Invisible Illness

So there I was, in a French Chateau on a blissful summers day, feeling thoroughly content having just had a taster of some fortified French wine, when suddenly, my head stopped. I stumbled outside and fell against a wall, an ambulance was called, and from that moment on, my life was very suddenly and unpredictably turned upside down.

It’s been almost 2 years since that day. I’m now living with an unimaginable range of issues that I could have neither predicted or prepared for. The most intrusive of these are my physical symptoms; in an instant I was reduced from a strong, young Atlas mountain trekker, to someone that could barely lift their dragging feet from the ground, for step after exhausting step, to make it 30m before falling in a tangle of exhausted ‘ragdoll’ limbs. Together with this complete and utter exhaustion came a myriad of other symptoms – shaking, an inability to think, stumbling over words, an unrelenting pressure in my head, an uncontrollable eye flicker. The unexpected outcome was my healthy appearance, aptly described by my neurologist who said, “You look a million dollars”. Excellent! Isn’t it a shame I feel like an extra from the walking dead.

When you couple this ‘million dollar look’ with intensely disabling symptoms it leads to some challenging situations. For example, invalid cap parking spot + the look, just doesn’t add up for the concerned passer by who believes they are defending a disabled car parking spot from abuse by a seemingly healthy soul.

Yet, there is a population of invisibly disabled individuals who are entitled to, and rely on the use of these very amenities, who need consideration. For those that suffer from invisible illnesses, there comes the added burden of anxiety when using disability services, with the prospect of dirty looks from passers by, or worse still, having to defend their use of those services to well meaning, but judgemental and ill-informed guardians of disability facilities.

I am not saying that the fact that I look ‘well’ is inherently bad, in fact, it can be really useful when I feel like playing make-belief, and briefly escape to a life in which I’m your average Uni student, where the reason I feel like death is because I partied too hard at downstairs Moose, am now attempting to finish that essay that’s due in 2 hours and mostly survive on a diet of mi-goreng, coffee and late-night chicken gourmet.

I myself am lucky enough to have a brilliant support network of friends and family, who are extremely understanding, and go out of their way to accommodate to me and my condition. Without them, I would be immeasurably worse off.

However, even with them, the subtleties that come with living with an invisible illness are noticeable. Since it’s not immediately obvious when my energy is waning whilst socialising, I may have to ask friends to leave early even when I’m having a great time. Conversely, if I attempt to push through and over socialise, I pay the consequences with acute amplification of my symptoms and extreme ‘rag doll’ effects. For me, one of the most extreme examples of this was when one of my friends legitimately FORGOT that I was ill and thought it would be a great idea to pick me up and spin me round. This was (unsurprisingly) too much for my delicate balance centre to handle and resulted in a complete collapse, a couple of days recovery, and a very, very apologetic friend.

The problem with an invisible disability is its credibility in the eyes of others because of an apparent ‘wellness’ factor, or, when an illness and its circumstances aren’t taken seriously due to judgements being based on outward appearances. This is a phenomenon that is commonly experienced by members the chronically ill community that don’t have symptoms that are outwardly apparent, or those of us who suffer with ‘invisible illness’ – my experience has alerted me to the plight of many of the invisibly chronically ill, whose friends and family are not so understanding. It seems sadly common for friends to feel like they’re being ignored or let down when their sick friend cancels plans. Alternatively, they may be unwilling to adjust plans to more suitable, accessible activities (Netflix in bed is a favourite of mine), which may continue to the extent of even downright doubting the illness of their loved one, which is confronting and damaging to the sufferer.

Despite all these social complications, the most severe and harmful impact of not being taken seriously would have to be, when that judgement and scepticism comes from the medical community. During my diagnostic period of around 3 months, I was faced with a number of doctors who decided upon their initial examination that my symptoms were psychosomatic. It was only my outward symptoms, examined lightly, that provided the basis for my initial diagnosis, which is significant given that many of my most debilitating symptoms aren’t the visible ones: brain fog and extreme fatigue.

I have severe form of Dysautonomia, and although many people who have a less extreme or different form of Dysautonomia or POTS do experience extreme fatigue and brain fog, my absence of these visible symptoms meant doctors didn’t take my symptoms seriously.

Bias against those without visible symptoms is extremely problematic. I can’t imagine having to live with these symptoms without medical back up and treatment. However, these occurrences are unfortunately and also prolific. A recent UK survey of POTS sufferers discovered that patients “…waited a mean of almost four years from presentation to obtain their diagnosis”, and that in the interim “psychiatric mislabelling was common”. These findings resonated strongly with my experience and I find it terrifying that invisible symptoms not being taken seriously is so widely occurring, given the effects of incorrect diagnosis are so considerable. Incorrect diagnosis leads to patients being unable to access the treatment and management education that they need, which undoubtedly has profoundly negative effects on a patient’s management and recovery.

This has been specific to my illness and my experience, but the principle can apply to a huge range of chronic illnesses; Crones Disease, Multiple Sclerosis and Chronic Fatigue/ME just to name a few.

There are a huge range of illnesses out there that all affect people in different ways, through both various levels of disability, different symptoms and differing levels of visibility. All chronic illnesses have their own particularly nasty negatives, and this shouldn’t lead to a competition of “who is the sickest”.

For those of us who are already struggling with our health, being disregarded or judged because we aren’t displaying physical signs of disability is a burden we do not deserve to bear. Ultimately, more thought needs to be given to invisible disabilities by the passer by, the medics, and the general population. Perhaps a little education about the severity and scope of chronic illnesses, combined with a willingness to listen to, and accept with empathy, the experiences of the chronically ill, will lead to a sense of awareness that will support those with invisible illnesses in our daily lives, and perhaps for a moment, make us feel like a million dollars.

We acknowledge the Ngunnawal and Ngambri people, who are the Traditional Custodians of the land on which Woroni, Woroni Radio and Woroni TV are created, edited, published, printed and distributed. We pay our respects to Elders past and present. We acknowledge that the name Woroni was taken from the Wadi Wadi Nation without permission, and we are striving to do better for future reconciliation.