RAiISE Your Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with invisible illnesses and conditions. In this post we hear from Lizzie, who shares her experience of living with ME.
When asked how to write about how it feels to have ME as a child, I didn’t really know where to start. A lot of people describe their teenage years as the best years of their life, but for me, I will always remember them as the worst. For me, it all began when I was 16. I was the healthiest and happiest I’d ever been. I had just finished my GCSEs with grade As. I started college doing subjects I loved and had my first part time job (albeit as a Christmas elf, but we all have to start somewhere), my life was exactly how I wanted it. But then ME arrived and life as I knew it dissipated. Things slowly started going wrong. It was like having the onset of the flu, I was just tired all the time, but not a normal kind of tired. My body felt heavy, it was like a fog approaching that I couldn’t blow away. It was like a tsumni wave gradually sweeping its way through my body, spreading upwards, contaminating each part and leaving no part unaffected. Gradually, it started interfering with my life. The exhaustion had taken hold, like a permeant black cloud following me around. On my worst day I remember crawling (yes, crawling) back from the bus stop, managing to unlock my door then fainting in my hallway. That was the point where I knew I couldn’t go on anymore. I quit my job, dropped out of college, and became an involuntary recluse in my house. Somehow, my body bared up enough so I could finish my A Levels at home.
But that was the catalyst that pushed my body over the edge, and things started to go downhill faster than Usain Bolt could run it. Within a couple of months, I was totally bedbound. I felt paralysed, betrayed by my own body . My physical ability to function seemingly evaporated. I couldn’t sit up, chew, walk, stand or move unaided. Totally dependent upon others, my bed became my only destination and any kind of movement resulted in crippling pain. What had happened to me? Where had I gone? Where had this come from? How could my own body betray me like this? More importantly, what had I done to deserve it? I felt like a prisoner in my own body , the worst part being that there was no escaping it. Sleep didn’t help because I was plagued by nightmares, but being awake was a tortuous existence filled with pain, loneliness and isolation . All my senses were so heightened that my only image for months was my dark room; any light burnt like a stinging nettle, the quietest noises sounded like an uproar. Even mundane things were an overstimulation; the TV was a multisensory threat and a simple conversation was a massive challenge, because I couldn’t hold a thought in my head, let alone articulate it. I was trapped in my own body and in my own mind and couldn’t seem to see a way out. The old optimistic, energetic and outgoing girl I once was plunged into depression and I felt utterly hopeless.
Amongst all this pain, was perhaps the biggest blow of all. Held hostage by ME, the biggest punishment of all was the social isolation . I lay in that bed and watched all my friends pass through all their rites of passage phases; passing A levels, moving off to uni, learning to drive, their first night out after turning 18. All these things that I’d longed to do my whole life, but now I was robbed of the chance. Teenage years are all about wanting to fit in, be liked, be accepted, but I was just a cruel victim , a bystander in their lives, like being in the departure lounge of life but not being able to make the flight. I felt alienated, isolated, like a total social outcast . I had this desperate desire to join in, to be like them. I just craved being normal, I wanted their life . I wanted to climb out of my body and into theirs; be a part of this new world they were entering into and out of the miserable one I had. So engrossed in their own worlds; they forgot about me. Some of them tried to visit me in the early stages; but ME had robbed me of my personality . After all, why would they make the effort to come and see me when I didn’t have the energy to hold a conversation? I’d be asleep after ten minutes, and could barely string sentence together. We had nothing in common anymore – their wild nights out were worlds away from my months of nocturnal hibernations. M.E had segregated us, my symptoms were incomprehensible and illogical. They couldn’t understand why I needed a wheelchair when ‘I could walk’, why I couldn’t quite stay awake throughout going out for a meal, why I could be seeming reasonably energetic one day and then confined to my bed the next. ‘You look fine’ they’d say. And I don’t blame them. How could I expect them to understand an illness that I didn’t even understand myself?
After years of searching for an alternative therapy that worked, I finally found one that did. Although now reduced, my battle with ME is far from over. My life is still a precarious balancing act between activity and rest, and the slightest overshoot can send me back into bed. I have learnt to live alongside my CFS rather than against it. And although the worst years of my life, I am glad I had the experience I did. It has been a massive character building experience; I now feel stronger, more empathetic and have a new-found appreciation for life and for my body. However, I now feel it is my duty to give a voice to all those who are currently suffering just like I did. Just because we can’t see them, doesn’t mean they aren’t there. Just because they can’t use their voice, doesn’t mean they don’t have one . Because being a child with ME is so disabling, and they deserve all the help they can get.