SMA community. In a former season of my life, I might’ve been less comfortable discussing sexuality and how it’s intertwined with my SMA.

Sex, relationships, and intimacy haven’t always been calm bodies of water to voyage along. Waves of difficult feelings sometimes rock the boat — feelings of inadequacy, self-consciousness, and body negativity — and I’ve had to learn how to work through it by harnessing the contrary: thinking positively about myself and acknowledging all of the good that I can offer. 

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.