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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.Honestly guys, I'm simply paralyzed, I didn't have my vagina sewn shut!Woman C: When I was using a wheelchair, people most often assumed I was not sexually active, or I was fetishized by "wheelchasers." Even my doctors were hesitant to talk about my reproductive health or contraceptives when I "had so many other things to worry about." Woman D: I think people see me as a non-sexual being.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.Woman C: I have to be mindful of and respect my physical limitations so that I don't overdo it and pass out.
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.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.I've had lengthy conversations with men who are shocked that disabled people have the same sexual desires as them and have sex lives too.I recently spoke with a guy I was at school with and he confessed that he liked me at the time, but couldn't figure out how or if I could have sexual relationships.
Woman C: POTS (Postural Orthostatic Tachycardia Syndrome), a form of dysautonomia. Woman A: I've had my fair share of disfiguring surgical scars and my disease can mean fluctuating weight, but it also makes me appreciate all the things my body can still do.