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Low On Spoons But Full Of Pride: On Being Chronically Ill And Queer

Pride month is over, but the protest goes on. July marks Disability Pride Month, which is a globally recognised effort to celebrate the experiences of disabled people. This commemoration includes raising awareness, reclaiming the disabled identity and appreciating the joy that disabled people share with each other as a community.

A major social construct that disability activists seek to overthrow is ableism – the discrimination and social prejudice against people with disabilities, based on the belief that certain abilities are universal as well as desirable. Disability Pride Month is also a call to discuss the issue of ableism so that the world can become more inclusive and accessible to people of all abilities.

Disability Pride Month seeks to highlight various forms of disabilities including physical, learning, invisible and mental health conditions. Several of these conditions are also chronic illnesses.

What is a Chronic Illness?

A chronic illness is a long-term health condition that may not have a cure and includes conditions of the mind and the body. Generally these conditions are irreversible, cumulative and persistent. There are variations in the medico-legal definitions of chronic illness to qualify someone as eligible for long-term care insurance, disability allowance and other assistive aids. However, it is important to recognise nuances in how a chronic illness may manifest. Some individuals with chronic conditions may be able to access treatments as well as manage their symptoms and pain. Other conditions may get progressively worse over time. Some individuals may identify with being disabled because a significant portion of their functioning has been impacted. Others may not identify as disabled because they may be able to manage their conditions or simply may not identify with the term.

Perhaps one of the most digestible metaphors to imagine what it feels like to be chronically ill is that of the Spoon Theory by Christine Miserandino, who lives with lupus.  The theory explains how a chronically ill person gets only a limited number of spoons or energy units, which have to be planned and used wisely, lest they run out of energy or burnout. So on a particular day, if a chronically ill person is in a state where they have 7 spoons, they may try to allocate these spoons accordingly for different purposes, so as to be able to perform these activities efficiently or enjoyably and conserve their energy throughout the day. The number of spoons available to them could be more or less fixed or variable depending on their illness. To do something that requires more spoons, they might have to conserve spoons, making trade offs with other activities so as to be able to perform the desired or required ones. The analogy of the spoons helps provide a language to talk about the difficulties of managing a chronic illness, particularly with able-bodied people who may not understand why a simple task may require a lot of effort, particularly when a person may appear able on the outside. Chronically ill people around the world have identified with being “Spoonies”, a nickname for those living with chronic illness, having found respite in being able to communicate with themselves and people around them about managing their illness in their day to day life.

How is Being Queer like Being Chronically Ill?

Just like with being queer, a strict definition of being chronically ill results in marginalization and harms those who experience being queer or chronically ill as different from socially constructed norms of both identities. Crip theory explores the mechanisms through which heterosexuality and able-bodiedness are made normal and in the process also those that make being queer and disabled as “less than”,”deviant”,”inferior” and so on. Identifying common mechanisms of discrimination provides a space to witness how multiple oppressions bleed into each other. Being chronically ill also challenges the binary of able bodiedness, similar to how being queer challenges the binaries of sexuality and gender. With able bodiedness being attributed as normal and disabled as deviant, chronic illness questions the existence of both categories.

To provide support to someone that is most helpful, it is important to first understand them. Like the slogan goes, “Nothing for us, without us”. More on what it’s like to be queer and chronically ill from the lived experiences of queer chronically people themselves:

On Identity

Have you been able to find acceptance in your identity as someone who is queer and chronically ill? Could you tell us a little more about that journey?

