When I think of illnesses that are invisible, three words come to mind; misunderstood, misrepresented and disregarded. Many people believe that if you do not carry crutches or even show any signs of physical deformity, you are perfectly healthy. However, this is far from the case for most people.
If you are ever struggling with everyday tasks that should be routine and simple without a second thought, imagine how hard those must be for someone who is living with an illness no one can see. Being questioned when using a disabled toilet and having people think you “don’t look ill” are two of the many insults unintentionally aimed at those with illnesses you can’t see, and this needs to change.
Fatigue, muscle pain, headaches and sleep problems are all physical symptoms of invisible illnesses and chronic conditions, not to mention the strenuous impact it can have on your mental health. Combine all these with medication, endless hospital trips and feelings of hopelessness whilst trying to live a normal life. That is the reality of an invisible illness
My twin sister is 20 and has lived with Crohn’s disease for three years now. Hearing the things people say, along with how they act towards her is shocking and has truly opened my eyes as to how hard it must be to live with an illness people cannot tell you have.
“Having Crohn’s disease has been the loneliest experience I’ve ever gone through,” my sister Rachel explains. “It’s the type of illness where unless you have it, you can’t begin to imagine what it feels like. I often feel like a bike without wheels or a car without fuel, I am still very much a person, however I am not fully intact, which leads to feelings of inadequacy.”
Living with someone with an invisible illness allows you to witness what they go through and for my Mum, she believes that “As a parent the only thing you want is for your child to be happy and healthy.” She adds, “She (my sister) has been victimised for using disabled toilets by strangers because she doesn’t have a visible condition. Even members of our immediate family do not fully understand what she goes through.”
Those with invisible illnesses often experience discrimination in many different forms, mostly due to a lack of understanding and awareness about these ‘hidden’ conditions. The BBC recently made a 15-minute documentary called Living with IBD: Ulcerative Colitis and Crohn’s Disease. The documentary shows the brutal reality of living with these invisible illnesses and focuses on how scientists are investigating the connection between our brains and our guts, as well as how this could help develop ground-breaking treatment.
In the documentary, Bryony Hopkins chats to those affected with IBD, including Made in Chelsea star Louise Thompson and Instagrammer, Rosie Campbell. Both influencers have had IBD for years and openly share their stories on social media. Amongst what they discuss, it is clear to see that many people are ignorant of these conditions and what people who suffer from them go through in day-to-day life.
Eloise Knapman is a 19-year-old student whose Mum has CFS, Chronic Fatigue Syndrome. Similarly to IBD, CFS is very much a misunderstood invisible illness. “My mum is pretty much house-bound but can still move around and look after herself. There’s so much more to CFS than just fatigue and I think people treat invisible illnesses differently to physical illnesses as there is not much awareness at all, therefore so many people don’t even know they exist” says Eloise.
According to Agency Central, 96% of illnesses are invisible, so let that statistic sink in for a minute. The website also states that of those people with a chronic invisible illness, 60% are between the ages of 18-64.
Invisible illnesses are not just made up of physical chronic conditions. They also include mental illnesses and according to Mind, 1 in 4 people experience a mental health problem every year in England. Additionally, 1 in 6 people experience a ‘common’ mental illness, such as anxiety or depression, a week.
This figure is shocking and confirms the need to raise more awareness about these conditions which are not seen. RJ Conti, aged 27 and a Director at Liberty Hoffman Studios, has never had a diagnosis for many chronic issues experienced throughout her life. “Without a diagnosis, everyone expects me to act like everyone else and be able to handle what everyone else handles.”
She adds, “People like evidence. People like to see something to know that it happened. If someone is limping, or has a cast on a limb, these all have physical evidence that shows in a person’s health. But those who suffer illnesses that do not show on the outside are seen as fake or lying. I wish I knew why. I can’t really understand why.”
There is a strong need for change about how people view those with invisible illnesses and in my opinion, documentaries such as Living with IBD: Ulcerative Colitis and Crohn’s Disease should be shown more in schools as part of our education system.
By talking more about these conditions, we are erasing negative stigmas and broadening people’s knowledge not just about the physical impact, but the mental one too. Doing this allows sufferers to feel more included in society and not feel so alone in their struggles. For so long, ignorance towards these conditions has caused so many issues, so let us do everything we can to learn more about them.
Invisible conditions are slowly gaining more awareness, however there is still a long way to go.
Words by Hannah Youds
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