“Words are not meant to stir the air only: they are capable of moving greater things.” – Natsume Sōseki, novelist

The illness that I live with is invisible.

It permeates my body through my nervous system and affects every single part of my existence: my time, my energy, my rest, my relationships, my work, my clarity, my mental health, my happiness. My words. My tears.

My experience of the world as a whole and, some of the time, the way the world views me.

All images by: Chloe Sargeant (author)

I have an illness called fibromyalgia, and while there is little known about the condition, doctors currently believe it means my nervous system malfunctions and permanently sends incorrect messages to my brain telling me I am in pain.

This means I feel relentless, widespread pain of varying severity across my body, and have bouts of fatigue that can be so severe I am left bedridden for days.

I also experience a veritable horror show of other symptoms that pirouette around my body on an invisible roster: nausea, headaches, migraines, bladder issues, chest pains, cognitive and focus issues, memory lapses, numbness, dizziness, fogginess, tremors, menstruation issues, and plenty of comorbid mental health conditions.

I have been chronically ill for well over a decade now, but I’ve only had my diagnosis for around three years – largely due to the medical system’s lack of interest in, and knowledge of, chronic illnesses.

It took many, many years of fighting with doctors to finally be taken seriously, to be educated on why my body was failing me, and to be officially diagnosed.

I was drafted into a war that my body never saw coming, and finally receiving my diagnosis – my victory – was bittersweet. I have had to move mountains to be a sick person, to identify as ‘disabled’.

Long before my body began to change my life for me, I developed a love for words, which eventually led me to a career in writing.

I love language; I love everything about it. I love that it changes, that it evolves across continents in different ways.

I love that it can be loving and that it can hurt. I love that it can erase hurt. I love that with just a few letters arranged in a particular way, I can tell someone who I am and what is important to me.

I love that I can express identity, my sexuality, my loves, my qualms, my innermost secrets, my pride. I love that at the age of fourteen, I was able to say that I was bisexual. I was able to tell the world who I was and how I loved people with a single word.

And now at the age of thirty, I love that I confidently say, “I am disabled and bisexual.”

‘Disabled’ and ‘bisexual’ are words that mean so many things to me: they tell stories of battles that I’ve lost, ones I’ve picked myself back up from, ones I’ve triumphed in – battles within myself, and with societal expectations.

I struggled for a long time as a teenager, deciding how and if I should come out as bisexual.

And I struggled all over again coming out as disabled: it was so deeply entrenched in me that I could not use the ‘d’ word, because I was ignorant about what disability was and what it can actually look like. It took nearly a decade of pain and struggle to acknowledge that dynamic disability is valid, and that I am a disabled woman.

Despite being outspoken about my sexuality and chronic illness, people don’t seem to like using the words that I have chosen for myself, the ones I display so proudly.

I continue to be called an ally. An advocate for disabled people, a supporter of the LGBTQIA+ community, an ally to the causes.

‘Ally’ isn’t a dirty word – it’s just not my word. I’m not an ally to disabled people, I am a disabled person. I don’t feel insulted being called an ally – I feel invalidated, dejected. Rejected. I feel suffocated back into the warm blackness of depression.

It pierces me, being told over and over, even by people within the communities themselves, that I am once again an outsider looking in, a stranger to a family I had loved, and one I thought had loved me back.

I have felt a similar pain before, as a queer woman. Myths about bisexuality, questions about its validity – and even its very existence – have led to many believing it is a marker of a bad queer, or not a queer at all.

I have experienced people in my community telling me I simply need to choose: men or women – you’re either in or out kid, pick a side.

I have had women leave our first date upon hearing I am bisexual. I have been made viciously, unquestionably unwelcome at queer events. I have stayed home from Mardi Gras and cried.

Always an ally, never a valued member of the community.

These sorts of experiences, common to many bisexual people, feed into imposter syndrome, and this is something I now also confront with invisible illness. My disability and my queerness are both invisible to the naked eye, too murky to be easily defined – so I remain in the grey areas.

Am I even allowed to use the words I chose so carefully for myself?