“It took me almost fifteen years to accept my chronic illness. After fifteen years of gaslighting, denial and self-hatred, I have realised that I suffer from chronic fatigue and chronic pain. Acceptance doesn’t change the illness but it initiates communication with the self with the body and mind and encourages us to listen to the needs of our body. I’ve loved myself a bit more since the day I accepted my chronic illness. It was always there, and I always knew but it’s only now that I have put a label on it. I am a survivor of brain damage-induced hemiparesis. Fortunately I recovered fast enough but in the process my disability is almost invisible to people. Invisible disability is something disabled people struggle with a lot. They face years of invalidation. My chronic illness has been worse since puberty as gender dysphoria and Polycystic Ovarian Syndrome (PCOS) were added to the journey.” – Blair

“Acceptance as a chronically ill queer trans person has been difficult because sometimes even your close friends don’t understand how it takes a toll on you and how you can’t do the most basic of tasks. So it’s very difficult, because it’s rare to see someone be understanding or even knowledgeable about these things.

My journey as a chronically ill trans person began when I was diagnosed with Depression, Anxiety and OCD. And it just went downhill from there because I worked in a corporate space and I had the worst burnout. I quit my job in 2019 and am still recovering from the burnout. It’s been very difficult to do the most basic tasks like getting out of bed and eating on time. Even eating the food I like feels like a huge task. There’s always this sense of no energy in my body. There’s this feeling that I will just collapse. But recently I thought of something that made it feel okay to live as a chronically ill trans person. I thought of animals and how they just eat, sleep, reproduce and survive and it made me feel like it’s okay you know, if you are able to do a little to survive everyday. Because if I think of it any other way, it just becomes hard and I can’t deal with the fact that I’m living with this. Sometimes you can put all your energy into the big things and do that but the small things which are necessary for daily survival are very difficult.” -Rishi

“I have cerebral palsy and was diagnosed with Hodgkin’s lymphoma when I was 15, which is a type of blood cancer which is very curable. Mine happened to be particularly drug resistant, so I relapsed three times. Over the course of all that I came into a sort of understanding of owning my identity as having a disability. I do think that my queer identity was also very hard to accept, because initially I kept telling myself and every one else around me also kept telling me “Oh no, you’ve not dated anyone so maybe you think you’re asexual because you’ve not met the right person.” I thought that because I have a disability, I’m always going to be alone. People told me chemo drugs reduce your libido. But this is not a libido thing, it’s a psychological thing. The more comfortable I got with my own disability and my chronic illness, the more I got comfortable saying that I am asexual, because it’s who I am and it’s not just because of the cancer and the disability.” – C.D.

How would you compare the experiences of coming out as queer and as chronically ill?

“I’ve had some pretty big similarities in both instances of coming out. Specifically, I lost friends at both instances. My family has struggled with both of these aspects of me. I have experienced isolation both for being queer and as a result of my chronic illness. But it’s also been considerably different in that my family has been able to support me in my chronic illness with far less work than it has taken for them to start to accept my transness/queerness. In terms of community, it has been more difficult to find one when it comes to chronic illness.” – Ardra

“Like most queer people coming out, I see the path of coming out as a zig zag where with some people I am more comfortable revealing and expressing my identity as compared to others. Like everyone knows about my disability but not everyone knows about the lymphoma. On queerness, there are very few people who actually believe me about my asexuality, because the rest of them just tell me it’s internalized ableism. It’s really not. I don’t believe that because I’m disabled I’m unattractive. It’s not about me feeling unattractive, it’s about me not feeling attracted to anyone else. These are two very different things.” – C.D.

Calling out Ableism

What are some ways in which you experience internalised ableism?

“I’ve definitely come a long way in working on my internalised ableism with respect to my autoimmune disease and with my Attention deficit hyperactivity disorder (ADHD). I do still grapple with capitalist notions of productivity though. I have periods of time where I’m very low functioning and unable to work for money or perform basic aspects of living. My self-compassion is really tested during these times. I also experience a lot of guilt when it comes to keeping up with the plans I make with my friends. Over the years I’ve had to learn how to show up for my friends without literally showing up. In romantic relationships, I often feel that I am making things upsetting for my partners because I’m constantly ill. It’s like an emotional weight that I feel I’m burdening the relationship with.” – Ardra

“I think  I’ve put myself down in many situations because I often feel like I’m not good enough. So I take a step back as I think someone else will be better at something than me. I prefer to work in the background and let others take credit because that feels more acceptable than if my name is visible.” – Edrin

How do you experience ableism in your study environment /workspace?

