How do you convince someone that you quite literally feel as if you’re dying if you have no physical proof to support it? How do you convince someone that your body feels like a decayed corpse when you’ve no scars, bruises or disfigurements to prove it? How do you deal with an invisible illness when no one believes it even exists?
The more ‘you’re so young, liven up’ or ‘go to bed earlier’ statements I’d receive, the more I began to question myself and my illness. I began to wonder whether the excruciating pain and fatigue that my body was experiencing was in fact ‘normal’ – a few years on, I can confirm it doesn’t even come close.
I gave up expressing my fatigue after I received way too many ‘i’m tired too’ reactions. It often felt like a personal attack, almost as if I chose I feel like a burden. I often would get responses from my peers, some trying to convince me that I was fine and some proposing that my tiredness was completely self-inflicted. I can’t begin to explain the degrading sensation in my chest on each occasion my suffering was questioned and laughed at when I was innocently seeking support and understanding. Fighting back an angry response was difficult – experiencing so much pain for years, to have it completely dismissed was utterly debilitating. Upon reflection I don’t blame anyone for passing my claims of an illness as a lie, I mean – what proof did they have to work with other than my words?
At 18 years old, most would wish for materialistic items – I would pray for energy and to one day wake up miraculously cured. I ignored the hospital’s orders to pace myself, discuss my rights with work and to stop trying to keep up with my friends – because having an illness that wasn’t visible to the human eye made me feel like I had no real reason to do any of those things. The unconvinced reactions I’d received from others, was enough for me to take on the struggle alone – I tried to lead a ‘normal’ lifestyle and doing so increased the intensity of my side effects a notably great deal.
Just a small portion of the population has an understanding of invisible illnesses, many of them being sufferers themselves. I strongly believe more awareness needs to be raised and education needs to be provided regarding these topics as too many suffer in silence with the fear of being perceived as weak, a liar or having their disability underestimated to the point they no longer feel they can speak out in confidence.
If someone claims to be suffering from a form of invisible illness, you should never disregard them – if you’re having a difficult time believing or understanding them, provide them with an ear to listen to, instead of speaking unwanted words of disbelief. You never know what they could be experiencing, or the pain their body could be in.