Rare Disease Day: The curse of the Invisible Illness

Ataxia is a big part of Tallulah Clark’s life – here she talks about the challenges around rare diseases.

I’ve been staring at my screen aimlessly for the last half an hour, because truthfully today I don’t just want to write about my ataxia. Today is a fairly ok average day in my world and quite frankly I don’t want to think about it. Ataxia is, unfortunately, a very big part of my life so on a day like today, a day where ataxia isn’t the tyrannical bully that it so often is, I’d like to focus on something (anything) else. So, to commemorate this year’s International Rare Disease Day I thought I’d talk about something that hopefully a larger demographic of people can relate to in some way or another. An Invisible Illness. Invisible symptoms and limitations that govern our lives yet so often go undetected. Four years down the line and it is fairly obvious that I have physical limitations, that I am the definition of Bambi on ice. But what about all the not so obvious signs? What about the days when I don’t seem any different but for some reason, I have to cancel our plans? Today I want to shine a light on the invisible symptoms that more often than not go hand in hand with the more tangible and recognisable manifestations. Today I want to highlight the severity of these symptoms, such as brain fog and fatigue, that pre Covid-19 were not as widely acknowledged by the general public and by medical professionals. 

Brain fog does what it says on the tin, my vision becomes hazy and blurry, concentrating on anything can often be near impossible leaving me feeling disorientated and hopeless. This disruption of agency can have a harmful effect on my sense of self-worth as for me, brain fog leads to a further lack of control over balance and coordination. During a day like this finding motivation to even make breakfast is like finding a needle in a haystack. One of the most frustrating and upsetting things about brain fog is that I can’t predict when it’s going to affect me, when it’s going to burden and monopolise my day, backing me into a corner until my only choice is to surrender and give up. Fatigue shares some similarities; the overwhelming sense of exhaustion also results in unproductivity and a lack of motivation. On a day with fatigue getting out of bed is a struggle, talking is an effort, getting from A to B is hard work. Both these invisible symptoms are often as difficult to manage as the more obvious manifestations and can also leave me feeling valueless and like an inconvenience. 

Having a rare disease is difficult enough. Being misunderstood and demoralised is difficult enough. But on a day when one of these invisible symptoms takes over, everything just becomes ten times more difficult. Having a rare disease often feels like the world is against you; every day is a battle, not every day is as hard as the previous, but a ‘good’ day is a day where one of these invisible symptoms hasn’t managed to seize control and prevail. Needless to say, these aren’t the only invisible symptoms that torment and exacerbate an illness, these aren’t the only invisible symptoms that affect me and my life, and these are definitely not the only symptoms that go hand in hand with other illnesses and conditions. But it is important to raise awareness that there is almost always much more than meets the eye. That many of the perpetrators are hidden and unobservable. Rare diseases have many layers and what you see is just the tip of the iceberg.