How Being Chronically ill and Queer Intersect, or Why do I have to defend my existence?

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I recently started a Facebook Group called, Gluten Free Queers, as a way to honor the intersection of a gluten-free lifestyle with one’s sexuality and gender identity. To me, this is a branch of the myriad ways in which chronic illness and queerness intersect. I also put together a manuscript that includes many poems about the intersection of chronic illness and queerness. It is fair to say that I find this topic valid, important, and true to my life experiences; however, I have received negative feedback questioning whether this intersection even exists, which has been incredibly infuriating for me.

How dare you question whether I exist? I think to myself, knowing that whoever would question the intersectional nature of these issues probably wouldn’t understand that kind of reply or the origin of my anger and frustration.

For some reason the same people who question the relationship between being chronically ill and being queer have no trouble understanding the relationship between gender and chronic illness. They are no stranger to mostly men as doctors dismissing their pain or upholding the capitalistic/paternalistic pursuit of for-profit pharmaceuticals.

Then why is it so hard to understand that queer people in chronic pain have unique experiences of how these two struggles collide? My own chronic pain has reinvigorated self-doubt, shame, dissociation, and confusion, which I first intensely felt due to my growing sense of being queer in my late teens. I felt so overwhelmed and unable to process my sense of my body and self that I floated around on the ceiling, separated from myself so severely that I wasn’t sure what my own limbs felt like or where they were located in relationship to me. I would fall over for no reason. I would end up places and wonder how I got there. I lived disoriented, fragmented, and scared.

This fear was my first language for a sense of gender and sexuality that I had no other framework for. As I type this now, I am still trying to teach myself to unlearn this fear. I need to speak a new language for myself, one that does not rely on panic for representation. When I found out that I was chronically ill, kind of like being queer, I had known but repressed it for years. I had often wondered about this symptom or that, if there was something deeply wrong with me or if I was just being crazy. My chronic illness spoke the same language that I knew all too well: Fear. My chronic illness made me disconnect from my body so that I no longer recognized myself. This state of lacking self-recognition became a kind of safe haven, a closet that kept the language of fear from yelling at me. In the closet, fear spoke to me in digestible whispers.  I continued with my daily life working and spending time with others, as if nothing was destroying me from the inside out. I became irritable and pushed others away because I felt that they no longer understood me.

Some days I can’t tell the difference between pain that I have because queerness has remapped my body versus pain that I have because chronic illness has remapped my body. I will never be the same. That doesn’t mean that I am broken, but it doesn’t mean that others should project onto me how they think I should be “fixed,” forced to see somehow that bodies are not panic-driven, that language without words is not fear. I’m tired of people telling me that queerness and my gluten-free-chronic-pain-coping life style is somehow unrelated. Please, please, if you are one of those people or know one of those people, tell them to stop harassing me by denying my existence. Ableism is a form of discrimination against people with disabilities, including people on the chronic pain and chronic illness spectrum. If someone tells you that their experience with ableism and homophobia intersect, don’t tell them that it’s impossible to draw connections. Do listen with an open heart.

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About pennapril

feminist, activist, poet
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One Response to How Being Chronically ill and Queer Intersect, or Why do I have to defend my existence?

  1. rebekka says:

    Oh my gosh!!! This resonated with me so well…..! I´m a queer celiac. Both these identities are questioned by people on a regular basis.

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