Writing by Sophie Sliskovic // photograph by Sydney Sims
Five years living with an invisible disability and debilitating medical conditions has taught me a lot of things and taken away a lot of things. My journey began at 16 when I was in my final years of school and I got glandular fever really badly like a lot of high schoolers do and despite returning to school probably a little too early I was still dealing with the side effects and symptoms. I developed a beast of a condition called Chronic Fatigue Syndrome and learning to live with it has been a complex journey.
Suffering from the symptoms of the illness like migraines, brain fog, fatigue, lack of attention and energy, recurring colds and flus and pain is a struggle. It’s like having a bad hangover that won’t budge twenty four seven. It’s losing your mobility on a bad day. The pain gets so bad amongst every bone and muscle of your body that you physically feel as if your bones and muscles are stuck and you can’t get out. Your legs feel dead and you can’t move or you can move a few tiny steps and then you have to stop again.
It’s incurable and so despite the medications for pain, sleep, yoga, physiotherapy, exercise physiology, massage, acupuncture and every other way of getting some life back into you you’ll never win against this disease. It’s invisible and so that makes you feel as if you’re invisible and if people looked at you they would just see someone who might look lazy, might be unenthusiastic and have assumptions that it’s all in your head.
This illness has flow on effects to your mental health. I live with mental illness as well and every single day you wake up not knowing what to do and what you’ll feel like when you get up, it’s the fear that if you go to work or do something and you have a flare and what you’ll do to fix it, it’s having to carry a personal pharmacy on it which can be draining, it’s feeling depressed and lonely (oh so deeply lonely) all the time because socializing just doesn’t happen some days for you and you can go days on end without seeing your friends.
I grieve so deeply for my old body that sometimes my brain can feel as if it is all a bad dream and a lie that I’ve been living for 5 years. It’s sometimes having dark days that are so bad that life is like a nightmare and you’re at an intersection where you can turn one and continue to live your life or the other way where the world might be better without you in it.
The life before I was sick really just feels like a distant memory and as I remember bits of it, it makes me sad and I just would do anything to return to that time. I try to tell myself to be patient and to appreciate all the small things you’ve still got happening in your life but that as well feels impossible to capture all of those memories and moments too.
I’m learning a lot about myself and who I am and I’m proud of myself for learning to live in this crazy world where life is nothing but normal and usual.