If I am really part of a community, when do they welcome me with open arms and tell me I am finally here and I am safe and loved? If they don’t welcome me, was I really here at all?

Imposter syndrome is a nasty thing; it angrily seeps through you like sweaty fever dreams in the night, so hot you burn until you finally wake up, clammy and confused in cold, wet sheets.

Often used to describe the overwhelming feeling of inadequacy in one’s skills, accomplishments or career, imposter syndrome has been adopted to also describe not feeling welcome or recognised by a community one is a part of.

I have felt imposter syndrome bearing down heavily on me in queer spaces, making me feel as if I must wobble on a knife edge between gay and straight instead of just what I am: bisexual.

And I have experienced imposter syndrome with my chronic illness. I questioned whether I was just maybe overdramatising things, when I realised my body felt much the same way my elderly grandmother would describe hers: constantly tired and sore.

Maybe they were just symptoms of depression? Maybe I was losing my mind?

Eventually, I went to a doctor. All their tests showed I was in perfect health; I would go home second-guessing my brain again. But then it would get worse. So I’d go back. Then to another doctor.

Over the years, another, another, another. I was told that I was depressed:

“Just increase your medication dosage.”

Many doctors told me to change the type of antidepressants I took – I’ve now tried almost all of them. I was told that I simply had to gain weight, that I had to change my diet. Another told me to give up gluten. Another doctor. Another specialist. Another. Another. Another. Another. Another. Another. Another. Another. Another.

They say I’m being overdramatic. Too demanding. Hysterical.

“Are you doing this for attention? It’s all in your head.”

A Cry For Help, one doctor noted down on his sheet, when he thought I couldn’t see.

After being gaslit for so many years, my sadness and anger became shadows and I instead started to question my own sanity: Am I actually sick?

I eventually found a GP who listened, empathised, and helped me navigate the medical system so I could eventually receive a diagnosis.

Before I experienced it myself, I could never have imagined how difficult it is to simply access this system that is largely designed against us. Despite Australia having one of the best medical systems in the world, this system is created for short-term sickness.

If your sickness isn’t curable, then the system is stacked against you. The system sees you as a burden who is taking up too much of doctors’ time, taking up a hospital bed too often, taking too many welfare dollars – simply taking up too much space in the world.

The mistreatment I went through weighed heavily on my mind. I am white and middle class in a country with a government-subsidised medical system. If I experienced this as such a privileged person, then what must others with less privilege than I go through? It keeps me up at night.

So I became more and more engaged with disability activism, and increasing the visibility of those living with chronic illnesses, until eventually I dedicated myself to it in my professional life and personal life.

I have found love and a sense of welcome in my communities, and this is a gift I will always treasure deeply. But love from the kinder part of the community makes words like ‘ally’ from others sting sharper and burn the imposter syndrome deeper into my skin, a painful tattoo that reminds me that to some, I am and will always be an outsider.

It dims the warmth and precious kinship I am so grateful to have been blessed with by disabled and queer people over my years. It makes me forget what I know: that I am valid; there are open arms in my communities for me.

Sometimes, these feelings make it hard to remember that the beautiful words I have fiercely fought to clothe myself with are mine, and I can use them as I please. But this makes me more determined to be visible, and while I cannot be more ‘seen’, I can be more heard.

Too able-bodied to be disabled, too straight to be queer – always the ally, never the bride.

But I love and care for my communities deeply, and I refuse to stop being a loud, unapologetic, out and proud disabled bisexual person.

Words can make us hurt and heal, find fellowship and find ourselves. Our words are forged of our history: our kinship and our battles, our hurt and our healing.

My queerness and my disability may be invisible, but my words are not – they are my power and they will be heard.

“We have to do it because we can no longer stay invisible. We have to be visible. We should not be ashamed of who we are.” – Sylvia Rivera, civil rights activist

This article first appeared in Archer Magazine #16, the DISABILITIES issue.

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Chloe Sargeant is a Sydney-based writer, producer, illustrator, radiantly queer scallywag, noodle enthusiast, and one half of the Chronically Fully Sick podcast. She’s currently writing a book about living with fibromyalgia.