Name: Max
Pronouns: he/him
Age: 36
Home: Lviv, Ukraine
Sick for: 18 years
Back in 2006 I was a perfectly healthy, vibrant 2nd year University student studying molecular physics in Kyiv, Ukraine. I caught pneumonia and first thought nothing of it, but later had to spend 2 weeks in hospital to recover. I was discharged, yet I felt something was seriously off the very first week being at home – the weakness was overwhelming and made me rest in bed for days.
I later regained most of my previous physical strength yet nobody could explain periods of severe weakness coming out of nowhere once every few weeks. Had anyone warned me about how severe ME/CFS could become it would have rid me and my family of so many complications and sorrow in the future! If only I had known any other patient in Ukraine struggling with symptoms at that time – sharing our experiences with each other would have helped tremendously with coping strategies. Honestly, I could say the same now too!
Before I got sick aged 18 I had lived independently away from my parents and I vividly remember starting to feel like the captain of my own life. After getting progressively sick though, I became a passenger on the back seat so to speak – simply riding along trying to survive. That is a ridiculously frustrating transformation of one’s worldview.
Despite periodic onsets of inexplicable weakness with consequent recovery happening every two to three weeks throughout my 20s, I had managed to build a career in programming, become a hobbyist musician and photographer as well as enjoy a little bit of travelling – all of which I’m totally proud of.
Now, for the last 3.5 years I haven’t left my apartment on my own, my mother is attending to all my cooking needs and chores and most of the time I lay in bed resting. I am now at 30% of my normal capacity. And being such a damaged disabled chronically ill person here in Ukraine during the war is rather scary and here is a reason why.
Ukraine has over 1 million soldiers in the army already but Russia has more and is winning the numbers game. That’s why our government is constantly mandatorily conscripting men to the armed forces and these practices are very far from ideal. There are numerous reports every month about how the medical commission approves people for service who have chronic conditions, official disabilities, very poor vision and even missing limbs. And refusal to serve in the army is punishable by law by incarceration for 3 years. I cannot disclose my full name for fear of drawing attention to myself and being conscripted – no one would believe I am disabled.
While laying down in bed for months I’ve been able to come up with future plans for when the time for a cure comes. I’ve been planning the progression of my further programming career, and developing production philosophy and innovative designs for an electric guitar manufacturing company I want to start one day. My dreams keep me busy even when I’m unable to partake in normal life. One day, I believe, this will change. It has to.
What I don’t get is – we fight vigorously to save 0.001% of the animal kingdom from extinction, yet when it comes to the chronically ill, society won’t fight to cure 1% of its sick population! This is completely illogical and one can even say – irresponsible and cruel.
To the world’s health officials I’ll say this: More than 1% of your constituents are chronically ill with ME/CFS and due to poor health cannot be involved in the workforce or creating businesses and thus don’t pay any taxes and are a burden to the healthcare and welfare systems. Not to mention their relatives becoming their full time caretakers. Why not resolve this situation by funding research for a cure, so that in 5-10 years this problem would be gone? Invest in the future rather than divesting yourself of the workforce!
#GlobalVoiceForME Max
It took Max an hour over a few days to complete this interview in writing.