“For my college, I studied at an institution that was inclusive. I also worked with them in a social service commitment for the visually impaired and realized that these students were not being assimilated into the social body. They were able to get admissions but few people would actually try to assimilate them and be friends with them. I didn’t have difficulty making friends because I was much more verbal and I was used to being different. Students who came from schools for the visually impaired or schools for the hearing impaired and had then joined a mainstream institution for the first time did not have an easy experience. I was also assimilated because I was doing very well academically, so no one could mess with me, which was very validating. However, if I was not doing well academically, I doubt I would have had any friends.

In my workspace, I have not told my colleagues, I have only told my boss. Because otherwise they might keep assisting me with everything and I’ll feel like I’m not earning my own money. The workspace has not needed to accommodate a lot for me, because I am so used to trying to behave like an able bodied person that I don’t put that pressure on anyone. I also want to change my job for better pay, since this is a not for profit space. But I don’t have any guarantee that if I join a new workspace, it would be a safe space or if I’d be hired as a token employee because of my disability. There’s always a part of me that evaluates whether I should stay in a workspace for the love and acceptance or move to a new one for more pay because I also need to be independent.” – CD

“I have experienced ableism in my workplace and my study environment. In my workplace, everyone was given unachievable targets and they beat themselves up, did bad work but somehow met the targets. I was never able to in my last 3 jobs, one in a cafe and then at two call centres. I haven’t been able to meet my targets and learn as fast or be as productive as other people because I would just get exhausted mentally and physically. They have unnatural expectations. They expect you to not take toilet breaks or even carry small assistive aids to work. I used to carry a stress ball to control my anxiety attacks or just ground myself, but we weren’t allowed to carry such things, or even our phones. It was difficult because they make you work until you drop dead. My friend has low B.P and he had to be taken home on a wheelchair because of overworking. There were times when I worked a night shift and I would sleep for one hour after work, give exams and sleep for one hour again and go to work because they would not give leaves. And it made me very sick but they would just say that that was how everyone does it.

My college was very unaccepting of my queerness. It is based in an area which is not very safe for trans people. I have been enrolled for four years doing my B.Com, but I’ve had to take year-drops because of mental health issues and pain. I’ve had breakdowns because of bullying. The college doesn’t care about disabled students. They do not allow students to use lifts. There are no ramps and they do not want to change anything. If you tell them about your depression they will respond saying “How at such a young age?” – Rishi

How may have being chronically ill affected your dating life?

“Being chronically ill hasn’t had any direct impact on my dating life apart from the fact that it gets tedious almost always. I am reluctant to go on dates, to meet new people, as it’s tiring. It’s tiring to find places, dress up, get out of the house, not to mention the anxiety that comes with all of it. Also virtual dates don’t really work for me. So my dating life is pretty much just texting and then moving on. Despite the struggle, I have met a few awesome people and dated them briefly. With regards to ableism in dating, I have faced a lot of lateral ableism and gaslighting in a long term relationship I was in. And there’s always the occasional ignorance or insensitivity from people for sure.” – Blair

In the Mirror

Would you say that identifying as both queer and chronically ill has brought its own unique challenges regarding body image?

