Sexuality isn't reserved for the Able Bodied
by Chanti Thompson
When you have a chronic illness and disability, you become accustomed to dealing with other peoples unwanted pity. You're often viewed as a ‘poor thing’ rather than a sexual being, when in reality it's not a dichotomy. I am a woman living in a less able body and simultaneously a sexual being with desires. It's really not a difficult concept to grasp. The societal projection of people with chronic illnesses and/or disabilities and sex don't sit in the same conversation. This ableist notion that you are either a sexy sexual being or you're sick and disabled is actually disgusting and slightly ridiculous.
There are various symptoms associated with endometriosis that have impacted most of my day to day life including my intimate life. It took me some time to navigate living with an illness, but you have no choice but to adapt. I found that during the early stages of becoming ill I struggled with confidence and self-image for some time. My body changed visually and invisibly in ways beyond my control and surgeries left me with scars that I was self-conscious of. The pain culminated with the changes in my body left me feeling like I didn’t particularly want to be intimate with people.
Within the medical community sexuality is often overlooked at best and ignored at worst. Having a healthy sex life as women has often been viewed as unnecessary by medical professionals, as a privilege. Rather than something that everyone has the right to explore if they want to. The dated view of female sexual health is centred around fertility and reproduction, unfortunately this model is still used by many medical professionals. Over the past 8 years I have lost count of the amount of times the doctors have been preoccupied by whether I want to conceive children, at times it has seemed more important than the constant pain my body is in. This aligns with the wider misogynistic societal view of cis gender women existing as vessels for child rearing and the pleasure of men. Hence why medicines for erectile disfunction are widely available on prescription from the NHS, but menstrual products are not.
I recently met with my consultant (Dr Elizabeth Ball, MD, PhD, MRCOG) and this was the first time a doctor has talked to me as though I was a full person not just a body or body parts. She saw me as a whole person with desires. It was refreshing to have an honest and open dialogue with a doctor, in the past I have not always felt comfortable breaching the subject of my sex life despite having an illness that is known to give patients pelvic and vaginal pain. Especially as I have experienced homophobia from doctors in the past . Unfortunately, being a queer woman will sometimes affect the level of care you receive from doctors. This is quite worrying when applied to gynaecological care as this area of medicine is so intimate and often invasive. On another occasion I have also been asked aggressively by one registrar why I didn’t want an internal examination on that particular day. This interaction left me feeling very uncomfortable, when giving internal examinations we need to bear in mind that women may be in pain already or may have experienced rape or sexual trauma in the past. So it is vital to have these discussions with tact.
Pain during sex (dyspareuniais) is quite common in women with endometriosis and at times it has meant I would physically not be able to have sex despite having the desire to and being turned on. There are two factors that contribute to sex being painful for me, the first being endometriosis and the second being that I have a tilted uterus. Honest and open discussions between doctors and patients about their sex lives often do not take place. Both doctors and patients may be unsure how to begin this dialogue and may be embarrassed. To help alleviate some of the pain during sex associated with having a tilted uterus Dr Ball suggested a selection of sexual positions that I could try that may be less painful. This is the first time since my diagnosis that any doctor has offered any type of advice or even acknowledged that painful sex could have an effect on my sexual interactions with others.
Dealing with chronic pain and illness impacts your libido, not only through the physical pain the person goes through but also the psychological effects of living with constant pain and illness. People living with chronic illness often experience depression and anxiety which in itself often decreases a persons libido. The anxiety created by anticipating pain during sex is often off putting yourself and your partner may also be anxious about the idea of causing you more pain. As people having consenting sexual relationships communication is always essential, it is especially beneficial when one or both sexual partners experience pain. For myself being able to tell the person I am sleeping with when I am experiencing pain during intimacy has always been a crucial part of my interaction with that person. Casual sexual encounters are not something I can engage in as I feel that there needs to be a high level of trust and an open dialogue during sex in regards to pain. I am in committed relationship so at this point in my life that isn't an issues for me. However this is something that affects many people living with disabilities and long term illness, casual sex is something that is often complicated and sometimes not possible.
Sex and desire don't have to be tied to another person, having a fulfilling sex life with yourself is so important for me. It helped me learn to love my body and accept my body just the way it is, it also allowed me to work out what causes me more pain. Without self-pleasure I wouldn't be able to show my partner what feels good and doesn't hurt me. It has gotten rid of some of the anxiety that comes with anticipating pain during sex. Pain is especially heightened during penetration, this can be quite problematic within heterosexual relationships where culturally sex is centered around male pleasure and the penis. With heteronormative ideals being fed to us through media, formal education and often primary socialisation it’s easy to grow up thinking that as women and their sexuality exist for the male gaze and pleasure. As a queer woman of colour I had to go through process of unlearning a lot of these ideologies, some that I am still unlearning. For example, growing up we were socialised to think a particular body type was the ideal, mainstream media has fed us images of western beauty ideals for decades that for me are entirely unrelatable. They are also unrealistic, we are bombarded with these images of women that are supposed beauty and body ‘goals’, yet there is always a distinct lack of diversity within most beauty and fashion campaigns. They lack diversity in so many areas, we are still predominantly seeing able bodied thin white women in the media and that sends a distinct message about desirability. These images are also created with the male gaze in mind, projecting this image of women created within the ideals of male desire. As a queer woman this is extremely problematic because even as queer women we are pushed into this space of existing for male desire within popular culture. Lesbianism has been viewed for decades as something for male pleasure and voyuerism, which is ironic since its actually the opposite. Pornography is a prime example of how queer women are used for masculine gaze or pleasure. Most ‘lesbian’ pornography is produced and directed by straight men with their ideals and unrealistic fantasies of queer women existing for their desire. Add on top of that the unrealistic expectations of women and their sexual responses and what makes women feel good it not only breeds a culture which isn't positive for women, it also isn't positive for men either.
Despite the notions that popular culture attempts to impose upon us people living with illnesses and disabilities, we can also be sexual beings full of desire and sexuality. We are also not necessarily defined by the illness we live with. I desire intimacy, I desire closeness, I desire safety, I desire freedom of sexual expression. For me sex isn't always about the end goal i.e. having an orgasm. It’s about the pleasure and intimacy shared between myself and my partner. Sexual response, sexual desire and sexual satisfaction are not the same thing. You can have sexual desire and satisfaction without sexual response in the form of an orgasm. We are taught that once a man orgasms sex is complete and that is the main goal. This is also a result of the heteronormative and male focused model of sexuality that sex is defined by the male orgasm and that is the sign that the act of sex is finished.
My sex tip to myself: Communication and trust are key to a happy healthy sex life. That includes communicating with and trusting yourself.