A digital magazine on sexuality, based in the Global South: We are working towards cultivating safe, inclusive, and self-affirming spaces in which all individuals can express themselves without fear, judgement or shame
CategoriesDisability and Sexuality 2Voices

An invisible disability: My partner for life

Fifteen percent of the global population lives with a disability1and these are the recorded numbers only for officially recognized disabilities. There are thousands of others living with invisible disabilities that are not even recognized by the official healthcare systems in various countries. These include psychosocial disabilities.

People with disabilities (PWDs) are often subjected to infantilization by birth families. They are often assumed to be either asexual or hypersexual and are often objectified and/or fetishized in popular culture. Most PWDs are not considered ‘fit’ to have an active and healthy sexual life or to have children. Their sexual and reproductive health and rights (SRHR), especially that of women with disabilities, are often overlooked by families and/or partners, if any.

PWDs face sexual marginalisation by being denied access to affirming information around sexuality and even to the services that are easily accessible and available to others.

Invisible Disabilities can be defined as:

“In simple terms, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgments.”

The sexuality-related prejudices people have about PWDs are further compounded for people who live with a disability that is not visible, even though such conditions can also alter a person’s self-image, sexual experiences, and even the way they are perceived by others.

My Personal Journey

I live with one of the most common invisible disabilities and causes of chronic pain known as Fibromyalgia. Long before I received the diagnosis and some healthcare support for pain management here, in India, I now realise it had started affecting almost all aspects of my life, including my sexual life.

People who live with a disability are rarely considered sexual beings who deserve equal sexual rights and opportunities to express and experience their sexuality.

“… societal misconceptions of disabled bodies being non-normative, other, or deviant has somewhat shaped how the sexuality of disabled people has been constructed as problematic under the public gaze.”2

Chronic pain and all the other symptoms of an invisible disability also change your relationship with your own body, your self-image, and how they get perceived by your partner. Sometimes, the medicines prescribed for pain relief also cause a loss of libido, weight gain or loss, hair loss, and other such side effects that ultimately affect your sex life.

I was already a parent when I was diagnosed, and fibromyalgia not only increased the severity of my post-partum depression but also led to sex becoming a tiresome task, especially with my then partner who wasn’t aware and was largely uncooperative about the condition.

Things and positions that used to be easy and ‘normal’ to do for me became difficult, and would leave me so exhausted that all the joy I could associate with or derive from sex got lost. Adding insult to injury was the fact that nobody understood this: not my partner, not my friends, not my gynaecologist. They all invalidated this by saying things like, “Sex does become a task after a few years of marriage, why crib!” and “Don’t tell your husband this, just fake it (orgasm).”

On top of battling debilitating pain that nobody understood, and living with an invisible disability, I was told to not think about desire and fulfilling sexuality, to keep pretending that my condition changed nothing.

This traumatic period left deep dents on not just my sexual expression but my overall mental health. I began to believe that something was wrong with me, that my specific issues regarding sex were entirely my fault, and I stopped looking at myself in the mirror.

No support systems but a few

Famous disability rights activist from India Abha Khetarpal created a manual on Sexual and Reproductive Health and Rights of Women with Disabilities and probably, for the first time, the rights, challenges, and possible solutions for the hurdles in the way of all of us disabled women were discussed and put on paper in the Indian context.

A few other organisations like Rising Flame sometimes hold events and discussions about the intricate and intersectional relationship between sexuality and disability. But back when I was battling my illness without any resources, I had no support system at all. Not one doctor ever chose to answer my questions about what implications oral contraception would have on my condition, if any. Only a few partners were considerate enough to understand that I couldn’t be intimate with them on certain days because of a flare-up, or why just lightly brushing my cheek could also trigger myofascial pain for me.

Periods and ovulation also became particularly painful times of the month when my already existing pain would worsen and, while I would crave intimacy and human touch, it was denied to me because “who will put up with a ‘broken’ woman!”

In my peer group, I came across women who had it even worse: they had faced things such as forced sterilisation, forced marriage, abuse, and because they couldn’t conceive or experience pleasure during heteronormative penetrative sex, even intimate partner violence and marital rape.

My Healing Journey

I think I began to heal or let’s say, accept this ‘new’ me and these new desires when I started being vocal and open about my body and my ailments with my partners and in my circles. There were still many who would label this “classic attention-seeking behaviour” (whatever that means) but I stuck to my guns. If you want me then it has to be all of me, with my invisible disability and my chronic pain, without pity or stigma.

My work around mental health and sexual wellness ensured that I had no fear or shame about my sexuality or my disability, but there was always the fear of losing a partner due to it. What if I was not enough? What if I didn’t meet his needs? Those were thoughts that would often bother me.

But being on the same page with the current partner, making them aware about the nature of my pain, brain fog, and triggers eased things a lot. In fact, it helped me and my partner explore newer ways, positions, and acts to connect with, sexually, that were less stressful for me.

The journey is on-going to build a world where aspects of identity like gender and disability don’t intersect to oppress but to create newer intersectional spaces that are more welcoming of all kinds of diversities.

 

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[1]  http://www.who.int/disabilities/world_report/2011/report 

[2] https://www.frontiersin.org/articles/10.3389/feduc.2017.00046/full

Cover Image: Pixabay

Article written by:

Pooja Priyamvada is an author, columnist, professional translator and Content and Social Media consultant. She is also a bi-lingual blogger. Both her blogs have been awarded several times consecutively at the Orange Flower Awards and she has been associated with reputed national and international online addresses. Her translation titled A Night in the Hills, a collection of short stories by Manav Kaul has been published by Westland Books recently. Her book Mental Health: A Primer is available on Amazon Kindle. Her areas of work are mental health, sexual wellness, gender and marginalization, and her favorite mediums remain poetry and theatre.

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