Behind the Curtain of Invisible Illnesses

Alice reveals what it's really like to have an invisible illness.

Alice Goode

Invisible illnesses – who’s heard of them and what actually are they? Other names used for such disabilities are chronic conditions/illnesses or autoimmune disorders. Whilst they have slightly different meanings, they fall under the same classification of conditions that cause similar symptoms such as chronic pain and fatigue and are often undetectable when one solely looks at the person diagnosed. Someone with an invisible illness looks like anybody else, but underneath that appearance they are struggling with constant excruciating pain, exhaustion and a multitude of other equally unpleasant symptoms. Hence invisible illnesses are one of the most underrepresented forms of disability. 

The common image and idea of those with disabilities is that of wheelchair users. However, only 8% of disabled people use wheelchairs. The majority of impairments aren’t visible. So why does nobody talk about them, and why are they so misunderstood? Well, first of all people with the same invisible illness could all present with slightly different symptoms, meaning it is difficult for doctors to definitively diagnose such illnesses. The process for getting a diagnosis can often take up to 10 years (or more). Why? Because doctors perform test after test in order to rule out anything else before diagnosing an invisible illness. Some of these tests aren’t the most reliable, giving false negatives and are only reconsidered years later. Furthermore, there are a whole host of prejudices surrounding invisible illnesses which hinder diagnosis. For example, age, gender and ethnicity all play a part in how quickly you get diagnosed, if at all. Many chronic illnesses weren’t deemed to exist as there were no tests for them and therefore weren’t provable. For example, fibromyalgia was only considered to be an invisible illness 5 years ago due to the fact that there was no definitive test for it, and without this empirical proof they refused to believe in its existence. Only recently have these damaging and archaic opinions began to change. 

When I first started having issues with my health, I was 10, walking with a limp and in constant pain. This was in 2009. Back then fibromyalgia (which I would later be diagnosed with earlier this year) was only thought to affect women in their 40s. For a young and otherwise healthy little girl there was no chance I was going to be diagnosed correctly. Consequently, I spent the next 11 years of my life in and out of hospital. I have had more physiotherapy sessions than I can count, hydrotherapy, cognitive behaviour therapy, psychotherapy, crutches, splints and orthotics. There was never a point where I didn’t have doctors’ appointments or didn’t have to control how much activity I did. My whole life revolved around my health and mobility. 

So, what does this mean? Well it’s like having a full-time job – but you don’t get paid and have no idea what you’re doing. I was constantly off PE during school and instead sat in the library on my own doing homework. I’ve never gone on a girly shopping weekend or a spontaneous trip into London. Every activity, action and movement has to be carefully considered. Chronic illnesses are likened to having a phone that operates at 20% charge. You can either go out and limit your activity, constantly worried about it dying, or you can stay home and charge it whenever, but you’re tied to your room. I prioritise things I have to do like go to class and work, and then see what energy I have left and what my pain levels are like and decide whether to do something fun whilst also making sure I won’t be bedridden tomorrow. It’s a constant struggle and worry. On top of this most invisible illnesses like to add a little extra spice and be unpredictable. Monday can be a good day, Tuesday can be a flare up – it’s a struggle to brush your teeth or change your pjs. Invisible illnesses aren’t linear or stable. You find yourself cancelling coffee with a friend, taking weeks to reply to emails, and being what’s considered ‘flaky’, when actually you’re working your hardest to do everything whilst fighting a body that wants to collapse into a heap. This unreliableness often brings frustration and sadness to those with invisible illnesses as it becomes hard for others to understand your increased absence and lack of sparkly energy. Your life can often become smaller.

Because of this very nature of invisible illnesses many people are often diagnosed with anxiety and depression. Dealing with all elements of chronic illnesses and coming to terms with the word ‘disability’ is extremely difficult, and unfortunately there isn’t a manual that makes things easier. I have felt everything from anger, to fear, to grief and deep sadness because of my chronic illness. I now permanently use (pink) crutches, have a blue badge and am classified as disabled. But the most important thing to remember is that words like disabled, invisible/chronic illness are not bad words. You are not lesser or faulty or broken because of your illness. Those with invisible illnesses are often stronger than you know, have the resilience of a lion and a ceaseless kindness in them. So, if you know anyone who has been diagnosed with an invisible illness, take the time to listen and learn, to sit with them and ask them what they need. Those with invisible illnesses are bad asses and true gems.

Instagram Accounts

nina_tame = Nina has spina bifida and is a relatively new wheelchair user. She’s an excellent advocate for people with disabilities and is a great account to follow! 

natashalipman = Natasha has oodles of experience dealing with invisible illness and disabilities and her podcasts and blogs are amazing 

notyourgrandmasuk = Hannah has fibro and is extremely passionate about bringing personality to mobility aids to make them fun and funky. She has an online shop opening soon so she’s one to keep your eye on 

youlookokaytome = Jameisha is an amazing advocate and has written some amazing pieces on how chronic illnesses and treatment effect people of colour differently. 

butyoudontlooksickofficial = They are trying to become a non-profit organisation to help fund those with chronic illnesses to get the doctors appointments and care they so desperately need. Such important work! 

sicksadgirlz = An amazing page and community set up to create a hub for those struggling with physical and mental health. They hold regular zoom calls for people who want to chat with people going through similar stuff and are super friendly and inclusive 

thisthingtheycallrecovery =  Has loads of great chronic illness products and her posts are always honest and insightful. Deffo worth a follow 

uninvisiblepod = Has some brilliant chronic illness and disability facts and statistics to help increase education and awareness around this often overlooked branch of medicine! 

barryleart = He creates beautiful art which often incorporate exactly the words you need to hear in that moment. He also created great videos exploring topics surrounding disability and ableism. 

itsandrewgurza = He is an amazing advocate and is doing fabby things in the world of disability and relationships/sex. His posts are so important and crucial for stopping the infantilisation of people with disabilities and he and his team are making great strides in the disability community.