the misconceptions surrounding invisible illness

By Millie Smith

Invisible illnesses can be easy to forget if you don’t have one, they are invisible after all. However, it’s hard to forget when you’re living with one.

An invisible illness is anything not visible; anything from allergies and mental health issues to chronic fatigue syndrome and fibromyalgia. It is believed that around 70% of all disabilities in the UK are invisible, so this is far more common than you may think (Psychreg). Just because someone looks well from the outside, doesn’t always mean they feel well under the surface.

Invisible illnesses are usually linked to chronic illnesses (which are long term health conditions, usually without a cure) but this is not always the case. I was diagnosed with a chronic AND invisible illness at 20, and whilst my diagnosis did not come as a shock, it did leave me feeling a weird way.

Having been diagnosed with Fibromyalgia at 20, I initially felt relieved. I felt heard and I felt listened to, my pain was real and a medical professional understood me. I also felt upset and maybe a little disappointed, getting a diagnosis confirmed to me that my pain wasn’t going to go anywhere and whilst medication can be used to try and ease my symptoms, I will live with this condition for the rest of my life and that realisation can take some getting used to. Fibromyalgia affects roughly 2 million people in the UK and thought to be far more as the condition is difficult to diagnose (NRS).

"It is believed that 70% of all disabilities in the UK are invisible."

There are some common misconceptions and myths surrounding invisible illnesses that I wanted to ‘debunk’. It can be hard to understand something you don’t live with, but education surrounding invisible illnesses can help everyone learn how to help those living with invisible illnesses.

Firstly, there is the common misconception that invisible illnesses ‘aren’t that bad’ or that they are ‘made up’ simply because they are not visible. It can be hard to understand how someone can be living with a difficult and often painful illness when they look well and happy from the outside. This is typically because people with invisible illnesses don’t wish to burden you with their symptoms, or that they are trying to be positive and ignore their symptoms. If someone shares that they are struggling, believe them.

Secondly, it is a myth that people with invisible illnesses don’t want to hang out with you. We really do want to spend time with you but we are usually limited by our condition. So, if we are hesitant to make plans, or cancel at the last minute, it is not because we don’t want to be around you, but actually due to our body’s limitations.

Thirdly, there is no such thing as ‘too young’. It can be problematic to tell someone that they are too young to have a certain condition. Arthritis, for example, whilst more common in older people, can be diagnosed in young people. Typically, illness in young people is short-lived and curable, but with chronic conditions this is not the case. Telling someone they are too young to have a certain illness can make their condition seem frivolous, and is often hurtful.

There are many misunderstandings surrounding invisible and chronic illnesses; they have often been considered taboo and people are often shy to ask questions if they’re not sure. Most of the time, those suffering with an invisible illness are not looking for your sympathy, but for your understanding. Listen to understand and to learn how you can help.