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 bedridden. 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.
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 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 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 hyperaware 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 my 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 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 lying 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 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 toward me, but there’s no negative impact because of it.
Has having a disability impacted your dating life at all?
Woman A: I’ve been with my partner since we were 17, so I kind of missed the decade of awkwardness that comes with dating and disability. But I hear it’s a motherfucker. As far as dealing with illness in a long-term relationship, it impacts your self-esteem — does he really want to stay with me? Does he feel sorry for me? Does he want out? It adds a whole new level of commitment and there will always be something bubbling underneath wondering whether or not this is all “fair” to your partner.
Woman B: I’m probably a little too defensive. I don’t give much away at the beginning and play my cards too close to my chest. I think I have this fear that they’ll suddenly panic about my disability and leave me, so I tend to act a little too indifferent — and that has come at a cost. I’ve noticed the biggest difference in online dating. I think without seeing me in person, guys only see the wheelchair and my disability online, and they want to look after me. Eurgh.
Woman C: I am still learning how to navigate those first-date conversations with an invisible disability. It’s not my partner(s)’ responsibility to completely understand my disability or to feel responsible for my health, but there has to be an additional trust and communication when it comes to sex. I often think of my disability as a filter: If you can’t handle having conversations about my body, then you don’t deserve to experience it.
Woman D: My last relationship ended five years ago, and one of the reasons was my lack of interest in sex and inability to have penetrative sex. Dating is incredibly difficult. I find it hard to leave the home because of pain so I don’t get many chances to socialize with my friends, let alone date. Going out for a meal or drink would be difficult because of the anorexia.
Woman E: In some ways, yes. I was with the father of my child for 14 years, during which time I was diagnosed with MS. He was supportive physically, helping with shopping and housework, but he never once asked me how I was feeling or about my fears for the future. When we separated, one of the things he said to me was, “If you end up in a wheelchair, I’m not sure I’d be able to cope.” Well, hello? (1) I may never end up in a wheelchair anyway and (2) how do you think I might feel about that? What he said was more hurtful than sleeping with another woman. It took me a while to love myself again, enough to go out and date. But I’m now with a wonderful guy who has his own disabilities, so there’s a mutual understanding of each other’s needs.
What are the biggest misconceptions you’ve encountered when it comes to women with disabilities and sex?
Woman A: For me, it’s probably the opposite of what you’re expecting. I get a lot of confusion over the fact that I don’t have sex as often as it seems like I could. My friends do see me as a healthy, sexual person. They don’t understand that I may look fine, but I’m constantly struggling to keep up my strength and dividing up how much energy I have. Sex doesn’t always make it to the top of the list.
Woman B: That we don’t have desires, that we don’t get aroused, that we’re not sexual beings, that we piss and shit the bed (ewww, no), that if you can’t move your body, you mustn’t be able to feel touch either (incorrect, motor and sensor nerves are totally different), that all disabilities are the same, and that we must be desperate so will lower our standards and shag any old gobshite.
Woman C: The biggest misconceptions I’ve encountered include the assumption that women with disabilities can’t or don’t want to have sex. It’s often hard for non-disabled people to think beyond our (boring) ideas of heteronormative sex or “see beyond the disability.”
Woman D: That they aren’t interested.
Woman E: I personally haven’t come across any, but I’ve heard of people being told they can’t have sex with a disability. Well, that’s rubbish.
Do you feel like your disability has impacted your sexuality or relationships in a positive way?
Woman A: I would say that all the changes of a chronic disease — the symptoms, the unpredictability, the financial strain, the hospitalization, the fear of having a progressive disease — it’s made the communication in our relationship much stronger. We have to work through these things, so when unrelated trouble comes up, we’re probably more equipped than the average couple to face it.
Woman B: It’s a useful bastard filter. Most shallow, image-obsessed, pretentious jerks are going to avoid a disabled woman as we’re not seen as arm candy, which saves me [the time of] weeding them out. My sexual encounters, whether short-term or long-term, have tended to be with open-minded, forward-thinking men. Some of them have had a degree of emotional intelligence but not all — it’s not a 100 percent failsafe filter!
Woman C: It has definitely impacted my relationship with myself, my body, and with others in a positive way! This necessary self-awareness because of my disability gives me some sexy confidence to explore with others. It challenges my ideas of vulnerability and ultimately leads to having a lot of fun.
Woman D: It does mean that a lot of idiots are ruled out because they wouldn’t even consider dating a disabled person. By the point of any sexual activity, I will have to know the person really well, which reduces sexual mistakes.
Woman E: Definitely. I never let the fact I have MS get in the way, so we’re always finding ways to empower each other.
If you could tell Cosmo readers one thing about what it’s like to be a woman with a disability, what would it be?
Woman A: Be grateful for every inch of energy you have. Never take a spike in libido for granted and make sure you protect yourself so you don’t end up with a communicable chronic illness. Because that would really suck.
Woman B: It’s no different from being a woman without a disability. We lust, we feel, we desire. We just look a little different and have to be a little bit bolder to get people to forget about the disability. So stop staring and judging. It’s not exactly sisterly, is it?
Woman C: We’re not helpless. We are women and we are disabled — create space for all our identities.
Woman D: Talk to the woman. Everyone is different, so don’t make assumptions. One person may have a really active sex life; another person may struggle. And don’t limit what you call “sex.” It doesn’t just have to be penetration. Be creative and adventurous!
Woman E: You are still you and you can do anything you want to, as long as you put your mind to it.