Living with Invisible Disabilities: A Personal Journey
By Anonymous
“You are sick. It is not a life-threatening condition, but it is a lifelong condition with no cure. All we can do is teach you to manage your symptoms.”
Those words may have been the last thing I wanted to hear out of my doctor’s mouth. Lifelong. My life has not yet been that long sitting at 20 years currently – so lifelong seems incomprehensible. Coming to terms with a disability almost feels like you are grieving – not for a loved one, or a celebrity, but for the life you imagined you would have. A life filled with excitement and full autonomy, a life you could dictate, a life in which your basic day to day needs were within your control. Losing that vision of what your life should be, what it could be, so quickly under the gaze of 12 student doctors and the glare of fluorescent hospital lights is a feeling you never really forget.
The day of my first diagnosis occurred 5 years ago now, and yet its impact is still fresh on my mind. Over the past five years the trials and tribulations of a physical disability have taken their toll, however I personally have been most affected by one aspect of this condition in particular – its invisible nature. As the years have rolled forward, other conditions have surfaced (autoimmune conditions tend to move in packs I have come to learn), and each one of them adds another symptom, another restriction to my life. – all of which to the outside observer seem non-existent. The symptoms only rear their ugly heads to the general public as the final crescendo occurs – passing out in the middle of the street, bedbound due to swollen joints – the list is endless.
It wasn’t until about a year in that I wrapped my mind around its reality and thus its very real consequences. Invisible disabilities are difficult, they are painful, and they are debilitating – I have learned a lot over the past five years and my perspective is one that has been shaped by its wrath. It becomes inherently difficult to explain how you may seem high functioning in life, while living in great amounts of pain constantly. To others, it seems that all is well. Spells of irritability, of rashness, seem rude and unexplained. Beneath these episodes however is an individual who is in constant and unforgiving pain. The impact that this has on a person’s mental wellbeing – to never feel truly well, or okay even is unfathomable to someone who has not experienced it. I equate it to having the symptoms of a nasty flu that never goes away, not fully.
Gaining the understanding that I do not have to explain myself and my disability to others became liberating. Over time, learning to manage my symptoms, while also understanding that what I am experiencing is particularly incomprehensible to most, allowed me to provide the people in my life with grace. I know now that while they may not understand it – they are trying, and that is what matters. This understanding makes that invisible pain seem just a little bit more visible to the people around you. I implore any able-bodied individual reading this article to reach out to your disabled loved ones if they seem angry or mad. They are struggling, and right now all they need is someone to listen.
I now know that while my disability is limiting, it is not a life sentence. Despite what any doctor may say – in my case, for better or for worse, nothing is linear. The illnesses ebb and flow in an oscillatory movement similar to a wave. Each quiet period will eventually lead to an all-powerful wave crashing to the shore – moving everything in its paths – but not all waves will hit as hard; I even have a modicum of control over the wave. The minute that this realisation occurred to me it was as if I had for the first time in a while gained some of my autonomy back. Every time the illness became overwhelming or all consuming, the reassurance that the wave would eventually return to the sea soothed my anger at the cards being dealt to me.
While I cannot control my body – and the way in which it hurts itself, I can control my reaction, my direction. There are somethings that due to my disability will never be possible. I will never be the same as my peers, and to achieve what they simply stumble upon I must work ten times harder. But this is okay – it is merely a fact of my life that is set in stone. I now only measure my achievements regarding my own aims and personal goals, not the trajectory of another. I am proud of what I have come to achieve and the life I have made for myself. I want every person at the beginning of a chronic illness to know that while yes, it will be hard, and things will inevitably look different, it is not the end of the world. It is merely one door closing, and another one peering open. It is now your choice to open that slightly ajar door and follow down its path to see what comes next.
