“You don’t look sick?”: the reality of living with an invisible illness

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Invisible illness is an umbrella term used to describe chronic health conditions that are not easily identified by simply looking at someone. There are many common misconceptions about what it means to ‘be sick’, as if it’s something you have to prove. Many people believe that symptoms must consistently be obvious for them to exist. This idea that someone cannot enjoy their life without looking visibly in pain or tired is a problematic assumption. How someone physically appears to the world does not reflect their health. Anyone who suffers with an invisible illness will know that they can smile and laugh even through the most painful symptoms.

My journey with invisible illness is by no means a simple one. At the age of 9 years old, I was diagnosed with Primary Ciliary Dyskinesia (PCD) — a chronic respiratory condition that often meets blank expressions when I tell anyone about it. I experienced years of misdiagnosis and incorrect treatment before one doctor realised the severity of my condition. In an instant, my life changed and hospitals became my second home. As a child, it was a rather difficult concept to wrap my head around. I cared more that I had to miss a family holiday, rather than my diagnosis of an uncurable illness. I resented that I missed years of my childhood with hospital admissions. Countless numbers of intravenous antibiotics and major surgeries numbed my perception of pain.

Invisible illnesses can cause experiences of pain or fatigue that often go unrecognised

Chronic illnesses are often unpredictable — I remember revising for my A Levels from my hospital bed not long after an emergency admission. Though every day is different — some days my symptoms will glue me to my bed. My body constantly has to fight an invisible battle that it cannot win. Every day tasks can seem impossible. It’s not surprising that it’s difficult to stay motivated on days when simple activities take up all of my energy.

It’s important to address the connection between physical and emotional well-being. Invisible illnesses can cause experiences of pain or fatigue that often go unrecognised. Symptoms can often cause a lot of stress and worry, which can quickly spiral into a serious mental health issue. In my early adolescence, I became consumed by anxiety, which started the tedious process of seeking mental health treatment. I believe that much of the early trauma around painful medical procedures and lengthy hospital stays contributed to my anxiety.

At the age of 15 years old, I was diagnosed with obsessive compulsive disorder (OCD). I quickly became aware of the stigma and lack of understanding associated with this disorder. I have to emphasise that this illness is not an adjective. This illness is not something to describe your preference for a tidy bedroom or colour coordinated clothes. My OCD is difficult to describe, unlike my respiratory condition for which I can easily conjure up a definition. Mental illness is a scarily easy thing to hide and often goes unnoticed. Even close friends and family can be completely oblivious to their loved ones’ struggles.

My struggles are not a unique experience, many people live with invisible illness. I spoke with my friend who has experienced the misconceptions and stigma that are coupled with an autism spectrum disorder (ASD) diagnosis. It’s important to know that individuals with ASD are not incapable of empathy or of functioning in social situations.

My journey with invisible illness is by no means a simple one

There are many processes going on in the neurodivergent brain — such as, sensory overload and anxiety about things that others would not think twice about. Sometimes people use ASD as a joke or an insult, which is incredibly undermining. We all use humour to cope with stressful or traumatic experiences. However, some people do not realise the weight of their words when talking about other people’s problems. Laughing about a condition you know next to nothing about is belittling and patronising. Such ‘jokes’ contribute to stigma about ASD, as well as the generalised stigma regarding mental health.

You may be thinking, how can I help my friends or loved ones that suffer with invisible illness? It’s often difficult to know what to do but we don’t expect you to be a medical professional, simply be a friend. My friend with ASD told me that simply holding their hand is enough sometimes. We’re not asking to be pitied but we all need comfort and support. Take the time to learn about how the condition impacts your loved one. You don’t need to know everything and you certainly don’t need to be perfect. Ask questions. Be curious and be kind. Be mindful when your friends say they’re not feeling up to doing something. Show that you care and that you are willing to learn because that support will always be appreciated.

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