Women with disabilities are often portrayed either as fragile flowers or oversexed, needing to be protected from the world and from their own sex drive. But in truth, most women with disabilities experience the same desire for pleasure, love, and physical connection as any other woman. In this week's Sex Talk Realness, Cosmopolitan.com 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.
How old are you?
Woman A: Twenty-five.
Woman B: Thirty-nine.
Woman C: Twenty.
Woman D: Twenty-eight.
Woman E: Thirty-seven.
What disability do you have?
Woman A: Dysautonomia, which causes chronic fatigue, dehydration, fainting, and I also have an immune deficiency disease which means I have a greater susceptibility to infections and a harder time than normal fighting them off.
Woman B: I am paraplegic due to a spinal cord injury.
Woman C: POTS (Postural Orthostatic Tachycardia Syndrome), a form of dysautonomia. The symptoms range from mild dizziness and brain-fog to completely debilitating autonomic nervous system dysfunction. At my worst, I was completely bed-ridden. Now, I have regained mobility through on-going biofeedback treatment and can go throughout my average day with mild to moderate symptoms like increased heart rate and pain.
Woman D: Ehlers Danlos Syndrome (which causes physical pain and mobility difficulties), depression and anorexia.
Woman E: Multiple Sclerosis.
And how long have you had it for?
Woman A: I'm a lifer.
Woman B: Twenty-four years.
Woman C: Four years.
Woman D: I've had Ehlers Danlos all my life, but it got a lot worse when I was 23. I've had depression on and off since I was 7, and anorexia for the last two years.
Woman E: Ten years.
How has your disability affected your relationship with your body, for better or for worse?
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. I feel like I'm very aware of how fragile the body is. It's really the only one you've got. It also pushed me to seek advice from a high-risk OBGYN—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 worried about infertility a lot before that. I still worry that some of my essential medications might hurt a pregnancy.
Woman B: It has varied over the years. I was a teenager when I had my injury, so my body was in a state of change anyway. Most people assume not walking is the worst aspect of my disability but it's not really. I'd rather not need to wear a catheter, it's not the most aesthetically pleasing device in the world! I also wish my paraplegia was lower. If I could have my stomach muscles back I'd be delighted—to have a toned stomach and better balance would be brilliant. 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.
Woman C: Because of my specific disability, I have to be almost hyper-aware of my physical body and specifically my heart rate at all times.
Woman D: Obviously anorexia means I have a difficult relationship with my body. I have dipped into anorexic behavior in the past and eventually managed to pull myself out by focusing on how strong by body is and all the things I can do physically. As my pain worsened and I have become more limited, this isn't an option anymore. I am frustrated and angry at my body. 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.
Woman E: I've got a love/hate relationship with my body. I feel like it fails me sometimes. 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?
Woman A: Fatigue and GI issues are a large part of my disease, so it's difficult for me to have spontaneous sex and that can be a downer. My sex drive has been consistently low as my disease has progressed. Sometimes I have good weeks where I'm all about it—but the majority of the time I have to really focus to get in the mood. And it's definitely got nothing to do with the efforts of my partner.
Woman B: It doesn't affect my sex drive at all. I've always had a reasonably high sex drive, though as I was injured at 14 I didn't have any previous responses to compare it to other than masturbation. 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. Chronic pain and depression can kill my libido. 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. But the biggest issue is the physical pain.
Woman E: It can very much depend on how my MS is behaving on a certain day. 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. Especially sex. 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 that you have sex?
Woman A: He's got to do a lot of the work, but that's about it.
Woman B: My injury has altered the sensations. My clitoris is hyper sensitive which can be good and bad. Too much stimulation is uncomfortable, so contrary to many women, I get more pleasure from penetration. Other areas are also heightened—if a man pays enough attention to my neck that can induce orgasm. It has also made me a little bit more confident. 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. My heart rate stays even and lower when I'm laying down, but my symptoms can vary day to day. Taking breaks and staying hydrated is key!
Woman D: I have difficulty with penetration, which is linked to my pain. I have never managed penetrative sex. 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. No one night stands for me!
Woman E: There are certain positions I can't stay in for long (e.g. doggy style) because my legs give way. I can't be restrained by my ankles either as I get random spasms and cramps. But anything else goes.
Has your disability impacted the way that other people respond to you as a sexual person at all?
Woman A: No. 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. So I don't really get a lot of response on that front.
Woman B: I've only had positive sexual experiences, but I'm pretty choosy about who I get naked with. Any doubt in my mind and I move on. Sometimes I do wonder how my relationships would have been different had I been walking. 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. 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. It can be frustrating that everyone just sees you as a friend and it can feel like no one has considered finding you attractive. I think there is also an assumption that if you date someone with a disability you will become their carer. In reality I have carers and whilst a partner may do some aspects of care, I would want to maintain a high level of independence.
Woman E: My current boyfriend feels protective towards me, but there's no negative impact because of it.