When a person mentions that they have an illness, our judgement often jumps to the conclusion that they are referring to the common cough, cold, or a fever. Those particular types of illnesses that our minds are familiar with. But imagine if that illness was one that people can’t see. Where the problems that the individual is experiencing with their body stops them from completing regular day-to-day tasks. What happens when they may look completely fine on the outside, but are criticised by everyone else because they are not believed?
According to the Invisible Disabilities Association, an invisible disability can be a physical, mental or neurological condition, that may restrict a person’s movement, senses, or activities that are invisible to the eye.
So, who is suffering? Most people would assume that the elderly are more than likely to deal with this kind of stress on their bodies. However, these illnesses do not care how old a person is, and can be just as severe for the young. According to the NHS, 14.3% of young people aged 18-25 live with chronic pain, whilst the Mental Health Foundation state that one in 10 experience mental health issues, in the UK.
Life for a young person can be exceedingly overwhelming. Growing up, big decisions have to made that determines their future. Where do you want to go? Who do you want to be? What do you want to do? But visualize living with an invisible illness and having to deal with the criticism, on top of the pressure that comes with those decisions.
Jessica Howard is a twenty-year-old film student from London. Outside of her studies, she is a content creator for YouTube, as well as a singer-songwriter and photographer. Her Instagram profile is filled with alluring images which showcase her chaotic London lifestyle. To the naked eye, Jess appears to be an active and happy individual, with a great social life. But behind closed doors, her ‘normal’ is not as it seems.
When she was just fourteen-years-old, Jessica was diagnosed with Chronic Fatigue Syndrome (CFS) – a long term condition that involves extreme tiredness and only affects 2% of young people in the UK. Life became harder for Jessica and, regrettably, things didn’t stop there. In April 2018, she was diagnosed with a second invisible illness, Fibromyalgia – a condition that causes pain all over her body.
So, what is life really like for Jessica and how has her illness affected her?
Unfortunately, seeking out for medical help doesn’t appear to come easy when living with an invisible condition. Some young people feel that they are not taken seriously or believed. In an article written by The Telegraph, one in 6 patients are misdiagnosed, with doctors mistaking up to 15% of the cases, due to quick judgment. Nevertheless, young people believe that there is an absence of general knowledge from GPs and Hospitals when enquiring about their condition.
Joshua Baker, 24, describes his experience with GPs and Hospitals ‘a lengthy old process’, in the lead up to his diagnosis. When he was 21-years-old, Josh was living independently as a student at Southampton University. He was extremely sporty and enjoyed the typical student night out. Then out of the blue, he noticed that his left leg looked unusually larger than his right. Just like Jessica, Josh found himself back and forth in the GPs office; before being told by a masseuse that he needed to get his leg examined urgently. Eventually, Josh received a diagnosis of Lymphoedema – a chronic swelling condition that develops due to built up fluid in the bodies tissues.
It is clear that there is an occurring issue regarding the inadequacy of knowledge and treatment offered to patients that suffer from these invisible disabilities. Even medical professionals working in the NHS have felt doubted by other doctors and have been left to their own accords when trying to request for help.
Una Lynch, 25, is a qualified nurse and was unfamiliar with invisible illnesses since the very beginning of her career. But everything suddenly changed when she discovered that she was suffering from chronic pain. At 23, she was diagnosed with Costochondritis – an inflammation in the chest, that causes pain and fatigue. Una doesn’t recall being educated on invisible illnesses and the fact that it can occur in younger people – which she realises must change. Now, she has begun to work alongside GPs, where she helps them understand such illnesses, from a professional and personal perspective.
The fact that GPs and other medical professionals are not being educated on these illnesses, is partly accountable for why young people such as Jess, Josh, and Una have all had a negative experience at some point in their journey. In an article written by The Telegraph, Dr. Kevin Clearly, the medical director of the NSPA says: “There are some illnesses, like flu, where the symptoms for a number of conditions are very similar, especially early on, so it is not always possible to make a diagnosis immediately.”
Understanding and accepting someones invisible illness is vital. However, it doesn’t always come around that easy for young people. Sometimes even the biggest support networks begin to question the truth or fail to understand. Sophie Ainsworth, the founder of Raiise charity, was 14 when she was diagnosed with Lupus. Despite the fact that she was constantly in hospital receiving intensive treatment, such as Chemotherapy, she encountered a number of issues with her school. After receiving comments from teachers, and having letters regarding her low attendance, sent to her home, Sophie became upset with how she was being treated. When she left school, she decided to set up a charity called Raiise. The organization aims to provide information packs to schools, where it informs members of staff on how they should approach and care for students that may be battling with invisible illnesses.
Whilst invisible illnesses can be physically demanding, for some young people the battle can be a mental challenge. Nikki Mattocks was only six-years-old when she first told her mother that she didn’t want to be alive. After being bullied in her school years, Nikki was only 14 when she was diagnosed with Recurring Depressive Disorder, Post-Traumatic Stress Disorder, and Borderline Personality disorder. Due to having many hospital appointments, Nikki occasionally attended hospital school, where she began to meet others her age, who were also battling with invisible illnesses. Sadly, Nikki’s condition left her feeling extremely shy and anxious, making it difficult to socialise with the other students. But she realised that it made her feel better, knowing that there are other people out there that she could relate to. Eventually, she realised that there wasn’t enough support out there for young people who battle with invisible illnesses, so she decided to start up a peer support group.
Overall, it’s important to be aware of those who may suffer from invisible illnesses. As a society, our assumptions of an individual tends to be influenced by their appearance. But, in reality, not everyone is as healthy, as they may appear to be on the outside. Remaining open-minded and realising that Invisible illnesses do exist in young people, is key. Think about their struggle. How they have to cope with their ‘new normal’, whilst watching everyone else, live.
It’s unclear what the future holds for invisible illnesses. But for now, it is important that sufferers use their voices, in the order to see change – and hopefully one day, that’s what they’ll get.