“I think it did when I was younger and in college. I used to not feel very attractive and experienced some body image issues at that time. But I have worked on it in therapy. Initially I thought my asexuality was not asexuality, that it was body dysphoria. But then I realized no, that was just not me. I’m pretty content with my body until people tell me not to be. They look at me and question “What happened to you?” and then I start thinking accordingly. But I realize that this is my normal. I have lived like this my whole life. I don’t think I have internal body issues, it’s external. It’s like the world wants me to have body issues. Disability becomes so central to their perception of you that they can’t see beyond it.” – CD

“Being disabled and chronically ill causes you to see yourself through other people’s lenses. Having an “abnormal”gait, being “lethargic”, “weird”, “introverted”, and so on, is the image that I had about myself because that’s how people saw me. I wasn’t even aware of my body image issues, and have not done anything about it. As a queer person, I also face gender dysphoria and consequent body dysphoria. Despite all this I have had an approach of neutrality towards my body. Recently I read a trans person’s account of euphoria, in which they mentioned that gender dysphoria was the cause of their low physical and mental energy and that after transitioning, they felt active and energetic like never before. This gives us a perspective about how chronic illness is worse for queer and neurodivergent people as they lose a lot more spoons to the burnout and dysphoria as well.” – Blair

Life in Quarantine

How would you say that the pandemic has impacted you as someone who is queer and chronically ill?

“Wearing a mask and immunity are very prominent concerns for people with chronic illnesses and wearing a mask is something that people with cancer are asked to do when they are on treatment. So I used to wear a mask then and even now and I still hate it because it feels claustrophobic and I have weaker lungs, so I get out of breath faster. So stepping out of the house has been a big no no. I can count on my fingers, the number of times I’ve stepped out of the house since the first wave of the pandemic. I have not been allowed to go outside, neither by my parents nor my doctors.

But my experience as a queer person has not been affected much. I came out to myself only during the beginning of the pandemic. I came out to my therapist as well. So my being queer has not come to the fore. I’m sure of being asexual but I’m not engaged as much as with other queer people. Regardless, I would not be able to talk about this very openly because the first response that I get is invalidation because of my disability.” – CD

“The pandemic has affected me in various ways such as having to live in a transphobic, and misogynistic household which is very bad for my mental health. My anxiety has skyrocketed with seeing the news and seeing trans people suffer everyday because of hunger. Not having contact with the queer community, friends, people I can rely on and express myself has made me suppress how I feel in many ways. It’s been very depressing and I haven’t been myself.” – Rishi

Hope for a Better World

What are some ways you would like the world to be more accessible?

“I wish that it wasn’t looked down upon to be chronically ill. People tend to see mental illness and the queer community as some sort of stains on the society. They try to believe that if they ignore us, then we don’t exist. Even a simple thing such as being allowed to take leave in school if you’re mentally exhausted and not just when you have fever or some other visible hurt could help a lot. Better healthcare policies that cover mental health issues would help the general population understand that mentally ill people are not invisible and are very much present and need the same amount of care and attention as any other patients.” – Edrin

“I think some ways the world can be accessible is doing away with the capitalistic approach to everything in life. Productivity levels and working hours that are very much ableist. Even the exams don’t really measure how much you’ve learnt. Do away with the fast-paced environment that we live in, dog-eat-dog world, you know. However, that will need a cultural reset for the entire world.” – Rishi

“Some ways the world could be more accessible are having flexible work hours or  school hours and to optimise tasks and make them less tiring. Along with being a spoonie, I’m also neurodivergent and I seek ND-specific accommodations too like readability, content warnings, peaceful and less illuminated environments. Being neurodivergent subtracts the spoons even more, as the world is not very good at accommodating ND needs and that leads to meltdowns and fatigue. Focusing on these issues would really help improve accessibility. At last, I would just like to say that there are struggles, and there’s joy too. But I’m proud. Disabled and proud. Queer and proud.” – Blair

Global Trends in LGBT Rights During the Covid-19 Pandemic

I’m a “Spoonie.” Here’s What I Wish More People Knew About Chronic Illness

Raising awareness of all disabilities this July during Disability Pride Month

The SAGE Handbook of Global Sexualities

The Spoon Theory written by Christine Miserandino

Troubling Binaries, Boxes, and Spectrums: A Galactic Approach to Queerness and Crip-nes

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