Living with an invisible illness
We use our senses to describe illness: you appear unwell, you feel hot, your cough sounds bad. But what occurs when the rest of the world cannot see the signs of your illness? Hannah Turner vividly portrays the daily struggle of living with an invisible illness and the expectations imposed by others. | Photo Credit: ©DDonson/peopleimages.com
Living with an invisible illness
Unveiling the burden of living with invisible illness
Many of the illnesses I suffer from carry the label "invisible illness" – unseen by the naked eye, they remain medical mysteries within the healthcare system. However, to their owner, invisible illnesses are rarely unseen. My chronic migraines come with an aura, my thighs tremble when I have to stand on the train, my stomach bloats, my ovary is missing, and stitches cover my knicker line. When I look at myself in the mirror, all I see is ongoing sickness.
The absence of external markers for my condition flattens the impact of my daily struggle. If you appear well, others assume you should be able to manage your life, work, socialize, and complete all the tasks that life demands. The constant juggling act that people with invisible conditions face remains hidden without visible signs of pain or sickness.
You might catch me at a celebration, but you won't see the day after – spent in a dark room, or the hours before – taking extra medications or napping during the car journey.
“Without visible signs of pain, sickness or struggle, others cannot see the constant juggling act asked of people who are living with an invisible illness.”
A diagnosis of my chronic invisible illness
At that moment, I can identify all the parts of me that are hurting, but the doctors remain unfazed, often assuming that I am not telling the truth. They focus on charts, blood tests, and results, but offer few answers. My last doctor suggested “learning to live with it,” citing the long road ahead of me. I can't help but wonder how differently things would unfold if I arrived with external markers of the pain I feel, bloodied and bruised.
The thesaurus offers 31 alternatives to replace the word ‘invisible’, and almost all of them carry negative connotations, particularly when paired with ‘illness’: disguised, hidden, covert, concealed, inappreciable, ulterior, ethereal, veiled, unapparent, unnoticeable… unreal.
I am not on a mission to erase invisibility from the collective language of sickness. The label 'invisible illness' homogenizes a diverse collection of illnesses that share little in common, almost becoming a diagnosis in itself, one that is gendered, accompanied by distrust, and assumed to be invented by the person suffering from it. To say ‘invisible’ is to say ‘less of’.
“I can name all the parts of me that are hurting at that moment, but the doctors remain unfazed and often assume that I am not telling the truth.”
Chronic illness and living with an invisible disability
When does chronic illness become disability? When does your life get forever impacted by poor health? When do you face discrimination based on your diminishing ability to meet society's expectations of a good life?
Talking about disability is sticky, fluid, and often undefinable. There is no guide handed to you on the day you leave a doctor's office with the knowledge that your condition won't improve. In fact, there is often little general conversation about 'disability': it is shrouded in shame, deficiency, and the belief that the label would only hold you back.
My own reluctance to identify as disabled, when diagnosed with my first illness, came from a potent mix of not feeling visibly sick enough to use the term and false promises from doctors (and the internet) that I would eventually recover.
We are raised to believe disability has a certain look: a person in a wheelchair, an injury acquired through an incident. The question 'What happened to you' can only be asked when something is visible: a wheelchair, a white cane, or a medical attachment. Without a body scarred by trauma or violence, there is little room for understanding the experience of disability.
Navigating 'how to talk about disability' remains a complex challenge, and the prevailing perceptions surrounding it often hinder open discussions about the reality faced by those with an invisible disability or less obvious disabilities.
“We are raised to believe disability has a certain look. Without a body scarred by trauma or violence, there is little room for understanding the occurrence of disability.”
Reimagining the notion of invisible illness
I caught a virus on a plane, woke up on holiday abroad with a sickness, and it never got better. It's hard to fathom, as I had to reimagine my idea of sickness too. Since falling ill at 21 and experiencing further decline at 25 and 26, I've been forced to confront the interior of myself falling apart while on the surface, to strangers, I appear unchanged.
Traditionally, we conceive of illness as a singular journey marked by physical indicators visible to outsiders. The path of illness splits into two directions. One leads to the end of life, with terminal diagnoses or fatal traumas like heart attacks or strokes. The other sets the course for recovery, involving treatments and perhaps rehabilitation, with the prospect of returning to a "normal" life.
During recovery, physical signs of improvement become evident: walking again, hair regrowth, and comments like, "You're looking better," even after the flu. As humans, we comprehend sickness most clearly through our eyes.
But I now see my own illnesses as a third path on this journey of sickness – a detour that circles back on itself, signposted only to me. There is no visible reminder on my body for others to see.
Consequently, I find myself repeatedly exposing my sickness, explaining, over a seemingly "routine" cup of coffee, that pain ravages through my bones and I've already taken my necessary medication for the day.
"Living with an invisible illness is a double-edged sword because people who do not live with it do not always understand it well enough to know how serious it can be."
Reimagining the notion of invisible illness
Invisibility doesn't just refer to the visible manifestation of an illness; it also alludes to how the disease silently crept up on my body, disguising its initial symptoms. It recalls the way doctors dismissed my condition as mere anxiety, stress, or something not worth worrying about – a form of medical gaslighting.
For a whole year, I endured unnamed symptoms, brushed off as depression or a lack of ambition. I vividly remember the first doctor who callously suggested that getting a job would magically make me better. Even after five years and numerous doctor visits, the memory of that initial humiliation still haunts me.
Living with these so-called invisible illnesses for so long has made me realize that invisibility, as an idea, only matters in terms of how others perceive me. Daily, I witness my sickness, with reminders scattered throughout my home: days-old dirty dishes, piles of unwashed clothes, and a windowsill full of pill packets. My environment bears this evidence, and so does my body, with burns and scars as constant reminders of my internal pain.
I know now that I am not responsible for showing people how sick I am. If someone, whether that be a doctor, a stranger or friend, were to listen instead of just look, they would hear what I mean when I say I am always unwell, always in pain, always seeking relief. Perhaps then those who are not on that perpetual journey of sickness would also see that illness is not only something so easily and rigidly defined by time.
Living with an invisible illness can be challenging, especially when people don't believe you're sick.
“Living with an invisible illness” is adapted from “Living with invisible illness”, published by the Wellcome Collection. It is republished here under a Creative Commons Attribution 4.0 International Licence
Hannah Turner
Hannah Turner (she/her), the author of "Living with an invisible illness," is a writer and journalist whose work focuses on disability and chronic illness, and the way they intersect with everyday life. Her work can be found in publications such as Refinery29, Cosmopolitan and Mashable. She is an editor for Bookish Magazine, a new online book space. She runs a monthly newsletter, Sunday Bookmarks, where she discusses reading habits, current affairs and the politics of being sick. Hannah is London born and now lives in Amsterdam with her partner.
