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.
Fatigue, pain, and spasms are my big problem, but I really try not to let it get in the way of anything I want to do. I have a high sex drive so I like to do it with my boyfriend as often as my body allows!How, if at all, has your disability affected the way you have sex?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.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.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. 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. Woman B: I am paraplegic due to a spinal cord injury. I've had depression on and off since I was 7, and anorexia for the last two years. How has your disability affected your relationship with your body, for better or for worse?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!