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Woman E: I've got a love/hate relationship with my body. In my head, I can still do the things I used to "pre-MS" but my body just goes, nah, we're not doing that!
How, if at all, does your disability affect your sex drive?
In this week's Sex Talk Realness, spoke with five women about their experiences with sex, dating, and living with a body that doesn't always work the way you want it to. However, I'm aware that I'm very lucky to have the use of my body and to be in good health; to be physically independent is a priceless gift.
The symptoms range from mild dizziness and brain fog to completely debilitating autonomic nervous system dysfunction. Now, I have regained mobility through ongoing biofeedback treatment and can go throughout my average day with mild to moderate symptoms like increased heart rate and pain. I feel like I'm very aware of how fragile the body is. It also pushed me to seek advice from a high-risk ob-gyn — literally years before I'm planning on having children, just so I could get an idea of what pregnancy — or infertility — would look like for someone with my disease. I still worry that some of my essential medications might hurt a pregnancy. I was a teenager when I had my injury, so my body was in a state of change anyway.
As my pain worsened and I have become more limited, this isn't an option anymore. I am unable to do a lot of everyday things because of my pain, which I have a tendency to blame on my body.
I seem to see my body and my mind as separate entities.
My heart rate stays even and lower when I'm lying down, but my symptoms can vary day to day. Woman D: I have difficulty with penetration, which is linked to my pain. I also struggle with non-penetrative acts such as oral or mutual masturbation because my fingers are mostly unusable and my jaw dislocates.
Having sex would have to be done very carefully with a considerate partner who fully understands the issues of the Ehlers-Danlos. Woman E: There are certain positions I can't stay in for long (e.g. I can't be restrained by my ankles either as I get random spasms and cramps. Has your disability impacted the way other people respond to you as a sexual person at all? The only visible part of my disability is my port scar on my collarbone and unless you're looking for it, it's hard to spot.
But in truth, most women with disabilities experience the same desire for pleasure, love, and physical connection as any other woman. I'd rather not need to wear a catheter; it's not the most aesthetically pleasing device in the world! If I could have my stomach muscles back I'd be delighted — to have a toned stomach and better balance would be brilliant.Like every other woman, I feel desire and arousal; my responses are the same.I guess they depend largely on what my partner and I are doing at the time!Woman C: My disability definitely affects my sex drive and response. However, sex can also be a great stress and pain relief.Woman D: Depression has killed my sex drive, and anorexia means I haven't got the energy for or interest in sex. Woman E: It can very much depend on how my MS is behaving on a certain day.
Other areas are also heightened — if a man pays enough attention to my neck, that can induce orgasm. Usually I'm the first disabled woman a man has slept with so I have to make sure they're at ease with it all, though it is incredibly sexy when a man takes control and doesn't treat me like a crystal vase that will break on throw down.